Thursday, January 14, 2016

Fear is not magically delicious

Some of the difficult terrain I navigated on my first hike of 2016.
For the past week, I've been less unstable than usual. No, not my personality, it was my walking. I'll leave it to others to judge my emotional stability.

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?


  1. Bummer. The cards are dealt. It is how you play them. My rabbit's foot? I believe in myself.

    I have learned from long experience that things should be looked at straight on. If I have not done that, the thing has invariably come and bit me on the bum. Knowing what might happen will not head off it happening but one is prepared and better able to ward off the consequences.

    Whenever there is a claim of heightened risk I want that risk to be put in context and I want to see the maths; and I always remember that no matter how long the odds: lotteries make tens of millionaires a week; no matter how short the odds the thing never happens to many many many people. I shouldn't 'forget' about the things you can't control. confront them; grokk them; and then shelve them but don't ignore them.

    As I type the photo of you by the graffiti HOPE is also in my vision. I think that very appropriate.

    Steve Watson

    1. I don't really need a rabbit's foot, but I need something to give me a sense of control. Getting cancer tests does that. In about a year, I'll pass out of the 2-3 year period of elevated risk, but according to my previous research, it'll return to baseline.

      I've already beaten huge odds, but that doesn't affect whether I'll develop cancer. It's possible to win the lottery and be hit by lighting. ;-)

    2. I meant to write it'll never completely return to baseline. Doh!

  2. "Whenever there is a claim of heightened risk I want that risk to be put in context and I want to see the maths; and I always remember that no matter how long the odds: lotteries make tens of millionaires a week; no matter how short the odds the thing never happens to many many many people." Yes, but for many many many people the lottery is a hope, and often the last...

    1. I was the one who discovered I might have dermatomyositis via Dr. Google. I fit to a tee almost all of a long list of possible symptoms. But I was comforted by the fact that DM is so rare. What were the odds I actually had it?

      My dermatologist laughed at the suggestion that I had DM because of its rarity. My rheumatologist, however, told me I was smart for suspecting it. Yet she said DM was only the second most likely diagnosis. Instead, she thought I probably had a more common condition called psoriatic arthritis.

      A condition may be rare, but a few people are going to be the unlucky ones. I happened to be among that unfortunate cohort.

      Of course, the odds were very heavily against me surviving my coma and multiple strokes without any cognitive damage whatsoever.

      I'm not good at math....


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Coma Girl

Coma Girl

Not a miracle recovery, but a miracle of modern medicine

In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.

I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.

But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.