July 24, 2014
Early morning again—this time 5:25 am, unable to sleep.
I finished my course of prednisone, tapering completely off it a few days ago. Today will be my third med-free day since about March 6, when I was diagnosed. The pred helped…for two weeks, then I had an awful flare. It seemed to be triggered by more fiber in my diet, then to continue with the tapering off the med. By the end of the med, I was worse off than when I began.
It was so frustrating. During the 2-week flare, I sank back into depression, feeling like I was digging myself out of a hole that was filling in faster than I could dig. Not real depression—I laughed, I distracted myself—but despair. Then my mood improved a few days ago, maybe the second-to-last day on the pred, when I got my energy back.
I emailed my doctor asking what I should do next. He rattled off more meds to try. I’m waiting to see if diet can help instead. It feels untethering, to not be grounded in Western medicine, but also empowering. Scary, daring.
We’re moving to Portland in three weeks. I talked yesterday to a naturopath there, wanting to build a relationship before we even move. It was a hope-building session, a blessed relief. She actually made a plan for me: one that includes diet, and supplements (turmeric, fish oil, vitamin D), and meditation, and some medicine. Her goal is to get me into full remission, med-free. She says it’s possible; she hopes it will work for me; she’s seen it work. She wants me to change one thing at a time, to see how my body responds.
It was the first time, since this whole thing began, that I’ve really felt taken care of by a doctor. She was actually looking at the whole picture, like I am—my chronic knee inflammation, my seborrheic dermatitis—and trying to get me truly healthy. Except that she’s knowledgeable and trained, while for me it’s been overwhelming to have the burden of being my own case manager, reading all my books and websites, scrambling, while sick and tired, to dig myself out. I felt taken care of. It makes me so mad that my generalist PCP, who’s supposed to be that person, is so unavailable and disinterested. She never emails me back unless I email her and call her half a dozen times.
It’s a week of transition. This is our last normal week in our apartment, and I wonder if this place, like Mom and Dad’s house in Pullman, will be one of our favorites we’ve ever lived in. Our first home together, and so beautiful and light, and with the lake swimming before our eyes every moment. How could it not be one of our favorites? It still doesn’t feel really real that we’re leaving. There’s a sense of permanence, entrenchment. This place is us. It is Bear and Kili. How could things ever change?
The warm sunlight just turned on, lighting the windows of the sunroom, shadowing the little fluffy clouds in grays and whites. The water is smooth glass in places, rippled fabric in others. Seagulls wing past. Distant traffic moves, the hum of a faraway train. A fish slaps the water. A gull crows and yodels. The sky is pearl, yellow-cream on the horizon, deepening blue above. The air is still cool.
In a few days we’ll drive to Michigan to say good-bye to Ron’s sister, then when we return we’ll start boxing. All these books will come down. It will all be dismantled. What will that mean? Who will we be, without this place?
What always makes me feel better is thinking of Portland: the mountains, the ocean, the forest, Mom’s house. I get so excited sometimes.
We need faith in ourselves. Faith feels like skating across a frozen lake when you don’t know how thin the ice is. I need to just believe that we can earn more, be healthier, in the next few years than in the last few. That this naturopath will help me and it’s okay to be off the Western meds—that only 2 BMs yesterday means I’m on the right track. That people will hire us—that we’re not broken and worn-down thirty somethings, but are experienced and talented and desirable. That this strong, intuitive feeling that draws me inexorably to Portland is correct. That if we follow my intuition, things will all work out.
This is what I got out of bed for: to write this out and thus make it real and manageable, just the logical, predictable stress of a thirty-five-year-old in transition, childless but wanting a child, jobless but wanting a job, soon-to-be without a home base, even without my health. Of course I’m up early. It’s a wonder I’ve slept so well most nights. But it’s really not alarming, or even worrisome. I am likely to become healthy—there are many things I haven’t yet tried, and I’m doing everything right. My chances are good.
