At least I have hairy arms

 It's been a little over 26 years since I learned that I have Friedreich's ataxia. I don't think I have ever been as pessimistic and sad about my FA as I have been recently. 

Certainly, the disappointment of the drug trial plays a significant part. But the inability to have any type of temperature regulation is having a real effect. Take any night this week: I cover myself with a sheet then uncover myself and go back and forth numerous time. Similarly, I turn the ceiling fan off and on. I put a fleece over my arm and upper body and then I take it off because I am too hot. Last night, I wound up falling asleep with a wet washcloth on my forehead to try and cool me off.

That doesn't even include the daytime hours spent feeling like my body is drenched in sweat only to realize my skin's bone-dry.

I honestly don't know how I can survive this for any length of time. Although I am not sure there’s another option beyond just deal with it. 

Another issue is a recently completed natural history study about Friedreich's ataxia that I did. It asks if one’s hearing or incoordination or incontinence or whatever had an effect on your lifestyle in the past four weeks. Honestly, it didn't for me — not in the past four weeks, four months, or really four years. That's because these things have been going on for a large part of my life and I've adjusted to them years ago. So no, my fatigue does not inhibit me anymore but that is only because I have learned that I need to take a nap in the afternoon after work. And I know that I need a lot of sleep on the weekend to recover from the week 

So with all that going on, it was nice to hear my cardiologist saying we should do an echo only every other year instead of annually. He feels that things are fairly stable heart-wise. It doesn't really make up for the rest, certainly not when I was told I was unlikely to have heart problems a few years ago. But I suppose I better take what I can get. Although I refuse to consider the older man who complimented me on my hairy arms a positive.