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.

Oregon?

 I finally bit the bullet and bought a new shower chair.

I say bit the bullet because I had to pay for all of it. Shower chairs are amenities or luxury items that insurance does not cover. Anyone who has used a shower chair will tell you that is the honest truth.

It was supposed to come this morning. But here it is evening, and my old shower chair remains in the shower.

The company called this morning. Apparently they shipped by new shower chair to Oregon.

That is the correct country but little else.

Bless my sole

My brother-in-law was helping me get dressed in the morning a few weeks ago and he was horrified by my socks. They’re “like sandpaper,” I believe he said. 

He let me borrow some softer socks and then he purchased me some socks that met his standards. 

I mentioned that I couldn’t really feel my feet, but I didn't press the issue because I hoped that softer sucks might help a relatively new problem I am having. 

The soles of my feet are quite tired and sore every day. I wondered if it might be related to my foot plate on the wheelchair because it can go up or down. But it's about as low as I can make it without my feet sliding off so I don't know what it is. 

It is not standing either because I haven't been standing regularly since my soles have been bothering me. 

I did try some insoles I have, but they cause my hammer toes to rub on the top of my shoes and cause pain.

At least I have classy socks now.

Bad night

 Last night was not an incredibly restful night for me.

I got in bed, but shortly after I did, my feet got really hot. I don’t like to take the cover all the way off because of how hard I know it will be to get back on. But eventually I had to uncover them — the hotness was making my feet jump. First the left one, then the right one, then both.

The lack of cover didn't really help, so I got in the lift and sat up in my bed for a while the watch TV.

That didn't really help either, so I used the lift to get on the floor and sat there watching TV.

That didn't really help either, but I was getting sick of sitting on the floor, so I got back in bed determined to put the mask on.

Of course, before I  could do that, my feet get cold and I needed to put them under the covers. 

As I knew it would, this task proved monumentally difficult and lengthy. After about 20 minutes I got my feet covered, but I was totally wired and not tired at all. The good news about this challenge was it made my legs stop jumping.

My awakeness lasted about five minutes and I was so tired it was a struggle to put on the mask. I thought about giving up, but I kept at it and eventually got the mask on.

And then I fell asleep.

In the morning, I took off the mask, and it fell behind my back, creating a new struggle. Awesome.

Tired and sad

I haven't written for a while, but unlike previous times when I could say it was hard to write, I don't have a good excuse.

I am just really tired, and with that really sad, about everything that Friedreich's ataxia saddles me with, sometimes something brand new and completely unexpected.

• The temperature regulation thing continues to be a real thorn in my side at best
• The sleep mask, even if I am used to it and able to wear it most nights, requires me to stay up too late  till I am really tired so that the mask doesn't wake me up when I put it on
• My feet are bothering me even when I'm not standing for reasons I can't explain
• My wheelchair has problems that it should not have for what is supposed to be such a wonderful chair
• My eyes are not working well together

I could go on but it would make me sadder and more tired.

Bad dream

Since I started dreaming I have been worried it would get me in trouble. 

Not Clyde Bruckman kind of trouble. He was a character on the X Files who could see people's deaths. 

Instead, I thought something like this would happen and tonight, or last night as I will be posting this on Tuesday after wiring it last night, it finally happened: I had gotten a urinal and was going to the bathroom fine until midway through I realized it was a dream. Well, part of it was a dream, the part where I got the urinal.

The bed was soaked. I was wet. I had to call my sister,

Fortunately, since I have been sleeping bottomless, which I have been doing since my sepsis last summer, I have not had to bother her much at night. I did last night.

And unlike Clyde  Bruckman, I have someone to trust.

Standing tall against Wretched So-And-So

My niece plays ice hockey for her college. She is the goalie, and they are playing in the conference championship today.

She is quite good, I am told. I don't really follow hockey because I can never see the puck.

I called up the semifinal yesterday on my phone right before my nap to just see the score. But I got sucked in immediately. The announcer seems like a big fan of my niece. He kept saying things like how stellar she was or she was standing tall in the net. Also, it was captioned— albeit badly. It kept referring to an opponent as “Wretched [common first name]." I think the common first name was her last name. I'm not sure what the wretched was.

Anyway, I got hooked. She seemed, to this very untrained hockey observer, to be playing well and she was shutting out the opponent. They only scored on a controversial play at the end of the game.

Before I knew it, I had no nap and it was time for dinner.

I went to bed early, but the lack of a nap makes it hard to fall asleep. I was up too late. My legs started jumping, first one then the other. I had problems getting the sleep mask on, then I had to take it off to get the lift around my neck, so I could use the lift to relax my legs.

The lift did work but I was not really well rested.

They play again today. Right before my nap. I'll probably watch.

Dreamy

Somehow, I do not think that the doctors who say the sleep machine is the greatest invention for me period, would think much of my most important condition for using the sleep mask. To be successful in wearing it, I try not to put it on until I am exhausted.

Putting it on earlier runs the risk of it waking me up and then not being able to fall asleep,. and that is a risk I won't take.

But Thursday night I was really tired, so I put it on an hour earlier than normal. I honestly am not sure what happened next.

I know that I felt like I was lying there awake for nearly an hour, but I am not sure whether it was real or a dream.

I wanna new drug

I took my first dose of statins last night to try to lower my cholesterol after the new drug for Friedreich's ataxia sent my cholesterol through the roof. 

I told my cardiologist that my cholesterol was high and that my personal care physician was going to retest my blood in the spring and start me on statins assuming they were needed. 

Apparently, that wasn't good enough. 

Which is one of the reasons I was a little annoyed to get this text that said how the drug store was working on a new prescription for me.

Eventually my cardiologist's nurse did email me but not before I got the text from the drug store.

Plus I told them this. It was nothing new.

If my cardiologist disagreed with my primary care physician, I sure wish he had told me when we were talking about it during my appointment.

Also, I am starting to get awful tired of this drug that is supposed to treat Friedreich's ataxia but so far has just raised my cholesterol.

Finally, I have been exercising 30 minutes almost every day this year, and I hoped that would lower my cholesterol, making statins unnecessary. That did not pan out. So why exercise at all?

I hate drugs.

Just like John Candy

When I watched Cool Runnings, the movie about the Jamaican bobsled team in the Olympics, for the first time what stuck out for me was not their cool rhyme or the various comedic touches, no it was that their coach, John Candy, slept in the Olympic Village at the Winter Olympics with his feet uncovered. I thought it was insane!

Now, though, I find myself doing the same thing albeit not at the Olympic Village.

My feet are hot and I uncover them, and they get cold. And of course they jump throughout.

Friday night, for instance, I wound up lying in bed and watching TV with no cover on. Then my feet started to jump, mostly the right one. I eventually got in the lift and rode around a little to try and relax my feet.

It mostly worked, but who in the right mind feels like riding around in a lift at midnight? Other than people with Friedreich's ataxia, that is.

Uncle Matty

The problem with not hearing well goes beyond not hearing well.

One of the biggest problems for me in conversation its finding a legitimate space to respond.

At work, I rarely speak in meetings, but if I have to, I have decided to just interrupt and ignore everyone so I can say what I need to. If I judge by what the captioning in our meetings say, I'm pretty sure they don't understand me. Or I can judge by the silence of people and their confused looks to tell the same.

For some reason, I find myself more unwilling to interrupt during our family zoom every Monday. 

We were discussing how we never referred to our uncles and aunts as “uncle or aunt so-and-so” and how my nephews and nieces generally didn't refer to people this way either. 

I would have liked to point out almost all of my nephews and nieces call me Uncle Matty. I'm sure it is a sign of respect.

Matty unplugged

I may be in the minority of people in wheelchairs who wear the seatbelt tightly.

It’s not that I find it particularly comfortable. My old physical therapist just hammered it into me that a seatbelt is not just to protect you from accidents , it is also needed to keep you sitting in the right place.  

I used the urinal the other day and slid back in my chair to get back to work. I automatically reached down to tighten the seatbelt. Only instead of pulling the seatbelt, I wound up pulling a cord and disconnecting my chair. 

I tried multiple times to reconnect it but wound up having to call mom. My Friedreich's ataxia laden body was not up to the task. Shocking, I know. 

What, you may ask , was a cord down where it's so easily unplugged? Good question. 

 The other day a wheelchair technician came over to install some new armrests. He pointed out that wheelchair companies tend not to fix things they don't have to. So even my Cadillac of power wheelchairs , which I love still , leaves a lot to be desired.

What to do

The latest problem with the sleep mask, not a new problem, just the biggest lately is the mask straps.

They are supposed to keep the mask tight on my face. In reality, they are an annoying joke.

First off, they tighten or loosen with Velcro. But for me, the Velcro just made it easy for the straps to come undone when I was sleeping. This sort of defeats the purpose of keeping the mask tight on my face.

So we put tape around them to keep them tight. This works, but of course I can't adjust the straps if I run into a problem at night.

They also change length or something, it seems, because my head moves at night shockingly. So it will fit when I put  it on but wind up being a bad fit.

The upshot of all this is I wake up in the morning with a really dry mouth and I'm not even sure if the mask is doing its job.

I talked to my sleep doctor about some kind of procedure to put an object in your throat to keep it open, thereby doing the job of blowing air into my mouth. He originally said it would not work for me. When I asked about it again, he said that my sleep apnea was not bad enough to require the procedure, but if I wanted to spend another night in the sleep lab, which is in the hospital, I could see if my apnea had worsened enough to make the procedure necessary.

 I had no desire then, or now, to spend another night in the hospital. I don't even know if I want something put in my throat. But I am increasingly tired of a sleep mask I don't think works well for me.

Sleeping soundly

I thought I had reached the pinnacle of my sound sleeping in college when I slept through most of my roommate’s successful efforts to break into our room via the window next to my bed.

Apparently, though, I have miles to go to show how soundly I sleep. I took several steps this week.

On weekdays, my first alarm goes off at 6:30. I get Fame her pill, then I take my pills. My second alarm goes off at 6:56. I basically just wake up and wait for my sister to come help me get dressed.

Yesterday, I woke up with both alarms but somehow fell right back asleep after the second one. I did not wake up until after my sister had put on one of my socks. We laughed and that was it.

I never anticipated that it would get worse.

This morning, I woke up with my alarms but fell back asleep. I then woke up as my sister walked in the door so I figured I had not missed anything. At least until I looked down. I had been completely dressed while sleeping — shorts, socks and shoes.

Kind of embarrassing.

Untracked

When I worked at a newspaper in North Carolina, I was young and idealistic, thinking I could change things. One of those things was the sports staff's regular use of the word untracked in the sense of “ the baseball player finally got untracked, hitting back to back home runs. “

Untracked really means the opposite, I told multiple people. I used the example of a train. If it were to get untracked, people would perhaps die as it went off the rails. 

They generally agreed with me but said it's just used differently in sports. So I gave up, not my last losing effort.

I was thinking of this today because I find that I get untracked in the correct sense of the word very easily.

I plan out what I want to accomplish that day or that afternoon, but if something happens, usually related to Friedreich's ataxia, I find myself just spending the afternoon playing a computer game or reading or whatever, not doing what I had planned.

If I did not have Friedreich's ataxia, maybe I could use it in the incorrect sports way about me. Because if I did not and Friedreich's ataxia, I could play sports.

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?