Wednesday, January 21, 2015

A double-edged sword

Today is P-Day: The day I took my last dose of prednisone. It feels like we should be throwing a party.

Steroid medications are a classic double-edged sword; the cure is often worse than the disease. That's not quite the case for dermatomyositis, since before the advent of prednisone the disease was often fatal. Still, my treatment has come at a high price, and I'm not talking about the cost of the medication, which is dirt cheap because it's been out of patent for so long.

The worst things prednisone did to me, hand's-down, were the multiple strokes on both sides of my brain and the six-week coma the strokes caused. The immunosuppression triggered by prednisone weakened my immune system just as we were preparing for our trip to Sicily.When my dermatologist put me on a stronger dose, and my muscles started to strengthen, prednisone seemed like a godsend. Keith almost canceled our trip after my diagnosis because he feared that I would be too weak. He wasn't far wrong.

While in Sicily, I was shocked to discover how weak I still was. DM damages the proximal muscles in the legs, including the hips and buttocks. Not only did I have difficulty with stairs, but my legs would frequently go out from under me on steep steps. I would take a step and suddenly find myself collapsed on my haunches. That was a real problem when boarding and disembarking tourist buses. When I tried to board the funivia to Mt. Etna, my legs once again gave out on me. I lurched forward and hit my head on the pole in the middle of the car as the funvia continued on, heedless of my downward trajectory. On the way back, I collapsed again, and as we pulled away, we saw a guy talking into a walkie-talkie. When we reached the bottom, the car stopped to let me off. The man had obviously been calling ahead to warn the people down below. Indeed, I fell so many times on Etna Keith that joked, "We're banned for life."

Acting as a human weather sock on Etna. It was extremely windy up there.

Even so, without the increased prednisone dose, we might not have been able to walk up the steep hills to all those wonderful ancient ruins we loved so much. There were still places that I couldn't go, but I was able to do far more than I thought I could.

While we were staying on Etna, I developed my first symptoms of listeriosis, almost certainly caught by unpasteurized cheese I had unwittingly eaten. That should've been a warning sign, but I had never been told to watch out for immunosuppression-related illnesses.

The view from our balcony on Etna
When you read about Legionaires' disease, the first thing they often mention is that immunosuppressed travelers are among the most at risk. When I was first put on prednisone, I looked up the side effects. Among the long list--many of which I've since experienced--was a compromised immune system. But no one warned me to watch out for symptoms that would've been minor before I started my treatment.

So, when I developed a hacking cough in the waning days of our vacation, we thought nothing of it. Mussolini's Revenge, we joked. But a few days after we returned home we learned that it wasn't such a laughing matter. After I had spent all day in bed, Joella realized something was wrong and she called Keith. He rushed home from work and found me still lying in bed, unable to dress myself. When he asked me why I hadn't turned on the air conditioner, I said, "I like the heat." It was 105 that day, and I hate the heat.

Keith dressed me and rushed me to the hospital. It was there that I went into septic shock, which made my blood pressure plummet, causing extensive watershed-area stroke damage in my brain and putting me into a deep coma. Watershed damage tends to occur in the less vital areas of the brain and it frequently bounces back better than other types of damage. That's why my "profound brain damage" caused so few serious effects.

Six weeks later, when I awoke from the coma, I discovered that my dermatomyositis had gone into remission.

Flash forward several months. I was close to finishing stepping down from the prednisone when I starting experiencing severe withdrawal symptoms. We were returning from a rehab walk at the Los Angeles County Arboretum when I suddenly puked up the lunch I had eaten at the Peacock Cafe. These severe episodes continued until my rheumatologist slowed down my step-down schedule. I'm finally at that end-point again, this time without any withdrawal symptoms.

The list of all the side-effects the prednisone caused me would fill several blog posts. Some of them, like my osteoporosis, are serious and lasting, but as of tomorrow, I will be able to wave bye-bye to prednisone.

Good riddance to bad (but necessary) medications!

Wednesday, January 7, 2015

Real friends

Kristi Keller and I were both wearing our FOTMD pins at the Harvest Festival of Dulcimers last September. Keith and I missed the festival the year before because it would've been hard for me to lug the respirator around the church grounds. ;-)
Yesterday, I copied the pages from the blog (Geekling Status Update) Keith started on Friends of the Mountain Dulcimer (FOTMD) to inform my friends about the dire situation I was in when I was in the coma. At the time, my condition looked hopeless. My FOTMD friends offered hopeful messages, condolences, and prayers. They did their best to buoy Keith's emotions through this nightmarish situation. I've only gotten hints at the kind of despair he went through as the doctors said there was no hope for my full recovery and referred to what would happen when, not if, I went into cardiac arrest. Keith is a highly rational person, and he based his hope not on emotion, but real evidence of my gradually improving awareness. At least some of my FOTMD friends, understandably, thought he was probably kidding himself, though they remained hopeful nonetheless. And when I did wake up from the coma, against all odds, they continued to offer us support and encouragement, not to mention innumerable virtual hugs. A few of them sent me get-well cards, which hung on the wall of my room in the nursing home, offering me tangible versions of those cyberspace hugs. Re-reading the posts as I saved them brought back the memories of how moved I felt when Keith told me about the love my FOTMD friends sent my way while I was the coma. It's returned a thousand percent; I'm smiling now as I type this. They have continued to stick by me during my long and difficult recovery.

FOTMD will soon be moving to a new web host. And due to the huge outpouring of support from my FOTMD friends, the two threads most concerned with my recovery, Greetings for Geekling--started by Carrie Barnes shortly after my awakening--and Gadding about with Geekling, are among the largest data hogs on the site. Strumelia, the founder of the site, asked members to remove any content that they no longer care about before the move. I do care--enormously--about these threads, as well as the posts in response to Geekling Status Update, but I realized that removing them would make the move easier and eliminate the cost of storing all of that data. So, I've been furiously saving the pages from the threads. I will eventually be posting the archival content on this blog for anyone who is interested, but an era in my life is about to come to an end.

On the Gadding about with Geekling thread, I've been posting photos taken during our rehab walks, accompanied by (usually) short essays about the day. I will soon be posting them here instead. For my Facebook friends who have been following my recovery and also giving me tremendous support, they will get a chance (if they so desire) to read my essays, which a number of my FOTMD friends enjoy, as well as see the additional photos that I post there. (Keith always posts some photos directly from his phone to Facebook.) I also post various recovery-related news on the "Gadding" thread that doesn't make it to this blog or Facebook, These tidbits might be of interest not only to my Facebook friends, but also to people experiencing their own recoveries, as well as their loved ones. Now, more people will be able to read these.

And my friends, who have stuck with me from the darkest days on, will still be there for me. Though I've never met most of the people on FOTMD following my recovery, they're very much real friends. Just like non-internet friends, they have put up with my kvetches, laughed at my jokes (or groaned), consoled me and continue to cheer me on. They're what puts the friends in Friends of the Mountain Dulcimer, and I'm more grateful to them than they will ever know. (I borrowed the smiley from FOTMD.)

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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.