Suck that, depression

This morning I got on the toilet as I normally do, and instead of transferring off when I finished, debated just sitting on it all day.

I'm not sick or anything. I think this thought, which is not new, is related to three issues.

• First and probably only counting for 5%, I have evacuation issues, which if I stay on the toilet are eliminated.
• Second and maybe 15%, transferring back to my chair is a challenge. Most of my falls come during this transfer.
• But the lion's share is related to depression. Not awful but niggling. Lots of stuff: my disease, the world, the cold, evil, my shoulder ... Cold is a biggie these days.

Instead, I got dressed and took Fame for  a walk in the miserable cold. 

Gray?

My hearing aids were under warranty through sometime in December.

It should not surprise me, then, that they stopped pairing with my phone this month (it does surprise me, but is shouldn't).

Even bigger shocks were in store.

First, the company said the hearing aids would cost me zero out of pocket. Then when I made the appointment, the zero became substantially more. But I need hearing aids.

Then today I went to pick out new hearing aids, and we got to the color. I picked out tan and showed the audiologist.

No, he said, you want something that matches your hair, and he showed me gray or silver.

I'm OK

When I cough and the force causes me to bend over at the waist, no one bothers at home.

I'm not criticizing. I am just saying. Everyone, Fame included, knows I wear my seatbelt and such a cough is no big deal.

Not so at the clinic.

I coughed like that when most of the patients and aides were in the open room watching TV.

The mom who was drowsing in a recliner next to me jerked the recliner down and was halfway out of it to help me. The other mom was getting out of her chair, so was another aide. And a nurse saw and was on her way.

The people with FA were like WHATEVER.

Another big question

The next step of the study -- if I want to take part -- is a 17-day trial in a few months that features multiple, ascending doses of the drug.

I knew I could survive a week; 17 would be harder.

I don't like missing that much work -- it isn't that I don't have the leave. I just don't like not working for that long.

I don't like being away from Fame that long.

To say nothing of missing my routine.

But how can I not take part? How can I not try as hard as possible to take control of my uncontrollable body?

Studied

The study runs through early March, but I suspect I won't be getting superpowers.

It is probably for the best.

I would be sad if I did Hulk out and started smashing stuff, hurting people the clinic -- they were all really kind.

Or I'd be kidnapped by shady government execs who wear black suits and smoke.

I came home for the long weekend, and heard back tomorrow for a checkup Wednesday. That is the last thing in New Jersey. A local nurse does a check in March, then I am done.

Despite the no powers thing, and Bruce Springsteen not visiting, I reckon it was a good. It was interesting to be with strangers with Friedreich's ataxia and be one of the older and worse off ones. It was a mostly painless. I hope I helped the research.

Of course, I still have FA.

it's gotta be the gloves

When I was hospitalized a few years  ago, one nurse  brought me my toothbrush, toothpaste  and  a dish to spit in without glove. I loved that.

I told a friend who was horrified, pointing out that gloves are for my benefit.

He was right, of course, but having someone touch me and my stuff without a thin layer of latex meant the world to me then and I suspect still.

I think that is why I am mostly unafraid of a medical company putting a mostly untested drug in my system as they are doing Thursday. But the prospect of an attendant I am not related to helping me fills me with dread.

But that's why I bought gloves.

Stuck

My sister has asked me to just call her if I need to stand up to stop m legs from jumping. She reasons, reasonably, that it's easier to help me stand than to use the lift to pick me up.

I listened for a while, but lately, since my legs have gotten quite bad, I hav been standing up without her.

In my defense, I am usually OK ... until I slid off the bed on Saturday night.

She picked me up and didn't yell at me though she might have been too tired. She did leave my chair, which I use to stand, away from my bed.