Friday, April 1, 2016

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.

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Coma Girl

Coma Girl

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In July of 2013, I fell into a six-week coma and nearly died. When I awoke from the coma, I could barely lift my head. It has been a hard road to recovery. The doctors advised my loved ones to give up all hope for my full recovery, but while they were shining lights in my eyes to gauge my level of consciousness, I was telling them grumpily to leave me alone because I was trying to get back to sleep...in my coma-dream. I was experiencing covert cognition, and the coma-dream was my version of a near-death experience. I'm a skeptic, so I saw surreal images instead of spirits or dead loved ones. According to my research, as many as one in five people with consciousness disorders have covert cognition.

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.