Don't forget 'highly collectible'

 I have been having sleep mask issues. 

Not so much the last four nights when I have 22 hours. Well, I should. It isn’t my fault a strap came undone in my sleep and I couldn’t reattach it.

One of the issues is my supplier, who used to send small and medium mask frames, now sends just small. The supplier labels it “small-medium” on the invoice, but it is a small. I use a medium.

We called the supplier to request a medium, and Mom was taking to asleep therapist there about my issues.

He asked if he had been out to see me before.

Mom said she didn’t think so.

But he was sure he had.

Finally, he asked,”Does he have a lot of figurines?”

I’m famous!

Lucky

 I got in bed to exercise today, but I  forgot something. My sister was at the store, and it just me and my nephew.

He was up online gaming in the attic.

I called him, and he came right down.

I heard him talking to his friends when I called him.

He said it was fine when I apologized for making him come down, but how does one explain to your teenage friends that you have to go downstairs to get your uncle a urinal?

I hate being me sometimes. Luckily, my family doesn’t.

At least I have a few

After dealing with me for 22 years, my personal care physician probably has a pretty good idea of what I can and can’t do. My neurologist, an expert in Friedreich’s ataxia, likely does, too. 

Other than that, I don’t think most of my doctors understand what I am dealing with and why it might be extra hard to turn on a sleep machine or take medicines that are known to cause constipation or why surgery might not be the best option for me or why hearing aids might not work well for me.

It’s not that I don’t speak up. I think they don’t hear, at least not very well.

Some do. My optician said he didn’t know if I could have laser surgery with my nystagmus. But, he continued, it wouldn’t help you not wear glasses, which I told him was my goal. You’d still need reading glasses, he added.

But the ones who don’t hear well are little different from society at large.

We can deal with someone with one disability, but adding another in, even if they are related, is dicey. 

Book of bitter

 My niece is reading this book she is reading for school that is a year’s worth of essays about things the author found delightful.

I may read it even if it does sound a bit saccharine to me.

I don’t guess I’d find a big audience for 365 essays about things that make me bitter.

Lately, I suppose, I am more sad or resigned than bitter.

I have a relatively good neurology appointment, but at the end of the day, I still have a deadly disease that is worsening.

I’d rather read the book of bitter than the book of sad.