Nothing is good

 I just finished my second week of the new Friedreich's ataxia drug. The cost issue changed pretty drastically, from $6,000 a month to $80 to zero. I have no idea why.

I still can’t walk—that would have been cool but the medicine’s not supposed to do that.

But honestly I notice no change—good or bad.

The bad was what I was most worried about. I had read some horror stories in a Friedreich's ataxia group I’m in. 

My neurologist must have heard them, too, and seemed a little frustrated when I e-mailed to tell him I was having second thoughts. His reply was interspersed with all caps.

I started it soon after.

Finally, but ...

 For the first time since June 3, I am stent- and kidney stone-free and I have no more appointments related to stones.

Three weeks ago, I had surgery to break up my stones and replace the stent they put in the first day in the hospital. Two weeks ago, I had quick in-office visit to remove the replacement stent. Last week, I met with a doctor to discuss minimizing future occurrences.

It is truly a relief to put this behind me. But my Friedreich's ataxia is hitting hard and leaving me so tired and overwhelmed.

My stomach hasn’t really got back to normal yet, so I am backed up frequently. His actually is probably the result of the stones, so maybe I am not really over it.

My body temperature has become a hassle.  My feet go from cold to hot and back again when I am in bed. Or one body part will be hot, another cold, a third lukewarm—all at the same time. I have enough problems sleeping. I don’t need that.

I do seem to be using the sleep machine nightly, but it remains a challenge to put on. I don’t see much benefit either.

My legs have been really restless, too.

It’s hard and unlikely to improve.