Of mice and men and Friedrich's ataxia

Back when I was a bit more optimistic about Friedrich's ataxia and read  about it religiously,  I read a lot about the mouse model.

These were not about Anatole posing for a painting but about something scientists had learned from a mouse they gave FA. The study of FA, it  turns out, seems to owe a lot to mice.

But even mice have their limits.

Mice are not humans, or humans are not mice. I heard both a number of times yesterday at the Children's Hospital of Philadelphia, as in, this drug does wonders for mice with FA, but humans aren't mice.

Nevertheless, if the drugs go to trial, I'll be there, letting them dose me up. I do wish I was Anatole, though.

Manic Sunday

This Sunday was not my fun day.

I was getting ready to transfer to the toilet when one of my braces fell off again. It was my once-trusty right brace.

My nephew wasn't around, so I transferred myself. Actually, I just had to go.

The transfer went fine, although the urgency I felt was an illusion, and I hate going through the transfer hassle for no reason. The only thing I achieved was somehow leaking, so I needed to change.

I spent  most of the day on the back porch reading comic books. I would come in from time to time to use a urinal whether I had to go or not because regulation helps a bit unless ...

You knock your  urinal on the floor, upon which you have to go really bad.

So I stood up to try to get to the toilet or at least keep my wheelchair cushion dry.

The cushion stayed dry, but I peed all over the floor.

I then called my sister, and because talking and standing is apparently too hard, I feel into the pee.

Later, upon getting out of bed, my legs buckled and I was holding on but couldn't reach anything.

Stupidly, I let go and crashed into the floor. My Uggs luckily  caught my head.

Finally, I forgot my chest strap when drinking tea at my computer.The result: a cough an d tea everywhere.

It was awesome.

Blame the braces

My nephew has helped me in and out of the shower, when I had a bloody head and when I was on the floor.

Today he helped me to the toilet.

Man, his therapist is going to have so much to work with.

My braces were coming off all morning, and one came off as I was getting on the toilet.

No one else was around. I needed to go. So it was an easy choice.

But I still feel bad for scarring my nephew.

My (mostly) beautiful butt

Not to brag, but on Tuesday,

• I had multiple women looking at my butt.
• One even took photos.
• Another told me what good shape it was in.

Granted

• They were all medical professionals.
• The photos documented my issues.
• The person was talking about my skin being in good shape.

Without my fantasy, it would not be easy to write cheerfully about a visit to a wound clinic.

They didn't find much, but they did find a few things I need to take care of.

It isn't my wheelchair cushion, which I was worried about. The wheelchair rep came Wednesday and did a pressure mapping, which showed the cushion is doing the right stuff.

But something is up.

Stressed

A friend of mine asked me after I wrote off one of my ER visits to stress: Are you stressed?

On the one hand, I was and am pretty proud that it is not obvious.

On the other, I wanted to cry, Hell yes.

No part of my life is stress-free, and much is stressful.

The latest: Tomorrow I go to a wound clinic because I found another sore on my butt.

Sores on one's butt are kind of the kiss of death for wheelchair users since we are always sitting.

I am just tired.

Full bathroom

I sat back on the toilet other loudly several times at work Monday. Not vocally, but noisily.

I half expected the person in the stall next to me to ask if I needed help, but he didn't. Then he left, and I tried again.

This time I didn't sit back heavily. I tipped forward. I was on my tiptoes, squatting, and holding on with both hands.

I tried several times to get back to the toilet and was so close, but I couldn't do it.

I knew I'd need to let myself down to the floor to be able to use my watch to get help, so I did.

At this point, I was half in the stall, my naked legs, and half out, my chest and head. The problem was  I couldn't reach my watch to activate Siri.

As I tried to roll over to be on my back, I realized I was stuck. My hips were wedged under the stall barrier.

Panic was rising, but I relaxed and rolled.

At this point, a deaf co-worker came in. Through hand signals, we determined I was OK and he should get help. I also called a friend for help.

Shortly after, my friend came in with someone he grabbed to help. The deaf guy came back with another guy,  and two other guys showed up, maybe just to use the bathroom.

First, they got my chair out of the stall, then my friend pulled up my pants, then three others gently slid me out and put me in my chair, then one of them put my shoes on because they had fallen off.

Assured I was OK, they left, and I went and did some work.

Sad

As I am sure you must realize by my lack posting, things are crappy (except for yesterday, when I was walking with a friend).

I am sleeping poorly, not a sleep apnea thing, I just can't fall asleep.

The apnea machine is being approved by insurance because clearly a company knows better than my doctor if I need one.

The sore on my butt is no worse but not better.

The incontinence medicine I am taking is crazy expensive and doesn't work as well as I hoped.

I fell in the bathroom at work, which is a funny story. But I Don't feel funny.

I am just sad.

Not liking these odds

Ever since we buried my uncle last week, I have been thinking who in my family will die next.

I limited it to people I was related to by blood.

I think I might win, by which I mean I might lose.

Then, this weekend I developed a tiny sore from sitting.

I don't see this as proof of my demise. I do see it as more proof of a failing body.

Please be scared

A friend had a nice idea when I told her the sleep mask and marine had to first go through insurance. "Maybe they'll be scared of you."

Not me, of course, but my sister.

I hope so. In the past seven days, I have set well once, and well for me still means crappy.