Wednesday, January 27, 2010


And now in contrast to my good day of shopping and flying too close to the sun, here is a day that has just been bad upon bad. I didn't have to be anywhere until 4:00 today, so I didn't set my alarm. But I was startled awake at 11:30 after about eight hours of sleep by a loud phonecall which I let go to voicemail. Stayed in bed for an hour getting up the strength to get up. Brushed my teeth, took a carafate (day 7 of those, and they were supposed to start helping gastro symptoms in 5-7 days) and waited 20 minutes before I took my other medicines. I restarted my Protease enzymes which finally came in the mail. Took a shower and waited an hour before eating. Felt a little nauseous so instead of my usual thermos cooked cereal for breakfast, I thought I'd have the goat kefir. I remember kefir once helping me with nausea, though I don't remember which kind of kefir it was. I was also under the impression that since it was fermented it would be easy to digest.

It was not easy to digest. Terrible nausea and the next two hours spent on the bathroom floor waiting to throw up. Also lots of eructations that provided a little bit of relief with each one but it still kept getting worse. I can't believe I am writing about burping. Oh well, it's important to the plot. To make things worse this is the one day a week where I actually have a social obligation that isn't with a friend or a doctor. Since October I've been volunteering one hour a week as a tutor. This all was making me think back to 2008 when I was starting class again and my nausea first started, it never lead to vomiting though. It was just like a horrible, painful little storm in my stomach. I remembered crying in the car on the way to class it hurt so much.

I was hoping I'd be feeling well enough today by 3:30 so I wouldn't have to cancel on my student. And I was feeling a little better, but I was worried if I didn't eat something I'd be too weak to get through the session or even drive myself home after. I thought I would be safe just drinking one cup of vegetable broth. No calories, but at least it had nutrients and it would have to be easy to digest.

Drinking it made me a little late. When I walked downstairs and got outside it was a little colder than I thought, but I wasn't willing to walk back up the stairs to get a jacket. I got in my car, started the engine, opened the car door again and threw up broth on the drive way. How am I so sick that I can't even hold down a little broth? I debated whether I should cancel and just go back up to rest, but throwing up made me feel better so I decided to just go. After I'd been driving a few minutes I called my tutee (a word I feel funny using but I'd feel even funnier posting her name or making one up) to tell her I was running late. She gave the phone to her mom who said, "Oh didn't she tell you? We're on our way to the social worker. She was supposed to reschedule with you for tomorrow." I have doctors appointments for tomorrow, so it looks like we're skipping this week.

In my car and nowhere to go, I ended up around the corner at Nature Mart where I bought a small celery/beet juice with ginger and a gallon of distilled water. Normally Jim buy's all my water because it's too heavy for me to carry up the stairs*, but I wasn't worried because I planned on dumping half of it out on the drive way to wash away the vomit. It seemed a little wasteful, but if I wanted tap water I'd have to go up and down the stairs. And I have no idea how to access the hose and didn't feel like calling my landlord to ask. Anyway, water is water. The juice was my last attempt to get some nutrients in my body, and the ginger might help with the nausea.

Anyway, I'm getting scared that I'm not going to be able to eat anything. I can't lose anymore weight. Every day the scale reads a little less. I want it to start reading more. It's way too low already. I called my gastroenterologist, left a message, but I don't think he has any idea what is going on. I wrote an e-mail to Dr. Cheney's assistant. Probably won't hear from them until Monday. In the mean time on I'm on my own. Actually it seems like I'm always on my own.

I really didn't think my first two blog posts would be about throwing up. I hope this all gets resolved soon and I can start eating again. Not being able to eat is getting scary. I'm too exhausted to attempt to eat now but maybe in a few hours I'll try having a little rice.

*I try to only drink distilled water. Apparently it's the purest but it also tastes best. All the water hauling has penetrated Jim's subconscious, "I had a dream that you got a divining rod, and you said, 'From now on I only drink water straight from the ground!'

Monday, January 25, 2010


And now, just as you prepare to tell your own story, you hear another story, one you know will be with you as you make your descent.

This is one of the intros in Susan Griffin's memoir about Chronic Fatigue Syndrome, What Her Body Thought. It just came in the mail today. I call it an intro but I don't really know what to call it. It's not an epigraph, there are already two of those, one is from Dante. I don't fully know what it means yet because I stopped reading after the first few paragraphs. I thought it might have something to do with Dante, I think the word "descent" tipped me off, but when I googled it the only thing that came up was the book itself. (And now this blog comes up too.)

I wanted to recap this evenings events in my private livejournal and then go to bed. I was just going to glance through this new book first, see what it was like. I already had my livejournal window open and my subject line written when I opened it and started reading.

I found out I tested XMRV positive today. I'd already journaled about it earlier, just three sentences, about what little impact I felt, and how this lack of emotion must prove just how sure I'd been that I had it. I sent a quick email to my parents and my boyfriend, (who wrote back "Don't know if congratulations are appropriate, but...") Then I forgot about it. I went shopping. (One store, one specific item in mind, and out) Then I went to therapy, talked animatedly for an hour, but barely mentioned it. I talked mostly about how hopeful I was feeling lately about Dr. Cheney's protocol. Then I went to Erewhon to buy goat's milk kefir and bee pollen. I've been happy with the coconut milk kefir, but I kept hearing goat was better so I tried it, but the vegan in me felt wrong drinking goat's milk, said I was doing good on the coconut and should just go back to it. Then I read in The Body Ecology diet about how goat's milk produces mucus which lines the stomach and can soothe the intestines, which I need, so I decided I'd switch back. The bee pollen was because I am reading Superfoods and bee products are the fourth superfood. It's actually recommended on Dr. Cheney's blog. (The book, not the pollen.)

I came home and rested, pretty satisfied with how much I'd done. Then I wrote more in my journal, not about my successfully busy day, but my thoughts, sparked by this onion av club article, on how Conan O'Brien's exodus just shows that no one my age cares about The Tonight Show and its implications on what it would mean to work in television and all entertainment media in the future, etc, etc. The point is I was feeling pretty good. I was pretty sure it was due to the raw cacao beans I'd eaten (superfood #2) The first time I had raw cacao, at Cafe Gratitude in San Francisco, I was really, really, happy.

Then I went over to my boyfriend's and sprinkled bee pollen on my salad. A half hour later I was nauseous. I get nauseous a lot, but it hadn't been that bad in a few weeks. I did the drill, tried to think of everything I'd done different that day. ("My enzymes finally arrived...but they never made me worse before...I had coconut water kefir AND goat kefir, but that was hours ago...can you have too much kefir...?") I knew it was the bee pollen though when I threw up. I often get nauseous but I never throw up.

Feeling defeated, I went home to drink some warm broth and get into bed, but not before quickly writing a private journal entry about what happened. In the subject headline I wrote "vomiting like icarus" and then came up with the sentence, "I threw up the day I found out I had XMRV." It went on, "but not for that reason" and I was going to write about how good I felt today with my superfoods and all, and how ultimately, it all came crashing down.

That's when I remembered I had a new book and my new-book-curiosity compelled me to read just a little. In the first chapter, she starts out saying she is here to tell a story, and describes a ride on the Metro in Paris, speculating on the other passengers conversations. That's the first paragraph. In the second she reveals that her own story "concerns an episode in an illness I have had for more than a decade." As I read on I find it's all so familiar. Not just the story itself, but the feeling of recognizing myself in it. I think of all the times and all the places in the last few years, blogs, essays, books, forum posts, where I've felt that crucial resonance. But this time was different, and it was different because of XMRV. I thought of my test result, and suddenly felt linked to her and all these people in a way I never did before.

When I read Stricken, I was in tears pretty much the entire time because I identified with these stories so much but had never actually heard them told. I even wrote down a list of quotes as I read that were strikingly similar to things I'd written myself in my journal. Tonight, beginning this new story reminded me that Chronic Fatigue Syndrome is more than just a disease; it's a community. It's over 20 years of suffering and striving for recognition, held together not just by a shared collection of symptoms, but by a shared experience.

When I was first told my XMRV culture was positive, I didn't react because I didn't know how. I'd been asking myself for months how I would feel when I found out, and what I wanted the result to be, even though I already knew. I read this quote somewhere from Judy Mikovits, who spearheaded the study, "You talk to CFS patients and they say, 'Thank God I have a deadly retrovirus. Thank you,' because now that makes their illness real. They aren't just crazy"

That is pretty much how I felt when I first heard about XMRV, but eventually the irony caught up to me. What is the appropriate response to being told you have a potentially deadly retrovirus? The answer I had come up with was, it doesn't matter, not if you've already been feeling the effects for years. It took me so long to convince myself it didn't matter that I didn't have any abnormal test results, so why should it suddenly matter now? And so maybe in that way it doesn't, if I had been one of the 2% who tested negative, not much would have changed. I would still be sick. Instead getting this test result feels more like getting a membership card or even a diploma. "Congratulations on getting your XMRV from the Whittemore Peterson Institute! Now the world will finally be able to see us."

As I was writing all this in my journal, it became clear that I was writing in the wrong place. I've had this blog all set up for weeks now, and I've been meaning to make the move. I sort of took that quote up there as my cue. I've been wanting to start a blog for years...but I've just never had the energy. These past few weeks though I've been able to write more than usual. So here is where I'm starting my story.

Friday, January 22, 2010

I Am Now Able

I am now able
to sleep twenty hours a day
The remaining four
are spent
telephoning a list
of important people
in order
to say goodnight

-Leonard Cohen from The Book of Longing