Death mask or continence

I hesitate to say I am used to the bipap, or death mask as I prefer to call it. A night rarely goes by that I would not prefer to heave it onto the floor with a resounding crash — although if I tried I’d probably hurt myself, not it. 

I do, however, feel the benefits of regular use.

• I sleep better, waking up with more energy. 
• I sleep sounder, often not waking up in the middle of the night to use the urinal. It’s not a continence problem when I wake up in the morning either. 
• It seems to0 settle my restless legs. 

So the past few months,. I have been wearing it five to seven hours a night most weeknights, up to 11 hours a night on weekends.

Until last week.

In early December, my old insurer wouldn’t fill my expensive incontinence pill. They suddenly decided they didn’t cover it, though they did the previous several years.

It cost five times less at my current insurer, which I had already decided to switch to, and I wanted to see if it provided me that much help, so I decided to go off not till switching insurers in January.

I didn’t notice much fall-off after stopping the drug, but I decided to restart it last week.

But apparently, in addition to improved bladder control, it also causes one’s legs to jump.

I have trouble wearing the mask or sleeping amid jumpy legs.

Hence, I slept and wore the mask little last week.

Also hence, I am no longer taking the drug.

Part man, part monkey

In an effort to show a friend I live with the meanest sister in the world, I told a friend that my sister has taken to calling me Boots. This refers to Dora the Explorer’s monkey sidekick, who has similarly awesome taste in footwear.

It didn’t work.

“That’s adorable,” my friend replied. That’s an actual quote because we were texting.

Of course I didn’t want it to work. She’s great.

Just yesterday I found out my insurer denied my shower chair. I need a new one because I slip forward in my current one without the seatbelt, which I always wear.

I came back from a postwork walk to find her manually raising the front of the seat.

I guess I’ll be Boots.210

Thank you, Sid Meier’s Pirates

 My favorite computer game, Sid Meier’s Pirates, continues to pay dividends years after I first played it on the Commodore 64.  Lately, it has been helping me get up the driveway when my battery is running out, which these days is pretty much always.

Sailing west on the Spanish Main is slow going, at least in Pirates. The wind blows  west to east in the game, so you often need to sail into the wind, especially if you make your home in Barbados.

It’s still slow but tacking helps you sail into the wind. With the wind from the west, you sail on a diagonal, first north then south.

For my driveway, which is too  steep for my crappy chair and battery, I don’t head  straight up. I left or right and just a little up.

It too is slow, but it works.

Or not

 For Christmas, the Friedreich’s Ataxia Research Alliance sent me an ornament that is hanging above my desk. Actually, it was because I sent it a donation, I suppose.

It reads, “Together, we will cure FA! FARA”

Sadly, I no longer believe in a cure, for me at least.

On one of my last walks of 2021, I thought to myself, “Wow, if someone had told me a year ago the pandemic would still be around in the United States, I’d have been pretty surprised.” But then I thought, “If someone told me after my diagnosis 25 years ago there  isn’t even a treatment let alone a cure, I’d have been shocked.”

I remember talking to a genetics counselor after my diagnosis, and we decided that since my disease now had a name, they would know what to cure. 

Apparently not.