Tuesday, September 29, 2009


Since the start of the summer I have cut down most of my supplements by half or more. Half the iodine, one third the Vitamin D, one third the zinc, one third the herbs for my liver. Before I’ve cut my vitamins down and then just had to increase them again a few weeks later when my symptoms flare up, but this time that hasn’t happened.

In fact, I am feeling better and better. After four months on Rocephin, things that used to tire me simply don’t, and my energy feels steadier throughout the day. I go to the gym and push myself and instead of collapsing later, I can feel my endurance improving.

I have moments when I catch myself in the simple reassurance of the strength returning to my body, and realize I have an unquestionable feeling this strength will get me over this illness. I imagine myself free of taking pills around the clock and going to doctors, and I wonder if I dare to trust that life will come through, just this once, on the promise it holds out to me. And then it turns to a prayer: O please, let things be straightforward this time.

Sunday, September 27, 2009


Carolyn Humpreys once sold me a fermented soy liquid that she considered an elixir. She had just received a shipment of this brownish grayish drink and told me I should try it for whatever problem I had at the moment. “It’s so nutritious. It stimulates your body to take care of whatever’s wrong,” she said.

My attitude towards supplements is mixed. On the one hand, the right supplement can work wonders for all sorts of problems, from headaches to insomnia to bad breath. On the other hand, once you’re up to twenty different supplements a day, the cost adds up as does the hassle of remembering to take them all at the right time. So when the prospect of taking a new supplement arises, I think twice.

In this instance, Carolyn’s enthusiasm for the soy elixir was so great that she won me over.

“The people I’ve put on it are doing really well. You might even be able to drop some of your other supplements just from being on this.”

I bought two bottles and put them in the refrigerator when I got home. When I opened one, I found the taste was a mix between old gym socks and cat piss.

Over the next week I tried to remember to take the soy stuff at the right time—or at any time. But since it was out of sight in the refrigerator, and since it tasted so disgusting, it was easy to forget. In the end I decided to accept reality: I wasn’t going to drink this stuff.

Carolyn was completely understanding at my next appointment, and took back the unopened bottle for a refund, but what to do with the opened bottle? I knew she couldn’t give me money for it, but I suggested she might have another patient who would want it—the stuff was expensive and I didn’t want it to go to waste.

“I’m not allowed to do it for health reasons,” she said. “What about the Poet?” The Poet [my boyfriend] was also Carolyn’s patient and just so happened to be out in the waiting room.

“But he doesn’t have Lyme. It can help him with ________?” I asked.

“Oh yeah,” Carolyn said. “It helps with all sorts of problems.”

I was still skeptical. “I don’t know, given the way it tastes it’s going to be hard to get him to take it.”

“You never know. Some people love the taste.”

“You’re kidding,” I said.

“No, if your body needs it, your brain can sometimes help you out. I have people who swear this tastes like chocolate. All kinds of people tell me supplements taste like chocolate.”

Feeling a bit like I was in a Life cereal ad, I followed Carolyn out to the waiting room and offered the soy beverage to the Poet.

“You might really like the way it tastes,” I said helpfully. He looked interested. We poured out a tablespoon and he put it to his lips. He swallowed.

“Well?” I said, eager to see if Carolyn’s theory was true, if this was a real elixir that would solve all the Poet’s problems, make his brain turbo charged and his body full of energy, sleeping soundly at night and waking each day full of happiness, and if that were the case, would his taste buds tell him the drink was like chocolate and cry out for more?

“Well?” I asked again.

“That’s disgusting,” The Poet said.

Carolyn nevertheless told him what a panacea it was, and since the price was right (free) he was enthusiastic about it. He even, if I recall correctly, gave me some money for it. We took it home again and he finished the bottle, and perhaps, among the other supplements he was taking, it contributed to the gain in health he had while he was going to Carolyn. Who knows.

Last night I remembered Carolyn and this incident. Around 10:30, I mixed up a drink of filtered water, powdered algae (cracked-cell-wall chlorella to be specific), a few drops of silica with sunflower oil, and a few drops of electrolytes. I drank it, as I do every night at bedtime.

Throughout my life I’ve had many memorable drinks: a Newcastle Brown Ale after a long rugby game, dark hot chocolate for breakfast at a hotel in Paris, the grapefruit soda sold at street stands in Buenos Aires, and in Mexico I liked to sweeten my cafĂ© con leche with the full-flavored black sugar I found at the market. But last night as I drank the mix of algae and silica, I thought, that tastes really good.

And then I realized that I had just thought that— about algae. It didn’t taste like chocolate, but it was good. I actually enjoyed it. Carolyn’s theory must be true after all.

Tuesday, September 22, 2009


When I started this blog, I imagined I would write things in real time. The problem with this idea is that real time is happening in real time. When David visits, I am face to face with my limitations, and also the breakthroughs I’ve had since his last visit, and I want to write it all down, but there isn’t a moment to make it to the computer. Likewise for so many days and moments, and this has been my pet frustration as I slowly, steadily recover from this terrible illness: not enough time to write. Days are still full of the hassle of being sick and having to constantly take care of my body, even as I have more strength and feel better throughout it all.

In DC Last week, amidst a few days of nausea, a weekend trip to dear friend's and packing my small personal pharmacy to head back to Seattle, I managed to do something I’ve been postponing for a long time: put together the two quilts I have been working on. This requires floor space. That is, somewhere besides my tiny apartment, so I got it done during the stay at my parents’. I asked my mom to take a picture, and haven’t had a chance to post it until now.

I highly recommend anyone who is sick take up some kind of craft activity. Quilting was great for me because I could do it in bed during the long dark years when I spent most of my time there. It was the one thing I could count on to keep me calm and happy, no matter how bad things got. Now it still brings a sense of solace and accomplishment to stitch for half an hour before I go to bed, especially after a long hectic day of appointments and sorting out miscommunications between doctor’s offices and pharmacies.

Thursday, September 17, 2009


Here's one article in the New York Times that sheds some light on Max Baucus's plan.

No government option.
No requirement that employers provide health insurance
No Medicare negotiation on pharmaceutical prices
Government subsidies for the poor and lower middle class who would be required to buy private insurance (= a tax-dollar funded subsidy ending up in the hands of private companies)

Yes, there are some taxes here and there on the insurance companies, just enough for them to have something to protest about so it doesn't look as if they wrote this bill themselves.

No wonder health insurance stocks rose yesterday.

I am going to call my Senators and tell them I hate this bill!

Wednesday, September 16, 2009


Written a thousand miles off the ground and posted later.

Physical therapists are the bomb. Physical therapy for my tendonitis has been a godsend, and in the process I have learned valuable things, like how wearing clunky, unfashionable shoes can make you happy.

In fact, I now have two physical therapists. The second one is the amazing Liz Waldner, who is helping me with my stiff neck, headaches, tight jaw, teeth grinding, et al. She has been working with me to shift out of the rounded back, head-thrust forward posture I tend to slip into when I am reading, writing, etc.

(You must be thinking that I go around hunched over like a Quasimodo, but that is in fact not the case. Or so Liz has reassured me. “We all do this,” she says.)

This all relates back to my latest obsession, Lymph Drainage. Ever since I stopped dancing I have had terrible problems getting my lymph to drain. Lymies know the symptoms: headaches, swollen lymph nodes, that congested feeling in the armpits and the groin, general malaise. On Rocephin it’s gotten worse, and I am compelled to do huge bouts of exercise daily just to keep the systems in my body moving.

According to Liz posture plays in as well. If I can keep my chest open and neck straight, the lymph will drain more freely. I have been noticing this is true over the past few weeks, and I have tried, whenever I remember, to engage the middle back and drop my tail bone down just a little while I am sitting. This brings the shoulders gently back and opens my chest. I always feel better until I slip back into my habitual hunch.

I think over the past two weeks in DC my posture has gotten a little better—at least enough to for me to now notice when I am really uncomfortable and doing my lymph a disservice. For example, when I am typing at my laptop computer: totally hunched up.

And now today, on the plane home to Seattle I have had a revelation.

I have always been miserable on planes. I get blinding headaches, preventing me from reading or watching movies to pass the time. I also have become violently ill from flying. On one terrible flight I sat through a particularly rocky last twenty minutes before landing trying desperately to hold onto my cookies. I tried to put my head between my legs to help with the sickness, but United Airlines no longer accommodates such luxuries—my forehead hit the seat in front of me. So instead I put my head in the aisle. The stewardesses bumped into me as they strode past, but it was better than the alternative.

We landed to everyone’s relief except mine. Instead of getting better, my nausea got worse. Then we sat and sat, waiting for a gate to open up. I fumbled for the airsickness bag just before I lost the contents of my stomach. Not feeling much better, I shakily pulled down the tray and put the bag, hoping a stewardess would come by. I rang the bell, but evidently no one was allowed to get up in that situation, because no stewardess arrived. For an endless ten minutes as we waited to be allowed out of our seats, I sat with a bag of my own vomit on a tray in front of me. No one asked if I was OK.

So needless to say I don’t look forward to airplane trips much. To add to my apprehension about today’s flight, I’ve had headaches and nausea over the past few days without even coming near an airplane. I managed to get over the worst of it, enough to think it might be OK to fly, but not enough to feel happy about it.

As soon as I took my seat a headache started up. We hadn’t even pulled away from the gate.

I noticed that the head cushion (unremovable) was thrusting my head and neck far forward and forcing my back into that terrible hump. There was no adjusting possible. Was this really causing all my trouble?

The night before my brother had given me a midsized hardback novel he thought I would like (Michael Chabon) and I had hastily thrust it into my backpack on my way out the door. I had little hope that I would read on the plane, but it turned out to be the best move I’ve made in a while.

Sitting hunched up in the ergonomically evil airplane seat, I thought of the book (who wouldn’t?), pulled it out and placed between my back and the seat. Voila! My back was brought forward just enough, I could now comfortably rest my head against the immovable cushion behind and everything was in alignment. I felt much better.

As it turns out, due to Swine Flu there are no pillows on airplanes anymore, so I have spent the entire flight with my brother’s book behind my back. And I have felt great! Tony the Tiger Great. Thinking happy thoughts, no headache, and hardly any nausea. (For that I have some fiber and charcoal capsules and they are taking the edge off. The nausea is only an indication that the lymph is draining, down into my unhappy stomach.)

Reading my book is, of course, not possible, but fortunately I wasn’t planning on it anyway. I brought my quilting on board and I have been stitching away, until I was inspired pull out my computer and write this post. Using the laptop is not ergonomic nirvana, but with the hardback in place it isn’t giving me a headache either.

Friday, September 4, 2009

Chronic Lyme Gets Mainstream Attention

I am a secret fan of Diane Rehm. Way back, when I thought what I had was chronic fatigue syndrome, she did a show on it. Now she's done a show on Chronic Lyme.