Dreamy

Somehow, I do not think that the doctors who say the sleep machine is the greatest invention for me period, would think much of my most important condition for using the sleep mask. To be successful in wearing it, I try not to put it on until I am exhausted.

Putting it on earlier runs the risk of it waking me up and then not being able to fall asleep,. and that is a risk I won't take.

But Thursday night I was really tired, so I put it on an hour earlier than normal. I honestly am not sure what happened next.

I know that I felt like I was lying there awake for nearly an hour, but I am not sure whether it was real or a dream.

I wanna new drug

I took my first dose of statins last night to try to lower my cholesterol after the new drug for Friedreich's ataxia sent my cholesterol through the roof. 

I told my cardiologist that my cholesterol was high and that my personal care physician was going to retest my blood in the spring and start me on statins assuming they were needed. 

Apparently, that wasn't good enough. 

Which is one of the reasons I was a little annoyed to get this text that said how the drug store was working on a new prescription for me.

Eventually my cardiologist's nurse did email me but not before I got the text from the drug store.

Plus I told them this. It was nothing new.

If my cardiologist disagreed with my primary care physician, I sure wish he had told me when we were talking about it during my appointment.

Also, I am starting to get awful tired of this drug that is supposed to treat Friedreich's ataxia but so far has just raised my cholesterol.

Finally, I have been exercising 30 minutes almost every day this year, and I hoped that would lower my cholesterol, making statins unnecessary. That did not pan out. So why exercise at all?

I hate drugs.

Just like John Candy

When I watched Cool Runnings, the movie about the Jamaican bobsled team in the Olympics, for the first time what stuck out for me was not their cool rhyme or the various comedic touches, no it was that their coach, John Candy, slept in the Olympic Village at the Winter Olympics with his feet uncovered. I thought it was insane!

Now, though, I find myself doing the same thing albeit not at the Olympic Village.

My feet are hot and I uncover them, and they get cold. And of course they jump throughout.

Friday night, for instance, I wound up lying in bed and watching TV with no cover on. Then my feet started to jump, mostly the right one. I eventually got in the lift and rode around a little to try and relax my feet.

It mostly worked, but who in the right mind feels like riding around in a lift at midnight? Other than people with Friedreich's ataxia, that is.

Uncle Matty

The problem with not hearing well goes beyond not hearing well.

One of the biggest problems for me in conversation its finding a legitimate space to respond.

At work, I rarely speak in meetings, but if I have to, I have decided to just interrupt and ignore everyone so I can say what I need to. If I judge by what the captioning in our meetings say, I'm pretty sure they don't understand me. Or I can judge by the silence of people and their confused looks to tell the same.

For some reason, I find myself more unwilling to interrupt during our family zoom every Monday. 

We were discussing how we never referred to our uncles and aunts as “uncle or aunt so-and-so” and how my nephews and nieces generally didn't refer to people this way either. 

I would have liked to point out almost all of my nephews and nieces call me Uncle Matty. I'm sure it is a sign of respect.

Matty unplugged

I may be in the minority of people in wheelchairs who wear the seatbelt tightly.

It’s not that I find it particularly comfortable. My old physical therapist just hammered it into me that a seatbelt is not just to protect you from accidents , it is also needed to keep you sitting in the right place.  

I used the urinal the other day and slid back in my chair to get back to work. I automatically reached down to tighten the seatbelt. Only instead of pulling the seatbelt, I wound up pulling a cord and disconnecting my chair. 

I tried multiple times to reconnect it but wound up having to call mom. My Friedreich's ataxia laden body was not up to the task. Shocking, I know. 

What, you may ask , was a cord down where it's so easily unplugged? Good question. 

 The other day a wheelchair technician came over to install some new armrests. He pointed out that wheelchair companies tend not to fix things they don't have to. So even my Cadillac of power wheelchairs , which I love still , leaves a lot to be desired.