Too much

 Friedreich's ataxia is really awful, but I have never really considered not being able to suck up what FA throws at me. . . Until this week.

The temperature regulation issue continues. I actually emailed my neurologist to confirm that this is an FA problem. He said probably. 

What I have noticed lately is that I will be uncomfortably hot while I am awake, so I will find it better not to cover myself in a sheet even. Then hopefully I fall asleep. I wake up cold. My feet, of course, are cold always.

But back to Wednesday night. As I always do, I stayed awake until I was really tired. But between my being too hot and the sleep mask I was unable to fall asleep. I did eventually, waking up several times, so it was not a particularly restful night.

I wondered  Thursday whether I can continue to survive what is being thrown at me. I remain uncertain what the alternative is.

A mess but still here

 Years ago, but not enough years ago that I did not know better, I got ridiculously mad that my Moishe action figure from Where the Wild Things Are would not stay in its stand. It was just the straw that broke the camel’s back.

These days I am worrying about the next straw, the next Moishe as it were.

A lot of things just seem to be piling up on me.

Physical things, of course. Things like my sleep or my temperature regulation or my feet hurting or my shoulder bothering me or a recent fall where I slipped out of my chair while using a urinal and wound up on the floor with one hand in Fame’s water bowl and one thigh stretched way more than is comfortable or my hands being unable to press the proper button on my lift. 

Mental, too,  all my worries about everything happening to me.  I am so tired of living with Friedreich's ataxia — not that I have an option — and I don't see how it can get better, only worse.

All the rain doesn't help either.

There is more, of course, but that is enough for now. 

Frankly, I am a mess. I think that is why I have not written in a while. Sometimes writing about what is bothering me helps me feel better about it. Not now. I don't think there is any way things get get better and it's just depressing.

Moishe is still standing in my room. The stand doesn't work well, but he leans against the wall and Bernard, another Wild Thing who stands well. 

Perhaps that is what I need to take away from this story:  That Moishe is still standing with the help of the wall and his loved ones.

How dare I?

 Mom was having phone problems, so she did not call to make appointments for my foot X-rays and circulatory study the other day when she first came over. She planned to do it from home, she said.

She came back a little later with news.The X-rays won't be a problem. In fact , I wouldn't even need an appointment. I just show up.

She called about the circulatory study and was getting ready to make an appointment when she asked what it would involve. At this point, I was sure they were going to say it involved sticking needles in my feet. I've already had that for a neurological test, an EEG, which the Mayo Clinic calls painless. Maybe it has changed, but it was one  of the worst tests I ever had to endure. 

But no, the problem was not needles. 

When they learned that I don't stand or transfer, they said they couldn't do it. They are a hospital testing site, but apparently they qualify as an outpatient site that does not need to fulfill ADA kind of things. 

Disabled people can be so inconvenient sometimes. Needing a medical test. What was I thinking?