Diagnosis from hell

 As I lay in bed last night at 11:30 having just returned from the bathroom I thought to myself, What is wrong with me?

Almost immediately after I got in bed, I started getting too hot. I took off my afghan and uncovered my feet, so they were bare. But then they got too cold. So I re-covered them with my sheet, but then they got too hot. I uncovered and re-covered multiple times over the next hour or two. 

At some point in the covering and uncovering, my right foot started to jump.  That is why I was in the lift already and decided just to go to the bathroom to see if it would help relax my legs.

It seemed to work, but of course I was then wide awake from all my exertions.

So what is wrong with me? Oh right, I have Friedreich's ataxia.

I’m walking

 As Friedreich's ataxia continues to have its way with me, I am finding that there are fewer and fewer things I can do by myself for me and for Fame. 

One of the things I can do is take her for a walk, although I do need help with my coat and the rest door. Nevertheless, I mostly am on my own, so I have resolved to walk even on days I don't want to. Days like today, when the brass monkeys were certain to stay indoors.

I wore my parka, my snow pants chaps and my poncho. Because it was windy, I had my gait belt fastened around my thighs to keep the poncho from blowing.

I was still cold, and even when I was back indoors I was uncomfortable. I tried adding a warm shirt, but my temperature issues quickly weighed in. Essentially, I spent the afternoon in shorts and a T shirt.

Now I am in bed, writing and already am too hot.

A winter pleasure

This is a real blog it will become obvious at the conclusion. But I figure a warning is necessary because in the following sentence I am going to use pleasure and winter in an unironic way. 

One of the great pleasures in my life during the winter months is that I can wear sweatshirts. They are so warm and cozy. They almost make up for being cold.

I have hardly worn a sweatshirt for an entire day this winter because of my temperature issues.

Sunday, for instance, I wore warm clothes to go for a walk with Fame, but when I got home I put on sneakers and shorts.

When I was applying to colleges, I visited Boston College. There were a ton of people wandering around in February in shorts. This drove me crazy. Now I am one of those people.

What a sister

 It must have taken all of her control, but my sister did not say my plan to brush Fame while sitting on the floor was stupid.

It was, of course, and it was doomed to failure pretty much right from the start.

It's just that I have good memories of brushing my first dog, Claren, and it makes me sad that I can't brush Fame in the same way.

The plan today was to use the lift to lower myself to the floor, or actually, to lower myself to Fame’s bed and sit on that to brush her. My sister suggested Kenny’s bed because it has some traction on the bottom. So she got it and positioned it under the lift, that she left.

I lowered myself okay, but the problem was that I couldn't lean forward enough to brush anything. I also could not get my legs either spread wide enough to let Fame between them or close enough to my body to let Fame near me.

And of course, I was pretty wobbly.

So it was really  dumb and a waste of time. But my sister didn't let me know that. YAY!

Dose me up

 I am waiting to hear if I qualify for another drug study. Actually, it is not another one. It is a new phase of the one I took part in four years ago. 

This phase would be a long-term, at-home study of how the drug works over time.

All the participants in the study will get the drug and inject it into themselves. 

Although I was telling an older sister about this and she said I wasn't allowed to inject a myself. I I told her no, they said I could and would train me. She said no, she was saying I was not allowed to. Oh well. 

The drug, when I first heard about it, was presented as a cure, not just a treatment. That was by my neurologist, who is not prone to exaggeration. 

The drug inserts the part of the cell that is missing and Friedreich's ataxia. 

It said in the original email I got that no overnight stays in clinics would be required, but I am sure they will require regular visits to track me.  I am waiting to see where I'd have to go.

I would like to go if I get accepted because who knows how much more Friedreich's ataxia I can take?