A rocky recovery at a stony park

This time, I was strong enough for Keith not to spot me before I reached the steeper and slipperier section of the path to the wind cave.

Tumblrs: Rocky Peak Park

On our second visit to the stunning and strenuous Rocky Peak Park, we made like our Cro-Magnon ancestors by dining in a rock shelter. Just as they would've eaten their bagels. The rainstorm we were trying to avoid by hiking on Saturday

caught us unprepared on Saturday.

Typical Mother Nature, raining on our recovery parade.

Rocky Peak is extremely steep and the path is sometimes treacherous. It's so difficult that it's even hard on Keith's knees.

Still, I found that I was able to ascend the park's heights more easily than I could just a month prior. It was gratifying to note that my hard work at rehabbing was paying off.

After I had basked in the freedom of having the wind cave to ourselves by exploring the depths I could reach safely (see gif below), we stopped for a picnic. As it turned out, we had lucked upon an open rock shelter just before it began to rain.

It was a good thing we had left the cave because the path out of it would've become a Slip'N Slide. Dry, if not warm, we waited out the rain in our open-plan cave.

Descending on our first trip in February.

Unfortunately, to avoid the slippery slope of descended the path in the mud, we were forced to head back after our picnic, instead of heading deeper into to park, as we had planned. After all, last time, I got cocky and fell down on the descent, skinning my knee. And the ground was mostly dry.

But I'm sure the wildflowers already peppering the park appreciated the precipitation (say that ten times fast.)

See Tumblrs for more pics, including the wildflowers.

Admiring one of the natural rock sculptures at the park last time.

And here I was struggling to my feet inside the wind cave on this trip. It's a measure of how difficult my recovery has been--from the strokes, coma, and the previous dermatomyositis muscle damage--that even the ability to stand up from the ground using only a low rock as leverage is still something to celebrate.

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?

Zebraitis

In medical school doctors are taught, "When you hear hoofbeats, think of horses not zebras." It means that you should first consider more common diagnoses when confronted with symptoms. That makes sense...unless they're actually dealing with a zebra. Sometimes when doctors see zebras they only hear horses.

I've confronted this phenomenon repeatedly, as well as another common issue, the fad diagnosis. My two-year "walking pneumonia" when I was in my early teens was misdiagnosed as anorexia, which was first becoming widely publicized. I was still in the normal weight range, albeit near the bottom of the percentile. When the pediatrician said that, my mother told the pediatrician that I ate fine, though I had always had a small appetite. I'm actually notorious for my sweet tooth, yet I have a metabolism that people would sell their souls for (if souls actually existed). But the doctor couldn't figure out the cause of my persistent pneumonia, so he trotted out anorexia as the diagnosis.

It was allergies for a while until that too was ruled out. I was eventually referred to the pulmonary department. After a lung biopsy, they discovered that my lungs had been scarred by the mysterious virus that struck me when I was 11. Yes, my health has been bad for that long.

Years later, I found to my horror that I matched almost all of a long list of potential symptoms of dermatomyositis (DM) down to the last detail--included the disgusting photos of the characteristic Gottron's papules. Yet the dermatologist I saw laughed at the suggestion that I might have DM. He instead gave me a laundry list of skin disease diagnoses. Each area of rash had a different one. I forgot to ask him why I would suddenly develop these separate condition all over my body at the same time.

My muscles continued to weaken, and I was referred to a rheumatologist. She told me I was smart for identifying DM as a likely cause of my constellation of symptoms. But she thought DM was the second most likely diagnosis, behind the far more common psoriatic arthritis. She said if I had to have one, she preferred it to be psoriatic arthritis. After all my research into DM, I knew why. But when I returned home and looked up psoriatic arthritis, my heart sank. It didn't really fit my symptoms at all. The blood tests she ordered showed that I almost certainly had DM.

I was sent back to the laughing dermatologist for a skin biopsy to confirm the diagnosis. The dermatologist looked at my hands and said, "Now it looks like classic Gottron's papules." Actually, the rash had improved quite a bit by this time due to my treatment. He was obviously weaselling out of his cavalier dismissal of the possibility that I might be have dermatomyositis.

When I came down with Legionnaires' disease--thanks to the increased prednisone dose prescribed by that same dermatologist--and I suffered a series of strokes on both sides of my brain, which caused me to fall into deep coma, my doctors played the odds and decided I was a hopeless basket case. This is a related phenomenon to zebraitis. Most people in my situation never wake up, and if they do, they're left irreparably brain damaged. No need to listen to the reports of their loved ones of improving awareness. They all say that, doctors tell themselves. Just continue jotting down "poor prognosis" and move on to the next patient.

The problem with playing the odds with patients is that some will defy expectation or turn out to be a zebra, after all. Well, have a zebra, which is common enough that zebra is also a term for those unlikely diagnoses nonetheless suffered by a small minority of patients, like DM. But who's to tell which is which if you don't look?

I really wanted to be told I didn't have DM, yet a voice in my head told me that there were too many similarities with my symptoms to be a coincidence. That's why I kept bringing up the possibility to different doctors. And unfortunately, it turned out that I did have a zebra after all. My creatine kinase test--the one that diagnosed my DM--tested in the normal range when I first went to my primary care physician. I guess it was too soon. If the dermatologist had recognized my "classic Gottron's papules," treatment would've been started before the muscle damage had progressed. Or, if I had continued being tested, the muscle damage wouldn't have become so severe that I think I'm still suffering from it.

And, yes, it was most likely that I wouldn't recover from the coma. But because they were convinced that I wouldn't, they refused me therapy that could've hastened my awakening and reduced my recovery time. Every time I was moved or stimulated--for the MRI, GI tube insertion, or the move to my first nursing home--my awareness improved.

This is why I'm so eager for the development of bedside covert awareness detection using EEGs. There's no cure for zebraitis, but if it's cheap enough, doctor will have no excuse not to test the comatose. At the very least, they would be able to tell the patient's loved ones whether they're really aware or not.

When doctors play the odds sometimes it's the patients who lose.

Part Two: Finally, I have squat

In Part One, I've fallen and I can't get up!, which is part of my Scenes from... series I presented a vignette that played out on countless evenings before my dermatomyositis was diagnosed and treated with prednisone. It was the prednisone that lowered my immunity so severely that I eventually came down with Legionnaires' disease, triggering a cascade of serious symptoms, including sepsis, strokes, and my six-week coma. But that's another story.

Here is Part Two:

August 25th will be the second anniversary of Coma Day, the day I awoke from my coma. It's a bit of a cliche to say I had to relearn how to walk, but that's exactly what happened. I've certainly gone much further than my doctors' gloomy predictions at the time. But then, isn't hard to be better than "hopeless."

My body's healing mechanisms have played a major part in that recovery. Thanks, body! But it hasn't gotten there on its own. I've had to exercise that body intensely, and put it through difficult and often bizarre physical therapy exercises to get there. At first, the milestones came fast and thick. It seemed that every time my occupational therapist in the nursing home recommended an assistive device, by the time my loved ones had acquired it, I didn't need it anymore. We still have that swivel spoon with my name written on it. This was mostly my body's doing. Thanks again.

As my recovery progressed, though, physical therapy began playing a larger and larger role. Therapy and body worked together to help me walk again. But as my rehab has progressed, the recovery milestones have had a tendency to sneak up on me. These advances have been mainly won by exercise. This was the case for my new ability to take consecutive steps on stairs, as I detailed here: Every step I take, every move I make. That was an ability I lost even before the strokes and coma, since my dermatomyositis damaged my proximal muscles along my trunk, including the muscles in my leg, buttocks, and thighs (as I mentioned in Part One).

And here's where we get to the bit I set up by portraying my battles with squatting, which was one of the first things to go when I started to develop the symptoms of DM. Squatting was once something I did without thinking, to pet a cat, shovel the litter box, pet another cat, scoop a turd, clean up that furball, and, oy, here's the rest of it. Do they really have to walk while they're puking? Hey, let's see how many different surfaces I can cover!

Eventually, it got so hard for me to clean furballs that the other members of the family had to take over. (Even Karena, who feels like barfing herself when she cleans up puke.) But I fought to retain the litter shovelling chore because of Joella's bad back. She also has a bad tendency to bend over at the waist. Whereas I trained myself to squat to spare my own bad back.  Until I did that, I kept throwing out my back while shovelling the litterbox. After I trained myself to stop bending at the waist, my lower back pain, not coincidentally, improved. It became such an ingrained habit that I kept forgetting that I couldn't do it anymore. And then someone would have to come and pull me up from the ground. Sometimes that person was Joella, risking throwing her back out--the exact opposite of my intentions in continuing the litter shovelling. Though my muscles improved after my DM was diagnosed and I was put on prednisone, I never regained my ability to squat, then stand up again without aid.

A few days ago, however, I was reaching down for something I had dropped, when plopped into a crouch, just as I would when I had newly lost that ability. Crap! Now, what am I going to do. I looked around for something leverage myself up with. But to my astonishment, I was able to stand up without using my hands. I did it again to make sure it wasn't a fluke. Yup, the squat is back!

I can't squat long enough clean up puke or shovel litterboxes in our multi-cat, multi-litterbox family yet. But now it's only a matter of time before I will be able to. And when that finally occurs, cat messes will have never smelled sweeter! ;-)

Scenes from (Before) My Coma Recovery: I've fallen and I can't get up!

This is the first installment of a two-part post. First up: a vignette from when my dermatomyositis was in its active phase, at a time when I thought it was possible I had DM, but before it was diagnosed. The second one will be about an ability I haven't had since that harrowing time, which I'm finally starting to get back thanks to my rehab exercises.

A little background: DM damages the proximal muscles: arms, shoulders, hips, buttocks, and legs. I had begun using a plastic stool to help me push up from the ground when shovelling our multi-cat household's litter boxes. Soon, that too became next to impossible.

I was kneeling in front of the litter box, my right leg cramping against my chest. The left leg didn't hurt that much...at least until I tried to unpin it from the ground. I pulled the stool in front of me and pushed with all my might. Nothing. I tried again, leaning forward as I attempted to push myself high enough for my left leg to open up under me. But the leg seemed to be glued to the floor.

"Move, goddamn it! Move!" I said as I began to cry. A lightning bolt of pain shot from my hips. I pushed again. This time, I slipped, my leg plopping back down painfully as the stool shot to my left. I yelled out an obscenity.

The stream of obscenities continued as I stretched my arm out, scrambling to reach the stool's leg. Eventually, I managed to edge the stool close enough to grab it.

I squared the stool in front of me again. But my left leg would still not move. I tried again and again. Still nothing. It wasn't long before I began to panic.

"Help me! Please help me! I can't get up!" I yelled, or rather tried to. My ragged voice barely escaped my throat [another DM symptom]. But everyone was asleep, and even if my voice had been normal, the game room was so far away from the bedrooms. It was hopeless.

"Help!" I continued, anyway, as I sobbed. I tried yet again. This time I managed to get my left foot under my me, but I flopped backward, hard onto my butt. I had landed a few feet away from our large, three-legged cat scratching post. Each post had a different kind of scratching surface. I inchwormed myself with my legs toward the tree-limb post, which was the one closest to me. When I was finally close enough, I grabbed the post with both arms and slowly pulled myself toward the steep step that lead to the dining room. It was only a couple of feet, but it felt like a mile.

Not one of our cats--they're only grumpy when you're petting one of the other cats.

If I could make it to the step, maybe I could edge my butt up that way. One, two, three...ugh. I slipped down again. I tried again. Plop. It took several tries before I manage to get one cheek on the step. For a couple of minutes the edge of the step was wedged in the crack of my butt, before I finally managed to turn the other cheek, so to speak. I pushed up with my hands on the edge of the step and propelled myself forward.

My feet unfurled, and I was standing once again. Instead of feeling relieved, though, I started crying again, this time out of fear of what was happening to me. It was times like this that the voice in my head would whisper, "You probably have DM." 

Soon, the voice would be proven right.

The Three Faces of Steph

My room in Skilled Nursing, where I was immediately whisked after my trach was removed, was freezing! Note how thin my hair had already gotten. This photo was soon before I left the nursing home.

Google's new photo-storing service employs facial recognition algorithms to lump photos of people together automatically. It's a work in progress. Indeed, like something out of science fiction, it thinks I'm three people.

The first Stephanie consists of my BC photos (Before Coma). The second Stephanie is comprised of my coma and nursing home pics. The final me is the current one; all of those pictures were taken after I came back from the nursing home.

Now, you might think that it's only gauging this based on my hair, since it went from long to braided to short. But perhaps Google Photos is onto something deeper.

At Donnafugata Castle in Sicily, two individuals with full manes.

Stephanie One had only recently been diagnosed with dermatomyositis. Though her shoulders were still weak from the DM proximal muscle damage, she was reluctant to cut her long, thick, curly hair short, even though it was so hard to wash and style, because it looked really nice and she got many compliments on it. Though the muscle damage in her hips, buttocks, and legs had improved considerably, she was pleased that her dermatologist put her on a significantly increased dose of prednisone, since the higher dose was clearly making her stronger, and she was afraid that she was still too weak to walk through the ruins of Sicily that beckoned to her. Even so, when Keith and Stephanie arrived in Sicily, her legs kept collapsing as she attempted to board the steep steps on tourist buses and the Mt. Etna funicular. She had also lost so much weight during her illness that she needed the prednisone to help her regain the weight she had lost from her already skinny frame. She had a license to make Sicily an all-you-can-eat buffet!

But the strong prednisone dose weakened Stephanie One's immune system so seriously that she caught Legionnaires' disease and listeria while in Sicily. The gastro-intestinal symptoms of the listeriosis presented themselves immediately and are best left to the imagination. But the Legionnaires' disease triggered a severe case of sepsis, which dropped her blood pressure so low that she experience a series of strokes on both sides of her brain, causing her to fall into a six-week coma. Thus, she morphed into Stephanie 2.0, who came about as close to dying as you can get without actually "passing over," as believers like to say. She lost further weight on the liquid diet being pumped into her system. When she awoke, it was many weeks before she was allowed to eat solid food again. Her tangle-prone hair was repeatedly braided and rebraided during this period to keep it looking neat. Brushing is out of the question when you can barely use your arms or even lift your head.

When Stephanie Clone Three got home from the nursing home, she was forced to cut her now-scraggly hair short because she had lost so much of it while she was still Stephanie, the Sequel, due to all the detangling and rebraiding, plus weakened hair from the respiratory distress suffered during the coma.

Keith put her on a high-calorie diet because she was starting to look like a Holocaust victim. That worked all too well, as the notorious weight-gain side-effect of prednisone finally kicked in. Her normally thin, angular face rounded and her stomach began protruding--yet more prednisone side effects, aided by the weight gain. But her hair regained its naturally unnatural thickness. During this time, her nonfiction writing about her recovery began to be accepted by major publications.

Who will Stephanie Mark Four be? Well, the difference may be too subtle for Google Photos to detect, but finally free of the curse of prednisone, her weight edges ever downward as her face continues to shed the round "moon face" caused by the corticosteroid. Ditto her "pregnant belly," which birthed no joy. But those had already shrunk considerably, anyway. Stephanie Three is finally starting to resemble Stephanie Prime--the "normal" one, relatively speaking, before even the DM.

Stephanie Three is expecting her feature article to appear any day now in Skeptical Inquirer. She's also finished her latest essay for the humanist market, "Sympathy for the Devil-Believers," and she's about to send it out. Her essay, "Without a Prayer of a Chance," is tentatively scheduled for the October/November issue of Free Inquiry. So, even though Stephanie Clone Four might not look that different from her previous iteration, by the time she appears, the story of all four Stephanies will be finally out. And then there's the new essay about her DM, not to mention the memoir she's now preparing to write....

Dulcimer Therapy, Part One

Keith told me that he bought my Dorsey Williams dulcimer, which was his anniversary gift for me, while I was still in the coma. Seeing as he's also a dulcimer player, he would've bought himself a very fine dulcimer if I had died or never recovered enough to play it, as my doctors expected. But of course I did recover, and it's one of my favorite dulcimers now.

Before our vacation in Sicily, I hadn't been able to play as much as I used to before I developed dermatomyositis. The DM damaged my proximal muscles, including the muscles of my shoulders and arms. I could only lift my arms for about a minute before they would drop like a stone. I eventually stopped playing to rest my arms because I thought my problems were due to shoulder strain from using my laptop too long without adequate arm support. I had already quit practicing fingerpicking because the cracked and bleeding skin at the tips of my rash-covered fingers made it impossible. I hadn't yet connected the two seemingly unrelated symptoms.

Once my DM was correctly diagnosed, and the prednisone started to work, I was able to start playing the replica scheitholt--a German dulcimer ancestor--Keith gave me for my birthday. It was hard for me to tune because it had zither pins instead of tuning pegs, like a regular dulcimer. Keith dug up a ratchet to help me tune the pins because a regular tuning wrench wouldn't work with the non-standard size zither pins. The tuning remained difficult for my still-weak hands, however, and I had to use every ounce of strength I could muster. I had a lot of fun playing Greensleeves on the sheitholt, though. It seemed like an appropriate song to play on a replica of a 17th century instrument. And the challenge of learning a new song encouraged me to stick with it, playing for ever longer periods as my hands and arms slowly strengthened. The continuing raw state of my fingers and knuckles still prevented me from fingerpicking.

But before long, I started preparing for our trip to Sicily, and my playing time began to wane. When we returned, I was too sick to play. We all know what happened after that.

When Keith brought the Dorsey Williams dulcimer to the nursing home after my awakening, it was just to show it to me. I was too weak to actually play it. And when went I went home on a furlough several months later in preparation for returned permanently, I wasn't able to play it much because I had limited time on the furlough. I was still weak, as well, and my playing had become rusty. 6-week comas can do that to you.

A couple of weeks later, I left the nursing home with sheets of physical therapy exercises for my arms and shoulders. But the one I was most eager to pursue wasn't on the printouts.