An entry from my journal, 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 and therefore my life back. My summer.
I emailed my doctor asking what I should do next. He rattled off more meds to try. I’m waiting. It feels untethering, to not be grounded in Western medicine, but also empowering. Scary, daring. I talked yesterday to Jeannie’s naturopath in Portland, wanting to build a relationship before I even move there. 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. Like 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 PCP, who’s supposed to be that person, is so unavailable and disinterested. She never emails back unless I email her and call her half a dozen times.
It’s a week of transition. Along with that hopeful naturopath appointment, yesterday was Ron’s and my last Reach Out forum, a forum I volunteered to organize and run. It was small, maybe 15 attendees, but felt good to once again be comfortable standing in front of the group for the first time since before Dad died. I have finally recovered. It was good closure.
Just before the forum, another piece of closure: I finally, finally sent the long email to a supervisor at the DNR that I’ve been composing for years, detailing Ron’s and my frustrations. Jeannie and Mom have gotten so many iterations of this email as I rewrote and honed it. Now all that’s left is to send the other piece, the letter to even higher-ups making recommendations about policy. Yesterday morning I talked with the head of HR, who happens to be a friend. He was super-supportive. I wouldn’t exactly say sending these emails feels good, but I think it will be good to have sent them. Or at least, to no longer have not sent them, if that makes sense. For years, it’s been bothering Ron and me to have not sent something, not expressed, to someone, that we were wronged at the DNR. Expressed it to someone official and powerful. It’s still somewhat unfinished, because I’m curious how the supervisor will respond, and I urged her to contact me and offered to meet. But still, to set that whole thing in motion, to send the big piece yesterday–that was huge, the biggest step. Closure.
So yes, it’s a week of transition. At last night’s forum I said to a few people that this is our last normal week in our apartment, then after I said it I felt unsettled and sad. 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, the Unitarian church, Mom’s house. I get so excited sometimes.
There’s one stress, aside from the inevitable stress of transition. What got me up this morning was housing, and money. I decided last Sunday, in an epiphany, that we must buy a house this fall. We’ve been scouring Craigslist for rentals, and the market is ridiculous–one-bedroom apartments for $1800 a month. Ron and I can’t afford that! And don’t want to–we pay less than $1200 for our lakeside place here. But if we buy, we could get a full, 3-bedroom house with a glorious kitchen and a big yard for a monthly payment of $1300. It’s just not a good rental market–everyone is renting, fewer people are buying (though the good homes get snatched up fast).
This decision to buy was a huge relief. I want a nest in Portland. Somewhere Ron and I have the best chance possible of actually being happy there. A real try. Mom offered to help; we looked at houses online, made a list, found a realtor–all in a three-day span. It’s stressful–it is a risk. What if we don’t like Portland? What if we flounder, never get jobs, or get great jobs in Corvallis? What if we buy near Gabriel Park then get great jobs all the way across town?
It’s all backwards. You’re supposed to build a good, stable career, earn the money for a house, then buy, then have kids. That works well; that order makes sense. We’re skipping a big step, gambling that after we settle into our haven, then we’ll miraculously land jobs that can cover what we’ve bought.
I tell myself we’ve had a run of bad luck. We cobbled together a ton of kudos in Wisconsin: published a field guide, got in the news a bunch for Reach Out Wisconsin, had a beautiful wedding, made a lot of friends, did great in grad school. But the DNR ground the life out of us for a while, and Dad’s problems came calling, and possibly as a result of all the ensuing stress, I’m now in the midst of my own major illness. I would have been applying for jobs, since April–I really would. Instead I’ve been digging myself out of my hole.
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 my 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 the fact that we’ve published a book, and that I’ve got five years at the DNR on my resume, and that we’ve been on the radio several times and earned praise, will all help us build a career story that convinces people to hire us. That we’re not broken and worn down thirty somethings, but are experienced and talented and desirable. That this strong, intuitive feeling I have that draws me inexorably to Portland, and even to buying a house there, is correct: that God is pulling us toward something good, a haven, and 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-homeless, even healthless. 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. With help from my family, I do have the money to buy a house. I am very likely to get at least some job in Portland. We’ll find a place to live.