Saturday, December 25, 2010

Snowman on a Ledge

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!

Tuesday, December 21, 2010


"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.

Thursday, December 9, 2010

a poor go-to-sleeper

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.

Sunday, December 5, 2010

Joint Hypermobility

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?"


"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.

Friday, December 3, 2010

Dear Sugar

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.

Tuesday, November 23, 2010

Hitchens meets Brain Fog

"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."

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.

Monday, November 15, 2010


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.

Saturday, November 13, 2010

Laura Hillenbrand

I can't remember now where I first saw Laura Hillenbrand had a new book out. Maybe a banner ad on, 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.

Tuesday, November 9, 2010

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"

Friday, November 5, 2010

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.

Monday, September 27, 2010


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.

Thursday, August 26, 2010

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?

Thursday, August 19, 2010

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.

Monday, July 5, 2010

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...

Thursday, June 3, 2010

Dr. Lerner, Lyme Disease, and other Doctors

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.