Sudden prolonged weakness. Too weak to move, hard to breath. Linda and a care worker use the sheet to roll me in bed. I lose almost two hours. Linda tells me I had problems breathing, stopped breathing. She breathes for me, holds me.
I was going to go wheeling that day. I twitch my head to get the worker closer. "Tomorrow" I promise her, "I'll wheel tomorrow."
It might take 2-3 hours to dress and be ready but I will wheel. I am going to be in a 5K within a month, then a 10K, the women’s cancer 5K and Terry Fox 10K.
This week I found a new foundation: the seven people doctors in who study autonomic failure diseases have created this foundation together. They are just now starting on a drug trial, a drug and control group (group that gets no meds) for finding a drug that helps. I think about the Hospital which specialized in Parkinson’s and MSA-p, and how the director told me I needed an autonomic specialist
“Where? Is there one here?” I asked and she promised to look. But she never found one.
Three years later and there is the start of one. The doctors are looking to base themselves in one or two locations. I want to live long enough to know that there will be something other than pain relief and gatorade for the next person who gets this.
“It is a cruel, cruel disease.” Linda said to me today. It is, cruel on both of us. It will be studied at last, medicine at last, not while I live, but soon maybe.
They found three patches of Fentanynl on me, left from previous days. Oops! The patches burn into my skin, so I have to use aloe afterward. You can see the burn on my neck in the previous post. Linda added the adhesive cover patches to the wish list.
We use covers on the Fentanyl patchs because I don’t lie in bed like others, like they expect me to. I move, and wheel, and exercise. One day I’m going clubbing.
“I want to video my workout next time.” I say, “I don’t think they would believe it. I’ve haven’t had a care worker yet who can keep up with my exercise. Not even the first 20 minutes.”
“I don’t think the readers know what you do to survive.” Linda says. “I couldn’t do it.”
I use my hand to rub between my nose. “If you want it bad enough…”
I am rarely at the computer now, either far too ill, or if not, I am up and 'doing.' When I am here, I get my fix of good films and plan my next moves. Also I watch this, so that I remember to keep fighting, and dancing.
Here is my remedy! So while I go dance with the Enemy, you keep on moving, ‘kay? And turn up the volume! ("...everybody seems to have given up hope of trying. I haven't. It isn't easy and it isn't supposed to be” – Terry Fox at 3,113 km)
1 day ago