Friday, August 28, 2009

Volunteers Needed for Study-Can earn $50.00!

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@ 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
Ph: (801) 587-4741
Mobile: (801) 949-1321
Fax: (801) 585-0900
Email: kathleen.oconnor@ hci.utah. edu

Thursday, August 27, 2009

Bad Day

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

Tuesday, August 25, 2009

Article on C3a and C4a

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

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,

Saturday, August 22, 2009

Stopping Valcyte

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.

Wednesday, August 19, 2009

Another Doctor Visit

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, August 14, 2009


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-

Friday, August 7, 2009


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.

Wednesday, August 5, 2009


"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)

In peace and Wellness-

Tuesday, August 4, 2009

Is It The Flu or a Crash?

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.

Monday, August 3, 2009

Slices of Heaven

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-