|Some of the difficult terrain I navigated on my first hike of 2016.|
As some point, my exercising and increasingly strenuous rehab walks/hikes became more about retraining my brain than merely strengthening my muscles. I was originally told that most of my leg weakness was due to inactivity during my six-week coma. But I eventually reached a level where I could walk longer distances and for far longer than I could before my coma. I realized that the stroke-related weakness in my right leg, which seems slight when tested by my neurologist, has a much more profound effect on my walking than we recognized.
Wobbling from stroke-caused vertigo has a major effect as well. My balance exercises have helped tremendously in that regard, mostly by keeping me from falling on my face. But some of my exercises are directly aimed at reorienting my brain, encouraging it to get it's little synapses in gear and get on with the business of rewiring around its damaged areas.
Thank you, evolution.
Though I've said that I had nothing to do with the early days of my recovery--evolution again--I can own my later milestones. That took hard work. And my recovery is still a work in progress.
Yesterday, I had a follow-up appointment with my rheumatologist. My labs are still good, and she told me that after my next round of tests in three months, I don't need to see her if they remain that way. But the conversation soon turned to a few nagging concerns I've had.
Unfortunately, she confirmed a suspicion I've had for a while. My dermatomyositis (DM) is not in remission, after all. It's simply being well controlled. If I had been in remission, she would've taken me off my meds. At least I was finally able to get off the prednisone.
So long, and thanks for the brittle bones and nearly fatal immunosuppression.
The good news is she said that the fact that I haven't gone into remission doesn't mean I might have an underlying cancer triggering my DM. That's been a worry since my DM was diagnosed. That's a possibility I uncovered when I first discovered that I matched a list of symptoms of DM.
I'd crow about the fact that I diagnosed myself, except it hardly feels like a triumph that I have this serious rare autoimmune disease.
I haven't looked it up again because I quit Googling the condition cold turkey. It always depressed me because there are some deeply scary aspect to it. The foremost of which is my increased cancer risk.
She recommended that I do what I can, but forget about the things that I can't control. Well, I have been doing everything I can, exercising and getting cancer tests. But I have a hard time letting go of the known unknowns.
I told her that I don't believe there's a higher power making things come out alright for me. I need that sense of control, even if it's not real. But I'm not about to believe in a great big genie in the sky to give me that comfort.
But what can serve as a rabbit's foot for someone who doesn't believe in fate or lucky charms?