ME/CFS Warrior

"I Never Thought My Sister Would Die...from ME" by Roisin Wilson

2012-01-24T20:37:00.000-08:00

I was reading through Co-Cure's latest news and saw this article from the Irish Times. For anyone who believes this disease is not serious read on...

http://www.irishtimes.com/newspaper/health/2012/0124/1224310666209.html

MY HEALTH EXPERIENCE: RÓISÍN WILSON Sophia’s nervous system had been ravaged by ME

BEFORE MY sister Sophia got Myalgic Encephalomyelitis (ME), I had subconsciously developed a disparaging view of the disease. The little I knew about ME at the turn of the century was from how it had been portrayed in the tabloid press.

ME had been painted as some kind of luxury illness, labelled “yuppie flu”. It seemed a very boring disease and I can’t say I had any interest in it.

I had got the impression ME was kind of a sabbatical illness, an excuse for a few weeks off work to recharge the batteries. So when my mum told me Sophia had ME, I wasn’t that worried.

Sophia, two years my junior, had had meningitis before and malaria twice. What was ME compared to those bad boys? My feisty sister could easily whip this lily-livered ME.

I was living in New York at the time and on transatlantic phone calls with our Irish mum, she would tell me how my sister had had to leave her London life because she was too ill to look after herself. She told me Sophia was getting worse and that nearly everything hurt my sister.

I thought my mum was exaggerating; how can everything hurt Sophia?

Light hurt my sister, noise, smells, vibrations, the list went on. My then 26-year-old sister had almost zero energy and had to lie in a blackened room day and night, wearing a blindfold and earplugs, in constant pain.

If that wasn’t bad enough, the doctors treating her said this disease was a mere “wrong belief”, despite doing no physical tests on their patient. And just for good measure they called my mum an enabler, for believing her youngest child was genuinely ill and threatened to remove her as Sophia’s carer.

I listened to what my mum told me, but I couldn’t really take it in. How could Sophia be so desperately ill for months on end? The ME my mum described was like nothing I had read about on the net. ME is often referred to as Chronic Fatigue Syndrome (CFS) and the information my Google searches revealed at the time did not correspond with what my mum was describing about Sophia. I believed my mum, but I could not grasp just how ill my sister was.

By the time I came back to Britain, I was still none the wiser, but I was more clued up about telling people about my sister’s disease, or rather not telling people about it.

Upon hearing of my sibling’s ME, people’s reactions ranged from “Is that all? I thought you were going to say something serious from your tone of voice”, to polite “humour-her” nodding and baffled, sympathetic faces, and then the slam dunk of some responses.

“Maybe your sister has got issues with your mum/dad/whoever,” or words to that effect. “Issues!” I snapped at the last person who suggested that, “Issues! If you got ME from having f***ing issues, then the whole b*****d country would be down with it!”

Not long after I returned to Britain, 9/11 happened. My then husband was in the Twin Towers that day, and with hindsight, I can see I over-reacted to 9/11, because it was on the strength of that, that I decided to become a nurse.

Throughout my three years of nurse training, I didn’t tell a soul about Sophia and the ME. I don’t think I even mentioned I had a sister. I saw how ME was viewed from the other side of the fence and it wasn’t good or accurate. One day during my second year of training, I was on my cardiac placement and telephoned my mum on my break.

She was distraught, because at that very time I was calling her, the police were breaking down the door so Sophia could be sectioned into a mental hospital.

I didn’t know what to do, so I called my brother Shane, who went straight down to help mum and Sophia. I then went back to the ward and couldn’t say anything to anyone.

And it was around that time I nearly cracked. I very nearly told my personal tutor about my fears and concerns for my sister. I was about to blurt it out once when my tutor mentioned that our confidentiality could be broken if somebody was at risk or over something illegal.

Confiding about Sophia could have me seen as an enabler, it could have jeopardised Sophia even more; I couldn’t risk it. I stayed schtum and blamed my tears on PMT and the stress of course work.

Visits to Sophia were rare and precious, they had to be in the dark with only a smidgen of light. Her body may have been torturing her, but Sophia’s mind was still all there. Those 13 days in the mental hospital had done irreparable damage to my sister, though, she went downhill from there.

I never imagined Sophia would die from ME, I thought she would outlive the lot of us, by years. But my sister became the first person in England to officially die from ME, a dubious honour indeed.

Sophia was 32 and had been bedridden for the last six years of her life. I was in shock and grief-stricken for months after her death, but in among all the pain, there was a tiny part of me that felt lighter; that tiny light was one of relief, relief my sister was not suffering so unbearably anymore.

The post-mortem revealed the physical evidence of Sophia’s ravaged nervous system, proof at last her disease was of physical origin. Sophia’s death from ME made news around the world, but it hasn’t changed how people with ME get treated in Britain – well not yet it hasn’t.

When Sophia got sectioned, the event was tape-recorded. This profoundly moving audio is included in the award-winning documentary Voices from the Shadows , a film made out of sheer desperation by the family of a girl who suffers with severe ME.

This documentary includes the stories of other ME sufferers and carers, as well as expert medical opinion and facts. This film needs to be shown to as wide an audience as possible.

Voices from the Shadows will literally save lives and spare much unnecessary suffering and bring much-needed understanding about the reality of ME. This documentary urgently needs a way to be seen by the masses. Please go to Voicesfromtheshadowsfilm.co.ukfor more information.

Sophia suffered and died from ME, but nobody else should have to.

Treatment Update, Labs, and Prazosin

2012-01-11T17:24:00.000-08:00

I've had a couple good days in a row. Yesterday I drove to a grocery store, a coffee store, and took Chelsea to a park for a walk. I had no problems. Then today I woke up saw that we were out of milk and went to another grocery store and got milk. It felt so good to actually be able to be in a grocery store without feeling too woozy. I felt mildly woozy at times but it was brief. I actually wandered down a couple aisle just because I could. I even tested my body out by walking down the cleaning aisle. No problem.

Then I got back and did 4 loads of laundry, folded clothes, and juiced. I'm exhausted now but I'm content.

This was unheard of 2 years ago. Even 1 year ago. I'm going to try my hand at cooking for 5 people and see how that goes. I'm looking forward to it. I hope they like Top Ramen. : )

I restarted Prazosin two nights ago. Prazosin is an alpha blocker used to treat high blood pressure. It is also used for congestive heart failure, PTSD, adrenal tumors, and something else that I can't remember.

I'd been waking up every morning around 4 or so with my heart racing, adrenaline surges, and a weird sort of panic. My ME doctor said that when we've been ill for a long time the sympathetic nervous system dominates the body causing symptoms like I described so he prescribed Prazosin.

When I first tried taking it in December I was sick and had that overall severe body pain, blinding pain in my eyes, chest congestion, etc...I didn't know if it was due to the Prazoson or not. My doctor suggested I stop and wait til the virus cleared before restarting.

So far I think this is a great medication. It is helping with sleep and it's really nice not to wake up with that racing feeling. I'm wondering if it might be helping me during the day too because my nervous system is a bit more balanced. I'm grateful that its working.

I've also been doing daily meditation which is also helpful.

I'm no longer on hydrocortisone because the adrenal supplements are helping. Oh, except I am on hydrocortisone for the bleeding. Thankfully it has all but stopped (knock on wood). I really hope it continues and doesn't restart once I stop the medication.

I got an email from my ME doctor saying he wanted to talk to me about my lab results. He forwarded a copy to me and they are whacky. The metabolic panel is all off. I have low globulin levels which I've never had before. One of the things globulins do is help fight infection and low levels suggest immune dysfunction. It could be caused by a number of things, some of which are serious, but I'm guessing its related to chronic infections and a faulty immune system.

Testing also revealed that I have active HHV-6, EBV, and Chlamydia Pneumonia. The testing my doctor ordered was more thorough than I've had before and so the results are solid. I'm still taking Famvir and Valtrex. My EBV levels have come down but not by much.

I'll talk to my doctor about all this next week. I'm interested in hearing what he has to say. I'm thinking if I could clear the Chlamydia Pneumonia (CPN) I could improve my functioning even more which would be awesome. I still believe the CPN is my primary infection because when I crash I feel exactly like I did when I had it back in 6th or 7th grade.

Current Treatment

Partial Methylation Support
Perque B12
Actifolate

Antivirals
Famvir 500mg AM
Valtrex 500mg Twice Daily

Thyroid
Naturethroid 32mg 1/2 AM and 1/2 HS (before bed)

Adrenal Support
Cytozyme AD Neonatal 1-2 pills AM and 1 pill HS
Ashwagandha 1 pill Am and 1 pill PM

Degenerative Disc Disease/Spinal Stenosis
Flexeril 3 times daily
Stretching twice daily

Sleep
Clonazepam 1mg HS
4 drops Doxycycline HS
200mg Gabapentin
1mg Prazosin

Postural Orthostatic Tachycardia Syndrome
Pindolol 2.5mg-5mg AM (as needed) and HS

This treatment regimen is working for me. I may add in antibiotics to treat the CPN. I also plan on adding Bodybio Phosphatidylcholine to clear toxins.

My doctor wants to test my adrenal functioning as well as for parasites. He also wants to test me to see if I would be a candidate for the KPU protocol. Apparently people who don't respond to lyme treatment have some sort of deficiency that is treatable. I just have to get the tests done. Hopefully I can do them this week.

?

2012-01-06T16:32:00.000-08:00

The only thing I can do these days is write about all this. Aside from my mom's death I've never been through such a difficult and frightening time. There is so much unknown. I've been encouraged to think about the future and make plans for it. I know its out of concern but the reality for me is the future is too scary. I have to stick with today. That's hard enough. Or the next task.

I'm overwhelmed with everything that needs to be done as well as with everything happening internally. I shouldn't but I miss my ex a lot.

I guess I was in a bit of shock at how quickly things ended and the grief has been hitting me hard these past few days. Yesterday I stayed in my room and cried off and on throughout the day. Today has been the same.

When I'm not grieving I'm frightened. There are a lot of 'what ifs' to be considered. It's a necessary question with a disease as unpredictable as ME is. What if I have even more improvement? What if I get worse? What if I end up in a moldy place? And then the more practical things like how am I going to physically get myself to various apartments to look at them. I can't yet drive on the freeway although I am encouraged by the improvements I'm having.

I'm also grieving lost dreams. Being around my niece and nephew makes me realize how much I wish I had kids or kid. I'm quiet much of the time I'm around them but I enjoy watching them and I love just being around them even if we don't talk. I'm mindful that I'm a guest and want to respect their space. I remember when we would have various people staying with us that at times I just wanted them to leave so I could have my space back.

I received an email from a recruiting agency today saying they had a position that would fit my qualifications. Then the recruiter left a message on my phone saying they really wanted to talk to me. Why now? The last time I turned in a resume was 2007 after my post-doc. I looked up the recruiting agency and they are for real. I don't know what to make of the timing. It feels almost like a cruel joke. I would love nothing more than to be able to work. It would solve so many problems if I could work right now.

I've been reading Pema Chodron's book "When Things Fall Apart". She encourages being present with feelings rather than running. The first chapter about fear was quite helpful yet also difficult to do-to turn and face one's fears rather than running from them. It might ultimately be helpful but right now I'm not liking it so much. Because I can't distract myself like I used to I have no choice but to face my feelings. Truly the only pain we can avoid is the pain of avoiding pain.

I was trying to organize some things and found a book my Aunt had sent me after my mom died. It's called "Praying Our Goodbyes". Just the title made me cry. When I opened up the book a card from one of my cousins fell out. She'd written it after my mom died. She said that she and my mom had a conversation at my Uncle's funeral and that my mom mostly talked about how proud she was of me for facing some things that occurred about 4 years prior to her death. It both felt good yet painful to read that. I realized how much I'm missing my mom right now. I think that's partly what the grief was about when my sister treated me to a haircut. It's something my mom would have done except she would have taken me shopping for a new outfit.

And the health stuff. I'm still having bleeding which means I'm no longer responding to the anti-inflammatory medication. The bleeding has decreased which is good but after the emergency room visit the treatment stopped the bleeding completely until I finished the treatment-then the bleeding started again so surgery is looking more likely. I decided to be brave and look up the procedure my doctor talked about so I know what to expect and how long the healing will take. It doesn't sound all that fun. I am concerned about going under general anesthesia at this time in my life. Things feel so painful right now that I'm not that sure I'll wake up again. I've lost so much and have had to get back up so much that I don't know that I have it in me to get back up this time. I don't like the bleeding though. If I continue to bleed throughout the weekend I'll get the name of a surgeon and have a consult to get things started. I don't have the time to wait around. I need to get on with my life such as it is.

So I'm trying to do what I can to heal my soul. It would be good to have my own place. I got an email from one of my best friends in high school and college saying they had a condo for rent. She and her husband live in Las Vegas which is where the condo is. I can't afford it but the thought was nice. She invited me out there for a visit to see if I liked Las Vegas.

The other thing weighing heavy on my heart is it looks like I won't be able to have Chelsea with me. It's heartbreaking. It's almost as if she senses something because she is sticking so close to my side even coming in to the bathroom and laying down on the rug. I have to find a way to have her with me. I can't imagine having her heartbroken one more time.

Intellectually I know this is what I need to do-feel everything. It's the only way through. I think the part that's scary is I've never been in this position before where I'm dependent on the government for income and that I have to depend on people for certain things.

Grateful

2012-01-04T16:04:00.000-08:00

I don't write much about things I'm grateful for even though I practice gratitude every day. Going through the break up and being left with few possessions, clothes, etc..has led me to feel incredibly grateful for the things I do have. I also feel grateful for my family, the weather, the improvements I've had, and Chelsea.

My sister treated me to a hair cut at a nice salon. I haven't had a really good cut like this since I got sick. I remember my last good hair cut. It was the last day I was able to practice on December 15, 2007 (I'd been sick since July). At the time I thought it would only be a three month break and "once rested", I'd be able to return to my practice. I had no idea what was ahead of me.

I used to love going to a fancy hair salon in San Francisco. I left pleased and would also treat myself to really nice hair products.

I loved getting my haircut today. The stylist was excellent and easy to be around. The weather was beautiful and I was physically able to get the haircut. Because my sister paid for the cut I was able to purchase some really nice hair products. It felt like such a treat. I left happy and felt like the experience was a much needed boost to my spirits.

I also think it reminded me of my old life and consequently brought up some grief. I was surprised at how tearful I felt after. I think having my someone do something kind for me was moving in and of itself plus the hairstylist was kind and easy to be around. My self-esteem has taken such a hit and is so low that when someone says or does something kind I want to cry.

I feel like I've had a few past lives. There was the one before my mom died and then after, before my PhD program and after, before getting sick and after, before the break up and after. While I appreciate the opportunity to have different life experiences I don't want to have anymore before and afters.

I had a GI appointment today because the bleeding has continued to get worse following the colonoscopy. We're going to try one more month of a large dose of anti-inflammatory medication (hydrocortisone) and if that doesn't work I'll need surgery. I really, really do not want rectal surgery. He explained a couple different procedures and both gave me the heebie jeebies, particularly the one where they'll need to use staples to close something off. I can't remember what exactly it was as I went blank once he mentioned referring me to a surgeon if the bleeding didn't improve. I'll see him again Feb 15th. Hopefully the treatment will work.

The good news is he was able to remove all of the premalignant polyp. It was on the right side of my colon. It's not surprising because so much waste has been sitting in my cecum for long periods of time resulting in a distended cecum and consequent pain. The lower right quadrant pain I've had since getting ill was not ovarian related but a result of a faulty autonomic nervous system. The dysautonomia makes it difficult for waste to pass through the colon like it should. Add in the very high risk category I'm in for developing colon, ovarian, or breast cancer and its not surprising at all that I had a premalignant polyp.

To address this for the past 5 months or so my GI doctor had me reduce the amount of fiber I was having and then added in taking Miralax every night. I've had very little pain (knock on wood) since doing this.

It feels like this disease has attacked all of my organs (as well as my nervous system) one organ at a time. First it was the muscles in my gallbladder not contracting like they should, then problems with the biliary tract, my liver, the gastritis, my heart, and now my colon.

One of the main reasons I don't want surgery aside from the discomfort is I don't want to lose the improvements I've gained. For example today I had the MD appointment and then 2 hours later a hair appointment. One or two years ago a doctor appointment would have had me in bed the rest of the day or when at my worst, a few days in bed.

I'm still looking for a place to live without any success. I simply do not have enough money for rent. There are some share rentals in my price range but I can't find anyone who is interested in living with someone who is disabled and home all the time. I thought about not disclosing that in my emails but decided that wouldn't be fair to the people living there.

It's really rough times for me but I'm trying to focus on things I'm grateful for as well as trying to work on changing certain thought patterns.

2011: The Year of Goodbyes

2011-12-28T16:45:00.000-08:00

That's how this year has felt. One long goodbye to beloved pets, my partner, my house, the backyard, the birds and on and on. Actually the past 4 years have involved a multitude of goodbyes.

I don't think I can handle one more loss but one thing I've learned since getting ill is I have no control over it. I wish I could rewrite the past year. I would have done things differently had I know this would be the outcome.

I did not expect to spend both Christmas and New Year's Eve alone. It's no one's fault and I was invited to my sisters' best friend's house on Christmas day but I couldn't imagine being around people I don't know well. I have a hard time letting people see how deeply sad I am.

I spent Christmas Eve with my youngest sister, my brother-in-law, and his parents. Dinner was 5 star as it always is when my sister cooks. And it was fun hanging out with them. I was a bit preoccupied however, because of the bleeding.

Since the colonoscopy I'd had an increase in bleeding to every other day. It wasn't a small amount either. Christmas Eve I was pleased to drive myself to my sister's house but right before I left I started bleeding again. This was around 4:00. The bleeding continued slowly over the next few hours and started to get rather brisk about 4 hours later so I contacted my doctor's office to see what I should do. Clearly it was getting worse and I was worried. The on call doctor who'd probably had one too many glasses of wine giggled as he said "I hate to send you to the ER on Christmas Eve but you need to go". My sister drove me while I sat there and thought to myself "is all this shit ever going to end-?"

They got me right in and the doctor arrived within 15 minutes or so. Luckily he was able to locate the source of the bleeding. The scope has eroded part of my colon (a small part) by scraping it and it had left an open wound which needed treatment or it would continue to get worse.

My blood count was okay -they gave me a copy to show my doctor. HCT is at 15.8 with 15 being the lowest before getting flagged. The sodium and chloride were both low and my blood sugar was high again. The staff there were wonderful and kind. We were out within 2 hours.

But I can't eat solid foods for 1 week so I'm spending the rest of the year on a basically liquid diet along with yogurt and pudding. Knock on wood I haven't had another episode since the ER. Seems like a fitting end to the year.

I should contact my GI doctor but I'm not up for another MD appointment.

My other sister and her family gave me a Jack La Lane juicer which has certainly come in handy this week. I've been juicing everyday and have been enjoying trying out different combinations of fruits and veggies.

I started Prazosin two weeks ago Thursday night. It definitely helped curb waking up with that startled/racing feeling. I woke up feeling extra tired and coming down with something. A virus had been going around so I must have caught that. Friday night I had to sleep partly sitting up because the virus had moved to my chest and I was having a hard time breathing. I was up from 3-4 am. breathing in steam from a boiling pot of water.

Luckily it didn't get any worse. It had all the symptoms of a looming lung infection but that eased up thankfully.

What scared me though was Weds I woke up feeling woozy and faint. I'd taken a full dose of Prazosin the night before and this was one of the side effects listed. Against my better judgment I took Chelsea out for a tiny walk. I didn't make it far.

When I got back the muscles in the back of my legs were burning as if I'd just run a marathon even though I hadn't walked more than 1/4 a block. I got in bed and the muscle pain/ache/burning got really bad and then encompassed my entire body. I could not look at light because it hurt my eyes so bad. I couldn't watch TV nor get on the computer except to briefly send my ME doctor an email wondering if this was a side effect. Any movement increased the pain. I took 1/2 a vicoden hoping that would help but it didn't touch it. Any movement on my skin hurt also.

When I got up to take meds my legs were incredibly weak making the short trip to the kitchen a bit of a challenge. I wasn't able to take in much water because any movement caused pain.

It eased up by nighttime and the next day was gone. I did not take Prazosin that night. I still have no idea if this was a side effect or the result of a virus but I've never experienced overall body pain like that before nor the intense eye pain. I hope those sorts of symptoms aren't in my future.

I'm going to try Prazosin once more once this week is over and I can eat again. I would like to stay on it if possible. It was nice not to wake up with a racing sympathetic nervous system.

Also, it has helped to add in the extra adrenal support.

I don't know what 2012 holds for me. Usually when I've had a difficult year I'm hopeful the next year will be a good one but I've been saying that since I got sick. I don't know what I believe anymore. I'm just taking things one day at a time hoping I'll feel better soon or that at least some good things will happen.

Being able to afford a place to live where I can have Chelsea and my kitty would certainly help. I can't imagine being without them.

Giving Up

2011-12-15T16:52:00.000-08:00

I'm done. I'm not even sure what I mean when I say that but I'm fed up, done, I give up. It doesn't help my attitude any that I'm crashing. It's not a horrible one but given all that's going on I'm surprised it hasn't happened earlier.

I had the colonoscopy Tuesday. I was up all night Monday due to the prep. The colonoscopy itself wasn't bad although it did hurt when they removed a polyp. I remember asking the doctor "is that supposed to hurt?" I don't remember his reply but I think they increased the versed. It continued to hurt and then I was out and don't remember the rest of it. I ended up having 10mg of Versed. I don't remember the ride home.

The GI doctor sent the polyp off to be biopsied and it came back premalignant so I'm supposed to call them first thing tomorrow morning.

I had a phone consult with my ME doctor today. I almost started sobbing on the phone as I told him that I'm continuing to get more discouraged and hopeless about my situation. I had to fight off the tears because I couldn't afford to pay for anymore time than I already did. He said that it sounds like right now success for me is just putting one foot in front of the other.

He was very concerned to hear that my problems with swallowing are continuing to progress. First it was just trouble with big pills, then I had to stop eating certain foods, and now at times even swallowing saliva is difficult. The other day I couldn't get jello down because the swallowing muscles just stopped working so the jello sat in my throat until finally I was able to swallow. It's a bit unnerving.

My doctor wants me to do the Patricia Kane protocol and get a heplock so I can do IV's at home. He said the PK protocol is good for neurodegenerative diseases like MS and ALS. He hopes that will help with the difficulty in swallowing or at least slow down the progression.

He thinks a big part of my problem is toxicity (including chemicals, toxins from viruses, bacterial infections, etc...). Once I get my body cleaned up then we would go back to tackling infections. Bartonella came up again. I said I couldn't tolerate the treatment. He said once I do the protocol I should be able to tolerate it.

I'm also getting tested to see if I'm a candidate for the KPU protocol. You can read about it here and/or here.

Because I'm under so much stress right now he wants to add in more adrenal support. So I'll start Ashwagandha and Cytozyme AD.

He recommended ginger root to see if it would help my GI symptoms. And he wants to test for parasites and believes that might be part of my problem. We'll also test for amino acid deficiency as well as other nutrient deficiencies. And he'll test me for a bunch of viruses.

My only problem is how am I going to pay for all of this. The testing will get paid for by insurance but the heplock and IV's?

I continue to have bad dreams about the break up. Even while in the relationship I would have a recurring dream where she would break up with me because she had met someone else and I would try to talk to her only to be met with coldness and apathy. Those dreams are still occurring. I had no idea how true they would turn out to be. I just want them to stop. I inevitably wake up out of the dream with that racy feeling.

My doctor believes that people who have been ill a long time end up with a body dominated by the sympathetic nervous system and this is why I'm waking up like this. The Prazosin should help with that. Now that I'm done with the colonoscopy and today got the crown on my tooth I can start the Prazosin. I told him my hesitation in starting it was the fainting. He recommended starting with half a dose and then increase it as I tolerate it better. He also assured me that fainting is not a common reaction even though it said so on the side effect profile provided by the pharmacy.

I need to find a place to live but haven't been able to find anything which is partly why I'm feeling so discouraged. If I had more money for rent it wouldn't be this difficult.

I've emailed lots of places. It turns out there are a lot of people on craigslist who are out to scam others. I've had a few replies from a guy supposedly in Africa who says of bunch of strange things and then tells me to contact whomever and give them all my information. Then there was the woman who wanted me to give her all the information to run a credit report and refused to provide any info until I had done that. Today I got a response telling me I had to be "God-fearing" or else he wouldn't rent to me.

Most people looking for someone to share a place don't bother to respond. The polite ones do and they are nice in the various ways they say they are looking for someone who is employed.

I have emailed everyone I know asking them about what it's like to live in various places. A high school friend moved me to tears when she said it breaks her heart to hear what's happening because she knew me to be one of the kindest and generous people she has met. She lives in Las Vegas and said the services there are terrible so I wouldn't be able to get any help with medical costs.

I suppose I should change the name of this blog to the Debbie Downer blog.

Things should get better one way or another. Apologies for not being cheerful or optimistic. Hopefully tomorrow will be better. I'll be glad when the Holidays are over.

Losing My Perspective

2011-12-12T17:24:00.000-08:00

I've continued to crash but (knock on wood) it isn't a bad one. The colonoscopy prep today feels a bit hard on my body but I think that has more to do with not eating. I'm drinking clear Gatorade as well as vegetable bouillon to help with the POTS symptoms.

The past couple days I have felt so fatigued but it feels different than the regular crash fatigue I normally feel. Or maybe my sleep pattern is shifting to oversleeping. I've slept over 11 hours the past 2 nights. I would be asleep right now but I have to take Dulcolax in 15 minutes followed by more magnesium citrate in an hour. I imagine I'll be busy the rest of the night. My sister will be picking me at the ungodly hour of 6:00 am for the colonoscopy.

My brain has felt weird as if I'm lightheaded. The past couple days I've felt this weird combination of feeling like I'm carrying 500 pounds while also feeling very light.

I had a dream last night that I was shopping with my friend Bobby (who in real life was killed 2 years ago). In real life we were really close and used to go shopping together in SF. We were shopping at this shop that sold really cool golf clothes. We were as happy as can be as we sorted through various cool golf clothes.

I woke up realizing all that has recently happened in my life and immediately felt depressed. Not only are golf clothes not cool : ) but I really don't like my reality right now.

I've decided against Palm Springs after doing some research. I wanted to clarify something in my last post. I do not believe that mold causes ME. I believe it can influence ones symptoms as it can with any chronic illness. It has been a factor in my illness but not the cause.

I have to admit I was surprised to see part of my last blog post on Facebook the other day. In the past most people have given me the courtesy of asking permission before reposting.

I'm feeling a bit irritable and have a pounding headache on one side of my head most likely from not having my green tea today and also from not eating.

I'm discouraged about the housing search. All I want is a safe, warm place I can afford where I can also have my dog and cat and where I'm not socially isolated.

I've asked everybody I know about what their opinion is on living in various locations. I'm considering Eugene, Oregon because the cost of living is not as high here and I'd still be near family but I'm concerned about all the rain.

My youngest sister invited me over for Christmas Eve dinner which is a treat since she is the best cook around. She even won a couple awards at the Fair this past summer.

I hope someday my posts will be more uplifting.

On Hold and Holding On

2011-12-06T16:24:00.000-08:00

With the exception of choosing my Medicare Part D (drug) plan, all other decisions are on hold until Tuesday. Medicare's open enrollment ends tomorrow so I finally made that decision.

It's frightening having to rely on Medicare for medications and medical needs. The coverage is both expensive and bare bones. Medicare pays up to 80% for most things and less than that for others. So, if I need an MRI, or other tests I'll have a big out of pocket expense.

I need to make other decisions concerning the house and other things but at the urging of my sister am shelving those until after my colonoscopy Tuesday. I've been having some alarming GI symptoms that began over a year ago but have gotten worse over the past several weeks. It's unrelated to stress. I've had a change in bowel habits, pencil thin stools, along with random bleeding.

Upon moving I started seeing a different GI doctor. He has been excellent. He is not only kind but is able to explain things that even a cognitively challenged person like me can understand. As an added bonus he also knows about dysautonomia including POTS so I haven't had to convince him of what I need in terms of prep for the colonoscopy.

The reason I've delayed getting a colonoscopy is the prep along with the fasting can cause my blood sugar to go really low. Also, with the POTS I'm easily dehydrated. Both can contribute to a fainting episode. When I had my endoscopy I was so dehydrated the nurse couldn't find a vein to use. I had to talk her into giving me an IV. She kindly did so but was later reprimanded by the doctor. I was thankful she did because I was feeling faint even lying down.

I'm still nervous about the prep and fainting but I need to get this done. My new gastroenterologist told me upon my arrival they would start an IV containing glucose. I'm grateful to him that I don't have to go through a long explanation that gets met with raised eyebrows as if I were exaggerating or being a hypochondriac.

The GI doc believes my mom likely died of colon cancer. It's not the first time I've heard this. Apparently it's common for colon cancer metastasize to the liver. Her oncologist at the time said my mom had a very aggressive form of cancer.

Also, I did not know that colon cancer, ovarian cancer, breast and prostate cancer all share the same gene which means my sisters' and I are all at high risk of developing any of the above with the exception of prostate cancer. Anyone with a family history of colon cancer should get a colonoscopy 10 years prior to the recommended age of 50.

Once I get the results back I can continue with making decisions and transitioning to living in poverty. I can't wait. That is a really hard pill to swallow. No matter how much I try to figure out what to sacrifice I still do not have the money to pay for rent whether its a share or on my own. Then there is the added burden of people who do not want to share a place with someone is disabled. I don't blame them. I don't want to live with someone who is home all the time either.

In order to be able to afford to live anywhere I'll have to use about $400 per month in savings. That will last less than 1 year. I have to buy a bed, pay first and last month's rent plus a pet deposit, buy sheets, lamps, etc...and I'll have to pay moving expenses.

And then the medical expenses. If I see a doctor who charges $300 per visit, I have to pay $60. It all seems insurmountable. I have a car that needs repair. I'm already dipping into my savings to pay for the crown. I used up the flexplan and still owe the dentist $448. And, I need to get glasses.

I won't have dental care or vision coverage because I can not afford to pay the high cost of a Medicare Advantage plan.

The hardest part of my day is waking up to this reality. It's like I have to get used to it over and over again. I spend a few hours each day looking at my expenses as if some new figure will suddenly pop up. Or trying to decide what else I can sacrifice. I will already be going without a landline and cable but I do need the internet. I can't go without food. And the rest of my check is taken up with a student loan and Medicare costs.

I might qualify for food stamps which would help. I'm going to apply for any aid I potentially qualify for.

And I'm grieving.

But there are moments like last week when I was able to drive 4 miles to and from the lab to get my blood drawn and then again to the dentist. I had a great time. Or when my nephew asked if I wanted to watch a Harry Potter movie with him. Or seeing his face light up upon opening his birthday gift. Or hearing my niece play the piano. She's a natural. I am so grateful for these sorts of moments and experiences. That is the one positive outcome of this disease is the ability to find joy in small things as well as the ability to feel grateful for those things.

One of the most striking things about the ME community is the ability to make sacred the small things in life. I think of all the books published by ME patients. And all the artwork. It's inspiring.

So I'm holding onto experiences as mentioned above. They get me through to the next moment or hour or day.

Reality

2011-11-22T16:02:00.000-08:00

I have quite a few decisions to make. The reality of my situation isn't pretty. Our realtor looked into the current market value of the house and gave a rough estimate of what its worth now. It is underwater by a significant amount. It's a bit shocking to see how far down the value of the house fell in less than 14 months. It looks like it might be either a short sale or foreclosure situation.

I don't care either way. The only thing I'm concerned with either scenario is if the bank can take what's in my savings account. I've had some money in there in case I needed surgery since insurance would only pay for 80%. It's not a lot-enough to pay for first and last months rent plus deposit, a bed, bed frame, and a few out of pocket medical expenses.

As long as I know my money is safe (its all I have left) I would go with whatever works best for my ex since she has more to lose than I do at this point.

I don't have much in the way of material possessions. I have only 2 pairs of jeans which fit me, and 4 pairs of sweats and comfy t-shirts etc...Being housebound I didn't need a big wardrobe. I'm going to sell my mom's antiques as even if I stayed here I wouldn't be able to afford a place big enough to keep them.

I've been researching medicare plans to see which plan would cover the medications I'm on. I found one which covers them all. It will cost me an additional $171-221 per month in addition to the Medicare premium I pay for original Medicare. All told I'll be spending approximately $300 for Medicare.

The premiums for Medicare in addition to my student loan (which does not qualify for disability discharge) will eat up almost half my SSDI check.

I've been redoing my budget over and over trying to find ways I can save money. If I don't have a phone, cable, or internet I can afford a little over $500 for rent. If I do include them I can afford about $400 per month towards rent.

I've been searching craigslist to see what's available in that price range. It's difficult to find. A high school friend told me about a place for $430 but the owners' smoke cigarettes and have 12 cats so that isn't a option.

Staying in this area is no longer an option for me so I'm looking at places out of state, in the desert, etc...

Although its scary to consider moving far away, that's the reality. There are no other choices at this time. Part of me doesn't mind moving away. There's too many memories here-memories of when I was healthy and so on.

From Bad to Worse...Next Steps

2011-11-10T15:00:00.000-08:00

Quite a few people have asked me why am I not staying at the house and are wanting me to really "fight for my rights" and saying since I'm sick I should be the one to stay at the house. My response to that is I don't have the energy for a fight nor do I want to go into a fighting stance. All my energy is taken up trying to get through the day with the amount of stress I'm experiencing. It has started to affect my health and I can't afford to lose anymore functioning than I already have.

All I want is to resolve things as peacefully and friendly as possible and move on. It's complicated being co-owners of the house and a bit over my cognitively challenged brain so I'm seeking consultation to find out what the options are. That's it.

I do not have the energy to spare in trying to engage in making her be the bad guy. While I think it sucks that I had absolutely no warning and therefore no time to prepare financially in anyway I think its something that can be solved amicably. At least I hope so.

I have no desire for revenge or to get back at her or anything like that.

I hadn't wanted to try to do a budget until today. After I added up monthly expenses including food, utilities, loan, etc...to see how much I would have left over for rent, I discovered I have $75 left over to pay for rent and that was a conservative estimate. I didn't even include things like copays for doctor visits.

So I tried to see if I was eligible for any other type of financial assistance. But because I co-own a house I'm not eligible for any other type of assistance as the house is considered an asset. Even if I were eligible for more money it might be $50 or so. Not much but every bit counts.

I am angry about all of this but I'm trying to stay out of the anger because it isn't good for my body.

So I'm stuck. Once again I'll state I have absolutely no idea what I'm going to do or how I'm going to get through this.

I'm trying to keep my stress level down but that is difficult when I cannot afford to pay rent ANYWHERE. Everywhere I turn I come up against a brick wall. It feels like I'm in a nightmare.

I'm trying to nurture my heart and soul by reading Pema Chodron's "When Things Fall Apart", Toni Berhard's book "How to be Sick, listening to the audio version of Clarissa Pinkola Estes "Seeing In the Dark", and Sharon Salzsberg's audio version of "Faith". When I can't sleep at night I plug my earphones into my Ipad and listen to one of the two books above. It does help but only for a few minutes at a time.

It's a frightening place to be and all I want is for all this to be over with. I feel like my fight isn't with my ex but rather a fight for my very survival.

I've exhausted all my resources at this point. I didn't get my SSDI check this month because it was stolen back in June. They sent me a replacement check which I deposited but whoever stole my check also deposited a check which triggered a red flag in the system that they had overpaid me so they withheld my November check. The SSDI worker told me its clearly not my signature and has a different bank account on it so it got forwarded to the Department of Commerce/FBI. Because the Dept of Commerce is so overwhelmed it could take months before I get reimbursed. I was told it isn't considered a priority. So, I did not get a check this month.

I have a student loan. Last month I went online to pay it and ended up paying for both October and November by accident. Thank goodness I did because I wouldn't have been able to pay it this month.

It feels like an impossible situation. I see no way out and I don't know what I'm going to do.

People might wonder why am I talking about this on a public blog. I do that for two reasons. One is that its all too common for people with chronic illnesses to be dumped by their spouse/partner and maybe my experience can benefit others although right now my experience my frighten others. The other reason why I'm blogging about this is because I'm trying to gather all the support I can get. I have no pride left and I've got nothing to lose anymore.

I simply don't understand why I can't get a break. It's been a long and difficult four years. I had to fight to get approved for SSDI. I've had to fight to get from bedbound to housebound. I have no fight left in me anymore. I'm too tired, I'm way too tired.

So if you are so inclined I could sure use prayers. It seems it will only be through a Divine intervention that I can find a way through this.

Broken

2011-11-06T12:06:00.000-08:00

I thought a lot about whether or not I wanted or should post recent events but I feel broken and devastated. I'm putting it out there that I am in need support and advice. And I need to connect with my blogging friends. The advice I've received so far is to talk about it as much as possible and to connect with people, animals, nature.

I thought I would be one of the lucky ones whose relationship would survive in spite of this disease. But I still felt a sense of insecurity because I was so sick. I could sense an ambivalence and would ask if things were okay and are things okay between us. I was always told yes things are fine, good, okay.

But that changed Thursday when I received an email from her stating she couldn't do this anymore. The previous weekend she was very preoccupied and I kept asking what was going on and finally said to her "this was what you were like before you broke up your last relationship". I was told things were fine and she was concerned about something else. I knew in my heart that it was about the relationship. I didn't want to believe it.

Wednesday night we had an argument because I knew something was very wrong and I wanted to know what she was thinking about the relationship. I had a strong gut feeling that she was thinking ending it so I confronted her about it and said that if she is thinking of ending she needed to tell me because physically I could not handle the stress of a long drawn out break up.

And I got my illness thrown in my face. She said I would never be the same person again because of the illness as well as some other things. I think it was said out of anger but it hurt nonetheless.

Early Thursday morning I called her to see what was going on (I left Weds night to stay with my sister). When I found out she had canceled her mom's visit I knew then it was over but I still held on to some hope that it wasn't. She and her mom are very close and so much alike its uncanny. I knew it was a big deal for her to cancel that visit. I'm sure her mom would have loved to be there to support her through this.

As I write I'm aware that I'm trying to find that balance between wanting to share what happened but not wanting to go into too much detail so as to protect her privacy. While I thought it was rather low to break up over an email after being together for 7 years a part of me also understands that it must have been really hard for her to tell a chronically ill person that she was done.

I'm devastated. We'd bought a house together a little over a year ago. We rescued one cat and adopted a wonderful golden retriever maybe 2 months ago. I thought of us as a little family. I'd lost my 17 year old kitty that I'd hand raised from 4 days old after she was abandoned by her mom. She and I had a special connection. She died maybe 5 months ago.

The master bedroom had a large window that allowed me to watch the birds outside. We set up bird feeders and a bird bath so as to attract other birds. I started taking pictures of them and was pleased that I'd finally found a hobby to take the focus off how isolated and lonely I was. If I was too crashed to go out back I could take pictures from the bedroom window.

I spent over half by SSDI back pay on the down payment for the house. I had reservations about buying a house and wanted to wait because I'd just gotten approved for SSDI and received the back pay and wanted to buy both of us some things as a treat that we'd survived my not having any income for 18 months. I was going to use the rest of the back pay to pay for out of pocket medical treatments for ME especially since I could not find a doctor who thought this was a real illness.

But I knew it was her dream to own a house and I wanted to make sure that happened for her because of all she had been through with me and this disease.

I'd gone through some expensive medical tests the month after getting approved for SSDI and insurance only paid 80% so I forked over a bunch of money to pay for medical bills. By the time everything was done I had little money left.

Now I find myself in a situation where I cannot find a place to live on the amount of money I get from SSDI. Even share rentals are too expensive. This area is already expensive and with the housing market doing so poorly it has caused rents to go up And all of them state they want someone who works and is not home all day. It seems no one wants to live with a disabled person. The only way I could afford anything is to move far away but I can't do that because I need help with some things and I need to be closer to my family.

I don't know where I belong anymore. I don't know how to go through this without the distraction of a job or being able to do things healthy people get to do when they are in crises.

I no longer have the money to pay for medical treatments. Without the antivirals I'm on I become much sicker and bedbound.

I have no idea what to do. Thank God for my sisters' and their family. Both have said I could stay with them until I find a place.

I'm terrified. I can't believe that I'm in this position. Just 5 years ago I was doing my post doc, my private practice was growing and I so close to getting the required 3000 hours in order to be licensed. My dissertation was well received and I was pushed to start writing and get published. I was hooked up with the right people who knew publishers and various journals so it was a guarantee I would get published. Plus the university wanted to incorporate my dissertation topic into their curriculum. No one had written anything on my topic so it was a new approach. They invited me to apply for a teaching position.

And then I got sick one year later. And I lost it all but at least I still had my relationship.

I'm heartbroken that its gone. I begged her to stay and said I would do anything to save the relationship. Anything. But it was too late. I didn't see it coming like this.

I feel like a failure. I feel defective because my body is broken, my heart is broken, I'm broken. I was not perfect in the relationship. I didn't handle my illness very well but I was starting to accept it and grateful I was in a house with a yard. I know its hard to live with someone who is chronically ill. Well, at least I know it was hard to live with me being chronically ill.

I think what partners/spouses/caregivers don't understand is that we ME patients are acutely aware of how the disease affects our partners/spouses. I know I was and I lived with a constant sense of guilt that she had to work so hard. I'd had a rough time physically after taking the trip in August. The trip flared my back and the pain so bad that I needed to get a lumbar steroid epidural. I crashed even more after the epidural. Not two weeks later I needed an urgent root canal. The root canal put me under. The following two weeks I was frightened at how exhausted I was. There's really know word to describe the bone crushing fatigue. We need one because saying I'm exhausted or fatigued minimizes what is actually occurring. It's really not about fatigue but that's beside the point right now.

I have our dog with me because she was considering returning her to the rescue organization as a last resort. I couldn't bare that because Chelsea was originally surrendered to the rescue because her owners got divorced and neither could keep her. She was so stressed at the time that she was eating everything. They kept her in the garage and she ate something poisonous resulting in liver failure. But the rescue organization had an excellent vet and they nursed her back to health against all odds. She needs liver supplements but she's okay. She's a wonderful dog. I can't imagine having her experience that type of abandonment again. She's been through too much and her soul needs healing. She was really starting to settle in before the break up.

Last night Chelsea woke up suddenly and started barking-a different sort of bark-as if she'd just woken up and didn't know where she was or where I was. She was so anxious that I got down on the floor and put my arms around her until she settled down and went back to sleep.

She wanders around looking as lost as I feel. It's as if we are both stunned by what happened. We're both out of our routine. I'm so beside myself with grief that I couldn't figure out which medications I needed to take and I couldn't remember if I'd taken some of them.

I do not know how I'm going to get through this. I really don't. The odds against me feel insurmountable. I've put word out in the ME community that I'm going through this and the response has been incredible. They get it and their responses have felt like they know me. I've been incredibly moved. One Facebook friend wrote "we are a community. when one of us can't fly we hold them until they can".

So I'm taking things one minute at a time. Yesterday it was one second at a time.

I need a miracle. I need to find a way to get more income. And there is so much more to do when ending a relationship when one is chronically ill. It's different-its much more difficult. I think it would have been a bit easier on me emotionally if it hadn't had my disease be the reason she ended because what I'm left with is I'm no longer lovable because I'm so disabled.

I'm afraid of what the stress is going to do to my body. I can't imagine doing a share rental because I don't want people I don't know well to see me when I'm in a bad crash.

Maybe being broken open like this will ultimately be a good thing.

Intellectually I know that rebirth follows death as expressed in nature when the barrenness of winter allows the birth of Spring. It's just hard to have faith in that right now.

All I know is that I'm hurting real bad inside, I'm grateful that my family took me in, and I'm grateful for the ME community. It is an amazing group of people who know suffering. We all share the pain of having an illness that is so stigmatized and not being believed, etc...

The four positive things that have come from this are that I get to be around my niece and nephew as well as my family. And being in a relationship with limited energy meant that I had little to none left over for anything else. Hmmm....I've forgotten what the other 2 are.

(pardon any spelling or grammatical errors-my brain is fried from stress and lack of sleep)

Time and My Thousand Mile Journey

2011-09-28T16:06:00.000-07:00

I haven't posted since July but it doesn't feel that long. I've noticed the longer I'm sick the more time loses its traditional meaning. Prior to getting sick time was measured in terms of hours of the day-meetings, deadlines, etc...it was also measured in terms of days of the week with Friday being my favorite.

Time is no longer about fitting in all I can in a day. It's no longer measured by hours of the day but more like Seasons of the year or split up between morning and night.

As some of you know I have a severe case of ME. My doctor says I have 'true ME' and I've been told by two doctor's that I will never recover but the most I can hope for are small improvements. While I don't like being told that I also appreciate it because it has allowed me to grieve for the lost hope of a cure or a full recovery and in grieving I've come to a place of acceptance. It has been a long, difficult journey.

In 2009 (I think) I found out that my Aunt and Uncle were going to be celebrating their 50 year wedding anniversary this year. They wanted to have a celebration along with a family reunion in an area that happens to be 500 miles away from where I live.

At the time I thought it would take nothing short of a miracle for me to be able to go. In 2009 and part of 2010 I was bedbound and had difficulty being upright for any length of time so traveling 500 miles seemed out of the question. I started anti-virals in Sept of 2010 which brought me from being bedbound to mostly housebound.

I was grateful but still thought it would be impossible for me to make the trip. I felt deeply saddened that I would miss another family event because of this disease and resigned myself to having to stay home. I kept the invitation in a place I could see it and prayed daily that somehow I'd be able to go for I wanted nothing more than to be in a room with the people I loved most in this world. I'd heard that everyone was going to be there which made me want to be there even more.

I knew it would be the last time we would all be together like that and it felt critically important that I go. I needed to see them it had been so long. I think I've mentioned before that I've always felt different and have been a bit different from the majority culture so I never felt I fit in anywhere while I was growing up. My extended family is the only place I felt okay about myself. I say all this because they gave me the biggest gift growing up. They loved me for who I am. And in doing so, helped me to accept myself. They have given me so much more and I can't do justice to how much I've learned from every single one of them.

My Aunt's and Uncle were praying that I'd be able to attend. Somehow. Then my sister and brother-in-law said we could use their van to travel up and back thereby making the trip more doable.. They took the seats out allowing me to lay down for the whole trip. I spoke with my ME doctor who said that it's possible that by going I could do permanent damage to my system but that sometimes one has to do something for one's Soul. So I went back and forth about whether or not to go. I didn't see how I'd be able to travel 500 miles since traveling 75 miles to see my doctor is too much. My doctor recommended taking extra klonopin to help my nervous system and brain deal with the sensory stuff that occurs with travel.

The decision felt very difficult because on the one hand I was worried that if I traveled I would become bedbound again and I just didn't think I could handle that again. On the other hand my heart and Soul needed to see my family and I couldn't imagine not going.

The event took place in mid-August on a Saturday. If I was going to go I needed to decide by that Thursday because we would need to take 2 days to get up there. By Thursday morning I'd decided I shouldn't take the chance with my health especially since I'd worked so hard to go from being bedbound to housebound and I didn't want to risk losing those gains.

At 3:00 that afternoon I decided we should go so we did. It was a rough trip physically. It took over 12 hours to get there (split up over 2 days). The ride in the van was tougher than I thought it would be even laying down. At one point we drove over a rough patch of road that was under construction and I thought I would vomit because the movement was rattling my system.

When we finally made it there I crashed badly. That Saturday morning I felt so bad physically I didn't see how I'd be able to attend the celebration that afternoon even though I was right in town. I even said let's just start driving home there's now way I'm going to make it.

Somehow I did. I took it literally one step at a time, one hour at a time. We arrived at the celebration and I was deeply moved at being with my family again. I think my love for them along with the Grace of the Divine helped me make it til the end of the evening.

For 6 miraculous hours I felt free of this disease. I had some rough moments where I thought I was going to pass out but luckily there was a chair nearby. Mostly I felt such love for my family and love from them. I was in heaven.

I felt like Cinderella getting to go to the Ball. It was the first time I'd been around that many people in over 4 years.

It was only by the Grace of a Higher Power that I was able to do this.

I've been crashed ever since getting home over 6 weeks ago. It's been a hard crash but my heart is full. And I'm eternally grateful that I got to see them. What a gift that was.

(Please pardon any misspellings, grammatical errors, etc....My brain is still struggling)

Myalgic Encephalomyelitis International Consensus Criteria (link to article)

2011-07-22T22:25:00.000-07:00

Worth a read and possibly printing out for MD's (I only copied a couple paragraphs from the article). It's worth reading the entire article which is at the link below.

From the ME Association:

Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [1-3] and immune system [4-8], dysfunction of cellular energy metabolism and ion transport [9-11], and cardiovascular abnormalities [12-14]. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners, and benefit both the physician and patient in the clinical setting as well as clinical researchers.

............and more........

Using “fatigue” as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion.

No other fatiguing disease has “chronic fatigue” attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery, and will recur to the same extent with the same effort or duration that same or next day.

The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion, and with reduced ability to undertake the same activity within the same or several days.

The International Consensus Criteria (Table 1) identify the unique and distinctive characteristic patterns of symptom clusters of ME.

Two Months Already...

2011-07-20T17:26:00.000-07:00

I can't believe its been two months since my last post. A lot has happened since my last post but then a lot always seems to be happening. I'm living a typical Irish life-full of joy but also tragedy.

I'm trying to keep this blog focused on treatments and/or themes that those of us with this disease all share. I'm still working on my other two blogs but they have taken a back seat for now.

Two days after my last post on May 18 my dad and his wife arrived from out of state for a visit. They stayed for about 4 nights. I was deeply grateful I was able to see my dad for 3 nights in a row. Last year I was too sick to even see him for a 2 hours.

As some of you are aware, my dad is very, very ill with complications from chronic lymphatic leukemia, a recurrence of prostate cancer, kidney disease, peripheral neuropathy, severe hypertension, and so on. The drive here from out of state took a lot out of him prompting his wife to let us know it would be his last visit out here.

Monday night arrived-his last night here. Time to say goodbye. I wanted to hug him and not let go. As I turned away trying not to let him see me cry I was aware that unless I have more improvement that would be the last time I would ever see him.

I walked out into the night not knowing if that would be the last time I'd get to hug my dad or say goodbye. When I got home my 17 1/2 year old kitty was doing poorly. She'd been going downhill for the past month. I stayed up all night with her so she wouldn't feel alone as she approached her death. She died not 12 hours after I said goodbye to my dad.

I've been wanting to write a blog post honoring my kitty's memory but it has been too painful. She was my special girl. I'd hand raised her from 4 days old after her mom abandoned her while trying to move her litter across a busy schoolyard. The mom got spooked by the excited kids gathering around to see this cat and kitten. The mom dropped my kitty. Luckily two friends of mine who happened to be teaching nearby heard the commotion and rescued her and brought her to me. She was like a baby. I had to feed her every 4 hours around the clock. I also had to perform all the functions a momcat would do. Consequently a deep bond formed between me and my kitty. It deepened over the years as we weathered many life events together. Having a chronic illness and being housebound/bedbound these past 4 years created an even deeper bond. I think anyone who has lost a pet while chronically ill can relate to the depth of grief that occurs.

And there are good things happening too. I'm much improved from last year. I'm actually doing better than I ever have been since getting ill. I still have a very limited life and narrow area of functioning but I can do more than before and I can also have visitors.

Next week I get to see my cousins whom I haven't seen in awhile. I'm looking forward to it.

I have a couple decisions to make. The first concerns treatment and the second is problem solving about a big family reunion that will take place next month about 500 miles from home. I have no idea how I'll do it but its my dream to be able to attend. All my extended family will be there to celebrate my Aunt and Uncles' 50th wedding anniversary. My dad and his wife plan on being there also. It will likely be the last time we all get together as an extended family like this. I can't express how badly I want to go. Do I fly? Be driven? Take the train? Or do I even risk it? I've never traveled since getting sick. The consequences could be bad but there's a way I don't care. I'm tired of my life being dictated by this disease. And I want to see the people I love most all gathered in one place.

Treatment:

I got my lab results of some extensive bloodwork. The results were surprising in some ways. Not surprising are my elevated liver enzymes again. My carbon dioxide was low. Glucose was "alarmingly low" (says my doctor). MCH was high (whatever that means).

My Natural Killer Cell function (which destroys cancer cells, viruses, bacteria etc) was very low at 6. That's all the protection I have against infections and cancer-its barely any. NK function is being used by many ME/CFS doctors' as a diagnostic tool.

The most surprising result was my bad cholesterol was pretty high. Heart disease does not run in my family at all and my diet is good. I can't even tolerate fats, I don't drink, smoke, am not overweight and have none of the risk factors for high cholesterol so it was puzzling.

According to my doctor I have 3 bacterial infections. The Bartonella test was equivocal. That along with my symptoms means Bart is still active. My Mycoplasma pneumonia results were also high. But what was extremely high was the Chlamydia Pneumonia (this is not an STD). In fact, it was so high that the lab doesn't measure anything higher so I think that was the triggering infection and will likely be the most difficult to treat.

While doing research about CPN (chlamydia pneumonia) I discovered there are a lot of studies that show a correlation between CPN and atherosclerosis/heart disease/heart attacks/stroke. And I mean a lot of studies-not one or two. I first got CPN in the 6th grade. When I relapse or am in a bad crash I feel the exact same was as I did then.

I found a great site on CPN. I've started taking most of the recommended supplements and have found them helpful. The only thing I need to add in is the antibiotic (doxycycline) and I'm waiting on that until I decide about the trip. Once I can tolerate the doxycycline I'll add in azithromycin and work my way to Rifampin and Flagyl. The treatment is very, very long and difficult (but then so is this disease) I think since my titers are sky high that treatment will be especially difficult. But then I haven't shied away from difficult things. I might be terrified but I still do it.

Treating the CPN will also help the Mycoplasma. I've restarted herbal treatment for Bart and still take Valtrex and Famvir for the viral infections which, thank goodness, brought me to my current level of functioning.

This month makes 4 years since I've been sick. When I look back I can see that I've been sick longer but attributed my symptoms to being extremely busy.

My original question regarding treatment was do I attempt to treat the C. Pneumonia but as I was writing this blog post I realized how can I not treat. If I don't treat the CPN I risk having a heart attack or stroke at some point. Having this disease already puts us at higher risk for a heart attack. Research has also demonstrated that people who've had heart attacks who treat the CPN infection have a much lower risk of having a future heart attack.

In the meantime my gastrointestinal system has absolutely tanked. I'll see a GI doctor Monday.

That's it for now. If anyone has travel tips/suggestions feel free to express them...

I'll post what I decide to do.

I wish everyone much peace and healing....

Back Up!

2011-05-18T15:04:00.000-07:00

I'm back up. I took my blog down for many reasons. I won't go into details except to say a lot has happened and it feels too personal to talk about in a public setting. Which brings me to my next point.

Originally I had decided to stop blogging altogether about this disease and instead develop two new blogs. I'm still planning on starting the two new blogs but will keep this one to discuss treatments. However, I no longer want to share much, if any, personal information in this blog.

The past almost 4 years have been a long extended journey into the dark night of the soul. I needed to talk about what it was like to lose my health, career, finances, etc...not to mention dealing with the myriad of symptoms that I deal with on a daily basis.

I don't feel a need to discuss the dark night of the soul except to say it has led to a deepening of a sense of spirituality thanks to Toni Bernhard and my MD. I feel like I'm in a place of rebirth and rebuilding my life out of the ashes. While difficult I'm grateful to have made it to the rebuilding and redefining myself phase.

The reason I want to keep this blog is that I feel hopeful about all the research that is going on in the M.E. field. Regardless of whether xmrv or some other retrovirus turns out to be the cause we still have to treat the coinfections associated with this disease. Because that is what kills us. Similar to HIV. It's not the HIV virus that kills per se but rather the secondary infections.

I'm going to be trying some new treatments. Treatments that are evidenced based rather than guesswork and treatments based on testing resulting in an individualized treatment plan.

I saw an infectious disease MD who used to be with Stanford. His diagnosis was spot on. Rather than diagnosed me with a poorly defined name like 'chronic fatigue syndrome', I've been diagnosed with:

1. Arthropod Born Disease of the Central Nervous System
2. Myositis and Myalgia (ICD9: 729.1)

I'll be doing a high dose of antivirals along with a drug for chemotherapy along with a mitochondria cocktail. I'll start once I get my test results back. The tests are pretty extensive something I've wanted for a long time.

Here is some information about Myositis and here and here. It explains many symptoms I have including difficulty swallowing.

Here is some information regarding Arthropod Born Disease of the CNS. Also here and here.

I have taken down all my previous posts but will be providing a summary of my treatments to date.

I'm starting two new blogs. One about the birds who visit the backyard and the other focusing on Jung. I have to think of a name for the Jung one.

New Study Demonstrates Unique Proteins in Spinal Fluid of ME/CFS and Chronic Lyme Sufferers

2011-02-24T14:34:00.000-08:00

There are a lot of good things occurring in the ME/CFS world although it might not seem like it with the recent negative studies of xmrv (all of which had problems with subject selection and/or methodology) and the recent PACE study that indicated all we needed for treatment is cognitive behavioral therapy and graded exercise therapy. As if we could 'think' or 'exercise' our way to health. Prescribing such treatments is careless and irresponsible. The PACE study is also full of problems that I won't even bother going into.

So having the following study just released yesterday and featured on CBS News last night with Katie Couric is good news:

http://www.sciencenews.org/view/generic/id/70251/title/Tired,_sure,_but_is_it_from_Lyme_disease_or_chronic_fatigue%3F

http://health.usnews.com/health-news/family-health/brain-and-behavior/articles/2011/02/24/spinal-fluid-may-hold-clues-to-lyme-disease-chronic-fatigue-syndrome

http://www.cbsnews.com/stories/2011/02/23/eveningnews/main20035610.shtml?tag=cbsnewsTwoColUpperPromoArea

http://www.prohealth.com/library/showarticle.cfm?libid=15959

These proteins found in the spinal fluid of ME/CFS and Chronic Lyme patients just might provide biomarkers to help diagnose this disease. They might also point a way towards treatment. This isn't the first time they have found proteins in the spinal fluid of ME/CFS patients but hopefully this time they will continue to research just what might cause these complement proteins to increase (such as XMRV and/or opportunistic infections).

The research reinforces the fact that this disease affects the central nervous system.

It also underscores the fact that this disease is not a psychosomatic disease as many would want us to believe.

I truly believe the tide has shifted regarding our disease. The Whittemore Peterson Institute's discovery of XMRV has paved the way for the tide to shift.

Other good news is that Stanford is conducting a large scale study of ME/CFS researching what pathogens are active in our bodies.

They have also launched The Stanford Chronic Fatigue Initiative website. While I don't agree with the name (putting the word 'fatigue' next to anything to do with this disease is never a good thing) the website as well as the direction that Stanford is heading is a good thing:

http://chronicfatigue.stanford.edu/

Gordon Medical Associates will be hosting Dr. Burrascano who is going to be giving a 'cutting edge' talk on healing from lyme disease on 3/21 in Santa Rosa, CA:

http://www.lymedisease.org/news/lyme_disease_events/burrascanotalk.html

Dr. Montoya will be giving a free talk on ME/CFS on 3/3 at Stanford (I participated in the Stanford study and found out about this there):

Jose Montoya, M.D., associate professor of medicine, infectious diseases, is scheduled to provide information on recent research regarding diagnosis and treatment and the possible CFS-infection connection, 7 p.m. March 3 at the Arrillaga Alumni Center on the Stanford campus. Sponsored by Stanford Health Library, the talk is free and open to the public. Call 498-7826 to register.

There is more good news but my brain is struggling due to starting Rifampin this week to treat Bartonella so I'll stop here.

Virtual Book Tour: How To Be Sick by Toni Bernhard

2010-09-05T19:35:00.000-07:00

I am honored to host this virtual book tour for author Toni Bernhard, who has written a wonderful book called, "How To Be Sick." Toni has been a kind and thoughtful guide for me as I navigate my own journey of chronic illness, and her book is a major gift to us all. She lives what she writes, and I am grateful she is sharing her hard-won wisdom with us. This book fills a void in the chronic illness literature genre, and is a much-needed resource for those who are ill and those who love them!

Before we start, some important information.
Toni's Facebook page: How To Be Sick
Toni's web page (designed by her daughter!): How To Be Sick
Last but not least -- here's where to buy the book!

Now, on with the Virtual Book Tour!

Q: How did you get sick?

Toni: I fell ill on a trip to Paris in 2001 with what the doctors initially thought was an acute viral infection, but I never recovered. After six months, I was given the diagnosis of ME/CFS (Myalgic Encephomyalitis/Chronic Fatigue Syndrome), although since that time, several other acronyms have been used to describe my illness, such as VICD (Viral Induced Central Nervous System Dysfunction) – a working theory of an Infectious Disease doctor from Stanford. I’m convinced that ME/CFS encompasses several discrete illnesses and that until the medical community recognizes this, little progress will be made in finding a cause or a cure.

Q: How did you come to write the book?

Toni: I was completely unprepared for such a drastic change in my life. I was a law professor. I liked to travel to see my family. I liked to go on meditation retreats. I was active in the life of a young boy as his CASA (Court-Appointed Special Advocate). Suddenly, I couldn’t do any of those things. Despite years of Buddhist practice before I got sick, I fell into alternating states of denial, anger, self-blame, and even despair. We live in a culture that worships at the altar of wellness. It’s okay to get sick, but then you’re supposed to get better. Everyone expected that of me and I expected that of myself. Every night I went to bed expecting to wake up feeling like my old self even though for months and then years it had not been the case. So, in addition to my physical suffering I was suffering a lot in the mind. It took 5-6 years to find my way back to the Buddha’s teachings on suffering and to the many practices that can help alleviate these painful thoughts and emotions. Once I began to change my relationship to chronic illness, I wanted to share it with others, so I wrote the book.

Q: How has Buddhism helped you cope with chronic illness?

Toni: First, it’s helped me understand my suffering. Second, it’s helped me to work with the stressful thoughts and painful emotions that accompany chronic illness and chronic pain. I think of the Buddha the way the Dalai Lama does – as a great psychologist. He had a keen understanding of how the mind works. Everyone’s life has its unique mixture of joy and suffering. The Buddha focused on suffering because it’s a truth about life that we tend to ignore or turn away from. It comes from the Pali word, dukkha which really means dissatisfaction with the circumstances of our life. In the first noble truth, the Buddha simply stated that, despite our best efforts to avoid it, everyone has their share of dukkha – both physical and mental – meaning we’re all dissatisfied in some way with our life. For one thing, we’re in bodies and bodies get injured and sick and old. Dukkha for me has included this illness. For others it could be frustration on the job, tension in a relationship, a bad living situation, even frustration over not being able to find your car keys!

It may sound counterintuitive, but when I started to really take in this first noble truth, I felt a great sense of relief. Finally, someone was describing life in a way that fit a good portion of my experience. What a relief to know it wasn’t just me or just my life!

So, we’re all dissatisfied with some of the circumstances of our life – unless we’re enlightened, of course! In fact, that’s my own personal definition of enlightenment: not being dissatisfied with the circumstances of my life. Just imagine for a moment not being dissatisfied in any way with how your life is going – opening your heart and mind to the unpleasant stuff too; just giving up all longing for your life to be other than it is. Just for a moment, drop all that craving, all that desire. It’s a relief, isn’t it? Those “wants/don’t wants” (as I like to refer to longing or craving) will almost immediately pop back into your mind, but it’s a taste of freedom, a taste that lingers.

The bottom line is: We have the life we’ve got – with its unique configuration of joy and suffering. We can’t always get rid of bodily suffering – the Buddha experienced great bodily pain at times. But we need not add mental suffering to that bodily suffering. We can do something about painful emotions, such as worry, fear, anger, resentment. We can do something about this constant craving for things to be other than they are in our lives. We can do something about stressful thoughts that, when left unquestioned, can lead us to spin elaborate stories we tell ourselves about our life and our future – stories that have little basis in reality.

Q: How does the book address this mental suffering?

Toni: That’s the heart of the book – specific practices that help loosen the tight-fisted grip that painful mental states have on us. One way to do this is to bring them to awareness (sometimes called mindfulness), to expose them to the light where we can see them for what they really are – impermanent for one thing (thank goodness), and also not inherently a fixed part of our identity. We are not just our pain. We are not just our illness.

The book contains several practices, some Buddhist, some not, that help us question the validity of our stressful thoughts – those stories we spin about our lives – that have little basis in fact (“I’ve ruined my partner’s life,” “My friends don’t care about me.”). I’ve been helped tremendously here by Byron Katie’s technique for questioning the validity of our thoughts (there’s a chapter in the book devoted to her work) and also by a couple of Zen practices that keep me questioning my assumptions. “Am I Sure?” I’m always asking (thanks to Thich Naht Hanh). Am I sure the doctor I saw doesn’t care about me? Maybe he’s terribly overbooked today. Am I sure my friend has lost interest in me? Maybe she has problems of her own.

And the book contains many practices to help loosen the grip of painful emotions. Since emotions manifest in the body, this can even help alleviate our physical symptoms. One way to loosen their grip is to consciously cultivate calm and gentle mind states such as loving- kindness, compassion (both of these for ourselves first), and equanimity.

Some Buddhist scholars even equate equanimity with enlightenment, saying that if we can be calmly present with both our pleasant and unpleasant experiences, riding the waves of life’s ups and downs without the constant craving for things to be other than they are, we’ll know complete peace. And then, as the Thai forest monk, Ajahn Chah liked to say: “Our troubles with the world will have come to an end.” (On this score, I’m a work in progress!)

Q: What challenges do you specifically address in the book?

Toni: Whether chronically ill or otherwise disabled, we face so many sudden and unexpected challenges. Here are some I talk about in the book: coping with the relentlessness of symptoms and with the disappointment of failed treatments; learning not to blame ourselves for being sick; overcoming fear about the future; coming to terms with a life of relative isolation; handling being misunderstood or ignored by family or friends; dealing with cursory or dismissive treatment from doctors or other medical people; and, for a spouse, partner, or other caregiver, adapting to so many unexpected life changes.

Q: Do you have to be a Buddhist to benefit from the book?

Toni: No. The book is non-parochial. Many people, and I’m one of them, don’t consider Buddhism to be a religion in the traditional sense. It’s a practical path; it’s about how to live life day-to-day. The practices in the book will work for anyone, even for (as some reviewers have pointed out) people who are in good health!

***
Thank you so much, Toni!

More Tests...

2010-06-16T18:08:00.000-07:00

I had to go to the ob-gyn yesterday after spending the past few days with ovarian pain and GI issues. I've been putting off going for awhile mostly because its gotten difficult, if not impossible, to be able to get to the doctor on my own and the whole process is quite taxing on my body.

The ovarian pain has come and gone ever since getting sick. I had a hemorraghic cyst on the same ovary in 2007, another cyst back in 1998 so I'm no stranger to ovarian cysts.

I didn't tell the doctor until well into the exam that I had ME/CFS. She didn't say anything at first but then a few minutes later did ask me if I'd thought about going on anti-depressants. Maybe the two weren't connected.

Regardless, she was very nice and appropriately concerned. She wasn't able to see my ovary on the in office ultrasound so she referred me for a full pelvic ultrasound to be done on Tuesday. And then I go back to see her on Thursday.

We talked a lot about my mom's history which was surprising. I hadn't had a doctor ask me so much about my mom's medical history before (for anyone who hasn't read my blog for very long my mom died of cancer 44 days after being diagnosed).

I didn't know this, and I think all woman should know this, but ovarian cancer has vague symptoms including gastro-intestinal symptoms (that's the part I didn't know), bloating, bladder problems, ovarian pain, weight loss, etc...I also didn't know that adenocarcinoma (which is the type of cancer my mom died of) can be ovarian cancer. And, that the risk for ovarian cancer increases if one has an immediate family member who has had breast, ovarian, or colon cancer.

I continue to have the ovarian pain as well as GI issues so I'm worried but I'm trying not to live there. I have also lost my appetite which is strange. The ob-gyn coudn't feel any mass on my ovary during the pelvic exam so hopefully there is nothing there and this is all ME/CFS stuff.

The ultrasound might be a tiny bit challenging because I have to drink 32 ounces of water 1 hour prior to the exam and I can't go to the bathroom until after the test. I told the woman over the phone that I wasn't sure if I'd be able to hold it but I'd try. Since getting sick I pee like a racehorse.

I also have to see a dermatologist about a spot that I'm sure is a skin cancer. Both my parents had significant skin cancers so I'm pretty familiar with it. I'm not worried about it though because it will be easily treatable. I had a pre-cancerous spot removed from my arm two years ago with no problems.

I think I've decided against stem cell treatment at this time. It turns out that only 30-40% of Cheney's patients showed improvement although 20% of those are functional cures. It's just not worth the risk for me at this point.

Instead I'm going to focus on getting my hormones into balance, going gluten free, and getting my mood to a good place even if that means going on an anti-depressant.

Since my ME/CFS doctor is moving I need to find a new doctor. I'm considering abandoning the idea of paying out of pocket for medical care for treatments that really don't help anyway. I'm thinking of seeing if I can find a good internist that accepts my insurance. Actually, that's not true I do think the Cheney protocol is helping me and Valcyte helped while I was on it. I think I'm just burned out having spent my entire life savings on out of pocket medical care.

I wonder what it would be like to stop chasing treatments. It might be kind of nice.

I did get into the Stanford study and will go there in September to have my blood drawn. They are testing people (both controls and ME/CFS people) to see what pathogens exist in people with this illness. I think its a great idea. I'll also be tested for xmrv. Again. I think I'll probably get these test results more quickly than the previous xmrv test for a study I was in last fall (still haven't received those results).

I'm grateful to be in the Stanford study because I'll get tested for tons of pathogens and will get the results. If anyone wants contact information leave your email address in the comments section and I'll give them to you. People have to go to Stanford to get tested and you have to have been off anti-virals (or at least Valcyte) for 1 year.

That's it for now. Time for more Advil...

Post #8

2010-06-04T19:05:00.000-07:00

I've written seven posts that I've either taken down or not published for one reason or another. I feel like things are germinating in me but I'm not feeling very articulate. There is a lot going on internally as well as a lot going on in the ME/CFS world.

There is a documentary called "What About ME" due to come out in 2011. I watched the trailers and found them quite moving. At one point there is a woman talking about the people she knows that have committed suicide as a result of this illness. She said their bookshelves were lined with self-help books.

Here's a link: http://www.whataboutme.biz/

The suicide rate for people living with this is very high. The psychologizers would have people believe that we suffer from depression that will be fixed with some anti-depressants and cognitive behavioral therapy. They fail to see that 25% of us are so ill that we can not attend to basic activities of daily living, that we live our lives in isolation, and that we have a neurological disorder (in addition to immune system dysregulation) which produces all of the symptoms consistent with traumatic brain injury. We are fighting very hard for our lives.

This is a very different life from the one I imagined. I've gone from researching ideas for my dissertation to researching the best wheelchair to get. From going out for coffee with friends to living my life in isolation. I used to believe in the medical system for the most part. I now see how we don't have a medical system at all but an insurance system which is great when you are healthy...but horrible when you have a chronic illness.

I think what shocks me most is how easy it has been for people that I knew to discard me once I became so disabled by this. Trying to reconnect with old school friends has been eye opening. Things are fine until the question: "so what are you doing now?" I tell them and then never hear from them again. I once believed in the constitutional illusion that all people are created equal. They should have included a disclaimer "that all healthy people are created equal." Once you become disabled you realize there is a US version of the caste system with disabled people at the bottom. So I no longer answer the question "what am I doing now." In fact, I've stopped trying to reconnect with anyone.

One would think that after 3 years of being sick that I'd get used to it by now. With this illness 3 years is nothing. Three years is still within that window of shock and awe. It is still within the time frame of being hit with more losses as the few people who did try to maintain a relationship with me have also gone their way.

I'm still angry about it all. Maybe it will never go away. I do have moments of peace and joy. Most recently was last weekend when I was able to leave the house for a little while. We went to a high end stereo store so I could get some headphones. I treated myself to a pair of Grado 125i headphones which are ugly but sound heavenly. The whole experience at the store was wonderful. I got to sit in a comfy chair and listen to different headphones. I'm grateful I can still listen to music. It's the one thing this illness hasn't touched except for those rare days when my head hurts too much to listen to anything.

I guess I'm adjusting to the fact that I've tried so many treatments with nothing to show for it. Short of stem cells I don't know that anything will help.

So I will continue my search for a wheelchair/scooter, lick my wounds, and continue to try to grow spiritually.

The Hearing

2010-04-13T11:44:00.000-07:00

I don't know how coherent this post will be. I'm wiped out. The judge did not make a ruling today but I'm hoping that he will rule in my favor. If not, as my attorney said, we will win on appeal.

When the judge started questioning me about "chronic fatigue" I could sense that he was not a believer in this diagnosis and got nervous thinking he would rule against me. His disbelief was communicated in his voice. My cognitive difficulties were very apparent and several times found myself forgetting what his question was so I asked him to repeat it and commented that I had forgotten what the question was.

He brought up the neuropsych testing done by one of their SSDI psychologists and stated "you seemed fine during that session" even though the testing showed a 30 point drop in IQ scores.

He asked the vocational expert what sort of job I could do and she came up with "plastics inspector." Then he said "if someone needed to lay down at will would they be eligible for any work" to which she replied "no." Then "if someone can only leave the house once every 3 weeks is there any full-time work they would be eligible for" and she said "no."

The judge stated he believed my testimony and that it was consistent with written testimony provided by my family as well as my doctor's testimony so I took that as a good sign but one never knows. He is a new judge and goes by the book so my lawyer couldn't get a read on a certain win but he said it went about as well as expected.

It was emotional. I'm glad it's over. I feel exhausted and numb. Now I have to get through the 2 hour HIDA scan test this Thursday and then the 2 hour brain Spect Scan a week from Friday.

I wanted to say how much I appreciate everyone's support and prayers. I could feel them....

More later on in the week...

SSDI Hearing in Four Days...

2010-04-08T16:34:00.000-07:00

Just writing the title of this post made me anxious. My hearing is Tuesday morning at 8:30. I have to be there at 8 to meet with my attorney. The thing that is making me most anxious at the moment isn't so much the outcome (although that stresses me out too) but having to be up and functioning at that hour in the morning.

My body does not function before the afternoon hours. I'm worried about fainting. If I did faint the Judge would postpone the hearing so I need to be able to get through this thing. When I went for my endoscopy which was scheduled at 8:30 I could barely function. I keep telling myself that if I need to lie down to answer the Judge's questions then that's what I'll do. Okay, so maybe I'm just as nervous about the outcome as I am about how I'll feel at that hour.

Yesterday and today I had two episodes of the bad right upper quadrant pain. It only lasted a few minutes but it is right around my gallbladder area. It felt like some sort of spasm. I was a bit alarmed by the pain and thankful it didn't last. I called the hospital where I'm supposed to get my HIDA scan to test my gallbladder functioning. They said they could have me come in on Tuesday but obviously that won't work so I scheduled it for Thursday. It's at 8:30 a.m. I tried for later on but one has to fast for 4 hours prior.

I am still trying to schedule the brain Spect Scan. I need to get that done prior to starting stem cell treatments. It looks like I'll also need to get a bone scan of my jaw. My doctor is wondering whether or not I have a hidden jawbone infection which would explain my sometimes high White blood cell count and the worsening of my symptoms over the past 6 months.

What is such a drag is that the medical tests all cause me to crash. I don't like using up what tiny energy I have on medical tests.

Things are proceeding with the stem cell stuff. I'm going to follow Dr. Cheney's protocol. My doctor has ordered Dr. Cheney's Cell Signaling Factors and Mutaflor. I'll do the CSF's twice a day. His protocol can be found here. I'm trying to find his latest DVD's which discuss oxygen toxicity and also explains in general terms what his protocol is. He also has a brief summary of stem cell updates on his blog.

In the meantime I'm continuing to work on my spirituality which I believe is as important as working on my health.

Oh, I've decided to go gluten free once I get the HIDA scan results.

I'm spending very little time on the computer these days so I'm behind in emails, blogging, as well as reading blogs but I'm trying to do a tiny bit every other day until after my hearing and after the HIDA scan.

Spoke Too Soon...And Stem Cells

2010-03-31T14:51:00.000-07:00

I spoke too soon about my relapse being over and about Mestinon. I wrote a post on Mestinon last week but took it down. I do think this medication can be helpful for people and that its worth a trial if you have severe OI (orthostatic intolerance). It looks like it was the cause of my near fainting episodes so I have discontinued it.

I'm going to try Midodrine but I need to get a blood pressure cuff first so I can monitor my blood pressure as Midodrine can cause supine hypertension. Since high blood pressure runs prominently on both sides of my family and my blood pressure has been high at times my doctor said to monitor it while trying Midodrine.

I'm still in my relapse. It continues to be severe. It was nice to have a brief break and I think it was due to the Mestinon but my body can't tolerate it so I won't be continuing it.

I have worked everything out with my doctor. We were able to talk through all the problems and difficulties. I feel pleased with how we worked through this and that he took 100% responsibility for what happened. The administrative issues are being addressed and I'm confident they will be resolved. I also feel good in that I was direct about how I felt about what happened. So it's all good.

Now I have to find my way out of this relapse. I'm going to start some probiotics-the same ones that Dr. Cheney uses with his patients (Mutaflor from Germany).

I've been going back and forth between trying two treatments. Either Rituxamab or Stem Cells. After doing a lot of reading about Rituxamab I decided against that because of the potential for lethal side effects. I have an opportunity to try stem cells and have decided to go forward with that depending on the outcome of my SSDI case. I plan on using some of the back pay money for stem cell treatment.

I'm going to follow the protocol that Cheney uses to prepare patients to receive stem cells in the hopes that it will make the treatment successful.

I figure I have nothing to lose at this point by trying this treatment. I'm bedbound over 22 hours per day as it is. It's going on 5 months now and I'm beginning to worry this is my new normal. Sometimes I lay here in bed trying to figure out a word that would describe the profound fatigue that is occurring. I haven't come up with anything yet. Fatigue doesn't even come close to describing it. I have never experienced it at this level before though. I'm trying to let it happen rather than being afraid of it.

I'm going to be getting another brain scan because of the continuing decline of my cognitive abilities. This time it will be read by someone who knows about ME/CFS and hypoperfusion.

I'm occupying myself with watching a series called The Shield. I'm enjoying it. The Wire was also really good if anyone is looking for shows to watch. I have Netflix which is great.

Still no news regarding my XMRV results. I think its going to end up being applicable to a subset of ME/CFS patients but not everyone. I'm no longer researching it nor do I consider it to be THE cause of ME/CFS. I base this on certain facts that I'm not at liberty to share right now but will when I'm able to. I feel a certain responsibility to share this information because I posted info regarding testing (which I have removed from my blog) and posted that I thought this was the answer to ME/CFS. I have the utmost respect for the Whittemore Peterson Institute and will continue to donate to them because I do feel they are our best chance for some answers but XMRV isn't it.

If all goes as planned I will be starting stem cell treatments in mid-May.

Relapse Over??? Mestinon!

2010-03-16T16:55:00.000-07:00

I'm almost hesitant to post this but I think my relapse may be over. I seem to be back to baseline for which I'm very grateful.

Sunday I was able to out for about an hour. My partner drove me to a park nearby and I was able to take in the beauty there. I was struck by how many shades of green there are. It was so beautiful.

Yesterday I had to go back to the podiatrist because of another infection starting in my big toe. He had to cut back the nail and dig underneath the nail because there is some sort of fungus. I think between my poorly functioning immune system and the poor circulation that I may set a record for the most staph infections in the past 2 years. I go back in a week to see what the fungus is and then start on anti-fungal treatments.

I think what has helped is I finally started taking the generic version of Mestinon (Pyridostigmine Bromide) which is typically used to treat Myasthenia Gravis but is also used off label to treat POTS. Mine has been getting worse and I've been having increased episodes of feeling faint so awhile ago my doctor added this along with Midodrine. After reading the side effects of Mestinon I felt leary of taking it but finally decided to after trying to go to the restroom Friday evening and almost fainting again. Luckily I get warning signs so I'm able to take action prior to actually fainting.

So I started the Mestinon at 15mg which is 1/2 the dose recommended by my doctor. I did have side effects on Sunday but then felt well enough to leave the bedroom AND the house which felt like a major feat. Yesterday was also a pretty good day.

Today I'm fatigued but I've had trouble sleeping the past couple nights.

I'm grateful that this medication is helping my POTS symptoms. I hope it continues.

I wanted to thank everyone who responded to my post last week. I felt so much support from all of you and it helped. I don't know what I'd do without my blogging friends and the blogging world. I feel lucky.

I still haven't heard a word from my doctor. I've sent many emails with some getting sent back so I contacted the practice manager to alert her to potential email problems. Boy was she rude! I was so taken aback because my initial conversation with her when I was thinking about becoming a patient there was in such sharp contrast to the one I had last week. I also heard last week from a friend that there are some troubles occurring there along with some major boundary problems so I'm keeping my distance. I've given up on trying to get the rest of the documentation needed for my SSDI ALJ court hearing from my doctor. It's too much stress for me to worry about. My lawyer has also given up. Little do they know they are creating bad impressions with various doctor's, lawyers, and patients down here. I can not and will not recommend them to anyone until some things get cleared up and other things change.

I'm astounded that my doctor still has failed to follow up on ordering the HIDA scan to see if my gallbladder is functioning as well as a couple other crucial medical issues. I'm still having problems with the upper right quadrant pain.

That's it for now....

David and Goliath

2010-03-07T14:18:00.000-08:00

I feel like David going up against several "Goliaths" at once. First I want to apologize for being absent from the blogging world for so long. I haven't been able to read blogs or comment on my the blogs I love to read.

There is a lot going on not to mention the severe relapse I've been in since late October. This is my first prolonged relapse and I have to admit its starting to frighten me that I'm not coming out of it. I'm not sure what else I can to stop myself from being pretty much bedbound for 22 hours of the day. I've been trying to do some reading when I can to try to understand what I can do.

My ALJ hearing is coming up. For my friends in the UK this is a hearing that occurs after being appealing two denials for my SSDI benefits. I've been in this process for the past two years. I'm very stressed out about it because I've had some bad luck in that both my primary treating physicians died within one year of another. So I'm having to rely solely on my ME/CFS doctor's reports. I do have an attorney but I'm also trying to do research and prepare for the hearing on my own.

So it is with these two things in mind that I went to see my ME/CFS doctor two weeks ago. One was in the hopes that he would be able to help me figure out how to get out of this relapse and the other was that I needed two more things from him to help me with my SSDI case. I needed him to fill out two more questions that my attorney had prepared. The judge in my case is brand new and a vocational expert will be there so my attorney thought it would be a good idea for my doctor to answer these two simple questions. I also needed to get his (my doctor) curriculum vitae.

I was unprepared and a bit shocked at what occurred during my appointment. First a little background. Back in December I had a heart to heart with my doctor because I felt there were some big problems that had happened and I needed to know if he still wanted to treat me (I've talked about the problems at various times in my blog). One of them is the length of time it was taking to get him to fill out any paperwork. He was late getting one ssdi report to my attorney which caused me to miss the deadline. Had I not had an attorney that had to file some paperwork to resolve it I would have had to start over from the beginning. He also filled out my student loan deferment late causing me to be late on my student loans (he knew both deadlines and took over 2 months to fill out the paperwork). It was getting to the point where the "care" I was getting from him was sloppy-medication refills were taking as long as 2 weeks etc...Abnormal labs were overlooked, etc...

So during our heart to heart he said he was still interested in treating me etc....

I was driven to my appointment which is over an hour away. By the time I got there I was in bad shape. He could see how bad I was doing and how bad I was struggling cognitively. He has never seen me as bad off as I was-the weight loss, pale face with dark circles under my eyes, I couldn't get a complete sentence out, etc....I told him I was having increased episodes of feeling faint and one night got up to go to the bathroom and ended up needing to lay down on the kitchen floor so I wouldn't pass out. I'm having a lot of difficulty tolerating being in a passenger in a car for some reason.

He told me that there was nothing else he could do and the only thing that would help were stem cells. Now I expect to hear that from a regular mainstream doctor but I didn't expect that from him. He also refused to order more tests (like EBV) for my SSDI hearing claiming I "had enough evidence and all I needed to do was tell the judge that I would appeal his decision" if he turned me down. He did not fill out the form I gave him and now 2 weeks later and one month before my hearing I still don't have the form or his CV. My attorney needs both asap so he can submit them to the judge prior to the hearing.

My emails have not been replied to. At all.

The day after my appointment I fell into a deep, despairing depression. Had I the means I would have taken my life that day. I know this isn't what people want to hear but it's the truth and a grim reality we all face. The suicide rate for people with this disease is way too high. And one thing I know for sure is that I do not want to live the rest of my life like this. I'm just not strong enough.

All I could think about was that I would never get any better and that there was no help at all anymore-that I would be stuck in this relapsed state for the rest of my life. I felt like any hope I had was taken away with his comment "there is nothing more I can do." Not only did he say that but he said I might have improvement.

Then there is the preparation involved with SSDI appeals. It is such a crazy and demeaning process. My family wrote letters describing the cognitive decline they have witnessed since I became ill. It was as painful for them to write as it was for me to read. It's bad enough that I've lost the life I had but to lose my mind as well....I had to keep reminding myself that this isn't how they see me and that this isn't all of who I am. It was painful for them to put this down on paper. I had a really good mind. I used to be really, really smart...

My closest friend, who is also bedbound with ME and lyme and who I can share everything with even though we have never met, did some research online trying to find my doctor's CV. She didn't find that but she did find some disturbing information about him. It has been troubling me and I am glad that the disability system is so overwhelmed they don't have time to research doctor's. If so I would lose my case.

I always said that if a doctor told me there was nothing more they can do then I would change doctor's which is exactly what I'm going to do. He seems burned out and going through the motions. I've heard this from other patients also.

He told me that Famvir was "useless" (I was trying to find out if Famvir is bad for gastritis) and that he just isn't on board about the XMRV findings. I was angry at him for his arrogance. People have had improvement from Famvir and if he thinks its so useless why did he prescribe it for me just 3 months ago. I also don't agree with his attitude regarding XMRV. I think it is a very significant finding. It became clear to me during the appointment how unaware he is of the current literature on ME/CFS. He's too busy to keep abreast of these things he claims.

I am continuing to do spiritual reading but I think I'm in such a bad relapse and having such trouble cognitively that it doesn't feel like its helping. It might be one of those things that takes time. I just hope there is a God or Higher Power.

These are the reasons I've withdrawn from most everything. I'm just struggling to keep hanging on to a sliver of hope.

I'm sorry this is such a down post. I'm truly at my wit's end...

If anyone has been in a dark place and was able to turn it around by deepening your sense of spirituality, I would sure love to hear how you did this and how long it took. I feel like I'm praying all the time with just an empty silence to greet me...

A Step at at Time....

2010-02-06T19:46:00.000-08:00

The endoscopy procedure left my throat feeling so sore that I wasn't able to eat solid foods until today. Tuesday and Wednesday it was even difficult to swallow fluids so each time I had to drink anything I had to first numb my throat by sucking on throat lozenges.

I looked in my throat with a flashlight to see what was going on and saw a 1" gouge on the left side. I couldn't see the real painful part that was located lower in my esophagus. The first couple mornings after the endoscopy I woke up with bloody drool on my pillow. When I see the doctor I'm going to ask him what could have caused this. I can't afford to lose more fluids than the chronically dehydrated state my body is in nor can I afford not to eat like that for a few days.

The night sweats have started back again.

Thursday night I developed some sort of stomach bug which left me feeling ill all day Friday as well. Needless to say the past few days have been difficult physically.

Today its been difficult being upright. I get up from the bed to go to the bathroom and within two steps I'm so fatigued I just want to lay back down or pass out. It's probably the worst I've felt since getting ill. I think the weight loss and everything have caught up with me and my body has just shut down.

I've increased my Cortef as well as started drinking Gatorade. I'm very grateful I'm able to drink fluids again without pain

I've been spending my days in bed listening to Stephen Levine's "Soft Belly Meditation" and trying to read his book "Healing Into Life and Death." I've read most of his books. He and his wife did a lot of work in the field of death and dying. I'm finding his book to be comforting and appropriate.

I don't know what's ahead for me physically. I don't know if I'll have more improvement or not. But I can work on healing my heart and soul.

I was listening to the meditation on my ipod and Stephen Levine said "it's okay to trust the process" which led to a bout of painful tears (painful because when I cry or burp it hurts my throat). I cried because I became aware of how much damage this illness has done to my heart and soul. I'm turning into someone I don't like. I've become angry and more times than I care to admit have been filled with self pity. Granted it is hard to live like this and it is difficult to deal with the level of abandonment that has occurred, not to mention the medical neglect, the stigma of not being believed or being told the gastritis is a muscle strain, and on and on....the isolation and sense of deprivation have taken its toll on me but its up to me to heal my heart and live from that place. I don't want my disease to be my life story.

[As an aside people who aren't ill might wonder why I spend so much time talking about my disease. It's very simple. It's because its overwhelming.]

Levine (1989) writes: "Illness causes us to confront our most assiduous doubts about the nature of the universe and the existence of God. It tears us open. It teaches us to keep our hearts open in Hell." (p. 30)

I have often said that these past few years have felt like living in purgatory or Hell or like an extended version of the movie Groundhog Day. I'm going to change that regardless of my physical abilities. It's going to take work. If I have to listen to mediations and affirmations 8 hours a day by God I'm going to change my internal state. I cannot and will not live like this anymore.

It's time for me to stop fighting and surrender into a peaceful acceptance. Since getting ill I've relentlessly research and pursued every treatment I could get my hands on (although I haven't done chelation or neural therapy or dealt with my amalgrams but I'm out of money so none of the above is an option)

My body seems to live in a precarious balance that is easily tipped into being bedbound by simple procedures such as partial toenail removal or an endoscopy and when that happens my emotions follow suit. I end up feeling frightened, hopeless, and discouraged. So I will pin my hopes now on shifting my state of mind, heart and soul.

I want to trust in the process again. I want to make peace with death not because I feel like its my time or anything like that but because when I develop symptoms I don't understand I get scared. This latest scare with my stomach was too much. It wasn't the pain so much because I have a high pain tolerance but its been the weight loss that has freaked me out and the fact that my symptoms matched so closely with my mom's months before her death. At one point I looked on the counter and saw the Pepto Bismol, and Mylanta sitting there and flashed back to my mom's counter which had the same things. When I first got sick in 2007 I asked my dad what my mom's symptoms were and he said "she had a lot of nausea." She also burped a lot which we naively joked about at the time.

What I realize is I don't want to live the rest of my life in fear. I don't want to be hounded by the "what if's."

I'll end with this passage again from Levine (p. 36) who articulates some of what I've been trying to say in this post:

Loretta told us of a two-year battle with cancer she had waged. "I fought it so hard to stay alive, but then they told me I was going to die. I was so exhausted I just didn't know what to do.I could feel death coming,so I began reading your book "Who Dies?" and started to say goodbye to all my loves and friends. But as I started to say goodbye to life, I was kind of shocked at how little I had ever lived. And even though it had seemed to me I was trying to stay alive before, it was only when I saw how much I had put on hold that I was pulled back into my life." She said that as death approached she at last saw the value of getting on with her life. She spoke of how she had been so busy trying to get well physically that she had never paid attention to the places in her that had always been so distressed, so unhappy,and perhaps forever ill (emphasis mine). She felt very fortunate that death acted as a mirror in which she saw, "really saw" how precious life was....I was so busy trying to get better that I never really acknowledged how bad off I was. I have never really treated myself with much kindness. I was angry at my body for punishing me, for betraying me. I was angry and frightened most of the time. But then something as you might say "Let go and let the healing in."....

"What a miracle to send forgiveness and love into that which we have so often met with fear and loathing. To meet our pain and illness with loving kindness instead of hatred and anger brings a new trust in life. It allows the confusion that often constellates about the discomfort to release its suffocating grasp. It offers an alternative to suffering.

And now with my stomach in bad pain and sweating from the exertion it has taken to write this post I will end here.

Much peace and better health to all-

Endoscopy Results

2010-02-02T19:57:00.000-08:00

I had my endoscopy this morning. I wanted to thank everyone for your comments, support, and prayers. I was nervous but also surprisingly calm and brought you all in the room with me so if any of you are feeling tired or crashed that's why....

The procedure itself wasn't bad at all. I was lightly sedated and remember the whole thing. There was one point where I felt a lot of discomfort in my throat area and I thought to myself "I'm ready for this tube to be out now."

Prior to the procedure the RN had a difficult time getting my veins to pop so she could put the IV in. She said I was very dehydrated and kindly gave me fluids. I was surprised because I drink so much water but I pee it out just as quickly so I need to figure out how to get my body to retain the water I drink.

The most troubling thing I've experienced today is a pretty bad sore throat. I'm taking throat lozenges and during the 10-15 minutes that the pain is reduced I sip on fluids. I haven't been able to eat much. Hopefully the sore throat will be better tomorrow. I'm thinking the scope must have scraped it.

The doctor found "a 2mm sessile polyp with no stigmata of recent bleeding was found in the gastric body" and "inflammation was found in the gastric antrum." He biopsied both sites but doesn't believe either one is malignant (thank goodness). His initial impression is gastritis and he wants me to take Zegerid twice a day for 8 weeks.

I've been sleeping most of the day which is where I'm heading again. : )

More later on this week....

Peace and Health to All-

Back to Basics

2010-01-29T16:12:00.000-08:00

I'm trying something new with adjusting the settings of my blog to private just to see how it feels.

I'm a bit discouraged because it seems I've been in a decline since October. I keep waiting for a return to my previous baseline functioning but so far it remains as elusive as a butterfly. I haven't been pushing myself because I've spent the past 2 plus months in bed for 20 hours per day. It must be the fact that I've had to severely restrict my diet to avoid the upper right side quadrant pain. In spite of eating about 1000 calories per day (I'm completely sedentary) I'd say I've lost a good 30 plus pounds at this point and still losing. I've added Ensure just to get more calories. It tastes great but doesn't make me feel all that great because it has a lot of sugar in it but also 230 calories and nutrients both of which I need.

My endoscopy is Tuesday at 8:00 a.m. I'm nervous about it and have been going in and out of fear at what might be going on. I haven't a clue. I keep thinking of what Toni said in her comments and it helps.

I'm working on dealing with my ever growing anxiety so I'm back to listening to relaxation exercises, etc....to get my body to calm down.

I've stopped all treatments except for Famvir, hydrocortisone, thryroid med, sleep meds, and calcium/magnesium supplements until I find out what's going on.

I'm trying to do some work on my attitude. I feel zero sense of spirituality and it what I most want and need right now. So I downloaded a bunch of guided imagery from itunes in the hopes that it will reawaken a spiritual sense as well as a sense of meaning.

I don't know that I'll post again prior to the endoscopy but I'll keep you all posted on the results if I get them that day....

Peace and Health to All...

Puzzled

2010-01-14T14:11:00.000-08:00

This abdominal stuff has been stressing me out. It's quite strange because when the pain occurs I feel a surge of anxiety along with this feeling that something is really wrong. It doesn't help that my anxiety has been on the increase these past couple weeks.

I refuse to go back and see Dr. Muscle Strain so I contacted my insurance company to see if I needed to have a referral to see a GI doctor. Contrary to what I'd been told over the phone by various doctor's office I was told that I do not need a referral. Thank goodness. So I contacted a very local (exactly 1.7 miles from my house) GI doctor on Tuesday. The RN who answered the phone upon hearing my symptoms told me they wanted to see me sooner than later and made an appointment with a doctor the following day.

I went to the appointment expecting to be brushed off but I was hoping for a referral for a HIDA Scan to see if my gallbladder is working correctly. The doctor I saw was very nice and I really liked him. He was good friends with my doctor who died in October. He asked a bunch of questions then took me to an exam room. I was expecting him to palpate my entire abdomen but he didn't even though he began the exam stating "I'm going to press down in a bunch of places". He started with a spot near the right side of my stomach. He pressed and asked if that hurt. I said "a little not that much.....OH MY GOD THAT HURTS" as he continued to press harder. He stopped the exam at that point and we went back to his office. He didn't palpate any other part of my abdomen, didn't feel the gallbladder or anything.

He said that he's going to order an endoscopy (although he called it something else). He said he wanted to see what was happening in my upper GI tract. I was surprised and thrown off a bit. He also gave me some medication to take to reduce the stomach acid? It's called Zegerid and is a combination of prilosec and sodium bicarbonate. As he gave me the samples to take he said "I want to get that stomach acid down before your endoscopy." I was totally confused by that point and failed to follow up on why he thought I even had stomach acid because I didn't think I was describing symptoms of a stomach ulcer.

So I sat there for a minute and finally asked him "do you think I have cancer?" and proceeded to tell him about my mom and dad. I've never asked a doctor this question. He said "that's why I'm ordering the endoscopy." Huh. I was hoping for a different answer.

I asked for a HIDA scan although I felt kind of dumb for continuing to pursue the gallbladder issue when he is clearly thinking something else. I didn't even have the presence of mind to ask him what he thought was going on. He said "I'm going to order one test at a time. If the endoscopy comes back normal then I'll order the HIDA scan." I was glad to hear that.

So I left his office feeling good about him because he seemed to be thorough (he ordered liver functioning tests along with amylase and a hepatitis panel) and he seemed to be ruling things out as we were talking. He does not think this is a muscle strain. But I also felt surprised and confused.

I'm wondering if that place where he pressed is responsible for the pain I've been having. It's right near the sternum on the right hand side. I also get pain radiating around the liver area to the back almost like the pain is tracing an outline of my liver.

I stopped the Zywobin Forte because it was causing pain. I'm disappointed because I felt like the enzymes were helping. I also stopped the cholestryamine because that was also causing pain. The fact that both of them caused pain was surprising because neither contains any fat but then the pain has gotten to the point where its not predictable or connected to any particular food. It's not severe pain but enough to be distracting. Sometimes its more of a dull ache.

I put on a pair of jeans to go to the doctor's appointment. I was concerned to see that I was swimming in them so I'm continuing to lose weight. I don't think it shows that much in my face but when I put on clothes its very clear and concerning. These jeans were tight awhile ago.

I am still taking Famvir at the full dose. It's only been 12 days so too early to notice a difference.

Happy Belated New Year...

2010-01-03T18:53:00.000-08:00

I can't believe my last post was on December 19. Time flies....

I don't think there is much more in the way of affordable treatments left although if I could I would try stem cells.

Low Dose Naltrexone didn't work for me. I may try it again in a couple months. Not sleeping along with the dizziness and increased vertigo-like feeling was a bit too much. It could be that it was just too much of a stressful time. My doctor thinks I had a bad reaction to the LDN which happens but I'm disappointed. I had some hope for this.

Yesterday I started Famvir at half the dose my doctor prescribed. The headache is to die for. I was up in the middle of the night last night trying to find the ketamine and licocaine spray that my doctor had prescribed while I was on Valcyte. I was pleased when I found them and disappointed when I saw they were expired. It can't be die off I'm experiencing since its only been two days so the muscle aches, headache, malaise, fevered feeling/chills all must be from another virus along with side effects.

Out of all the treatments I've tried (and I think I might have tried most things by now) the ones that have been most effective have been the methylation protocol, Vitamin C, antivirals, hydrocortisone, and pacing.

Still no news regarding XMRV. I've been reading patient reports on a message board and it sounds like VIP dx got overwhelmed and things are a bit chaotic there right now.

More later on this week....

Update

2009-12-19T15:41:00.000-08:00

I spoke with my ME/CFS doctor this week. I'm feeling very grateful for him. It really helps to have a doctor who gets it. We had a good laugh about the doc-in-the-box telling me that my gallbladder pain was a "muscle strain." Laughing about it felt satisfying. He had a couple ideas about what it could be. One was that it was Biliary dysfunction where the muscles in the biliary tract don't work correctly. It can be triggered by food allergies so I'll be going on a food allergy elimination diet to figure out if I have food allergies. He said the most likely culprits are dairy, soy, peanuts, gluten, and /or eggs. I'll eliminate all for three weeks then slowly add each one in (one at a time) to see what sort of reaction I have.

He also said that I could have chronic gallbladder inflammation in which case I need to have surgery to have it removed. The trick is how do I find a doctor willing to order the necessary tests to find out if my gallbladder is inflamed.

The third idea he mentioned was that toxins might be recirculating so I might try some sort of binder like cholestryamine ( I still have some leftover from the mold fiasco last year), chlorella, or bentonite clay. I decided against the clay because I already have enough trouble keeping water in my system so I'm chronically dehydrated. Apparently if one doesn't drink enough water the clay "can form a brick in the intestines."

I asked about XMRV but there is no other news. I don't have my results yet and it's unclear when the results will be in.

I've been wanting something to address all the inflammation in my body and this time remembered to ask so here is what he recommends: 1) kaprex from Emerson or 2) Zywobin Forte from Emerson Ecologies. I haven't tried either one yet so I can't say how either one works.

The early morning adrenaline like surges and subsequent anxiety is due to increasing autonomic nervous system dysfunction. He recommended a homeopathic remedy called "Coro Calm" and a supplement called "Phenibut." I'm trying to find the best source to purchase both.

We talked about stem cells being my best chance at getting a big jump in improvement. He gave me the name of a company doing some stem cell stuff at a fraction of what Cheney charges. I plan on doing more research into stem cell treatment. It's still too soon to try it; Not enough information, too expensive and only 30-40% of people experience improvement,

He does neural therapy and trained under Bigelson so I asked if neural therapy can help autonomic nervous system dysfunction. He said "sometimes" and left it at that.

The not eating very much along with the toe surgery plus the regular ME/CFS stuff has left me quite weak. Most of my time these past 3 weeks has been spent in bed. My toes are healing extremely slowly and one looks like its battling an infection. The last thing I want to do right now is go back on antibiotics.

I've been doing some more reading on Jung. I'm hoping to start writing some articles next year. One of the things I did for my dissertation is read biographies about Jung and Freud (in Jung's case I read Memories, Dreams, and Reflections as well as the biography written by Diedre Baird). I found their personal experiences of death quite fascinating. Even more fascinating to me was how their experiences of death factored into (or not as in the case of Freud) and influenced their theoretical formulations. My dissertation committee strongly encouraged me to start writing articles so I finally plan on doing just that. I need to focus on something other than this disease.

Doc In A Box

2009-12-11T21:21:00.000-08:00

My computer went down again so I'm borrowing one but only for a little while so this will be another brief entry. It's a bit disorienting for me to be without a computer as its my only link to the outside world. Having contact with other ME/CFS patients is vital for me.

Thank you for all of your comments. They have been very helpful.

I spoke with my doctor. I'll be finding a new one. I really wish Dr. Scott and Dr. Kliman hadn't died. Anyway, this new soon to be ex doctor told me my ultrasound was normal and that I probably have a muscle strain! That's probably one of the silliest comments a doctor has made to me. I have classic gallbladder symptoms: bad pain between my shoulder blades after eating certain foods, pain that radiates to my right shoulder, some nausea, localized gallbladder pain, etc..... Maybe its me but I don't think that muscle strains cause these symptoms. She told me to take Advil and that was it. End of conversation.

I made an appointment with my ME/CFS doctor for Monday thank goodness. I'll bring up the suggestions that everyone made in my last post. I'm hoping he can order a HIDA Scan to see if my gallbladder is functioning. Something is wrong and its not a muscle strain. I know it.

I just want to get this dealt with whatever it takes so I can get on with figuring out the next step in my healing.

Brief Update

2009-12-11T16:06:00.000-08:00

My computer has some sort of virus and hasn't been working. For some reason it is working now but it's shaky and I'm expecting it to go out again.

I had the ultrasound Weds and am awaiting a call back from the doctor. The tech said my gallbladder, liver, pancreas, and kidneys looked fine. It doesn't make sense. It hurt when she scanned the gallbladder area. I said "that must be my gallbladder because that hurts.

For some reason I wake up every morning around 5am filled with anxiety. It's very strange and seems to be physiological. My heart is racing etc....I'm not sure what's going on with that.

No news from the WPI. They have been very silent lately which makes me a bit nervous. I wonder what has changed from all the news to silence. I was going to donate some money but have decided to hold off until I learn more info. I'm beginning to wonder if the XMRV was a bit hyped up.

Gallbladder Woes?

2009-12-07T18:27:00.000-08:00

It is quite cold outside which means it's also cold inside. The insulation in this place is quite poor so in the Winter I'm holed up in the bedroom with a heater. It's too expensive to heat the rest of the place so when I leave the bedroom its as if I'm leaving to go outside. I have to bundle up. I'm grateful for a warm bedroom though.

Last Monday I had the procedure done on my toenails where the podiatrist removed part of the nail down to the quick and then put a solution on them that would prevent the nail from growing back. It's strange that is was almost a year to the day that I had the same procedure done. At one point the doctor was giving me a shot between my toes. It hurt. I found myself thinking "he is not giving me a shot between my toes" and "isn't that what they do to torture people?" I didn't remember it being as painful last year. The rest of the procedure was a breeze. So far they are healing nicely and I find myself feeling proud of them. At least something in my body is going right (knocking on wood).

I did crash from it and spent the rest of the week in bed. It's been only today that I've been up and about a little more.

But it seems that my gallbladder problems have worsened. I don't know for sure that it is my gallbladder. I've stopped eating anything with any fat in it for the past week and today it seems a little spasm was triggered just by drinking water so I've basically stopped eating. Thankfully I'll see a doctor tomorrow. Hopefully she'll order tests right away so I can find out for certain what is going on. I've been stressed at the prospect of possibly having to have another surgery. I keep trying to find that inner place of knowing everything will be okay but find I have all these thought of what could go wrong. I worry about the POTS, my adrenal functioning, etc....It seems that the secondary complications of having this disease never end.

I've been feeling a lot of anxiety in the early morning hours. That's when I have all the worst case scenarios play out. I'm utilizing the amygdala retraining techniques to combat them. I need to watch the video again to remind me. It does help though not a cure.

I'm grateful that some neurological symptoms I was struggling with a few weeks ago have eased up. I'm not having the vertigo feeling or the sensation that I'm on the verge of a seizure. Nor am I having the nausea thank goodness.

Now its just the gallbladder, liver, pancrea section that is really troubling me (along with my regular disease). I'm a little nervous about getting weighed tomorrow. I think I've lost maybe 25 pounds now? I know that weight gain and loss are part of this disease but I can't get my mom's words out of my head. A couple weeks before her diagnosis of stage IV cancer she remarked at having lost 26 pounds. I remember her saying "I've lost 26 pounds now! Whatever I have I'm glad I'm losing weight!" She said it with pride but I could also hear the concern in her voice. She'd been on weight watchers but the 26 pounds was lost in a very short period of time.

Has anyone had their gallbladder out or had chronic pancreatitis? Any tips or suggestions?

Virtual Book Tour: Pris Campbell on Sea Trails

2009-11-28T15:50:00.000-08:00

(super-quick update: I'm doing pretty well and have just been focusing on enjoying the holidays, the crash is easing and I'm catching up on some things)

I am very honored today to host a virtual book club stop for author and poet Pris Campbell. Her new book, Sea Trails: Poems and 1977 Passage Notes, is out and here's Pris to talk about her book!

What prompted you to write Sea Trails?

Actually, I never set out to write a book. I wrote Streaking, a poem based on the New Jersey leg of my 1977 trip down the east coast in my Tanzer 22 sailboat. A terrifying storm hit the night we headed for Atlantic City and I tied it in with the deteriorating relationship with my partner whom I refer to only as R. The poem was published in Empowerment4Women and tucked it away under my other publications.

I soon realized how much I enjoyed writing that poem, so I wrote more, based on other aspects of the trip. I started a sailing poems folder. From time to time, I would add to the folder. One day I looked at the poems trying to decide if I wanted to submit a batch to a journal and suddenly recognized that a book was actually trying to write itself. I dug out my old scrapbook from the trip, with photos and snippets of small charts from the area guidebooks along the way, then pulled out my old log books. Yes, I still had them almost 30 years later. I began going through the log notes and writing more poems as they spurred more specific memories. It seemed natural at that point to add snippets of the log notes since they provided a good transition between the poems. I merged and smoothed them out for better reading.

I still didn’t have confidence that it would be taken seriously with log notes, so I sent it to Lummox first with them removed, but mentioned what I’d done. Raindog said they actually sounded intriguing and asked to see them. He liked the combination and Sea Trails was born.

What prompted you to get into poetry in the first place and when was that?
I’ve loved writing since my childhood. In the sixth grade my class put on two plays I wrote and I started a novel when I was 14. My writing was set aside, except for occasional short stories or articles, for a number of years when I went to graduate school then began a career as a Clinical Psychologist. In the mid eighties I couldn’t suppress that longing anymore so began working on a novel in my spare time. I was in my second attempt at a decent one when I was hit by CFIDS, also known as CFS or ME/CFS, in 1990.

This illness isn’t just about being tired. All sorts of cognitive/neurological problems come with it. In many ways I felt as if I’d had a stroke, but didn’t have one. I had balance problems. I was swimmy dizzy. My thoughts were jumbled. My short term memory was shot. And on top of that light and sound were so overstimulating that my options were totally limited for about the first 8 years. When I finally found a doctor who was able to help me get some of these symptoms under control and deal with what was left, I was able to sign onto a computer for the first time. This was 1999. At this point it was as if I’d lost everything, so when I found a haiku site and found I could write some terrible semblance of the form you can’t imagine how overjoyed I was. Be it small, I’d found a way to be creative again. As I improved more, I moved on to free verse and found my real niche there. This was in late 1999.
Bit by bit my writing began to improve. I started to publish and things continued from there. I had always loved poetry and we had poetry books in my home as a child but I’d never imagined myself writing a poem.

So here’s the short answer…yes, yes, it’s wonderful to do creative writing. Haiku and free verse are so very freeing. Both can lead you to your wabi sabi.

Since you have CFIDS, what inspires you to write these days? Is it different than before you got ill?
My inspiration for writing hasn’t changed. As I said before, I write for the joy of it. I always have. I rarely write about being ill, although sometimes I do. I write about whatever seems to push itself into my mind and demand a hearing. I write funny and I write sad. I write sexy and I write about loss of sexiness. I write about other people. I write about myself. I write about aging. I write about a teenager’s loss of innocence. And I write about the sea. My body may be trapped, but my mind still runs free.

Do you have any advice for people (poets or otherwise), reading this?
I would first say never put off the things that are really important to you. Nobody knows when life is going to throw a curve ball. I left a secure, well paying job to make the boat trip I write about in Sea Trails. I suppose I could’ve waited but something kept urging me…’do it now’. I’m so glad that I did.

If you do get stonewalled, once you grieve your losses, which is important to do, find something, no matter how tiny, that give you happiness and do it. When CFIDS first hit, my mind was a mess. It felt in many ways as if I’d had a stroke. I couldn’t think. I couldn’t remember names for things. I couldn’t remember something as basic as how to make a sandwich. That doesn’t even take into account the incredible muscle limpness, the dizziness, inability to keep my balance or the nausea that made me throw up every day for the first year. Right now, my hands are so weak that I have to write a few lines of a poem I’m working on, stop, put it aside for a while, then start again.

In 1999, I met a poet on the CFIDS forum shortly after I’d begun my first attempts at free verse. She’d taught herself basic html and designed her own website from scratch. My first reaction was, ‘it’s impossible for me to do that. My mind is too shot’, but I found a site that gave html instructions and printed them out. It took me three months to learn what I could’ve learned in 3-4 days in the past, but I did it.
My last doctor always reminded me that I may be a tortoise now, no longer the hare, but that the tortoise won the race and never forget that. I would repeat that advice to readers. No matter what roadblock you run into, find a way around it. If you run into more roadblocks, create a new plan. Never let anything stand between you and your pursuit of something you love.

One last question: With all of the poetry books for sale right now, what makes yours unique?
I like the fact that my book tells a story. I think that’s fairly unique. The reader can travel along with me by way of poem, log notes and charts on my trip. I think most people have a sense of adventure in them, even if it’s not an urge to go to sea. Also, the book tells the story, in counterpoint, of the deteriorating relationship with my partner on this trip. So, we have two stories progressing at the same time. My feeling all along is that this is a cross over book, one that will appeal to nonpoets as well as poets. I’ve had this feeling confirmed when people who don’t even read poetry, much less write it, have read the book and tell me they can’t put it down. Poets have told me the same thing. I love it when poetry can move over to reach a wider group of readers.

***
Thanks, Pris! And now, here she is, reading a selection from her book, Sea Trails:

Sea Trails by Pris Campbell can be purchased directly at http://www.lummoxpress.com and clicking on the book cover. It can also be purchased on Amazon. If you’d like a signed copy, please buy through Lummox Press and instruct us that you want it signed.

After you click on the cover at Lummox, you’ll get a paypal button.

Please feel free to discuss, ask questions and leave comments below! Thank you for attending this stop on Pris' book tour!

Struggling

2009-11-15T16:52:00.000-08:00

It feels like all the improvements I've made have vanished. I've been practically bedbound for the past week. I've had a lot of stressors the past couple weeks and still have not recovered from the intense round of antibiotics to treat the staph infection. As Murphy's law would have it the infection started to come back late last week prompting a return to the podiatrist. The podiatrist noticed the big toenail on my other foot is starting to get ingrown. Because of my history of developing staph infections quickly he said "we need to pre-empt this one" so I'll be having minor surgery to remove part of my toenails on both toes again. I'll have the surgery on November 30th almost 1 year to the day that I had the last toe surgeries. It's quite discouraging having to go through this again but I can't afford to risk yet another staph infection.

One week ago I was in bed with a mild case of vertigo. I've been having little episodes ever since. Plus at times I feel on the verge of having some sort of seizure. It's a strange feeling. I feel like if I let go I'm going to go into full on vertigo or start having seizures. Both frighten me.

I'm continuing to lose weight. Luckily I had gained a bunch of weight-probably 35 pounds. I needed to gain 20 of those pounds. I've probably lost almost 20 pounds now. I don't have much of an appetite so I'm having to force myself to eat. I feel nauseated most of the time but luckily its rather mild.

I don't know what to do. I can feel Eeyore sitting on my shoulder telling me "what's the point of pinning my tail back on for it will just fall off again." I need to speak with my ME/CFS doctor but it costs a lot of money. Until I get approved for SSDI I'm in a tight spot.

So I'm feeling fairly weepy. I don't know how people who've had this disease for a long time hang in there. I hope I can hang on. Dr. Nancy Klimas at the end of the following video that "now is the time not to give up hope":

http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv

For awhile I hung on to those words but with the current decline in my health I'm finding it difficult to hang on to hope. I'm frightened of what's ahead. I'm scared about possibly having a retrovirus like XMRV. Mainly I'm frightened because I'm developing new symptoms and I have no idea what to do.

I've decided to stop the LDN for now just in case that set something in motion. I doubt it but just in case. I think all the stress of late has done a number on my body. My main complaint has to do with my brain. It just doesn't feel well-almost like its swollen somehow. There's the headaches, the sound sensitivity, the smell sensitivity. I'm tired of it. I feel trapped in it.

I'm trying to find my way back to a sense of peace but need new tools. The ones I have aren't working right now. I long for a sense of community but maybe I'll never have that again.

I was doing some thinking about when I got sick. The most serious and debilitating symptoms showed up in 2007 but in 2005 I did acupuncture. The acupuncurist had me do a 24 hour saliva test for adrenal functioning and when the results came back he said to me "I'm surprised you're even functioning." My adrenals were shot in 2005 but I didn't take the test seriously. I was so engaged in writing my dissertation, working, etc...that I didn't have time to not function. It has made me wonder if I've been sick longer than 2 years. Supposedly XMRV likes cortisol so high stress causes it to replicate.

I'm getting dizzy so will have to abruptly stop here. I just wanted to give a little update. If anyone has any suggestions feel free to suggest.... : )

Oh, The Whittemore Peterson Institute has the questionnaire up on their website. Anyone in the world can take it. I would encourage everyone to fill it out as all and any information is useful. Here's the link. Scroll down near the bottom of the page and you will see it.

Trolls

2009-11-05T10:22:00.000-08:00

I was forwarded this article today regarding trolls. I thought it might be helpful in case anyone else finds themselves in this situation. I found it quite helpful.

Statement from Whittemore Peterson Institute Regarding XMRV Testing

2009-11-05T09:17:00.000-08:00

The Whittemore Peterson Institute has issued a statement regarding XMRV testing. They recommend VIP Dx Lab.

It's worth noting that all net proceeds from the test will go towards funding further research at WPI.

This was posted on The Whittemore Peterson Institutes Facebook page.

Updates

2009-11-04T16:16:00.000-08:00

A number of people have sent emails asking about XMRV testing specifically regarding the study my doctor's office is doing. Since I don't have the energy to respond to emails right now I thought I would post a couple answers to questions people asked.

I did go to my doctor on Monday and got blood drawn for a study. However they are only testing patients who are already a part of their practice. I was not able to find out if there are other doctor's across the country doing similar studies.

The Whittemore Peterson Institute will be conducting a study starting in a month or two. I am fortunate to be able to participate in that. I wish I had the name of the researcher who left an anonymous comment on my blog post last week urging me to contact WPI because of my family history of cancer (my dad has a reoccurrence of prostate cancer as well as chronic lymphocytic leukemia and my mom died 44 days after being diagnosed with a very aggressive form of adenocarcinoma). Somehow I managed to find my way to Andrea Whittemore-Goad who very generously put me in touch with one of the researcher's at WPI. I was contacted by someone from WPI yesterday. I am reminded once again that the words "Thank You" are inadaquate to express the depth of gratitude I feel.

Neither study will provide any answers but I am grateful to be able to participate.

I had to stop the LDN for a few days because it was increasing my sleep disturbance and because the Keflex has been making me feel extra bad. I restarted it at a much lower dose (.5mg rather than 3mg). I'll slowly work up to 3mg).

I'll restart the Artmisinin once I recover from the Keflex. I won't be finished with Keflex until this Friday so I'll restart the Artisinin next week.

Lastly, I've been contacted by a publisher to review a book called "Unexpected Blessings" by Roxanne Black who was diagnosed with Lupus at the age of 15. It is a book of "stories of hope and healing." I received it this morning and took a very brief look at it. It looks like a wonderful book and I look forward to reading it. Once I finish it I'll devote a post to this book.

Crashed

2009-11-04T15:07:00.000-08:00

I probably shouldn't be blogging today. I'm in a weird crash and feeling sad and upset by some things. This is one of those times I should just try to stay with my feelings and process them privately. I may say some things I shouldn't but at the moment I'm too tired to care. I've been taking 500mg of Keflex every six hours which means I've had to set my alarm for 4:00 a.m. so as not to miss my dose. And yes, I have needed a high dose of antibiotics to treat the staph infection that was spreading. Needless to say I haven't been getting much sleep which is probably contributing to my mood. In addition I'm getting episodes of vertigo when I spend too much time on the computer.

Obviously I've been spending much time blogging about XMRV. This seems to have upset a number of people some of whom have either left snide comments on my blog or written some less than kind emails. The most upsetting thing has been that a couple of the anonymous comments came from people I know and another from a completely unexpected source. I realize the news about xmrv is creating a lot of different emotions. I too am going through the ups and downs and crashes from all of this. But its the first time I've had reason to hope or even entertain the hope that maybe just maybe I can have more of a life than I do. I'm not able to get out much. I can't walk more than one block, I can't drive more than a couple miles. If I blog it means not sending out emails. If I send out emails I can't blog. Each decision I make about something I do involves sacrificing something else. Unfortunately it means I can be perceived as flaky by people who don't have this and then there's the silent punishment for not being able to respond in a timely manner.

I miss by blogging friends or maybe I simply misjudged. It wouldn't be the first time since I've gotten sick that I've misjudged peoples intentions. Nor is it the first time that people have disappeared. I'm used to it by now from people who aren't sick. Sadly I've come to expect it from healthy people. I just didn't expect this sort of response from my peers. I didn't expect the comments or emails(the supportive ones I love). I try not to let it but I do find them hurtful. I wasn't going to post about it but I think I'm just too raw at this point from not feeling well, the lack of sleep, etc...I can't shake the feelings. It's hard to have thick skin when I don't feel well. Plus I'm pretty sensitive to feeling on the periphery. It's an old wound.

But I refuse to put aside my enthusiasm for what is occurring at The Whittmore Peterson Institute nor will I stop blogging about it. I've read on message boards where a few people are saying that the pharmaceutical industry just wants more money and that they will capitalize on this. You know what I say to that? GREAT! Because it means there will be more research into finding medications that will help us. I'm not naive about profit motivations. I worked in San Franciso since before the AIDS epidemic. I lost many friends to that disease. Then they discovered that the retrovirus HIV. It wasn't too long after that the antiretroviral drugs came out. Now they are able to stop HIV in its tracks. People are living with HIV now rather than dying from it. People are dying from ME/CFS too.

The Whittemore Peterson Institue has been able to examine live XMRV in vitro. That means they can start testing treatmens on the live virus. Will this be an answer for everyone with ME/CFS? That remains to be seen. Am I excited to possibly have a deadly retrovirus? Absolutely not. Whether its years or sooner I am hopeful that we will get answers.

From the Reno Gazette :

Judy Mikovits remembers that “eureka” moment when she realized that she and her team of researchers at the Whittemore-Peterson Institute in Reno had discovered a new retrovirus that could lead to a possible treatment, even a vaccine, to combat Chronic Fatigue Syndrome.

“It was January 22, and we were in a San Diego restaurant called the Yard House,” said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the world’s leading virologists.

“We kept waiting for them to say something,” Mikovits said. “I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, ‘Well, this is going to change their world.’”

And it has.

XMRV Study Starting

2009-10-27T17:10:00.000-07:00

NOTE: PLEASE DO NOT REPOST WITHOUT PERMISSION

I don't mind the info being reposted on blogs. Everyone has been wonderful about asking and I feel like we all help each other out with things but please ask if you are wanting to post on a message board.

I received a phone call from my doctor's office today. They are starting a study to see what XMRV is doing in the body. It will begin next week so I'll be going up on Monday to get my blood drawn.

I've been worried about how I was going to get the money together to get tested. Now I don't have to worry because they are going to send the blood to WPI (or VIP dx labs which uses the same technology that WPI did in the original study). I will get tested for both active and latent XMRV and it will not cost me a thing! As I mentioned in a previous post both tests cost $650. The study will also involve filling out a questionnaire. It will take a couple months before the results are in but that's fine with me.

Apparently Dr. Mikovitz is very interested in the population that is served by my doctor's office. I'm feeling very grateful for my doctor and even more grateful for Dr. Mikovitz and even more grateful for Andrea Whittemore Goad and her family. If it weren't for them we would still be in the dark ages when it comes to this disease.

Changing subjects: I won't be continuing the Cipro. I took my third pill this morning and had terrible dizziness along with terrible anxiety and a few heart palpitations which doesn't help the anxiety any. I've been feeling horrible all day and just counting down the hours until this stuff leaves my system. I called my podiatrist who changed the prescription to Keflex. I hope the only reaction I have to Keflex is my toe getting better. It has already improved in that I'm having very little pain.

On a completely unrelated note I wanted to share a couple things that fellow ME/CFS'rs have created. One is a website designed by Toni . I always look up blogs that people who comment. I clicked on Toni's name, then clicked on her website fully expecting a blog. What I found instead was beautiful. There is what looks like a painting on the first page. It is stunning. I thought to myself "Wow! Where did she get that painting? I want one!" She painted it! If you want a treat I recommend visiting her website and reading everything on their. There are jewels everywhere. I found it quite moving.

Then there is Pris Campbell's book Sea Trails which can be found at this website It is a story of a life changing journey she took via a 22 foot boat down the east coast. See Pris's blog Song's To A Midnight Sky to read more and to read her moving poems (she is also an accomplished poet). I read a couple excerpts from her book and was so thrilled I purchased a copy for myself and a couple for gifts.

These are just two people who I find inspirational. They also give me hope because both are about as ill as I am and they both created beautiful things. I think I might start mentioning other people's creative blogs here as well.

There is so much pain and suffering in our ME/CFS community but also so much beauty, compassion, wisdom, and kindness.

First Three Days on Low Dose Naltrexone (LDN)

2009-10-26T14:40:00.000-07:00

The liquid version of LDN arrived on Friday. Eager to start I took a full 3 ml (which equals 3 mg) at about 9:30 Friday night. That was a mistake because I was up the entire night finally falling into a fitful sleep at about 6:30 Saturday morning for 2.5 hours. I started doing some research although it was hard to take in with after a week of poor sleep followed by a night of no sleep.

Here's what happened though. I was starting in on a big crash again on Friday feeling very "viral" (beyond exhausted, chills, sweating, etc). Saturday even though I didn't sleep there was no trace of the symptoms I felt the previous day. I also felt a shift in my mood. I felt like I had a bit of energy too in spite of the poor sleep. And it seemed like it helped my cognitive functioning a bit.

I decided to take 3 mg again on Saturday but this time I took it at 3 pm. I had difficulty sleeping Saturday but for a different reason. Saturday night I woke up with a lot of pain around an ingrown toenail. I was bummed because I knew it was infected. The previous 5-6 months I've had a very low grade infection and only in a small spot. It would go away once I soaked in it epsom salts a couple times per day.

But just like what occurred when I started the simplified methylation protocol it seems the LDN might have shifted my immune system which brought the smouldering infection to a full blown one which is a good thing in terms of maybe my body will finally get rid of it now. By Sunday my toe was an angry red and swollen along the side of the nail. It was also very painful. Sunday night the entire toe was red which raised my anxiety level.

Today I was able to get in to see the podiatrist thank goodness. This morning the toe had some pus and blood. The podiatrist couldn't even touch one part of the toe because it was too painful so he shot me up with a local anesthetic and trimmed aboutu 50% of the toenail away. I happened to glance at my toe and was surprised at the amount of blood there was. Not the best moment to have glanced at it but I didn't faint. He put me on Cipro which I'm not a fan of because it can cause permanent tendon damage. I'm also a little worried about my gallbladder. Going through lyme treatments last year caused my gallbladder to become inflamed. It hasn't been the same since so I'm hoping it will survive a couple weeks on Cipro.

Getting back to LDN-I took 2.5mg yesterday afternoon and slept a tiny bit better last night but was awakened early this morning with bad anxiety and a wired feeling. Clearly starting out at a dose of 3mg is too much for me. I think for anyone who is sensitive to medications its best to start at a low dose and work up to it. So far, I've not had huge sensitivity issues with meds so I was surprised.

Today I'll take 1.5 mg and see how that goes tonight.

What I've been reading about LDN has been encouraging. Based on my response so far I think this is going to bring me more improvements so I'm feeling encouraged.

I don't know if this is related but I noticed yesterday that I have swollen and painful lymph nodes right near my armpit. I'm a little concerned about this because its a new thing and I've lost about 15 pounds in the past 7 weeks. I'm struggling with my appetite again and I don't like it so I'm trying to eat small meals throughout the day.

I haven't really noticed anything from the Artemisinin. I'm now on a 7 day break from it. It's kind of funny to me that I'm back on lyme treatments (Cipro is used to treat Bartonella and Artemisinin for Babesia) but I'm not treating lyme or its co-infections. It will be interesting to see what happens while on these two lyme treatments that aren't for lyme.

So Close Yet So Far

2009-10-23T17:52:00.000-07:00

There's lots to catch up on. I feel the usual slight frustration knowing that my cognitive faculties aren't all there. When I was in school or writing my dissertation I'd get a great feeling when I felt like I expressed exactly what I wanted to say. The word finding problems as well as problems with short term memory make it more difficult to write. Writing also makes me more self-conscious of my cognitive difficulties. There are many, many people with ME/CFS who have written books, articles, poetry, music, etc..Not to mention Laura Hillenbrand who wrote Sea Bisquit (and has another book she is finishing!) while ill. When I read others' blogs etc...I feel hopeful that I might experience a return of some cognitive functioning. I already have. But I want more.

I'm a little burned out about some things. One of them is ME/CFS message boards. A little while ago I put up a post on my blog regarding testing. I got the information from someone who somehow manages to find out these things and had permission to repost. I thought it would be helpful for people who wanted to get tested. I was surprised when I found my post quoted word for word on a message board. Then I saw it on more message boards and then Prohealth had something on their website and mentioned this blog. That's what got me upset. Prohealth did not contact me asking ofr permission to repost. I was a bit surprised that they would copy someone's blog and not ask for permsission to repost. Then the piece that Prohealth did got reposted on various lists which greatly increased traffic to my blog. I should be happy about it but instead I feel intimidated, a bit embarrassed and caught unawares. I feel like I do when I dart outside in my pj's to get the paper thinking and hoping no one would see me but just as I'm outside my door a large busload of people drive by and there I am-outside in my pj's. And it's 3:00 in the afternoon.

So I stopped posting about anything personal because I felt like people don't want to hear about the emotional aspect of living with this horrid disease but would rather hear about the latest updates on XMRV. I had to remind myself why I started this blog in the first place.

I started this blog about six months after I was diagnosed in order to talk about what is was like to have this, to track my progress, symptoms, and responses to various treatments. If I had to tell someone what this blog was about I would say its about the emotional aspects of adjusting to living with a devastating and crippling chronic illness that took my ability to live my life (the way I want to) away. It took away my hopes, my dreams, and my beloved career. This blog is a place for me to express what it's like to live like this.

I feel like I had reached a place of peaceful acceptance right around my birthday. I'd fallen into sort of a rhythm again. It was nice not to be so consumed by grief, shock, and despair. I was feeling good about the improvements gained from various treatments.

Then the news about XMRV came out and I was swept away. I crashed and burned from all the reading, research, phone calls, etc.. that I did. About a week after the announcement I found myself feeling strangely agitated and angry but couldn't figure out why. I knew I was crashing and last week had a low grade fever off and on but that didn't explain the agitation/anger. I finally realized that I was having an intense experience of "we are so close but so far."

I do feel that this is a big player in our disease, probably the driver but that doesn't mean I'm going to get well now. The news opens doors, ones that desperately need to be opened. That so close but so far feeling has reawakened the grief in me and a deep longing to return to my career. I cried for a long time last night about it.

I started Artemisinin on Tuesday. My ME/CFS doctor said it had antiviral properties but I'm having a hard time finding anything about it having antiviral properties on the internet. It's helpful for malaria, babesia, and parasites but viruses??? I am concerned about liver toxicity as it can cause hepatitis.

Tonight I'll start Low Dose Naltrexone. Hopefully that will help. I have no idea what to expect from it but I'm encouraged by what I've been reading.

Today I've been feeling very much like I'm in a bad viral flare again with chills, etc...

My SSDI attorney heard about XMRV and wants me to get tested for it. I heard from the Court in early September. They wanted additonal records to see if they could make a determination without me having to go to Court. This is routine. My attorney said I'll have to go to court because there isn't enough evidence for them to make a ruling on the record. Unfortunately, everything is delayed because my ME/CFS doctor is too busy to fill out the SSDI forms (its been one month now). My attorney is frustrated at the lack of response and has sent two requests to no avail. I told my attorney about my second doctor dying. He was in a pretty bad mood the day I spoke with him. He said "you had ANOTHER doctor die?" in a tone that was somewhat blaming.

My car isn't working-the battery keeps dying. I just find that so symbolic. I've been having problems with the car battery dying ever since I got ill. What's a real drag about not having a car is I can't go to any doctor's appts right now nor can I follow through on the sleep study a doctor ordered etc...I'm feeling even more housebound and isolated as a result. Not that I can drive far but I can only walk a block so driving is kind of critical. Taking the bus isn't an option until the orthostatic intolerance has eased up a bit more. I might need to increase my Pindolol because I'm getting heart palps again.

My dad has a reoccurrence of prostate cancer and chronic lymphocytic leukemia. I told him about XMRV. He was going to bring the information to his oncologist. Luckily he is responding to treatments. Given my family history I would be very surprised if I don't end up being positive for XMRV. And that isn't good news.

I

Update-XMRV Testing

2009-10-15T14:34:00.000-07:00

I just spoke with VIP Labs again due to some conflicting information I've been getting.

They are now saying that they are about 30-45 days away from releasing the test because they need to get the test licensed and determine quality control and validation (that the test actually tests for what it says it tests for).

I'm not sure why I and others who contacted them were originally told the test was available now but I think its a good thing that they are being cautious and making sure its a valid and reliable test.

Strange Times

2009-10-14T16:31:00.000-07:00

I'm in another very broken sleep cycle and feel fried from it. It makes me a little nervous when this occurs because it usually means a crash is in the works. Add the broken sleep with increased tinnutis, severe muscle pain, and a new symptom-muscle spasms-and you have the makings of some fun days. The fatigue from not sleeping well makes the cognitive issues worse so I hope that I remember to say all that I'm wanting to in this blog post.

I think I've mentioned before that my primary care physician was also an HIV/AIDS specialist. I say "was" because I found out Monday that he died last week from a pulmonary embolism. I had printed out the article about XMRV and went to his office on Monday to talk to him about it knowing that he would help me sort it all out. I had also hoped that he would have some ideas about treatments.

It's very unnerving because Dr. Scott is the second primary care doctor that I've had die in less than a year. My previous primary care doctor died the Tuesday before Thanksgiving last year after trying unsuccessfully to get out of a trapped eelevator. He fell to his death.

Dr. Scott told me the first time I saw him that he thought I had either a slow virus or a retrovirus. I wanted to show him the article and tell him that he was right. He was very involved in the HIV/AIDS fight and went to Africa on a monthly basis to provide treatment to AIDS patients there. While I didn't have the close relationship with Dr. Scott that I had with Dr. Kliman it is upsetting nevertheless.

I spoke with my ME/CFS doctor this week about XMRV. He is cautiously optimistic. They are in contact with WPI as well as other ME/CFS doctors throughout the country trying to figure this stuff out. They will be one of the doctor's offices who will be providing unofficial experimental treatments for XMRV so they are putting systems in place to accomodate everything coming their way.
It's worth noting that the AIDS epidemic occurred for some time before the HIV virus responsible for AIDS was discovered. Getting a diagnosis of HIV used to mean a death sentence but now with the medications they can render the virus virtually undetectable. Even though the retro virus is still there it is stopped in its tracks with the anti retroviral medications. This is why I'm hopeful.

Heres an interesting article about the discovery of the HIV virus. Apparently, one researcher thought it was HTLV which is the same retrovirus that DeFreitas found in 1991 in relation to ME/CFS.

The problem with these medications are the cost and side effects. The medications have to be taken daily and you can't miss a dose (even though people do). It's no walk in the park. You know what though-I don't care. I'll be a guinea pig. I told my doctor to put my name on the list for treatment. I want my life back. If I can't have it all back I'd settle for 50%.

I've come a long way since starting treatments for this but I was so far down in terms of functioning that I have a long way to go. One year ago I was basically bedbound with the few exceptions of being able to get out for a very, very short time a couple times per month. Now I can sit up for much longer periods of time, I can get out of the house a couple times per week and my bad days are nowhere near as bad as they used to be.

I know and have known many people with HIV. I lost many friends to the AIDS epidemic. I've seen the antiretroviral meds give people back their lives. Once living with a death sentence some people have had to adjust to living life with the promise of a future.

There is another treatment that is showing promise for ME/CFS patients. I think its pretty well known in the ME community that there is a correlation between ME/CFS and the lymphomas. There is a paper that was published that talks about a three patients who had both ME/CFS and non-Hodgkins Lymphoma. While undergoing treatment with Rituxan they had significant improvement in their ME/CFS symptoms! The only problem is the improvement is temporary. Once they relapsed again they were again administered Rituxan and had the same result. I'm wondering if this is the medication the WPI referred to when they mentioned that a medication cocktail might include anti-inflammatory medications, anti retroviral meds, and cancer meds. Heres the link to the article: BMC Neurology 2009, 9:28 doi:10.1186/1471-2377-9-28

As far as my own treatment goes I will be starting Arteminisin and Low Dose Naltrexone. The Arteminisin I'll take for 7 days then go off it for 7 days. Apparently with Arteminisin the body stops processing it after 7 days so you have to stop in order to trick the body into processing it again. We talked about other antivirals but decided on this because it has such a broad application. For those who don't know Arteminisin is used to treat malaria, parasites, and viruses.

I asked my doctor about my low blood sugar readings. While on Valcyte my blood glucose was on the higher side but off Valcyte it is consistantly low. He said that its likely that my cortisol levels are too low even after 18 months of Cortef. So I'll be doubling my dose of Cortef but still within the therapeutic range.

Dr. Cheney and Dr. Bell have both stated that they believe XMRV is likely a causitive factor in ME/CFS. In fact, Dr. Bell has called XMRV "the puppet master."

There's lots of interesting things in the works so lots of reasons for hope. I don't mean hope for a cure but hope for real treatment.

Birthdays

2009-10-06T19:09:00.000-07:00

Today is my birthday or the tail end of it. It's been a good one. Sometimes I use certain dates to mark growth or, now that I'm ill with this, periods of recovery. Two years ago I hadn't been diagnosed and I was so frightened because I knew something was terribly wrong. We spent that weekend up at my dad's. I could not stay awake. I remember standing out on their deck which had been warmed by the sun and saying I have to take a nap right now so I laid down on the deck and fell sound asleep.

Last year I was too ill to do anything outside the apartment. The past two years have been filled with confusion, despair, grief, shock, fear, and denial.

I feel like I have survived and am surviving a huge trauma. I might be severely ill with this but I am surviving and I'm rebuilding my life. I have met some incredibly kind people and I treasure my fellow blogging buddies. I really don't know how I would have survived without all of your collective wisdom, suggestions, and guidance. For that I am deeply grateful.

I'd like to spend this next year practicing gratitude, forgiveness, continuing to work on my spirituality, and letting myself off the hook for getting ill.

Today I was able to go out and do some things, a marked improvement from last year.

It's Been Awhile...

2009-10-01T15:06:00.000-07:00

It's been at least two weeks since I last posted. I wish it was because I was really busy because of huge leaps in improvements. Sadly, Tiger Lily, our 11 year old kitty died two weeks ago. She had an aggressive form of cancer (I think I blogged about it when she was diagnosed three months ago). Since she died I haven't had the heart to post or write or do much of anything. She had such a presence. Now what is present is the absence of her. I've been so sad about losing her and more than a bit tired of grief in all its forms.

Luckily we still have our two other kitties who are 14 and 16. The sixteen year old has chronic renal failure that was diagnosed three years ago with a prognosis of less than one year at the time so she is a miracle kitty.

I'd had a virus that lasted about a month. That left right before Tiger Lily died then I crashed again and am trying to recover again from that.

I'm trying to figure out the next step in treatment. I stopped Valcyte on September 7th because of my liver enzymes. Luckily they have returned to normal. I'm having some funny bloodcounts. My hemoglobin is borderline high as is some other red blood cell test. I have no idea why. Also, my blood sugar levels are swinging going from 110 one week to 56 the next. I find this puzzling. I've read that low cortisol can affect glucose levels. I have increased my hydrocortisone by 2.5mg to help the hypoglycemia.

I tried going back to my acupuncturist but was reminded of the reason why I left him in the first place. He's just not that good. When I first saw him in 2005 I would say he was excellent but he seems to have burned out or something.

I have no idea what sort of practitioner to see next. I feel a bit stuck. Right now my treatment consists of continuing with the simplified methylation protocol, nebulizing glutathione, bufferred Vitamin C, Magnesium Malate and...that's it. Oh, and Amantadine which I'm finding somewhat helpful. I was on Valcyte for 7 1/2 months. It did improve my baseline functioning by about 10%. Not a lot but I'm extremely grateful for any improvements. I haven't had my antibody titers retested which is frustrating to me. I'd like to see what my HHV-6 and EBV levels are right now.

I started Prometrium 4 weeks ago. Shortly after starting that the terrible sweating stopped. Now I get light sweats. I think it's helping my sleep.

I've been able to get out a bit here and there which I always enjoy. My youngest sister came over with her golden retriever on Saturday. I really enjoyed visiting with them both. Her dog could easily be a therapy dog.

I've started reading Anne Rice's book about her return to spirituality. So far so good. I like reading about different perspectives on various spiritual disciplines. I don't believe there is one "right" religion or spiritual discipline but I'm trying to find a place that feels like it fits for me.

I'm behind in emails and other things but I'm not judging myself for it which is a nice change.

So that's my update. Now I'm going to catch up on blogs...

Article on How to Help

2009-09-09T15:03:00.000-07:00

I'm still laid out with this virus and can't do much. I'm trying to pace myself. It's been rough but I'm hanging in there. I've stopped Valcyte and started taking colloidal silver yesterday in the hopes of stopping this virus in its tracks and give my body a break from Valcyte. I think its helping because I'm able to post this today.

I found this article I had saved some time ago but have no idea where I found it so I can't cite the source.

It's hard to know how to help people like us but I found this article to be a good one.

I'm behind on emails, blogs, blogging but hope to catch up soon. More later this week (I hope)...

_______________________________________________

A View From Outside: How To Help A Person with CFIDS (PWC)

by Jean Mosher, R.N.

Twenty-five years ago I was working as a private duty nurse, and it was at this time I met a family member of one of my patients. She was very energetic and involved with life and is the most creative person I know.

As I recall, she had been diagnosed with myasthenia gravis and other assorted illnesses. Nothing was clear-cut and no definitive diagnosis was made for a very long time. It took some 12 years for that to happen.

As our friendship grew and I learned more about her medical history, I heard of the disease that was then called Chronic Epstein-Barr Virus, now referred to as Chronic Fatigue Syndrome CFS) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). Although Iam the nurse, I have learned a lot from my friend, now supposedly "the patient."

Observations About Energy: "Talking Hurts"
CFIDS is an all-encompassing and all-consuming disease. I hear about and have seen the consequences of brain dysfunction and the inability to comprehend simple information. Ordinary tasks in cluding walking can be very arduous for a person with CFIDS (PWC). It is not at all unusual to lose muscle strength and fall at any time. I have seen this in my friend. I hear that energy is very valuable, almost a gold standard for these patients. The energy it takes to even talk on the telephone is not easy, complicated by the persistent sore throat. Talking hurts. There are sleep disturbances. Going to bed does not mean "going to sleep." I hear of nights that no sleep was possible or, more usual, finally getting to sleep about 6 a.m. She also has times where her sleep is disturbed and can wake every couple of hours. After sleeping 10, 12, or even 14 hours, she still is exhausted. Sleep studies seemingly have documented this disturbance but relief does not seem to be within her easy grasp.

Finding a time to visit a person with CFIDS also is difficult. If the person has some energy, it may be more important, as they prioritize their time, for them to take a shower, feed themselves, do laundry, when possible, or see doctors. Social interplay takes work. Perhaps only one or two requirements for daily living can be accomplished and the remainder put off for a later date. I have found that people who are that ill usually do not use energy to make telephone calls for help, for they are too debilitated and are in bed.

A busy week for my friend would be to have three days outside the home, perhaps taken up with medical appointments. The rest of the week she is in bed. A good day would be to have enough energy to accomplish something for a two-, three-, or (pushing) a four-hour period in one day, including eating a meal and the preparation that goes with it. There are times my friend is too ill to eat, because as she explains it, it takes too much energy to prepare meals. Money is tight—and fast or prepared foods not an option.

Times of the year are also very important for my friend. The amount of sun and the temperature of the day have significant repercussions, as do the sudden barometric pressure changes. She does better when it is warmer and there is more light; she suffers from Seasonal Affective Disorder. This seems to aggravate the CFIDS symptoms.

What Friends and Family Can Do
How to help as an outsider? To help a person with CFIDS is not to say: "Call me if you need me." That call most likely won't come. No energy to reach out. To help is to enable independence, recognizing that every motion is energy and little energy is available. Doing shopping, picking up prescriptions, doing an errand, making a meal are all valuable aids for anyone with CFIDS. Even offer to change a bed or clean. Help make phone calls, mail a letter, or offer to fill in forms when necessary; any little thing to a well person is a mountain to climb for a PWC.

It took time before I understood the brain dysfunction. At first I felt rejected, especially when my calls were not returned. I was looking at the relationship from my own perspective. I made a call; I expected a return call. I was a slow learner, but eventually, I came to understand when my friend would say she couldn't process information. Her brain had effectively shut down and she knew what she was talking about. There have been many times she was too ill to speak on the phone. I learned to respect that and now check with her when we settle into a conversation. Sometimes it will start out fine, and a few minutes into it, she can't follow all the details and will tell me she "can't compute." I have learned this is part of the process of the illness and no longer take it personally. I have also learned to listen to her and realize that as much as I may need to talk, I will wear her out and she will not hear anything. She will call me when she has the energy. Our friendship is not a one-way street, but a crooked road I have learned to negotiate.

Navigating The Crooked Road
Over time, I have come to understand the language of CFIDS. Everything seems to be measured in energy units. When I tell my friend of how many miles I have walked to get somewhere, she is exhausted just relating to it. I would suggest that others be sensitive to CFIDS lifestyles and the need for flexibility. PWCs do not always know when they wake up what the day will hold for them. Their lifestyle has been dramatically affected, if they have a life at all. I have worked with cancer patients, and I see them doing better than the CFIDS patients I know. Still, while this illness may put limitations on my friend, our honest communication has not diminished our friendship, or the essence of her.

To be a friend, I call regularly. I understand that if I get the answering machine, my friend can either be out, or out of it. Our mutual under standing is that she doesn't have to feel pres sured into returning my calls, and I want her to know I call to check in so she knows someone cares.

Be a friend to a CFIDS patient. It is worth the work. It takes flexibility, understanding, and patience, but it is worth it. It is not enough to be willing to help, you must act on that willingness. These are not dispensable people, but rather people who cannot be dispensed with. The spirit of a person never really leaves them, whatever their physical condition, and if the friendship is built on that and on love, you've got a winner.

Still Here

2009-09-01T16:08:00.000-07:00

I thought I'd post a short entry. I want to thank everyone for your comments. They were thoughtful and caring and right on the money.I followed every suggestion and have signed up for various message lists including a gratitude list, affirmation groups, etc...

I'm glad no one told me I just need to think positive. It's hard to think positive when ill and having neurological issues. Actually, here's a positive thought: "I'm positive that I'm very ill."

When I feel a little better I'm going to write about a post an article on the dangers of the positive thinking (when its extreme).

The truth is I'm using every tool available to deal with all of this.

And to Vanessa who came over on Saturday and a new friend who called me out of concern Thursday-thank you for your support, concern, and validation. It really helped me clarify and solidify things.

I've been feeling very ill since a week ago Monday. I don't know if its another virus or a flare up or what. I've been reading other people's blogs as well as a thread on lymenet and find it rather fascinating how many of us are suffering from a flare. I wonder why.

I have a return of night sweats as well as terrible sweating throughout the day. I get a bout of chills but only on one part of my body then it will move to another part. For example my calf will get the chills, then later it might be my thigh etc...It's quite strange. I'm going through two t-shirts per day.

The sweating could be do to five things: 1) viral infection 2) bacterial infection 2) babesia 3) decline in autonomic nervous system functioning 4) messed up hormones, and/or 5) detox (maybe the methylation protocol is starting to kick in?).

I'm so fatigued it's making me dizzy and faint at times. It really feels like a virus.

Yesterday I had my brain PET Scan. On Sunday I was supposed to eat a high protein diet consisting of absolutely no sugar, milk, fruits, veggies, carbohydrates. I basically ate nuts and a little turkey.

I hope to get the results soon. The one good thing about this level of fatigue was that I had little energy to get nervous.

Saturday evening our kitty had a mild seizure.

To sum it all up. I feel bad physically and still having a rough time emotionally but I really think its this latest virus is doing a number on me.

Volunteers Needed for Study-Can earn $50.00!

2009-08-28T11:51:00.000-07:00

Unexplained Chronic Fatigue Questionnaire Study - Volunteers Needed

From Kathleen O'Connor at
The University of Utah:
Participants wanted for study of chronic fatigue

Individuals who have had severe, unexplained fatigue for at least six months and who have no serious abnormalities on medical tests are wanted for a study of chronic fatigue. Patients who qualify for the study will be asked to complete three questionnaires over a six month period. Participating in the study will not alter the treatment that your physician gives you. The purpose of the study is to evaluate whether patients treated by certain types of physicians improve faster than patients treated by other types of physicians. If you may be interested in participating in this study, please contact the study coordinator, Kathleen O’Connor at (801) 587-4741. For more information email kathleen.oconnor@ hci.utah.edu or visit our website at https://hci- as2.hci.utah. edu/CFSurvey/ app.

[An excerpt under the "About" section at the given website:

"There will be no costs to you for participating in the study.

We will send you $25 if you complete two questionnaires, one given to you at the time you enroll and a second given to you three months later. We will send another $25 to you for completing a questionnaire six months after you enroll. If you need to get results of your laboratory tests from physicians other than the physician who told you about this study, we will give you an additional $15 for giving us the results of all of these tests."]

Kathleen O'Connor, MSc
Research Coordinator
Health Services Research Dept.
Huntsman Cancer Institute
University of Utah
#4144 - 2000 Circle of Hope
Salt Lake City, UT
84112-5550
Ph: (801) 587-4741
Mobile: (801) 949-1321
Fax: (801) 585-0900
Email: kathleen.oconnor@ hci.utah. edu

Bad Day

2009-08-27T13:14:00.000-07:00

I'm having a pretty bad day. I find myself wanting to start off this post with an apology for another depressing post but I trust most people will understand. I'm trying to figure things out. Today is one of those days where I want to throw in the towel. I found myself asking my mom "is it okay to go now? I'm tired of this." When she was sick she said to me "I wish I could take you with me." I have often wondered if she had a premonition of my future.

There are many things I can't talk about in this blog. God forbid I tell the truth about some things. God forbid I risk the wrath of being further alienated from certain people who continue to use me as a scapegoat. Being sick and cognitively challenged makes if difficult for me to fight so I try to back away from arguements. I hate them. They drain my energy and deplete me. I hate when people refuse to stop when I say I'm too tired to do this anymore. Not to mention that fighting stresses my adrenals and that I am unable to think very clearly.

It's quite risky for me to be blogging today because I'm so at my limit with things that I would just like to spill the beans and tell all.

I'm filled with a deep grief and a profound longing to get out of this place. The summer held promises of more contact with family, reconnection with friends. Unfortunately nothing has panned out. I am trying so hard to ease my sense of isolation and loneliness but my efforts seem futile. I fear there is something basially unloveable about me that makes people turn away. I have made mistakes. Maybe my emails have sounded strange or maybe I haven't been the most timely in my response. I don't think people understand the difficulty of composing an email for people like us. When I'm writing an email I have to search my mind for the right words and often end up using one that doesn't quite fit but its the best I can do at the time.

But emailing isn't what I wanted to talk about. That's for another blog post. I get how difficult it is for anyone to be in relationship with someone who has this illness. The back and forthness of communicating via email gets unbalanced because when one's energy is completely drained by the simple activities of daily living there often isn't energy to also compose an email. I try to do my best at responding in a timely manner but I'm not able to keep up with a fast paced society that expects quick responses.

But to sit back in silence and gossip and judge and get angry at someone who is this disabled is plain unfair.

I feel like I have to put up with things that are intolerable because I'm sick. It's as if I feel I've lost my rights because I have become disabled. Certain people reading this will disagree and think "what is she talking about? I email her. I'm in contact. God she expects too much." No actually, you don't. Let's see I've seen my dad for a total of 4 hours in the past two years. I've had maybe 3 phone conversations. I get no response to my emails, especially if I talk about the difficulties of this illness. How dare I not be positive. His wife? Well, she's a good person and I like her but she has made zero attempts to have any sort of personal relationship with any of us and that makes me sad. I best stop here. Better to pretend everything is good and fine and that I'm actually part of this family. The truth is I'm not. I'm on the periphery. I know what the excuses would be-that I've said its hard to talk on the phone. Well, it is but that doesn't mean don't ever call. I've made mistakes. I've tried to apologize. I've tried to reconnect. I miss them. But I think its time to accept what is and let myself grieve for what will never be.

I wonder where God is and why I can't feel his presence. I long for that. I have been searching for a spiritual practice that works for me. I want a deep sense of spiritual connection. I'm coming to realize though that my spiritual practice just might well be this illness. It has brought me to my knees. It is likely that it's my greatest teacher and cruelest therapist.

To be fair not everyone has turned away. Two people have remained in contact when they can and I am deeply grateful to be part of an online community.

Perhaps today's mood was set off by events last night. Or another night of fitful sleep. Most likely it was triggered by a dream I had.

I dreamt I was in with a large group of people but I felt isolated. There was a sense of feeling trapped in a potentially dangerous situation. I think I may have been around with kids who in the juvie system. There was a sense of chaos. I was alone trying to figure a way out. Suddenly Bobby appears. I'm surprised to see him because I know he is dead but here is is in front of me-dead but alive. He looked like he did when he was sober. I rushed up to him and threw my arms around him in a hug. He didn't respond. I back away and he was just looking at me not saying a word. I said I heard you relapsed on heroin but he just looked at me. I became frightened and wondered if he was a vampire but I was so glad to see him I didn't want to leave his side. I kept following him through the chaos. He never said a word just stared at me. It was as if he couldn't communicate with me.I woke up out of this dream missing him intensely. It set loose all the stored up grief I've tried to stuff down. I've spent most of the day crying.

I didn't go to his memorial. It would have been too much for me physically. Partly I didn't want to go because I didn't want to hear more stories of how he was in the end. The newspaper articles painted a grim picture. His death was horrible and brutal. He was strangled, stabbed, and bludgeoned to death. Sometimes I find those images starting to make my way into my mind and I have to stop them. I'm glad that at least in my dream he looked healthy. Like his old self.

And then there is one of my kitties who is slowly getting worse from the cancer. Mammary duct cancer is aggressive. It has broken through her skin creating an abcess. She is on antibiotics. The other thing is the cancer often spreads to the lungs so the vet said to watch out for her coughing and stuff. Yesterday while napping I awoken to the sound of her coughing. It broke my heart and I cried myself back to sleep.

I think that's it for now. It's scary putting this stuff out there but I have to.

You know what is troubling? My story is not unique by any means. This is the story of people who have a severe chronic illness (though not everyones story by any means-some people deal with this much more gracefull and skillfully than I). I'm still in the phase of getting used to it.

Hmm.I just found this quote:

This limbo-which lasted for twelve timeless days-started as torment, but turned into patience, started as hell, but became a purgatorial dark night, humbled me, horribly, took away hope, but then sweetly-gently, returned it to me thousandfold, transformed.

--Oliver Sacks

Article on C3a and C4a

2009-08-25T20:01:00.000-07:00

I found a good article on C4a and C3a for anyone who is interested. Here is the link: Click here

More later....

In Search of Answers

2009-08-25T15:16:00.000-07:00

I have a hard time trusting doctors. I didn't have issues with trusting them until my mom got sick and died 44 days after being diagnosed with cancer. The first sign that something was wrong was elevated liver enzymes. I know because I would sit late into the night with all her test results laid out over the table studying them trying to figure out what the hell happened. It was my way of trying to exert some control over a tragic situation. She died August 14-years ago. The first sign that something was wrong was the prior November when she had elevated liver enzymes. I always wonder what would have happened had her doctor run more tests to find out what was wrong. I've learned to stay out away from those thoughts because when I start thinking about it I still get angry. My mom died because she had an inompentant doctor who was more interested in making money by following managed care guidelines then he was in providing proper patient care. They don't know where the primary site of her cancer was but it metastisized to her liver.

Then last year my dad's reoccurence of prostate cancer was misdiagnosed. It spread to his bladder causing his bladder to throw blood clots. He ended up in ER 5 times and was misdiagnosed each time. Luckily for him he switched doctors(and states for that matter) and is responding to treatment.

So I have good reason for not trusting doctors. I must confess this clouds my judgment at times.

This morning I spoke with my local doctor's nurse who told me my liver enzymes were normal. Unbelievable. He even said they could be caused by drinking. I told him I haven't had a drink for 18 years. I said that I've seen the results and they don't seem normal to me. He said he would bring it up with the doctor. Did he ask if my liver hurt or that I've had weight loss? Nope. It also turns out they never sent over the request for the Brain Spect Scan nor had they contacted my insurance company to get prior authorization (thank goodness for the technician I spoke to at the Spect Scan Dept). This doctor is so sure I have a fatal neurodegenerative disease one would think they would have made sure they followed through. I realize doctor's offices are busy and frankly the test is unnecessary because I have ME not ALS or the other things they mentioned. I want to see what's going on in my brain and, these other things have never been ruled out so I think its important to get the test done. I understand why the ALS concern though because they are seeing some of the symptoms (slurred speech, muscle weakness).

In the meantime I received an email from my ME doctor's office saying they wanted to speak to me asap. They called me shortly after I spoke to the nurse at my local doctor's office. My ME doctor said that in their experience with Valcyte they have not had people's liver enzymes go up after 7 monthsh on Valcyte. He wonders if something else is going on with my liver or maybe it was a randome spike (just like my mom). He advised me to restart Valcyte and retest my liver function in one week. If it has gone up then stop Valcyte. Or, if I start feeling nauseaus or have pain in my liver. I interrupted him to say I'm having pain in my liver. Last night it felt like it was throbbing. It was a really weird pain. I'll restart Valcyte and retest in a week. I actually start feeling worse when I'm off Valcyte so I'm fine with going back on.

Even though I'm determined and a fighter there's a part of me that almost doesn't care anymore. So I get cancer and die or I have a heart attack and die. At least I won't have to fight all the time for everything. Or feel the loss of my past and my future. Or feel the friggin exhaustion, the cognitive impairments, the silence of family and friends, the marginalization this illness creates. I won't have to experience the pain I feel when trying to reconnect with people and then tell them about this illness only to never hear from them again. Unfortunately this has been my experience of late with three people, maybe four (I'm hoping the fourth person is just busy). So while I'm fighting hard, at a deeper level I'm getting kind of tired of fighting on my own all the time. I'm actually no longer afraid of death. Sometimes, as I'm laying awake at night unable to sleep I think of what it would be like to be free of this body that no longer works. Sometimes that's what calms my mind down-the thought that I don't have to live this way forever. Really though I don't want to die. But I can't help but thinking about it. After all, my dissertation was about the death experience (both literal and psychological) and its relation to transformation. I went through all of Jung and Freud's writings, took notes on everything they said about death, and analyzed it.

But I digress. I got more test results in the mail. This time it was my C4a and VIP (vasoactive intestinal polypeptide). My C4a was 8232. The high end of the range is 2830. Last year it was in the normal range. My VIP levels were so low they were undetectable (reference range is 23-63). I asked my ME doctor about them and he didn't have much to say. C4a has been used by some ME and LLMD's as a diagnostic indicator for mold or lyme. I would have liked it if my ME doctor would have said "aha, this is what this means" but instead he said "we really don't know what it means but I fully expected this to happen." Well, I didn't! Something is needing to be treated. If lyme is running rampant I'd like to treat that. If it's mold then I need to do something. If its something else...I'd like to figure it out. This is what Dr. Shoemake has to say about it:

Patients with certain HLA genotypes (immunity related genes) may develop inappropriate immune responses which may include antibodies to: myelin basic protein (often from fungal infections), gliadin (wheat-like allergy), and cardiolipins (affects blood clotting). Most devestatingly of all, the complement immune system becomes chronically activated resulting in high levels of C4a.

My level of functioning is getting better in some ways but my neurological functioning is getting worse. My anxiety is skyrocketing again as is sound sensitivity, smell, and my insomnia is really, really bad. I wake up everymorning around 5am with anxiety pounding away (that is if I'm lucky enough to be able to sleep until 5 am.)

So I'm trying to figure it all out. Every ME patient is really on their own to figure this stuff out. Thank God we have each other to talk to, bounce things off of each other, and learn from each other.

More and more I'm coming to the conclusion that ME is primarily a neurological disease that affects the hypothalamus, pituitary gland, frontal lobe, brain stem, and other structures in the brain. Because the brain isn't working right it leads to other problems like low cortisol, low hormones in general, immune system problems which cause infections to reactivate, inflammation to develop, the dysuatonomias, etc...It's just an uneducated guess. But then how does the methylation cyle fit in? I've been doing the simplified protocol for over a year now....with little to show for it. Does the methylation protocol really help anyone? I've heard it does but I'm not seeing it nor are my friends.

In previous entries in my blog I'd write about ME using either ME/CFS or when I'm particularly struggling just simple CFS. From now on I'll be using ME for Myalgic Encephalomyelitis. Because this is what I have. I don't have CFS I have ME.

In the meantime I'm waiting for a packet from Dr. Peterson's office and I'm trying to find contact information for Dr. Kogelnik who was the post doc fellow working with Dr. Montoya. Apparently he has opened his own practice and has started a database to input info from ME patients.

In peace and Wellness,

Stopping Valcyte

2009-08-22T11:02:00.000-07:00

I have to say I'm very grateful that I went to the local doctor who decided to run CBC and CMP both of which are supposed to be done monthly while on Valcyte. My ME/CFS doctor told me I didn't need anymore bloodwork for the next 3 months on Valcyte. I have been uncomfortable with this and have no idea what he was thinking when he told me that. It is irresponsible and unheard of.

I haven't had any labs drawn for the past TWO MONTHS I've been on Valcyte because my doctor didn't think I needed it.It is a dumb thing to do and I don't recommend it. Here's why: My local doctor who is familiar with Valcyte ran the above tests. I got the results this morning. My liver values (AST and ALT) are very high! What is scary for me is because I haven't had labs for the past two months (since June 2) I don't know how long those values have been elevated so I don't know how much damage has been done to my liver.

The other thing is my blood sugar was also elevated and the test stated I have prediabetes. I know of others on Valcyte who have had that happen.

If I hadn't had these tests I would have continued to take Valcyte for the next well two months now all the while causing damage to my liver which could have led to some really bad consequences.

I'm grateful it will be my local doctor handling this. If it was my ME/CFS doctor I don't know that I would have heard anything from him. I would hope so but his doctor skills lately have been...well, sloppy is the word that comes to mind. I fully expect that my local doctor will have me in his office early next week to run more tests to determine the extent of any damage. I'm also confident he will closely monitor my liver values to make sure they go down.

I just can't believe it. I've been feeling extra fatigued along with feeling like my liver is swollen. The swollen liver feeling has been there for at least a month. I've also had pain there but thought it might be gallbladder stuff. I wonder if this is also why I've been having water retention and a general lack of appetite.

This morning I woke up after another night of not sleeping (couldn't go to sleep until after 12, then was up from 3 to 6, then awake again at 9). I had this feeling not to take Valcyte this morning so I didn't. When I checked my email my lab results were there.

This just confirms my decision and gut feeling to change my ME/CFS doctor. I will probably go to another doctor at the same clinic. The other doctor has a solid reputation.

I do think there was Higher Power at work to have led me to the local doctor who ran the tests I needed.

I have no idea what to do in the meantime. Do I take the rest of my medications? I guess I'll look up each one to see if they are processed in the liver.

So my treatment with Valcyte is officially over. I just pray I don't have permanent damage to my liver.

Another Doctor Visit

2009-08-19T18:40:00.000-07:00

I saw a local doctor today (the slow virus one). He specializes in HIV and Infectious Diseases. I didn't sleep well at all last night so I was in even worse shape cognitively today. The physician's assistant shared with me what they were concerned about. He said they also noticed I have odd movements so they want to rule out Parkinson's. I was kind of blown away at how perceptive they are at recognizing neurological symptoms. The p.a. said he doesn't believe in cfs and feels its a wastebasket diagnosis so they are going to run some tests to rule out all the major neurological diseases like ALS (which is my worst fear), MS, Parkinson's, and two others that I can't remember. Right now my diagnosis is frontal lobe dementia.

While I might not agree with the diagnosis I am glad they are running more tests and ones I've been wanting since getting sick-simple things like B12, folic acid, iron (which has never been tested), and others. They are also referring me for a Brain Spect Scan which doesn't involve being in an enclosed space. And then they will refer me to a Neurologist. I've been wanting to see a neurologist for quite some time.

All in all I'm grateful they are running more tests and I'm glad to have other neurological disorders ruled out. Any information is useful. Because I got diagnosed relatively quickly there are a lot of things that never got tested (like B12, iron, etc) that I think are important to test for in any chronic illness.

I have to figure out how to get some sleep. I'm so grateful for people's feedback from my post yesterday. It has made me realize how exhausted I am. All the events of the past few weeks combined with lack of sleep has been slowly taking its toll.

On Saturday we went to the city's Art and Soul Festival. This is something I would not have been able to do 5 months ago. We stayed for almost two hours. It's a festival featuring various musicians. We went to the Gospel stage. Oh my gosh-that music was powerful. I felt it down in my bones. It was beautiful and rich. People were smiling and dancing. I felt this deep sense of joy at being able to be present at this event. I felt at one with everyone. There is nothing like hearing music live. If you like gospel music, anything by the Hawkins family and choir, or the Oakland Interfaith Gospel is wonderful.

I just completely ran out of steam so I'll stop here.

Friday

2009-08-14T17:21:00.000-07:00

I wanted to thank everyone for your thoughts, prayers, and comments about the death of my friend. They all meant a lot to me. I'd respond to everyone individually but I'm not feeling good.

It's been a strange week. All last weekend was taken up by communicating with people about Bobby and what happened to him. I was very grateful to be able to talk to a couple people who were also close with him and found it very helpful. It also brought up a lot of images that I've spent the better part of the rest of the week trying to get out of my head. I'm also trying to put this behind me, as much as that goes against the grain of all my training. I don't want to feel anymore grief. I'm too familiar with that feeling. I don't want to get exhausted anymore by crying. So I'm trying to stuff it. Nothing will change what happened anyway.

Today is the anniversary of my mom's death. I feel mostly numb brought on, in part by all the medications I took last night in attempting to sleep, and partly due to other things. I remember her lying in her recliner and me bringing the phone to her so Bobby could talk to her. She was crying as she handed back the phone to me. When I asked her what happened she told me that Bobby told her not to worry about me because I had a lot of people who loved me and he would look out for me.

Physically I'm a mess. I've been having horrible insomnia and restless leg syndrome of all things! It's not fun to have the restless leg thing! When I got up today my legs actually hurt. In doing some research I've learned what most people already know which is it's a neurological condition. That combined with the POTS, the tinnitus makes me want to see a neurologist because something in my brain is getting worse and not better and I want to know why.

Here's how bad the insomnia has gotten (partly due to the restless leg stuff). Last night in an attempt to sleep I took Remeron, Klonopin, Flexerill, Advil, more Flexerill, an Ativan, gabapentin and two other meds. I tried sleeping in bed, on the recliner, on the couch and the restless leg did not ease up.

Last night gave me insight into how easily a Heath Ledger type of death can occur. I was desperate for sleep and just kept popping pills in the hopes that one would work. Had I had good sleep the past couple weeks it wouldn't be such an issue but my sleep has been bad. If my sleep is bad then I decline physically and I can't afford that.

I spoke to my cfids doctor by phone yesterday and found myself feeling the same frustration I always feel when I speak to him by phone. If yesterday and other phone consults were my only experience with him I would not continue. He originally dismissed my concerns about mold-finally getting it after 8 months of my being exposed to bad mold. He also dismissed my complaints of increasing insomnia as well as the restless leg. Fifty percent of the time I think he's a really good doctor, the other half of the time I'm ready to find a new one. He still hasn't signed my student loan papers that I'd sent him six weeks ago and have reminded him four times now. My student loan is now past due. I received the bill from my doctor's office for yesterday's appointment. They had no problem getting that off in the mail but did they mail my student loan paperwork? Nope!

The other thing which is very concerning to me is my cfids doctor told me I don't need anymore labs done even though I'll be on Valcyte for another three months?!!! That's kind of unheard of because of the toxicity of Valcyte. It makes me nervous to be on this for another three months with zero bloodwork to monitor my liver and blood cell count. He was also unable to tell me what I should be expecting now that I've been on VIP for two weeks. All he said was it wasn't working. I asked what should I expect by now. He said "you would know." Except that I won't. I had a virus last week and I've spent this week not sleeping so how could I feel any better. I'm tired of my doctor getting discouraged with my slow improvements and I shouldn't have to take care of him around it. After all I'm the one living with this.

I spent most of the day on the phone trying to find a new doctor. The neurologists in the area all want a doctor's referral. I'm not going to bother with going through my cfid's doctor's office since the cardiologist referral was such a hassle. I need to find a local doctor anyway. I have an appointment with a local doctor for this coming Tuesday. All I hope is that he listens, will do some blood tests, and refer me to a neurologist.

Here's my updates on treatments:

VIP- I don't think this is doing anything. I would not recommend this treatment until more information is available. It's a big out of pocket expense. From what I've read on other people's blogs-nobody is having much success with this.

Valcyte- I think this continues to help me.

Gupta-I'd recommend this for people who have their sympathetic nervous system in overdrive. I have not been doing this program and need to get back to it.

Methylation Protocol-haven't noticed that it's helping even though I've been on it for over a year. This may take a long time though.

I'm still researching moving to a raw foods diet. My main concerns have to do with protein but the author of the 80/10/10 Diet says there is enough protein. I have some other concerns which I'm researching. My diet has always lacked veggies and fruits.

I'm in a bit of a bad mood with the lack of sleep and all the medications in my system right now. Plus I just don't like August 14 anymore. I probably shouldn't be blogging in my current state but I wanted to at least keep up with my weekly entries.

Wishing you all peace and better health-

Bobby...

2009-08-07T11:52:00.000-07:00

I met Bobby during a job interview in 1993. We clicked and became fast, close friends spanning the next 15 years and bridging various tragedies that beset each of us. He and I worked together,went to grad school, did our pre-doc hours together, and hung out together. He was one of the people in my life who had a great impact on me. He and I cried on each other's shoulders as various relationships would come and go. We laughed together a lot which is something I treasured. We were like sister and brother, best friends, and often joked that if we were straight we would have been married. Bobby is the one who introduced me to my PhD program that we attended together. He was there through my mom's illness and death.

He was also a recovering heroin addict. He relapsed on heroin and I lost contact with him. After becoming sick I began to search for him. I wanted to reconnect with him and prayed that he'd found his way back into the rooms of Narcotics Anonymous again. My attempts to search for him were futile.

This morning I woke up, checked Facebook-was pleased to see people had made friend requests, then checked my other email. There was an email from one of Bobby's friends saying Bobby had been found murdered on July, 28. Whoosh-was the sound I felt as the air was sucked out my my lungs and then my heart fell in pieces to the floor. I haven't been able to stop crying.

Knowing Bobby as deeply as I did makes the way he died even more tragic-at the hands of his lover who then killed himself. Both of them were using crack and heroin.

Next to losing my mom and getting sick, this is a biggie for me. I loved Bobby and missed him terribly after we lost touch. I had looked for him on Facebook but he wasn't there either.

I have phone numbers of people to contact about his death but I can't make the call until I know I won't cry on the phone.

I actually can't talk to anyone right now. The most I can do is write in this blog and hope the sick feeling in my stomach goes away and then hope I can reach out to people because I really need it right now.

After my mom died I'd found a quote by Elizabeth Kuhbler-Ross:

You will not grow if you sit in a beautiful flower garden, But you will grow if you are sick, If you are in pain, if you experience losses, And if you do not put your head in the sand, But take the pain as a gift to you with a very, very specific purpose.

I wish I could have one last hug and one last laugh with my dear friend.

Rambles

2009-08-05T14:15:00.000-07:00

"Fool!" my muse said to me "look in thy heart and write." Phillip Sidney

And now that I've written that quote my mind goes blank as it often does with this illness. I need to write. I find it helpful to give voice to the many things that get stirred up living with this. When I start to blog I often have an idea of what I want to write about but I find I have trouble holding onto thoughts so I often miss getting at the essence of what I want to talk about. I've decided to get a notebook to dedicate just to taking notes from books I read, or ideas I have.

I also have to get over the fact that my writing skills have changed. I hope this will change but I used to speak and write using a lot of metaphors. I've lost that ability since getting sick. I find that when I blog I have to write really fast so I don't forget the things I want to talk about but it doesn't work-I forget anyway.

Something I've been reminded of these past couple days since feeling so bad physically is that when stressed or ill its very normal and natural to regress emotionally. I noticed the past couple weeks when I felt a little better and could handle having visitors, getting out in the world, etc...that I didn't feel so affected by things. I felt more a part of the world. Since feeling so ill these past couple days I find its harder to feel positive about things.

It is difficult to return to this state of being after being able to be out in the world like I did. I just hope the depression doesn't return. I worry about winter coming-I seem to do worse in the winter. It's like I've been ill long enough to know what's coming (which is frightening) but not ill long enough to develop a good tool kit. What I do when things get really difficult emotionally is focus on my breath and stay in the present moment as much as possible. I also turn to music and reading other people's blogs, or poetry, or a book.

I need to figure out a good system for tracking my symptoms along with activity levels, the starting and stopping of various treatments, etc...If I was computer savvy I might be able to set up a database but I'm not computer savvy. I think I need to use this blog more to track these things. It's the original reason why I started this blog.

These are some themes that have come up for me since getting sick and I'd like to write about them over the next few months:

Getting hit with a debilitating chronic illness causes most people to fall into the Abyss. It is a very difficult time but depending on how its handled, tolerating the Abyss can lead to rebirth, and creativity. I think this is why many people with me/cfs write books, poetry, etc...But its hard to tolerate this place and not want to numb oneself.

Memory-Mnemosyne-Muse-Orpheus-Now, when I think of my old life it is with fondness rather than grief but the memories I have are precious to me and sometimes I just savor the memory.

Making the invisible visible.

Living with chronic illness and the Underworld

I've spent the day in bed except to take medications or use the restroom. The past two days I've had absolutely no appetite-I'm having to force myself to get anything down, smells make me sick to my stomach, I'm lightheaded when I stand up, my eyes burn, the hair follicles on my head hurt, I can't focus for very long, I've had a severe headache (unfortunately my lidocaine and ketamine expired)-luckily the headache has eased up quite a bit, my brain feels swollen and full of junk, rotating muscle aches.

I think I'm going to follow my doctor's advice and have him write me a prescription for medical marijuana. He said it helps with sleep, nausea, appetite, etc...

I've decided I need to have some fellow me/csf sufferer's on my Facebook page but I don't know anybody's last name to send an invite to. If you are on Facebook and want to connect you can find me using the following email address: cfswarrior(at)gmail.com.

In peace and Wellness-

Is It The Flu or a Crash?

2009-08-04T13:56:00.000-07:00

I'm pretty much laid out flat on my back today feeling horrible. Doing anything feels like an effort. When I feel this badly I want to figure out what it is so I can do something about it. I find myself wondering did I pick up another virus, is it because I restarted Valcyte, a crash, or what?

I'm also feeling a bit weepy because I feel so lousy.

I had a brain fog moment that I haven't had since starting to get this illness. In the Fall of 07 I was having such terrible problems with brain fog that I had to post signs all over the place reminding me to turn off the stove, water, etc....

Today I put water on the stove to make tea. Then I put on my ipod earphones on and started doing dishes. I was feeling wobbly, achey, all the flulike stuff but I wanted to get the dishes done. I'm listening to a song when suddenly I start hearing a whistle in the background. I thought to myself "that's strange, I never realized this song had that strange whistle in the background. How odd." I continued on with the dishes until the next song came on and what do you know that same whistle was in the next song too! I thought something was wrong with my ipod so I turned it off only to discover it was the tea kettle trying to alert me. :0

Sigh. I hope this virus leaves soon. I feel like I'm about five years old-if that.

Slices of Heaven

2009-08-03T20:06:00.000-07:00

I've had a really great week. I've had enough energy to be able to see people I haven't seen in years-specifically my cousins Katie and David. All of my cousins mean the world to me so seeing them was wonderful. Deep in my being I felt like I was home just being around them. Today my dad, LuAnn, and my sister came over for a couple hours. It was wonderful to see them. I haven't seen my dad or LuAnn since April. Last Tuesday my sister picked me up and brought me to see a medium who communicates with the "spirit world." His name is Bill Coller and he travels around the world to do this. He's from Scotland and had a great Scottish brogue. It was great to see him as well as spend time with my sister in the car (it was about an hour's drive). I also met with a couple people from the area that have ME/CFS. This time there was a new person but two others were feeling too sick to come. It was great to get together with others like me. We'll meet again in two weeks.

I joined Facebook and reconnected with three close friends from high school and college and another close friend from grad school. I've exchanged emails from two of them. Reconnecting with this friend from high school has been surprisingly moving and emotional.

For various reasons I've dropped out of contact with some pretty special people in my life. It's a bad character flaw that has its roots in fear. I've lived so much of my life from a fearful place. I've had to overcome a lot to get where I got to in my old life but I'm not proud of the ways I've acted because I've been afraid. I'm deeply grateful that I've been back in contact with people.

This illness has been relentless in the ways it has made me face all the ugly truths about myself. Being housebound and unable to distract myself with being busy has been intensely painful but also a blessing bearing gifts. One of those gifts is a feeling of courage in pockets inside myself where previously only fear existed.

In terms of treatments, I'm starting to feel the Valcyte yuck again. I'm not noticing anything from the VIP treatment yet but my doctor said it takes two weeks to see if it will help. I've had to slow down on nebulizing the glutathione because I think I was starting to detox a little too fast. Yesterday and today I've felt like I have a virus.

I don't know what's ahead but this past week has felt like I've experienced a little slice of heaven everyday.

In peace and wellness-

Georgetown ME/CFS Study

2009-07-31T21:10:00.000-07:00

I've had a wonderful week. Will post updates this weekend but wanted to post this information I found while perusing the web. The CFIDS Association of America is on Facebook and this info was posted there. Here's the link to the Facebook page:

http://www.facebook.com/pages/The-CFIDS-Association-of-America/47921632107?v=feed&story_fbid=109317212107&ref=mf

I just tried the links and had problems getting to the site so here is a cut and paste link (the link to the study is provided on the site):

http://www.facebook.com/pages/The-CFIDS-Association-of-America/47921632107?v=feed&story_fbid=109317212107&ref=mf

This is a direct quote from someone who is participating in the study. This seems like an important study that is very much in need of healthy people to provide spinal fluid that can be compared to the spinal fluid of ME/CFS patients.

The Georgetown University located in washington Dc is conducting a very important study reguarding CFS. They have identified a specific set of proteins found in the cerebral spinal fluid in patients with CFS. These proteins are not found in healthy people and maybe the actual pathology of this disease itself.Upon enrollment I was informed that they are in desperate need of healthy control subjects that are WILLING TO HAVE A LUMBAR PUNCTARE PERFORMED. My girlfriend has agreed to participate with me. I am urging each and every one of you to try to recruit a healthy volunteer as these findings may very well lead to a cure of this horrific illness. Study participants will be required to stay in the hospital for a total of three days where they will undergo testing and will be paid in the amount of $400.00 for their time. I will post a link below for those of you who maybe interested. Remember, it is up to us to make a difference! Lets solve CFS!!!

Here's a link to the study itself:

http://clinicaltrials.gov/ct2/show/NCT00810329

If anyone knows anyone near Georgetown who is wondering how they can help the ME/CFS cause here's their chance...

In peace and health-

Doctor Visit

2009-07-23T17:58:00.000-07:00

I met with my doctor today to discuss the next steps. I had finished my six months on Valcyte on Saturday and was expecting to feel better simply by being off Valcyte but surprisingly I felt a little worse. Because I started to experience improvement during month 5 he wants me to continue Valcyte for another three months.

I'll be starting a treatment called Aviptidal (VIP). It's a new treatment that's geared mainly toward biotoxin illness. Since I have bloodwork that indicates that's partly what is going on I'm going to give this a try. In addition to the VIP I'm going to order a drug that bodybuilders use (I forget the name). It's supposed to help increase Melanocyte Stimulating Hormone (mine as well as most ME/CFS patients are low). MSH is an anti-inflammatory, regulatory hormone made in the hypothalamus. It controls production of hormones, modulates the immune system and controls nerve function, too The drug is currently undergoing clinical trials but the bodybuilding community discovered it so its available online. I guess it also makes people tan.

He diagnosed me with Postural Orthostatic Tachycardia Syndrome and prescribed a beta blocker. Hopefully that will help. For the past week I've been having intense and frequent (as often as every 5-10 minutes at times) heart palpitations or maybe its tachycardia. He said that in my case adding more salt won't help.

We revisited lyme and I'll most likely do Bicillin injections in the future (after Valcyte).

I will also start nebulizing glutathione once I get the it from the compounding pharmacy. I had a treatment today and thought it was mildly helpful. This will help with any leftover mold stuff and also helps with detoxification.

I really like my doctor. I keep forgetting that my brain has either inflammation or damage or both. This affects the hypothalamus, pituitary gland, my nervous system, etc...

Also, the reason we have such a hard time with sleep is because the brain doesn't have enough energy. We actually need energy to rest which is something I find interesting.

I decided to radically change my diet and am considering either the macrobiotic diet or the 80-10-10 Diet (by Doug Graham) which is basically a raw foods diet. I know nothing about the raw foods diet (80-10-10) but my doctor said this diet has significantly helped people with cfs. Changing my diet will be challenging but if it will help then I'm all for it. I'm going to go slow though.

After the doctor appointment we drove around for a little bit (his office is over an hour away from my home) to check out potential towns to live in. And then we went shopping at the outlet mall on the way back. We only visited 3-4 stores briefly but it was fun.

It's been a long day. Tomorrow I'll restart Valcyte.

I'm encouraged by the new treatments on the horizen like VIP and this MSH medication. I think they are very promising treatments-not a cure but having low MSH is not good.

A Success!

2009-07-15T18:48:00.000-07:00

I went on an outing and was feeling pleased about it. I realized, as I was walking through the door, that when I have something I'm upset about or excited about or just want to share my thoughts the first people that come to mind are my partner (of course) but also my blogging buddies. I feel like we have kind of a virtual family of sorts.

I was able to do something today that would have been impossible for me six months ago. I met with some people whom I'd never met before. All of us have this disease. I'm filled with different emotions as I write. And, because I'm tired, I'm having more brain fog so I'm wanting to write everything down so I don't forget anything. As a consequence this blog post might be all over the place.

It was a wonderful experience to meet with people-in person-who also struggle with this illness. I had all these thoughts and feelings as I was sitting with them. I was aware of how much each has suffered and many times had tears in my eyes as I listened to them. I could see the pain in each of their eyes and I wondered if mine looked the same. I was struck by the similar themes that each of us talked about: the poor treatment by doctors, the thoughtless comments of well meaning people, the countless doctors before getting a diagnosis, the sense of isolation, etc...None of us were complaining by any means, we were simply talking about our lives.

I was aware of how freeing it was to be able to talk about these things and know I a) wasn't bringing the other person down b) wasn't trying to pretend I felt better than I did c) that I was being taken seriously and, most importantly, that I mattered even though I've been housebound due to this disease.

I was moved by the simple fact that I was at a table outdoors with people I liked. Such a normal thing but so barren from my life these past two years. There were times when I wanted to shout "I'm doing it! I'm outside! I'm with people! This is amazing!"

It was also great to meet these people and like each of them. I hope things work out so I can get to know each of them over time.

And then there is the fact that I'm having improvements that enabled this to happen.

As I walked back to my car I thought to myself "how wonderful to have such a normal experience." I'm not returning to my car because I just had a doctor appt or my blood drawn or had some other medical test done. I was walking back to my car after having tea with some potential friends. What a gift. And I was deeply grateful.

Trying to Put Together the Puzzle Pieces

2009-07-14T13:04:00.000-07:00

Now that I'm in the midst of my last week on Valcyte I'm trying to figure out what to do next. I will see my CFS doctor next Thursday. Hopefully he will put me on Aviptidal (VIP) which is an immune modulator. Ritchie Shoemaker, MD, an expert on biotoxin illness has been using this with pretty good success but its a very new treatment so there isn't a lot of information out there yet. Plus there are only two places in the US that have been approved to use this treatment. I think this will be the next big treatment out there for people. I'm hoping to get more details about it during my doctor visit. I'll keep you all posted.

Sunday, July 19, will be my last day on Valcyte. I'm very glad to have this behind me. In some ways I feel like I lost my mind these past six months. It has not been easy but I think it has been helpful. My baseline functioning feels like it has improved maybe 10%-15% so even though I'm in a little crash, its nowhere near what my bad days used to be like. I'm looking forward to getting back to myself. One of these days I'm going to do a post on how to survive Valcyte.

I'll continue with the Methylation Protocol. I think that is helping also. It's just a very, very slow process.

Trying to figure out what the next steps is like looking at pieces of a jigsaw puzzle. My "pieces" of the jigsaw puzzle lay about in the form of various test results, symptoms, what helps, what makes things worse, etc....

In trying to figure out treatment sometimes I think about the physicians who are experts at all of this and I try to figure out who's patient I'd be a good fit for. Lately I think I'd be a good fit for Cheney since I have heart involvement but also a good Ritchie Shoemaker patient because I also have biotoxin illlness.

Anyway, here's what I know about my particular form of this mysterious illness that was horribly misnamed chronic fatigue syndrome:

I have the dreaded multisusceptible genotype (4-3-53). It's the worst HLA genotype to have according to Richtie Shoemaker. I can't get rid of toxins (mold, lyme, any toxins at all) on my own nor can I easily get rid of infections like others can. In fact, Shoemaker believes people with this genotype don't get better. I refuse to believe that.

My MMP 9 is very high (350? is considered high and mine was 739) which means I have a lot of inflammation in my brain and likely heart and lungs as well.

I have low MSH (35 is low and mine was 12). MSH is the master hormone regulator.

My immune system is dysregulated as shown by the RNASE L test. My VEGF is low which means my cells aren't getting enough oxygen.

My adrenals are shot, my thyroid is not working properly, I most likely have POTs.

All of my test results would land me in Ritchie Shoemakers office with a likely diagnosis of mold poisoning (high MMP 9, low MSH, bad genotype, low VEGF).

I'd like to repeat some of these tests to see if they have changed as a result of using CSM (cholestryamine) to clear toxins from the mold, Valcyte treatment, and living in a new environment.

I think next steps would include VIP treatment (aviptadil), continuing focus on spirituality, dealing with parasites, stopping all sugar and dairy, getting my hormones balanced, and work on strength and flexibility.

I'm still very confused about the POTS. I really appreciate people's suggestions and comments. Technically, I should have been diagnosed by the cardiologist with POTS. After doing some reading I realized I meet the criteria. My blood pressure was borderline high although at one point it was 153/100 but only for a couple minutes. I'm curious how my CFS doctor is going to approach this. Plus it turns out that heart problems do run in the family. My Aunt on my mom's side has Atrial Fibrillation and my dad was just diagnosed with heart failure (mild).

Today I went on an 8 minute slow walk (its no surprise to me anymore when people almost twice my age zip by me) then climbed up the stairs to the apartment. I took my pulse and it was almost 130. Just from a walk! I'm drinking lots of water and V-8. I feel like I need to get some answers regarding the POTS stuff.

I'm encouraged by my improvements. I can now be 90% sure that I can leave the house for a small errand. I'm still housebound but before I was lucky if I could leave the house 1-2 times in a week for a very short period of time.

Being able to leave the house for a little while opens up the world a bit. Tomorrow I'm going to meet some other people who have this illness and live around here. I'm excited to meet others like myself but a little nervous too. The same fears pop up, even though, of all people these people will get it. I miss being part of a community.

Time

2009-07-08T12:40:00.000-07:00

Where do I begin? I haven't blogged because I've been trying to absorb the latest news. One of our kitties has been diagnosed with terminal mammary duct cancer. The tumor is very large which means the cancer has spread. I asked the vet how long she has and the vet said "it depends. maybe months but she doesn't have a year." Its heartbreaking. This kitty (Tiger Lily) is so full of love. Her favorite things are laps (which equals love to her), food, and milk. She has a pure, innocent heart.

So there's me with my illness, Katie with chronic renal failure (I've been blessed that she is relatively stable-knock on wood), and now Tiger Lily.

These little beings have been my constant companions for the past two years since becoming ill. I've spent more time with them than anyone else so they are a big part of my world.

My anxiety has really increased, my nerves are shot, and I'm so terribly sad.

So I find myself once again in this weird relationship with time where, on the one hand I want time to pass quickly in terms of finishing Valcyte, getting on with other treatments, etc...but on the other hand I want time to standstill so that Tiger Lily will always be here.

Its been hard to focus on anything else or even write.

I just have to say how much I hate cancer-it took my mom at a young age, it took my cousin at a young age, my dad has prostate cancer and chronic lymphatic leukemia, it took my kitty Amelia, and now this little kitty has to suffer with it.

I had the Tilt Table Test on Thursday and passed. I was surprised as I was certain I would fail it. The cardiologist spoke to me afterwards and said it still doesn't rule out Postural Orthostatic Tachycardia Syndrome and said there was a significant change in my heart rate upon standing. I watched my blood pressure and heart rate each time the blood pressure cuff took its measurements. Laying down it averaged 88 beats per minute. Standing it went as high as 128 at one point but seemed to average around 105 beats per minute. My blood pressure was borderline high averaging about 141/92. It would drop, go up , go down and seemed like it was all over the place although the lowest it ever dropped was around 112/76. The doctor said I needed to increase my fluid and salt intake. Thanks to Sue Jackson's advice I've already been doing that although I need to drink V-8 every day. He also said to not stand in one place for very long and be careful when I get up.

I'm not sure what to think. I was hoping that I'd be able to take something that would increase my functioning. I said to the cardiologist I really want to be able to drive on the freeway again or drive without worrying about fainting. He said the next step would be to consult with a neurologist.

I did fine on Thursday and then crashed. I have all the symptoms of POTS. I'll talk to my CFS doctor about what's next in terms of the heart rate stuff.

So its been a rough go of it these past few days. I'll post a more thorough update on things once I feel a little better emotionally.

Hmmm...

2009-07-01T16:19:00.000-07:00

After really thinking about it I've decided not to go private. I'll deal with the other stuff in some other way or at some future time maybe I will go private. It doesn't quite seem fair to finally be experiencing some improvements and then limit who can see it. I'm also aware that it's a pain to have to sign in to see a blog especially when one is having a bad me/cfs day.

I'm continuing to experience improvements. For the past two years any improvement I've had was short lived and limited to a day or so. This run has lasted twelve days now. I'm a bit more tired today than I have been but I've also been under a lot of stress which is never good for us.

So, I decided to seek out therapy. I figure it can help me continue to make the necessary life style changes as well as help me develop tools to be true to myself. I also want to come home to myself.

I spent all day last Thursday researching therapists who were listed on my insurance plan. I finally settled on one who sounded great, had a great web page, and good training. I had first session on Monday. Over the phone she told me she had worked with cfs patients in the past. You certainly couldn't tell during our session. She actually psychologized this illness! She actually said I developed my symptoms due to psychological reasons!!!! I could not believe it. She was surprised I wasn't working. As if I could. In hindsight I realize she has no knowledge of this illness and thinks its just fatigue. I tried my best to educate her but I was just a patient and she clearly was having none of it. I will not do therapy with her. At some point I want to put together a packet of information to give to doctor's, therapist, or anyone else so they can become educated on this. I can easily go off on a rant here. The other part that is a bummer is I only have 20 sessions per year and I used one up on her. It was a good lesson though. Next time I will ask the potential therapist how they view cfs.

Tomorrow I have my Tilt Table Test. I'm a little nervous,mostly because I don't want to crash afterwards. I've really been enjoying these improvements.

My last day of Valcyte will be July 19th. I can't believe I have only 19 days left. My doctor will put me on a new immune modulator once I finish Valcyte. Hopefully its out by now.

I haven't been able to watch the rest of the Gupta Retraining DVD's because the computer that has the DVD player is not working at all. I'm disappointed about it because the stuff I've learned so far has been helpful. It's a nice adjunct to Valcyte and the Methylation Protocol.

Has anyone else had the Tilt Table Test? If so is there anything you recommend for recovering afterwards?

Peace and Wellness to All

A New Phase and A Blog Change

2009-06-25T13:00:00.000-07:00

I'm feeling a bit stronger than I have for a couple years which is great news. I have a long, long ways to go but I'm feeling a little encouraged. I feel very protective of this emerging strength.

I'm finding that I'm also rather terrified of what's ahead of me because I know what its going to look like. It's interesting to be feeling a little better because I'm realizing how alone I am and how absolutely not at home with myself I am. I also realize the absolute need to makes changes in my life that will support my emerging strength, enhance my sense of spirituality, and feel a sense of peace. Because of how sick I've been and prior to that all my efforts went towards completing my PhD on top of working full-time etc...I neglected friendships and let my support system go. I don't know how to go about making new friends when I have such limitations regarding energy etc...but find that I desperately need to establish a support system.

I'm also re-evaluating every aspect of my life. I realize that I have little tolerance for certain behaviors and little physical tolerance for a certain level of stress. I have no patience for people who have zero insight, refuse to accept responsibility for their behavior, are blaming, and have no desire to understand or take into account the fact that I'm this ill.

I feel like I have changed as a result of this illness and certain things that used to be okay with me no longer are. I can't pretend that certain things don't bother me, I no longer want to sacrifice my own values just to maintain certain relationships. I have reconnected with my desire to live, reconnect with a sense of soul and being in the world that I used to have but got drained out of me because of a certain level of stress that comes with hearing over and over again that my perceptions and/or aren't valid, aren't accurate or get corrected and minimized.

Anyway, due to the next phase of my reflections and journey as well as other reasons, I'm going to limit who has access to this blog. I want to make sure I stay in contact with the people who read my blog regularly so I'm assuming that if your on my list of followers you'll still have access to my blog?

I wanted to provide some warning about the blog change and my reasons for doing so. So if you are wanting to have access to my blog I guess it might be a good idea to add your name to the followers list (unless anyone knows differently and can tell me this works).

I just tried making this blog private but can't figure out how to do it. Does anybody know?

Peace and Health to All

Living The Surreal Life

2009-06-23T14:02:00.001-07:00

I'm a bit at a loss for words as I once again digest the consequences of having an illness like this. I feel a certain responsibility to be very honest in this blog as well as trying to educate people on what its like to have an illness like this.

I don't think its possible to really grasp how ill some of us are because when we are out in public or having social visits, we are putting on our best face. So what people see is that I'm smiling, interacting, laughing, and I don't look sick. What isn't seen is how much I'm struggling with trying to find words to express myself or how long it takes to process things that are happening or how long it took to get ready that morning, or how tired and woozy I might be feeling and sometimes, how I'm simply trying to prevent myself from passing out. What people never see is what occurs when they leave.I'm flat on my back feeling profoundly fatigued, struggling cognitively, and frightened I won't come back out of it.

I have a lot of pride. I used to have a lot of pride about my independence, my intelligence, etc...I'm recognizing how much shame I have about being this sick. It is having a profound effect on the way I interact with everyone and I don't know what to do about it. I try to hide every bit of evidence of illness from people. This in and of itself takes energy.

I don't mean to sound whiny when I talk about these things. I'm simply stating the facts of my experience.

I think I expect people who knew me when I was well to reject me because I'm sick. I didn't have the highest level of confidence when I got sick and finding myself completely disabled has altered my sense of myself in the world. It has gone from a place that I enjoy and freely explored to a place that has to be navigated. Driving used to be no problem. Now I don't drive on the freeway and I try to find routes that don't have long stoplights. I can't stand in long lines because I get woozy. I have to limit the number of times I bend down to pick something up because it increase the dysautonomia symptoms.

Today I'm digesting some upsetting things that occurred over the weekend. As I'm doing that I'm also having to continue to work on gathering data for my ssdi appeal. As I process my changed sense of self and try to regain a sense of balance and centeredness I have to tie up the loose ends of my old life as if I'm making the final arrangements after someone has died. That's the way it feels. And the grief too is very private and though less intense now than a few months ago, still has its fingers on my soul.

That said, I have noticed some improvements in the past 4 days. Finally, something to show for the 5 months I've been on Valcyte. I'm encouraged by the improvements. But overdid it and am now paying for it with a crash. I was able to go out and do a couple things each day for 4 days. For the first time in almost two years I went to a musical event celebrating the summer solstice. I wasn't there for very long but I did it. And I was by myself. It took place very close to where I live which helped but I got to hear some music and actually be out of the apt for about 30 minutes.

Yesterday I went to my cardiologists appt at a hospital about 20 minutes away. The appointment was over an hour, it was a warm day, and I was emotionally upset. Since it was at the hospital I had to find parking which ended up being a very long block away. I made it through the appointment without passing out. The cardiologist had to keep redirecting me because I couldn't quite answer his questions directly (which was embarrassing). He was kind about it though. I think he could tell that something wasn't quite right. All of these things would have made it very difficult to drive myself home but I was able to drive home quite easily and, stop at a store to try to find applesauce.

The cardiologist agrees that it is likely I have the form of dysautonomia-postural orthostatic tachycardia syndrome so he ordered the Tilt Table Test for July 2nd. My sister will take me to the appointment thank goodness. The doctor said I needed to have someone drive me home after the test. He explained the test to me. I didn't realize how long it is. For anyone who is interested this is what happens: they lie you flat for 40 minutes to get a baseline read for heart rate, blood pressure, etc...Then they tilt the bed up as if you are standing but you are strapped in so you can't move. You stay "tilted" until you faint or there is a significant change in heart rate, blood pressure, etc...If this doesn't occur within 40 minutes they return you to the flat position and an intravenous infusion of isoproternol (Trade name = Isuprel) is started. This medicine increases the HR and BP. This effect is similar to that produced by our own natural adrenaline release. As you may have gathered, the test is now simulating what happens when the sympathetic nervous system is stimulated and the "accelerator" is pressed. The tilt table is then raised back up to 80 degrees and the IV medication continued.

A stop clock in the room is used to keep track of time. If an abnormal result is not seen, the table is lowered and then raised back up after increasing the dose of the IV medicine. In patients with dysautonomia, the increase in HR and BP is usually sufficient to cause "panic in the back seat driver" (parasympathetic nervous system). When this happens, the HR, BP or both drop suddenly and dramatically as the parasympathetic system "slams the brake pedal.". The patient gets dizzy and passes out. Thus, TTT succeeds in simulating a real life situation and establishes the cause of recurrent black out spells. With the above changes, the test is considered positive. The IV medicine is immediately stopped and the patient returned to the flat or supine position. Within a few seconds, the patient regains consciousness and both the HR and BP return to normal. The patient is observed for 10 to 20 minutes and then disconnected from the equipment.

I've been dreading this test for the past year. It feels awful to faint and I've been afraid that the episode will further increase my fear of fainting out in public because it might really happen now that I know I have dysautonomia (if I end up fainting during the test). Luckily I have the Amygdala Retraining Program to help with those fears and, there is treatment for dysautomonia. There is no cure for it but there are medications that can help manage it.

I've written enough for now. I've got to find a way to better explain what living with this is like.

Too Many Meds

2009-06-12T17:09:00.000-07:00

I'm laying here listening to my cousin's music. I think his music is really good and I don't say that because he's my cousin but because its just really good. He's going to be playing in San Jose next Thursday. I wish I could go but this stupid illness...

The past couple days I've been feeling well, "not right" is all I can think of to describe it-like something isn't right neurologically maybe. I've also been getting anxiety spikes and the depression came roaring back. I think maybe the depression is a combination of many things-a byproduct of the toxins, having a chronic illness, all the uncertainty the illness brings, Valcyte, and a sense of profound grief at having lost what was my life.

I realized after I posted Tuesday that I am on too many medications. I checked all of them in an online drug interaction checker and found that they all can interact negatively with each other. Surprisingly there were no drug interactions with Valcyte. I decided to stop the Amantadine and the Lamictal last night. Both can contribute to insomnia. Amantadine and Doxepine can cause anti cholinergic syndrome. Because none of the medications seem to be helping I'm going to slowly eliminate the rest of them. I want to get rid of the Doxepin as that can interact with just too many things. I'll find something else to use for sleep. I'll be done with Valcyte in 28 days thank goodness. It feels good to take some action regarding the medications. It can't be good for my body to be on that many meds.

I woke up today feeling extra exhausted and weak but I don't feel as bad as I have the past couple days. Weds I got up from the couch and within three steps thought I was going to pass out. Luckily I made it back to the couch but it frightened me. The way I've felt the past couple days has also frightened me. I've been having bouts of pretty bad stomach pain so I guess I'm developing an ulcer. Also, the headache I thought was gone came back. I've got to find a local doctor.

I finally got referred to the cardiologist. That office (the cardiologist) worked very hard getting the nurse to follow through with multiple phone calls and apparently some heavy confrontation. I think they raised some heck at my doctor's office. Anyway, the cardiologists are booked out until August but they consider my situation to be urgent to I have an appointment on June 22 with an actual cardiologist for one hour. I'm grateful to have the appointment. My last echocardiogram and 24 hour holtor monitor was done by a technician and computer. I never met with a cardiologist to go over my symptoms. This time I get to meet a cardiologist.

I found a conference I want to attend in San Francisco. It's in one year and I plan on being well enough to attend. Its going to be about Carl Jung's never before published Redbook which contains his later theories. I can't wait. I was doing a little reading on dreams today and was able to feel that same sense of passion and fascination I have for this subject especially the way Jung approaches dreams.

I desperately need some good sleep-something I haven't had in a couple of weeks now. My downstairs neighbor for some reason stomps through the apartment and it feels like somene is pounding on the walls. It is quite jarring to my nervous system. Even though I wear earplugs I've been woken up for the past three days with her stomping. I don't understand how someone can walk so loudly. I got so frustrated yesterday that I got up and did some stomping myself. I found myself following the sound of her stomping through the apt matching her stomps with mine. Mature, huh? It was satisfying and, I found the secret to her stomping. You walk really forcefully leading with your heel. I can't ask her to walk differently but I can stomp with her. They are conscientious about sound which I'm grateful for but the stomping is really difficult for me to deal with sometimes.

Improvements

2009-06-09T17:38:00.000-07:00

I'm now four months and almost three weeks into Valcyte, nine months into the Simplified Methylation Protocol, one week on lamictal, and one day doing the Amygdala Retraining.

I've been noticing some improvements, small, but noticeable. I'm able to sit up more hours during the day. I find I'm not automatically lying down which is what I used to do. My crashes are lasting as long. The swollen lymph node on the back of my neck has decreased considerably. My stamina is a tiny bit better. The muscle pain is, for the most part, gone as is the tendon pain I was having. I haven't had a really bad headache in a few weeks.

My remaining symptoms seem to be consistent with dysautonomia as well as problems with the HPA axis. These two problems are biggies though and quite disabling so I'm anxious to find treatment for them. I'm already on 5mg of hydrocortisone to address the hypoadrenia but its not doing the trick. I still have a dark line along the front of my neck. I still have tachycardia, dizzy spells, and fatigue.

Today I woke up feeling bad physically and emotionally. I was dreading the day. I did the first session of the Amygdala Retraining. It helped in a couple ways. First doing the exercise shifted my thinking from negative thoughts to more positive ones and it must have calmed my nervous system down a little bit. I was overdo for my blood draw by about a week. This morning I thought "there's no way I'll be able to get out to the lab" but after listening to the DVD and doing the exercise I noticed I had 30 minutes to get to the lab before it closed. I got my stuff together, put my shoes on and left. It was fairly easy. I actually left the house rather spontaneously rather than trying to figure out if I was well enough to go out. I thought back to four months ago when I went for my first blood draw-I was woozy at every stoplight, and woozy in the waiting area. What a difference between what happened today and how I was four months ago.

I have a long way to go. I feel like I'm in a complete restructuring process from my body to my entire mind and way of looking at things.

Its still not easy and the depression lingers but I feel very grateful for what I have in my life. I'm reconnecting with extended family that I'd lost touch with and that feels wonderful.

It takes discipline, patience, courage, and faith to have improvements.

I've been listening to Jack Kornfield "A Path With Heart" about meditation and find it helpful. I think until my mind is in a better place I need to keep it distracted and feed it good, positive things. I just remembered something from my post-doc fellowship. With depression they've found that a part of the brain actually shrinks in size. Also, research has shown that the amygdala is very involved in anxiety.

I'm on a slew of medications which is concering but hopefully I'll be able to reduce them at some point. This is my current treatment:

Valcyte 450mg twice daily to treat HHV 6 and EBV
Amantadine 100mg-to increase dopamine levels
Hydrocortisone 5mg-10mg for hypoadrenia
Armour Thyroid 30(?)mg
Gabapentin 300mg at night for sleep
Klonopin 1mg at night for sleep
Doxepine (liquid) 20 drops for sleep
Melatonin for sleep
Methylation Supplements: 1/4 Folapro, 1/4 Intrinsi B12, Perque B12, Neurological Vitamin, Phosphatidylserine Complex
High Quality Protein Powder
2000mg Buffered Vitamin C
Magnesium Malate
CoQ10 200mg
Liquid B Vitamins

Can I Get a Referral to a Cardiologist Please?!!

2009-06-08T19:06:00.000-07:00

It's the latest saga of my cfs journey. Ten days ago I spoke with my doctor who agreed I needed to see a cardiologist to get, among other tests, a tilt table test so we can determine if there are any changes to my heart and whether I have dysautonomia or POTS (a great website for POTS is http://www.dinet.org).

Because this doctor isn't located in the Bay Area he asked me to look up cardiologists who do this sort of testing and email his nurse. Simple. At least one would think it would be simple. I found a cardiologist, asked what they need in terms of the referral and then sent an email to the nurse with detailed instructions on what they needed.

A week later I called the cardiologist's office only to discover the referral was never faxed to them. I emailed the nurse again with the instructions to make it easy as I know the nurse is very busy. I got an email back saying the referral was faxed that day.

The next morning I spoke with someone at the cardiologists office because the referral packet was incomplete. She was very nice, very helpful and upon hearing my symptoms agreed I needed to be seen and once they get the information from my doctor's office would schedule an appointment asap. She said the doctor's are extremely busy and booked out until August but they would get me in sooner but they needed the information from my doctor's office. We both agreed to contact the nurse. Late that afternoon I received an email from the nurse saying the referral was refaxed with the correct information.

Today I got a call from the cardiologist's office just to see how I was doing! I thought that was so nice. They were checking up on me to see if I was okay. It turns out my doctor's office still hadn't faxed the correct information!!! I tried calling but they don't answer phones on Monday's after 12 so I had to send another email.

I've been patient with having to remind said nurse about calling the pharmacy to fill prescriptions, etc...And I've been very patient. But when it comes to my heart its not okay for this sort of nonsense to go on. I have chest pain,tachycardia, light headedness, palpitations, and my left foot turns a dusky color when I sit.

I've read that people with these heart issues find they resolve once they've been on Valcyte for about 4 months but mine aren't so I want to find out why.

One thing is clear though. I need to find a local doctor. I wish Dr. Kliman were still alive. He would have been right on top of this.

Yesterday I was able to get out of the house for a few hours. We did some errands including a local Crate and Barrel Outlet. I took advantage of the couches that were for sale. I kept laying down to recharge. Luckily the sales associates thought I was just trying out the couches....But I'm paying for my day yesterday with a bad crash today.

Synchronicities

2009-06-04T16:35:00.000-07:00

Carl Jung wrote a lot about synchronicity which in its most simple definition can be translated as "meaningful coincidences." I'd like to write about it but have neither the brain nor the energy but it is a fascinating concept to me, one which points to events that occur outside the space-time continuum that we live in and a phenomenon that suggests there is something greater than ourselves that exists. I believe that synchronistic phenomenon occur most frequently around death but also occur during regular everyday living.

It's been kind of a rough week starting when I spoke to my SSDI attorney. We were going over various reports doctor's had written when he came upon the SSDI neuropsychologist examiner report which showed I had at least moderate impairment. I was shocked to learn my IQ had dropped 30 points in one area and at least 20 in another. And I was really trying on those tests.

The most upsetting news was learning of my cousin's death. He died last Friday of esophageal cancer that had been diagnosed just one year prior (maybe not even one year). He hadn't reached his 55 birthday.

Growing up I never felt like I'd fit in anywhere. Moving around a lot prior to 4th grade only compounded my sense of not belonging anywhere. The only place I felt like I truly belonged was when I was with my extended family on my mom's side. I felt accepted, loved, and seen for who I was. I happen to think my Aunt's, Uncle's, and cousins are some of the finest people you could ever meet-highly intelligent, grounded, liberal Irish Catholic, great sense of humor, socially aware, kind. They lived in another state so we visited them once or twice yearly but they were never far from my mind. When my mom died this particular cousin (Dennie) really helped me out. He had lost his father just 8 months prior.

I feel such sadness not only for the loss of a person like Dennie but for his family. He leaves behind two daughters and a wife who loved him immensely. His mother (my Aunt and my mom's older sister) has had to bury her husband, her younger sister, and now her son. I cry when I think of the pain she and the rest of her family are feeling. He also had two brothers and two sisters.

His funeral is tomorrow. It's in another state and I'm too sick to attend-something which breaks my heart and is very upsetting for I'd like nothing more than to be another person to show up and be a support for the family. I remember how much it meant to me when my mom died. Every day this week I've been on the computer looking up Amtrack schedules trying to figure out how I could attend his funeral. Amtrack has sleeper rooms but they are quite expensive.

Here I was, someone who can't even go out to dinner, thinking maybe there was a way to will my body to get strong enough to attend my cousin's funeral.

It has been difficult to accept that I can't go and it's made me feel helpless in a way I don't like.

Abruptly changing subjects now (I can't think of a transition sentence): I started Lamictal today. There was a delay because the pharmacy had to do a special order because I can't swallow pills. I did some googling and found that Lamictal can have a positive impact on cfs symptoms in addition to helping with depression. I'm grateful that my doctor thought of this so I won't have to try an SSRI.

I was pleased to have received the Amygdala Retraining Materials in the mail. I wasn't expecting them until next week so this was a nice surprise. I've watched the introductory sessions. I'm liking what I'm hearing so far. The DVD's are very professional and well done. Ashok Gupta has a pleasant voice and so far it's brain fog friendly. I'll be starting the actual retraining part tomorrow or Saturday.

After going to the pharmacy to pick up the Lamictal I decided to stop in at the health food store that was near the pharmacy purely out of convenience. I've never been to this health food store but needed to get more d-ribose and protein powder. As I was paying for both the man behind the counter asked me why I was taking d-ribose. I mentioned something about my heart. He asked a couple questions then asked me to sit down. It turns out he is a chinese acupuncturist and herbalist. He is from China. He listened to my pulses, looked at my tongue, and was quiet for some time (which raised my anxiety). Then he said what does your doctor tell you about your heart? I told him I'm waiting to get in to see a cardiologist. He seemed very concerned. Then asked if I was having trouble sleeping (yes), were my feet cold a lot (yes). He mentioned something about excess heat in the heart and told me I needed to strengthen my mind to tell this illness to go away. He's going to put together some Chinese Herbs to help. As I left he said "something tells me you need my help a lot. I will help you." As I left I couldn't help but feel the universe was taking care of me. And I'm grateful.

More Next Steps

2009-05-29T15:05:00.000-07:00

My brain fog is back bigger and better than ever! The one positive thing I can say about the brain fog is my delight in finding things I forgot I had. I've made quite a few discoveries these past few days.

I spoke with my cfs doctor yesterday. Luckily it was right after I received an email with the announcement by Dr. Meirleir that he had discovered the cause of cfs so I had a chance to run it by my doctor. He was skeptical but asked me to send him the link. My doctor's office is in regular communication with Dr. Cheney and other top cfs docs. They hosted the Sonoma Working Group which consisted of all the top cfs docs around the world (as well as LLMD's) to put their heads together to try and figure this stuff out. I'm reserving judgement about the announcement until I have more information.

I'm to continue Valcyte for six more weeks. But if my mood worsens to stop it. We are going to try Lamictal to address the depression. Lamictal is an anticonvulsant that has been found to be effective against atypical depression as well as treatment resistant depression. It may also have minor impact on HHV 6.

Once Valcyte is done I'll start treatment for parasites. I've had intermittant upper right quadrant pain since my illness began.

There is an immune modulator coming out in the next couple months (no-its not Ampligen) that my doctor wants to try on me to see if we can ramp down the overactive immune system.

I also got a referral to a cardiologist for a tilt table test to be evaluated for POTS (postural orthostatic tachycardia syndrom). Link to POTS place here: Sue Jackson had mentioned this might be a possibility with me so I brought it up with my doctor and he agress. It's a bit strange to see a cardiologist for POTS because its actually a neurological condition but affects the heart.

The antibiotics, Mepron, and Valcyte have been rough on my body and it will be good to have these treatments behind me. I think I'm going to be focusing on alternative treatments next.

I have run across an interesting phenomenon in the cfs world. This world is centered around contact via the internet so maybe that accounts for some of this.

Chronic Fatigue sufferers often talk about judgements and criticisms from doctor's and friends or family members who don't believe them etc. I've encountered doctor's who don't believe in this illness as well as insensitive comments from a few people I know. But I have to say the most destructive criticisms and judgments have been from fellow cfs sufferers.

I've seen people on various message boards jumped on for exploring lyme or seeing alternative practioners or seeing western medical doctors. Everyone has their opinion. We criticize people who are healty for doing the very thing that we do to each other. Which is to criticize the way others are dealing with their illness. I think feedback is important and I don't shy away from that but I do take issue with harsh judgements and criticisms.

I have been criticized for exploring various treatments to improve my quality of life and I'm tired of it. I am on Valcyte because every doctor I have seen has recommended it based on test results. I have high titers to EBV and HHV 6-both are very destructive viruses. I have been seen by a rheumatologist, an immunologist, a doctor who specializes in treating this illness. All of whom looked at my symptoms and my test results and came up with the same conclusion-I have active HHV 6 and EBV. These viruses cause cancer, multiple sclerosis, viral myocarditis, and many other things. So I'm taking Valcyte to deal with the viruses. Do I like being on Valcyte? Absolutely not! Do I think its going to work? Who knows?

But you know what? As bad as the depression has been, at least in the back of my mind taking Valcyte has given me six months of hope. Sometimes it has been that tiny ray of hope that the Valcyte might help that has kept me alive. If that's the most I get from taking Valcyte for six months so be it. At least I'm alive. There are probably a couple people that are grateful for that.

So please, if a treatment that someone is pursuing is giving them a sense of hope, let it be. It might be the only thing keeping them going.

Update and Next Steps....

2009-05-26T12:25:00.000-07:00

I'm taking advantage of my fairly good mood so I can blog. The past couple weeks have been filled with a dark relentless depression. I wake up feeling okay but within two hours of taking Valcyte my mood plunges into the toilet. The depression in addition to the cfs has been crippling. Sending emails, making phone calls have felt impossible. When I'm like that I'm in the grips of Eeyore who's theme is "what's the point" "why bother."

Yesterday I paid close attention to my thoughts as my mood plunged and they were all focused on this illness. This is what the "blue meanies" tell me when I'm depressed: "you'll never have any improvement" "life is meaningless because I'm ill" "you'll never get better, have any peace, find acceptance, etc..." "you'll probably only get worse and end up bedbound" "you got sick because ultimately you're a bad worthless person who has no use in the world" "you have nothing to contribute anymore to why go on living" or "you're just a burden to everyone now." And the days are spent just trying to survive my mind. I haven't been able to blog because I didn't want to involve others in my pity party.

I realize some of this is part of the illness, some is Valcyte, and some is trying raise myself out of the ashes of my old life. I was reading something written by Emmit Miller, MD. He wrote a new book whose name escapes me now. But in the book he talked about the inner voice of healing. This inner voice can get trampled in the throes of trauma, depression, etc...I'm trying to reconnect to that inner voice.

I've been reading a little here and there from the book "Finding the Way Home: A Compassionate Approach to Illness" by Gayle Heiss. I'm finding it very helpful.

As far as updates I've been on Valcyte for 4 months and one week. I will be glad to finish this experience. In many ways it has been bad for my soul and spirit. I don't know what good its doing for me physically. The past couple mornings upon awakening I've told myself I'm taking a break from Valcyte but I get up and take it anyway just in case its doing some good.

Awhile ago I wrote a post and then deleted it (and then did the same thing again on Friday-another symptom of the depression) but Jo made a great comment about the differences between the UK and US regarding treatment for this illness. I saved it but have so many emails in my inbox because of all the groups I'm on that its a bit overwhelming to find it. I was struck by her comment and it has stayed with me but it highlighted for me how drug focused we are in this country about finding a medication to fix the unfixable. Forgetting for a moment the horrendous attitudes that take place in this country and the UK towards me/cfs one thing the UK has done correctly is helping people focus on pacing. Truly pacing is the only proven method for dealing with this illness. Cort Johnson mentions this in his reporting of the IACFS/ME Conference in Reno: http://aboutmecfs.org/Conf/IACFS09Behavioral.aspx

One of the poster presentations was by a man named Ashok Gupta who recovered from this illness. His was viral in nature. He developed a program called the Amygdala Retraining Program and runs a clinic in London. His theory is that the amygdala, a structure in the brain, is overactive and responsible for maintaining the symptoms of me/cfs. He has developed some powerful techniques to "retrain" the amygdala. I've decided to try his program. I really need some help in calming my overactive nervous system down and I think this can help. He says it can help 85% percent of patients. I've ordered the program and am looking forward to receiving it in a couple weeks. I will report on my progress with the program. He asks that one commit 100% to the program for 6 months. So that's what I plan on doing next.

For the past year I've been treating pathogens but haven't had a lot of improvement. Along with the Amygdala Retraining Program I will also consult with an ND to get my hormone levels back to normal. This is something my current cfs doctor seems to be weak on.

I've had enough of treating pathogens. The "you have to feel worse in order to get better" philosophy is getting old to me. I don't want to spend the rest of my life in a herxeimer reaction so I'm taking a break from chasing pathogens. No one knows what causes this disease much less how to cure it.

I want to stop the Valcyte. I think my body is telling me to. But, unless there is some indication not to, I will continue it for the next 54 days. If someone were to ask me if I thought they should try Valcyte I would say no (unless they were young). The data just isn't there to support trying this drug which causes horrible side effects. I did a rough poll of various message boards where people had tried Valcyte. I would roughly estimate that less than 30% have improvement. There are many other ways to treat HHV 6. Really though I think the body's nervous system must be calmed down and then work on building the immune system.

I feel a little hope today. Not because I'm going to be cured. I've given up on that (which isn't a bad thing). I feel hope because maybe I once again believe I can still create a life that is rich and meaningful.

International ME/CFS Awareness Day Today

2009-05-12T13:08:00.000-07:00

On July 26, 2006 I was standing at a podium in front of a group of people defending my dissertation. On my committee sat three world renowned scholars in my field. Two of them have published books and have spoken all over the world.

After I was done with my defense there was a flurry of excitement as my committee made comments. Clearly they were impressed. Here are some of the comments: "You have an obligation to write and publish about your topic." "Would you consider teaching here?" "I think we need to consider having your topic as part of the core curriculum." "This dissertation should be published." "I would like you to be part of a book I'm writing." And so on...

It was a day of great joy, a wonderful feeling of accomplishment. I heard things that people who defend their dissertation dream of hearing. After all everyone wants to hear that their dissertation is considered worthy of publishing.

My life got really busy causing me to postpone efforts at getting published. I did a post-doctoral residency program 60 miles away at a large HMO outpatient clinic working 40+ hours, commuting, and managing a growing private practice.

In May of 2007 I was feeling bad physically. I ended up leaving the post-doc 8 weeks early because of this seemingly mysterious illness. I was losing weight. At almost 5'9 my weight dropped below 129. I was too thin, I looked grey and had dark circles under my eyes. I went through a series of medical tests to rule out cancer that runs so prominently in my family. But everything came back normal.

In Sept of 2007 I was leaning against the wall of Dr. Kliman's office. I was so weak that talking was an effort. I said to Dr. Kliman I'm scared something is really wrong and I don't want to end up in the hospital. His response was "we might have to hospitalize you to find out what is wrong." It was my first appointment with him.

On Nov 2, 2007 I was told what this illness was. I'd been referred to a rheumatologist to rule out lupus. I'd prepared a 5 page list which described my symptoms, the onset, family medical history. He read it then came into the office and somberly told me I had a "viral like illness" "a chronic fatigue like illness though the label chronic fatigue is demeaning" "You have a very serious and debilitating illness that is like AIDS but not-that is like Hep C but not."

Like many people I had a complete misunderstanding of this illness so I felt a sense of relief that I *only* had a virus and that it was chronic fatigue syndrome. Thank goodness it was *only* chronic fatigue syndrome. I'd thought I was dying my symptoms were so severe so it was a relief to find out it was *only* CFS. Little did I know that it wasn't I who was dying-only my life as well as my hopes and dreams.

So all I needed was rest right?

The doctor could tell I wasn't getting it. When his enthusiasm didn't match mine, I was confused. I remember thinking it's almost like he's telling me I had cancer. All I have is a virus. A cold is a virus and those last just a few days! What is going on? I said what do I do? He said there is no cure but I suggest you look into the clinical trials occurring at Stanford. I was puzzled. What is going on here I thought to myself. Something must have clicked inside on a deeper level because I asked the doctor: "What will my quality of life be like?" I have no idea why I asked this question but his response sobered me. "I don't know" he replied quietly. It was the quiet somber way he replied that got my attention. I still didn't know what I was in for.

By the end of December I was housebound and unable to drive more than a few miles.

This illness is not about fatigue although that is part of it. This is a case where that little story we would say "sticks and stones may break our bones but names can never hurt me" isn't true. This is where names can hurt. The name chronic fatigue syndrome is misleading because it doesn't even begin to capture the essense of this illness.

ME/CFS is a chronic debilitating multi-systemic illness. It affects the neurological, cardiovascular, immune, endocrine systems. Some people have problems standing upright, other's are completely bedridden.

I've gone from someone who was able to write a dissertation to someone who struggled to puts together to create this blog entry. I can't access words, I couldn't figure out how to get the ME/CFS badge on my blog post, I can't get at the essence of what I want to say. My writing skills are drastically different than what is written in my dissertation.

I have lost my career. I no longer have an income as I have exhausted my state disability benefits. I have been denied twice by the Social Security Administration. I've gone through all of my life savings paying out of pocket medical expenses in order to have a doctor who knows about this illness.

And then there is the emotional component. The grief of losing a life has been intense. The depression almost intolerable at times.

I feel invisible with this illness.

In 1993, Tom Hennessy, a man with ME/CFS created ME/CFS Awareness Day. He chose May 12 in honor of Florence Nightingale who was born on this day. She developed ME/CFS in her thirties and was housebound and bedbound until she died.

There is much work to be done-research is lacking and hugely underfunded. The public is misinformed. Many physicians still believe it's psychosomatic (the jerks).

In the next few weeks I'll be including links on what people can do.

I'm nursing a migraine again (another symptom of this illness) which has made it difficult to blog but I wanted to do at least something in honor of today.

Link to post here

Accepting What Is

2009-05-10T17:46:00.000-07:00

As many of you know I'm trying to figure out how to get to a place of acceptance. It graced my day on Friday. I felt more at peace about it while also feeling less fear. I've been plagued by an increase in heart symptoms which always makes me wonder whether or not I'm going to die of a heart attack. Instead of anxiety I feel more of a sense of curiosity. I'm having more consistent chest pain but nothing resembling that of an impending heart attack. It feels like the muscle in my heart hurts. That along with the increase in heart palpitations and what feels like a racing heart along with my left foot turning a dusky color when I sit have prompted me to find a new doctor who can refer me to a cardiologist. A year ago I would have felt really frightened but now I feel calm.

I went to the library yesterday which probably wasn't a good idea given how tired I felt but I'm glad I did because I was able to check out "Alchemy of Illness" by Kat Duff along with another book called "Finding the Way Home: A compassionate approach to illness" by Gayle Heiss. Both look very good.

I found this passage in "Finding the Way Home" (p. 142-143):

Accepting illness is a way of making it our own. It is a creative act, unique to each individual. It requires all the curiosity, imagination, intuition, commitment, and faith necessary to any other creative endeavor. We work with what we are given and use whatever tools we can find, often discovering we have many more resources than we thought. The act of accepting illness changes not only the experience of illness; we undergo a metamorphosis as well.

Flying without Wings is an account of Arnold Beisser's life since the onset of polio at age twenty-five. It left him paralyzed from the neck down and unable to breath outside an iron lung. Beisser had just completed medical school and won a national tennis championship when "without warning my body failed me. In a few hours I was transformed from a doctor into a patient, from an athlete to a cripple. Polio ravaged me so I that I could not move. I could not stand, walk, sit, eat, drink, or even breathe by myself."

Beisser continues:

My physical world had shrunk to the small room that contained my iron lung. My field of vision was limited to the ceiling and what was reflected in the mirror on my iron lung. In the evening, when the world grew darker, my world shrank further. I could no longer see the pattern on the ceiling, and the reflection in the mirror was dim. Not until two years later, in my fourth hospitalization, could I turn my head to the side enough to look down a corridor outside my room.

One evening, lying there alone, feeling particularly hopeless and bored, I looked down the corridor wishing for, perhaps expecting, someone or something. But I saw only the darkened hallway with a few doors opening into it. There was no activity, and there were no people to be seen. My despair mounted, and I felt as though I could no longer stand it. Then, slowly, I began to see variations, shades of gray and darkness, shadows and light. The doorways opening onto the corridor formed subtle geometric patterns according to the different ways the doors were ajar. I began to look carefully and wonder at this scene that only a few moments before had depressed me so. It now seemed startlingly beautiful. My perception had shifted, my eyes miraculously refreshed. This experience was full and whole. I looked down the hallway for a long time. I think that at last I probably fell asleep, but I a not sure.

I do not know how that perception arrived, or why it left, but from then on I understood that what I sought was possible. My task now was to discover how to change from one place to the other. (as quoted from Heiss, p. 142-143)

_____________________________________

I thought that was pretty cool.

Mother's Day

2009-05-10T13:36:00.000-07:00

I woke up this morning with a heavy heart. I couldn't quite figure out why until I realized today is Mother's Day. Even though my mom died over ten years ago I still miss her. Having one's mom die young has an huge impact especially on women.

She was a great mom and well loved. There must have been over 500 people at her funeral. Those short 44 days that she was sick and then after her death brought tons of cards filled with people describing her experience of her. I loved reading the stories people told about her. She made people feel like they were special in the way she quietly listened. She was thoughtful, introverted, and quite self-conscious about her hearing (she became almost deaf on one ear and had loss of hearing in another). She was deeply spiritual and was a devout though liberal Catholic. She loved arts and crafts. She lived her life quietly but powerfully. She was one of the first women to give a homily in the Catholic Church. She loved us deeply though it wasn't always expressed directly.

I learned a lot from her but not enough. None of us had enough time with her. She taught me so much in the way that she died.

Never in a million years would I have imagined she would die at 59.

I do believe she is still with me and at times I can feel her presence. I think she is as horrified by my illness as I am. About two months ago I was feeling particularly down to the point of making contact with the people at the Final Exit Network. That night I had a dream I was riding these really cool bicycles. I was trying to decide between two of them and kept returning to the bike shop in an attempt to make a decision. As dreams do, it shifted and I found myself standing at the checkout counter. My mom was standing right next to me telling me she would be waiting for me when I was ready to "check out." I have found much comfort in that dream.

This post is in honor of my mom. In the realm of the world that we live in I'm unable to tell her how much I love her and miss her. I can only honor her memory.

To those of you who are Mother's, I wish you a wonderful Mother's Day. Those of you who have mom's who are still living, treasure and cherish them and give them a big hug. I wish I could give my mom one more hug...

Measuring Improvement

2009-04-30T12:52:00.000-07:00

I'm laying here listening to my ipod feeling grateful for things like beautiful music, a comfortable bed, my kitty, and my laptop which allows me to connect with others in the blogging world. Sometimes when I'm in a dark place I think of those of you whose blogs I read and who I feel a connection to and I feel a sense of comfort.

I'm still crashing. I woke up yesterday at 4 am. At 6:30 I took an Ativan to help me get back to sleep. It worked but it wasn't a good sleep.

I have to remind myself that, overall, I'm doing better than I was last year. The doctor who diagnosed me gave me such wise advice when he said you can't measure improvement in days or weeks but you have to measure it in months. If I think of it that way I don't feel as discouraged when I have setbacks like this week.

It's time to get my blood drawn again to make sure the Valcyte isn't doing measurable damage but there is no way I'll make it out of the house today. I don't have it in me to fight the dizziness in the car, the anxiety over whether or not I'll faint, etc...The dizziness is pretty much gone but I don't want to push it. I've noticed that while watching TV when the camera pans away I feel a slight sense of vertigo. Hopefully that won't increase. Sometimes I have to close my eyes. I don't watch too much tv anymore since I learned it can take a lot of brain energy to process the images.

This past Monday there was a meeting with the CDC regarding chronic fatigue syndrome. The CDC has been absolutely unethical in their dealings with this illness. They diverted money that was supposed to be used for CFS research into other projects. It's a long discouraging story that needs to be told. I don't know anything about the history but it can be found in Hillary Johnson's book "Osler's Web" and also in Dorothy Wall's "Encounters With the Invisible." Anyway, people with CFS were allowed to phone in during the meeting. Hillary Johnson provides a great summery in her blog: http://oslersweb.com/sb/page.php?ID=74147&post=594304

It's a crime what they are getting away with. I plan on becoming politically active regarding this illness once I finish with Valcyte treatment.

Crashing Badly

2009-04-28T16:55:00.000-07:00

Ugh. If I had more energy I'd be feeling really frustrated. I am in a bad crash. The past week has had its share of stressors both good and worrisome. It's a drag having an illness or disease (I don't know what to call it anymore) where good stress can cause a crash but there you have it.

I saw my dad and LuAnn on Tuesday for a couple hours. It was a short visit that tired me out but I was so glad to see them. It has been a year since I last saw them. They went through the healthcare hell ringer last summer which prompted them to move out of state and leading to the diagnosis that my dad's prostate cancer had returned (he also has chronic lymphatic leukemia). LuAnn has rheumatoid arthritis which is managed with medications but it still gets to her.

Thursday there was a home visit from the vet for Katie which always stresses me out because she has chronic renal failure but is doing well considering. The vet had to sedate her because she is so feisty with strangers. Friday she was barely moving, not eating or drinking which was very worrisome. She pulled out of it and is back to her cute self.

Matt was here from Thursday to today. He is really a great guy and it was great to see him as well.

So it's been a week of stressors. Two of them (the visits) were expected and I kept my plan of pacing. The only thing is it didn't work. I can't figure out what went wrong unless because of the Valcyte stress any little stress right now just puts my body into crash mode. I think too that my adrenal glands might need some extra helps so I boosted my cortef dose from 5mg to 7.5 mg.

Most times I feel like I'm shooting in the dark with this illness. I really want to avoid crashes because for me it means becoming bedbound until I come out of them. Even when I come out of the crash I can't do much. When I'm in one it reminds me of how grateful I feel for what little bit of functioning I do have.

This swine flu thing is a bit disconcerting. Normally I'd let this sort of story pass me by but with my immune system dysregulated and Valcyte lowering my immune system I'm a little worried. All it takes is to be in the wrong place at the wrong time. I really hope people take heed to the warnings and stay home if they feel at all ill.

I'm over this whole Valcyte thing. I've come to the conclusion that it probably isn't going to help very much. I'm glad I did it just because it had been recommended to me by various doctors. I'll stick it out for a total of five months unless I start having consistent improvement after four months.

I'm ready to get on with my life and repairing the damage that Valcyte has caused.

Three Month Valcyte Update

2009-04-19T18:47:00.000-07:00

These past three months have simultaneously gone by quickly and slowly. I have no idea if I'll be a responder. I had hoped to see some sort of consistent improvements by now but it seems the most that doctors really know about Valcyte is that people's' response varies and one can't make any assumptions based on people's response. Some people have few problems tolerating Valcyte and have had good results while others have a horrible time and don't respond and others have a horrible time and good response, etc...

I have developed a new symptom which is a feeling of weakness in my muscles, especially my legs. I've had a few days of rather intense muscle pain also as well as some (what feels like) tendon pain in my hands and my right foot.

I backed of the Amantadine today as well as the methylation protocol supplements. I'd like to back off the Valcyte as well but I read through Roche's information today and it said not to stop Valcyte because the virus (referring to CMV which I don't have but I assume it applies to HHV 6 and EBV as well) can return quickly if the drug is stopped.

As far as improvements I've had some in cognitive functioning and mood but not too much in terms of physical functioning although this is a bad day to rationally evaluate that because of the bad weakness and muscle pain.

My doctor's office wrote back and they want me to stay on it for the full six months.

Kindness...

2009-04-15T17:41:00.001-07:00

I wanted to thank everyone for their comments and for visiting my blog. It is moving to me to feel a part of something.

I found this poem:

Kindness, Naomi Shihab Nye, Words Under the Words, Eighth Mountain Press, 1995

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth
What you held in your hand,
3
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.
Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.
Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to mail letters and purchase bread,
only kindness that raises its head
from the crowd of the world to say
It is I you have been looking for,
and then goes with you everywhere
like a shadow or a friend.

Twists and Turns

2009-04-15T17:06:00.000-07:00

I've been thinking about acceptance a lot. It's key to finding peace in the midst of all this illness throws at us. I believe that once I truly accept this illness then I'll be able to make good choices about my life, my health, and my attitude.

I have about the same amount of power over this illness as I do sitting in front of an ocean wave willing it to stop from crashing on the beach. I do have choices though. One of those involves how I handle my internal life. To what extent I'll be able to recover any external life remains unknown. Right now the only thing I have control over is how I deal with my self.

I've been very self critical with lots of time to examine my life. Unfortunately the depression which can go hand in hand with an illness like this causes the reflections on my life to focus on everything I've done wrong, every single thing and every single person. While useful it becomes self destructive when taken to the extent that I have where I have felt overwhelmed with regret and a longing for the chance to do it over again. The self pity, the derogatory remarks I make about myself, the judgments I have about myself-all these negative attitudes have to stop. It takes energy to have thoughts like this.

To that end I decided to begin Vipassana Meditation this Monday. For Christmas two years ago I was given a meditation CD done by a man named Jack Kornfield. He wrote a book that I read years ago and really liked called A Path With Heart. I started listening to the CD during my rest breaks. I figure since I need to rest I might as well start doing a simple meditation that involves nothing more than simple focusing on the breath (much easier said than done).

The past two days I haven't woken up with that horrible sense of doom and depression. Last night I thought I would write a post today about my mood lifting. I checked my email in the morning and received one which threw me.

I should know by now that one thing this illness promises is to knock you for a loop the first few years. It's like a cruel trickster figure.

The email was from someone I met who also has this illness including chronic lyme. She informed me that the head doctor of the medical group that I see for my CFIDS was having Dr. Montoya speak to them about Valcyte. Apparently they are not seeing the same results that Montoya got. The medical director proceed to tell my friend that not only are they not seeing the results but they are having doubts about using it. I don't think it bodes well that Montoya has yet to publish his results. I know there is a lot of data to be looked at but....

Anyway, I was upset by the fact that my doctor has doubts about this very toxic drug I'm taking. And once again faced with-is this going to be it for me? Is this as far as I'll get? There are people who are able to do much less than me. I'm housebound and sometimes bedbound but I can do chores around the house and I can go on outings more sometimes, not very often, for as long as 4 hours. I'm grateful every day for what I can do. It's just that it's not much and my discouragement is always tempered with the hope that I'll regain more functioning.

I've spent the better part of the day trying to sort through my feelings. I did email my doctor and asked him about what I heard. I don't expect any sort of answer soon simply because it isn't an urgent medical matter.

What my reaction ultimately told me is that I have a long ways to go before I truly accept this.

Katie, my kitty, has been an angel. Early Monday morning I felt a little nose pressed up against mine so I opened my eyes. There was Katie, sound asleep with her nose up against mine. She had curled herself up right near my head. Her eyes were squeezed shut. Today as I was crying she came over and laid next to me and put her head on my shoulder. Its as if she knew how much I needed that sense of comfort.

In the next month I'll be making the decision about whether or not to continue with Valcyte.

I think the treatment that consistently shows the most promising results is pacing.

Valcyte Update and Stuff

2009-04-10T19:00:00.001-07:00

This morning I woke up from a dream in which I was actively part of a community. I felt useful, a part of something, and I was busy! I was sorry to wake up to my current reality. I felt really sad that my dream wasn't my reality. It felt great to feel useful and around people. I knew that there was potential for a tearful and depressing day ahead so I kept distracting myself by reading, thought stopping, and other things. I fought to stay out of that depressed place.

I've been on Valcyte for almost 11 weeks now. This week I have felt much less able to do much of anything. I've had migraines or maybe they are cluster headaches since Tuesday. They start in the afternoon. I was in pretty bad pain Tuesday evening and remembered that my doctor had prescribed lidocaine nasal spray and ketamine nasal spray back when I started Valcyte. They work. They don't take the pain away but I'm probably not using them correctly. I'm hesitant to use ketamine because it has been used recreationally although it's original purpose was an anesthetic for animals. I watched some youtube vidoes of people who had done a lot of ketamine and it wasn't something I wanted to experience. Anyway, I'm grateful they work.

I've just felt very unwell lately with some muscle aches and weakness and increased brain fog. Today I've spent mostly in bed. I'm trying to sort out whether or not I'm crashing because of overdoing it or whether I have some sort of bug or if the Amantadine (an antiviral) is causing some sort of die off or if its because of the Valcyte or what. I still have this illusion that if I can figure out what caused this than I have some control over it.

I think I've been overdoing it and caught a bug.

I've had a lot of trouble sleeping this week. Both Valcyte and Amantadine can cause insomnia (in addition to the CFS). I have to figure out how I can get more sleep.

It's still too soon to know whether or not Valcyte will work but I've been finding myself thinking that if I don't have consistent improvement by 4 months I'm going to make a decision whether or not to continue Valcyte. My doctor said people tend to have an increase in symptoms the first three to four months on Valcyte. I think at this point taking things 30 days at a time feels right.

I'm trying to find a hobby or something but find myself at a loss. I need to build a new life for myself. I still trust that will happen. It's strange adjusting to having my energy levels cut off-similar to an amputation just not visible. I think that getting use to living with an illness like this is similar to adjusting to becoming paralyzed or losing a limb. Only in this case it's losing the ability to create energy in the body.

The Importance of Pacing

2009-04-09T16:31:00.000-07:00

I was reading through Sara Myhills free book on ME/CFS. It's very good and can be accessed at her site http://www.drmyhill.co.uk.

She writes about the mitochondria dysfunction in this illness. I found a section about pacing and thought I would post it below. Knowing that overdoing it causes further damage to the mitochondria takes me out of denial.

___________________________________________________________

Rest and Pacing – Drive your car kindly! It lasts much longer!

“Thou shalt not be thine own worst enemy, but thine own best friend.”

Rest is the single most important factor in allowing chronic fatigue syndrome sufferers (CFSs) to get better. An invariable feature of the history is that exercise (mental, physical or emotional) makes the symptoms worse.

Indeed this distinguishes CFS from depression -

• Exercise tends to improve people who are simply depressed.

• In CFS the desire is there but the performance lacking.

However, all CFSs tend to push themselves to their particular limit every day and therefore do not give themselves a chance to get better. This means they have one day doing as much as possible, then three days to recover.

Whilst you are on this roller coaster ride of activity and dives, you cannot hope to improve overall. Energy has to be carefully rationed so that every day is about the same. This is the most difficult aspect of treating CFS, because this is the very personality that makes people get CFS in the first place.

We now know why CFSs get delayed fatigue – it is because when they use up energy (ATP) faster than they can make it, there is a build up of ADP. Some is shunted into AMP, which is only recycled very slowly, if at all. [Note: Dr. Myhill’s recent research suggests that in CFS the mitochondria's normal ability to produce adenosine triphosphate (ATP) and recycle adenosine diphosphate (ADP) or adenosine monophosphate (AMP) to replenish the supply is compromised.]

Cells have to make brand new de novo ATP from D-ribose, but this only happens very slowly, 1 to 4 days. In the meantime, cells can get a small amount of ATP directly from glucose via anaerobic metabolism, but this produces lactic acid, which causes many of the muscle symptoms.

Most CFSs compare themselves to what they were like before their illness began. This is hopeless. It is vital to work out exactly how much you can or can't do in a day - and then do less.

Imagine that a normal healthy person has £1,000 worth of energy to spend in a day.

• The CFSs only have £100.

• What is more, this has to be spread out throughout the day in such a way that they have £20 "change" at the end. This will then allow recovery to occur.

• Furthermore, you are only allowed to spend a few pounds in one session – then rest.

If you start to get symptoms, then you are overdoing things. Often this means you have initially to do less – but with careful pacing you will end up doing more!

I also like all my CFSs to have a sleep in the day, even on a good day. Homo sapiens evolved in hot climates where it is normal to have a siesta in the afternoon. Most people experience an energy dip after lunch. Young babies and older people return to this more normal sleep pattern and ill people should do the same. An afternoon sleep is normal! I do!

Resting In the Day

By resting, I mean complete rest from exercise, visitors, telephone calls, reading, computers, talking, child minding, noise and TV. All the above count as activities which have to be carefully rationed through the day.

• When you rest, lie horizontal because this reduces the work of the heart (it is much harder work pushing blood round a vertical body, up hill and down dale, than when horizontal and everything is on the flat). Interestingly caffeine helps the body scavenge AMP, so small amounts in green tea, coffee or dark chocolate can be very helpful.

• The second point is to have a proper rest, when you actually go to bed, regularly in the day, EVEN ON A DAY WHEN YOU FEEL WELL. The fatigue in CFS is delayed. If you push yourself one day, expect to "pay" for it 12 to 36 hours later. So just because you feel well one day, don't overdo things or you will be worse off the next.

• Thirdly, do things in short bursts. You will be more efficient if you do things for 10 to 40 minutes (whatever your window of time is), then rest for the same length of time. I had one patient who could only walk 30 meters, but by walking 15 meters and resting, then going on again, she got up to walking a mile a day!

• Fourthly, vary your activity. This applies to the brain as well as the body – listening to the radio or music uses a different part of the brain than watching TV. Washing up dishes (sitting on a high stool, please) uses different muscles than walking.

As You Recover

The first step is to reduce the amount of physical and mental work each day until all days are about the same.

At the same time you will be putting in place all the necessary interventions to allow recovery [see sections in Diagnosing and Treating Chronic Fatigue Syndrome on]

• Nutritional supplements

• Stoneage diet

• Sleep, etc.

Get the regime tight until you get to a stage when you feel absolutely fine doing absolutely nothing!

The level of activity is then very slowly increased each day on the proviso that you continue to feel well.

The key here is to vary activity. Different parts of the brain and body have to be exercised. One of the most active areas of the cortex is that which is concerned with vision. Processing information from a television, for example, requires much more activity than listening to music. Television needs to be rationed.

Similarly, physical exercise should be done using many different muscle groups and initially should be limited to simple stretching exercises without weights.

The level of physical and mental exercise is very gradually increased. It may well take several months before significant changes are seen. To adjust the level of activity to what is appropriate you have to judge things by the next day. If there is delayed fatigue then you have overdone it. There is a very fine “window” between too much and too little. Straying either way makes CFS worse!

One of my patients… has developed a useful technique for rest. Every activity is scored as to whether it is:

• Energy giving (e.g., sleep, lying in bed in a darkened room, meditation),

• Energy taking (e.g., dressing, walking, talking, cooking, cleaning, etc.)

• Or energy neutral (easy reading, easy TV, having a massage, etc.).

Each day is scored in terms of time spent doing each activity and balanced out so energy input equals energy output. Everybody has their own balance. But one can quickly see if too much has been done on any one day, in which case a balancing is necessary. Doing it like this, on a chart, takes the guilt out of resting. It simply becomes a necessity like eating or drinking.

I can recommend Calibre - The Audio Library - a registered charity providing recordings of books to the blind and print disabled (CFS patients qualify on many scores!). The service is free, the voice on the end of the phone extremely friendly. Contact Calibre Library on: 01296 432 339. [In the U.S. a similar free service is The National Library Service for the Blind and Physically Handicapped, which offers talking books/magazines and talking book players through a cooperative network of local libraries.]

Once you get to the stage when you have good levels of activity and feel fine, then, and only then, dare you relax the regime.

This of course is a council of perfection - actually nobody does it this way because life has a nasty habit of getting in the way. There is usually a trade off between how you feel and how much you can do. But the business of feeling ill is a disease amplifying process - it can actually make you worse as cells are damaged - so do work hard at pacing.

Work and Pacing

There is a whole spectrum of CFSs - from those professional athletes who cannot do their marathons in less than 2 hours 12 minutes - to those who are bed ridden. Some CFSs can manage full time work, but very often are operating "on adrenaline" and crash when they give it up.

This crash can last several weeks or months. Many can do some part time work, in which case late afternoon work is the best. Don't try to change the job you are in; never resign or you will lose valuable rights. I am happy to give sick notes, write to companies/bosses, do letters for early retirement, and fill in disability living allowance forms, etc. for my patients. I never used to charge for these letters, but because there is so much paper work now, I make a charge reflecting admin/time costs.

The mitochondrial function test results are very useful to include in these letters, because these give us an objective measure of fatigue. [See Dr. Myhill’s recent article with Drs. John McLaren-Howard and Norman Booth - “Chronic Fatigue Syndrome and Mitochrondrial Dysfunction” - introducing “a biochemical test which measures energy supply to body cells and therefore fatigue levels in people with Chronic Fatigues Syndrome/Myalgic Encephalomyelitis (CFS/ME).”]

If you work to your limit, then you should do very little outside work. Spend the evenings and weekends resting.

Get Organized

The people who get CFS are those who "burn the candle at both ends." They hold down a demanding job, care for a family and are often active sportsmen/women. I see many top athletes with CFS - professional footballers, cyclists and swimmers, decathletes, many county badminton, hockey, cricket and squash players, and several quality marathon runners. These people are the very ones who find it difficult to ask favors of others.

• Ask other people to do things.

• Stop being house-proud.

• Get a cleaner and dish washer.

• Simplify your life.

• Accept offers of "meals on wheels" from others.

• Standardize shopping lists so you don't need to think each time.

• Arrange for as much food to be delivered as possible; e.g., have a standing order at the green grocer for fruit and vegetables, with the fishmonger, with the butcher, etc. Many city areas have organic food delivery.

• Have standard menus every week so you don't need to think about what to eat.

• Choose foods requiring minimal preparation.

• Use the internet to order from supermarkets [e.g., www.tesco.com] so that foods are delivered to the house directly - a weekly standard “shopping basket” takes energy to set up but takes the mental and physical effort out of shopping thereafter.

• Take advantage of a washing machine and drier.

• Give up ironing - a nonsensical, energy sapping waste of time and energy. Ironing came into fashion to kill nits and fleas in the seams of clothes and had a purpose once! I don't iron, but then I always was a scruff!

• Do things by the clock. We are creatures of habit and the physical body likes things to happen on a regular basis - you ask any farmer who keeps animals - they thrive on routine. Sleep and eat at regular times and pace activities so you do about the same every day and during the same time slots. I know that life has a habit of getting in the way of this ideal, but as a general principle, stick to it.

I always think life is all about going from one crisis to the next. If every bit of your energy is taken up every day, then you don’t have any left in reserve for the crises. This is another good reason not to constantly push yourself to your limit.

The Ten Commandments for Reducing Stress

1. Thou shalt not be perfect or try to be.

2. Thou shalt not try to be all things to all people.

3. Thou shalt leave things undone that ought to be done.

4. Thou shalt not spread thyself too thin.

5. Thou shalt learn to say "NO."

6. Thou shalt schedule time for thyself, and for thy supporting network.

7. Thou shalt switch off and do nothing regularly.

8. Thou shalt be boring, untidy, inelegant and unattractive at times.

9. Thou shalt not even feel guilty.

10. Thou shalt not be thine own worst enemy, but thine own best friend.

____
* Dr. Sarah Myhill, MD, is a UK-based fatigue specialist focused on nutrition and preventive medicine. This information is reproduced with kind permission from her educational website (DrMyhill.co.uk)® Sarah Myhill Limited, Registered in England and Wales: Reg. No. 4545198. It is excerpted from her free 179-page online book, updated Jan 2009 - Diagnosing and Treating Chronic Fatigue Syndrome.

2009-04-03T12:18:00.000-07:00

From cfids.org:

This was written by a prominent CFIDS specialist MD who practices in Salt Lake City, UT:

From day one of a CFS diagnosis, it’s bad
news. People around an individual with CFS
may not understand the illness, how it feels or
what to do about it.

At first a CFS patient might
receive attention, but as months go by without the kind of
physical improvement people expect, those who once
offered support may disappear. The ongoing physical limitations
are accompanied by ongoing emotional trials.

Anacute illness is definitely traumatic, but most can muster a
good fight while actively seeking a diagnosis and some type
of rescue care. It’s living with the “C” in CFS that really
gets old. (Editor’s note: see “Trauma & CFS,” page 10.)

CFS can be especially punishing compared to other
chronic illness. Because the symptoms are difficult to
measure or prove clinically, they may be met with doubt
or disapproval by those whose support is needed most.

Because CFS follows a relapsing and remitting pattern, in
addition to feeling limited most of the time, patients can’t
predict when they’ll feel even moderately better or worse.

Because of the characteristic postexertional symptoms of
CFS, an honest effort to function or simply have a little fun
is often punished mercilessly by a relapse of pain, fatigue
and brain fog.

There are innumerable personal losses in the
present and potential losses projected far into the future.
Focusing on the loss can lead to a downward spiral that
can impact life in very tangible ways.

In order to thrive, anyone living with CFS must repeatedly
rejuvenate the will to live and to find joy in living,
even while chronically ill. It can be done! No one and no
disease can take away the freedom to choose how to
respond to a difficult situation.

Tips for Dealing with People with CFIDS

2009-04-03T12:07:00.000-07:00

This is from the CFIDS Assocation of America's website:

How to Help: General Suggestions

The keys to helping a person with CFIDS are education, communication and emotional support. If you don't know how to be supportive, ask the PWC for suggestions.

Educate yourself about CFIDS. Stay informed by reading the CFIDS Chronicle, the CFIDS Association's quarterly publication with articles about research, treatment and coping.

Validate and acknowledge the seriousness of the illness. Be as patient, caring and understanding as you can be.

Attend medical appointments with the PWC to show support, take notes, offer your observations and verify reports if necessary.

Offer to help in specific ways, e.g., running errands, balancing checkbooks, managing finances, helping to fill out disability forms, tracking health insurance claims.

Enjoy activities together, modifying them as necessary, and talk about fun times you've enjoyed together. Keep plans and expectations flexible to accommodate unpredictable symptom changes.

Avoid comparing the way things used to be to today.

Create a "new normal," modifying goals and plans as necessary.

Keep lines of communication open. Be willing to listen, but let the PWC know when you are overloaded and need a break. Don't let CFIDS-related anger control your discussions. Sick people may overreact, lose track of conversations or have difficulty expressing their thoughts. Memory impairment may cause PWCs to interrupt ("If I don't say it right now, I'll forget it"). If the interruptions are frequent or distracting, suggest that they jot down notes during the conversation.

Avoid making well-intentioned comments that may be perceived as insensitive and hurtful, potentially damaging closeness and trust. Examples:

What do you expect me to do about it?
You'll just have to live with it.
If you just _________, you'll get better.
Pull yourself up by your bootstraps.
You can beat this thing if you really want to.
I have a lot of the same symptoms as you do.

Healthy people do experience some CFIDS symptoms from time to time, although not as frequently or severely as PWCs. Statements such as, "I get tired, too," and "You're not the only one who's forgetful" may cause persons with CFIDS to feel that they and their illness are not being taken seriously. Instead, try to word your comments constructively. Examples of helpful responses are:

I'm sorry you're feeling so badly.
I wish I could make it better for you.
I know this is difficult for you.
You're handling this illness so well, but I know it really gets you down sometimes.
What can I do to help?

Be cautious about giving advice. The PWC needs empathy and validation but may reject well-intended but unwanted advice or attempts at "fixing." Often he or she just wants you to listen.

Remember: This illness isn't logical. Respect the need to prioritize, to rest, to discontinue any activity at the first hint of fatigue. The PWC may need to change plans at the last minute or refuse to do certain things which may produce fatigue or relapse.

Contribute to the battle to conquer CFIDS by making a tax-deductible donation in honor of your loved one.

Suggestions for Friends:

Friendships may become strained, may be strengthened, or may dissolve in the face of chronic illness. The give-and-take in a friendship becomes unbalanced when one person is ill. Many ill people become reclusive and distant, especially during relapses, as spending time with people requires energy. Since energy is in short supply, your contact may be less frequent than in the past.

Recognize that although the person may seem "normal" when you're together, you may not see the relapse which follows activity. Many people with CFIDS want to function at their best when with their friends, but privately pay a price later.

Your friendship is needed now more than ever. Show that you care.

Discuss feelings of rejection and try to work through misunderstandings. Ask questions about things you don't understand. Discuss options and set ground rules for continuing the friendship: Will there be less contact? Who will call whom? Will it be clear when he or she needs to end a visit or conversation?

If you have doubts about your ability to continue your friendship, examine the reasons for this: Fear of contagion? Anger about postponed plans? Tired of hearing about complaints and symptoms? You may be able to solve these problems together and continue the friendship with mutually agreed-upon changes.

If you are unable to continue your relationship, express this in a straightforward, yet caring manner, rather than simply disappearing. Let the person know that he or she is not the problem; the illness is.

Towanda! A Rant...

2009-04-03T11:01:00.000-07:00

I woke up this morning at a decent time-9:00 instead of the usual 11 or 11:30. This is the third time this has happened this week.

I woke up feeling okay and better than okay emotionally. I actually felt good. And I'm still on Valcyte.

I'm also angry which I think is a good thing because it means I have the energy for it. I'm angry about the various people that have slowly dropped out of my life. I'm quite aware that I haven't been the happiest person lately. I think that's why certain people have fallen by the wayside. But the Priest?

I met with the Priest over a month ago. I asked him if we could meet again. He hesitated and then said why don't you email me (I also asked for a book recommendation) and I'll recommend a book and we'll go from there. Well I emailed him but haven't heard anything back. I keep checking my email in the hopes of some response but nothing.

More than a few months ago I was told a friend wanted to get together. During the move I saw this person and said let's get together. The look on this person's face told me everything I wanted to know. Needless to say I have yet to see or hear word one from this person since I got ill.

And there are a couple others who have just stopped communications. I haven't been the best at returning emails. Sometimes it's like that with this illness. There are times when all I can do is manage the day or maybe post an entry in this blog.

So I guess I'm at that point that all of us with this illness go through. Another layer of the old life dies. It's a harsh reality. There are some people who are not strong enough to be around someone with an illness such as this. These are the people that don't have the gumption to face some of life's realities. They need people around them to be happy. Or at least have the decency to ACT happy.

So yes. I've been grieving, I've been depressed. I'd be crazy not to be going through this process. But I'm doing something about it. I'm not sitting by passively being a victim in all this. I take whatever action I can take. When I'm feeling really bad sometimes I write about it, or I'll look at beautiful photographs on the computer, or listen to music, or read. Sometimes I curl up and cuddle with my kitty. Sometimes I wallow in self pity.

I'm tired of making excuses for why people don't call or email or stay in contact. I'm done making excuses. What if this happened to you? God forbid. What if you suddenly found yourself in my situation? What if you found that you couldn't pursue your blossoming dream career? If that weren't bad enough then you find that you can't leave the house because you are so dizzy? Grocery shopping? Forget it. Getting a haircut? Nope. Then you realize it's not a temporary thing? And then you're friends stop contacting you? And you find yourself alone and frightened and dependent. Then you come to the realization that the medical profession doesn't know jack about this illness. And those government programs you paid into since you were sixteen? Forget being able to access it without a two year fight to get the money you deserve. And then you have to spend money to hire a lawyer. It's a grim reality. Yet in spite of this all of us with this illness continue to live and even live enjoyable lives in spite of it.

I'm a baby when it comes to this illness. People who have been sick for years and years are very wise and incredibly strong people. These are some courageous people. They are the "elders" in all of this and they are people I look up to. I thank God for them.

I've spent the last year in sort of a denial. I've undergone treatment for lyme disease, babesia, mold illness, and am now Valcyte. I've researched this illness to death. I've gone to various doctor's. I've taken a self help course. I've survived the devastation this has caused to my external life.

And then there are the thoughtless, hurtful comments people have made. One person commented after hearing my doctor had died and I had to have toe surgery what in god's name has this woman done in a previous life! and something about my bad karma or my overhearing this same person say disparagingly about all my supplements good god why all these supplements or something like that. I've stood by and done nothing. Or my ex-acupuncturist telling me I need to laugh more or breath deeper or get out of my environment or that it's all in my head. Or there's the "don't you get bored?" comments. No I don't get bored. I'm too sick to be bored. I'm too busy figuring out how I can get more functioning. I long for boredom! And karma? Don't we all go down that path? I sure have thought that I did something horribly wrong to deserve this. It's awful thinking. These are some of the more benign comments.

It's bad enough that I've lost my old life. And yes I have lost my old life. I'm tired of people telling me I'll get back to it. You know what? I won't. I'm trying to get through my grief about it and then discover my new life.

I know people feel helpless when it comes to this illness. You don't think I feel helpless? I'm tired of taking care of others around this. Really I don't need anyone to DO anything or FIX anything I just need contact. It's very simple. Just contact and a willingness to be with me as I cry about this or be with me in the dark times not just the good ones.

I've been lucky that my family believes me. I just wish we were all a little closer but we're not.

I'm very grateful for my blogging group-the people who comment here. I can't express how much it means.

On another note I downloaded all the forms from Bruce Campbell's website. I'd post the link but I can't remember it and I have to keep writing or I'll forget what I want to say. Anyway, these forms will allow me to track my symptoms. There's a great one about pacing. So I'm going to learn how to manage this illness. I also sent my CFIDS doctor a form for handicapped parking.

I plan on having a good day. It's a nice feeling.

Ramblings

2009-04-02T15:44:00.000-07:00

I'm really trying to work on acceptance and am finding it's a circular rather than linear process. There are moments when I can accept this new reality. This is usually followed by some fear because I find it quite scary to admit to myself that I'm this sick. And that I really did lose all that I did.

A couple nights ago I was watching a very interesting documentary about the first plague that hit in the 14th or 15th Century wiping out close to half the population in the world. As I watched I tried to put myself in their place wondering what it must have been like. It sounds horrific. I was struck by this fact: new life came out of that period of time. The Renaissance Period followed this period of darkness and death. It was a good reminder that rebirth follows death. The word Renaissance comes from a french word meaning rebirth. I believe that psychological rebirth follows the psychological death experience. I just have to get there.

How do I do that? I think it means bearing the unbearable until something new arises whether that new thing is a new attitude, a new relationship with myself, acceptance, a sense of peace, who knows.

I don't know what's next. I do know that this is a very difficult reality to get used to but I'm convinced it's possible because others who have commented on my blog have said so. Right now I'm taking it on faith.

Treatment Updates:

I've been taking Amantadine since Saturday. This time my doctor prescribed liquid Amantadine because I can't swallow pills. He says Amantadine is not only an antiviral but also helps the brain produce dopamine and norepinephrine-both of which can become depleted in the brains of people with CFIDS. It's too soon to tell if it's helping.

I started back on D-ribose three times a day. I'm glad to report that I'm not feeling as much cramping in my muscles (especially the calves) and not as much muscle pain.

I've increased my potassium intake because my doctor thinks my potassium levels might be too low (causing muscle cramps). He wanted me to take prescription potassium. I picked it up at the pharmacy but the pharmacist didn't do a consult with me. I always crush my pills and my doctor knows this. For some reason I decided to look up the prescription on the Internet. I'm glad I did because the prescription was for extended release potassium. Had I crushed it and then swallowed the crushed powder I could easily have had a heart attack because it would have been too much potassium in the bloodstream. This is a good reminder for me to always look things up. I just can't count on doctors and pharmacists to provide the information.

I've been on the methylation protocol (simplified) for maybe eight months? I think it is helping a little. This is a very slow treatment to restore the methylation cycle. It can take a year or two for improvement though some people have had dramatic improvement in less than that time.

It's been two months, one week and three days on Valcyte. I think it might be helping a little but I won't know for sure until six months but in four might have an idea of how much it will help.

Sleep is challenging but I find that if I take 1mg of sublingual Melatonin, 300mg Gabapentin, 1mg Klonopin, and 20 drops of liquid doxepin that I can get at least 8 hours sleep but it's still a fitful sleep.

I have to figure out a way to deal with the isolation and loneliness of this. I woke up today feeling it acutely. I actually went out to get my blood draw a week early just to be around people. Then I went and picked up a prescription and sat in the parking lot and simply watched people.

There's just a lot to get used to.

Updates

2009-03-25T15:41:00.000-07:00

I've been feeling a bit guilty for not blogging much lately as well for the emails I have yet to send. I haven't been able to muster up the mental energy to write. Also, I've felt too depressed from the Valcyte and I just don't want to blog about depression anymore.

Today though, I've been given a reprieve from the Valcyte depression. It's nice.

I also see a little glimmer of acceptance on the horizon. So I have what my doctor calls "a profound case of CFS." It doesn't mean I can't have a life that I enjoy.

I've been doing a lot of thinking since my talk with my CFIDS doctor yesterday. I cried after the conversation and felt the heaviness of grief, sadness, and self pity sitting on my shoulders. I'm tired of that trio. I really am. While I think it's important to be with the feelings, at some point I have to say enough already. I'm also fed up with all the ways I beat myself up about all the ways I fail people because of this illness. I'm tired of wasting energy with these thoughts.

Being hit with this and having my external life taken away takes awhile to get used to. I've found there are no books on the emotional impact of having this illness but that's another topic.

I had a phone consult with my doctor. I'm 66 days into taking Valcyte. Last week I had so much fatigue that I had to cancel lunch with my sister. She was not only coming over but bringing lunch leaving me with nothing to do but sit and talk but I was too fatigued for that. I've also been having increased muscle pain. Not just achiness but pain along with cramp like sensations in the backs of my calves. The muscle pain was fairly intense. My doctor didn't know if it was from the Valcyte side effects, the cfids itself, or that the Valcyte is working on something. There are simply no answers. I won't know anything for six months.

I asked again what he thought the cause was and this time he said mitochondrial dysfunction. Prior to this his answers have varied from brain inflammation due to infections (bacterial, viral), toxins (mold). But this was the first time we've talked about the mitochondria. I'm aware of Dr. Myhill's recently published article. My doctor said some people have a chronic viral infection that damages the mitochondria-treat that and things improve. Others, have a hit and run infection that leave the mitochondria semi permanently damaged. He said the only way to fix that is "through stem cell therapy which costs $15,000 and you have to go to Mexico." I don't believe that's the only answer but who knows.

I think and fear that I fall into the latter category of a hit and run infection. My RNASE L was normal but the quantification was somewhat high. My NK test was normal (although it was run through Quest Labs which just reports a number and doesn't provide a panel. Quest Labs is good for testing for a few things just not NK function).

This is why I cried yesterday. If it's a hit and run infection, I have permanent damage to the mitochondria which is the most important part of the cell in terms of energy production. Also, a majority of mitochondria reside in the heart muscle which oftentimes leads to heart failure secondary to mitochondria dysfunction. Dr. Cheney believes that cfs is a way the body prevents the heart from failing.

So I turned my research efforts toward understanding mitochondria dysfunction. I spent a little time studying it today. The many supplements I took last year in an attempt to treat this failed but I was also living in a moldy toxic environment, hadn't treated lyme and babesia, and hadn't treated viruses. I started back on d-ribose (5 grams 3x daily) hoping this will ease some of the muscle pain and achiness.

What I was confronted with after talking to the doctor yesterday was the very real possibility that I might not get much better than this and maybe the only thing I could do was prevent myself from becoming bedbound. My true belief is I will get more functioning back but maybe not as much as I'd hoped.

I'm trying to come up with some ideas for how to live a life I'll enjoy regardless. I used to do stained glass many years ago. I'm finding myself really interested in starting that back up again. To do that I would need to take a class and get some new supplies. To take a class I need a little bit more energy.

I also need to figure out a way to get licensed or let it go completely. I may need to let it go because the process of getting licensed is quite stressful and takes a lot of energy. It's just that I was so close.

In the meantime I have to figure out how to get rid of a wasp problem that is preventing me from being able to sit out on the back porch and read. I swear these wasps are gunning for me. Everytime I appear they show up like bullies sending me scrambling to get back inside (which is hard to do when one doesn't have energy). They are building two nests right near the door. Today I thought I would fool them by taking out the garbage by going out the front door instead of the back. It didn't work though.

I think it's time that I claimed my sense of self back from this illness.

Taken Down a Notch

2009-03-20T16:55:00.000-07:00

I think the Valcyte has taken me down a notch after 60 days now. For some reason I erroneously thought that because I made it through 8 weeks with some physical effects that somehow I'd escaped.

The past couple days I feel like my body has down shifted into first gear. I'm fatigued and kind of weak. My muscles, especially my back, are incredibly achey. Surprisingly so. I also feel a sort of apathy. The apathy feels almost protective, as if its a way to conserve energy.

At the same time, I've having more trouble sleeping. I've read these are all sort of typical experiences of Valcyte. They are listed as side effects but could also be signs the Valcyte is working.

Lately I've been thinking about how this illness really forces one to redefine oneself on every level. For me it's a slow process because first I had to get out of denial about how serious this is. While I know it at one level, on another level I like to tell myself stories that maybe I can fix this somehow. I do believe I can make myself "weller" but I don't think this is curable. I still remember the sense of relief I felt when the rheumatologist said "what you have is viral" (I thought-oh, good because that means it will go away), "that is very serious and can be very debilitating and is called something like chronic fatigue although that is a horrible name for this (it still didn't sink in because I thought 'oh good it's chronic fatigue-easy to fix with some rest'). He could tell I didn't get it so he continued "it's like HIV but it's not or Hepatitis C but it's not" (I felt puzzled at this point thinking 'but those are serious illness/diseases'). On another level I knew though because I asked him what my quality of life would be like. That's when the room became very still and he looked right into my eyes and said quietly, "I don't know." That's when a wave of anxiety and fear washed over me.

If I get the energy I might go through the various sites I visit and write down all the tips people have written about being on Valcyte. That's something that would have been really helpful to me. My experience so far is that it's been both not anywhere near as bad as I expected but at the same time worse that what I thought.

Fifty Two Days

2009-03-11T18:23:00.000-07:00

Today is the 52nd day on Valcyte. It's been a rough ride but I think I might be having improvements. Since Saturday I've been able to leave the house for at 2-4 hours at a time except for Monday.

Today I shouldn't have left the house because I was feeling really achey and really fatigued. When I was first getting sick we went to visit my dad on my birthday. I was so overcome with fatigue that at one point I just laid down on the patio outside and slept for hours. I knew something was wrong but thought it would be remedied with rest and a good diet.

I figure if I can at least do short updates, it's better than nothing at all. The depression has been so bad I've just been struggling to get through the day. Luckily I've had a nice break from the depression as well (it's there in the background but not overwhelming). I'm aware that it's Valcyte induced depression-hopefully for a good reason.

Thank Goodness for Poetry

2009-03-06T19:39:00.000-08:00

Oceans by Juan Ramón Jiménez translated by Robert Bly in The Soul Is Here for Its Own
Joy (HarperCollins publishers, 1995) p. 246.).

I have a feeling that my boat
has struck, down there in the depths,
against a great thing.

And nothing
happens! Nothing ... Silence ... Waves....

—Nothing happens? Or has everything happened,
and are we standing now, quietly, in the new life?

Is It Worth It???

2009-03-06T16:24:00.001-08:00

I committed to writing down my experience with CFIDS and then with Valcyte. I really wish I were in a different state of mind. It sounds like I'm always depressed. Although it's true lately (since being on Valcyte) I'm not always depressed.

The question has come up for me lately about whether or not it's worth it for me to continue on with Valcyte. I won't make the decision without the help of my doctor. Each day has become an agonizing struggle to make it through the crippling depression that has occurred since starting Valcyte. This is an entirely different ballgame. Tuesday I was reading through news stories and came across one about an organization called Final Exit which is a hastened death network for people who suffer from incurable illnesses. Apparently a couple people in the organization have been charged with a crime. I found myself going to their website to look them up. Then I found myself in tears when I realized they send people to be with you at the time of death. I find it ironic that this illness is so isolating but that I could invite people to my death if I wanted to.

That night I had a dream. I've been having lots of dreams with my mom in them. Nightly in fact. That night I dreamt I was trying out two different bicycles. I was trying to decide between the two. For some reason I couldn't purchase them that day but kept going back to look at them. I really liked the bikes. The day came where I had the money to purchase one of the bikes. I was checking out. While I was checking out I realized my mom was standing right next to me waiting for me to check out.

I know that depression can be a side effect of Valcyte. I keep telling myself that maybe it's working on a couple viruses. HHV 6 is associated with depression. Apparently one of the proteins produced by it (?) can cause depression. It's not fun. And I'm only 47 days into it. I have 123 days left on it.

But I have to ask myself if I'm crying at the philosophy of organizations like Final Exit-is this worth it?

Physically I'm having some improvement. Not much but there is some. I have some GI symptoms now that I didn't' have before but physically I find Valcyte not bad at all. In fact, the herx I felt from antibiotics was worse than this. It's the mental/emotional part that I can barely take. I manage to survive minute by minute sometimes.

And then there's God. I've been praying every day for some peace or some relief or to feel God's presence. Silence. I don't get it. Not that I'm entitled to any sense of peace or anything for that matter but I just hoped for something.

I'll continue to hang in there...