Weight: Giving Thanks for My Metabolism (Please Don't Hate Me)

Miracle Girl: Weight: Giving Thanks for My Metabolism (Please Don't Hate Me)

My weight has been feast or famine. But you probably won't empathize with me as visions of pounds gained dance in your head.

Maybe you can't be too rich. But take it from me, you can be too thin. 

So Always Look on the Bright Side of Death

Miracle Girl: So Always Look on the Bright Side of Death

Monty Python's Life of Brian is one of my favorite films. I can't count how many times I've seen the movie. It seems unlikely that it could've been made today, so we have the pre-Moral Majority times it came out in to thank for its release. Not that it wasn't a subject for protests, of course.

But I digress. My second Miracle Girl post is really about how life is indeed a piece of shit, when you think of it, as Eric Idle sang on the cross.

Yet atheists don't wonder why God put that shit in front of their shoe. And when a door closes, they don't wait for God to open a window. They do it for themselves.

And so have I, as I've coped with my illnesses in the last few years. Life's a laugh and death's a joke, it's true.

Your Fate is in Your Hands (except when it isn't)

The Secular Spectrum: Your Fate is in Your Hands (except when it isn't)

Today is my birthday, the third I wasn't supposed to live to celebrate. That is a present all in itself. But after my coma, I was given another gift--a do-over and chance to gain many more years.

That's because my recovery has goosed me into reforming my life and shedding many of my unhealthful and downright harmful habits. Because of that, I will probably live many years longer.

Though I already knew this, my illness(es) impressed on me the fact that you never know what monkeywrench life might throw at you. Though you have no control over that, you owe it to yourself and your loved ones to control what you can.

That's why I wrote my latest SecSpec post today instead of staying up into the wee hours of the morning to write it, just so readers on the East Coast could see it in the morning. When Keith stopped making my breakfast for me, he worried that I might start backsliding into my old bad sleeping habits.

He needn't have worried. Nowaday, I'm frequently the one who starts getting ready for bed first. I'm obsessed with getting enough sleep.

Maybe it was that six-week nap that did it....

SfMCR: A pain in the ass...literally

Sitting in a normal-size wheelchair.

Part of my physical therapy in the nursing home involved sitting. That's it. Well, it was sitting in a wheelchair. I wasn't given a seat cushion at first because they didn't have enough to go around. (John Silva eventually scrounged one up for me.) Without a pad, there's nothing but a vinyl sling below your butt.

So what, you may be thinking, director's chairs are fairly comfortable. Try sitting on one not for an hour or two, but all day. I wasn't yet strong enough to sit up that long, but I also had general pain that I attribute to my body getting used to being animate after my awakening. Residual muscle pain from my dermatomyositis might've contributed to it, as well. And then there was the bedsore just below the base of my spine.

But considering that my body wasn't up to sitting for that long, it wasn't that bad.

When an assistant physical therapist came into my room to take me to physical therapy and wheeled
in a double-wide wheelchair, obviously meant for the morbidly obese, I was merely amused. After all, my weight had dwindled under my liquid diet during my coma and many weeks afterward. I looked like a concentration camp survivor, my bones sticking out of my skin, creating pressure points.

I had already gained a few pounds by the time of my home visit in October, but you can see how skinny I had become as I attempted to play the wonderful Dorsey Williams dulcimer Keith had given me for our anniversary.

I'm really tiny to begin with. I'm only five foot tall, and small-boned to boot. What, they couldn't find a dump truck?

A few people we passed in the hall joked about the size of the wheelchair, which must've looked especially large with someone so tiny in it. Once in the "gym," as the physical therapy room was called, I realize that I was sliding awkwardly to one side of the wheelchair. I shifted my weight to try and find a comfortable position. Then I shifted again. And again.

After my physical and occupational therapy session ended, I was wheeled back into my room to perform the second part of my therapy--the sitting. The goal was to sit as long as I could to retrain my body to remain upright and get used to sitting in a chair.

The physical therapist is supposed to make sure you have the call button within reach before leaving. But they kept forgetting, and this time was no exception.

It wasn't long before my hips and butt started to ache. Then the shooting pains began, followed by pulsing waves. When I couldn't take it any longer, I started to pound on my wheelchair for someone to help me. No one came. As the pain continued to increase, I began to weep.

"I need some help," I kept saying, but this was after my speaking valve had been carelessly trashed, so what came out was barely a whisper.

Finally, someone passed in the hall and I called to her, pounding on the arm of my wheelchair to catch her attention.

She was a nurse. "What's the problem?" she asked.

"The wheelchair is too big for m." I ran out of air, as usual. "It hurts." I sniffled. "It hurts!"

"I'm sorry you're in pain. Where does it hurt?"

I pointed to my right hip and my butt.

"What would you like me to do to help you?"

"Give me another wheelchai." I took a breath. "Or put me back in be."

"I can't do that. I'll send for a CNA."

"Thank you." She put a box of Kleenex in my lap before she left.

I daubed my nose as I waited. And I waited some more, as lightning bolts of pain shot through my right hip.

When the CNA finally arrived, she propped a pillow under me. I was really determined to regain my lost abilities, so I didn't want to give up on my wheelchair training. It was worth a try.

But I continued to list in the cavernous depths of that enormous wheelchair. What's worse, the CNA also forgot to give me the call button. The tears started flowing again, I banged on the wheelchair, calling as best I could, as my panic increased.

When someone finally came, she tried yet another arrangement of pillows. At least this time, the CNA remembered to give me the call button, which before long I was forced to press.

"What is it now?" the nurse asked.

I reached for a Kleenex to wipe my running nose. "Please put me back in be..." Breath. "It hurts."

"I'll go get someone to help you."

Not again!

Another looooong wait followed.

But when a CNA finally arrived, she wasn't trained in transferring patience and she had to get someone to help.

I thanked them profusely after they slid me into bed by lifting the sheet underneath me. Finally, I was in bed, exhausted, still in pain, and emotionally wrung out.

The next day, I insisted the assistant physical therapist give me a small wheelchair. Still, a painful drama ensued when they left me in the wheelchair yet again.

But that's another story.

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.

Wearing the scarlet "A" (for anxiety)

My usually shapely calves look pillowy in this pic taken during my hospital stay. Note the blood pressure cuff left on my arm due to the constant heart rate monitoring.

I've had ADHD all my life. The H stands for hyperactivity, which is often accompanied by an anxious disposition. But having anxiety is not the same as suffering from an anxiety disorder. This propensity was probably what led my primary care physician to write anxiety disorder on my medical chart, after I began exhibiting high blood pressure whenever I saw him. When I tested my blood pressure at home, it was much lower, so I was diagnosed with white coat syndrome. That's when the label of anxiety disorder was added to my chart. I have to admit that I was the one who first suggested this diagnosis, since the only time I had ever had suffered from high blood pressure was when I experienced what was called a paradoxical reaction to a blood pressure medicine given to me because it can help control chronic migraines. Instead, I suddenly developed blood pressure so high that I could see the blood pulsing through the veins in my wrists. After I was taken of the meds, my BP returned to its usual level, slightly below normal.

But the problem with my self-diagnosis is that I didn't really feel all that nervous when I saw the doctor. My natural nervous energy does indeed increase my blood pressure readings somewhat, but I believe something else was going on.

This was in 2012, a time when I was beginning to show the symptoms of what would be eventually diagnosed as dermatomyositis. Indeed, the extensive rashes and muscle weakness I was suffering from were the very reason I had set up the first appointment. Unbeknownst to us, DM was in the process of attacking my muscles. The heart is a muscle.

But the damage was done. The label of anxiety disorder remained on my chart even after my DM was finally diagnosed. It rankled me every time I saw it in my after visit summary, but I never did anything about it. It was annoying, but seemed relatively harmless. That is, until I entered the hospital in February 2014, after coming down with a second bout of the (usually) rare Legionnaires' disease. Thanks, prednisone!

Beyond the Legionnaire's disease, which was fortunately caught before I slipped into another coma--been there, vegetated that--the ICU doctors were concerned about my soaring heart rate. Indeed, it was far higher than it had been when I had been mistakenly diagnosed with white coat syndrome. Tachycardia can be fatal, so the doctors were right to be worried. They tested me to see if it was positional tachycardia syndrome. In other words, if sitting up caused the problem. Nope. Their other tests could find no other cause.

And that's when one of the docs saw the words anxiety disorder in my chart. Aha!

He marched into my room, as Keith and I chatted, and abruptly told me that he was going to put me on an anti-anxiety medication.

I calmly told him that I didn't have an anxiety disorder.

"It's nothing to be embarrassed about," he said. "They're quite safe. Many people take these medications and find them very helpful for controlling their anxiety."

"But I don't have an anxiety disorder!" I insisted, my vehemence perhaps reinforcing his conclusion. "I have ADHD, which means I'm often hyper. Sometimes I do experience mild bouts of anxiety that pass quickly, like when I'm late for an appointment. That's a common symptom of ADHD. But having occasional bouts of anxiety, that don't affect my life in any real way, is not the same as having an anxiety disorder. No psychiatrist has every diagnosed me with an anxiety disorder." As I said this, I kicked myself for not doing anything about that galling diagnosis in my records.

"But we have to do something about your heart rate. It's too high; you're at risk for heart attack or stroke," he sputtered. Then he reiterated his previous comment.

Keith jumped in, "Could you please explain what qualifies you to make this diagnosis?"

"Her heart rate is dangerously high. We haven't been able to find a physical cause for her symptoms."

"And besides that?"

As Keith Socratically probed, it became evident that the doctor was simply assuming that I had to be suffering from anxiety. Suddenly, we realized why the doctors and other medical personnel kept telling me to relax. I was about as relaxed as possible for someone with a tube down her throat.

Round and round the conversation goes; where she stops, nobody knows. It didn't quite degenerate into shouting, but the atmosphere was charged enough to explain the hackles raised all around. Eventually, the doctor left, apparently miffed at how these two unreasonable people had reacted to his perfectly rational diagnosis. He struck us both as extremely arrogant.

But I will give him credit. Instead of pushing the point, he apparently went back and studied my charts more closely. And when he did, he noticed that I was on two very powerful blood pressure medications, at levels usually prescribed for heart failure patients. I had been taking those meds ever since I awoke from the coma, so I hadn't questioned them. He couldn't have known about my previous paradoxical effect experience because it happened when I was with a different medical group, so he came to this conclusion on his own. History had just repeated itself.

He began stepping down the meds while I was still in the hospital--discontinuing them immediately could've been dangerous. Instead, I was put on a regime that would eventually eliminate the meds entirely after I returned home. By the time the dose had been halved, the swelling in my legs apparent in the above photo had receded significantly. Suddenly, I found that my walking had improved by leaps and bound, without any actually leaping and bounding, of course. The pain and pressure my feet felt in shoes lessened, then finally disappeared completely. And finally, my blood pressure dropped. It's now back to slightly below normal. When I next saw my PCP, I asked him to remove the scarlet A from my records.

I'm now anxiety-free, or at least my records are.

On This Day

Two years ago, yesterday, according to the On This Day Facebook app, Keith shared the above photo of me on my four-hour tour of our house during my second furlough, as they called it, from the nursing home, Country Villa Sheraton. Furlough, as if I were getting out of prison. Country Villa was far from the Sheraton, but I was receiving desperately needed physical therapy. One of my most difficult exercises was to stand. That was it. I would just barely struggle to stand up, over and over again. "That's ten," Denise, the occupational therapist, would say. I would rest a bit, then she would say, "Let's do another set." It was like musical chairs without the music...or the fun. The prize was that I would be able to get up from a chair without help. It was utterly exhausting for me--that's how weak I was. Only a month before I could barely lift my head from the pillow.

I have many more readers than the last time I wrote about this, but this previous post makes a good primer about what I went through as I struggled to walk: A Journey of a Thousand Miles. As it details, another physical therapist confided to me that the other therapists thought John Silva, the main physical therapist helping me to relearn how to walk, was rushing my walking.

John Silva helping me on my first walk outside the nursing home.

But if John hadn't put me on such an aggressive program, I wouldn't have even been able to leave the nursing home when I did, and I would've lost my Kaiser Permanente health insurance. I had to be out by November or my coverage would've gone bye-bye. As woefully unprepared as I was to return home, I needed that coverage, considering that I still had a serious autoimmune disease, dermatomyositis. I could've continued with non-Kaiser Medi-Cal coverage, but my quality of healthcare would've suffered without Kaiser's superior care. And, we would've had to pay the nursing home out of our own pockets because it's likely that Medi-Cal wouldn't have paid to keep me there either. A Kaiser social worker who worked at the nursing home confided to me that in a few months time, what Kaiser was doing to me would be illegal. That was because the unfairly maligned Affordable Care Act--better known as Obamacare--would be taking effect then.

During that first furlough, I slipped and hit my head on the toilet because I wasn't used to a four-wheeled rollator. Don't worry, I wasn't hurt; I have a hard head. I'm lucky I didn't crack the toilet. John had instructed me to sign out a walker to be used during my furlough, but he was off for the weekend. A tightly wound physical therapist who disagreed with John's methods refused to allow me to sign out a walker (though this was a common practice). Without John there, I was at her mercy. So Keith went to a large local drugstore to buy one for me, but they only had four-wheeled rollators. The kind of walker I had been using had only two wheels, with rubber stopper ends on the front legs. I later learned that four wheels aren't recommended for people with little physical control. But Keith didn't know that either. If that therapist had allowed me to take a walker with me, I wouldn't have hit my head. As I said, I was okay, but that was a lawsuit waiting to happen.

After I returned home, I tricked out the walker with a tote and a cupholder.

The second home visit went smoother because Keith had ordered a two-wheeled walker from Amazon, which I continued to use until I was strong enough to handle the rollator. To the right is a photo taken on one of my first rehab walks using the walker Keith bought. And below is a photo taken on our first rehab walk at Vasquez Rocks, when I was finally strong enough for the four-wheeled rollator. The rollator opened up areas like Vasquez Rocks that would've been too difficult to manage using the walker, which created a lot of drag, even with the ski glides we put on it.

I wasn't walking fast; it's really windy at Vasquez Rocks.

This Friday, we will be carving pumpkins for Halloween. We'll also be holding a belated birthday celebration for Joella, Keith's mom. During her birthday, she was away on her annual summer pilgrimage to visit her other two sons and their families. Friday will also be the second anniversary of my return home. My homecoming was on the day before Halloween. I did not, as our custom, carve a pumpkin. A knife in my feeble hands was not advisable. I didn't want to return to the hospital so soon after leaving the nursing home. I was still recovering from MRSA pneumonia and I was experiencing painful spasms in my right foot that were eased somewhat by vibrating slippers. Thus, instead of my usual jester costume, I wore a warm sweater coat and matching vibrating slippers, since wearing only one would've looked weird. Yes, it was Halloween, but it wasn't that kind of fun-weird. I was dressed as a sickly person who had just gotten out of the nursing home after a six-week coma. I think the bandage on my tracheostomy site was a nice touch. The gloves were to hide the open sores on my hands, which had not yet healed, a legacy of my dermatomyositis. Maybe I should've used my hands as part of a zombie costume....

Handing out candy and toys to the trick-or-treaters with Joella the day after my return.

Last year, I was strong enough to carve two pumpkins and I wore the jester costume.

Last Halloween with Joella and her dog Sadie. Traditionally, I hand out the toys and Joella gives out the candy. Sadie handles the sniffing.

This year, I will have fuller hair, but more importantly, I won't need to use a cane. I only use it now when I'm out to provide stability. Everyone needs a bit of stability in their lives. I would've benefited immensely from a few extra weeks in the nursing home, but it was certainly nice to be home.

Follow me

Literally, though not in the stalker kind of way. I recently discovered that Blogspot doesn't automatically post a follow button on your blog. I have now added one. If you have been reading my blog or are interested in it, please click the +1 button on the right to follow my blog. Then, you will never again miss another "exciting" installment.

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.

Scenes from My Coma Recovery: Of Inhuman Bandage

In my coma-dream, I heard my mother muttering, “This place is a hellhole. What a shithole,” and the like, over and over again. I also dreamed of being turned over by a hulking attendant, as well as having my private parts cleaned so roughly it hurt. It got so bad that I eventually refused to be cleaned anymore. But of course, the cleaning continued because my act of rebellion had occurred in my dream world.

Keith doesn’t think the nursing home I had recently been transferred to, All Saints, was all that bad. Though my mother’s complaints may have been excessive, All Saints did have a slightly dingy, down-market air. It looked like the second-choice nursing home it was.

Admittedly, I still had some problems with over-rough cleaning at Country Villa Sheraton because my skin is really sensitive to abrasion. At least then I could tell the CNAs to be gentler. But one particular event that occurred a day or two after my awakening makes me think that All Saints was less than careful about patient comfort.

Ever since my dermatomyositis was in full progression, I had suffered from painful sores on my hands, arms, and thighs. When I awoke, they had healed everywhere but on my hands. You can see the sores in the cropped coma picture above.

I will give All Saints some credit because the sores received indifferent treatment in both the hospital and at Country Villa. All Saints at least gave them regular care. Joella has said that the sores improved, and no wonder. The treatments made it into my coma-dream as a soothing warm bath that periodically flowed over my hands.  I found it very pleasant, and I looked forward to it. But after I awoke, the treatment led to an incident that was far from enjoyable.

The procedure began as usual. The pungent smell of iodine filled the air as the nurse poured liquid paraffin over my hands, which lay in a plastic basin.  At first it felt a little too hot, but the paraffin soon cooled to a relaxingly warmth. It was a lot like a spa treatment, actually. The young nurse next bound my hands in gauze. It wasn’t until the she had left that I realized she had wrapped the bandage way too tight around my right hand.

My thumb was pulled straight against my hand, as a cop might do while handcuffing your arms behind your back. Pain shot through my thumb in waves. Soon, it was simultaneously numb and throbbing with lightening bolts of pain. Before long, my other fingers joined the chorus, cupped and tightly bound to their sisters as they screamed in agony.

My loved ones had been continuing their rotating visit shifts after the awakening. Joella was there with me as my bondage drama unfolded. I couldn’t speak due to my tracheostomy, so I exaggeratingly mouthed, “Too tight! Too tight! Hurts! Hurts!” After a few tries, she understood what I was trying to say. She tried to loosen the bandage, but it was too firmly tied.

I tried to work my left index finger in there, but I could barely move my hands even when unbound. The mummy-like binding wouldn’t budge.

“Help me!” I begged, crying from pain and desperation.

She tried again. And again.

“Nurse!” I mouthed, mimicking scissors with my left hand, for good measure.

Joella went to find a nurse. When she returned, she said, “Sorry, they said they would have to re-treat the hand. You’ll have to wait until the next treatment.”

That would’ve been several hours away. I didn’t care if my hand would be without treatment—I was in excruciating pain! And, I was worried about nerve damage. It was that bad. I wormed the cold edge of a knobby IV stand connector under the bandage to create some leeway, pulling away as best I could. It wasn’t long before I had to drop my enfeebled hands again. Then, I slipped the metal under the gauze again and continued working it. The cycle repeated. Eventually, I managed to create a very slight easing in pressure. But the pain continued to grow.

Every few minutes, I would beg for Joella to do something. “Please!” I would mouth, my hands pressed together in prayer. By then, she was crying too. She went back to the nurse again, but was once more rebuffed.

I made the scissors mime again, then put my hands together. “Sorry, I can’t,” Joella said, as tears ran down her cheeks.

Joella wasn’t being hard-hearted. She was acting like the respiratory therapist she was trained to be, deferring to medical authority. By the end of her visit, we were both emotionally spent. It was clear that she was as distressed as I was. But I was also utterly exhausted from my efforts to work off or at least ease the tension of the bandage. My arms were as weak as a baby’s from the six weeks of enforced immobility.

I fixated on my mother’s arrival, as I counted the minutes. My mom does not take no for an answer, nor is she deferential to authority.  I knew she would insist that I be freed from my bondage. As soon as she showed up to relieve Joella, I mouthed, “Too tight! Too tight!”and showed her my torturously bound hand. She pulled a pair of cuticle scissors from her purse and performed the surgery herself with a few snips.

My hand remained numb for few days, but after that, the nurses applying the bandages would ask me if it was too tight before leaving. But when a bed opened up at Country Villa, I insisted on taking it.

My mom asked me if I wanted to go back to All Saints, but I shook my head so vigorously that I felt a little dizzy. I was back in the hospital at the time. But that’s another story.

Forever malwary

Yesterday, someone hacked my computer. Every time I tried to log into Blogger, I was instead prompted to sign into one of my Gmail accounts. It even happened when I clicked on the "B" from another person's blog. It doesn't appear that they got any sensitive information or caused any damage, but it did hijack my day and left me feeling violated.

But that's not what this blog is about.

It occurred to me that my illnesses have been a lot like that. Out of nowhere, I developed dermatomyositis. As the prednisone was arresting the DM muscle damage, the immunosuppression I developed from the prednisone caused me come to down with listeriosis and Legionnaires' disease. The Legionnaires' disease triggered a severe case of sepsis, which dropped my blood pressure drop so low that I experienced a series of strokes on both sides of my brain, and I fell into a six-week coma.

Okay, so that's a lot more convoluted, not to mention more serious, than what happened yesterday. After all, I'm still recovering from the strokes and coma; all I'm doing about the hacking incident today is running an extra anti-virus scan.

What they have in common is that something completely out of my control took over my life. Furthermore, cancer is a bit like malware. A malicious bit of code, genetic in this case, takes over your cells. As far as I know, I don't have cancer, but the increased risk of malignancy that comes with DM means I have to be ever-vigilant. Though the malware scan we ran yesterday seemed to have fixed my computer's infection, there's no guarantee that any cancer I might develop would be so amenable to cure.

The bottom line is that any time, something can come along and take control of your life. Of course, that hacker's aim wasn't to prevent me from writing this blog. The DM, Legionnaires' disease, strokes, and coma, weren't part of a plot to make my life miserable or kill me. When you're an atheist, you accept that bad things happen, and it has nothing to do with you. You just deal with it, run the scan or do the exercises, anything thing you can do move on with your life.

The plugged in know if they want to stay online, they have to accept the risk of hackers. All humans recognize that in life, they face constant dangers. Atheists believe that nothing can protect them from those hazards. Those that are all of the above do their best to be prepared.

Every step I take, every move I make...

This Sunday, at the Japanese Garden.

Hanging on for dear life on a previous visit.

From the beginning of my recovery, milestones have been achieved before I realized it. I'll be performing some task that I always took for granted, and it's some time before I suddenly realize that I'm doing something I couldn't do before. Yesterday was one of those days.

This phenomenon is one of the main reasons that my recovery has forced me to become more willing to take on physically difficult endeavors. That and nearly dying makes merely feeling dead seem less dreadful somehow.

It's also the reason why I waved off the well-meaning suggestion of one of the volunteers at the Japanese Garden that I take the stairless route out the back of the tea house. And that's why I climbed every step in the garden. Yeah, I know it's harder--that's the point. "It's good for me," I assured her.

Indeed it was. I noticed there was something different in the way I marched up the open steps without rails within the garden, a certain ease. And I was doing it much faster, too. I thought, wow, I really have gotten stronger.But it wasn't until I ascended the steep flights to the observation area that I realized that I was mostly powering up the steps without pulling myself up using the rail. I used to cling to rails as if they were life preservers, which I guess they were. Then came the real shock: I was taking the steps in sequence. Instead of step, stop, step, stop, I was actually climbing the stairs, one step after another! I haven't done that since before I developed dermatomyositis, which damaged the very muscles I need to perform this instinctive movement. And that was before the strokes and coma.

This is the reward that awaited me.

Plus the knowledge that I was one step closer to complete recovery.

For more feats of stairing-do, at the Japanese Garden and elsewhere, check out my recovery walk Tumblr.

It happens

Last Sunday, on my rehab walk. I used to need Keith to help me down steps without rails. On most steps, I don't need to go sideways anymore, but these were kind of steep.

I've talked about my resilience and the equanimity in which I've faced the countless tribulations related to my illnesses and recovery. These qualities seem to surprise many people, most of them believers. I've also discussed the varied lessons nonbelievers and the religious might take from my recovery. But what about the different ways the two groups react to similar trials in their lives? What role did that play in my attitude?

I can't presume to speak for believers, but from the outside, they seem to react first with prayer. I know the idea that God will save them from whatever terrible battle they face, or at least give them the strength to cope with it, is immensely comforting to them. But they're more likely to wonder if God is punishing them for something, as well. The things believers say to each other in times of trial tend to reinforce this way of thinking. God is trying to teach you something. God doesn't give you any burdens you can't handle. Or, the ever popular, it's all in God's plan. And even if they don't worry that it's a punishment, God is still doing this to them. Everything happens for a reason, as people so often say. I would take that kind of personally, myself.

One thing I've always wondered about prayer is, why is it even necessary? Surely the all-knowing God is aware that you don't want this cancer, autoimmune disease, or whatever. Will he only heal you if you beg? And if it's just that he needs to ensure that you're sufficiently devout, then isn't the affliction a form of blackmail?

Atheists and skeptics, on the other hand, are more likely to research their conditions to better understand what's going on, acting to improve their odds in some way. For example, the first thing I did when it looked like I almost certainly had dermatomyositis was schedule cancer screenings due the increased cancer risk associated with DM. I received my first abdominal ultrasound on the same day I got the official diagnosis from my rheumatologist. I've been getting the tests on a regular basis because I'm still in the 2-3 year period of elevated risk. It's quite unpleasant, but not compared to ovarian cancer detected too late. I won't even go into the colonoscopy (hint: the preparation was the worst part).

Nonbelievers also don't waste much time wondering why this is happening to them. Why? Because the universe doesn't care a whit about your existence. You're not even a pimple on the ass of the universe. And, at any rate, the universe can't do anything but expand endlessly, or eventually contract into the Big Crunch. Sounds like a candy bar, doesn't it?

This philosophy can be strangely comforting, actually. You haven't done anything to deserve this; it has nothing to do with you. As a great philosopher once said, "Shit happens." Unshitty things happens too. The nice thing about randomness is that any time things can turn around again. To the extent you can control things, your fate is in your own hands. And the only lessons you'll receive are the ones you choose to take from your experience. I've learned a great deal from my strokes and coma, but it all comes from nearly dying and my struggle to recover. In truth, I'm teaching the lesson to myself. My experiences were simply the coursework.

But at least the religious believe that if they die they're going to heaven, crossing that rainbow bridge to meet their lost pets and their dead loved ones in their exclusive heavenly Club Med. Yup, you've got me there. I think I'm going into the ground and the only thing I'll see are the worms eating my flesh. Only I won't be seeing them because I will be dead as a coffin nail.

And that's my point. I have no choice but to soldier on, accept what's happened, and do the best to conquer my obstacles. No one was going to make me walk again, just as nothing can save me from my ultimate doom. That's why I want to do whatever I can to make that eventuality as far off as possible. Shit happens, so watch your step.

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....