Laura Hillenbrand

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

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

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

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

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

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!

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...