I hate cold, volume 891

 Here is another reason I hate the cold and the need to wear more clothes: The extra clothes catch on things. 

I was near my desk yesterday afternoon and I coughed. Before I knew what was happening, I had leaned over my knees and my sweatshirt hooked the joystick and it started sending me toward the desk. 

I had been standing the night before, so my desk riser was still about six inches up in the air. The result was that my head slid between the riser and the disk itself before I was able to stop the wheelchair 

I thought about trying to get help from my nephew, who is home for Thanksgiving, but I could not reach my watch or phone. 

Eventually I freed myself and was fine. But Gosh I hate cold weather

Side Effect 1

 I had the first side effect from the medicine to treat Friedreich's ataxia. Actually, it is more correct to say I was just made aware of it.

 I went and this week to see my doctor for blood work after two months of the drug. I like my doctor a lot even though he is totally different from the doctor I had for the best 25 years old. 

And that’s not just because he asked me if I wanted to do Coloaguard or “poop in a box. It is just different. 

One way is he got the blood work back to me the very next day. 

It showed that my cholesterol has gone through the roof, a potential problem with this drug. 

The rest of my blood work was okay, though, so that's good, and we will retest the cholesterol in six months to see if I need to go on medicine I lower it. 

It is sort of like what I was talking about with sweatpants and the lift and how I cannot have two simple things. I can't be warm and use the lift easily. 

With this, I can't treat Friedeioch’s ataxia and have half decent cholesterol, apparently. 

It annoys me that one medicine is making me take another. I don't like taking medicine.

Either-or

 I have begun wearing sweatpants on occasion. They keep me warmer than shorts and leggings. Mainly because wind does not blow up shorts when I’m wearing sweats. 

And I  have been able to manage my incontenency. Yea me.

But, as often happens with me, I can be warm or I can use the lift. I can't do both, at least not easily. 

It turns out that sweats tend to get caught in the leg brackets of the lift and keep me from getting in the lift.

I do not have the "be warm or use the lift" issue often, but it is common for a  plan to seemingly work, only to have complications.

Whoops

 It finally happened. 

I woke up on Wednesday night and I could not move my head. 

I thought the sleep mask or its tubing I had gotten caught somehow. But they seemed free. 

As I slowly woke up, I realized that the lift, which I keep on its charging station right above my hea, hand lowered on to me. 

I can't say that it lowered of its own volition, though. 

I have been wearing the lift removed around my neck ever since my legs have gotten really jumpy. That’s because if I need to use the lift to relax my legs when the sleep mask is on, I have to hold the remote and hope I we don't lose track of it. 

I rarely use the lift to travel horizontally when my legs are jumping. I usually just to use it to sit up. 

I managed to get to lift back up, but it was not easy. 

Maybe I should keep it away from my head at night. Life would be much simpler if I didn't have to deal with restless legs. Actually everything related to Frederick's ataxia. 

Not better

One of Mom's friends started using uh sleep machine, and Mom said she would not tell her that it took me three years to get used to my sleep machine. 

This is a good thing. 

For one thing, it took me four or five years to get used to it. And yes , I know I am probably jinxing myself by saying I got used to it. 

The bigger problem is it since the summer I have been wearing my sleep mask usually for seven or eight hours a night. But despite that, I would give it all up and throw the machine out the window if I thought I could. 

What I mean is I see absolutely no benefits from the machine. Maybe they are there I just don't know them. Maybe I'd be a million times more tired without without my use of the machine. 

But the doctors told me I would feel so much better once I started using it all night every night, and that has not happened. 

Hear me roar

I wrote this last and the previous blog with a new speech recognition app. 

It is  not perfect but neither is my speech. 

It is actually designed for people with bad voices, which I have. 

My older sister send me a link to it years ago, but I never followed up. It required me to set up an account,  which is hard to do on my phone, and I never remembered to do it when I was at of my computer. Then my younger sister mentioned it and sweetly, sweetly suggested it might be the answer for me if I wanted to blog. So I figured I better try it. 

As I said it doesn't always understand me, but it is  better than either siri or the voice recognition computer program I used 15 years ago. Much has changed in 15 years, so I imagine it is better but I know my voice is a lot worse. I  figure it's a wash. 

It is not something you by outright instead it is an annual subscription. And a pricey one at that. But it seems to be worth it.

Riding the rails

One night last week when my restless legs were quite restless, I got completely in the lift and got myself onto the floor in front of my bed. There I watched TV. It divd not help, though. 

My legs were still jumping, well one was anyway. 

I raised the lift to see if that would help. It didn't. 

What it did do was caused some discomfort because ever since I came home from the hospital this summer I have stoped wearing boxers to bed. It helps get things where they need to go. It hasn't eliminated the need to call my sister for help at night but it has limited it somewhat. 

Anyway, I needed to lower the lift back to the floor quickly, but the problem was it was a little over the footboard so it didn't want to go down. 

It finally did, but then the problem was it would not go back up, at least not more than a foot. 

I refused to call my sister so I was resigned to finding a solution myself or sleeping on the floor. After 15 minutes it it did go up and I figured I better go back to bed. 

Even if my foot was  still jumping.