Sunday, February 28, 2010


This is the part of my blogging journey when I step back and think, “Is this what I really wanted?” So far I haven’t written about anything I’d been planning on writing about. Ideally, I wanted each of my entries to be like a mini Malcolm Gladwell essay; revealing startling, counterintuitive ideas about illness, the medical community, and ultimately the very world we live in.

But my capacity for research is still very limited, even when it comes to my own journals and notes. So for now I’m going to have to stick with the stream-of-consciousness style. I feel like I did back in my high school, where I suddenly found that my ability to direct my mind to write essays about American confessional poetry or Gothic fiction had vanished, but I was still staying up all night writing personal essays, posting them online, and then sneaking up to the library during lunch to check the comments on the internet.

To an outsider it may have looked like a classic case of lack of discipline or loss of motivation, and I wondered about that myself, but I didn’t feel any change like that in my personality. I still wanted my teachers to like me, I still wanted to be a good student, in fact I still thought I
was a good student, when my English teacher asked when I was turning in my already-three-days-late ten-page-essay and I said with a shrug, “You know I’ve been trying...but I just can’t do it.”

There had been a huge change in my brain, and I was still at a loss to understand it. It’s hard to look at your own flailing mind when all you have to look at it with is your own flailing mind. Susan Griffin, who, I believe, was already a Pulitzer prize nominated writer when she contracted CFS, explains it best:

Clearly, some aspects of my ability to think were affected more than others. What I found was that much of the time I could think lucidly and even creatively if I let my mind wander wherever it wanted. But questions were difficult to answer: It was as if the memory and knowledge existed, but my mind could not locate them. I experienced the attempt to do so as very tiring, so much so that once when a visiting friend kept asking questions, I burst into tears from the effort to answer her.
from What Her Body Thought

But more on that another time. For now I’m letting my mind wander while I take dictation.

I drink your milkshake

I never did have my birthday shake. My sore throat turned into a full blown cold, my first one in at least three years. I just did not feel like drinking a shake while sick, or eating anything. I lost back what little weight I gained and then some. The almond milk I made for the shake was only good for three days, so on the third day I had Jim drink it. I did take one sip though and it was delicious. I think using real vanilla bean instead of vanilla extract makes a huge difference. It tasted just like the one at Cafe Gratitude. He used one date, by the way. I still have the ice cream in the freezer for another, just have to make the milk when I’m feeling up to it. Soon.


My cold lasted a week and is over for the most part. Two days of fever, lots of coughing and sniffling. I just want my appetite back now. If I can’t gain some weight fast I will have to buy a dress for my cousin’s wedding from the children’s department.


My digestion isn’t great, but I still haven’t been getting nauseous. My acupuncturist wants me to do another round of “tummy tonics” (she won’t tell me what herbs are in them) but my gastroenterologist doesn’t want me taking any herbs while I’m on the antibiotic. (5 more days to go on that) So my plan is to start the tummy tonic again on Sunday and hope it will work as well as it did last time.

There will be Blood work

Never did have that phone consult with Dr. Cheney. I sent in an e-mail to schedule it but I don’t know if it’s necessary anymore. I got my blood work in the mail and it is mostly normal. My BUN was low, a 4 when the range is 8-22. I looked it up and a elevated BUN can mean kidney disease but a low one just indicates malnutrition. No surprise there.

He put a check by my total protein, which was normal. Not sure what that means. And finally my sed-rate is elevated, 25, which indicates inflammation, again, not surprised.

I was surprised to see my white count is normal, 6.6, usually it’s in the 3s or 4s. A good sign for my immune system? Red count also normal but on the low side: 4.97.

The Dog Delusion

My goal in life has been to get myself healthy enough to go back to college. Lately I’ve been rethinking that. My new goal is to get myself well enough so that I can own a dog. Every time I see a dog these days my heart melts a little. My mom has a dog, Dougal, so I get so see him when I go home, but that’s not very often.

Last year I actually deluded myself into thinking I could take care of a dog. “Dogs are therapeutic!” This was when I still thought long walks would be healthy for me, and a dog would force me to take them. What a joy it would be, the two of us walking around the neighborhood together while I got healthier and healthier. I spent weeks going to kennels and rescues, and browsing through pictures at I bought some general dog care books, as well as one by The Dog Whisperer and Animals Make Us Human by Temple Grandin.

And then I met Joey at the Bill Foundation, who I renamed Bingley. Look how cute! He was the greatest dog and the best fetcher ever. We had four blissful/stressful days together. On our first day I took him for a one hour walk, it was initially only going to be 20 minutes, but The Dog Whisperer said your first walk should be at least an hour, and I felt up to it, so we pushed on. The next day though post-exertional-malaise hit me like never before and I spent the next three days feeling poisoned in every part of my body. But still, I enjoyed taking Bingley to the park, sitting on a bench while he fetched tennis balls, and giving him a bath with extra-whitening poodle shampoo.

He followed me everywhere and slept in bed with me at night, never getting up until I got up. He was very patient and respectful. When, after four days, my landlord e-mailed and said he had to go because the neighbors were complaining about the barking, I cried, out of sadness and relief.

I took him back to the adoption foundation. I checked his profile every day after that and saw he was adopted rather quickly. (Again, no surprise.) Now every time I see someone walking a white poodle I wonder if it could be him, and what his name is now.

Monday, February 22, 2010

Colds and Flus

This is a little unusual, for the past two days I've had a sore throat. No other symptoms really, my chest hurts a little, a cough sometimes, and I had a headache all day Saturday, but really otherwise I feel like I always do. So I'm not sure if this is a cold or what. I'd say it was strep throat but I don't think you can get that after the age of ten. When I was a kid I would get strep at least twice a year, I remember it well, my gag reflex was so sensitive so I fought really hard and they used to have to tie me to the table to get a throat culture. In middle school and high school I continued to get sore throats but they stopped being strep, so I stopped getting cultured.

I'd also like to note that this sore throat started before I started the Alinia, I started that Sunday. Not that sore throat is one of it's side effects. I've also been excessively thirsty, but that usually happens when I'm getting sick. I don't think it's the Alinia...

I've been gargling chlorophyll and drinking lots of Throat Comfort tea. I was so happy when I discovered this tea when I was 18 and ever since then I've always had it in my cupboard for when the next sore throat hit, and they were always coming. But when my CFS started getting worse around 2006 I stopped getting colds and was finally free from sore throat cycles. I still always kept the tea around though. I didn't want to be without it if a sore throat hit.

It went on like that until April 2009 when Swine Flu was sweeping the nation and I woke up with my first sore throat in years. I was in New York, seeing Dr. Enlander for a check-up after I'd finished my eight months of weekly hepapressin injections. When I first saw Dr. Enlander he asked if I ever got colds, and I said no not lately, but I used to all the time. He said he found that with his patients. They never got colds, presumably due to overactive immune systems. That sore throat turned into my first flu since I was a kid. I never tested for it or anything, but because of the timing I've always just assumed it was swine.

Dr. Cheney also asked if I got colds and I said never, "except once I got the flu right after seeing Dr. Enlander." He said that could have been a good sign, that the hepapressin actually might have done something for my immune system. I hadn't considered that before. He also said he found that CFS patients weren't likely to get the swine flu, but if they do, it's bad. I don't remember exactly how he put it, but it left me with the impression that if you got it you'd be in the hospital fighting for your life. So when I got the flu again a few months later, I was a little scared.

I called his office and talked to his assistant, who seemed surprised I had it. Dr. Cheney said to stop the cell-signalling factors, double up on the klonopin and take lots of Inosine, which I did. I also did lots of naturopathic stuff like drinking garlic and oregano oil. My naturopathic doctor told me that to sweat out the fever overnight I should rub a homemade garlic/coconut oil concoction on my feet and drink oat straw tea before going to bed. I don't know if that's what did it but when I woke up my 102 fever was back to normal.

This sore throat isn't like the ones I get when I'm sick though. It feels more scratchy than sore, like I've been screaming in my sleep all night long. Not that it isn't sore too, and that it isn't constantly annoying. The tea isn't helping as much this time as it usually does. I hope it goes away by tomorrow and doesn't turn into something worse. Especially since today is my birthday.

This is going to be my first birthday without a cake. Last year I had one from Real Food Daily made with barley flour and maple syrup. In the weeks leading up to today I didn't want to plan any special food at all for my birthday since I was so nauseous all the time and so careful about avoiding all kinds of sugar. In fact I didn't want any special anything. I wanted to sit on the couch all day reading, but that isn't at all what happened and I've actually had a pretty eventful birthday weekend thanks to my friends and family. I probably pushed myself a little too hard. Not today though. Today I'm taking it very easy.

However, I'm excited to report that I've gone almost a week now without any painful nausea. The days before that weren't so bad either. Someone gave me some Chinese "Curing Pills". They say they're for good digestion. I'd take them after a meal as soon as I began to feel nauseous and the nausea would get a lot smaller. On Monday I showed them to my acupuncturist and she looked at the ingredients, some familiar like potchouli and angelica root, and some for which there are no english words, and declared that these weren't for digestion, they were just for the spleen. (Which made me wonder, just how bad then is my spleen? Mono hits the spleen, doesn't it? So it would make sense for me to have a lousy spleen.)

She made me some liquid medicinal herbal drinks. Two a day, to take after meals. They worked like the curing pills only better. I'd eat, feel nauseous, drink the medicine, and feel relief. By the third day (the last day, she only gave me six pouches) I didn't even feel like I needed to drink them. I was really worried about Thursday, because my appointment was Friday and it was a gap day with no medicine, but my digestion was ok on Thursday. It's been ok all weekend, even after she cancelled my Friday appointment for a family emergency.

I'm still careful about what I eat though. I got sick of blended raw avocado soups, so I've been eating more blended cooked soups. I'm still eating rice porridge every day. I love how easy it is to make in the rice cooker, I just made it today for the third time this week. I usually have it for breakfast, sometimes just plain cold mush, sometimes I add a little hot water to it so it's more like oatmeal. Once I added a little liquid stevia so it really felt like I was having a treat. (Stevia is a sweetener made from the leaves of the stevia plant that are naturally sweet. It comes in powder and liquid form, has no calories, and I've not yet heard anything bad about it.)

Other foods I've tried eating in small quantities: tofu (no tempeh yet, tofu is easier to digest) quinoa, roasted beets, and home made vegan ice cream.

Jim got me an electric ice cream churner for Valentine's day and I've already used it three times. We made mint chocolate chip ice cream using the recipe from the Pure Food and Wine cookbook: young coconut meat, soaked cashews, raw cacao nibs, coconut oil and vanilla and peppermint extract. The recipe calls for agave but since it is 90% fructose and Dr. Cheney said fructose was bad for CFS we used two teaspoons of raw powdered stevia instead. It gave it a nice green color and I thought it tasted exactly like it does at the restaurant. I thought that only I would like it, since my tastes are all off balance from starvation and lack of sugar, but my parents and sister (in town for my birthday) all liked it too.

It's too bad you can't buy ice cream sweetened with Stevia or I wouldn't have to be making my own all the time. There is some law that says stevia can only be sold as a dietary supplement, not as a food. I think I read in Skinny Bitch that the sugar industry is trying to keep it out of the country or something. So since you can't buy stevia sweetened ice cream, and since my ice cream making is going so well, I am thinking of opening a Scoop Easy. Stay tuned for a menu and a password...

Today I made vanilla ice cream using the recipe from the Cafe Gratitude cookbook. I didn't particularly like their vanilla ice cream, it's very nutty tasting, but it's the main ingredient in their chocolate shake, which may be the best food I've ever eaten. Before I gave up dairy (and a few times after) chocolate milkshakes were always my go-to comfort food. I've tried a lot of vegan chocolate milkshakes and none of them even come close to the "I Am Eternally Sweet" chocolate milkshake at Cafe Gratitude. (You have to say it like that when you order) I've only gotten up there for shakes three times in the last three years and tonight will be the first time I attempt to make it myself. I already made the ice cream using stevia instead of agave...and it still tastes exactly like I remember it from the restaurant.

The only thing I'm worried about is the shake recipe, in addition to ice cream, almond milk and cacao powder, it calls for the shocking addition of two dates. Two dates! Such hedonism! There was a time when I thought dried fruit was a healthy sugar substitute but after my dried mango addiction of 2007 I've been steering clear. So I don't know what to do about this date situation . I want the milkshake to taste exactly like it does at the restaurant....but...two dates? Right now I am considering using just one. One date. It is my birthday...

Actually, come to think of it, chocolate milkshakes also used to be my go-to relief for sore throats. Preferably from Bob's Big Boy. They'd numb my throat for the same amount of time it took to drink them, and I thought that was all the relief I could ask for.

I'm already gaining back a little weight too. If you've never experienced excitement at gaining weight, let me tell you it can be just as rewarding as the excitement you feel from losing it. Creeping towards 100 from either direction is equally thrilling to me now.

Wednesday, February 17, 2010

An Amoeba?

Still have the nausea. Reminded of someone who knows my pain:

(Guiseppe Zangara let's out a wail of agony)

John Wilkes Booth: You know you really ought to do something about that stomach.

Zangara (heavy Italian accent): (enraged) I do everything about the stomach!

Booth: (still calm) Oh yes?

Zangara: I give up wine. No good! I give up smokes. No good! I quit my work. No good! I move Miami. No good! I TAKE APPENDIX OUT! No good! Nothing no good! Nothing! Nothing! Nothing!

Booth: Have you considered shooting Franklin Roosevelt?

Zangara: (suddenly hopeful) You think that help?

Booth: It couldn't hurt...

This is the dialogue leading up to the song "How I Saved Roosevelt" on the Assassins soundtrack, a Sondhiem musical where famous assassins get together to party and they each have their own ballad. Well, something like that. I've never seen it but I have the soundtrack. This song's been in my head a lot lately because Zangara laments throughout it "the sickness in his stomach" in a bouncy Italian way that's quite catchy. Maybe on some level it lets me conflate unbearable nausea with a lively Italian wedding party.

Based on the song, I got the idea Zangara tried to kill Roosevelt because he was driven mad by nausea and wanted to take his revenge on the world. I sympathized. When I first heard the song last year I wanted to know more about his plight, but his wikipedia article was just a stub and made no mention of his stomach. The proper fate for an assassin perhaps. However, I just looked him up again and I'm happy to see his page has been thoroughly updated:
Zangara, a poorly educated bricklayer, suffered severe pain in his abdomen, later attributed to adhesions of the gall bladder. These were later cited as a cause for his increasing mental delusions. It became increasingly difficult for him to work due to both his physical and mental conditions, and in his fevered mind came to believe that the President of the United States was supernaturally responsible for causing his pain.
He missed Roosevelt, but killed the mayor of Chicago and was executed by electric chair. Last night, while in the throes of my after dinner nausea, I imagined the path of my future, laid with the same doomed bricks of Guiseppe Zangara's. But my appointment with my gastroenterologist this morning has actually left me with a reason for hope. The reason?

An Amoeba!
First of all, let me say that I've mentioned this gastroenterologist before, unenthusiastically. Our first two appointments left me unimpressed. His website was lackluster, and he just wasn't communicating very well. He had me wearing a 24 hour Holter monitor but was reluctant to explain why, and the carafate he prescribed for gastritis wasn't helping any. I'd gotten his name from Dr. Cheney's GI Protocol blog, thinking at least here was a gastroenterologist who understood CFS, but after our meetings, he seemed like just another gastroenterologist. I met with him again this morning after my 9am ultrasound, the one I was supposed to have two weeks ago but slept through. (I almost slept through this one too when my iPhone alarm somehow got set to silent.)
The ultrasound results were normal, as expected. No gallstones or giant tumors. Next he wanted to discuss my Holter results. Turns out he was using it to confirm that I had dysautonomia, malfunction of the autonomic nervous system. I've never been tested but I've always assumed I had it since it's sort of standard with CFS. He showed me charts of my heart rate that showed my sympathetic and parasympathetic nervous systems were off. Specifically, my parasympathetic nervous system was not activated when I was eating. In contrast to the "fight or flight" response of the sympathetic nervous system, the parasympathetic nervous system is for when we "rest and digest", a phrase I first heard two weeks ago from my yoga teacher.

He went over my GI test results from Dr. Cheney again. He said the only abnormalities it showed were moderate dysbiosis, (which he said last time might not mean anything) low SIgA, and an equivocal result for amoeba. He'd had me do another saliva test for amoeba, which he told me came back equivocal again, and to him two equivocals equals a positive. So I have an amoeba. Well, lots of them.

The other thing he focused on that discouraged me at our first meeting was my low iron and anemia. He wanted to treat it with IV iron, but after talking with Dr. Cheney I decided against it because he was against it. He said the anemia was not causing my fatigue, and of course I agreed. The gastroenterologist brought up the IV iron again though, he said my levels were as low as he'd ever seen in anyone. Actually, despite eleven years or so of fatigue, the anemia has only been going on a little over a year. I know because I was tested for it over and over whenever I told a doctor I had fatigue. "Do you know what the amoeba eats?" he asked me. "Red blood cells" (anemia is marked by a deficiency of red blood cells) "You'd have to have had the amoeba a long time to get this anemic."

Maybe he could see that this still wasn't making much of an impression on me, so he kept talking. "A lot of doctors think you have to go to India or something to get an amoeba like this, but it's not true." He went on about NAFTA and cross-contamination. It was then I realized that if I had this amoeba, then I had gotten it from produce. Suddenly it all made sense. I told him how I used to subsist mainly on Ramen Noodles and Stouffer's French Bread Pizza, but in 2008 I gave up processed foods and started eating a big bowl of raw vegetables every day. Six months later the nausea started. "There you go," he said.

My mother had been concerned from the beginning about me eating so many raw vegetables, her argument being that we cook food to kill bacteria so we don't get sick from things like salmonella. This argument was always brought up in all the new raw food cook books I was buying, and also quickly dismissed because optimal nutrition and enzymes were more important to our health than killing all the bugs. Maybe on the Oregon Trail dysentery was a major problem, but modern diseases were caused by too much processed food and not enough fresh produce. I took the raw foodist's side over my mother's because I really felt better after I changed my diet. Maybe not significantly better, not noticeably. I loved eating fresh raw vegetables every day.

So now I'm a little scared. Should I never eat uncooked vegetables again to ensure against contracting another amoeba? No, but I am going to start washing my produce better. I know that's not a guaranteed way to get rid of bacteria but sometimes I don't even wash them at all, such is my faith in the pureness of vegetables. So OK Mom, you win. You will never shriek and grow faint upon seeing me start to chop an un-scrubbed zucchini again. I've also been buying more of my produce at farmer's markets, so I know the blended avocado I'll be eating today wasn't shipped here from Chile, something they're actually boasting on the Albertson's commercials.

So what does one do about an amoeba? To paraphrase my doctor, we are nuking it with a two week course of antibiotics. At first I was reluctant, because when this all started I tried a lot of antibiotics, including Flagyl which is supposed to be the strongest and they didn't make any difference. I'm also reluctant to take antibiotics in general, but I consider this an acute situation, an emergency. I will be taking Alinia aka nitazoxanide, a drug that, according to my doctor, was made legal only recently in the US because of 9/11 and that it is the only drug that works against bio-terrorism agents. He also said the Flagyl people had been working hard to keep it out of the country. "Flagyl, he said, "will work against the amoeba 50-70% of the time. Alinia works 100% of the time" He also said it's not new, they've been using it in Europe 10 or 12 years and he himself has been using it for almost as long in his own practice and has published about it. I'm having flashbacks to the lyme disease doctors, but I think this is different. When this is done I can take another saliva test that will come back saying "negative" instead of "equivocal."

During the end of my visit with Dr. Cheney, he said something like he thought that the weakest part of his plan was the GI protocol. That when people don't get better it's because of issues in the gut. That his colleagues say he should be more aggressive with antibiotics and they might be right, but to him it seemed that it tends to make things worse. It was something like that he said. I was with him then, no antibiotics. But now I figure, what the hell, one last shot.

So if everything goes according to plan, I am starting this ├╝ber-antiobiotic tomorrow. I'm still not going to take probiotics because Dr. Cheney says they're bad for CFS, but I'll make sure to keep drinking coconut kefir every day to try and minimize further dysbiosis. I really hope my hunch is right, that this amoeba is there and that these meds will kill it and that it will help my digestion. I'm not expecting any miracles, the Alinia won't kill the XMRV, but this really makes sense to me. If I can beat this amoeba, maybe, just maybe, my health can go back to how it was before the digestion trouble. I was still sick, I still had CFS, but I wasn't as bad. I'd say now I'm about a 30 to 40 on Dr. Bell's disability scale, and before the nausea, I was at least a 60. The post-exertional malaise would catch up with me and kept me out of school, but I was still able to shop for clothes when necessary and was even applying for part time jobs.

I know I could very well be getting my hopes up for no reason, but I can't help it, they're up.

Tuesday, February 9, 2010

We eat only rice

Our Nausea has gotten less painful, but I'm continuing to lose weight. This morning I reached another all time low. I now aspire to 98 pound weaklingdom.

My ultrasound is rescheduled for next week. And I'm getting the blood drawn for Dr. Cheney's test today as long as the roads don't wash out. Chem Panel, Liver Panel, CBC, Sed Rate, CRP, Lipase, Amylase. I'll look up what it all means later.

Deciding what to eat is a stressful issue right now. There's nothing I can eat that doesn't give me some kind of nausea or indigestion. I'm still at a loss for what to do, as evidenced in this text message conversation with my dad yesterday:

Dad: How is your weight holding up?
Me: It's still low
Dad: Below 100?
Me: Yeah
Me: 96 but it's probably dehydration from being in Vegas
Dad: Is there anything to stop (or start) consuming to help?
Me: wtf do you think?

I never wanted to say wtf to my dad, but that question made me a little crazy. It evoked memories of the similar interrogation by my gynecologist, and by my mother. I hoped that my dad wouldn't know what wtf means, but everyone knows what wtf means. As soon as you see it you get it. That's the beauty of wtf.

I had my livejournal open when he texted and this is what I wrote while waiting for his response:

I can't believe I just said wtf to my dad. But what a stupid question! Maybe I should have said..."I saw this book at a cafe and am considering going on a blended food diet." But what kind of answer is that? And doesn't he know where things are with my doctors? I already stopped the meds Cheney told me to, I'm waiting for a blood test subscription in the mail. ... and no doctor understands IBS let alone CFS so NO!!! and if there WERE wouldn't I ALREADY BE DOING IT????

All caps! See how mad I was? And four question marks? I hardly ever do that.

And just the other day I was thinking that I was a lot more patient with my father then with my mother when exasperating questions arose. I resolved to be more patient with my mother, but instead I am just being a smart ass with my dad.

Eventually he texted back:

Dad:I think this loss of weight is a more immediate threat to your health and needs to be addressed.

To which I fired back:

Me: Well it's complicated and you are not my doctor. I'm doing everything I can to address it but the realty is I'm in uncharted waters and no doctor knows what to do. I don't have diverticulitis. I have chronic fatigue syndrome and there are only a handful of doctors in the world who understand it and none of them have written a diet book.

I hate the way I sound there. But it's kind of a sore spot of mine when someone even hints at the suggestion that I am not doing everything I can. Seven years of undiagnosed CFS will do that to you. And anyway what did he expect me to say? "Oh now that you mention it I guess I should stop eating all this cotton candy!" Have we learned nothing from The Six Months of Nausea of 2008? How many gastroenterologists did I go to? Four? Five? How many of them knew what was going on? Zero. When it comes to this illness my parents are still very much amateurs while I'm trying to go pro. And when I'm in a crisis I don't have time for their silly questions. "Well you see Timmy, we can't stop global warming by building a lot of air conditioners because..."

I went to acupuncture after that conversation, my first session in two weeks. She usually just puts needles in my hands and feet, arms and legs, and one or two in my head. Once I let her put a very tiny one in my chest to open my lung chi. She is always talking about major blocks in the flow of energy in my abdomen, but the one time she put needles there I kept imagining they were plunging into my diaphragm or tickling my liver and I couldn't take it. For the last few months I've had a standing order for her to stay away from that area. When I came in today though I was determined to let her put needles wherever she wanted.

I told her how bad the last two weeks had been. "You really need to let me open your chi" she said, and I nodded, thinking I was agreeing to being needled in the stomach, but actually I was agreeing to being bled. I know it sounds medieval, but there were no leeches. She had a clicker, just like a pen, that she used to punch four tiny holes in my skin, one on each thumb, one on each big toe. Suddenly it was easier to breathe. Then more needles, including two right below my rib cage. "There is blocked food there. Also blocked energy." I hardly felt them at all, but later I had pretty bad pain in my lower abdomen that got worse with my breathing, so I had to keep my breath very shallow. I still don't know what it was, it was a stinging pain I'm not used to, but it went away after five minutes.

The nausea I'd come in with was gone after the treatment. It might have been gone anyway, but it usually lasts longer so it very well could have been the treatment. She also ordered me to go on a two day diet of rice porridge. "It will be bland, but you can use a little soy sauce. Nothing else. And no juice. Just water." It sounded like a dream. She gave me a recipe, and only when I was halfway through the cooking did I realize that it was for white rice and I was using brown. The water to rice ratios as well as the cooking times are very different for white and brown rice. I tried googling "brown rice congee" on my iPhone while it was cooking but it was difficult because I had to stir the pot once every minute to keep the rice at the bottom of the pan from burning. The results were mostly other frustrated people asking for advice. There was only one recipe, that called for four times the water I had used and a 3-4 hour cooking time.

I only cooked it an hour. It seems like porridge though. And I've been digesting it without nausea, so I'm very happy. The only problem is I only made one cup because I thought, "One cup of rice usually lasts me all week!" I forgot to factor in the fact that I would be eating nothing but rice. So now more rice is soaking and tomorrow morning I'll have to go through the whole ordeal again. I don't know any restaurants where you can get plain brown rice congee. Upon consulting with my Asian and Middle Eastern friends I've decided to purchase a rice cooker.

And after my two days of porridge? What then? Well I've been thinking a lot about it and there are a number of things I am considering. I heard that mung beans and rice is a "pre-digested food" and there are yogis in Tibet who live off it exclusively and thrive. I'm also pondering blended meals of raw vegetables and avocado.

*The title of this blog is actually a lyric from a Momus song. Today is Momus' 50th birthday and the last day of his splendid blog Click Opera which I am going to miss very much. The song is called The Cockle Pickers and I first became familiar with it on a week long visit to Los Angeles where it rained the whole time, much like today. The complete lyric is actually "We eat only rice. I am depressed."

Friday, February 5, 2010

I would also add packing a suitcase

This is the most resonating passage I've read in What Her Body Thought so far:

Paradoxically-but anyone who has been seriously ill can tell you this-whatever ghosts inhabit your psyche become most fierce when you are physically weak. I am never casual about dressing. But when I am exhausted, the simple act of getting dressed, burdened as it is with self-doubt and vanity, suddenly becomes overwhelming.

Tuesday, February 2, 2010

Regression to the Mean

I went to my first restorative yoga class last Sunday. I liked it so much I went to my second class on Thursday at another studio. The first one was right down the street, the teacher's name was Karen, which was also the name of the only other student there besides myself. It was dark, no one spoke, and the music was this amazing downtempo/Indian zither/Ennio Morricone amalgam. The second one was right down the street from my old apartment. The class was much larger and everyone seemed to know each other. There was no music and the teacher talked the entire time on the night's theme, "Digestion." For a moment I got excited, thinking that we'd spend the entire night in poses specifically designed for good digestion, but she meant it more as a metaphor. "We digest what we read, we digest conversations..." It was a bit of a disappointment. Did I really think these poses would make a difference in my digestion? Probably not, but over the years I've become quite the connoisseur of any and all kinds of illusions of control.

On that note, I'm going to talk about my digestion now and I want to be clear that nothing I'm going to say is a metaphor. My nausea isn't existential angst. I spent over a year trying to get through that little book and I still can't say the word without thinking of it. I also usually think of Buster and Lucille II on Arrested Development. "It's our nausea." That makes me feel a little better.

After my post last week I was really in despair about my digestion problems. I was getting far below my lowest weight ever, and I was afraid that soon my ribs would be visible through my sweater. I left a distressed voicemail for my gastroenterologist and fired off a hastily written e-mail to Dr. Cheney's assistant, urging them that there had to be more we could do. Blood tests, something. I heard back from the gastroenterologist a few days later that I should keep taking the carafate and we'd talk after my ultrasound Monday. I stopped taking the carafate anyway because it seemed clear it wasn't helping. And I slept through my ultrasound Monday and still need to reschedule, which I will do once I think I am capable of getting to the hospital by 9am. It seemed possible last week when I made the appointment but now I'm so weak, presumably from lack of nutrition, I lie in bed for hours before I move to the couch and I don't do much then either. I really wanted to go to that ultrasound though. The night before I was lying in bed imagining how they'd find something terrible, nothing less than a fist-sized tumor, and that half my intestines would have to be taken out. But they probably won't find anything.

What I've been wondering is, how many other CFS patients have this much trouble eating? I know GI symptoms are supposed to be common, but this bad? Especially since Dr. Cheney said my GI test results were "pretty good" compared to the rest of his practice. Is the rest of his practice losing a half a pound a day? Are they all in severe pain every time they drink a cup of broth? I tested negative for yeast and fungi, and according to the notes he wrote on my results my Total Intestinal SIgA at 235 was "not bad" and my gut dysbiosis was "moderate." There was even a place where he wrote "pretty good". The only other part circled was "low" chymotrypsin, a marker enzyme for pancreatic exocrine output.

So what is it that is causing terrible nausea whenever I eat anything? I've been eating a lot of raw vegetable salads, and recently found out that Dr. Pimentel, local bacterial overgrowth expert, considers them bad for overgrowth. But I always felt the least nauseous when I ate them. But now sometimes they make me sick, sometimes not. When I first started the goat kefir it was fine, but by Saturday I realized the nausea was worse and worse every time I drank it. It's supposed to be easily digestible, but apparently not for me. I'm back to the coconut now which is ok so far. I wonder if it was the animal protein in the kefir that was hard to digest? To be safe I've been sticking to brown rice and tempeh for protein.

There is so much I don't know about digestion. I've had the wikipedia page on it open in my browser for a couple days now but I haven't gotten to it yet. Somehow I don't think it will provide any insight. 2008's Six months of nausea has left me with the impression that the entire field of gastroenterology has no idea what's going on either, unless you have an ulcer or diverticulitis. The one I'm seeing now, who says he understands Chronic Fatigue Syndrome had me wear a 24 hour holter monitor. I don't understand why yet. He doesn't think my "moderate dysbiosis" matters or that there's anything to bacterial overgrowth and good and bad bacteria.

I got a little upset with my mom on the phone. She asked how much I weighed now and when I told her she gasped and said, "Oh Alison! You have to do something about that!" As if I hadn't been trying. As if it hasn't been my number one priority. As if I wanted this. She said that's not what she meant, and I know it wasn't but it felt like a very accusatory reaction and reminded me of my gynecologist visit last month:

"You've lost 5 pounds since your last visit. You can't afford to lose anymore weight. What are you doing about it?"

"Well...I'm seeing a new doctor now for Chronic Fatigue Syndrome and I'm on his GI protocol..."

"Well clearly it's not working. Have you been to a gastroenterologist?"

"Well I went to a lot of gastroenterologists in 2008 when I was really sick and none of them could find anything wrong with..."

"Have you been to see Dr. Pimentel?"

"Yes, he thought I might have AI pancreatitis, but then I didn't. And..."

"Well you have to do something. See another gastroenterologist. You can't lose anymore weight. You're skinnier than me."

I wondered what her excuse was but didn't ask. I was still reeling from my interrogation. How sick does a girl have to be to escape suspicion of being anorexic? Did she not understand that there was no cure for CFS? That you can't just walk into a doctors office and have your symptoms taken care of? The irony is that when this all first started in 2008 that's exactly what I thought. "Oh, nausea! Something normal and concrete that I can go to a doctor's office and get medicine for."

I told my mom I didn't really have any hope of any of my doctor's finding anything and that I'd probably just keep wasting away until they had to feed me through a tube. This upset her, understandably, so I had to explain that that was only my worst case scenario, and that it was far more likely things would work out like last time. I'd slowly start getting better by accident, or for an unknown reason.

Doctors and therapists are always asking, "What do you do to make your fatigue better?" and I want to laugh at them. Why not ask me what my favorite dance moves are when I want it to rain? My acupuncturist will give me a treatment for fatigue, and when I come back a few days later she'll ask, "How has your fatigue been?" and judge the success of her last treatment based on my answer. I always try to tell her that that's impossible. There is so much that can effect my level of fatigue, and most of it is a complete mystery to me. There are some things I know. It's "cyclic", that word's often used to describe the unpredictability of CFS. I know there's a cycle around my period, I feel worse before it and better after, but there's a whole other mysterious cycle besides that. Something on a much grander and more complex scale. But what controls it? I have no idea. Or is it actually lots of little cycles all going on independent of each other? It's like trying to calculate the orbits of all the planets around the sun without calculus.

Last year when I was reading The Canon, "a whirligig tour of the Beautiful Basics of Science", I was surprised to find a discussion of alternative medicine in the section on probability. It's quite interesting:

John Allen Paulos proposes that regression to the mean could explain the legendary Sports Illustrated jinx: the long-standing observation that quite often, after an athlete appears on the cover of Sports Illustrated, that person goes into decline, fumbling the ball, botching the serve, assaulting the fans. Such unstellar turns could result from the pressures of fame, or a superstition subsumed into self-fulfulling prophecy but Paulos thinks otherwise. "When do you appear on the cover of Sports Illustrated? When you've done extraordinarily well for a period of time and are at the top of your game," he said. "By implication, you're not going to be able to maintain your outlier status for very much longer." You are going to start regressing, however slightly, back toward the mean streets of the mean.

The same might be said for many a miracle cure in the annals of alternative medicine. People often resort to alternative therapies when they have been ill for some time, and have failed to find relief in a mainstream medicine chest. They are at their wits' end, desperate for relief. A friend recommends bee pollen, or shark cartilage, or powdered bear carbuncle, and they decide to give it swallow. A week later, they're largely healed; after two, enzealed. Why didn't their physician recommend bear carbuncle in the first place? Was it because the pharmaceutical industry can't patent or profit from it and so hasn't distributed educational literature and free samples? Or was the doctor too narrow-minded to consider a therapy that looks like the sort of thing you can order through the back pages of the Utne Reader? Perhaps. Or perhaps the cure had nothing to do with the ingested novelty item, and instead represented another instance of regression to the mean. After many weeks precariously poised on the outlier tail of illness, people slip back into the comfortable lap of health, the physiological norm that our immune system grants us most of the time and that we take for granted until it is gone.

Of course with CFS, the comfortable lap of health is gone, but I still keep adjusting to new means, or baselines, each slightly lower than the last.

This phenomenon is why, when it comes to cause and effect with this disease, I've come only to trust measurements in the extremely short or long term. If I have nausea for six months, I take a pill, an anti-fungal, and immediately feel a change that slowly progresses, then I will attribute it to that pill. (A gastroenterologist who did not believe a fungal infection could possibly be causing my symptoms said it must have been a coincidence. It looked like it was hard for him to say.) If I do an exercise test and feel poisoned the next day, I might feel safe in attributing the poisoned feeling to post-exertional malaise. As for the really long term, it's useful for showing how I am progressing, (or not progressing). How I feel now compared to how I felt a month ago doesn't tell me nearly as much as how I feel now compared to how I felt a year ago. It's the time I'm logging here, the weeks and months, that don't really matter. They are diagnostically useless. Still I have to live in them.

That said, it was a great relief to get this e-mail from Dr. Cheney's assistant on Monday:

Hi Alison,

Per Dr. Cheney:

1. Protease can cause nausea. Discontinue it.
2. Use Wormwood only. Swish and spit. (meaning don't take the artesunate)
3. Hold Kefir for now.
4. Try Diflucan 200mg per day for 10 days and see if it helps.
5. Be careful with your diet.
6. Have blood work done. (We will send script.)
7. Schedule phone call after blood work results are in.

Yes! A plan! With numbers! And bloodwork! Is that shimmering I see just over the next hill the Glimmer of Control?

I'm a little uncomfortable stopping protease, since it is supposed to help with pancreatic enzymes, which I am low on. And I'm not excited about stopping the artesunate since I'm taking it to kill pathogens, but...if it's hard on the stomach then fine. I took my first diflucan, the anti-fungal that helped last time, this morning, but I'm not really hopeful. I haven't gotten into it here, but this 2010 nausea is a little different than 2008's.

Anyway, after a week spent in agony, and a weekend spent in bed, these last few days the nausea has been a lot more tolerable. Is it because I stopped the kefir? Is it because I stopped the protease? Or was it something else? A little drama inside me, mysterious, of completely unknown and unfathomable etiology, beginning, climaxing, and fading away?

I have no idea.