Night Owl/Stem Cells/Resilient Amoeba

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."

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

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

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 Munson'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

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

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.