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.

I can be stupid

 Another problem with using the streets or sidewalks to walk ones dog is poop.

Not  that the roads are running with refuse. At least not in my city. It’s just that there often isn’t a good spot for the dog to poop and there is almost never a trashcan to dispose of said poop. This isn’t bad if you can tie up the poop in a bag. If you are using a pooper scooper, it is a  bit more problematic.

But it was a cool, really sunny day, so my preferred trail was out. I took to the streets.

Fame pooped, and I picked it up. I was heading down a quiet road whiten I saw a park with a trashcan.  Score!

But then I noticed it was off a gravel path and the gravel was about an inch below the road. I hemmed and hawed but finally decided not to risk it. My sister and husband were en route to Vermont to take my nephew to college. Better not to chance it.

But …. As I turned away from the park, one of my black wheels slipped off the road into the gravel. It’s fate, I decided, so stupidly I barreled down to the trashcan.

It was bumpy, but I got down there easy enough. 

Notice I keep using “down.”  

Returning to the street meant going up. I didn’t make it.
 I started to back up and try again. Then I got stuck going back.

A this point I texted a friend for help. Then I looked around and realized this would need the fire department not a friend or two.

So I texted my friend back and said never mind, then texted Mom and asked her to call the fire department. The problem was the park is right in the middle of my city and another one, so it took a while to figure out jurisdiction.

While they figured, Mom came.

My friend awesomely decided to come out anyway, too. She got me into the grass, but I still had too get to the street.
That’s when the firefighters showed. It was quite fast really. 

I drove; they pushed — easy-peasy.

What a day. Oh poop.

Taking it to the streets

After using sidewalks a fair bit last week, I have reached a conclusion: Unless you want to hum so every bump causes an  odd sound, sidewalks aren’t for wheelchairs. 

Even new sidewalks are bumpy. 

Old ones like most of the ones near me are narrow, bumpy, cracked, have utility poles in the of them and 60-degree curb cuts,   and God forbid you inch off one of those narrow sidewalks. The ground next to it is inches above or below.

The street’s safer.

Yay nurses

 One morning in the ICU, I woke up early and glanced at my chest. It was covered in blood.

I was so confused.

I wasn’t in any pain, but blood was everywhere.

I hit the call button and when a nurse I didn’t know looked in, I said, “I don’t know what happened.”

Her response was: “Let’s get you cleaned up,” and while she got some help, I found the problem.

I had ripped out an unused  IV thing in my right wrist. It was probably the best one to rip out. One was in use. One was in my neck and was Inserted via ultrasound. Another also went in with ultrasound and was pretty painful going in, so I’m sure would have hurt being ripped out.

My nurse  came in, and I showed him the problem. “Happens all the time,” he said, and he and the other nurse cleaned me up.

I have lots of people who help me, doing all sorts of stuff, but we’re related. Nurses — yes, they get paid — it still boggles m mind.