blog Wormwood

Update/Antidepressant rant

2012-01-12T00:46:00.000-08:00

It's been three months since my last post.

Since then I went off the sublingual GcMAF and started MAF 314, which is the GcMAF yogurt.

I took my first dose on Halloween, I don't think I've missed a day. Since then I've felt better, I've felt worse, I've felt better, I've felt worse.

I thought for awhile my skin looked better but now I'm not so sure. I think my tongue looks healthier.

I think my digestion is better. Lately I've even tried eating chicken and fish again. I stopped eating meat regularly then totally a couple years ago because I didn't have enough energy to digest it. Every time I ate meat I'd end up feeling woozy, then quickly falling into a thick, dreamy sleep with my stomach churning, and I'd wake up suddenly two hours later.

I'm hoping if I can eat meat more often I might have a little more energy. I've been eating eggs for protein but I think this will be better.

While I was in Ohio for Christmas, I got called for jury duty in California. This happend a few years ago. I went to my old internist, Dr. M, who's office is just a 5 minute drive. He was happy to write my medical excuse even though I hadn't been to his office in a few years. Unfortunately when I asked him this time he said he didn't feel comfortable writing it since he hasn't seen me since. Which is understandable. But also so backward. I haven't been in to see him because it's not worth the effort. There hasn't been a cure for CFS in the last two years. He can't think I'm all better now?

So I called my "new internist", Dr. G. I switched to her because I felt Dr. M didn't really get CFS. On my first visit Dr. G made me feel like she really got it and I remember thinking she didn't say any of the typical wrong things. But on subsequent visits she did. And now going to her is worse than going to Dr. M, just a slightly longer drive.

Dr. M couldn't see me until next month, but Dr. G's office said it was a $25 charge for jury duty forms and I could come in anytime the next day. I considered driving myself but decided pretty quickly I shouldn't try. I thought about asking someone but before I could think too much Jim offered to drive me during his lunch break.

Jim never made it back to work. It took a long time to see the doctor.

She comes in with my chart. "So how are you doing? Are you back at USC?"

"No, I haven't been for years"

"So what are you doing are you working?"

"No"

"So...what are you doing?"

"Nothing"

It's not an easy thing to say, that you are doing nothing, but it's the truth. And I am angry, because even though I haven't seen her in a year, she has my chart, she recognized me in the waiting room, she knows I have CFS, but she still doesn't get how bad it is.

It reminds me of a scene Dorothy Wall wrote about. She went to see her doctor for something, a doctor she'd been to before. She was very sick with CFS. It was a huge effort for her to get to the appointment, to make it through the appointment. She tells the doctor about her symptoms and it seems like she is listening. And then when the appointment is over the doctor recommends some play she saw. "You should see it." And she says "Doctor, I have chronic fatigue syndrome, I don't go to plays."

I loved that line when I first read it. You tell her Dorothy! I like to imagine it made this big impact on the doctor. But I think if it had been me to say it the doctor would just roll her eyes behind my back and think "what a dramatic bitch."

Dr. G says "...and you were seeing some 'famous specialist?'"

I almost didn't know what she meant. But I told her yes, I was still seing Dr. Cheney and that lately I had tried GcMAF, and now was trying GcMAF in yogurt form. She didn't ask what GcMAF was, which was a relief.

She asked if I was on any antidepressants and I said no. I remembered she asked this last time. I told her I didn't have any interest in going on antidepressants.

"But you are so young, it's such a shame you...you should be out doing things..."

This is true, I think. It is a shame. It is a major shame. But please, please don't say it like that. It sounds like you are saying it is my fault. Like this is my choice. And I have tried so much. I've tried almost everything. I hate that she says this.

A neurologist specializing in sleep disorders said something similar to me once. First, she said she couldn't do a test on me because I was sleeping too much during the day and not enough at night and they didn't run the sleep clinic during the day. Then she said "Chronic fatigue is a syndrome, it's not a disease." She said something about how it can be corrected by things like changing your sleeping pattern and when she saw I was geting upset she said "You are a young girl. Pretty girl! Smart! Good Height. There is no need for this." Then I cried some more because I came all this way, she had been recommended so highly, and how could she help me if she thought that this fatigue was just some behavior pattern I'd adopted because I had low self esteem? Also I cried because I was sleep deprived and for me it was like the middle of the night.

Today I tried to sum up again for Dr. G how I have already tried six or seven antidepressants over five years and all that time I just got worse. Some of them made me sleep more. Some of them didn't make me sleep more. Some of them made me a little happier when I was awake. But none of them helped with my real problems, that I was tired all the time and needed to sleep 12-17 hours a day. And that I couldn't concentrate anymore. That I couldn't do math or write papers anymore. No antidepressant ever helped with that.

But she still said I should try the new SNRI's like Cymbalta. I said I just didn't see the point of going through that again. I'd never heard anything about Cymbalta helping with post-exertional malaise or anything.

Oddly enough, I looked up Cymbalta in Wikipedia tonight just before I wrote this and it said

"As of January 11, 2007, Eli Lilly is currently enrolling patients for double blind Phase II and Phase III trials of Cymbalta for the use of chronic fatigue syndrome (CFS) in conjunction with the University of Cincinnati.^[28] "

Funny coincidence. Maybe if I were living in Ohio I could be a part of that trial. Make myself useful. But then I'd probably have to go off the MAF 314 or something.

I also found out that Effexor, which I started my first year of college, is an SNRI. It got me through my first semester but one week into the second semester and I couldn't get out of bed. Definitely post-exertional malaise, in hindsight. That's when they took me off Effexor and put me on Adderall. "Just to keep me awake"

But my doctors kept telling me I should keep trying antidepressants until I found the right one. So I did. Before I started my first semester at USC I started Lexapro. (I think it was Lexapro) On Lexapro I was sleeping 17 hours a day. I was missing so much school it looked like I was going to have to drop out (and I did) but I was determined to listen to my doctor and stay on this medicine. My best friend, who was also my roommate then, was mad at me. When I told her I was on Lexapro she said she'd been on it too, it did the same thing to her, and I shouldn't waste time on it, I should just get off it. I should have listened to her, but then what would I tell my doctor? He was telling me to stay on it. He said sometimes it has side effects like this at first but they go away.

I think I stayed on it two or three months before I gave up. As soon as I got off it my sleeping went back to normal. (12 hours a day) But it was too late.

I took a few months off and then I went back on Prozac. I'd taken it for for six months when I was eighteen and I thought it was the one that had worked best. In retrospect, the fact that I felt better at this time probably had nothing to do with which drug I was on. I was already out of school and I stopped taking it before I started working. So I had a lot less stress and I could sleep as long as I needed, and I did. Also, I was younger and healthier and hadn't been sick as long.

When I tried Prozac again four years later it didn't do anything. Same when I combined it with Wellbutrin and Adderall and whatever they threw at me.

I haven't tried anymore since then. And I just don't have any interest.

Other things Dr. G said that annoyed me.

"When you go to the specialist, do you see that all the patients are women?"

"Well he only sees one patient a day so I've never seen..."

"Because most of the people with Chronic Fatigue Syndrome are young women your age."

I wish I had said "Why are you telling me this?" But instead I just said that a lot of the patients I see on the message board were men. I wish I hadn't said "message board" because as soon as I said that she cut me off. I didn't even mean message board like, normal internet message boards, I was actually referring to the Yahoo Group just for Cheney patients but I didn't make that clear.

So I never found out where she was going with that.

When trying to talk me into SNRI's she said "You have to run and jump and dance and..." and I cut her off and said "No, actually, exercise makes me worse" and Jim, who was setting next to me all this time, chimed in to agree.

"Well I just said jump and dance to mean you have to try everything."

I wanted to say "But I have tried everything"

Poor doctors, up late at night, pacing around their offices, thinking "What can you prescribe to the patient who's tried everything?"

And for the record I did try jumping, and dancing. They didn't help and probably made me worse.

In the end though she signed the form and I am excused from jury duty for one year. I asked if she could make it longer since there was no reason to expect I'd be better in a year. But she said that was as long as she could make it for unless the patient is over 80.

I wondered if I could find another local doctor before the next year so I wouldn't have to come back. One who understands and won't put me through this. But I think the chances are really, really small.

GcMAF update/VDR/Voices from the Shadows/New Name

2011-10-12T16:15:00.000-07:00

I have been on GcMAF for 5 months now, and I'm sorry to report I've had no improvement.

I am pretty much the same as I was in May: mostly housebound. I can't shop. I can't cook. I can't clean out my closet.

I can't seem to go out more than once a week, if that. When I tried last week I had a major crash, which I am still experiencing, or maybe just starting to coming out of. Two days ago I was too tired to get out of bed or to talk the entire day. Jim came over and sat on the bed and I just tapped his hand with my finger to let him know I could hear him. Most of the time it is not that bad, but it happens. Yesterday I could talk a little more. Today I'm sitting up on the couch.

I took my last dose of GcMAF this morning. I've been taking it sublingually every 5-7 days. I ordered it from BGLI in The Netherlands. When they were no longer shipping to the US my parents flew to Amsterdam and got some for me because I wanted to stick with it at least 5 months. I got an email from them today saying they have resumed shipping to the US. But I don't think I'll be ordering any more.

On the other hand, here is a video I saw today posted by Dr. Enlander. His GcMAF trial, as I understand it, involves weekly injections of GcMAF not from BGLI but from a different source. This is just one patient, not sure of what is overall results are, if anyone does please let me know, but this one patient seems to have made a remarkable, and enviable, recovery.

This video makes me want to take the next flight to New York and see if Dr. Enlander is taking more patients for GcMAF. But I already have travel plans. Next week I'll be back in Asheville for Dr. Cheney's and Dr. Ruggerio's MAF 14 yogurt making clinic.

I'm not exactly looking forward to it. It's a long flight by myself, followed by a long drive. My dad is meeting me at the airport and taking the clinic with me. It's three days long. I don't know how I'm going to manage. My dad can go in my place but I'm the one who is going to have to come back home and teach it to Amy so she can make it for me.

I'd love to go to Florida while I'm back east and visit my best friend. She might be able to make the ten hour drive to Asheville to pick me up. Then I can visit for a few days or a week and fly back to LA. I'd like to check out St. Pete's white sand beaches, go to some restaurants, maybe the Dali museum, but chances are I will not be up for anything but sitting around the apartment.

I'm not expecting much from the yogurt. There's so many blood tests I have to take before I start it. The kits just arrived today, one of the kits. There's more to come. I have a good feeling they won't all be here before I leave. Cheney's office seems to be going through a lot of staff changes and in the meantime I haven't gotten a test result in months. I still don't know whether or not my nagalase has gone down, or the results of my last two calcitriol checks.

And...as I was writing this I just got an email about my VDR type: Bb Ff. It means I should be a good responder. Oh well.

I keep stressing myself out over these longshots. And I guess I haven't had enough yet.

There's a new documentary out called Voices from the Shadows. It's available for streaming on the Mill Valley Film Festival website until October 30th here. I highly recommend it. At first because of the music and the style, I was a worried it was going to be like a super long, maudlin YouTube video. But it's not. It's message is substantial and the stories are so important. It tackles what I think is the most important issue with this disease, the psychiatrists trying to hijack it.

All of the patients interviewed live in the UK. Six years ago, the first time I dropped all my classes midsemester, I had still never heard of CFS or ME. I was sleeping excessively and when I did get up and go to classes I was so tired I couldn't believe it. My only diagnosis was still depression. In an IM conversation, a friend in Europe said, "You've got to go to London, find out what's really wrong with you." I just laughed it off. It's not like I lived in a third world country. I'd been to the Cleveland Clinic, for gods sake. If they couldn't find what was wrong with me I don't know why anyone in London could.

If I actually had gone to London, I might have gotten an ME diagnosis. But who knows what kind of doctor I would have seen. One who believed it was biological, or one who believed it was psychosomatic?

The last part of the film is particularly disturbing. A woman with very severe ME is being committed to a mental hospital. (There they call it being "sectioned.") She is bedbound. Has day night reversal. She's sensitive to light. She'd only recently regained the ability to speak. I can barely imagine the constant pain she must have been in, just lying there, struggling to talk to defend herself, probably with her eyes closed. She pleads with the doctors and the policemen who have come to forcibly remove her, telling them she has ME, and she's afraid the treatment they want to give her will make her worse. But they don't listen.

Finally, I've been meaning to comment on the comments from the Wall Street Journal article by Amy Dockser Marcus last month. It's called "Wave of New Disabilities Swamps School Budgets" and the main disability she focuses on is CFS. It was featured on the front page I think. You need to have a subscription to read it and view the comments. My dad let me log in as him so I could read them, I heard they were pretty vicious.

The article focuses on one high schooler with CFS. Her story might have been mine, if I had been correctly diagnosed in high school. She keeps trying to stay in school, the school keeps trying to accommodate her, but she keeps getting worse, acquiring more accommodations.

Not surprisingly, for a lot of people this article was the first time they'd heard of Chronic Fatigue Syndrome. And, also not surprisingly, they all thought it was bullshit.

"I used to suffer from "chronic fatigue" while in high school! Fortunately it usually went away as soon as the final bell rang."

"So being lazy is now a medical condition? This is absurd and a huge waste of money."

I can't help but think that a lot of these commenters wouldn't have been so bold if the disease had a different name.

I've never liked the name Chronic Fatigue Syndrome because of the reactions I've gotten when I say I have it. "Oh I think I have that too" "Oh my mom has that but I think it's just depression" But I didn't know a better name for it, so I kind of got used to it. After all, it did describe at least part of what I was going through.

All these comments really opened my eyes. I'm not saying I have CFS anymore. Everyone who's been saying this name is absurd and needs to be changed, I am now completely on your side. Just tell me whose house to pitch a tent in front of.

Here is my own personal selection of comments which I call "I, who never went to medical school"

"I think I just got Taxpayer Fatigue Syndrome."

"Adolescents and teens? We can never discount "don't want to do it" syndrome."

"I have Sympathy Deficit Disorder."

"I remember a lot of kids that suffered from CFS when I was in high school back in the 1990s, but back then they were called "potheads" and "burnouts." I wonder what time this girl gets to bed at night."

"Made-up diseases: Chronic fatigue syndrome, learning disability, and marginal personality disorder.

Whatever happened to words like lazy, stupid, and jerk?"

"Call me heartless, but I'm not buying that "chronic fatigue syndrome" is a real disease, much less a disability. The people I know with "CFS" have been people I've known to be drama queens their entire lives, always taking the max. sick leave or simply not working and living off their spouse and making themselves the center of sympathetic attention whenever and wherever they could in order to never have to do any work nor think about anyone else."

"Chronic Fatigue Syndrome (CFS) & Attention Deficit Disorder (ADD) - Two made up diseases that I never heard of during my childhood! Then they were known by the more simpler terms "Always Lazy" and "Poor in Academics"..."

"I, who never went to a medical school will tell you, that fatigue syndrome is linked to improper diet and toxicity in the human body. How one can solve it, very simple; change diet, fast, exercise, especially jogging. There are good self help books, but one has to find them. More important it is free, and sets you on the path of self reliance."

"After reading the article,I had to go back and do a double-take to make sure I wasn't reading The Onion.

"There is no diagnostic or blood test, no known cause or cure. Patients are diagnosed based on a pattern of self-reported symptoms—which tend to flare and then subside."

What nonsense."

"Here's the bottom line from a physician of 21 years;

Chronic Fatigue syndrome is a bunch of cr@p. The people who "have it" will defend it till the end, to be validated as "sick human beings" and of course to get disability.

Fibromyalgia is a bunch of cr@p. But it is good for us doctors because it is codeword for "this is a crazy patient".

NPR FTW!

2011-09-08T15:08:00.001-07:00

So much going on, I completely missed NPR's Morning Edition segment on Chronic Fatigue Syndrome Monday.

I heard about it over the weekend, and was a little worried it was going to be about what was going on in the UK with and ridiculous "Death Threats for Scientists" thing.

But actually it was pretty much all I could have hoped for; the news item I've been waiting for.

It's almost five minutes long, not just a blurb.

It talks about the day to day reality of being bedfast and housebound. The frustration with uninformed doctors. A soundbite from Anthony Komaroff.

Over the years, researchers have identified various brain, immune system and energy metabolism irregularities. Komaroff points to a study done a couple of years ago by the Centers for Disease Control and Prevention. It showed that the majority of doctors now recognize chronic fatigue syndrome as an illness. Today, an estimated 1 million Americans are thought to have it.

But lots of regular folks are still doubters, at least in the experience of Cynthia Johnson of Lake Oswego, Oregon. She says the disbelief makes the disease worse. Johnson is a breast cancer survivor but in October 2009, she was hit with a bad flu that hasn't gone away.

Ms. CYNTHIA JOHNSON: People really admire you for fighting cancer, and they're very excited that you survived. They congratulate you for surviving. Nobody does that, day to day, for CFS. They are just like, oh.

And it ends:

The results of those two studies on whether there's an XMRV connection may be released at a meeting in Canada at the end of the month. Meanwhile, advocates for people with chronic fatigue syndrome are pushing for a name change, to make the syndrome sound like more than a description of someone who just needs a nap.

It's a rare thing with CFS stories, but I feel like these journalists actually really did their homework and were telling the real story. As best they could in five minutes.

Vendetta

2011-08-24T13:47:00.000-07:00

I feel like I've been hearing a lot about Simon Wessely lately. But I've kept my distance, emotionally. ME in the UK, I don't think I've ever quite grasped what it's like there.

But I read a quote in Nassim Marie Jafrey's blog from Simon Wessely today, and it's gotten me pretty worked up.

“Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times.”

Seriously? And this man is ostensibly baffled that people would find this offensive. I followed a link to its source at the ME association website.

Here is his main argument:

“I think finally, fundamentally, it is that they [PWC's] cannot stomach the thought that this might be a, quote, ‘psychiatric disorder’. By which they mean — not what I mean — ‘it’s imaginary’, ‘it doesn’t exist’, they are ‘malingerers’.”

So what does he mean by "psychiatric disorder?

“Psychiatric disorders are disorders of the brain but expressed in a way that you can’t see them. I think that schizophrenia is a psychiatric disorder, Alzheimer’s is a psychiatric disorder, OCD [obsessive compulsive disorder] and autism are psychiatric disorders. Why is Alzheimer’s listed as a psychiatric disorder? Well, largely because it is treated by a psychiatrist.”

And this is where he loses me. What does he mean by, can't see them? They don't show up in MRI's? There's no blood test for them?

Yet?

Does he honestly believe that the causes of these diseases cannot and never will be seen? Never mind there is already significant evidence for a viral cause of schizophrenia.

What does he think CFS is? "Somatisation par excellence"? The delusion of fatigue? When there is so much scientific evidence against that?

Wessely thinks all his problems stem from the stigmatization of psychiatry. A stigmatization that shouldn't exist but sadly does. People with CFS turn their noses up at psychiatry. They naively demand the search for "biological" causes. People with CFS aren't crazy, but they are in far greater need of therapy than medicine. If they would just understand that mind/body - it's all the same thing! Thus follows, therapy/medicine - same thing!

So why even make a distinction between psychiatry and medicine, other than so psychiatrists can keep their jobs?

Actually he does see it that way:

“Obviously I’m of the view that we should treat these disorders equally, which is, I think, getting rid of the distinction between neurology and psychiatry.”

What? OK, all you psychiatrists, congratulations! You're all neurologists now! All you in your private offices, seeing patients on couches, prescribing anti-depressants one after another in no particular order until you find "the one that works", call yourselves neurologists now! Publish a completely biased and unscientific study about how GET and CBT cure ME, and send it into the American Academy of Neurology for publication. Go try that!

I'm getting out of my depth now, but I have to say, the only way CFS/ME is a "metaphor for our times" is if you use it someway as a metaphor for our times in a novel or a movie. Here in the real world, it's just an illness. Maybe caused by a virus, maybe by something else, but whatever the cause, it can, and will be seen.

I think my feelings right now about psychiatry are best summed up by this great scene from Frasier:

It starts at 12:30 and is only a minute or so:

*Update - A good summary of Wessely's behavior in this letter from Malcolm Hooper

You know it's a good day when...

2011-08-04T19:13:00.000-07:00

I am very lucky today because:

1) I drove myself to get my haircut. Made possibly because I finally decided to stop driving all the way across town and go to a salon down the street.

2) I was reading online about ways to cool your apartment without air conditioning. One of my problems is I can open my windows but I never get a breeze. Then I read that you can create a breeze through the "chimney effect" by opening the highest and lowest windows in the building.

My apartment is the second floor of a duplex. I open the front door, walk up some stairs, and my whole apartment is on the second floor. So my lowest window was actually the front door. I got up and went down the stairs, opened it, and came back up. My highest window is a skylight that was put in for roof access. Below it is a bookshelf/staircase with very narrow steps. I had to climb them, and push very hard to lift the window up, and climb back down.

What's great is not just that I was able to do it, but that I knew as I was sitting there reading that I would be able to do it. Most days I am so tired and my body feels so heavy; I would read it and think, "That's nice, I'll ask Jim to do it when he comes over." Most days I sit on the sofa and decide if I want to stand up and walk across the room to turn the fan on.

I'm tired now. If you asked me to get up and do it again, I would be able to do it, but I'd have to think about it. And I'd probably decide I'd have enough for the day and should just rest.

Which is what I'll do now. Hello Satie Pandora station...

3) I was able to write this.

10 weeks

2011-07-28T17:20:00.000-07:00

I've just finished my 10th week on GcMAF. I'm afraid I don't have much to report. As of June 22 my Calitrol was at 47.7, up from 33 where it hovered before I started. It's a significant rise, and it means my body isn't just ignoring the GcMAF, so that's good. I had it retested a week ago. I guess I want it to stay elevated, but not get too high. That could be bad.

As of June 24th there's been virtually no drop in my Nagalase: it went from 2.2 to 2.0. I haven't had another test since. Maybe I should ask for one.

I started MTF last week. Some other patients reported feeling immediate changes when they put it on, (it's like a cream you rub into your arm) either jitteriness or more energy, but I don't feel anything.

It seems like this summer is progressing and my health is declining at the same rate as it would if I'd never started GcMAF or MTF.

My VDR phenotype results which are supposed to predict GcMAF response were finally sent to the lab, but it will be another month before I find out what they are. At this point I don't really care.

BGLI, my GcMAF source, has, for the time being, stopped shipping to the US and Canada. Even though I haven't felt any changes yet, and it's not too early, it's also not too late, and I didn't want to stop my treatment halfway. So as I write this my parents are in Amsterdam, a trip they took with the specific purpose of bringing back a three months supply of GcMAF for me from BGLI. I'm determined to do the whole six months.

Then there's the other GcMAF, the bovine kind made with yogurt. It's supposed to be helpful for digestion, which God knows I need help with. 20 or so Cheney patients are starting a trial of it sometime in the next two weeks. One of them read this blog and contacted me, so I'll be able to find out how he's doing. And supposedly after the trial this will be available for all patients to buy, I think.

It's not easy, but I am still determined to believe that any treatment could be the one that makes a difference.

Meanwhile I have not done much this summer. It would have been awesome if I could have gone with my parents to Amsterdam myself, but even though technically I'm sure I could survive the flight, the stress would do a big number on me, on my body, and it would just be a miserable experience. Anyway, I've already been to Amsterdam. It was kind of a side trip when my friend and I were traveling around Germany. I think it was supposed to be just two days, but we decided to stay another because I spent the entire second day asleep. It was the second time on a vacation where a friend, who normally was tolerant of my long sleeps, suddenly got angry at me for it. Because now we're in Amsterdam. "I understand if you want to sleep all day in Ohio, or sleep through college, but not when there's fun stuff to do." Both times it was a disturbing surprise to find out these friends thought I slept all the time because I had nothing better to do. Like I was making some kind of statement. Hadn't I made it clear this sleep thing was beyond my power and my understanding? Apparently not. Probably my pride got in the way.

Been watching a lot of movies. Almost seen all the AFI 100. Latch-hooked my way more than halfway through a welcome mat. Been making Spotify playlists. Most days now I am not able to read. So, I'll be keeping up my Audible and Netflix accounts. Wish I could do something more.

GcMAF/Nagalase/Calcitriol

2011-06-11T12:26:00.000-07:00

I've been on GcMAF 30 days now and I'm starting to worry I might be a non-responder. I should probably wait at least another three weeks before I let myself get too concerned, but I can't really help it.

I have to say that it's been a good 30 days, relatively speaking. I still have good days and bad days, but the bad days haven't been as bad, and the good days have been a little better. It's been a little easier to fall asleep at night, and easier to get up in the morning. I really felt better. I didn't know my test results yet, if my Calcitriol levels were rising, indicating the GcMAF was active, or if I had the right VDR polymorphism.

Someone in Europe, I don't know if it was Kenny De Meirleir or BGLI or what, had said that only 5% of the population had the bad VDR type that didn't respond to GcMAF. Recently Dr. Cheney said that among his patients it was more like 50%. I won't know my VDR test results for at least another three weeks.

I haven't gotten the results in the mail yet, but I found out over the phone that my Calcitriol has not gone up, in fact it's gone down a little. But, when I took the test, I had only been on GcMAF for two weeks and had only had 3 doses of 20ng each. It won't be for another two weeks that I get up to the full 100ng dose. So I'm hoping that that has something to do with it.

Nagalase

Dr. Cheney suggested I do another nagalase test to see if that has at least gone down. The results from my first test came, and I've got it. My level was 2.2. The normal/healthy range is 0.32-0.95. So I am not normal or healthy. There isn't a lot on the internet about nagalase, but as far as I understand, it's only seen in cancer, HIV, and certain autoimmune diseases. I looked at a chart in one of Dr. Yamamoto's papers, and found that his HIV patients nagalase levels ranged from 3.06 to 5.58. The healthy control was .23. The goal of the GcMAF therapy is to get the nagalase down to zero.

As for XMRV, as far as I can tell, everyone in the retrovirology world seems to agree with John Coffin that XMRV is a recombinant virus, and a lab contaminant that does not infect humans. On the other hand, I got an email recently from a patient who saw Dr. Cheney in May and he still wanted her to get an XMRV test from VIP. I guess that's all I'm going to say about that, because retrovirology is pretty much impossible for me to understand. All I know is that something in me is making nagalase.

My next calcitriol test is in a little less than two weeks, but even by then I still won't have been up to full dose. Still, I'm hoping it shoots up.

I still have not experienced any GcMAF side effects, like the IRIS effects, flu-like symptoms that last anywhere from 2 days to two weeks.

If I'm not responding to GcMAF, and the good days I've had this month are just a coincidence, or a product of hope, there are two possibilities. One of course is I have the bad VDR mutation. If I don't though, I'm worried that my bad digestion could be the cause. And since gut health is so important to the immune system, maybe I'm screwed.

There might be a study conducted with Dr. Cheney's patients and a Dr. Ruggiero from Italy. He makes a product that combines GcMAF with a raw milk colostrum. It's supposed to be good for gut issues. Maybe if I am not responding to GcMAF this way I will be able to get in on that study, but I don't know, it's a pretty small one.

If GcMAF works for me, and it has for many with CFS, it could make such a difference in my life. Maybe I could go back to college. Maybe I could work. Maybe I could go grocery shopping and cook for myself again. I would love to take dance lessons with my boyfriend. But if things stay as they are, I have to spend most days sitting on the couch. Or if I am up to it, I can sit on someone else's couch, or on a couch at a party. Or even in the passenger seat of a car for a weekend roadtrip.

What I really need is to do some real clothes shopping. I'm sure that's the most energetically demanding chore of a person's life. Walking around to different stores, trying a bunch of different things on. That's the only way I know to maintain a decent wardrobe. I've been shopping a little, in spurts, one, maybe two stores at a time, with my mom or boyfriend to carry things for me. But I have to be done in a half hour, 45 minutes. There's more pressure. I don't always buy the right things. And then my weight is always going up and down so much, so something I bought two weeks ago won't fit today.

There's got to be some workaround for the shopping thing. Maybe my own private tailor who makes house calls?

I don't even go out that much, but I do go out sometimes. And when I do...I get very self conscious about wearing four year old clothes that don't fit. And also, it matters very much what I wear just sitting around the house. It has to be comfy, but I can't stay in my pajamas all day or I'll have nothing to change into when it's time for bed.

Word Fog

2011-06-02T14:20:00.000-07:00

Pasting my url into Wordle is a lot easier than writing an actual blog:

"Wordle is a toy for generating 'word clouds' from text that you provide. The clouds give greater prominence to words that appear more frequently in the source text."

GcMAF

2011-05-02T14:10:00.000-07:00

(This post will be an exercise on and a lesson in limitations. I've been putting off writing it, waiting until I had enough energy to "make it a really good one" with links and quotes and everything. But I get it now that that's just not going to happen.)

I had my third appointment with Dr. Cheney in March. He is putting some patients on GcMAF now and I said I wanted to start. It was a long process of preliminary blood testing, most of the results I am still waiting for, but I finally got my order through and I think it is shipping today from The Netherlands. If there's no problem at customs it could be here this time next week.

I don't know if I'll be able to start taking it right away, or if I have to wait for more test results. Vitamin D levels are important. I know mine are usually very low. Two years ago my endocrinologist told me mine were the lowest in her practice.

Low vitamin D levels are associated with failure to respond to GcMAF. So I might need to supplement before I start.

With GcMAF there is an Immune Resuscitation Inflammatory Syndrome response, (IRIS) that could last a few days or two weeks. The lower your vitamin D levels, the worse it is, usually. That scares me a little. IRIS means flulike symptoms. The last time I had the flu was, well, scary and unbearable.

Dr. Cheney read me an excessively cheerful email from a patient who was having a positive reaction to GcMAF. I remember he said he was sleeping better and waking up refreshed and able to do much more during the day.

There are also two patients who didn't respond at all. And this makes sense, because they both have the "VDR haplotype polymorphism" which predicts failure to respond in patients with HIV. I've been tested for this but I don't know the results yet. If I have it, it will be crushing. But Dr. Cheney is not yet convinced it is a impossible to work around. He is giving them higher doses of GcMAF and thinks they might respond.

If you are wondering what GcMAF is, don't bother looking on Wikipedia. Until recently there was no entry. Now I think there is one sentence.

I'm just going to paraphrase/quote from Dr. Cheney's GcMAF Protocol and Consent Form, and we'll figure it out together:

GcMAF was discovered by Dr. Nobuto Yamamoto at Temple University in 1990. (The GcMAF wikipedia page sites Dr. Yamamoto's papers.) "He patented a method to semi-synthetially reproduce GcMAF in 1993, (now expired) and by 2002 began to conduct studies using this semi-synthetic derivative in both HIV and cancer patients."

What is GcMAF?

"GcMAF is a partially deglycosylated (?) vitamin D binding protein (DBP) also known as the Gc protein."

(?) So it's a "glycoprotein" with the sugar (glyco) taken off.

What the protein normally does, is bind and carry vitamin D, but in an immune response will be acted on by a specific enzyme that "deglycosylates" it, which changes it's function. So now, as GcMAF, it will "activate, regulate, and expand macrophages" Macrophages are a kind of white blood cell, "the central processing unit of the immune system and capable of modulating and controlling both the innate and cognate immune systems."

So basically, GcMAF is an important part of the immune response. Theoretically, some of my macrophages are not being activated, and they need to be.

NAGALASE

Nagalase, an enzyme also discovered by Yamamoto, destroys GcMAF, "with subsequent loss of effective imunologic function and potential dysregulation of the immune system ensues." Nagalase is found in "most patients with HIV and cancer as well as some autoimmune diseases"

When I was talking with Dr. Cheney, I got the impression that nagalase was actually produced by HIV and other retroviruses, but I can't find that written down. It does say that "Nagalase activity was found to be a better biomarker for clinical status of HIV infected patients than more traditional biomarkers such as the CD4 count."

I am being tested for nagalase activity, but I won't know the results for weeks. I do know that he's had a number of patients tested and they all came back positive.

The impression I got was, that even if XMRV turns out to be a lab contaminant (and I got the distinct impression he doesn't think it will) that nagalase activity in CFS patients points to a retroviral cause anyway.

If you've googled GcMAF, as I have, you'll probably end up looking at a copy of Dr. Yamamoto's 2009 paper Immunotherapy of HIV-infected patients with Gc protien-derived macrophage activating Factor (GcMAF) in the Journal of Medical Virology. Which "demonstrate(s) the utility of GcMAF in eradicating HIV in non-AIDS patients and even maintaining such eradication for years after GcMAF therapy was discontinued. In other words, his GcMAF therapy appears to be able to cure HIV in certain classes of patients and render the patient immune from HIV infection."

So why doesn't everyone know about this?

Apparently, Dr. Yamamoto is "reclusive and unapproachable." And ostensibly not a promising source of revenue. (Though the GcMAF I am ordering from BGLI is not cheap, but maybe it is by prescription drug standards. I don't know.)

More quotes from the protocol:

"His methods of patent in 1993 was inherently weak as GcMAF, as a natural substance, cannot itself be patented and no large commercial interest ever bought a license from Yamamoto to improve the rate and quality of GcMAF clinical studies and make high quality GcMAF widely available"

This is supposedly why we all have not heard of it.

"To make matters worse, there have emerged many GcMAF products, available on the internet from around the world, of questionable quality and efficacy...There are also some fairly severe though transient side effects in a few patients that need physician assistance and guidance to negotiate safely."

So, you know, don't try this at home, without help from your doctor.

And finally:

"...treatment with GcMAF does appear to be very promising and relatively safe for patients with disabling CFS and more than 100 CFS cases have been treated successfully in Europe by two separate groups in Belgium and The Netherlands. The non-response rate appears low and currently sits at about 5% and perhaps related to rare Vitamin D receptor polymorphisms..."

which I am being tested for, still awaiting the results.

(emphasis mine)

So based on GcMAF being a naturally occurring substance in the human body, and the fact that it's been studied since 2002, I am convinced it's safe enough to try. And I do have high hopes.

As for the whole stem cell thing, it looks like that's out. Dr. Neil Riordan, who runs the clinic in Panama I would have gone to, is now making something from stem cells, some kind of cream you can apply topically. It's called MTF. I had Dr. Cheney write down what that stands for but I can't really read it, but it looks like "Mesenchymal Trophic Factor".

It's something I'll be starting 18 weeks after I start GcMAF. He said he gave some to a relative with Parkinson's and that it really helped his tremors, and that he was able to cut the lawn on the riding mower for the first time in years or something. When we talked though it had only been a day or two and he didn't expect it to last, at least not without another application. I don't know how that turned out. I guess I can ask at my follow up visit in six months.

It's been a rough few months. And at the lowest times it's been the thought of the GcMAF that's kept me going. Did I mention my hopes are up?

Our Schizophrenic Cousins

2011-02-21T04:15:00.001-08:00

Pity the poor CFS sufferers and their doctors, alone in the world, toiling in obscurity, trying in vain to prove to the world that their disease is not mental but viral in origin. Or so I thought.

Three years ago, when I was still just learning about CFS as a biological illness, I read an article in a science magazine about a possible viral or bacterial cause for schizophrenia. “Of course!” I thought. So obvious! So elegant! This must be how people felt when The Origin of the Species was first published!

So I was surprised a few months ago when I saw an article in Discover Magazine about the "Schizophrenia virus controversy", What? Those stubborn psychiatrists just can't let go of their precious mental disease? Come on!

I read the first few paragraphs, but I was tired, and hadn't been able to do much reading lately. So I opened a tab for it in my browser and it sat there unread, for months. I finally just read it tonight and I am KICKING myself for it because it is the most mind blowing and informative story I've read all year.

Please read The Insanity Virus.

It turns out it's not just a virus or bacteria they're talking about. It's a retrovirus. An endogenous retrovirus. I don't know as much as I'd like to about virology, but I do know that endogenous retroviruses, ervs, are supposed to be harmless. The virus, HERV-W, is also implicated in MS and bipolar disorder.

Reading about this virus was eerily like reading about CFS, though, disappointingly, CFS and XMRV are never mentioned.

It is a very easy, very enlightening read. If you are not yet convinced of it's relevancy to your life, I have some quotes prepared that may change your mind. Basically I'm going to quote heavily from the article and comment on it.

1) The Birth Month effect leads to the suspicion of an infectious cause for Schizophrenia

Even more puzzling is the so-called birth-month effect: People born in winter or early spring are more likely than others to become schizophrenic later in life. It is a small increase, just 5 to 8 percent, but it is remarkably consistent, showing up in 250 studies. That same pattern is seen in people with bipolar disorder or multiple sclerosis.

"The birth-month effect is one of the most clearly established facts about schizophrenia," says Fuller Torrey, director of the Stanley Medical Research Institute in Chevy Chase, Maryland. "It's difficult to explain by genes, and it's certainly difficult to explain by bad mothers."

The facts of schizophrenia are so peculiar, in fact, that they have led Torrey and a growing number of other scientists to abandon the traditional explanations of the disease and embrace a startling alternative. Schizophrenia, they say, does not begin as a psychological disease. Schizophrenia begins with an infection.

(Italics mine. And by the way, I was born in February, my healthy siblings were born in August and late April.)

2) The virus

If Torrey is right, the culprit that triggers a lifetime of hallucinations—that tore apart the lives of writer Jack Kerouac, mathematician John Nash, and millions of others—is a virus that all of us carry in our bodies.

Emphasis mine, because if this is true, then it wouldn't matter if XMRV or whatever it's called is an erv.

We imagine viruses as mariners, sailing from person to person across oceans of saliva, snot, or semen—but Perron’s bug was a homebody. It lives permanently in the human body at the very deepest level: inside our DNA. After years slaving away in a biohazard lab, Perron realized that everyone already carried the virus that causes multiple sclerosis.

3) The following passages are about schizophrenia but you could easily start reading them and think they were about CFS:

Schizophrenics also showed signs of inflammation in their infection-fighting white blood cells. “If you look at the blood of people with schizophrenia,” Torrey says, “there are too many odd-looking lymphocytes, the kind that you find in mononucleosis.” And when he performed CAT scans on pairs of identical twins with and without the disease—including Steven and David Elmore—he saw that schizophrenics’ brains had less tissue and larger fluid-filled ventricles.

By the 1980s he began working with Robert Yolken, an infectious-diseases specialist at Johns Hopkins University in Baltimore, to search for a pathogen that could account for these symptoms. The two researchers found that schizophrenics often carried antibodies for toxoplasma, a parasite spread by house cats; Epstein-Barr virus, which causes mononucleosis; and cytomegalovirus. These people had clearly been exposed to those infectious agents at some point, but Torrey and Yolken never found the pathogens themselves in the patients’ bodies. The infection always seemed to have happened years before.

Again, emphasis mine.

Here just read XMRV for HERV-W, PWCs for schizophrenics, and fatigue for psychosis:

The initial infection could then set off a lifelong pattern in which later infections reawaken HERV-W, causing more inflammation and eventually symptoms. This process explains why schizophrenics gradually lose brain tissue. It explains why the disease waxes and wanes like a chronic infection. And it could explain why some schizophrenics suffer their first psychosis after a mysterious, monolike illness.

Sound familiar?

And here is the last paragraph, which brings hope:

She is running a clinical trial to examine whether adding an anti-infective agent called artemisinin to the drugs that patients are already taking can lessen the symptoms of schizophrenia.
Even after all that, many medical experts still question how much human disease can be traced to viral invasions that took place millions of years ago. If the upcoming human trials work as well as the animal experiments, the questions may be silenced—and so may the voices of schizophrenia.

(Artesunate, a derivitive of artemisinin, is what I am taking along with wormwood per Dr. Cheney's instructions.)

So besides the eerieness, the main thing I took away from this article is that CFS does not have to shift this paradigm alone. Schizophrenia is "one of the most common mental diseases on earth, affecting about 1 percent of humanity" A lot is at stake. People are doing research on this.

*After I posted this I did a quick google for "HERV-W cfs" and the first thing to come up was this thread on Phoenix Rising.

Is this a life?

2011-02-07T14:23:00.001-08:00

I know a few posts ago I wrote that I was feeling better. Well, forget about that. I am worse than ever.

I play Snood and Geosense. Any little online game that I can play without having to think. No chess puzzles. No crosswords. Just shooting little colored circles at other colored circles or clicking on cities on a map. For hours. Compulsively. I want to stop, but I don't, or can't. This happens sometimes and it's been going on for years. I tried deleting Snood from my hard drive for a few years but there are always other games free online that I will find my way to.

I suspect I do it because I can't do anything else. My biggest complaint right now, what bothers me more than my terrible digestion and back pain, is the inability to focus. But it's easy to focus on Snood. And if I tear myself away, what will I do if I can't focus on anything?

A few years ago I had been playing Snood for hours, compulsively. It must have been around this time of year because I remember my friend was over watching the Oscars. And for some reason I took an Adderrall. And after 15 minutes I didn't want to play Snood anymore. It was amazing. I was free. It was that easy.

But I don't think I have any now. And even if I did, they have some bad side effects sometimes. They're not something you can take regularly for too long. I know, I tried.

So that is one of my more obvious addictions/vices. But I think I have another: school. And yesterday I fell off the wagon.

School is a good thing, generally, but not for me. Not right now. I am too sick and school makes me sicker. I knew it was bad for me but I kept going and dropping out when I had exhausted myself, and going and dropping out...

And yesterday, even though I am worse than ever, and maybe because I am worse than ever, I let myself entertain the idea of online classes. I gave my contact info to a website and a minute later my phone was ringing. A representative wanted to talk to me about my educational opportunity.

We're just like a real university! We're for people with a burning desire to work in the career of their choice. You have to commit 20-35 hours a week to your classes...

Then I knew this wasn't for me and I tried to say so, I may have a burning desire but I was all burnt out so it didn't matter. But I was talking to a salesman so the conversation didn't end quite that quickly. But even after we hung up I kept thinking about it. It was like a little devil on my shoulder. Maybe you could do 20 hours a week if you didn't have to get dressed or drive anywhere for the classes or walk around a campus...you won't know unless you try...won't it feel good just to try?

And then I wanted to talk to someone about it, so I called my mom, who is always saying I should look into online courses. So she was happy to hear that I did, which had the unexpected effect of making me sad. We talked awhile and it actually ended up sounding like I was going to do it...even though I knew I wasn't.

20-35 hours a week

I think about my typical day. Waking up is hard, and nowadays, usually a little after noon. But once I've been up for 15 minutes and brushed my teeth and done my medicine routine, that's when I feel my best. But it lasts for half an hour at most. Then I'm weak, maybe from reading too much, maybe from not eating. Maybe for no reason. And then it's time to eat something or I will get even dizzier and fainter. I go to the kitchen (most days, there's been times I am too tired and just wait all day for my boyfriend to come home from work and get me food.) But usually I go to the kitchen and open the refrigerator. Sometimes I might stop there if there's nothing I can just grab and eat. Sometimes if anything requires mixing or heating up I give up and go back and lie down. But I'd say more than half the time I can heat something up or there is something I can just grab. So I eat. And then I start to feel the coma coming on. I feel poisoned, dizzy. I might lay down and just close my eyes. I might go to sleep. I might stay awake but be useless. And this is how I feel for the rest of the day, maybe I will feel better again around midnight.

At the beginning of the month I could read real books. But not now. I'm listening to The Immortal Life of Henrietta Lacks. It's really good. But I can't listen to it today. Today is one of those days I am feeling sorry for myself and don't want to listen to stories about people being doctors and journalists and driving and eating and living lives they apparently take for granted.

I'm afraid I haven't made my point but I have to stop writing and just post this soon or it will never get finished and posted.

I read Toni Bernhard's How To Be Sick last month. I really liked it. There is some great advice in there. Good attitudes I've tried to adopt. But it doesn't happen overnight. She says that when you feel sad about something you can no longer do, instead, focus on feeling happy for the people who can do it. Easy at first, but keeping it up as an attitude...will take time. She also says that when you are feeling sorry for yourself have compassion for yourself and compassion for everyone else who is suffering. It's a beautiful idea. But easier said than continually done. It's a Buddhism inspired book, but she says you don't have to be a buddhist to benefit from it or believe in God or anything like that. But there is one thing you do have to do she doesn't mention that is just a big a leap. You have to change your idea about what a full life is supposed to be. You have to be OK with being sick.

She was a law professor when she got sick and now she seems to be mostly housebound, like me. She says she discovered opera and tennis after getting sick. So on a night when her husband is going out with her family and friends and she is sad that she can't go, she tries to make the best of it and listen to an opera CD.

Today I got up and felt pretty good, considering. I was able to unload the dishwasher, which usually means it's a good day. Which is good, because last night was terrible. Jim was over. I don't remember what we did. Watched two episodes of Monk on TV and then he just hung around while I addictively played Geosense and ate the gluten free cookies I made him get me. I wanted to tell him about my day, about the online classes, but I was too tired to talk.

It's been 3 hours now since I had breakfast and I'm starting to come out of my coma...but I didn't eat much and I'll have to eat again soon. After I ate I sat on the couch and I asked myself, what can I do now? Can I do the Monday crossword? No. Can I read? No. Can I listen to an audiobook? No, no. Can I listen to music? Maybe... I thought of Toni Bernhard and her opera. I put on a classical radio station. At first it's energy and complexity annoys me, but after a few minutes I'm enjoying it and I close my eyes and lie down.

Lying on my stomach. Listening to classical music on the radio. I know this might be all I do today. "Is this a life?" I ask. And I know I have to answer yes, it is, because the other answer will be overwhelmingly depressing.

*My days are not totally books and music. Before I ate and right after I also talked to or left messages for 3 different doctors and wrote an e-mail. I think about doctors and medicines all the times. It just didn't just fit into this post.

Let’s all give each other a pass, shall we?

2011-01-17T15:47:00.001-08:00

I read David Rakoff's new book of essays "Half Empty" last month. The first essay is about an interview he did with a psychologist who wrote a book called "The Positive Power of Negative Thinking". She doesn't say pessimism is better than optimism, but that they both have their attributes as well as their blind spots, and whichever one you are, half empty, or half full, things will probably turn out the same regardless. I liked that.

The last essay was about his second cancer diagnosis. He had Hodgkin's disease when he was 22, and now in his 40's, he was diagnosed again with cancer and faced with the possibility of of losing his left arm because of a tumor. Fortunately for him he beat the cancer and kept his arm. But there was a long time where he didn't know how things were going to turn out. His account of his friends reactions to his illness is hilarious:

A friend asks if I’ve “picked out” my prosthetic yet, as though I’d have my choice of titanium-plated cyborgiana at my disposal, like some amputee Second Life World of Warcraft character. Another friend, upon hearing my news, utters an unedited, “Oh my God, that’s so depressing!” Over supper, I am asked by another, “So if it goes to the lungs, is it all over?” Regrettably, very possibly, I reply, and when I go on to mention as how they no longer give much radiation for Hodgkin’s he says, “Well, you got twenty-five years out of it,” as if the radiation was a defenseless washing machine I was maligning, and what did I expect, really?

But here is the part I wish I could tattoo on the inside of my eyelids as a reminder for myself:

...But here’s the point I want to make about the stuff people say. Unless someone looks you in the eye and hisses, “You fucking asshole, I can’t wait until you die of this,” people are really trying their best. Just like being happy and sad, you will find yourself on both sides of the equation many times over your lifetime, either saying or hearing the wrong thing. Let’s all give each other a pass, shall we?

Yes let's! Because as much as I get upset when I think someone has said the wrong thing to me, I worry much more about when I think I've said the wrong them to someone else who's suffering. It's all awful and awkward. We're all trying our best. I hope I can always remember that.

Snowman on a Ledge

2010-12-25T10:20:00.000-08:00

So glad it's a white Christmas here in Ohio. I made this snowman from the snow on my window ledge last week. Peppercorn eyes, carrot nose, two arms made out of pretzels...

He's melted away now but I like looking at the picture. Merry Christmas and Happy Holidays everyone, and take it easy!

Tarantella

2010-12-21T15:12:00.000-08:00

"Warning: Music Theory Ahead - Circle of Fifths" I'd been reading the first two chapters of The Only Basic Piano Instruction Book You'll Ever Need. I put it down. It was hard enough reading the basic stuff I already knew. Has my brain always wanted to shut down like this at the slightest onset of stress or difficulty? It's hard to imagine it was ever different, but it was, it definitely was.

My sister comes home and talks excitedly about what classes she'll be taking for her final semester of grad school. My brother, in his last year as an undergrad, laments the rigorous grad school application process. My dad spends most the day programming the final touches on his iPhone calculator app. I miss learning things.

I've been staying with my parents for a month now. I was feeling better when I set out, so instead of the usual herbal teas for colds and sore throats I packed yummy chocolate teas and caffeinated green teas. I had a separate suitcase just for books. (Getting a kindle this Christmas I think...) But as soon as I got home I got sick and had to have my dad run out to the health food store and buy me more throat comfort tea. A month later and I still haven't really recovered. My mom and sister are on their way home from taking Grandma out for a Christmas lunch. I'm sorry I missed it but I was afraid to go out in the cold feeling like this. And really, it would just be imprudent.

Haven't made as much progress in my books as I'd hoped. Haven't even started The Broom of the System, which I chose just because it takes place in Cleveland. Or so I heard somewhere, but when I mentioned it to my boyfriend who read it he wasn't sure. He's currently reading DFW's Everything and More: A Compact History of Infinity, the rare literary book that requires you to remember your college math. A computer science major, he's getting through it but slowly and with difficulty. I know I will never try. My math education ended my junior year when I failed trig. Or was it the year before when I slept through every Algebra II class? (I felt terribly guilty about it, but it was after lunch, and still now most days I don't have the energy to digest food and stay awake at the same time.) It's a little sad because one of my most vivid childhood memories is my dad telling his little girl, who back then was a good math student, to make sure to take calculus because it was what "separated the high paying jobs from the low paying jobs"

My regrets about never learning calculus are small. I did love physics. I think I can mark the strike of my CFS by my grades in physics, sophomore year, A's first two semesters, and C's and D's the last two. I remember everything going foggy and blaming it on the student teacher not being very good. I remember my professor asking me in front of the whole class, mostly seniors, if I had "sophomoreitis". And I also remember the day he pointed a video camera at us connected to a TV and everyone laughed because my face was the only one you couldn't make out. I was all a white blur in the low resolution with my pale skin and blonde hair.

Physics was fun but I was never going to be a physicist, CFS or not. I would have taken calculus though, it would've looked good on my college applications, and I would actually know what my dad is talking about when he tries to explain to me all the advantages of his iPhone calculator app. That would be nice.

So when I got to the Circle of Fifths Warning, I put the book down. Learning the Circle of Fifths and all that theory was exactly why I bought the book, but today's not the day. There will only be one or two windows of opportunity in the next month or two where my brain and body are ready and willing and normal enough and I can sit at a piano and try and learn. But not today.

Instead I pick up Unbroken. It was not in my suitcase of books. Our town has an independent bookstore and when I first got home I asked my mom to take me there so I could get a birthday card to send to my boyfriend. I didn't want to buy anymore books. My recent pilgrimages to Elliott Bay Book's and Powell's left me with more than enough. Plus I had asked for that Kindle for Christmas. But then I saw the store owners had put it on the main display. It was the only featured book, my heart melted a little. Not that they knew about her CFS and did it out of the goodness of their hearts, they did it because they knew it would sell, be a good Christmas gift etc. But still. I picked it up and mumbled something about having to buy it. My mom asked why, and I told her about how the author had CFS and I felt some kind of duty, affinity. "I'll buy it for you" she said, before I was finished trying to explain.

My bookmark is only on page 11. I flip to the back cover. All the reviews are for Seabiscuit, except the one on top, from Rebecca Skloot, "author of The Immortal Life of Henrietta Lacks" which I was excited to see featured at both Powell's and Elliott Bay and on pretty much every top 10 list this year. I remember turning on NPR and hearing an interview with the author back in February when it came out, but I didn't catch her name. If I did though I would have immediately assumed she was related to Floyd Skloot. (How many Skloots can there be?) I don't remember exactly which of his contributions to Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome made such an impression on me that I googled him, but, I had. (I can't look now, the books' at my Los Angeles apartment.)

I read the author bio for Laura Hillenbrand which mostly lists all the accolades for Seabiscuit and reminds you that it was made into a Academy Award nominated movie. It mentions her charity work. And it mentions her New Yorker article "A Sudden Illness" won the 2004 National Magazine Award. It doesn't mention CFS. It's on a need to know basis, really, isn't it? Her fatigued fan base knows what the "sudden illness" is. And we know why the advanced review is from Rebecca Skloot, what same circle they are in.

So far Unbroken is a joy to read but at the pace I'm going I know I won't be done by Christmas, which is good. I'll have it to read on the plane ride home. If only Kindle gave discounts for books if you could prove you already owned a hard copy. Oh well. I will carry this heavy book onto a plane with me.

I'm drinking delicious Throat Comfort tea now, hoping it will help my broken sore throat. It's hard because I've been singing so much lately, before the sore throats, that is. I'm used to singing every chance I am alone. Every shower, every car ride. Sometimes, elevators. The last year and a half though I have been too tired to sing at all. Too tired to sing! It isn't easy, alone in my apartment, to listen to my favorite songs and keep quiet. But it's not like I have a choice. My lungs are heavy. My voice is small. And if I dare to try, I have to give up after a few lines.

As I've noted previously though, November was a good month. One day maybe during the third week, I sat down at my desk in my swivel chair and drank two cups of heavily caffeinated chocolate tea with every intention to write 3,000 words to catch up for NaNoWriMo. I didn't get a word written though. I played a song that was in my head, and realized I had more than enough energy to sing along, and loud. And that was what I did for the next hour. I sat in my swivel chair and swiveled around and sang along for a whole delirious hour.

Less than a week later, sore throat, coughing, congestion, fever. And I think, it always seems like whenever I sing too much I get sick. And it makes me sad because I don't want to stop singing. I've been noticing this possible pattern for years now. And only this time did it occur to me, maybe it wasn't the singing that caused me to get sick, maybe I was singing because I was sick.

In almost every beginning children's piano book there will be an arrangement of a Tarantella. There was in two of mine. And they will say that it was a dance the Italian villagers did when they were bit by tarantulas to try and sweat the poison out of their system. Later I heard somewhere that it was actually the poison that made them go crazy and compelled them to dance. I thought I should get my facts straight before I blogged about it, but my Wikipedia research was inconclusive. The main article on Tarantella said it was both, the bite caused a hysterical condition called "Tarantnism" "the symptoms of which were an irresistible need for a wild and rapid whirling motion bringing the victim to the point of exhaustion. For a long time, the local population believed that the only way to suppress the symptoms and to cure the bite was by using a very rhythmic and fast music."

But when I click on "Tarantintism", the wiki-authors caution that there are strong suggestions that "there is no organic cause for the heightened excitability and restlessness and that gripped the victims." And that "The phenomenon of tarantism is consistent with mass psychogenic illness."

I get annoyed and stop reading.

a poor go-to-sleeper

2010-12-09T12:34:00.000-08:00

Going through my old journals last night around 3am. Found this quote I copied from about two years ago when I was reading Vladimir Nabokov's memoir. I liked it so much I typed it all out:

All my life I have been a poor go-to-sleeper. People in trains, who lay their newspaper aside, fold their silly arms, and immediately, with an offensive familiarity of demeanor, start snoring, amaze me as much as the uninhibited chap who cozily defecates in the presence of a chatty tubber, or participates in huge demonstration, or joins some union in order to dissolve in it. Sleep is the most moronic fraternity in the world, with the heavies dues and the crudest rituals. It is a mental torture I find debasing. The strain and drain of composition often force me, alas, to swallow a strong pill that gives me an hour or two of frightful nightmares or even to accept the comic relief of a midday snooze, the way a senile rake might totter, to the nearest euthanasium; but I simply cannot get used to the nightly betrayal of reason, humanity, genius. No matter how great my weariness, the wrench of parting with consciousness is unspeakably repulsive to me. I loathe Somnus, that black-masked herdsman binding me to the block; and if in the course of years, with the approach of a far more thorough and still more risible disintegration, which nowanights, I confess, detracts much from the routine terrors of sleep, I have grown so accustomed to my bedtime ordeal as almost to swagger while the familiar ax is coming out of its great velvet-lined double-base case, initially I had no such comfort or defense; I had nothing-except one token light in the potentially refulgent chandelier of Mademoiselle's bedroom, whose door, by our family doctor's decree (I salute you, Dr. Sokolov!) remained slightly ajar. Its vertical line of lambency (Which a child's tears could transform into dazzling rays of compassion) was something I could cling to, since in absolute darkness my head would swim and my mind melt in a travesty of the death struggle.

Joint Hypermobility

2010-12-05T15:43:00.000-08:00

I was excited to see this article by Maija Haavisto about Joint Hypermobility and CFS/ME. It's the first time I've seen them mentioned together, and I've been wondering about it for awhile.

About five years ago my left shoulder started making loud snapping and clicking noises whenever I moved it. Like my shoulder blade was smacking against my ribs. It was weird. My doctor also said it was weird and referred me to an orthopedic doctor. It was a long drive but I was worried my arm was going to fall off soon, so I went.

I read baseball magazines in the exam room while I waited for the doctor. That's all there was and they were everywhere. I picked one that had an article about the Cleveland Indians on the cover, it made me feel at home.

He came in and I lay down on the table and he put one hand on my shoulder and one on my wrist and moved my arm around to test the range of motion. Apparently he was impressed.

"Look at that! Do you play softball?"

"I did when I was a kid."

"Were you a pitcher? I bet you could throw really hard. See how far your arm comes back?"

"That's far?"

"Yes!"

"Well, I guess I threw pretty hard..."

"I wish mine went back that far! Were you always flexible as a kid? Double jointed?"

"No not at all! I was always the least flexible person in my dance class. I tried so hard to stretch every day but..."

"Usually this kind of injury happens to people who are hyperflexible."

"Well that's not me. Is there anything I can do about it?"

He said he'd write me a prescription for physical therapy which helped a high percentage of the time. There was also a surgery option but I didn't want to think about it yet. At the time it wasn't very painful.

He gave me a printout briefly explaining my diagnosis of "hypermobility" It said it usually happened to athletes and the elderly.

"So how did it happen to me?"

"I don't know. Why do you have blonde hair and I have brown?"

I asked if it could have anything to do with my CFS, maybe poor circulation, but he waved me off. "No! How could this have anything to do with CFS?"

I thought about asking, "Do you know what CFS is?" but didn't bother.

I never used my prescription for physical therapy. I told him I was at USC, and he told me to go to one of the sports physical therapists there. This made no sense to me. Whatever treatment I got would really for people who had "injuries" as in, you could remember a specific time when you injured it. This had happened gradually and with no outside cause, so I wasn't sure if physical therapy could help any. I was convinced it was some kind of insidious symptom of the CFS.

Now I'm fortunate enough to be working with a physical therapist in my neighborhood who's been through CFS. The click is still there but it's gotten a little better, along with the pain and soreness.

When I got really bad, when I couldn't eat and stayed in bed all the time, all of my joints clicked, my other shoulders, my elbows, my knees, my hips, my neck, and finally I could feel individual vertebrae clicking in my spine when I stood up. It freaked me out. Thank god it's gotten a lot better and now it's mostly just my shoulders and elbows. And sometimes the neck, which freaks me out the most. I make a point never to let my head hang backwards, in case it snaps when I pull it up again. It doesn't really hurt, but it's...weird.

Dear Sugar

2010-12-03T15:56:00.000-08:00

This Dear Sugar column made me cry. This woman was in the process of breaking up with her boyfriend, when someone broke into their apartment, attacked her, and left her paralyzed. They stayed together, they got married. He couldn't leave her in a nursing home. (Though he tried.) Now she's miserable. She doesn't know if the relationship is right, but leaving him is not an option, she has nowhere else to go.

Sugar's advice is to stay with him and try and make it work. All the commenters agree, except one, who is also disabled:

"I am disabled as well and this is very very very bad advice. We don’t have to put up with unhappiness such as the writer describes due to circumstance we find ourselves in. You basically tell her she’s weak and she has no CHOICE but to make the most of a situation that is not making either partner remotely happy."

I wish the above commenter was right, but I don't know. That's why I haven't left a comment of my own.

Hitchens meets Brain Fog

2010-11-23T20:17:00.000-08:00

"The worst days," he says, "are when you feel foggy in the head – chemo-brain they call it. It's awful because you feel boring. As well as bored. And stupid. And resigned. You don't have any motive, which is bad. You don't care what's going to happen to you. That lasts sometimes two days. And when that comes with nausea – even if you have eaten, you have to go and be sick – it's very upsetting."

http://www.guardian.co.uk/books/2010/nov/14/christopher-hitchens-cancer-interview

I don't care when celebrities get engaged, or divorced, or arrested, but when they get sick I find myself wanting to know every last detail.

"Brain Fog", for the first few years, was my main symptom and the hardest to define. When I try and explain it to people I always get the feeling they don't really believe me. Not because they think I'm a liar, but it's just hard to describe, and it's hard to fathom. Next time I will just say, "Christopher Hitchens put it best..." and rattle off this quote. Not that this is really "the best" description, but it's all in the name dropping. The idea being, if it can happen to him it can happen to anyone.

Cher

2010-11-15T17:22:00.000-08:00

I'm here to confess, it took some restraint not to reply to Patton Oswalt asking for the number. It's not that I actually believe I could benefit from that kind of thing, but I strongly feel that going to Cher's spiritual healer would be a invaluable experience in my personal CFS journey.

Of course, I have to ask, how is Cher doing? Does anyone know? I haven't been able to find out much information, beyond the fact that she may or may not have CFS. And, as I also #lovelivinginHollywood, my pilates teacher offered to hook me up with Cher's acupuncturist. But I haven't gone because I don't know how Cher is doing. Does anyone know? Seriously.

Laura Hillenbrand

2010-11-13T12:37:00.001-08:00

I can't remember now where I first saw Laura Hillenbrand had a new book out. Maybe a banner ad on amazon.com, or one of the many bookish websites I frequent. I don't know the exact date either, but I know it was shortly after I had decided to try NaNoWriMo aka Crazy Write a 50,000 word Novel in a Month, Month.

I'd tried it before and failed. I didn't want to spend four hours every day writing about being sick, but on the other hand I couldn't conceive of a character and a life that didn't involve CFS. So I wrote 600 words and gave up. This time, I thought, I would take a different approach, I would write about a real person: spend half the time reading/researching and then turn it into writing. My inspiration for this idea was Laura Hillenbrand, author of Seabiscuit, whose own CFS story I've always kept a link to on my blog. One line kept coming back to me, "I hung Red's picture above my desk and began to write."

So that was my plan for the month. I printed out some pictures of virtuoso thereminist Clara Rockmore and have been writing every day since. I don't care that before she died she sold her life right's to Sony, or that there's a real writer and musician out there working on her biography and planning to publish it next year. I just wanted something to write about to see if I could still write. Because even though I love Laura Hillenbrand's story, I can only partially identify with it. Like this quote from the USA today article about her and her new book:

She went from being a college student suffering from apparent food poisoning to dropping out three weeks later. She visited doctor after doctor who assumed her symptoms — profound exhaustion, weight loss — meant she was depressed or anorexic until an expert at Johns Hopkins diagnosed her with CFS.

For me it didn't happen exactly the same way but I also had to drop out of college my sophomore year. I was labeled depressed and anorexic until I was finally diagnosed with CFS. But the difference between us, I thought, was that she could still write. Sure, the part of her brain that kept her balance was shot out, but the part for writing was still fine. The writing area of my brain was shot. Gone. She went to Kenyon college in Ohio, I grew up in Ohio and thought about applying to Kenyon college because it was a college for writers, and I'd wanted to be a writer, until my senior year, when I suddenly and mysteriously couldn't write anymore. Or do math. Or go out much.

These past two weeks have been good for me. Every day I write it's like I'm climbing out of a hole. I'm just one day behind schedule. (From the day before I got my period, always a lost day...) Reading the USA today article though, profiling Laura, relating her suffering from CFS to the suffering of her subject in Japanese POW camps, it pulls me back down, somewhere. It makes me relive my own story, and it's hard for me to take.

I wish I could express exactly why I like Laura Hillenbrand so much. I haven't read her book, though I'm planning to. I just...I admire how she talks about her illness in interviews. I love how she knows what to say and what not to say. In a WSJ interview she talks about how Seabiscuit is about accomplishment and Unbroken is about survival, both in the face of tremendous suffering. And that's all she says. I don't know. She tells the truth. "'This is going to be hard,' she says. 'I'm very afraid. I'm not functioning well. I'm going to have to be careful that I don't slip back to the bottom.' " She doesn't take leaps of faith or make projections. She's not an inspirational speaker, like her latest subject. She's a novelist. And a really good one.

The Wall Street Journal article opens with a description of the now 93 year old hero of her new book, and how he doesn't let old age get him down and still trims trees with a chainsaw every day or something. "I have a cheerful countenance at all times," he says. "When you have a good attitude your immune system is fortified."

Blah, Blah, Blah...Fuck you, war hero! So that means it's my own fault I'm sick because I wasn't cheerful enough?

See, that's what I thought when I read that. But best selling novelist Laura Hillenbrand would never think that, right? And if she did she wouldn't write it.

I took a year off after high school before I went to college, hoping I'd figure things out, overcome my mysterious depression, and my mysterious writer's block. I read a book about procrastination with a clever title, "The War of Art." I can't quote from it directly because it's at my old bedroom in my parents house, it's not a book I want with me. But there's one part where the author, historical fiction writer, Steven Pressfield talks about people who get cancer and, faced with death, quit their jobs and move to New Mexico to live their dream of being a painter. "And what happens? The cancer goes away."

I was 18 when I read this. Young and impressionable. Now when I read something like this I just ignore it. But then it sounded like a secret magical key to life. And it stuck with me and I keep having to stomp it down. Yes, an illness can cause you to reevaluate your life and inspire you to do what you really want to do. But that's not going to save you from it. It didn't save Laura Hillenbrand.

I'm cynical. I'm in my 20s. And, I have a greatly debilitating, highly misunderstood disease. And yet, what did I want to write about? Clara Rockmore. I saw her in the documentary Theremin: An Electronic Odyssey. I can't say for certain now but I think it gave a fairly one dimensional picture of her. She was a virtuoso thereminist and Theremin was in love with her. End of story. But then I looked her up on wikipedia and, it said she had been a classical violinist and had only taken up theremin when arthritic arm pain from a childhood of malnutrition ended her violin career. Then I got interested. What's that? Overcoming physical limitations and succeeding? Yes...tell me more of that story...

I was as interested in reading the comments section of the USA Today article as I was the article itself. Whenever there's an article about CFS that merges with the mainstream, there's always comments from PWCs who want to use the opportunity to really make clear how much we suffer:

Sharbear wrote:3d 6h ago

Living with that disease is hell. I wish her only the best.

And then there's the ones you hope for, the kind souls who see the light:

Ripleybird wrote:3d 7h ago

I knew she suffered from CFS but had no idea of the degree to which she suffers. I wish her the best and am keeping my fingers crossed for more stories.

And then there's this one:

hoosierbo47 wrote:3d 12h ago

The central theme of existentialism: to live is to suffer; to survive is to find meaning in the suffering. Both Hillenbrand and Zamperini have found their meaning in their lives. Two courageous individuals, for sure.

Up Early

2010-11-09T19:13:00.000-08:00

I had to get up at 8:45 today to take my car to the dealer to have the fluids checked. I woke up before my alarm went off and stayed awake in bed until it did. I guess daylight savings is having an effect on me.

I don't remember when I got to sleep last night, but it was at least by one, probably earlier. So that's at least 7 and a half hours of sleep. Not as much as I'm used to but it's not so bad that I should feel this tired.

I almost fell asleep twice today, once waiting for the maid, and then I had to be awake while she was here, and once while waiting for the dealer to call saying I could come get my car. (Or call a friend and have them take me to my car.)

I just fell over onto the couch and didn't set an alarm because I was expecting the call to wake me up. And at some point I woke up and it was so dark outside and I thought, "It must be 8:00! What happened to my car?" I checked my phone and saw it was only 5:30, still a half hour for them to call. Also saw that I had an e-mail from them saying they'd been trying to reach me for the last half hour. (They had my number one digit off, 2003 instead of 2013...just realized that in two years the last four digits of my phone number will be the same as the year, what a fun year that will be, I'll be 29!)

They said they couldn't finish the car tonight but they could have it for me at 9am tomorrow. (So I wouldn't miss too much work.) But I realized the only thing I had to do tomorrow was go to pilates at 2:00, so I told them please not to call me until after 11. "I have to sleep in"

A little better

2010-11-05T17:42:00.000-07:00

I've been better. Maybe it's the cool weather. (Not today though, today is hot, and I'm feeling sluggish)

Proof of my betterness:

11 day road trip (8 days of driving, 3 in Seattle)

3 parties attended for Halloween

7,000 words written for NaNoWriMo

A few months ago I gave up Klonopin, and I can say now that was a mistake. I started back on it slowly to help myself start sleeping again at night and I noticed that on days I took it I always felt better. So now I'm back to taking Klonopin every night and it's great. Sometimes I take two. Last night I didn't take any though because apparently my CVS doesn't stock them anymore. Should be in today though. Maybe if I'd taken one last night I'd be well enough today to go to the pharmacy.

Instead I dreamed crazy dreams all last night. One was a return of the classic I've had since I first started getting really sick, basically, I can barely move. I'm extremely heavy. I have to meet my new college roommate and I can barely crawl across the floor to greet them. This time I was in my yard, gathering giant lemons that had fallen from my neighbors giant lemon tree. Only I find I can only move very slowly and so slow it is not discernible to the naked eye. And while I'm concerned about this inability to move in these dreams, I'm pretty blasé about it. It happens all the time. My main concern is how embarrassing it is. My neighbor walks by and sees me crawling around the grass, "Oh just gathering lemons", I use all my strength to say and sound casual.

I've been pretty much free of these dreams for a long time now so their return scares me a little. I'm afraid it's a sign I'm headed for another bad spell. I have another weird theory. I once read that estrogen is the hormone for inner visuals, so that's why women read more novels than men, they lose themselves more easily in vivid pictures of characters and settings in their head. I don't know. Anyway, Since I decided to do NaNoWriMo and have been trying to write four hours a day, I wonder if I've set something off in my brain and opened the estrogen flood gates and thus opened myself up to more vivid dreams and less restful sleep. It's just a theory...

In saner theories, it's been just about a year now since I started Dr. Cheney's protocol. He told me if I was to feel any different, it would take six months to a year or two years. And this past month, there has been a noticeable difference. Until then I kept getting worse, but now I think I can say, I'm better off than I was a year ago.

I've said NaNoWriMo twice now without explaining what it is. If you've never heard of it, it's this thing where everyone signs up online and pledges to write a 50,000 word novel in a month. To do it you have to average 1,667 words a day. I gave it a try two years ago when I was pretty much house bound, thought that would be the time. It was not. I think I struggled to get 600 words that first day and then I gave up. "NaNoWriMo frenzy" = not for CFS, I concluded.

Do you ever read author interviews about their writing process? They're always so modest. "Oh, there's nothing special about me. I just sit down to write day after day. That's the secret. You have to write every day."

I've been hearing this for years. I know David Sedaris always makes that point in interviews. But David Sedaris also has OCD. Everything he does he probably does everyday, exactly the same. With CFS, you don't do anything everyday. Which is sad news for anyone with CFS who wants to be a writer, or learn anything new, really.

I'm amazed I've been able to write about 1667 words a day. But each time I finish, that's my limit. It's beyond my limit really. If I ever missed a day, I don't think I could catch up. I don't even know if I'm going to make the minimum today. Too bad I can't count the words of this blog. It's fun trying though. Besides being hard on yourself esteem (novels written this fast are guaranteed to suck) it's given me something to do every day, like a job. A sense of daily regularity and responsibility I have not had in almost two years. It's just too bad that if I miss a day, and I will certainly miss more than one, I have no chance of catching up and "winning." Probably. Maybe I will drink lots of coffee the last two nights and write 10,000 words in one go. I haven't had coffee in three years so it should work pretty well on me. (I'm using green tea now for my caffeinated writing fuel now.)

Finally, the road trip. My friend and I had been planning it for awhile. We have quite a few trips under our belt. We used to sleep all day and drive all night. Usually turns at the wheel would be 8 or 9 hours. I once, by myself drove 17 hours straight, on no sleep the night before. It was incredibly stupid. I can't believe I did it though.

This time, I told her, I could do maybe two hours at a time max. And I was being optimistic.

As it turned out, she did do most of the driving, but I did more than I thought I could. And I hardly had any back pain at all. My back pain has definitely gotten better. Thank you pilates! All those flexible spine exercises are working.

The second night of the trip was bad though. I felt like I had a 102 fever. I was afraid I was going to get the flu and be stranded in Twin Falls Idaho for a few days with no health food stores. And I'd be stranding my friend too and ruining out trip. That night she carried in all the bags from the car, checked into the hotel. I just had to crawl into bed. I took extra Klonopin and inosine and didn't use the cell-signalling factors, something Dr. Cheney said to do last time I had the flu. I was sure as I was falling asleep I'd wake up feeling worse. But I felt a little better. It was still a bad and achey day, but I got over it quickly.

In Seattle I mostly kept up with my friends. One night I went to bed when they went out, but the next night I stayed out as late as everyone. (I'd also eaten a bowl of tapioca pudding with tons of raw cacao.) And when they went to EMP and the SciFi Museum I sat in a crumpet shop and drank tea. (I'd already been to the museums anyway.)

Overall I'd say the trip was a success. It was the first trip we actually were able to get up early and do most of the driving in the daylight. (Most of the time) So we could actually see the scenery and not just wonder about it as we drove through the dark.

So in conclusion:

Klonopin rules

I'm going to write a bad novel

I went on a road trip! Despite impossible odds.

The funny thing is I don't exactly feel good boasting about my road trip success. CFS has made me think of energy as a gift and a mystery. It's not something you have control over, it's not something to boast about. Not that I've been boasting, but I have been celebrating. But have I really had more energy, or am I just pushing myself? Which is not an admirable thing despite what the rest of the world may think, people who don't know about CFS. I can't be proud for pushing myself, and I can't be proud for doing nothing. I try to be proud for doing nothing, but, so far it's not working out.

Retest

2010-09-27T17:07:00.000-07:00

I might get to find out exactly which of the human gamma retroviruses I have.

A week ago I got a letter from VIP labs saying that since I tested negative last year for XMRV I could get this test free. I don't even need to send in any more blood. Which is funny, because last year I was told my test result was "inconclusive" and that I needed to send in more blood, so I did, and then the next day they wrote and said my result was positive after all and that the additional blood wasn't needed.

The letter said this was a one time offer and I had to have this form completed and signed by myself and my doctor by September 21. It was September 20th.

But, I did it. I don't know how long I until I get results, but the letter asked me to allow "sufficient time."

Meanwhile I'm sticking to my decision to hold off on any major treatment decisions for awhile until more is known. And while I wait I'm going to keep trying to do the best I can with my program of good sleep, good nutrition, gentle exercise, low stress.

I haven't been doing as well this last summer. At some point I decided I'd be happier if I stopped trying so hard and gave up. I stopped reading about CFS online. I stopped trying to research anti-retorviral therapy and stem cell therapy. I only considered these things in moments of panic when I was at my worst, after days spent in bed afraid I'd never get out.

Then I thought since I was getting worse, not better, in spite of my strict diet, why shouldn't I let myself eat french fries whenever I wanted?

Then I thought that there was no point in working so hard to sleep at night and be awake during the day if I always felt better at night anyway. Why not stay up late and and sleep as late as I wanted?

But I've had terrible headaches almost every day this week and I think it's from the junk food. And even though letting my body sleep when it wanted might actually be a good thing, going to bed at 10am and waking up at 10pm is not as fun as I remembered.

Of course, the real reason I kind of let myself go was because I needed the rest. I've really been at a low point, energy-wise.

Today is a good day though, in spite of the 110 degree heat. I don't have a headache. I woke up before noon. I was able to unload the dishwasher myself for the first time in months. I can stand up without too much effort. I can read, I can write. I still need to lay down and sleep after I eat, but all in all this has been a good day. I really hope I get some more.

Mouse Virus

2010-08-26T11:23:00.000-07:00

The past two months I've constantly felt like I was about to pass out, which made it hard to read, write, watch tv, talk, drive and carry on conversations. Until last Saturday when it suddenly went away. And when I tell people I am feeling better they sometimes ask, "Why do you think that is?" or "What do you attribute that to?" and I have to wonder what kind of answer they are expecting. Next time someone asks me something like that, I am just going to answer, "mouse virus."

Even more annoying is the person who should really know better by now, who, when I told them I'd been feeling better this week asked, "So what now, are you going to go back to school?" This was really the last person who should have been asking me that. I wish I had given them a disappointed look, said "Really?" and walked out of the room. But instead I swallowed my pride and frustration and calmly said, "No, I'm not an idiot, " and explained how I'm wasn't feeling that much better. And even if I were, after a week of that much activity, I would crash again. Just like what happened the last time I tried to go back to school. And the last time...

Of course if I were miraculously cured and felt really good, how would I know if the post-exertional malaise was gone too? Would I just have to try and see? Go for a long walk and see if I wake up feeling poisoned the next day? Enroll in one class and see if I can handle that? Then next semester enroll in two?

Maybe by this time next year I could go to a doctor and they will actually be monitoring my viral load and will be able to tell, in a quantifiable way me how much better I am. That's the dream.

Actually though if you really suspected you were miraculously cured of CFS you could just take a two day exercise test. If you were cured, your VO2max and anaerobic threshold would not drop the second day.

It was encouraging to see so much written about the PNAS paper in the news. It was the most popular article on Monday in the LA Times health section. On Tuesday the news was even on my favorite NPR show, Marketplace. Why was it on a show about business news? Because this groundbreaking discovery was made entirely with private funds. No thanks to the CDC.

And speaking of the CDC, this is interesting: On the FDA website there's an FAQ page about the new study. Question 10 is about the discrepancy between the latest study, which found MLVs, and the CDC study, which found nothing. The FDA tested 34 of the CDC's samples, and they also found nothing. I'd very much like to know more about this. When enough studies are done, and there is a general consensus that MLVs cause CFS, which I think will happen, how will it look if none of the CDC's "Chronic Fatigue Syndrome" samples have the virus?

Big News

2010-08-19T01:54:00.000-07:00

Just found out the PNAS paper is coming out Monday. Now I'm all excited and I won't sleep. My life is strange.

Still Sick!

2010-07-05T18:53:00.000-07:00

Somehow a whole month has gone by since my last blog. And somehow five years have gone by since I've finished a semester of college. Oh well.

I've been following the whole CDC/NIH/FDA XMRV thing very closely and with a lot of excitement. I just want them to hurry up and get it all sorted out.

My 24 urine test/hormone analysis revealed I do not have tertiary thyroid syndrome. (Yay!) It did show that my hGH (human growth hormone) was extremely low, low enough to warrant treatment. But we're not treating it because hGH activates XMRV.

Two or three years ago I thought low hGH might be what was causing all my problems. My bloodwork showed some kind of marker for low hGH so we had to do another test, but then it turned out my hGH was in range. Overall it was kind of a disappointment. Low hGH was such an easy fix. I'd have to learn to give myself frequent shots in my thigh, but other than that, easy fix.

But I'm still betting that XMRV will be shown to be the cause CFS, so no hGH.

Also, I got bit by a tick, somehow. In my last blog I said I'd take a months worth of doxycycline if I got bit by a tick again, but I'm not. I'm also betting that XMRV is the real cause behind chronic lyme.

I spent the last month slowly weaning off Klonopin. I thought I might sleep better without it. I'm finally off now, after having spent the last week taking 1/4 of a tablet every other night. I'm already wondering if it was a bad idea. My sleep is about the same, but really I'm supposed to be on Klonopin for its "neuro-protective" properties. I'm wondering if I haven't blogged all month because I don't have Klonopin protecting my neurons anymore.

And...I think I've already written as much as I can. That's it for me. Oh and by the way I am thinking more about stem cells again. I don't know why I stopped. What did I think I had to lose?

I just want to leave you with this quote I found in my old notes. It's about being really poor, but I think it applies to being really sick as well:

"Multiple Bee Stings"

Karelis, a professor at George Washington University, has a simpler but far more radical argument to make: traditional economics just doesn't apply to the poor. When we're poor, Karelis argues, our economic worldview is shaped by deprivation, and we see the world around us not in terms of goods to be consumed but as problems to be alleviated. This is where the bee stings come in: A person with one bee sting is highly motivated to get it treated. But a person with multiple bee stings does not have much incentive to get one sting treated, because the others will still throb. The more of a painful or undesirable thing one has (i.e. the poorer one is) the less likely one is to do anything about any one problem. Poverty is less a matter of having few goods than having lots of problems.

See this is why, despite having terrible tooth pain all month, I'm just this week getting to the dentist.

"What?? You still haven't gone to the dentist? Why? What if you have an infection?"

Oh yes, what a terrible thing that would be...

Dr. Lerner, Lyme Disease, and other Doctors

2010-06-03T14:06:00.000-07:00

I was surprised to see Dr. Lerner’s face on the front page of Phoenix Rising last week. A lot of doctors are mentioned on the forums there but I didn’t remember ever coming across his name in a thread. I read the headline “Lerner antiviral Treatment Trial Succeeds” with mixed feelings. Clearly this is good news:

“Long term antiviral therapy was effective - very effective - in many of his patients. Many of them, while not completely cured, are able to work and lead normal lives again - an astounding finding in this field. Some are completely cured.”

Still I couldn’t help feeling a little left out as I read the article. Dr. Lerner was the first CFS doctor I ever saw. But on my second visit, after two long drives to Detroit, he told me I didn’t qualify for antiviral treatment. Instead, I had erlichiosis, a tick borne disease, and should do six weeks of IV-doxycycline.

This was two years ago in May. A friend sent me some articles about his work, and we both got excited and made plans to see him. Every night between then and my appointment was like Christmas Eve, but instead of staying up late thinking about all new toys I’d be getting, I read the pateint testmonials page of Dr. Lerner’s website over and over:

“Today I am CFS free! Dr. Lerner gave me back my life.”

“My activities are not restricted. I can travel, exercise, and work. I need only a normal adult amount of sleep, as opposed to 10 or 11 hours.”

“After receiving treatment from Dr. Lerner, my CFS symptoms went into remission. I graduated from graduate school in 1998.”

And this one stuck with me the most,

“When I first saw Dr. Lerner I was so ill, staying awake was a big chore for me. I would sleep for 19 hours at a time. I would take a shower but be too exhausted to blow my hair dry.”

The last one was my favorite because that was one of my first symptoms in high school. Eighth, ninth, tenth grade, hair straightening was like my religion and accounted for 45% of my personality. For example, freshman year in the locker room I noticed a girl who I’d seen before with curly hair was now wearing it straight. We struck up a conversation about blowdrying, and we remain best friends to this day.

The trick was it had to be done right after you showered to get it just right. Those curls came on fast. And then in a matter of weeks, all I could do when I came out of the shower was collapse on my bed. Post-shower naps became routine. The word “enervating” became part of my vocabulary, as in, “Showers are so enervating!” I had to wear ponytails all the time and put lots of anti-frizz gel on my air-dried hair. And yet, it never occurred to me this was a sign I was sick. I know I was always saying then, “I think I have mono” but the doctor kept telling me I didn’t, so I believed her, that I was normal. So if I was normal, than everyone else must be incredibly vain to put so much precious little energy into cleaning and styling their hair! I am a brilliant rationalizer.

It wasn’t until six years later when I started having what I thought of as “physical symptoms” like constant pain, that made me finally realize there was something really wrong. Reading that testimonial is what really made me identify with CFS as a disease. “Chronic Fatigue” wasn’t very concrete, but “Oh! I have the ‘too tired to shower and blow dry your hair’ disease!” rung true.

My mom and I sat across from Dr. Lerner at our first office visit and he told me I was going to get better. It was hard to believe, but I believed him anyway. Even when he told me I didn’t have the right blood test results for the valtrex/valcyte program, I believed when he said that treating erlichia was the answer. It happens that I was bitten by a tick before my first symptoms appeared, a year to 18 months before I got sick really. I was on vacation with my family and we went on a horseback ride in Wyoming. My mother was cautious of ticks, and made sure we all wore long pants, but tragically, it was 1998 and flared jeans were all the rage, so the tick had no trouble flying up to my leg and latching on for a good few hours.

I was actually really happy to have this diagnosis. It made me forget completely about Dr. Lerner and Valtrex. I told all my friends and family I didn’t have CFS, I had lyme disease. But there were some problems, no doctor I saw in Cleveland agreed. Because I didn’t want to live in Detroit for six weeks to get IV doxycycline from Dr. Lerner, I asked if he’d write me a letter I could take to an infectious disease specialist back home. This is how I found out that Lyme disease was something of a controversy. No doctor I saw agreed with Dr. Lerner’s diagnosis. They said there was no such thing as Chronic Lyme.

Now it was all making sense. There had been a couple of times over the years where “What about Lyme disease?” had occurred to either me or my mom. But whenever I asked my doctors about it they’d say, “You don’t have lyme disease. Don’t believe everything you read on the internet.” or “There’s no lyme disease in Wyoming or Ohio.” And so that was that.

I read Cure Unknown. I watched the trailers online for the yet to be released Under Our Skin documentary. I was convinced that this was what I had. There were descriptions of symptoms in Cure Unknown that I really identified with. There was even a description of writer’s block like what I went through in high school:

Mark, meanwhile, was teetering at the brink of professional disaster. He’d spent twenty years writing for national magazines and health foundations in New York City, yet now was so blocked he was in danger of losing his job as editor in chief of the newsletter Bottom Line Health. His memory, previously detailed and precise, had become so spotty he had trouble following the train of a simple story.

And another one that summed up perfectly in a few sentences what had been my high school "sleeping problem" experience:

Our youngest son, David, began to sleep – first so long that he could not do his homework or see his friends; eventually, so much (fifteen or more hours a day) that he could not get to class. Violating the strict attendance policy at his prep school, he was asked to leave.

The only difference is I left prep school before they could ask me to leave. And then I slept through public school. Looking back, if I couldn't have been diagnosed with CFS, I'd much rather have been diagnosed with Lyme than with depression. I'd rather have taken months of antibiotics than months of antidepressants.

I read more about Lyme. In Peggy Munson’s blog I found this quote from Amy Tan about her experience with Lyme:

"By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about. I did not possess any of the skills necessary to write fiction, for I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative that had to span four hundred pages and keep taut multiple intricacies of plot, characters, and thematic imagery."

Again, sounded like me.

I even wrote an e-mail to Pam Weintraub, who wrote Cure Unknown and asked her what I should do. I’d been taking oral doses of doxycycline every day, but Dr. Lerner wanted me on IV. The only way to do that was if I moved into a hotel in Detroit for six weeks, he wanted me in the area. I didn't want to do that if I didn’t have to. But Dr. Lerner was adamant and said if it was him or his family, he’d do it. Pam Weintraub wrote me back and said that IV doxycycline made a huge difference for her son in a way that oral did not.

I was going to do it. My mom and I drove up to Detroit and looked at different hotels. Then I though I should get a second opinion from another “Lyme literate doctor”, ideally someone who would set me up with IV antibiotics at home. I made an appointment to go to Mt. Kisko , NY and see Dr. Daniel Cameron, the only doctor I’d read about in the book who was still treating patients. When I got my blood work back from him, it said I did not have erlichia, but I did have Bartonella and two others, I forget which. Now I was getting an idea of how unreliable these tests were. Still, I continued on oral doxycycline. Dr. Cameron didn’t think I needed IV anything and that was fine by me. Later we switched to Cipro.

After a few months of daily antibiotics, I didn’t feel much different. My skin was beautiful and clear, but my eyes were so sensitive to light I couldn’t look out the window. I’d heard this was a symptom of lyme disease, but to me it seemed to get worse with the antibiotics. I wondered if it was a “Herxheimer Reaction”. When I asked Dr. Cameron if the antibiotics could be causing light sensitivity, he said no. But it sure went away quickly when I went off them.

The whole lyme thing was just too complicated. If you’ve read Cure Unknown you have some idea of how hard it is to beat lyme with antibiotics. I went back to CFS. I heard about Dr. Enlander and was able to get an appointment with him quickly and start on hepapressin. A few weeks later it was time for the appointment with Dr. Chia I’d scheduled 6 months earlier. Dr. Chia is the only CFS specialist I was referred to by an actual doctor. When my endocrinologist couldn’t find anything wrong with me she had said, "Dr Chia is doing some wonderful things for CFS."

I liked Dr. Chia, but I didn’t do his protocol, the oxymatrine. He said since I was on hepapressin it was basically the same idea, I should keep it up, and if it didn’t work, try the oxymatrine. I still have the prescription, but by the time I finished the hepapressin I was already moving on to Dr. Cheney. During my visit I told Dr. Chia how I’d been on antibiotics for lyme disease. He told me the thing about lyme disease is that anyone will feel better when you put them on antibiotics because they are anti-inflammatory.

My mom did call my doctor when I got a tick bite, but the doctor said the same thing then they say now. If there’s no rash or flu symptoms, don’t worry. So we didn’t. For a long time I thought that if I had gotten antibiotics early on I might never have gotten sick. Now I’m not sure.

I forgot about Lyme for awhile, but when Under Our Skin came out I still wanted to see it. I went to the LA premiere in a little theater on Wilshire. I’m sure there were less than fifty people there, probably less than forty. I cried through the whole thing. I think a lot of the audience did. I don’t remember much about it now, but I walked out with a green rubber bracelet. If I ever get another tick bite, I’m going to want some doxycycline, just in case. But I don't tell people I have lyme anymore, I'm in the CFS camp.

Night Owl/Stem Cells/Resilient Amoeba

2010-05-26T15:00:00.000-07:00

5/26/2010 01:18am

Nocturnalism is only a problem if everyone else in the world is not nocturnal.

I meant to write this blog yesterday afternoon. I knew what I wanted to write - not at that exact moment- but I knew it was there in my head somewhere. I'd thought about it before, and I just needed to concentrate and find it and get it all out. I tried to sit up at the computer, but after two minutes or so I was lying on the couch and all I could think about was how warm the sun was. I tried again to write this morning but that didn't happen. Then I was really going to write this evening but I couldn't, I couldn't do anything. Now that it's 1 am and my head is clear and I'm able to write I can blame my failed attempts on one of two things: brain fog, or nocturnalism.

I think there was a time I thought nocturnalism was my whole problem. I thought it was just my unfortunate natural rhythm, and how would everyone else feel if they were supposed to sleep all day and work all night? Probably the way I did.

In college after I'd gotten enough studying done, I'd still stay up all night looking up things that interested me in LexisNexis, and one thing that interested me was nocturnalism, which sadly is not a really a word but should be. I remember reading an article by a woman who had been trying to write a book, and one day she realized the only way she'd ever get it done was to give into her natural tendency to be nocturnal. Once she "gave in", She went from barely writing a paragraph a day to writing pages and pages through the night. She woke up in time for dinner with her family, started writing when they went to bed, had breakfast with them, and went to bed again after they left for school. I wondered if that was the only way I would ever get anything done in my life. My noctural friend and I fantasized about a college where we could take classes from 5pm-5am.

Lately I've been laying the blame for my "day-night reversal" totally on the CFS. It's a typical symptom, it's a sign of impending adrenal collapse, etc. But the other day when I was repeating to my dad what my acupuncturist had promised me, about "naturally feeling more alert during the day and more like sleeping at night as I got better", when I was complaining about my nocturnal tendencies, Dad laughed and reminded me that the tendency never went away for him. We're both congenital night owls. Laying awake in bed has been a part of my life for as long as I can remember. I used to make up lots of games to try and fall asleep. I counted slowly in my head up to the thousands. I read hiding under the blankets with a flashlight. I thought of this today when a friend told me she was thinking of trying melatonin. (I've tried it, didn't do anything.) She said that two different families she babysat for gave it to their little boys. Kids today! Why can't they hide and read like we did back in my day, instead of bothering their parents with their awakeness so much that they are forced to drug them? ("Awakeness" also needs to be made a word.)

I definitely get the feeling I should be ashamed for my nocturnalism, that it's abnormal and immoral and unproductive. I feel guilty staying up to write this, despite the fact I couldn't sleep anyway no matter how hard I "tried". And what about "morning people"? Life was always so much kinder to them, particularly in middle school when the bus came at six am. I remember telling my friends how I kept getting to the bus stop later and later because it was getting harder and harder to wake up in the morning. One girl said, "Really? As soon as I open my eyes in the morning I want to get out of bed. I don't get it - wanting to stay in bed when you're not asleep anymore?" It was a critical moment for me, realizing that there were people like this out there, and that I hated them.

"Dr. Byron M. Hyde, a physician who studies CFS in Ottawa, Canada, has suggested that major sleep disturbance may be one of the very first symptoms of CFS to develop."*

That's my segue from the sleep problems part of this blog to the CFS part.

I've decided to put off the stem cell decision for awhile. I'm going to make an appointment to see Dr. Cheney again in October. Then it will have been one year of treatment with cell signaling factors (CSF's). My echo terrain map showed improvement in April, after six months, so maybe it will be close to normal in another six. And in the mean time maybe I will start feeling "functional improvement."

From Dr. Cheney's 2008 article:

Through the first six months of therapy, there was no significant improvement in functional measures (KPS) but some notable changes were seen in both echocardiography (drop in IVRT, p < 0.00006) and in impedance cardiography (rise in stroke volume, p < 0.00004). However, during the next six months, notable improvement was reported by some patients attributable, by most participants, to the heart/mesenchyme porcine extract.

There was a time when I thought that I might as well shoot myself up with placental stem cells, I'm already lathering up twice a day with CSF's from bison. But it's not the same thing. Dr. Cheney has really done a good job making the case for his confidence in the safety of the stem cell transfusions, but I'm still going to wait. My dad read the rest of Stem Cells for Dummies for me (I'll get to it soon) and he said "On a scale of +/-1-10 I went from + 5 in favor to -8 against using Stem Cells for CFS."

The main impression I got from talking to him is that it's still a highly experimental treatment and there's a lot that isn't known about stem cells. I'd already decided to put off my decision before he told me this though. I'm not ready. I need more information, and if there isn't any, I need to more time to mull over what I've got, though I'm well aware I shouldn't mull too long. My one year CSF anniversary seemed like a good deadline.

I think Dr. Cheney is going to make the human derived CSF's available soon. HPE- Human placental extract. They're from the same source as the stem cells you'd get in Panama, but it's not the cells themselves, just the signaling factors. Not sure what exactly that means, except that it probably won't work as well as stem cells, but I know at least one patient on the trial has made a huge improvment on the echo cardiogram, although without any "clinical improvement." But that might come in time.

In the words of CFSpatientadvocate:

In regards to this last item Dr. Cheney related his enthusiasm about a new gel that he has made from afterbirth material. Citing studies on hamsters, Cheney described a process where non-stem cell material is extracted from stem cells and injected back into the hamsters, curing them as if it were stem cells. Dr. Cheney has made a similar gel from human afterbirth that gets a very strong reaction on his Echo machine, much stronger than any existing CSF. He is very excited about this.

I do wonder if I am being too cautious, especially when I see other people I know a lot more willing and ready for stem cells than I am. But I just don't want to do it if I don't have to and I'm hoping, maybe naively that if I keep up with the CSF's, the human CSF's, acupuncture, herbs, rest, pilates (which is supposed to strengthen the immune system) the the right diet, and even the right attitude, I can get well without stem cells. I've also been a little more open minded about ARV's and I've been reading treatingxmrv.blogspot.com. At this point though I think I'd still try stem cells before ARV's, but who knows.

If there is a real chance to be healthy again, I will not let it pass me by.

Some long awaited test results:

Mold: On the ERMI scale of 1 to 4, 1 being safe 4 being dangerous. My apartment got a 1.9. I'm in the moderate zone. So I don't think I'll be moving...

Amoeba: I tested "equivocal" twice by saliva. Then I did two weeks on the really strong antibiotic Alinia, which I am still recovering from, GI-wise. Guess what? My test for parasites went from equivocal to positive! How did that happen? For now the doctor is saying maybe we tested too soon and I should do the test again. He's sending me a kit. If it's not negative this time I don't think I'm going to do the antibiotic again. My digestion has actually been pretty decent.

Thyroid: Still don't know if I have tertiary thyroid syndrome. My blood test (TSH, T3, T4) results were in the normal range but it's the urine test results I am waiting for.

Most annoying symptom lately: Burning sensation in the back of my throat that is making me want to constantly drink massive amounts of water.

*Neenyah Ostrom, America's Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link to AIDS

"Remember, insomnia is only a problem if you have a job or a reason to live."

2010-05-18T06:03:00.001-07:00

I've been busy. Sure, people with CFS can be busy. When you need 12 hours of sleep each night, if you have one thing to do, then that day, you are busy.

As part of my quest for perfect health and immortality I thought it was about time I started exercising. Nothing aerobic of course, but something to at least "get moving" and "circulate the lymph" and maybe even reverse "the downward spiral of deconditioning" I'd been in ever since I was pretty much bed-ridden those six months.

I put it off for awhile because I wanted to find the perfect physical therapist or personal trainer, and a few months ago I did. Except she's not actually a physical therapist or a personal trainer; as she would say, "Animals have trainers, people have teachers."

Last week I had three hour and a half sessions. I plan on doing three this week too. I almost didn't make it this morning for my 2:00 appointment. I was still in bed at 1:30 when she called and asked if I could come at 2:30 instead. "Sure, no problem."

Her studio is right in my neighborhood, it's like a eight minute drive, (though if this wasn't LA it'd be a three minute drive) any longer and I could never keep it up. But the coolest thing about her is that she had CFS. I was skeptical at first, but I believe her now. I think she was skeptical of me too. We'd both met people who like to say they have CFS when they don't really.

She's largely recovered now, after 20 years. She works, takes long walks, takes out her own trash, cooks, shops, but still is careful not to take on too much. She attributes her recovery mostly to juice fasting. She wants me to get into it eventually, but I'm wary. I could say she is an inspiration, "If she recovered than so can I!" etc, but that's not how my mind works.

I did make it to my session today. It really feels good to be exercising again. Sometimes it feels like I'm working really hard, holding a lunge for so long my legs are shaking and I want to cry, but I've never been sore yet, so we aren't working too hard. We haven't pushed my limits, at least for my muscles.

I'm afraid I'm pushing some kind of limit though. It's 5:00am, I'm awake, and I feel fine. No desire to sleep at all. I wish I felt this good during the day. I do actually feel some kind of "energized" after a workout, but it isn't useful energy and it doesn't last long. I'm afraid I'm approaching serious day-night reversal again. I feel like I'm in school and it's the second week of the semester. Insomnia is so much less stressful when you have nowhere to be in the morning. (Or afternoon...) But I've scheduled physical therapy Monday, Wednesday, Saturday and acupuncture Tuesday and Friday. Thursdays and Sundays are my only days off.

I hope I get some sleep tonight, can wake up at noon, brush my teeth, take my medicine, get dressed, eat something, and drive myself to acupuncture, or call and ask a friend to drive me if I'm too brain-dead. Brain-fogged...

I don't want to give up on the workouts yet though. I'm already getting stronger. When I bend down to open the lowest dresser drawer, I stand up again without even thinking about it. There's a lot of little things like this that are tremendously encouraging. I'm hoping eventually it will really help with my upper back and shoulder pain, and maybe some of the pain, tingling and numbness in my arms and legs.

Maybe I should cut back to two times a week, but I'm going to try for three a little longer. This is my chance to really learn something, and thus feel a sense of accomplishment which can translate into satisfaction and happiness. It feels so good to be immersed in something to learn, to have a teacher again.

But it's not worth it if it pushes me back into nocturnalism. Nothing is worse than not being able to wake up morning after morning when you have somewhere you're supposed to be. Already my mornings are getting shorter and shorter. I have a feeling tomorrow I will jump out of bed at the last minute, take my medicine, and run out the door. I'll be a few minutes later, and I'll hate it. I won't shower, I'll feel dirty all day. And then there's a good chance on Wednesday I will wake up just enough to call and say "I'm not going to make it in today," and go right back to sleep until three or four pm. Or I might be too tired to call and just be a no show.

I know this pattern well. It's why I haven't tried to go back to school this year again.

I hate it when it comes to this. But it's either this or be pre-emptive by scheduling nothing, and I can only do that for so long too. There's still a part of me that doesn't know it's sick. It's been through a lot of disappointment.

I used to be able to deal with the day-night reversal a little better. I drank a lot of coffee and red bull, that helped.

I wrote this in early 2007, a few months after I dropped my classes mid-semester for the third time, to describe my "Denocturnalizing" process. I knew something was wrong with me, but I was a few months away from learning about CFS. I wasn't exactly blaming myself anymore, I'd realized by now my sleep problems were not ordinary, were beyond the powers of human discipline, but I still felt a sense of stigma.

Up early? Or up late?

People ask me this a lot even though they must already know the answer. Gas station cashiers ask when I come in at 3am to buy coffee. For all they know I could be up starting on some fabulous road trip, or my job as a morning anchorwoman. For all they know.

The coffee shop down the street opens at 6:30. I was there by 6:50. Apparently they've had espresso-banana smoothies all this time and I never knew it. So I had one this morning for breakfast. They're very good. I'll have to add it to my Map of Excellent Drinks. (The best bubble tea is in Cornell, the best chocolate milk in Syracuse, mocha colas are in Ohio Arabicas, etc.) There was one other person there at that early hour. She was wearing bulky headphones and typing on her laptop. (Non-macintosh)

More people started coming in. By the time I left at 8:30, there were about six people sitting around with coffee and newspapers and laptops. I watched in amazement as they entered and exited, probably on their way to their jobs. I focused particularly on this tall bald man across from me reading the paper. He'd been there at least a good half hour. I wondered, does he do this everymorning? And I imagined myself asking him,

"Do you do this every morning?"

...and the conversation took off in my head,

"Do what?"

"This! Get up early, shower, put on a warm looking cream colored sweater, stop at the coffee shop, drink a red-eye and read the paper for a half an hour before you go to work?"

"Oh. Why, yes I do, more or less."

"Fascinating!"

And then I'd turn to the girl on her laptop,

"Do you do this every morning?"

She takes off her headphones when she sees me speaking to her.

"Excuse me?"

"Sorry. I was just asking, do you do this every morning?"

"Do what?"

"Wake up"

"Yes I do. I get up every morning before I go to my job at the hospital."

"Interesting."

"Why? Don't you wake up every morning?"

"Me? Certainly not! I haven't woken up the last four mornings."

"What do you mean you didn't wake up? What did you do?"

"Just kept sleeping right through until the evening. Eventually I would get out of bed, but by then I'd have been merging in and out between consciousness and dreaming for so many hours that you could hardly call it waking up. That certain verb requires the action of the transition from one state of mind to the next to be completed within a half an hour at the most."

"I guess."

"I'm only here because I've been awake all night and need to remain so for the rest of the day."

"Ok well, good luck with that."

And I sleepily journaled this a few months ago. I'd just seen the new Alice in Wonderland:

"Why, there's only one way to get to tomorrow, and that's sleep. Sleep is the only way to get to tomorrow."

"But I didn't sleep at all last night, and here I am."

"Are you?"

Title quote from an old Onion article.

Endless Vacation

2010-05-10T13:28:00.000-07:00

I'm supposed to be making a decision right now, aren't I? Something about stem cells?

It really has been on my mind constantly, and at one point I had almost decided: the risk is minimal, the potential benefit is immeasurable, so it isn't a matter of if, but when, and if it's only a matter of when, isn't sooner better than later?

"If not now, when?"

But there's still a part of me that's afraid of the unknown. The unknown being, "Who's cells are these anyway? And does even it matter? Does it? Even a little??" I decided to conquer my fear of the unknown with knowledge. I decided to acquire this knowledge by going to Barnes and Noble and purchasing a copy of Stem Cells for Dummies.*

I've never liked any of the for Dummies books. I don't have a lot of time (energy) to spare so if I'm going to read a book it has to be not only informative but well-written and preferably enjoyable. That has not been my experience with any of the Dummies books. But after googling Google Books and scouring Amazon Listmania I came to the conclusion that this was probably my best bet. There just aren't many books about stem cells out there, at least not in the context I'm looking for. If you want to find a book about embryonic stem cells: ethics, morals, dreams, possibilities, then you have plenty to choose from. But adult stem cells, specifically "cord blood" stem cells, not so much.

I figure I should put some kind of deadline on my decision, like, a month from now, whenever now is. I haven't actually done that yet. June 10th?

So far I have only gotten through the first chapter of Stem Cells for Dummies. That was three days ago. I read it in study mode, pen and highlighter in hand, ready to reread what I didn't understand, to find the most important points.

So far, this is what I've taken to be the most important points:

1. It's funny there's this sudden big fuss! Stem cell research is hardly new!

2. However, we hardly understood anything about how stem cells work at all!

3. All stem cell treatments are highly EXPERIMENTAL and DANGEROUS

4. Beware of "patient testimonials" and "the placebo effect"

I put the book down after the first chapter and haven't returned to it because it made me really sad. It's making me "face reality", and it's depressing.

There's this whole delicate balancing of dichotomy one has to deal with when one is living with chronic illness: on the one hand, life sucks. On the other hand, you have to make the best of it. I worded it broadly like that so that healthy people can relate. The thing is though, I don't think they really can. When you are sick you can never forget the bad part for too long because no matter how long you can go walking around thinking positive and looking on the bright side there will come a day when you are in so much pain you can't get out of bed, you can't think, you can't read, you can't talk, you can't do anything to take your mind off the fact that you are really really sick and may never get better.

You could liken this problem to this article today in The Onion, imagining what it'd be like if the prolific political dissident Noam Chomsky tried to take his mind of things just for one day:

"Sources said Chomsky took what was supposed to be a refreshing drive in the countryside, only to find himself obsessing over the role petroleum plays in the economic and military policies that collude with multinational corporate powers."
"All right, all right," the noted critic and philosopher said, "I'm going back home, writing one—just one—reasoned, scathing essay, and getting it out of my system. But then I'm definitely going back to the park to walk around and just enjoy the nice weather. I'm serious."
"Because there's got to be more to life than the way that wage slavery strips the individual of his or her inherent dignity and personal integrity," Chomsky continued. "Right?"

For a while there I thought I should be miserable all the time. Anger, depression, sadness, they have a purpose - they motivate you to change. But eventually I realized I could be happy and accept my situation without losing the will to keep trying to change it. I've gotten pretty good at fooling myself into thinking my life is not so bad. After all, the world is full of misery, suffering...wage slavery. Why should I be an exception? All and all, life is ok.

But then here I am holding a book that might as well been called Stem Cells for the Desperate. I'm reminded I have a terrible disease and that yes, things are pretty bad. In gleefully thinking ahead to what I would do if I became a "functional cure", wondering which college I would go back to, what I'd major in, I'm forced to remember how sad I was, how much grief I went through, having to give these things up in the first place.

On the night I had the bad insomnia, before I wrote a blog, I wrote a lot of other things including a list of the happiest times of my life. There were no rules for the list except it could only consist of the first things that came to mind. I came up with twelve, paused, thought a little more, and ended up with twenty. Some were single days or events: an awesome road trip, the time in 7th grade I stayed home sick by myself and spent the entire day on the internet. (Sounds totally ordinary and even tedious now but at the time it felt like the biggest, guiltiest most wonderful indulgence of my life.) Most items are longer periods of time: freshman year in high school, freshman year in college, the six months I spent learning guitar, "all of childhood."

When it was done I realized they all fell into two main categories, times I was working really hard and times I was on some kind of "vacation." I also realized that they pretty much stopped after 2004, the last year I was well enough to work a full time job or complete a semester of college. This is what I frantically typed in my hypergraphic state:

Sadly there are no happy times after 2004, except a road trip or two. That’s six years of unhappiness. No offense to the people in my life at this time, it’s not you, it’s the disease. Fleeting moments like awesome concerts (Faint/Fever, Hives, Dandy Warhols, Momus, Divine Comedy, Phillip Glass, Terry Riley), good books (Middlesex, Pride and Prejudice, Strange and Norrell, Outliers...) discovering new favorite bands, listening to good music, the time ____ _____ kissed me on the cheek, don’t make it. Notice those are all passive experiences. They enrich real experiences, but can’t produce real happiness themselves. CFS makes you settle for a life of passive experiences.

Half of these are about working hard, half of them are about play, travel, vacation, relaxing, etc. With CFS you can’t do either. Also notice there is nothing to do with food there, even though I love new food, new restaurants, etc. But I don’t think back to when I used to come home from school and zone out in front of the tv and eat a box of goldfish crackers as a particularly happy time. So even though there’s been some things that you’d think would be on the list...World Cup Trip, Alaska Trip, learning IPA (I almost put that one), they just didn't make it because they occurred after 2004.

Work hard, play hard. I first heard that expression from my Dad my first year in high school. Now I can’t do either. Sleep hard, try hard, see no results...life is hard. Everything in vain. Pain, insomnia, alienation. Denial. Not things that make humans happy. So what have been the happiest times these last five years? I could pick them out, but, they wouldn’t really be happy times, just “happiest” in bad times. I don’t think I’ll ever be happy again unless I can work, learn, and play. All I have now is tiny pieces of these old things. Except the internet, I can spend as much time as I want on the internet, but it’s not a treat anymore, is it?

I came to the conclusion that being unable to work or play, I was living in a kind of purgatory, and the only way I would ever know happiness again was to get healthy enough to work (or go to school) and the only way to do that was with stem cells.

And yet, I'm still not sure. For one thing, there's no guarantee that if I got the transfusion I would be healthy enough to go back to school. There's also no guarantee that even if I feel better enough to go to school for one year, even just part time, that I'd still be healthy the next year. It might wear off. I imagined a life where I was going to school part time in the spring and fall, and instead of spending my summers at internships or abroad, going down to Panama every summer for a reboot, for new DNA, and then spending three months regenerating in my cocoon so I could go back to school in the fall. At that rate, if I didn't do a double major or any extra electives, theoretically I could graduate in six years and it would only cost $60,000 + tuition. Hurray!

I still haven't totally let go though of the myth of stem cells as a magic bullet. Maybe I'd only need one transfusion and I could go back to school full time. Who knows. And if I believe that, then I also have to believe that if I don't rush right out and get them, it means I am afraid of life, that I don't want to go to school, that I don't want to get better.

I know that's nonsense, but, sometimes it's how I think. It's stories like this from Dr. Cheney that make me think this way: The only person who didn't feel any difference from the stem cells was a 56 year old lawyer who was working 60 hour weeks and felt terrible. He wanted to work 60 hour weeks and feel good. (He still had CFS, it's a wide-ranging disease.) When I heard that I did not think, "Whoa, that guy is a workaholic who's being way too risky and using stem cells like they're the fountain of youth." I thought, "Damn, this guy loves life way more than I do."

And then when I found out they were now doing intrathecal transfusions, (transfusions into the spinal column) he said there had been six so far just last week, but there were six people down there now, and when they heard how great the other six felt they all said they wanted intrathecal transfusions too! Who are these people? Don't they know about decision trees???

I can't even think about intrathecal transfusions right now. As I understand it, injections into the bloodstream are pretty safe, your body knows what to do. The brain on the other hand, is stupid. That's why when embryonic stem cells are transplanted in the brain they just multiply and multiply and you get tumors. Is it the same with adult cells? Is it the same when they go into the spinal column? I don't know, and I don't mind waiting a little longer to find out.

I'm always wary of being thought a malingerer. I assume everyone with CFS is. By 2006 I had started and dropped out of three consecutive semesters. However, I had never heard of CFS, I still had no abnormal test results and no other diagnosis than "depression." Also, I wasn't the only kid to ever take a semester off. I knew lots of people who had dropped out mid-semester or planned some time off to goof off or find themselves or whatever it is angsty, young, thoughtful people do. For awhile I thought I was one of them, but by 2006 I had realized there was something really wrong with me even if the doctors couldn't find it yet, that no one else was this tired. It took my friends and family a little longer to come to this realization though. There was one particularly painful instance, when my best friend, who had taken some semesters off herself, but was now pushing through to finish and get her degree, essentially told me that I'd been on vacation long enough, and it was time "to stop fucking around and grow up." Is that what she thought I'd been doing all this time? I told her, rather meekly, that I didn't think of this as "time off", that I thought of it as "sick time." She just rolled her eyes and it was the end of the conversation.

I think it's in Stricken, can't find the exact quote: a teenage boy who gets ME/CFS and is out of school for the whole year. His friends think it must awesome to stay home from school and play video games all the time. "Yeah it's nice, for a month, but not for nine." After nine months, even if he isn't anxious to go back to math class and homework, he at least must be aching to ride his bike around the neighborhood. And then the longer you're sick, the sicker you get...

To anyone who thinks CFS is an endless vacation, I would invite them to think so in the context of the Ramone's song, Endless Vacation. You only need to listen to the first few seconds to get the picture.

*This is not meant to be a review of Stem Cells for Dummies, like I said, I've only read the first chapter and skimmed through the rest. Even though I am disappointed that there just isn't enough of the kind of research I was looking for out there, so far, I actually think this is a really well written and informative book, despite not mentioning Chronic Fatigue Syndrome once in it's 360 pages, like everything else I've read about stem cells.

Insomnia/Hypergraphia

2010-04-30T07:32:00.000-07:00

7:33 am.

I got into bed nine hours ago, haven't slept at all.

It's times like this I thank god I'm unemployed. There's been many, many times I've gone to a job or a full day of classes on zero sleep. Sleep deprivation is a terrible experience. There's a buzzing in the head, inaudible, but still a buzzing. The ability to concentrate completely dissolves, and you feel alone and lost in your own head all day. The strangest and probably worst thing is the sensation of feeling dirty and tingly all day, even after showering. I can brush my teeth three times before I leave the house and my mouth still tastes acidic. And my teeth throb like they all have cavities.

It's a great relief to know I don't have an assignment due or a clock to punch. I do however have an acupuncture appointment. There's no way I can go. It's a new doctor so I don't know their cancellation policy, but I have a feeling it's 24 hours. I had one doctor, my regular internist, who was very nice. He never charged me for missed appointments. "It'd be like if I were treating you for headaches, and you said, I can't come in because I had a headache!" I loved him for that.

The first symptom of my CFS that was noticeable to my friends and family was the excessive sleeping. I'd amuse my family by sleeping until three pm. Then I'd shock them by sleeping until six. Then I'd really confuse them by sleeping until midnight.

Among my family I just had a reputation for being lazy, then depressed. Among my friends I was just known for really liking sleep. I didn't understand it, I couldn't hide it, so I did what I thought anyone would have done and I bragged about it. "14 hours you say? That's nothing. I slept 21!"

Still, I was surprised that my mom was surprised this year to hear me tell a doctor I had insomnia. "How could you have insomnia? You sleep all the time." It did seem ridiculous. But I explained to her that I didn't just have trouble waking up, I had trouble falling asleep too.

I remember once, during a long period of insomnia, leaving up an away message on AIM, "wish I could sleep" and my roommate, annoyed by my chronic oversleeping, responded harshly, "ha! I think you sleep enough"

The insomnia, the excessive sleeping, the day night reversal, this might be the most miserable part of CFS for me because it's so alienating. When you are nocturnal, no one, Dennys and iHop excluded, tries to accommodate your sleep schedule. I've never even had a sleep study. Two labs said they couldn't do one on me, that I should come back when I could sleep at night. "But if I could do that I wouldn't need a sleep study!" but they didn't seem too concerned. "We can't change our schedule just for you."

Even now with the CFS diagnosis, the stroke volume in heart failure range, the XMRV positive, the dysautonomia, my parents still give me the tough love treatment in the morning: "Come on. Sometimes you can get up if you want to! You got up yesterday." "Come on, Grandma's waiting, don't disappoint Grandma!" It doesn't matter if my doctor told them that sometimes it is physically impossible for people with CFS to wake up. They still treat me like a sleep-a-holic. I had insomnia after my appointment with Dr. Cheney last week. I had less than two hours sleep before they called me to leave for the eight hour drive home. Normally I need between nine and twelve or I can't wake up, seven absolute minimum. After hours of intermittent begging and pleading on both ends, they left without me and in a text message, told me to book a flight when I woke up. I couldn't imagine booking a flight, changing planes, the shock of it shook me awake, so I was able to call them and ask them to come back for me.

I have a lot of bad stories involving my parents or sister or roommate trying to wake me up. I don't like to think about them though. But every time someone persists trying to wake me up, in my half dreaming state I think about all those times.

Dr. Cheney says day-night reversal is common for CFS. It's also a sign of impending adrenal collapse. I have at least one online patient friend who's stuck with it. The last year and a half though it hasn't bee so bad. I got some sleep hygiene info from a sleeping clinic and it actually helped. I stopped reading and using my computer in bed. The bed is only for sleep now. I try and go to bed at the same time every night, that's the hardest part. I don't keep a clock in my bedroom so I can't worry about the passing time. I just set my phone alarm. If I think a lot of time has passed and I'm not asleep I get up and read for 20 minutes then get back in bed again. Sometimes I'd do this on and off five or six times before falling asleep. Tonight I wasn't so good though, there was a lot of lying awake.

Today is going to be a terrible day. I won't be able to read or do anything useful. TV will hurt my eyes and ears. The sun is harsh and intrusive. I could try and sleep when I can...maybe in a few hours, but then I'll be up all night tonight again.

I definitely won't be doing anymore writing today. The only reason I pulled this off...I don't know. My mind's been racing with thoughts all night, most of them just fragments. I guess I just wanted to write about this so much I was able to finish the fragments and make them a blog. Tomorrow though I might come back and find it's inscrutable, like scribbled notes on a nightstand.

There's a coffee shop in Hollywood called Insomnia Cafe, presumably because it's open until 4am. I loved it, back when I thought it was OK to go out and drink coffee at 4am. But I also wondered if it wasn't insensitive to real insomniacs. Insomnia is a terrible disease and co-opting it to sell coffee all night struck me as cruel and irreverent. These things happen though. Some diseases just capture people's imaginations. I wonder if there is a bakery somewhere called Diabetes, a tobacco shop called Emphysema, a bar called Cirrhosis. I saw on Peggy Munso n's blog a billboard in Australia that used Chronic Fatigue Syndrome to advertise an island vacation.

After I read Dorothy Wall's CFS memoir, I went to her website and saw she'd written a review for an insomnia memoir: Insomniac by Gale Green. I haven't read it yet but I've been meaning too, it looks good.

One of my favorite books, is The Midnight Disease by Alice Flaherty. It's where I first learned the term hypergraphia: the overwhelming urge to write. I probably found out about the book during a fit of hypergraphia by googling "I can't stop writing" at 2am. I ended up reading this article by Dr. Flaherty. As I suffered from insomnia and hypersomnolence, so too had I suffered for years from spurts of hypergraphia and bouts of writer's block. I found this passage particularly compelling:

The thing I have been working on for the last 15 years is the basal ganglia. When I first started working on them, most people thought they were purely motor -- they controlled when your arm moved, and motor motivation in terms of getting your feet started when you walk up the stairs. It's now very clear that it extends to cognitive issues as well, and to emotional ones, and they're all very tangled up in this part of the brain. I was seeing this in my patients with Parkinson's. For example, two weeks ago a patient came in who was a [newspaper] columnist and her first symptom had been writer's block -- then depression, and then Parkinson's. It wasn't a coincidence. It was the same disease affecting different parts of the basal ganglia. We were talking about her writer's block and she began to cry, because no one had taken it seriously before.

I cried, because I had never thought to take my writer's block seriously. All along it had been so obvious that what I meant by writer's block--the sudden and confounding inability to get words out of my head and onto paper, was not what everyone else thought it meant--a creative block, lack of ideas, simply being unable to think of what to write. I then became convinced I was in the beginning stages of Parkinson's. It didn't matter that my doctor told me I was too young. "If you had Parkinson's I'd call the medical journals!" Even when I learned about CFS, I still thought it was just a stop along the way. More research and my visit with Dr. Cheney finally convinced me otherwise. I had a slightly elevated ANA, and I asked about autoimmune diseases, and he said:

“You know we’ve been looking at autoimmune issues for close to 25 years because a lot of times when people march into doctors with this kind of symptomtology they’ll get worked up for mixed connective tissue dissease and they’ll start looking at ANAs antiDNAs and sed rates. Pretty soon they scratch their heads and say, 'Well you kinda fit…." but you can never see something in my opinion that meets the criteria for a mainline autoimmune disease." “We’ve been waiting for lupus to erupt out of this diseae for 25 years, we’ve never seen that.” “Never happens” "We’ve been waiting for rheumatory arthritis, never happens.”

Once in a hypergraphic insomniac fit of desperation I found Dr. Flaherty's e-mail address, told her my story, and asked for her opinion. She replied with a very nice but ultimately disappointing letter--she urged me to try mood stabilizers.

I actually once saw someone reading The Midnight Disease at Insomnia Cafe. I usually don't talk to strangers but I was sure I'd found a kindred spirit. It turned out though that she was a psych major writing a paper and the book just happened to catch her eye at the library. I went on and on about how much I loved it, how much it meant to me. She said she just liked it because it was so easy compared to all her assigned reading.

At least this took up almost two hours. Just twelve more to go!

*Edit, called my doctor's office and they were very nice about rescheduling. When I said I thought the herbs he gave me might have caused the insomnia they said he would call me today to talk about it.

I've decided to take my morning medicine and just make a go for it. Not sure what I'll do though. Maybe just keep typing my thoughts. It's comforting. I wish I had a rug hooking kit. Maybe a jigsaw puzzle...suggestions welcome!

Time out

2010-04-25T21:26:00.000-07:00

Stem cells, stem cells, stem cells. That's all I've been thinking about this week and I've finally blown a fuse in my brain or something. So there will be no more stem cell talk tonight. I just spent over an hour trying to hash it all out with my Dad. He said I should make a decision tree. I mostly just cried. Finally we decided that the best thing for me to do is just forget about it for a week, stay off the forums, stay off wikipedia, and then come back to it and see how I feel. In the mean time, I'd been e-mailing with Joey who blogs at Dashed Hopes and Measured Steps, and he's done a very good post about stem cells that pretty much covers everything I know and am considering.

To make the distraction complete, my Dad suggested crossword puzzles should take the place of stem cells as the focus of my mental energies. I think that sounds awesome. My boyfriend and I are doing the Crosswords LA Tournament this Saturday, doubles division. So for a week I'm going to pretend I don't have CFS and act like the most important question I'm facing in life is "What is a six letter word for 'not lost'?"

Well, I'm not going to completely forget I have CFS. I'm still going to see that new acupuncturist on Wednesday. And I'm still going to look into some of the things Dr. Cheney talked about:

1. Mold - I should get my apartment checked out by ERMI dust sample

2. Water - He's been testing the IVRT reactions of different kinds of water. The best kinds are "structured waters" like Aqualiv and Penta. But the really best kind is spring water from Iceland. Other spring waters are neutral. The worst kind is distilled...which is all I've been drinking. Oops.

3. EMF's - I need to get a real phone and use a mic and headphones when I'm on my cell. He's also been testing IVRT reactions to cell phones.

He also said I should switch from glucose to dark chocolate as part of my pre-treatment for the cell signaling factors, but I've already taken care of that. :)

The good news is my echo terrain map did improve after six months on cell signaling factors, as expected. My methylation cycle is better, for one. My stroke volume was higher but he said not to get too excited about that, it can vary. If I'm going to feel any change in energy though because of this, it won't be until after the first six months so...anytime now...

I'm going back to LA tomorrow. My mission to have my six month follow up with Dr. Cheney and hang out with my parents for awhile is complete. I might have gone back Friday, but I wanted to stay the weekend because today was my brother's 21st birthday. For some reason I forgot he'd probably want to spend it on campus with his friends.

I guess I wanted to be around for his birthday this year, because last year when my parents asked me to come home for it, I didn't. This same week last year, I had my six month follow up in New York with Dr. Enlander. My appointment with him was Wednesday April 22, so my parents suggested I come home after that for Dave's birthday the 25th. I said I would play it by ear, but I ended up not going. I also wasn't too enthusiastic about my follow up with Enlander. I hadn't noticed any improvement in my energy levels from the hepapressin injections I'd been giving myself. What was really on my mind was Dr. Cheney's upcoming presentation in Virginia, also April 25th, about the results he'd gotten with cell signaling factors and ...stem cells. I was so eager to hear about it I even thought about going from New York to Virginia myself, but I didn't. Instead I stayed in New York and got swine flu.

Well, I can't say for sure it was swine flu, I never got tested, but it was all over the news the day I got it, the symptoms matched, and it was the first time I'd gotten sick in at least three years. I was meeting up with a friend from college I hadn't seen in a long time. "I'd give you a hug," she said, "But I think I'm getting the flu." “Oh, I don’t care!” I said, “I haven’t had the flu in years. My roommates get it, it passes me by.” I thought this was because I’d been eating such a healthy diet, avoiding sugar, drinking vegetable juice every day, but now I believe this was just typical CFS immune response. No colds or flus--just bone crushing fatigue. So I gave her a hug and we went out to dinner. And, as I've said here before, I've had three more flus since then, which may or may not be a good sign.

Incidentally, I also have April 25th marked on my calendar as the three month anniversary of this blog. When I started I didn't know if I'd be able to keep it up that long, but looks like I have. That at least is a good sign.

Stem Cells, Literature

2010-04-18T21:00:00.000-07:00

Tomorrow morning my parents and I drive to Asheville. The next morning we'll meet with Dr. Cheney.

It will be my second appointment. I decided I wanted to see him a year ago when he announced that he'd given some of his patients stem cell transfusions and the results were good. At the time he was only using stem cells with older patients, but I thought it was time to see him anyway.

And by the time I did see him six months later, he'd changed his mind about just older patients getting transfusions. “The problem with the young, they have more to lose but they also have more to gain. Because it makes a difference getting your life back at 25,” he said.

At the time I was 25, now I'm 26. At the time I wasn't sure if I wanted to risk a stem cell transfusion. Last time when I left he said "Who knows, maybe in six months we'll be sending you off to Panama!" and I thought he was being a little hasty, but now it's all I can think about.

Driving home then, my mom said it wasn't worth the risk, and that really hurt me. Not worth the risk? How dare she imply that I had a quality of life, that my life was anything other than unbearable. I couldn't go to school, I couldn't work, I didn't have the energy to take any kind of meaningful action. Why couldn't she see that I had nothing to lose?

Now though I'm a little less extreme and a little more realistic. I don't have much, but I do actually have something to lose. Things are terrible, but they could certainly get worse.

A few weeks ago I was reading Michael J. Fox's book Always Looking Up: The Adventures of an Incurable Optimist. Ghostwritten celebrity autobiography isn't my usual cup of tea but I picked it up from the display table at Borders on an impulse. I thought I could use a dose of optimism from a fellow Incurable. This was last year, I read the first few chapters, got bored, put it away. But a few weeks ago I picked it up again when I was looking for something light to read. I was treated to a quick political history of the early 2000's stem cell debates from his point of view. All the research I'd been doing about stem cells, and I'd completely forgotten that they were being debated all over the news when I was in high school. The part I'm thinking of now doesn't have anything to do with stem cells though, it's about choices.

He talks about his sister, Karen, who has decided to undergo an experimental brain surgery for her severe epilepsy. The family was not as sure about her decision as she was.

My youngest sister, Kelli, later recounted the conversation she’d had when Karen told her the news of her plans.

“Are you sure you want to do this?” Kelli asked. “What if it makes things worse?”

“It can’t get any worse,” Karen replied.

“But still, isn’t the devil you know better than the devil you don’t?”

Typical of Karen, her response was terse and matter of fact.

“You don’t know my devil.”

I wasn't familiar with that expression, "The Devil you know..." but it resonated with me.

The sister had the surgery, and it worked. She spent the next 15 years free of seizures and meds. But then she had a massive brain hemorrhage at the age of 57 and died.

I assumed there was no way to know what the chances were that she still would have had the hemorrhage if she'd never had the surgery, but that's not the point. I don't know what the point is.

A friend of mine from high school is getting her PhD in biomedical engineering, so I thought I'd talk about my decision with her. She said the first question I should ask my doctor is, "What is the risk of cancer?" I could ask him, but I think I have a pretty good idea what the answer is. "We don't know." It's too soon to tell.

I know he thinks it's safe though, that's his opinion. But it's not Nancy Klimas's opinion, who's told her patients not to get stem cell transfusions until more is known about XMRV. I tested positive for XMRV. XMRV definitely means a higher risk of cancer anyway. And then there's this scary quote from Hilary Johnson:

"Why not study something about the disease that is actually quantifiable? Why not investigate why gray matter atrophies and blood perfusion in the brain is remarkably reduced? Or why spinal fluid has protein in it? Or why so many people with this disease get lymphoma? Or have virulent, active HHV6 and HHV6-A infections? Or have severe Natural Killer cell deficiencies? Or are dying in their 40s and 50s?"

Dying in their 40's and 50's. I keep hearing that in my head when I think about this decision. Maybe I'm not so young after all. My life could be half over.

Sometimes it seems like an easy choice, that I should just go for it. Dr. Cheney makes it sound so easy. Just fly down to Panama, see the canal...

"Four days later you're finished, 50 million cells, go home" "One of the interesting things...they sleep for 30 days..." "To me it's almost like they're being reborn" "They say this is wonderful sleep." "Wesley, he slept for about 30 days, then he just got up and went back to school."

Wesley is his stepson by the way, who's case Dr. Cheney kept comparing to mine.

When I told my uncle about it he said it sounded great. "I would love to sleep for 30 days and be reborn." And my friend seems to think I should go for it too. The fact the cells are injected into the blood stream and not into the brain is a good thing. So is the fact that they are adult and not embryonic stem cells. She said that made her feel better.

My gut feeling is that it's safe. But I'm still afraid. It's still experimental. It's still a risk.

So I have been thinking about it a lot but I have not made any decisions yet. I don't know if I'll be ready to decide on Tuesday, or even this month.

I never, ever thought I'd have to be making an important decision like this at such a young age.

In a story, a character is not defined by their age, accent, hobbies, or use of an ear trumpet. That's characterization. How do you show one's character? By the decisions they make.

When I really think about it, I've never made a big, character defining decision. My character has only been hinted at. Sure I've made choices, to move to LA, to go to college in Syracuse, to leave Syracuse and transfer to USC. Trips to take, apartments to rent. But none of those were really bold choices, I kind of fell into or was pushed into all of them, mostly by CFS. If I never got CFS, the biggest decisions I'd ever have made at this point would be where to go to college (there was no if), what to major in, whether or not to go to grad school, and eventually, whether or not to get married and to whom, whether or not to have children. Important, life-altering, but overall, common, ordinary decisions everyone makes and knows that they will have to make.

This is a complicated decision. I could never get into all that I've thought about it here. But actually I kind of already feel like the choice is obvious, that I should just do it. Take the chance, maybe even wholly and finally end this illness that has defined my character for the last ten years.

But I keep thinking about Joachim. Jim and I recently finished reading The Magic Mountain. Jaochim is the main character's cousin. The good soldier. Everyone who comes to the sanatorium (on the mountain) ends up staying longer than they expected. The head doctor keeps saying they need more time to heal. Another six months, another year...then you can go. Most of the characters take this in stride, or embrace it. What's six months? What's a year? That's nothing! But not Jaochim, who is eager to get back to the flatlands and do his duty. Finally he goes, without the doctors permission. He gets to leave the sanatorium and rejoin life, rejoin his regiment. But only for a year. Then his tuberculosis overtakes him and he has no choice but to come back. He over exerted himself, and he dies shortly after his return.

Jaochim could have lived longer on the mountain, but it wouldn't have been the life he wanted. Not that he saw it that way, that's my personal, 21st century American self-centered young person interpretation of it. For him, it is a matter of duty, as a soldier, as a human being. A human being's duty to live, to work, to do something.

Today I was reading Eeeee Eee Eeee by Tao Lin. This quote stuck with me:

Schopenhauer had said that -- that life was to be perceived not as a book you would write but as a book already written, something to be gotten through, so as to detach oneself from suffering, which was an outside thing, really; not actually in the text. Everything was to be accepted.

Tao Lin is a 27 year old hipster, 24 when he wrote this book. This way of thinking appealed to the 24 year old hipster in me too, someone who gets shuffled from high school to college to the job market...and the closest way you have to making your life resemble a novel is to add irony at every occasion. Lin is aware of this too:

"Irony is so privileged," Mark said. "it's what happens when you don't need to do anything to survive--it's when the things you do have nothing to do with survival and you spend forty million dollars to make Steve Zissou and the Atomic Submarine or whatever it's called."

Life is not a novel. You are not the author. It makes sense, until you find yourself at a young age in the surreal position of making a choice that could change your life in a huge way. Then what?

Agh. I shouldn't have asked that question. I don't want to answer it.

Crash or Flu? Or both?

2010-04-12T16:11:00.000-07:00

Yesterday I had my third fever since I started Dr. Cheney's protocol, and my fourth one in the last year. This after about four years of never even getting a cold. Is this good or bad?

Reasons to think it was a crash:

I exerted myself Thursday by going to that lecture. Then, because I didn't feel too bad, I went out again on Saturday. Sunday I woke up with that poisoned feeling. I figured this was my crash, I'd done too much. But it was more than that, I had a fever and chills. My thermometer isn't great, but my temperature fluctuated between 99 and 101.9.

Reasons to think it was a flu:

My outing Saturday was to a children's birthday party. None of them seemed sick, but still, kids and getting sick just go together. Also, My crashes don't come with fevers.

Today I feel better though. The fever is gone. And I'm going to spend the rest of the week resting.

This is when I wish I knew more about CFS and the immune system theories. All I can remember right now is what doctors told me. At my first meeting with Dr. Enlander in November 2008, he asked me if I got colds or flus and I said I used to all the time but hadn't in the last couple of years. He said he found his patients didn't get colds and flus. I started his antiviral treatment, hepapressin (also known as Nexavir) and when I saw him again six months later, I got the flu the next day.

When I first met with Dr. Cheney, he also asked about colds and flus and I told him that I'd been cold and flu free for years, except for bad flu right after I saw Dr. Enlander. He said that could be a good sign, it could mean the hepapressin helped my immune system.

So if it could be a good sign I had one flu, could it still be a good sign I've had three more?

Again, this is where I really wish I knew more about CFS and the immune system, and the innate vs. the adaptive immune system, and all the different kinds of white cells. I never got to discuss it with him, but from the looks of my flow cytometry report ordered by Cheney, 13 out of 15 things checked were in the normal range. Even my "% Natural Killer cells in blood was normal, 8.37 when the range is from 6-20. I'm pretty sure if you have CFS you're supposed to be low on Natural Killer cells. But the % of specific NK cell lysis ("the amount of specific target cell lysis resulting from NK cell action) was a little high, 21.1 when the range is 6-20. The other abnormal result was %T cells in blood (CD3+) 80.65 when the range is 45-76. Not sure what this all means.

There's one other way to view my fever, from a holistic viewpoint. On Friday night, I had a long craniosacral session. My therapist told me that since my lymph had been stimulated I should go home and take an epsom salt bath or dry brush my skin. (I opted for the bath.) I did notice a swollen lymph node feeling on the left side of my throat that night, but it was gone the next day, which was a pretty good day, I went out to that birthday party. Sunday I had the fever. No congestion, no nausea or other flu like symptoms except for a headache. Mostly extra fatigue, chills, and fever. I wonder if it could be some kind of detox, my body fighting off an old infection.

Now that I've written this I'm done thinking about it for now. I'm going to resist the temptation to read everything about t cells and nk cells on wikipedia and just take a nap.

Shore Leave

2010-04-08T20:57:00.000-07:00

It’s been just over a year since I quit school for the last time. This past year has been the first one of my life where I wasn’t in school or working, or looking for a job, or “resting up” so I could go back to school.

If you’re healthy, a year may seem like a long time, and it is! I miss being part of a community! I miss co-workers! I miss homework and exams! If you’ve had CFS or another chronic illness for a long time though, one year in isolation probably doesn’t seem so bad compared to say, twenty.

I’ve spent most of the time right here, where I’m writing from now, in my apartment, on this beautiful but ergonomically disastrous couch. I haven’t been totally housebound, a lot of the time I was able to go to acupuncture two or three times a week. I went to some concerts, the kind you sit down for. I’ve taken some trips. But for the most part, my life is in this room.

Today though I had the opportunity to get off this sinking ship and walk around on dry land. Even though I’m not officially a USC student anymore, I'm still on all the list-servs. So when Paul Frommer, USC professor and creator of the Na’vi language from the movie Avatar, was giving a lecture, I knew about it, and I really wanted to go. I just didn’t know if I would be able to. Last night, I thought, it could go either way. It started at two, and yesterday I woke up at two.

But I did it, I got up in time to take my medicine, eat a quick breakfast, and drive myself the 20 minutes to campus. I was reminded of how long it's been since I'd driven myself anywhere when I saw the dashboard clock was still an hour behind. I was the first time I'd driven since daylight savings.

I was worried I might have to do too much walking. I thought about asking a friend to come with me and drop me off right by the building, then go park, but was glad I didn’t because whoever I brought would have been really bored. The lecture was really technical. Fortunately, the building was right next to a garage, so I didn’t have to walk too far.

I had to drive to the roof of the parking garage, but I got what I wanted, a spot on the same side as the elevator. As I was walking towards it, still a half a length of the garage away, I saw a man getting in hold the door for me. I waved to thank him, because I did want him to hold it. The less time standing around waiting, the better, but I didn’t hasten my pace, which is the polite thing to do. He made a “Well come on, hurry up!” expression, so I took a few quicks steps and pumped my arms a little, to create the illusion of hurrying up, to make a little show of effort, but then I went back to walking. Just the idea of a quick jog made me want to collapse on the ground. I didn't like that I had made people wait for me on the elevator, but it’s a venial sin.

I got there five minutes early, but I was still just the second person to arrive. It ended up being a pretty small group. They must have been expecting a lot more people though, because the organizer quipped, “Afterwards there will be pizza and soda in the lounge, one whole pizza for each of you.” Someone else could have my pizza.

I was expecting the anonymity of a large group, so when that didn’t happen I was a little nervous. I felt like an imposter. When Frommer started speaking he took a little survey, “Undergrads raise your hand,” I didn’t. “Graduate students raise your hand,” I didn’t. “Faculty and friends?” I didn’t. I wondered for a second if I qualified as a friend, but I really didn’t have any friends there. I spotted an old professor, but she didn’t recognize me. She knew me way back when, when I was in her office a lot asking for extensions, but it’d been two years since I took her class and dropped it halfway through. I recognized her during the lecture when she asked a question, and it was a good one, one that I was way too out of practice to have thought of.

Overall I really enjoyed the lecture, I’m glad I decided to go. Some of it involved terms I’ve forgotten, or things I never learned, but nothing was totally over my head. It was exciting to talk linguistics again, or at least be in a place where linguistics was being talked about. I still find myself reading linguistics articles in wikipedia every once in awhile, or looking up other language's alphabets in IPA, but whatever I can do on my own can't compare to being immersed in college classes.

I liked Paul Frommer too. You could tell he’s someone with a lot of energy and a virtually limitless capacity for learning, which of course I admire. Well, covet, really. From his wikipedia entry:

Frommer graduated from college at the University of Rochester with a bachelor of arts in mathematics. He taught English and math in Malaysia with the Peace Corps, and earned his masters degree and doctorate in linguistics from the University of Southern California under Bernard Comrie; his doctorate was on aspects of Persian syntax.

He gave an example of a rule he borrowed for Na'vi from a Malayan language he learned while he was in the Peace Corps. I always thought I would do some kind of teaching abroad for a while, maybe in the Peace Corps. My mind wandered a little during the lecture and I thought about what I’d do if I recovered, would I still do it? I still want to, but I'm more cautious now. Well, afraid. What if, after my miraculous recovery, I immediately contracted some tropical disease and died? What a shame that would be.

After the lecture there was a Q&A. I had a question, but I was afraid everyone else’s questions would be really technical and everyone would think mine was silly. But I stopped worrying about that when the first hand shot up and the first question was, “Did Ben Stiller really speak Na’vi at the Oscars?” The answer was no, though he used one Na’vi word at the end. He also threw in some Hebrew. I waited a few seconds, and when no one asked another question, I raised my hand.

I remember, the last time I was in school, thinking I’d lost the ability to properly phrase good questions, but this one actually went off pretty well. He’d said at the beginning of his talk that James Cameron wanted the actors to speak the language themselves, he didn’t want any electronic voices or anything. So even though it was an alien language, it had to be constructed within the confines of human speech. He did throw in some clicks and glottal stops, which are exotic sounding to English speakers. What I wanted to know was if, creative guy that he was, he had any ideas for things he wanted to do if there were no limits, if the actors speech could have been electronically manipulated.

He seemed to like the question and went on about how maybe they’d have four different voice qualities, or two separate voice boxes so they could harmonize with themselves. When he was done he tagged on, “good question”, I thought it went pretty well, but my body was freaking out. My heart was pounding, I’m sure adrenaline was surging, I could hear my pulse pounding in my ears. My body was acting scared way out of proportion with how I was actually feeling. I’ve never been really comfortable asking questions in front of a lot of people, but it’s not like this was a huge auditorium and they had to pass me a microphone. It was the size of a classroom. I was really shocked at how “afraid” I seemed to be. I took it as a warning sign about how isolated I've been.

After the talk we were all invited for pizza and discussion in the lounge, but I went right back to my car and drove home. It was the longest I’d been out in awhile and I was tired. But it wasn’t just the fatigue, being with all those happy young linguistics students and accomplished professors made me want to cry. I didn’t feel like I would belong, I didn’t have anything in common with these people. As I’m writing this now though I realize that’s not true, we’re all people interested in linguistics, but, I don’t know, I was scared. What if I was talking to someone and they asked something like, “So are you a grad student? Undergrad?” I’d have to tell the truth, which I’m still really bad at. “Well,” I’d say, “I was an undergrad but I had to drop out for health reasons.” “Oh, I’m sorry” “Oh...that’s ok *smile*” and then the conventions of the conversation break down and you have awkwardness. Most people I think, wouldn’t ask, “What do you have?” or “What’s wrong?” but some do. And then it’s awkward because when I say “Chronic Fatigue Syndrome” I never know if they’ll have heard of it before or what it means to them. My biggest fear is that they think it still means “yuppie flu”.

Last year, still in school, when I began to realize I was missing too many classes, when I’d pulled off my first paper but knew I had absolutely no energy to do the second, when I began to realize I would probably have to drop out again, I fantasized about asking my teachers if I could drop out, get a tuition refund, but still come to class when I could, just not have to turn in any assignments, or get credit or a grade. Just learn without stress. I’d be like a ghost in the classroom, my actions would have no consequences. I’d be like a ghost to the other students too -- I used to be one of them, then something happened to me, I was supposed to leave, to move on, but I didn’t; I stayed, like a ghost. I am like a ghost, and today I haunted the campus. At least I didn’t scare any students.

New ME/CFS Documentary

2010-04-07T18:52:00.000-07:00

There's a new UK documentary about CFS: What About ME?

M.E.- Myalgic Encephalomyelitis, the UK name for Chronic Fatigue Syndrome. Sounds much scarier, doesn't it?

Their website is here: http://www.whataboutme.biz/

On their list of people interviewed, I recognize Dr. Sarah Myhill, Dr. Charles Shepherd, and Anette Whittmore, founder of the Whittmore-Peterson Institute, which funded the groundbreaking XMRV study.

"People are suffering. But they are being told it’s all in the mind. Our aim is to investigate ME further, to put the plight of an ME sufferer in the public’s consciousness and to encourage further research and health policy reform. We hope to spread the word through this website which will have videos and podcasts on ME, short virals on the ME situation delivered multi-platform, a TV documentary aimed at a prime-time audience, a worldwide theatrical release and a docu-drama dramatizing an ME sufferer’s struggle, based on the novel “The State of Me,” by Nasim Marie Jafry."

I hope they succeed. The trailer looks promising. Please watch. They've really come at it from the right angle. I can't think of a more interesting story for a documentary, but of course, I'm biased.

"The major anger is the lack of belief."

"Don't pay attention to your own body. Don't pay attention to your own feelings. Don't pay attention to your own thoughts."

Vividness

2010-03-31T18:50:00.000-07:00

I've had my worst week in a long time. Mostly I've been in bed, so tired I just lay there, close my eyes and breathe. I haven't been able to leave the apartment except once to look at a tree.

I was determined to write a blog today though, and I failed. What's below is not what I wanted to write about...stem cells, depression, antibiotics, hard decisions. I kept forgetting what I wanted to say halfway through each sentence. This just came easier. I look at my notes now and it's like hieroglyphics. I wish I had one of those speech to text programs. I think I would be able to say what I want to coherently, but maybe not. Maybe I stopped half way though each sentence because there was really no idea at the beginning of it. Sometimes you wake up from a good dream and think, “This is a brilliant idea!” and then a few seconds later realize that there was no idea at all. I'm afraid that might be happening when I'm awake.

My friend Tim, by the way, really did have a brilliant idea in a dream though: a t-shirt for a dog with a kite attached!

Yesterday I did something quite out of character for me. I left the apartment...wait there’s more...just to walk to the sidewalk and see a jacaranda tree in full bloom. I've never been one to be inspired by the beauty of nature, or beauty of any kind, really, but I wanted to see this tree. Jim had noticed it a few days before and took a picture of it with his phone. It was a beautiful picture, particularly so on his LCD iPhone screen, he showed it to me while I was in bed. I actually got up for the first time that day and went to the window to see if I could see it, but I couldn’t. I love these trees. I have a picture somewhere of the purple petals fallen all over my old Saab. I think I first noticed them years ago when I came out to LA from Syracuse for spring break, driving down Hollywood or Franklin, suddenly seeing all the purple flowers and thinking “What kind of wonderful tree is this?!” The next year, when I transferred to USC I recognized them on campus and sitting among them I really did have this feeling of awe and privilege.

I couldn’t go out and see the tree that evening, it was a few days before I finally did, yesterday. My legs were shaking as I walked down the stairs. I had to hold on to Jim for support and he practically had to carry me back up them. I don’t know for how long these trees bloom, it seems like only a week. There were already a lot of petals on the ground when we got there. They made the grass seem greener and I wanted to lie down on it, but I didn’t because the ground was wet. I remember thinking how strange it was I was feeling such a strong attraction to these vivid colors. I think I associate vividness with energy. Once during an acupuncture session, I came in feeling especially run down, and a few minutes into the session I felt this rush of fullness, adrenaline maybe, but it was like someone had turned a dial in photoshop and turned up my contrast and saturation, and I leapt out of the background and rejoined the world again.

Happiness Award? Me?

2010-03-22T21:57:00.000-07:00

I'd like to thank Shelli for nominating me and some other new bloggers for a Happiness Award.

The rules:
1.)When you have received this award you must thank the person that awarded you this in the new post.
2.) Name 10 things that make you happy
3.) Pass this award onto other bloggers and inform the winners.

It's been a hectic weekend, so sitting down alone with my computer and thinking about things that make me happy sounds pretty good right now.

1. Books! - Hit TV shows, popular music , I'm really out of the loop, but if you want to strike up a conversation about a Bestseller, I'm totally up for it. I used to go to Borders or Barnes and Noble at least twice a month just to browse around and check out what was on display, what was new in hardcover, new in paperback, and what percentage of the books for sale on the Buy Two Get One Free table I'd already read. Lately I've been into memoirs. I seem to always be buying cookbooks. I have to force myself to read novels for some reason, but it's always more than worth it. When I'm too brain fogged to really read I like graphic novels, easier than regular books and not as stimulating as television.

2. Yoga! - The first time I did yoga was at the school fitness center my freshman year in college and it was pretty unimpressive. Just a lot of stretching, like a dance class but without the dancing. My first Kundalini yoga class was a completely different experience. Huge, high-ceilinged studio, live drumming and a gong, and an intense workout where every posture felt incredibly effective and incredibly right. I walked out thinking, "This is what exercise should be!" and wishing we had done Kundalini instead of the boring calisthenics we did in gym class in school. I don't go to the classes anymore because it really gets your heart rate up, which is bad for CFS, but I bought a book and sometimes do poses at home by myself. I've just lately gotten into restorative yoga, which is really relaxing and supposed to activate the parasympathetic nervous system. I know I sleep better on the nights I go to class.

3. Travel - Or even just dreaming about travel. Mostly road trips. I love driving so much, one of my dream jobs would be trucking. "It's a tough job, but you can't beat the view." (I heard a trucker say that in the Big Rig documentary) I've been to 46 states, I still need Maine, Montana, Rhode Island, and Hawaii. When they build the Trans-Hawaii Highway (doesn't that just roll off the tongue?) I'll be the first to drive across. I'm not really in road-trip condition right now, but I've recently discovered the train and sleeper cars. It's like a road trip but you don't have to drive, you just lie down and read books or look out the window.

4. Music - No matter how bad it gets, there will always be good music.

5. Dougal! - My dog. Actually, my mom's dog. He doesn't live with me, unfortunately. In the words of my boyfriend, he's a "high-quality dog."

6. Jamie Oliver's Food Revolution - I am so excited about this show. Getting off S.A.D. (that's what vegans and raw foodists call the "Standard American Diet) is one of the greatest things I've ever done. It's just too bad I sound like a tool when I try and talk about it to my friends and family. Thank god there's Jamie Oliver to get out there and be a tool for me.

And on that note:

7. Finding New Healthy Restaurants - When it comes to restaurants, the world is not my oyster, but my venus fly trap. Are there vegan options? Are there wheat-free vegan options? Is there sugar in this dressing? Is there agave in this soup? You don't cook in vegetable oil, do you?? So when I find a restaurant that is truly committed to serving healthy food, it's very exciting. My latest find was today in Lakewood, Ohio, the Good 'N Raw Cafe. I got a green juice, and a green tea iced latte, something I love and haven't had in a very long time. Theirs had matcha, almond milk, coconut, date, vanilla bean, and a little nutmeg, cinnamon, and ginger. They didn't have many food options, but Jim got the "tuna" salad made from walnuts and sunflower seeds instead of tuna. I had a bite and it was amazing, and I've had a lot of mediocre "tuna" salads at raw food restaurants. Completely forgot green tea has caffeine though and I couldn't figure out why I felt so buzzed after I drank it. It was a good buzz though.

8. Different languages and accents - I get a thrill out of pronunciation. I watched six action packed episodes of 24 this week with my dad and brother, and the biggest rush for me might have been anticipating Anil Kapoor pronouncing his W's. I have a couple books and tapes on "acting with an accent." I took German in high school, Spanish in college, and I've dabbled in French, Russian, and Portuguese. I know about half of the Cyrillic alphabet. It'd be awesome to learn fluency in one of these languages, but I've pretty much given up on trying to actually learn and just do it for fun. I think the most beautiful languages are Hawaiian, Finnish, and Russian. There are no ugly languages. My dream is to learn to pronounce every sound in the IPA. (International Phonetic Alphabet)

9. Blogs - I love it when people write. I think everyone should have a blog. Really! Everyone!

10. TV - Mostly anticipating new episodes of my favorite shows. It was so much fun anticipating the Breaking Bad season premiere on Sunday! Or TV on DVD, watching like six episodes in a row, especially with someone. Actually, it's pretty fun alone too.

Well, that's ten, I guess I won't be mentioning my friends and family. Sorry guys, you're great, but I had to talk about Breaking Bad.

This is where I'm supposed to nominate other blogs, but I think by now everyone's already been nominated, so I'm just going to say, anyone who reads this and wants to do it, consider yourself nominated by me.