Saturday, May 31, 2008

Wild Geese

You do not have to be good.
You do not have to walk on your knees
For a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about your despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rainare moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting--
over and over announcing your place
in the family of things.

Poem by Mary Oliver

Numbers

This might be an interesting post. My brain fog is really bad today along with some weird mood symptoms which turns out can be more signs of herxing. I have felt awful, awful, all day. I couldn't listen to music and I've mostly layed silently here on the couch. I don't have the muscle aches but the only way to describe what I've been feeling is that I never want to feel it again. I couldn't sleep last night-last time I looked at the clock is was 2:35 a.m. even with the Doxepin. I now know it was a precursor to a bad day.

I really get it now about how you can tell that kids don't feel well sometimes only from their mood-they get irritable, apathetic, etc...It seems that my age has changed. The second number is now silent so I'm four. The second number just no longer exists. I find myself saying and doing things that I probably did when I was four, or um, maybe younger. The second number acts as a distant observer watching myself but powerless to exert any influence about making me act my current age. In light of the 5th Amendment (is that the one), I won't cite any examples. We'll just leave it at that. 'nuff said.

I was looking more closely at my bloodwork and the numbers tell a different story than what I originally thought when I first saw them. My white blood cell count has dropped in the past few months-from 7.1 to 5.8 which brings it to the low normal range. With this illness anything near the high/low range is actually considered abnormal. I know enough about bloodwork to know that some fluctuations are normal but this drop needs further investigation. Also, my tsh level is rising from 2.72 to 3.77 which, according to the new reference range set by the endocrine association is considered high which means my thyroid is not functioning properly. Darn it. When I talk to the doctor on June 17 I'll ask him about thyroid meds. He had suggested a trial of thyroid medication during my initial evaluation. I already know my adrenal glands are shot. The other significant change is my platelet count has dropped from 272 to 239. I don't know what all the blood stuff means but I do know it means my body-every system- is being affected by some pathogen, most likely multiple pathogens. In fact the whole cbc panel has decreased but the other decreases are not significant.

I finally heard back from the director of the HHV-6 Foundation. I emailed her again with my new test results. Her opinion was that my HHV-6 Titers are too low to warrant going on Valcyte. That coupled with my dropping white blood cell count means I will have to find another way to get well. Valcyte can cause white blood cell counts to drop to dangerously low levels. She made suggestions about more tests to get and again stressed getting an endoscopy to test for enterovirus. She also recommends testing for echoviruses, and something else.

Each time I think I'm on one path towards getting better, the road changes and I find I have to negotiate different territory. I just want to have something that is treatable. As I was trying to get to sleep last night I found myself obsessing about what more I can do to get some improvements. I know I need to do something about my immune system. It's not working right.

I don't understand why this had to happen. I just don't.

Thursday, May 29, 2008

Test Results

I got the results of bloodwork done last Thursday. Luckily my doctor's office manager had no problem making copies of the results and giving them to me without the doctor going over them with me.

My thyroid looks fine, fibrinigen was normal, cbc looks normal although my white blood cell count is on the low side. I show no antibodies for cytomegalovirus and very very low for parvovirus b19. My HHV-6 dropped from 1:320 to 1:180 (1:10 is considered normal) so that's still pretty high. There are more tests I need to get but it takes twisting my doctor's arm and I don't think the name dropping will work again. I can't figure out why my symptoms are so bad. Today I walked to the post office-a mere 2 blocks. As I stood waiting for the postal worker to calculate shipping I felt a little like I was going to pass out. It wasn't too bad but it's always alarming when it happens.

I emailed the executive director of the HHV-6 Foundation again. I'm now pissed off that she has yet to respond to my emails. It's just not right to tell someone they have viral myocarditis and then drop out of site. It's a friggin scary thing to hear. She also mentioned a new clinical trial for people who have this and was going to send the information I prepared to the doctor heading up the trial. I don't care about the trial but I'm getting freaked out over here by my symptoms and no clear direction about what to do. I'm tired of all the guesswork. I guess I thought the bloodwork would point me in a direction and maybe clearly indicate that I should bite the bullet and go on Valcyte.

I'm glad that this illness hasn't affected my hormones levels but I'm alarmed that it could very well be that the virus is attacking my heart and I want some answers. If I could blame my symptoms on low hormones that would have been great and easily fixable.

My next plan is to go ahead and get tested for lyme disease. That would also explain my symptoms and it can affect the heart. I had one test for it which was negative but it turns out that the test is wrong 70% of the time. The test I'll do is through Igenex and is expensive-about $500 but it's 78% accurate. Unfortunately, insurance won't cover it.

Thank goodness I'm selling at least 1 book per day on Amazon.

Wednesday, May 28, 2008

Friggin Car Won't Start

I decided to go to Office Max to buy shipping supplies, CD's to back up my itunes library, and something fun. I really want a new computer with a 15.4 inch screen but it's not a good time to make such a purchase. My laptop is fine but the screen is dirty and I can't get the damn thing clean. My obsessive stuff comes out at stuff like this. I want a shiny new screen every day. It's actually how I'd prefer my life to be but obviously that's not happening. Anyway, it always takes me awhile to gear myself up-like checking in with myself to see how dizzy I am and whether or not I think I'll pass out in the store. I already did that in a restaurant in San Francisco in August and just don't feel like repeating it or else they might start banning me from public places. After making sure I'm not too dizzy, light headed, or fatigued I have to gather my things, make a list, etc. All this takes energy so by the time I finish I need to check in with myself again about my dizziness, fatigue, etc...Things just aren't as simple as they used to be when I could make a quick decision and fly out the door. So I pass all my internal checks and tests and get in the car but it won't start. The engine won't turn over. I guess the battery is dead. I imagine that's how my cells sound.

My new earphones arrived today. I love them. I don't know what model they are but they're made by Denon.

I've developed thrush caused by the antibiotics. I've had it for 2 days now. It's not something to be left untreated and I've been trying not to freak out about it and have been doing a good job. I finally heard back from my doctor who will call in a prescription for Nystatin. He also wants me to stay at 200mg on the Minocycline rather than go up to 300mg.

There's a great song called Bloody Mother F****** A******* by Martha Wainwright. Coincidentally it was the song that was playing as I got in the car right after I met with the rheumatologist who diagnosed me. The lyrics were appropriate at the time and whenever the song comes on I thoroughly enjoy it:

And you have no idea
No idea how it feels to be on your own
In your own home with the fucking phone
And the mother of gloom
In your bedroom
Standing over your head
With her hand in your head
With her hand in your head

I will not pretend
I will not put on a smile
I will not say I'm all right for you
When all I wanted was to be good
To do everything in truth
To do everything in truth

You bloody mother fucking asshole
Oh you bloody mother fucking asshole
Oh you bloody mother fucking asshole
Oh you bloody mother fucking asshole
Oh you bloody mother fucking asshole
Oh you bloody...

I will not pretend
I will not put on a smile
I will not say I'm all right for you
For you, whoever you are
For you, whoever you are
For you, whoever you are

That's how I feel about this illness and that's how I talk to it sometimes "You Bloody MotherF****** A******.

Monday, May 26, 2008

PS

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 and learn to accept it, not as a curse or punishment, but as a gift to you with a very, very specific purpose.

-Elizabeth Kubler-Ross

Purgatory or hell?

What a hellish day it's been. First, I couldn't' sleep last night so I decided to go ahead and move up to the 3rd dose of Minocycline a day early. I have to time it just right-in between drinking milk (which I love) and taking supplements/probiotics. Plus I can't lay down 30 minutes after taking it. I took the Minocycline at 12:30 a.m. and finally got to sleep about 2. I had really weird dreams.

I woke up to the sound of my neighbor talking to some stranger. I got up and looked out the window and saw my neighbor talking to what looked like a blond "party girl" and her friend who was wearing grey sweat pants with the work PINK stamped on the butt in large pink letters. I was feeling a little shaky and off balance most likely side effects from the Minocycline. I shouldn't have done what I did next but...

I flew out into the living room where Daphne was peacefully drinking tea and working on her laptop. I said we have to talk the woman out of moving in here! Our noisy neighbors moved out yesterday. It's such a relief. They are really nice people but big partiers who constantly played loud music. We were hoping for some nice regular neighbors that we could potentially become friends with.

Anyway, Daphne calmly replied Joan is already trying to talk her out of it. Apparently Daphne had been eavesdropping on the whole thing. Well that wasn't good enough for me so I hastily put on some sweat pants, a sweatshirt, and shakily negotiated the stairs. I opened the door and was about to open the screen door to get the newspaper when blondie suddenly spotted me. Hi! She said. "What's your name" she asks a bit too cheerily. "mine's Laura!" I said my name is .... She proceeds to ask how long I've lived there. I'm standing there with my hair a mess, face pale, wobbly, and dressed like a homeless person. My voice has little expression. By this time I realize I shouldn't have even opened the door as I'm just not in a place to deal with the world. She asked if I like living here. I found myself telling her that it's too loud and that the people who live right behind where she is considering living play their music very loud. She asks "oh, you mean like live music?" Oh my god I'm thinking to myself. This is not working. "No it's not live music. I hear my voice getting a bit curt. "you mean like the radio?" she asks again. I guess it's like the radio. It's just loud music. I realize this has become a stupid conversation and try to turn around to leave. I also desperately hope she won't move in here because she seems like a dumb, spoiled, clueless, party girl. As I turn around to leave I hear her ask "are there any problems doing laundry here?" Glad for another chance to discourage her I say "yes. It's really hard to do laundry. There's only one machine for ALL the people who live in this complex." "Oh that's ok she says (STILL CHEERY), the laundromat is just down the street."

She leaves and my neighbor comes out of her apartment and tells me that she doesn't like this woman. I don't either. I usually don't have such a strong reaction of dislike to people. Far from it in fact but I had a bad feeling about this woman. We'll see.

Today has been really bad. I have felt awful. My anxiety has been through the roof. At one point I was sure I needed to go to the ER but talked myself down remembering what my doctor had told me about the swelling in my brain. I've had pain on my right side underneath the rib cage near liver/gall bladder. Thank goodness it's gone now. I've also felt sick to my stomach, somewhat faint and have no appetite. I won't take any Minocycline tonight. It was too intense today. There are 2 clues as to when I'm feeling really really bad. I can't talk about it and I can't listen to music. I tried forcing myself to talk about how I was feeling but couldn't. Of course that just amped my anxiety because I thought to myself oh no I can' t talk about it that means it's really bad, and I can't even force myself to talk about it, that means it's worse than I thought!

Tomorrow has got to be better.

Sunday, May 25, 2008

Herxing

It looks like the herxing has started though it's hard to tell if it's because of the Olive Leaf Extract or the Minocycline. If it's the Minocycline that's good news because it means I might not have to take Valcyte.

I feel like I have the flu. Muscle aches, stomach upset, bad brain fog (worse than it normally is). The lymph nodes in the back of my neck are painful. And my intestines aren't happy. We went for a tiny drive tonight so I could take pictures of some flowers. During the car ride I felt lightheaded, dizzy, and generally unwell. The herx comes and goes. Sometimes it feels really bad and then fades into the background. Right now I'm lying on a heating pad. The heat helps.

I've read that drinking water with a whole lemon squeezed into it helps along with epsom salt baths. There are some other things that are supposed to help but I can't remember what they are.

If this is what I have to go through to get better then bring it on.

I'll skip the Olive Leaf Extract for the next couple days and see what happens.

I picked out some songs from itunes earlier. I also picked out some new earphones for my ipod since the ones I have need tape to work.

Saturday, May 24, 2008

Spacey

I'm feeling very spacey and a little nauseous. I'm trying to distract myself but am not being very successful so far.

I've sold exactly 100 books on amazon. It feels good. There's something about a round number that is satisfying. I find I have a tiny obsession about round numbers. For example, if I'm entering books into the amazon store I don't feel comfortable stopping unless I stop on a round number. I have 327 books in the store and find myself saying I'll stop entering books once I have 400. That would be fine and I might believe myself except I said that at 100 books, 200, etc... Back in the days of running I wouldn't be able to stop unless it was a round number.

I have some new favorite things to do now. I love finding new music in itunes, I love getting a new box of books to go through. It's great to look through books I might otherwise not have even glanced at. I love taking pictures of flowers. I love color and there is something about the colors of flowers that is fun to capture on film. I love glancing up and seeing a hummingbird.

Hummingbirds have a special meaning for me. My mom loved hummingbirds. Two Christmases before my mom died I decided to make stained glass for everyone. I decided to make stained glass image of a hummingbird. It was getting close to Christmas and I was running out of time. When I was in the middle of making my mom's stained glass a piece near the hummingbird's breast broke off. I didn't have the right shape of the same color of glass to fit the broken piece but I did have a beautiful red piece of glass that would fit so I put the piece of red glass in place of the broken piece. The stained glass hummingbird ended up having a red breast. It ended up looking fine and my mom loved it.

Two years later when she was sick I remember wanting to ask her if it would be alright if she sent me a message after she died letting me know she was okay and that there was a world beyond this one. I never gave voice to my wish but thought about it a lot. Whenever I thought about it I would think about a hummingbird or some sort of bird. Things happened so fast and she died 44 days after being diagnosed so I never even got a chance to express this to her.

A few days after she died I was sitting on their front porch talking to a friend. I remember it being so hot. I was sitting in a chair and glanced up. About 18 inches in front of me was a beautiful hummingbird with a red breast. It hovered for what seemed like a long time though I'm sure it was only seconds. I froze and then started crying. I had never seen a red breasted hummingbird before. This has happened several times over the years.

In certain shamanic cultures the hummingbird symbolizes the connection between this world and the divine. It is also a symbol of accomplishing something that seems impossible. It is also a symbol of resurrection.

Thursday, May 22, 2008

Finally

I've officially started treatment. I took my first dose of Minocycline about 30 minutes ago. This will treat any lyme issues that may exist. It turns out this antibiotic is also used for rheumatoid arthritis and may help with any mycoplasma issues. I'll start with 100mg one time per day because the medication causes dizziness. By Monday I'll take the full dose of 100mg three times per day. If I have lyme I should start herxing by next week.

It turns out the doctor's office forgot to send the anti babesia herbs. I had a feeling so I called them yesterday. Luckily I don't have to wait for the herbs to start the antibiotics.

By mid-summer I'll know if this is the right course of treatment.

Yesterday I was able to convince my primary care physician to order a bunch of non standard bloodwork, something he has resisted in the past. He's your standard HMO doctor who doesn't like sending one out to do tests because HMO's reward doctor's for saving them money. Anyway, I had to get clever and do some name dropping. I felt guilty because he bought it and it worked. It's the truth what I told him. There may be another clinical trial in the works and I might qualify. And they do need these other tests to be done. There are many things that are important to test for when having this illness. Thyroid, poor adrenal functioning, HHV-6, cytomegalovirus, hormone testing, parvo virus B19, mycoplasma pneumonia, Epstein Barr virus, chlamydia pneumonia, and enterovirus. HHV-6, parvo, CMV, EBV, and others can cause viral myocardititis. My doctor agreed to test me for HHV-6 (retest), CMV, Parvo virus b19, a host of Thyroid tests, all my hormones, and fibrinigen for hypercoagulation issues. I already know I have hypercoagulation issues because my sedimentation rate or ESR is only 2. Hypercoagulation gets treated with heparin. I can't remember what causes the blood to get thick but it's not good to have.

I went and got my blood drawn today. It was only 7 vials of blood.

I also was able to get a referral to physical therapy for my shoulder. It was a bit ridiculous though. Here is what a typical conversation with him (my primary care doc) can be like. I'm telling him my shoulder is worse. I can now barely use my right arm because the movement is so restricted. My doctor SHOULD have referred me for an x-ray to rule out a torn rotator cuff but he didn't. Last time I met with him and told him about the pain and stuff he said something like let's not get all up in arms about it (no pun intended). I definitely under report to doctor's. It's a superstitious thing like if I tell the truth then it will make it real. I remember prior to back surgery when it was clear how bad my back injury was ( so bad the doctor from Kaiser tried to talk me out of defending my dissertation and actually wrote a letter to my committee saying I had a serious back injury). Anyway, I was in physical therapy prior to surgery and the physical therapy asked me to rate how much pain I was in using a scale from 1-10 (10 being the worst). She had me in traction at the time. I thought about it for a moment and then said I think about a 1.5. She started laughing and said I was of the patients who most under reported pain.

So yesterday I'm telling the doctor that my shoulder is worse (I can't even reach across my body to soap my other arm). Here's the conversation:

Me: Oh, my shoulder has gotten worse since the last visit.
Doctor: You didn't go to physical therapy?
Me: No. Um, I didn't get referred.
Doctor: You got turned down by the insurance company or you never followed through?
Me: I never got a referral for it.
Doctor: So you never followed through.
Me: No. I never got the piece of paper to follow through with. I, um, I never got the referral.
Doctor: Sigh. Well, we'll just have to do this AGAIN.

I'm like-actually you told me not to worry about it and now I can barely use my arm.

I'd like him to try and live in my body for 24 hours.

I'll be glad when I'm well enough to travel so I can switch to another doctor.

I have to write down a schedule for taking medications, herbs, supplements.

I have to take the adrenal supplements on an empty stomach. The Minocycline can't be taken within 2-3 hours of magnesium/calcium, dairy or probiotics and will have to be taken 3x daily.

It's been nice to be free from the bad anxiety and other cognitive issues that go along with this. It's also nice to be able to sleep a bit more thanks to the doxepin.

Tuesday, May 20, 2008

Confused

I'm sleeping more thanks to the doxepin. I've noticed that I'm getting a little agitated beginning late afternoon. This was happening right after I was diagnosed. I don't know what it is but it feels strange and it's difficult to talk myself out of it.

The doctor forgot to send the A-Bab herbs. I got the receipt for the bill today which didn't include the herbs. I don't think I have babesia because I don't have fevers or night sweats. I do want to get started on some treatment. I need to email him and ask if it's okay if I just start the minocycline. If I'm going to end up taking Valcyte anyway I'd rather get started on it sooner than later and get the whole thing over with.

I've never heard back from the director of the HHV-6 Foundation which is quite frustrating. She tells me I have viral myocarditis, asks me to prepare a case history which I did over a week ago, and then I never hear anything back. I spent a good part of the day last Monday preparing a 4 page report. This was not easy given my cognitive difficulties and fatigue. She was going to forward it to a doctor who specializes in this stuff. I sent another email wanting to make sure she received it and still haven't hear a thing. I don't get it. I'm sure she's crazy busy and I appreciate all the fear she has instilled in my about what's wrong with me. At the very least I have the name of a cardiologist at Stanford.

I've spent a good part of today confused as to where to start with treatment. I want to be aggressive and just do something. I have a feeling I'm going to end up on Valcyte. I have the medication and feel like I should just start it. I'm frightened about starting. But then my doctor (who I like) wants to try the antibiotics to rule out lyme disease-he expressed his doubts and thinks I'll need Valcyte but thinks I should do this first.

I've started the SSDI process and it's not fun. I don't like what it symbolizes. I don't like admitting how sick I am. Somehow doing that application, which is pretty overwhelming, brings it home this isn't a simple case of the flu or a cold.

Sometimes I just want to give up.

Tomorrow I see my acupuncturist. I plan on having a heart to heart with him. It's clear it's not helping. I'm frustrated at his evasiveness regarding my treatment and his false promises of me getting better. He keeps saying I'll be at 70% by summer. I'm not even at 15% and summer is just a month away.

I also see my primary care physician tomorrow. He's the one who tells me I just need to "push through this." He has no idea that I know very well how to push myself. I just can't do it anymore-I can't push my body anymore. If I could push myself I would-I would really like to have a quality life. I don't care about length anymore. I just want to go camping, hiking, visit Yosemite, and the Grand Canyon. I want to develop a relationship with my niece and nephew. I'd like to be able to drive out and see my sisters or my dad. I'd like to be able to go to Best Buy and dream about a new computer or new electronic toy. It'd be nice to be able to have the strength to sit through a hair cut. I miss my stylist in the city. I'm tired of living like this and I'm tired of no one having answers. Or, people making guesses. Or having to choose between toxic treatments that have no guarantee of success. I'm tired side effects and effects of the illness.

I could put a down payment on a house with all the money I've spent on acupuncture, supplements, vitamins, herbs, co-pays for medications, doctor's appointments, medical tests, specialists. It's outrageous. But to do nothing....I just can't do that.

Sunday, May 18, 2008

Twilight Zone

I took .5ml of Doxepin in a successful attempt to help with sleep. The only problem is I'm so groggy and out of it today. I'll reduce my dose tonight. I'm a zombie.

I'm falling down a spiral--destination unknown
Double crossed messenger--all alone
Can't get no connection, can't get through--where are you?

Help, I'm stepping into the twilight zone
Place is a madhouse feels like being cloned

I feel like I'm living out the song Twilight Zone by Golden Earring. I don't feel connected to anything today.

That's it for today.

Friday, May 16, 2008

Treatment Update

I spoke with my doctor today about starting Valcyte. He said it is fine to crush it. We have instructions so thank goodness no worries about that. He also said people tend to feel worse for 2-3 months but that means it's working. The symptoms that get worse are the same ones that I'm experiencing now.

I mentioned how I noticed that when I'm not feeling well my anxiety increases and then it becomes a vicious cycle in my head. The doctor explained this happens because my brain is inflamed and can't process things normally right now. I can't remember how he put it but it was very helpful. The brain inflammation also affects mood, cognition, and other things. Thank goodness I've gotten used to the freaky idea that my brain is inflamed. Right now my anxiety is focused on the heart stuff.

But the real news is that treatment will take be taking a completely different course for the next 6 weeks. Because of where I did my post-doc, the timing of my symptoms, and a strange bite I had I have been concerned about lyme disease. I'm pretty sure that my illness is viral but in many, many cfs people there exists viral as well as lyme, and other co-infections. Our immune systems are a mess.

I'll be taking some herbs to treat babesia and then in 2 weeks start on a 4-6 week course of antibiotics. If lyme and babesia are the pathogens then I'll know in 6 weeks because I'll start to feel a lot better. If I don't feel better than I'll start Valcyte. I expressed wish to be as aggressive as possible with treatment and he said that with this illness one needs to be patient. I thought that was very timely and wise.

I haven't noticed too much of a difference with the mitochondria treatment and b12 injections. It has probably helped about 5%-not much but I'll take it. I'm going to try undenatured whey protein.

I feel good about the way my doctor is approaching treatment. Valcyte is a big commitment. Deep down I know I'm not ready to begin that journey. Maybe I won't need to.

I woke up this morning feeling like shit-absolutely awful. When I feel this way it scares me. My immediate thought was I can't start Valcyte today because I'm too sick. I've been feeling weak, lightheaded, anxious, no appetite, and a wired fatigue. Yesterday it was really hot. Today too. I think the heat and not sleeping well has contributed to how bad I feel.

I'll also be starting liquid doxepin tonight to help with sleep. It also might help with anxiety. I also have the okay to triple my klonopin if need be. I don't want to increase the klonopin because of the addictive nature of the drug and because getting off klonopin can be a nightmare. I'll stick with meditating and see what happens with the doxepin. If I need to take klonopin as needed I'll do that.

Thursday, May 15, 2008

It's Here...

The Valcyte arrived today via FedEx. It's now sitting quietly in the cupboard. All the horrible things I've heard about them making people worse, causing cancer, bone marrow suppression, liver problems, etc... and they are just these pretty pink pills about a third larger than the oblong ibuprofen pills.

I feel nervous about the whole thing. If I don't have enterovirus along with HHV-6 then there's probably a 50/50 chance I'll have some improvement, possibly dramatic improvement.

I'm nervous about the side effects. People report a pretty strong viral die off reaction that I think get exacerbated by the drug's side effects which are similar to the die off reaction. From the various forums I'm on I've read that most people feel pretty crummy for a long, long time-months.

On the other hand the payoff could be worth it. I just wish I knew what my gut was saying.

We found out that we can actually crush the tablets ourselves but need to take precautions not to get any crushed or broken tablet pieces on the skin, in the eyes, etc... because it can cause cancer. Now that makes me feel real good about taking it internally.

It looks like I can start taking it as soon as tomorrow. All these questions come up in my mind-what if I end up getting better without taking such a risky drug? I have a strong family history of cancer-my mom, my dad (prostate and chronic lymphatic leukemia). That gets countered with the fact that I got really sick fairly quickly becoming housebound within the period of 5 months after my first symptom. Also, I've been resting, doing acupuncture (twice monthly since Sept 07), taking supplements, doing b12 shots, eating fairly well, and doing a lot of praying.

Today hasn't been a bad day. I was able to go to the bank and post office. Then I cleaned the living room and did a couple other household chores.

It's 99 degrees outside so I've been taking it easy the past 4 hours. It was hard to sleep last night it was so hot inside so I'm surprised I've done as well as I have today. I'm very grateful.

Thank you for those of you who have stopped by and made comments. It's helpful for a lot of reasons. The main one being that it helps me feel not so isolated and alone on this journey.

Wednesday, May 14, 2008

Yesterday I woke up with a one-two punch. I felt very groggy and out of it. I knew something was wrong but in my fogged state couldn't figure it out. Suddenly I remembered that I was really ill. Ugh. A couple seconds later I remembered that my mom was dead. Double ugh. It was a horrible moment. I haven't had that experience since the first few days after my mom died. It was like suddenly discovering the two most awful things in my life had occurred.

Last night I dreamt that I was being chased by something?/someone? It was absolutely out to get me. I tried getting away but knew that no matter what I did it would get me. Later on I dreamt that I was in a car that my mom was driving. I had my ipod on and was somehow listening in on a telephone therapy session that a Jungian analyst was doing. The car that my mom and I were in wasn't on the ground but somehow that was normal. She asked me which way I wanted to go. I said no! I didn't want to be interrupted. Next some sort of disaster occurred. Neither my mom or I were involved but we watched as others ran to help the victims.

I'm having lots of dreams so I've decided to begin recording them here. My psyche is processing a lot.

No news on the Valcyte front. I haven't received the medication yet but expect to within the next week. The next task will be to find a compounding pharmacy that can do what I need.

I've been a little more consistant with meditating. I have a CFS CD that I ordered awhile back. I also downloaded something from Deepak Chopra. Both are good. In one of them Deepak demands that disease leaves the body-I like that one. My dad did visualizations when he had prostate cancer. It helped him so I'm doing them too. Anxiety can be a great motivator.

I'm trying not to freak out when I have heart palpitations. I don't have them as often as I used to but I noticed they have increased since taking those damn chinese herbs. I swear those set me back. I also know that acupuncture is not helping me. I'll return next week to talk to the acupuncturist-I feel I owe him that.

I think I need to readjust what I take when. I'm noticing that after I drink my protein shake filled with supplements that I don't feel very well. It might just be the nature of my biorhythms but it's worth a change. This is my current routine:

Wake up between 5 a.m. and 10:45 a.m. I can never get right out of bed-I'm too tired so I lay there for about 30 minutes.

When I get up I take 2 supplements for my adrenal glands: adrenal cortex and adrenal medulla (bovine). I have to take these on an empty stomach.

Then I have 2 glasses of Peet's Jasmine Fancy Green Tea with milk and Stevia. I love the taste and it's something I look forward to most mornings.

I have my shake in which I put:

500mg acetyl-l-carnitine
15mg of resveratol
5mg d-ribose
750mg of l-glutamine
100mg alpha lipoic acid alternating with 500mg NAC
11mg of fiber stuff
4grams whey protein
a little olive leaf extract (until I start to herx)
Milk Thistile Complex
16 ounzes of milk
1 tablespoon liquid vitamin b complex
250mg panthotheic acid
probiotic
1gram vitamin c powder

Awhile later I take 2 tsp of cod liver oil with 200mg of coq10 and 2-8mg Prozac

Then I inject myself with methylcobalamin (b12)

Tomorrow I'll start off with some cereal and have the protein shake later on.

Monday, May 12, 2008

Uh Oh...

More news on the illness frontier. I use that word on purpose. I looked it up and here's what wikipedia says about it: In the United States, the frontier was the term applied by scholars to the impact of the zone of unsettled land outside the region of existing settlements of Europeans. That is, as pioneers moved into the frontier zone they were changed significantly by the encounter.

One might wonder what the hell I'm talking about. What does an encounter with unsettled land have to do with having an illness. This illness is "unsettled land." Pioneers were transformed by their encounter with the newly unsettled land. Dealing with all the ups and downs of this illness brings me into the unsettled land within myself. I visit all my fears. I dont' know if I'll be able to navigate the territory. Ultimately though my enounter with this illness is and will continue to transform me.

I'm dizzy as I write-I can feel the lack of oxygen. It's strange and kind of freaks me out sometimes when I think about what is happening in my body. Moreso that I can't do anything about it but rest, use my little energy wisely, and do everything I can to combat the anxiety that goes with this.

There is more information on what might be and probably is happening with me. It looks like I have viral myocarditis. That explains many of the symptoms I have. Now it's a matter of finding out what viruses are involved. I already know that HHV-6 is. I need to get tested for two other viruses (there are actually many viruses that could be involved): parvovirus B19 and enterovirus. Getting tested for parvovirus requires a blood draw. Simple. The enterovirus requires a biopsy-not so simple. The other alternative is to get an upper endoscopy and then have slides sent to Georgetown University. It may be that people who don't respond to valcyte (and who otherwise fit the treatment parameters) have an enterovirus.

I have the name of a cardiologist. Once we switch to the PPO Insurance I will contact him to schedule an appointment.

Yesterday my family all came here for a picnic. It was great to see them. I love them and have missed them terribly. I wasn't feeling very well though I tried to hide it. I ended up having to leave after a couple hours. They all understood. It was sad for me to leave though. When I got home I got right into bed. I didn't even take off my jeans. About an hour later I woke up and felt like crying. I realized they were probably still picnicing and I was less than a mile away but feeling to sick to be around anyone.

The difficulty with sleep has returned. It's one of the conundrums of this illness. Being so fatigued and feels so unwell but unable to sleep. It's because the nervous system is involved. As is often the case when I can't sleep I kept going over the past few years of my life searching for some clue as to what happened. When did I get this? Was there some clue? I remember when I started having symptoms. Sometimes I get obsessed with trying to find out how this happened. I have to stop myself because it yields no good information.

Of course hearing that I have viral myocarditis has brought out worst case scenario imaginings. It's a tragic legacy of my mom's quick death to cancer. They think that those athletes who suddenly drop dead of a heart attack etc... have had viral myocarditis. But lots of people live with it too. I'm lucky that I am finding myself seemingly to be in the right place at the right time. If I don't have the enterovirus, there's a good chance that valcyte will help this.

I pulled out my dissertation today. I'm pretty proud of it and would like the opportunity to work on it and get it published as well as publish articles.

Friday, May 9, 2008

OMG!

Anxiety day today. I received an email from someone who specializes in this stuff urging me to get follow up diagnostic testing for MS. The difficulty swallowing is one of the signs of MS along with a few other symptoms I have. So I spent a few hours of the day freaking out. Stress is something that I can't do anymore. It taxes my body.



I finally had to do some relaxation excersises which helped. I also downloaded some music from itunes.

This is a strange journey. I was bemoaning the fact that I'm not able to live life to the fullest right now. I realized my idea of what living life to the fullest is needs to change. I am living life to the fullest right now. It doesn't matter that I can't work or that I can't go for a hike or walk to the beach or be social. What matters is how I approach each day. For me living life to the fullest means being present as much as possible. Rather than worrying about what will happen or might happen or might not happen for that matter, what matters is what IS happening right now. It's all we have really.

I'm learning what matters too are the little things-like listening to a beautiful song, or gazing at the rich colors of a flower, or hearing a baby's laugh, or having a stranger hand me a dollar bill. It's the little things that make it possible to bear the next moment.

Today I went and sat in my car for a minute. This car used to be my mom's. It might sound strange but I wanted to be somewhere that she had once been. It was comforting for me to sit in the driver's seat and remember driving with her. Sometimes I feel her presence.

Abruptly changing subjects-I think there is a third person living here. I've never seen or heard this person. I've only seen the remnants of them-those extra dishes in the sink. I do so many dishes during the day. The other day I had done two sets of dishes, got in the shower and when I came out there were more dishes in the sink. It seems that my days consist of taking supplements, eating, and doing dishes. When I'm not doing that I'm searching the internet for treatment for this illness.

I do wish the third person would pitch in a little more. At least pay a little rent or pitch in for a big flat screen TV.

Thursday, May 8, 2008

It's Thursday?

Days tend to blend together making it seem like one big long day. Sometimes I feel like Bill Murray in the movie Groundhog Day.

It looks like the herb (as in chinese herbs) experiment didn't work. Although I herxed, I still haven't felt well at all. Not that I ever feel well anyway but my functioning has decreased since starting the herbs. I had high hopes for acupuncture yesterday but other than feeling good for an hour after my appt it has not helped. I had also hoped that we would talk more about treatment and get his thoughts on valcyte. He has many strengths but sometimes he can be quite forgetful (hmm. Maybe he has cfids!) and treatment can sometimes lack a certain continuity. This was one of those times where I was counting on something he had promised the time before but he had no idea what I was talking about. He also didn't have a good explanation for why I'm feeling worse than before the herbs which is upsetting. I need all the functioning I can eek out of my body.

The good news is I've been approved to receive Valcyte through Roche's Patient Assistance Program. It's scary with scary potential side effects but I'm so grateful that programs like this exist. It wasn't all that hard to apply for.

Then I went through a downward turn because I thought I wouldn't be able to take the valcyte. I can't swallow pills and I thought I'd be able to get by like I usually do with just crushing the pill and putting it in liquid. With valcyte that isn't possible. In fact there is a warning in the information that states do not touch a broken tablet.

I emailed the executive director of the HHV-6 Foundation (which is a great site for information regarding HHV-6 which is one of the viruses that I have-the address is http://www.hhv-6foundation.org/). I emailed the executive director and told her my predicament. She replied quickly and sent an attachment which included directions for a compounding pharmacy to use. This moved me to tears. In her email she spoke of her daughter who has nearly recovered from cfs (hhv-6) with valcyte treatment. Most importantly of all she told me not to lose hope. My despair must have communicated itself through the email. So I cried and cried. Someone got it. I wish her a happy mother's day. She also had some suggestions on tests to get for my swallowing problem. I'm just very impressed with her generosity.

The past few days haven't been easy. I've felt a little hopeless-like I'll never get better (this is when I channel Eeyore from Winnie the Pooh). It's not that I sit around and feel sorry for myself. I have good moments and there's a lot I like about life. But having an illness with no cure that literally sucks the life out of me just isn't easy.

I'm going to try and juice everyday. The woman who wrote Crazy, Sexy, Cancer talks about eating green in her book. Apparently it can provide oxygen to my oxygen deprived cells. I juiced today while listening to a cd I bought on cfids.

Sunday is Mother's Day. My family will be coming over to a local park for a picnic. It means a lot to me that they would do that. Mother's Day is always a painful day having lost mine to cancer in 1995. Another one of those tragically unexpected turn your life upside down events. She died 44 days after being diagnosed with cancer. I learned a lot from her and miss her terribly right now. There are just sometimes when you really need your mom. When as bad as things are, only a mom can make better. I wish I could talk to her and ask her what she thinks about all this. I remember back in the early 80's when the Epstein Barr virus was coming out and she turned to me and told me she was worried about me getting it because I pushed myself too hard. I'd love to play one more game of cards with her or go shopping again.

May 12th is National CFS/FM Awareness Day. There's a lot that needs to be done in the way of awareness, research, and eliminating stigma. This is a devastating disease with many, many people suffering.

Sunday, May 4, 2008

Will this ever end?

I've felt like shit since yesterday evening. Sorry for the harsh language but I'm sick of this. I don't know what's happening with my body.

I feel achy in my arms, shoulders, neck, my glands hurt, my head hurts, the fatigue and weakness are kind of bad and I'm irritable. Last night I felt sick to my stomach at times, dizzy, lightheaded. I also get this weird chest-like pressure sensation. It's not exactly pressure in my chest which would be alarming but again, difficult to describe.

It feels like some sort of herx reaction. I don't think it's from the herbs because I finished those on Thursday. I am wondering if it's a reaction to the Resveratol. Either it's a herx or this is how the illness is presenting itself now. I'll be glad when I can talk to the doctor on the 16th. I have acupuncture on Weds thank goodness.

My mind just doesn't work like it used to. I can't write like I used to and I find that frustrating. I'm unable to really express myself. It's unbelievable to me that my committee wanted me to publish my dissertation and begin to write for journals. It's aggravating. At least if I had my mind and could feel a sense of being able to communicate what I need/want to.

I'm getting better at giving myself shots. The past 2 days there's been a leftover big red spot where the shot was. I think it's from the b12 dye or something. Today there was no red mark.

I'm hoping tomorrow will be a better day.

Saturday, May 3, 2008

The Post Office

I've been selling some of my used books through amazon.com (redhummingbird). It's been fun. I love books. I love the weight of them, the book covers that shows the glimpse of the promise of a good story within. My classmates in grad school would say I have an addiction to them. They often joked about the number of books I would buy each month.

It gives me a sense of small joy to put a book in the mail as soon as I get notified that someone has ordered a book from me. I wonder if the buyer has that same sense of anticipation that I get when I order a book. Sometimes I pay a little extra so the buyer will get the book sooner. One woman ordered a book on grief. I payed extra so she would get the book priority mail.

So today I walked to the post office to put a book in the mail. I have to do this at the post office so they can weigh the book in order to determine the correct postage. Before I left I carefully counted out what I thought was $2.75 which I figured would cover the cost of shipping. I considered my energy level and whether or not I was lightheaded or not. A couple weeks ago I arrived at the post office and thought I was going to pass out. That freaked me out.

I get up to the counter. The postmaster weighs the package and tells me the cost-$2.13. I take out my money feeling good that I'd come close to estimating the correct postage. Unfortunately even though I'd calculated correctly I didn't count correctly. Instead of $2.75 worth of quarters I'd only brought $1.75. This was a little emotional for me because each time something like this happens I get reminded how much this illness has affected me cognitively. I sheepishly told the postmaster that I didn't have enough money. I felt about 8 years old. He said but it' s only $2.13. I said "I know. I, um only have $1.75." From behind me comes a cheerful offer "how much do you need?" I turn around with relief since I didn't know if I would have had to return home with my unmailed package. For most people this would mean a simple return later on to the post office. I didn't know if I would have the energy to return. I turn around and there is this very kind looking woman with a strange hat on holding out a 1 dollar bill. I felt like crying. I thanked her profusely. She said oh, don't worry, it will come back to me somehow. I blathered on about feeling relieved at having to not make a returned trip. She casually replied, "oh, I know how difficult it can be to get to the post office." She has no idea.

This simple gesture really moved me and I could not hold back the tears as I walked the 2 blocks home. So thank you whomoever you are. Many blessings and much peace to you.

I get home and to find a very important piece of mail had arrived. It was the letter from the doctor that Roche needs in order to process my application for medication assistance. So on Monday I'll have the application faxed to Roche and then put the originals in the mail.

I dreamt last night that I accepted a job offer from an old agency I used to work at. I was so grateful to have some work. It paid only $10/hour but I didn't care. My entire work life has been dedicated to helping people. It's something that gives me a sense of purpose and joy. It hasn't been easy but it's been my calling. It felt great in my dream to be re-engaged in that.

I also dreamt about my echocardiogram. I dreamt there were 2 jets. One was minor but the other was more major indicating more serious heart damage. In real life, the echocardiogram showed a tricuspid valve regurgitation indicated by a small jet of color on the screen-it was interpreted by the cardiologist as a common abnormality. However, in cfids it's not normal. The doctor I saw who specializes in this stuff said that a "good cardiologist" would have caught this and explored it further.

I need to research how successful valcyte is in treating heart dysfunction associated with this illness. If it is then my decision is made. I think my decision is made already anyways. I think I need to try it. It's a very rough road-no different than chemo. The alternative though....I'm the type of person that has to take action. I can't just sit and wait. And the truth is that I'm getting no better by resting.

Friday, May 2, 2008

Can't think of a title

I finished the herbs prescribed by my acupuncturist yesterday. They were supposed to be antiviral but they didn't affect me like Olive Leaf Extract did. With OLE I felt a definite herx after 5 days-very fluish, muscle aches, etc... With these herbs I just felt very tired, some mood disturbance or what I like to call bio-emo. It's hard to tell what is the herbs or my new supplements.

Anyway, today I was extremely fatigued. It's hard to describe but I think I felt weak. I got a little worried even as I was laying on the couch.

I've also been having a lot of shoulder ache/pain for the past 4 weeks now. I can put up with a lot of pain but combined with the fatigue it's a bit wearing.

I'm still thinking about valcyte. It's hard to know if it's the right thing to do. I'll be glad when Dr. Montoya presents findings from his study.

I started methylcobalamin injections 4 days ago. Methylcobalamin is a form of B12 that helps with neurological issues. I actually have been injecting myself! Who would have known. The first time was the most difficult. I haven't noticed a difference yet.

I'm also doing mitochondria treatment that I started at my doctor's recommendation on April 19th: 200mg coQ10 twice daily, 500mg acetyl-l-carnitini 3 times daily, resveretal 15mg 3 times daily, and d-ribose 5grams 3 times daily. He said I probably won't notice anything for about one month.

I also started 2.5mg hydrocortisone twice daily on 4/19. It seems to help with the dizziness so it appears like I do have POTS (postural orthostatic tachycardia syndrome). For information regarding POTS a good website is potsplace.com. Another name for POTS is Dysautonomia which is a dysregulation of the autonomic nervous system. This can happen with cfs. I don't consider this to be my primary diagnosis but secondary due to the viral infection. Luckily I've responded to treatment. Feeling dizzy most of the time is not fun.

Today was a hard day. Those thoughts that I'll never get better haunted me but now that it's evening I'm feeling a little better.

I never thought I would be facing an illness like this. Cancer maybe because of my family history but not this. I've been trying to understand why this happened. What did I do. Was it certain health choices I made, was it because I never ate healthy, or I pushed myself, or that I was a very driven person....etc...Whenever these thoughts start taking over I have to slow myself down from self-blame and remember the words the doctor told me when I was diagnosed. He said: "it was nothing you did, this wasn't your fault, it would have happened no matter what." Sometimes I think I try and find the reason why because if I could figure out why it happened then I could figure out how to fix it. It gives me some illusion of control.

As it is now, I don't know what my energy level or weakness or lightheadness or muscle aches, or whatever other symptom decides to show up that day will be present. I can't count on whether or not I'll be able to walk the 2 blocks to the post office to mail my books. I don't know what I'll be able to accomplish on any given day. And sometimes my heart breaks with grief at how my life has changed. And more often than not my heart breaks at how much this affects my sweetie. This illness is not for the faint of heart.

I find it even more strange to remember that I was finishing writing my dissertation just 18 months ago.

I do love spring/summer and enjoy seeing the flowers blooming. I also love hearing the birds sing in the morning. I also love it when my kitty snuggles up to me early in the morning and puts her nose against mine. Life is really about moments. This feels like a weird, rambling post but that's okay.

Thursday, May 1, 2008

To treat with Valcyte or Not?

I thought I would start a blog to write down my experiences and attempts to heal from this illness. Let me start by saying that I don't know a lot yet. I'm a baby in this illness. I've only known about it since November, 07. Actually, that would be November 2nd, exactly.

I remember what the doctor said. He is a very kind, very well respected top notched rheumatologost in the San Francisco Bay Area. After reading a carefully prepared list of symptoms and family history he came into the exam room and said "I think what you have is viral." Oh, thank goodness, I thought-it's just viral. But he continued, "You have a very serious, debilitating medical illness in which there is no known cause or cure." Huh? How can a virus be serious. He must have seen my look of confusion so he said, "it's like HIV or Hepatitus C-along those lines of a virus. Except you don't have either of those." I'm still confused. I asked about treatment. He said there is no treatment but that I should look into clinical trials. Something must have started sinking in at some level because I asked the doctor what my quality of life would be like. I remember the room got very still. He looked me in the eye and quietly said, "I don't know." Now that got my attention.

My symptoms had started over the summer and by December I could no longer work. I had a host of symptoms: dizziness, extreme fatigue, a weird wired, tired feeling, I felt faint at times, my cognitive abilities declined-I had trouble with my memory, word finding problems, and other disturbing symptoms. I lost weight. I was so certain I had cancer that hearing I had a virus was a relief. I had no idea what I was in for.

I continued to see my HMO's primary care physician. A doctor who was mediocre at best. His solution for me was to prescribe stimulants. Then antidepressants that had a stimulating effect: Prozac and Wellbutrin. I couldn't tolerate the Wellbutrin. I had trouble sleeping, had an increase in anxiety, and had an increase in heart palpitations. My doctor wasn't happy that I stopped the Wellbutrin. It's hard for doctor's who don't understand this illness. They get frustrated by their powerlessness over their inability to cure. It's still no excuse for the way some patients get treated.

I've also been doing twice monthly acupuncture since Sept. It has helped my anxiety and sleep. It's too soon to tell about anything else yet. I think my acupuncturist is wonderful.

After little progress I decided to see someone who specializes in chronic illness including cfs. I'm glad I did. He told me my cells aren't able to process oxygen very well and that my heart is affected by the virus as well. I have high titers to HHV-6 and EBV. He said my illness is profound and that it's time to throw everything at it and recommended valcyte.

My insurance won't pay for it and the cost is over $2000 per month and I would need at least 6 months of treatment so at the recommendation of my doctor I applied for patient assistance through Roche Pharmaceuticals.

I have been on the fence about being on valcyte. I have heard some stories of people getting worse. Mostly though it seems that for people who have a viral onset, a majority of people have at least some improvement. My new doctor seems to believe I'm in the subset of me/cfs/cfids patients that will respond to valcyte.

When I look at my quality of life I think how can I not try it. I'm basically housebound. My big activity for the week is a visit to the local library or maybe a quick trip to Old Navy or a quick trip to the grocery store. I can't do much. I can do some household chores. I've been in denial about how bad it is.