Poor Matty

 Whenever I tell one of my friends about a story my sister’s dog, my friend responds, “poor doggie,” except she uses the dog’s name.

Granted  the stories I usually tell involve him being the butt of Fame’s bullying or those very rare occasions when he chooses not to use his finely honed intellect.

But this tale totally merits my friend’s normal response.

My sister’s dog has seizures, which until two weeks ago were controlled by medicine. 

But two weeks ago he  began having them again, four in one day. He went to the emergency vet  and had another.

They kept him overnight and put him on another drug. One of the side effects of the new drug is temporary ataxia.

He came home and was doing OK, except for wandering around like a drunk or someone with Friedreich’s ataxia.

But on Wednesday he vomited. 

This was particularly bad because my niece’s first parents’ weekend was that weekend.

They eventually went, leaving him in the care of me, my nephew and Mom. I did nothing really.

He looked awful that weekend. He was on rice and broth, so he had nothing in him to counteract the drug. Plus, his mom, my sister, was gone.

As soon as she got back, he started improving. At the two-week mark — today — you can see the ataxia but only if you watch closely.

I want a two-week ataxia.

My nephew gets it

One night this week when I couldn’t sleep (it’s been  a regular thing this week sadly),  I was reading a post from the Facebook group “FA’ers only.”Unsurprisingly, it is for just people who have Friedreich’s ataxia (plus a dad of an FA patient who knows everything).

The poster asked the life expectancy of people with FA.

Because it wouldn’t be Facebook without rudeness, someone quickly weighed in that it was an inappropriate question.

What surprised me, though, was the number  of people who wrote in something along the lines of “I don’t have cardiomyopathy or diabetes, ao I expect to live a normal length.”

I don’t have diabetes. My cardiomyopathy is minor and controlled.

But I am sure FA will kill me, and I don’t think that is very pessimistic.

Maybe I’ll choke when drinking. My nephew always asks me if I am OK when he hears mne cough and we’re home alone. 

Maybe I’ll fall.

Perhaps I’ll sneeze when I don’t have a chest strap on.

I can go on and on. That’s my point. Diabetes  and cardiomyopathy are just two on a list of a 

bad things

One shoe off, and one shoe on

Sleep during wartime

 If I wear my sleep mask four hours tonight, I will have worn its least four hours — the minimum I’m supposed to wear it nightly — for a week straight.

At first,  I thought that would be cool. The app on my phone has never shown a seven-day streak.

But then I thought, who cares?

It’s not like it has gotten easier to wear or put on. It hasn’t.

It’s not like my legs have stopped jumping. They haven’t. They have gotten modestly better recently after I added to my medicine and been talking a supplement. I still had my worst night Saturday in recent  memory because of my legs.

It’s not like I don’t wake up most mornings feeling as if someone has been pouring sand in my mouth. I do.

It just means I have been able to tough it out for a  week.

How is that restful — to go to bed every night knowing you are going to have to go to sleep in a war?

Writing shouldn't be this kind of hard

I had a thought today to explain my lack of blogging. And to me, it is more scary than the pandemic.

I had just come back from my walk with Fame, during which I had composed emails I need or want to send, three or four.

But when I got home, I didn't want to type them out—it’s too hard.

That terrifies me, losing my writing because the physical process is difficult.

I will try a dictator program, though the last one I tried didn’t like my voice.

Plus, that’ll mean no music.

SIGH