Masks and my sister

 At the risk of sounding like I am dissing mondo-cool people such as Bill Nye. I really hate masks.

That was my key take-away from my visit to the Children’Hospital of Pennsylvania today. Well, also that my sister rocked.

Neither are a surprise, but rarely mention the latter, especially because she won’t let me live it down. But she does (now shut).

Anyway, I know masks help prevent the spread of Covid. I would not have sat in a room with four non-family members without masks. But they keep me from hearing. Even with my microphone.

Luckily, my sister was there to translate or just hear.

I am still not entirely sure why my neurologist emailed me about setting up an appointment. I am glad I went, though. Even hearing little, I learned some things.

The first FA treatment passed a significant hurdle and will be on drugstore shelves in about a year, a doctor who doesn’t predict predicted. The drug essentially takes you back two years FA-wie and keeps you there.

He also encouraged me to take part in another trial.

And finally, he said I appeared to be doing well.

Hooray.

Stop thinking

I am thinking too much.

This I nothing new or surprising. I always think too much.

It is just for the past year, everyone had legitimate worries. But now as things get better, I worry about silly things.

For instance, today it occurred to me that Mom became a grandparent at 50. It is highly unlikely that I will when I turn 50.

I know times have changed, and none of my 50+ siblings are near grandparent status, at least that I know of. (Siblings over 50. My family isn't that big.)

I suspect I need to start seeing my counselor again.

Sleep frustrations

 I am on my third sleep machine, second type. I hope that soon, I’ll be on the second version of the second type. I just learned it was recalled in April.

I did not learn this from my supplier, which called me a few weeks ago concerned I hadn’t been using my machine regularly. (It was because of the eye incident.) Mostly, Mom said, they were concerned my insurer might stop paying them.

I didn’t learn from that insurer, the doctor who put me on the machine or its maker either.

A message on the supplier phone told us about it as we called to complain when their shipment finally arrived  missing stuff.

This was just the latest frustration in the sleep machine trials. Actually, no, the latest was this morning. 

After many nights in a row with bad leaks, last night was perfect. I did nothing different, well except the stupid tube got caught behind the bed, almost causing an accident by not letting my head move.

I am just so tired of this.

What do I want?

I am thinking of getting myself a present. Of course I think I always deserve a present, but this time I really do. 

On Wednesday night marked the seventh straight night I wore the sleep mask for at least four hours. My previous record was five nights. 

Four hours is the minimum I have been told to wear it. And I wore it despite fits that ranged from so-so to god-awful (wore it seven hours, six were a large leak). 

I fell back a little to three hours last night. Still, yes, I deserve it. What do I want?

Staying up late

In previous days, my jumpiest legs was my left one. But lately my right one has been acting up.

I blame the sleep mask.

I am using a cushion, the part that goes over the mouth, that leaks. I’m stuck with it because my supplier (I sound like a druggie) is late sending a new one. 

So I put the mask on at night. It leaks, blowing air in my eyes and waking me up, and my right leg starts to jump.

Needless to say, I have been up late the last week.

Not happy but ...

 As the pandemic wanes, I am forced to confront the fact that more than Covid has been making me sad.

This is no surprise and nothing new nor even insurmountable.

Actually, sad isn’t the right word as much as not happy.

Sometimes, I’d say I’m even content, which for me is probably worse than being sad. If I were sad, I might be moved to change. (This is very debatable.) But I am content sitting in the yard, walking with Fame and often Mom, watching TV, reading, teleworking, playing on my Mac, etc. 

I am doing little things, and it is  early to be back to normal. Plus, complications of Friedreich’s ataxia haunt just about everything I do. Yes, I am lonely, but I have FA so no duh, I say/   

Maybe I should be happy I’m not happy. It’s a sure sign things are returning to normal.

She speaks for me

 Fame is my voice, crying out in the bathroom when I ask her for help, although last week she apparently didn’t like the way a transfer was shaping up and Tok it on herself to bark.

Today, on our first trip in public in more than a year, she also spoke for me. Sadly, the intended recipient didn’t hear.

We went to my niece’s graduation, and when my niece’s name was  announced, I had her speak.

I can’t really clap or cheer, so I was pretty tickled, even if we were too far away to be heard.