Back in September my physical therapist, Nancy suggested I get braces made.
My feet were totally floppy and I couldn’t wiggle my toes. They called it foot drop.
My hands were floppy as well and my fingers wouldn’t straighten anymore and I couldn’t lift my wrists. I tried boxing wrap, Velcro braces, stacks of stretchy bracelets and hard formed braces made by the OT.
The problem was if it involved the thumb I couldn’t transfer, push my chair or wash my hands. Once I had to take them off, I couldn’t put them back on. Everything was difficult.
We went to a place that makes braces on site for feet, turns out there is not much for hands. They fit you in a plaster cast and when it hardens they have a perfect mold of your feet and shins. I was also sent home with boots to sleep in and hand braces I would sleep in as well.
Problem was I couldn’t pull up the covers, get out of bed, or fluff a pillow.
God I was hating all this!
Your feet go into an L shaped plastic cast that Velcro’s across your ankle and
under your knee. You have to wear a knee sock with no seams because when you can’t feel, you have no idea if something is rubbing or causing a blister. Also, your feet have to go in a shoe that is two or two and a half size bigger. Instead of looking down and seeing my size six foot, it was now in an eight and a half, very weird.
Weirder still is trying to walk on feet you can’t feel, in plastic.
Frankenstein was more graceful.
At therapy the goal was to walk.
I worked with a very tough woman and whining was never an option.
You start out with a gait belt that she can grab onto during your inevitable fall.
It’s steps, then a few more, then she let’s go for a few, it’s all very exhausting and terrifying.
The fear is so consuming I had panic attacks, seriously.
Imagine your hands bent down at the wrist, fingers in a fist, wrapped in plastic then put into a mitten. Now, try to walk on the surface of a squishy ball that you can’t feel with your feet or legs.
That’s pretty much the state I was in when we arrived for our first day at The Mayo Clinic.
When you go to a place like this, nothing can prepare you.
It’s enormous, taking up a huge portion of downtown Rochester. The high rise buildings look more like a Fortune 500 company than a hospital. The lobby of one of the main buildings has a section for wheelchairs that reminds us of a used car lot.
The days were booked.
I gave blood,and had an autonomic reflex test.
I gave more blood, had a bone survey, carried pee around for 24 hours, (yes gross) and had an MRI, Pet scan, CT scan and a Spinal Tap.
They did a fat aspirate on my belly fat, and no they wouldn’t make me a size six, whatever.
I had a swallow evaluation and an esophagus X-ray because one of my vocal cords had become paralyzed making it very hard to talk and impossible to sing or yell, which of course Michael loved. Daily you could hear me less. Daily I had to yell louder with quieter results. They hadn’t seen this.
The ENT requested back up. He suggested a doctor who lived in Atlanta.
He looked at me with a furrowed brow. He called in his nurse to do “a quick lip biopsy” he said her name which I do not recall because before I could process anything she has my tongue in her hand wrapped in gauze, and he is coming at me with a needle that is so long it looks like a joke. It isn’t.
He has a headlamp on a headband and it shines in my eyes. He leans in.
I squint. I can’t squirm.
Her grip is like a vice on my tongue. I forget to breathe.
He cuts me then puts in three stitches. He hands me ice chips. I ask for Michael as best I can. We had thought this would be an easy appointment so he was waiting in the lobby.
I sobbed when I saw him and held the ice to my lip until I drooled and it went numb.
I had another “shock the monkey” ( yes this makes four) and it was by far the worst. This one they went into my neck and clavicle. I begged them to stop. I begged them for Michael to be there. I begged for a drink of water. I suffered.
Next up was a sweat test and it was by far the strangest.
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