Crumbling

I have sleep apnea and have to go back for another overnight study.

This diagnosis is not really a surprise. I snore violently. I am always tired. And my body has proved remarkably good at failing in the most basic things, walking, hearing, peeing -- why should breathing be different?

I am not ignorant that if they treat this successfully and if it makes me less tired, I would regain two hours of my life that I now each day.

But, when you are dealing with my body, those are big ifs. Mostly, I find this insanely defeating. Yet another part of my body crumbles.

Matty and the CHOPper Bunch

I forgot one thing about my visit to Children's Hospital of Philadelphia, which is known as CHOP: I am part of their tracking study. 

Not really a big deal. They took some blood and a cheek swab, and had me do an evil pegboard test and a weird eye test. That's it.

I'll go back annually or so they can see what it looks like to kick FA ass. It'll also give me a chance to ask where them treatments are.

The things I let the medical establishment do to me

And you can't see the ones on my chest, legs
and finger.

We got to the sleep study 15 minutes early because a certain little sister kept saying I'd be late if I left when Mom and I wanted. Actually, we'd have still been early.

But we got there, checked in, and waited.

Then a technician came and took us to a room, and we waited some more.

They put a hospital bed in for me, so Mom got to sleep in the double-bed. I got in it, and they hooked me up to all sorts of sensors. And then I went to sleep, sort of. I did not sleep well.

It was my first night in a hospital since I was born.

The technician was great, though. She watches you by video camera, and she heard me calling for Mom to turn on a light before Mom did.

If something was real bad, she said she'd put me in touch with the on-call doctor, but apparently it wasn't so I'll wait at least a week for my doctor to get the results. Then we can decide if I have sleep apnea.

Long day's journey does me right

The doctor's visit was good.

He gave me some medicine for my restless legs (well, a prescription). And it works! And it no longer makes me woozy.

And apparently, I am very, very, very unlikely to have FA-related cardiac problems. This pleased Mom greatly, but cardiac problems aren't a big worry for me.

He seemed unconcerned about my stomach issues, or untroubled by them. He did not think them indicative of great woe (just mediocre. HA, I kid).

And he thought I would benefit from hearing aids. I am a bit skeptical of this, but it would be awesome. Hearing was actually an area he thought we could do something about to improve my quality of life. He is going to reach out to some other doctors who did a hearing study on me and see what they recommend.

The other area he thought they could improve was sleeping. He did so with the restless leg medicine, but he also suggested a sleep study. I snore badly, and sleep apnea is not uncommon in FA patients. This  made the trip not a total bitter bust as sleep apnea can kill you.

Finally, he talked a lot about the treatments that are in the pipeline. I would be leery of doing that if I were a doctor to avoid creating false. Maybe he really thinks at least one will pan out.

I go for the sleep study Thursday.

PS: The doctor is Doctor Lynch at Children's Hospital of Philadelphia.

Interlude

I know I need to talk about the doctor visit but other stuff keeps popping up.

For instance, do you think  my teleworking brother-in-law was the first person to step away from a teleconference to pick a naked relative up off the floor?

Then last night I did start writing about the visit, but I had a situation that required Mom and a change of clothes.

Then today, I woke up after sleeping through the night -- with nary a leg kick.

This was, I assume, because of a medicine the doctor prescribed.

The only problem? I have felt off the whole day.