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: 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."