Silly me

 In retrospect, it was pretty stupid, but hammer toes aren't especially unusual in the normal community, meaning the people without  Friedreich's ataxia. So when I was going to the podiatrist Monday to see about my hammer toes, it seemed legitimate to hope for one medical issue that would not involve FA. Keep dreaming, FA said. 

First, the doctor wanted to X-ray my feet. We have an X-ray machine, but you have to be able to stand. You will have to go to the hospital, I was told.

Then the doctor wanted a circulatory study to make sure my feet get enough blood to heal properly. Of course, they don't get. That's why my feet are always cold and have a nice purple tinge to them. Thank you, Friedreich's ataxia.

That wasn't the only issue I was dealing with Monday. 

My shower chair, which was supposed to come three weeks ago, was supposed to be delivered today. That did not happen. I suppose sooner or later I can file a theft lawsuit or something because they took my money.

I also managed to get stuck under my desk.

The Dread Pirate Roberts wouldn’t take this

 As the wait for my misdelivered-to-Oregon shower chair increased, I amused myself by imagining what in the world it could take so long to get from Oregon.

As we neared the two week mark Tuesday, I decided planes, trains and automobiles were out because it wouldn’t take that long to get here from Oregon.

My latest travel fantasy was that they employed a 16th century English merchantmen ship to travel around the bottom of South America and up the East Coast to me. However, they ran into problems on the East Coast of the Spanish Main and were attacked by the Dread Pirate Roberts who stole the shower chair.

But it all came to naught when I got a text from my wheelchair rep telling me that it was coming next Monday. I pointed out that that was a long time for a trip from Oregon and his response was call me.

I asked Mom to call and he apparently told her that the chair was sitting in a warehouse, not on a merchantman. I don't know how long it has been in the warehouse. I don't know whether it was even in Oregon. I do know that I am pretty disgusted.

And that wasn't the only issue with the healthcare industry.

The drug I am taking for Friedreich's ataxia was late this month, so we called, or Mom did. They said that I need a new prescription. That would be more believable if:

• They had not requested a new prescription in January. They said this time that that prescription was just for insurance. I don't know what that means.
• More importantly, it says on my bottle of the medicine that I have six refills left.

Is it any wonder that no one likes the healthcare industry?

Sleeping better??

 After several nights last week when I was unable to wear the sleep mask , I am ready to admit that it helps me sleep better.

I sleep more soundly, I do not wake up as much, and I feel better when I do wake up.

The jury is still out, though, on whether the improved sleep is worth the hassle, especially for someone who has Friedreich's ataxia.

One night last week I was unable to wear the mask because it was too tight on my face. We have had to put tape around the straps so I don't accidentally pull the velcro loose. Thus, I am unable to loosen the straps on purpose.

The other night I couldn't wear it because the air blowing in was too warm. I cannot adjust the air temperature on my own.

There is a device that is implanted in one's throat that opens the air passage that is closed off in sleep apnea.-

I asked my sleep doctor several years ago if I could use this device. He left me a long voicemail telling me why it would not work for me. As I recall, the main reason was that my sleep apnea was neurologic and would not respond to the device. This made sense to me so I didn't push it.

I asked him again in the last year, and his answer was completely different. He said, this time anyway, that I did not reach the threshold for using the device, but if I wanted to spend the night in the sleep lab again, they could see if I now reached the threshold. The sleep lab is located in the hospital where I spent too much time last summer, so I did not want to go there of my own volition. I still don't.

I am also not convinced that my sleep doctor would not take a closer look and say, "oh yeah you're not eligible. You have neurologic apnea."

I still have to stay awake until I am really sleepy to wear it successfully. I'm not sure that doesn't defeat the whole purpose of sleeping better.

Bidet blues

 My sister almost got my call at work today asking her to go home and help her brother, me, off the bathroom floor. 

I was home alone with the dogs, and I went to the bathroom. The bidet seat does not sit very tightly to the toilet. Or perhaps it does for normal use, but when people have Friedreich’s ataxia, nothing is normal.

It came quite loose, which I noticed when I was getting ready to pull up my pants. I decided I better get up cautiously and probably not try and sit back down on the loose seat. 

I pulled up my pants while standing, and  then  I moved the lift with me in a standing position a little off the toilet.

My plan was to lower lift so I’d be on the floor. I could then recover  and put the lift leg braces on. But things didn't work out right, at least not at first. My legs stayed under me the entire time, so when I lowered down like I was kneeling and couldn't put the leg braces on.

So I raised the lift quite high so I was standing on my tiptoes   and then lowered it, keeping my legs in front of me. 

That worked. I was able get completely down with my legs jin front and then put the leg braces under my legs and then I was able to raise up and get to my wheelchair. No problem.

Sleep trouble

 I woke up at 2:41 last night, about three hours after i had fallen asleep — after a usual night of being too hot and my legs jumping. Kind of pathetic I now consider that normal.

I am not sure why I woke up, whether it was a dream or the sleep machine messed up. But I immediately felt that I was choking to death. Well, maybe that is too much. I knew I wasn't choking to death because I could still cough. And cough I did …. A lot.

I also drink some water and eventually it settled down and I went back to sleep.