whatdayasay?

 I have been hearing  one of my uncles lately. He died a few years ago.

I’m not sure why I keep hearing his greeting “whatdayasay?”

I don’t remember that he loved Christmas. In fact, I recently heard he hated carols. The only Christmas memory I have of him was when he scooped  up the used wrapping paper one year, disappeared for a bit, and returned with newly wrapped presents. Well that, and he bought us Missile Command for the Atari 2600.

I am glad too hear it, though. Most stories surrounding him make me laugh, and holidays rarely leave me laughing.

Merry Christmas

Let me start by addressing the elephant in the Nativity (No, I don’t have a Babar figure, although …).

Two of the angels are still in their packaging.

Honestly, though, I just like how it looks. I am under no illusions that my nephew or niece will be able to retire by selling them.

Also, I was watching NewsRadio recently, and after Andy Dick’s Matthew got fired, the team was recalling Matthew’s favorite holiday traditions. One was making a Nativity out of Marvel action figures. On the one hand, Matthew is a dork. On the other, what a grand tradition.

Now that those are out of the way:

From left, we start with Santa, then a couple of California raisins. Santa is obvious, so probably are the raisins.  “And suddenly there was with the angel a multitude of the heavenly host …” Two is a little small for a heavenly host, but you couldn’t fit a host in a manger. They are the witnesses who then return to the big crowd.

The little guy up front is a hobbit. We called him “New Kid on the Block,” pre-boy band. He is just an adventurer who happened upon the Nativity. A veteran of D&D campaigns and rock battles, New Kid is probably just looking for treasure.

The angels over it all are new to me. The Rocketeer remains one of my favorite superhero movies, even in the face off glitzier offerings. It’s just so fun. But I can’t wait for Captain America in a movie. Beyond angels, they serve as lookouts to prevent harm to anyone.  

The three kings are on the shelf:  the Penguin (also new), the wobbly robot and skateboarding Snoopy. The only problem is that the shelf is actually west of the Nativity. Clearly then, the wisemen from the East got lost.

The Big Three are next.

 Finally, Thor who is clearly the muscle. Check out that arm. If need be, she will make short work of the Star Wars villains in front of her.

Both original ‘70s-era Greedo and Darth Maul, the best thing about the prequels, begged to be in the Nativity, promising to be on their best behavior.

Greedo wants a chance to prove that Han was wrong to shoot first while they had what Greedo says was a civilized discussion. Darth admits he was on the wrong side of the whole Anakin thing and wants another chance to save a savior.

And everyone wishes you a merry Christmas.

Wide awake sadly

 Anne Lamott has her “aunties,” her butt and thighs nicknamed on a Club Med trip, but I too name body parts.

In deference to Mom, I won’t say what I call my calves and feet when they jump and keep me up till  3 or 4, but they most definitely have names. Honestly, it’s in deference to modesty, too (I am clever at 3 a.m.)

This past week, they got a lot of nicknames. One night, that’s all,  one night they did not jump.

I spent most days in a haze and most nights waiting with dread for the itch that precedes the jump.

Making things worse, my sleep mask was unbearable.

This week can’t be worse, right?  

Drowning in bed

 Not content to merely aggravate me when I am trying to fall asleep,  my sleep machine decided last week to try to kill me.

I wish I were kidding.

As I was going to bed, I turned the machine on. It has been having issues, so I just wanted to confirm all was good.

Instead, water flooded out the mask, an obvious attempt to kill its master.

I do figure water will kill me eventually but always thought it would be through choking not drowning.

We changed the tube, dried everything out and it has been fine.

But a killer bipap? Like I don’t have enough to worry about.

Never Batman

 I’ve reached an odd conclusion last week, at least for someone who wears a shirt that says, “ALWAYS BE YOURSELF!/UNLESS/YOU CAN BE/BATMAN/THEN/ALWAYS BE BATMAN.”

I don’t really want to be Batman. 

Bruce Wayne, however.

It’s not that he has more money than anyone or that he dates supermodels. For sure, those things don’t hurt.

But it’s Alfred that makes me want to be Bruce, or any butler.

On Wednesday, I let my sister sleep in and got up myself. It was so tiring.

I’ve said before how overrated independence is. Let me confirm. Give me dependence and just let me be rested.

I guess asked for this

When I applied for the scholarship for my standing wheelchair, one of the answers to the “why do you want a standing chair” question had to do with regularity.

I am pretty sure that my semi-regular irregularity has to do with sitting constantly. Surely, standing would help.

And it has, maybe too much.

Even when not constipated, standing runs the risk of cleaning me even more.

At least I know sitting is to blame.

Nephew awesomeness

On Wednesday, everyone was in bed  by 10 except my nephew, who was his late-night hockey practice.

“In bed” for me means I watch TV for a while from bed.

About 10:30, I had to use the lift to get to the bathroom —  no problem. Returning to bed was also fine.

Except I couldn’t get the covers back over my feet.

I didn’t want to call my sister again (yes, I have called her to cover my feet). 

I decided to text my nephew and ask him to stop by room. He said OK. 

In retrospect, I should have said why or something to explain that it was not an emergency.

When he came in, he looked around. I pointed at my feet and then said I needed him to cover them up.

He laughed and said he thought I had fallen or he’d need to clean something up.

He knows me well.

Despite his concerns, he still came to my aid

He is so cool.

I need to speed

 I like to keep my wheelchair turned on, even when I am not going somewhere.

This causes me trouble.

Not really because I accidentally hit it and careen somewhere dangerous, although that does happen on rare occasions.

No, the trouble is from a certain someone in my house yelling at me.

One problem with power wheelchairs is their inability to move if they aren’t turned non. They also take a second or two to start up.

If you have to get somewhere in a hurry, as I often do, those can be crucial seconds.

I did this already

 Just when I thought I was out...they pull me back in.
The Godfather: Part III

I have not worried about a fib for years.    

My cardiologist has suggested I see the surgeon who did my cardiac ablation to make sure my a fib isn’t returning. I demurred. 

I told him the surgeon saw me four times and did not suggest seeing him again.

I also said I didn’t want to see two cardiologists and needed him to follow my possible a fib.

He put me on a two-week heart monitor, which I started Tuesday.

Tuesday night I was up late watching a multipart arc of The Rookie when I felt weird.

I figured I was just tired but eventually took my ECG on my watch to confirm I was fine.

I was in fib.

I called my long-suffering sister. When she got to my room, she asked me to take it again.  

It was normal.

A little later, I was back in a fib.

The on-call cardiologist said it didn’t sound like anything imminent was gong to happen, so we just  called my doctor Wednesday.

Also Wednesday I noticed I forgot to take my heart pic Tuesday because I was fasting before some bloodwork. One of the RNs said that likely explains the a fib.

Apparently, nothing was at all imminent because I still haven’t heard from my doctor.

Slow

The chief reason I had the lift installed was so I could get to the toilet myself, and I can. It’s great.

I don’t have to wait for someone to help me transfer, use the lift or transfer me.

But I still have to get on the toilet before I have to go to the bathroom.

It takes me so long to get in the lift.

I’d rather be slow and on my own but still.

It should have worked

 Whenever I pull up my pants while in the lift, things get smooshed and ill-arranged if I need to use a urinal in a hurry.

This happened with the manual lift, too, but it was only a few days ago that I had a solution.

I only wish it worked.

I hypothesized that I could remove the leg brackets  from around my legs when I was ready to get off the toilet.

Then I could use the lift to raise me into a standing position, pull up my pants, sit back down, reaffix the leg brackets and transfer to my chair unsmooshed.

My trial run with Mom pulling up my pants was great.

Me doing it all? Not so much.

Mom was here but not helping. 

The first problem? The lift kept my arms from reaching my pants. I kept having to sit down and pull them up a little higher.

The real problem was my arms also couldn’t reach the lift remote.

 At least not well.

I finally got it and raised myself but then I needed to sit back down. I pressed the wrong button, however, raising myself onto my tiptoes, then totally in the air.

It was really hard not to laugh.

Mom stepped in then.

I think i need another solution.

Good but

 After I used the lift today to use the toilet, I said to myself something like, “one down.”

I do this a lot. “One successful bipap night.”

It’s like I am counting toward something. Like once I hit  50, I get a pony.

Or maybe I’m counting down to something? As if I don’t know that I’m going to sing a lift and bipap till I die. I regret using neither, but to pretend either is easy would be a lie. 

I’m a big boy

I’ve actually been going to the toilet by myself these days. 

Pretty cool.

Using the lift is challenging but not too hard, and now  I have a theme park in my room!

Up in the air

 I sent this to my sister Friday night to show off my new lift. (Yes, I am wearing leggings and Uggs. It is fall.)

Less than 15 hours, the remote died with me 10 inches above the toilet.

We chatted with the salesman/installer. Nothing he suggested worked, so with my nephew’s help, we  put the body support back on my manual lift and used the controls on the motor in the ceiling  to park the lift on the charger.

Then I went for a walk.

When I got back, it worked.

The guy had us do a hard restart then and attributes the lift working to that.

I am not so sure, given it was working before the reset.

I have no doubt the company will get it working right. I have less confidence that everything is copacetic now.

A good night

I had what qualifies for me as a good night last night.

I fell asleep about 11:15 with the sleep mask on. I slept till 2:20, when I woke  up to use the urinal. 

I fell back asleep about 3, again with the mask and slept till I had to get yp.

Of course, from 2:30 to 3, I was in the shower, while my loving sister changed my bed.

That urinal I used? Apparently, I just freaked I had got one ready.

But no restless legs.

Definitely bad

This’ll be quick but want to throw it out.

I was talking to a diversity person at work about ableist language.

She said we don’t want to use words that suggest being disabled is bad.

A person with a disability is not bad.

I cannot think of much worse than being disabled.

For instance, certain disabilities require you to use closed captions, which can mistranslate the words of a diversity expert (although I don’t think that’s what happened).

Still standing

 I’m still standing and still loving the new chair.

Front-wheel drive is a challenge. It turns sharply. 

Because of that, I have pinched my arm and finger between the wall and the chair. Making matters worse, my hand has been stuck on the joystick, keeping the pressure on the various body part. 

Two problems deal with Fame.

She doesn’t like not having my lap to drop her ball on when I stand when we are playing. Worse, this chair has two footplates and a cover right above the footplates that she knocks off when trying to put them down. Thinking on what to do.  

But other than that all good.

I'm cool

 

About 20 years ago, I received in the mail a wheelchair catalog from a company called Permobil. It was … interesting.

All the wheelchair users were attractive young adults with “come hither” looks.

It worked, though. I read about Permobil and learned they're a top wheelchair company.Ever since, I have associated Permobil users with the cool kids in wheelchair land and wanted to join them. 

After many insurance hassles, I have! And let me tell you, it was worth it.

Facing the 9-hole peg test

When I went to the Children’s Hospital of Pennsylvania last summer, I didn’t have to do the nine-hole peg test. Silently I cheered as this torture seemed behind me.

Fast forward to last week. I had to do it four times.

Actually I didn’t have to. The woman asked me several times if I wanted to, especially after the first try when I must have taken a minute a peg.

But one of the reasons I go to CHOP is so they can study me. I’d almost anything for them.

Other than that, not much. 

The neurologist liked the idea of the  standing chair. He said it will help my bones, which in Friedreich's ataxia people are prone to weakness. That part about bone   weakness was news to me and would be news too to my insurance doctor who said standing does nothing for FA.

The neuro said the first FA treatment would be out in about a year. The drug essentially takes you back two years FA-wise and keeps you there. Unfortunately, he made the same prediction last year.

Finally, he said it sounds like I had a good year. So yay.

Hard but lucky

     My plan last night was to write about how life shouldn’t be this hard.

That thought was spurred by my inability to flip the waistband on my boxers while I was on the toilet. 

I was trying to that so I could pull up may pants so I could get my nephew to help me up. Not that  he’d care. He’s relatively unfluster-able. Pulling  my shorts up was for me.

The other issue that made me long for an easy life is that when I bent down to try to fix my boxers, my fingers got tangled in the rope tied to the flusher. This resulted in a weak flush that stopped my toilet up.

But I didn’t get to write that blog. Depending on how you view why, it can either be an additional difficulty or it can be interpreted as one of my many blessings.

About a mile or so from home on my return trip on my nightly walk, my battery died. 

I turned my chair off and on and lowered my speed. That got me to the street Mom and Dad live on.

As I went up the street, though, I got stuck in the gutter and repeatedly turning my chair off and on didn’t give me enough power to escape the gutter.

That’s when a friend who lives up the street happened by. 

She pushed me out of the gutter, then walked in front of me the rest of the way. Then she pushed me up the driveway and ramp.

OK,  life is hard, but I am lucky.

I have a new doctor

I loved  my previous personal care physician, but the logistics became too much.

She has a lot of patients, so you often wound up waiting at the office. I didn’t really mind — you wait at doctors offices, right?

But when I was told I’d have to wait 11 months for a physical, I decided to switch.

My sister had been touting her doctor (and my brother-in-law’s and a neighbor), and as much as I hate to admit it, she was right.

He opened the door to see me while my sister was still filling out forms.

And more.

I sent a message on the portal yesterday because some of the bloodwork seemed pretty out of whack. He must have seen it this morning, a Sunday, and he uploaded and commented on the results.

Basically, I’m OK,  or as OK as usual.

Wow.

Rotten excuse

 A column on the Washington Post website by a woman with multiple sclerosis says that cursing is a way to a better life.

She talks about saying, “F#@% you” as an introduction to a group of people with disabilities at a conference. People laughed and smiled and replied, “F&^% you, too.” 

If I were to curse, it would be to say, What the fu…”

I get many of her issues — lack of control, sadness over her failing body.

But if someone I wasn’t very close with greeted me by cursing me, I wouldn’t smile.

She admits that “some can’t relate, [but] others understand.” I understand her argument — that breaking the rules is a celebration of life — I just don’t find it particularly engaging.

There is an episode in Joan of Arcadia, when her brother who is in a chair is encouraged to shoplift by a sales clerk just because he is in a chair. He starts stealing regularly, daring people to confront him. Finally, his little brother does.

Rules are rules. Break them if you want. I don’t care if you curse. Just don’t use your disability as an excuse.

Sleepy? Just during the day

Lest you think that my silence on the sleep issue means all is good, last week I wore the sleep mask not at all during the week. The mask would wake me up when I put it on. I started off strong this week… until last night.

I was tired but not real sleepy when I  tried to go to sleep around midnight.

But I put the mask on and when to turn out the light.

The switch flew out of my hand, hit my forehead and skittered under the bed.

I tried to go to sleep with the light on but was even less sleepy. I finally called my sister to turn off the light at the wall.

That meant I had to take the mask off because playing pantomime at 1 iS not in my skill set. 

Removing the mask set off my left leg,  which kept me up till 2.

So no, not sleeping well, not liking mask.    

One small step for Matty

When I was younger (“but still old enough to know better,” my sister will shortly start yelling), we went to the beach.

Like most a beach houses, this one had a long deck. And like most beaches, this one was windy.

I was newish to wheelchairs, and instead of flying a kite, I decided to fly myself, more or less.

Enlisting my oldest nephew who was probably 7, I had him help hold up a towel to grab the wind and rocket my chair across the deck.

The wind had other ideas and flipped my chair. 

I was not hurt and unrepentant about trying things some may dismiss as stupid.

I was thinking of this Wednesday when a lift salesman visited.

I am having a track lift put in, and he mentioned that come clients use the lift to walk.

AWESOME.

I am confident my nephew and niece will help me.

And my sister is right: I was old enough to know b better. Of course holding the towel above my head would destabilize the chair.  I should have affixed it lower.

No recent muggings

I have a rather frightening thought about why I am not writing more: Bad things keep happening and sucking the will to write right out of me.

Not like I am being mugged. Although my sister did recently threaten me with violence. Apparently, I apologize too much.

No, I mean bad things related to Friedreich's ataxia.

For instance, I planned to write Sunday, but my right foot got trapped under the lift and scraped it up. I just lost all desire to tell you how my city, which feels it is very accessibility-minded, finally reinstalled trash cans on the trail where I often walk Fame. It is right behind a 4-foot caution pole, meaning a wheelchair has to take extreme caution to reach it. Even going very slowly, I still had to go in the grass. The new rule for Fame: no pooping after rainy days,

I planned to try again Monday afternoon, but while on my walk, my left foot fell off the footplate and my left foot got wheeled over.

At least I haven’t been mugged.

Good news

 After more than a year of  working toward a new wheelchair,  I got some good news.

Not from my insurance. “Insurance” and “good news” don’t belong in the same sentence, in my experience, which dates back to their refusal to cover a test our neurologist had prescribed to see  what the hell was wrong with me and my brother.

Anyway, my wheelchair salesman recommended I apply for a program the wheelchair maker has for people rejected by insurance.

I did and they gave me half off what insurance didn’t cover.

My hope is to have the new chair by Labor Day.

Where do I sit?

I went into the office Wednesday for the first time since 2020. It was just for a couple of hours and was kinda boring.

I did see one of my really good friends for the first time since she had her baby, so maybe it wasn’t boring.

I had to update my ID, and while I was there I cleaned out my desk. Well, I told my sister what to take out of my desk.

Other than seeing my friend, the most exciting part was finding my desk. I forgot what floor I  was on.

Dangerous walk sign

 Fame has been learning how tops the button at a crosswalk on the W&OD Trail because folks in wheelchairs can’t access the button on the other side of the street.

I have pointed this out to managers twice. Once I got no response. The next time I got an assurance to look into it but nothing happened.

Then I started teaching Fame, but I decided today it isn’t worth it, not that Fame doesn’t learn. It just is not clear to me what the walk sign does. It does not indicate that cars eat the intersection in question have red lights.

I was crossing the intersection today with the walk sign  and saw a biker on the other side gesturing at me but looking to the side. I looked.     

A row of cars was nearing the intersection and after driving through  a green light, I guess, and the  biker was pointing me out to them. That there were multiple cars heading to the  crosswalk leads me to assume the light was green.

This isn’t the first time this has happened, just the first time I realized the walk light is worthless.

I'm a junkie

Starting last Friday, I began having sympathy for Karen Page, who sold former boyfriend Daredevil’s secret identity for a fix of heroin.

I ran out of gabapentin, the medicine I take for restless legs, and the next batch wasn’t coming until Monday.

I figured my legs would jump — they did. I was not ready for the other withdrawal symptoms, some of which I am still feeling.

• I didn’t sleep. Some of that was due to my unmedicated legs having a party, but mostly I wasn’t tired. 
• My stomach has rebelled against me. It was improving, but it  decided that was too easy. My meals this weekend have mostly been toast and applesauce.

I sympathize, but I would like it known that I’ll never sell out any superheroines.

Changes

 When I went to college, I vainly hoped I would change my stripes and have more  fun than I did in high school.

I did eventually have fun despite not changing.

One can almost divide my life into BC —before Claren, my first service dog and AD — after dogs.  They helped me start changing, though I am still not where I want to be.

Fame is helping me get there.

I was thinking of this  as I watched my niece accept awards at her prep school graduation.

She apparently wanted to change after high school, too, except she did.

Everything.

Except she remains one of the smartest and kindest people I know. And she still loves dogs and hockey.

I am jealous, well, not of hockey.

It’s not funny

I don’t know whether it’s age, increasing annoyance at my Friedreich’s ataxia, a combination or something else, but I find myself less amused by my little “adventures,” as Mom calls them.

Like today, when I found myself stuck on a driveway curb cut in the neighborhood.      

A mom was leaving the driveway and pulled me free.

I was glad, of course, but it left me wanting to cry..

Family

 In response to one of my recent blogs, my sister said, “We signed up for this.”

They did, more or less, but the 30-something they signed up with no longer exists. He has been replaced by a 50-something who can feel himself degrading.

We knew even then that Friedreich’s ataxia was progressive, so maybe I should just shut up. And it’s not like there’s another choice really. Hopefully.

But how is it fair to ask my family to deal with something I deal with only because I must? It isn’t. But I didn’t ask. They signed up for it.

I guess that is why I love my family.

'Comfort and convenience'

I do not think it will come as a surprise when I say I am not a big fan of insurance companies. The latest denial, for a power chair that was supposed to be more palatable to them explains why.

First, it says that because of my diagnosis, Friedreich's ataxia, several options I need are really just for “comfort and convenience.” They lost me right there. Absolutely nothing in my life involving Friedreich's ataxia or wheelchairs is about “comfort and convenience.” Sure, if doing my job is “comfort and convenience” or maybe sitting properly in my chair is.

It gets worse.

“We were told,” presumably by my doctor and physical therapist, “that you met the criteria” for these options. Apparently, the professionals who deal with me don’t know anything. The knowledgeable ones can make qualified decisions based only on paper. Wow.

I’m itching and I don’t know how to scratch

 My back itched the other night as I got in bed. I was going to write “in a place I can’t easily reach when it occurred to me, “What place on my back is easy to reach?”

I asked Mom to put some skin creme on it and, when that didn’t help, to scratch it please.

That didn’t help either, so I began using my pillow like a bear yes a tree trunk,  leaning against and scratching.

That didn’t work either, so I started contorting my body to try to reach the itch.

I stopped not because it worked but because I got worried I was going to roll off the bed with all my contortions. Sure, dying would have stopped the itch but probably not worth it, I decided.

All this happened with the sleep mask perched atop my head.      

I decided to rely on television to take my mind off the itch, which seemed to be working until my leg started to jump. My left leg.

I shut off the TV and read, which usually works. Not this time.

I tried sitting up in bed, which also usually works. Not this time. Plus the tubing for the mask got hooked on my pillow and started pulling me back, so I laid back down. On the tubing, so more contorting to get it out from under me. 

My back still itched, remember.

I put the mask on, hoping that might stop the restless leg. Nope.

I read some more, took off the mask and sat up, and read again.

Finally, after 2, I fell asleep.

My itch had stopped at some point, but I don’t recommend this post as a way to stop an itchy back

In case you’re wondering, the itchy spot was just above my left shoulder blade.

Fra-Gee-Lay

 The “soft glow of electric sex” illuminates the keyboard as I write this and most blogs these days.

But relying on light from the leg lamp from A Christmas Story is not my only tie to that awesome icon.

In the movie, Ralphie’s dad mispronounces the label on the lamp’s mailing crate: Fra-Gee-Lay.

I too am Fra-Gee-Lay lately.

I’ll be fine, happy even, one minute. The next, I want to cry.  

I have no idea why.

Maybe if my leg lamp was lifesize.

No comparison

 Gram was like no other (well, except Mom).

I remember when I fell and put my head through the glass door at home, she tried to catch me. An little 80–something  catching an albeit little 25-year-old. As I recall I ducked out of the way. She then made light of the fall, which I was not in the mood for.

She was great.

But she had one flaw that annoyed me no end. Still does, in fact.

She would compare our situations, ignoring that one of us was 90, one 30.

All the annoyance came rushing back the other day when I asked my doctor if either of the specialists she recommended had experience with people in chairs.

Yes, the elderly, she replied.

IT’S NOT THE SAME.

Not so good

 I wore the sleep mask for 9.4 hours last night.

Awesome, you say.

Except for two things.

1. It belies what a crappy night I had, involving restless legs, waking up 15 minutes after falling asleep and more.
2. It more or less equals the amount of time I wore the whole rest of the week. And this was the week I saw my sleep doctor, who seemed confused when we told him that part of the problem is I can’t adjust the machine myself. Just twist the knob, he helpfully explained, forcing me to helpfully explain back, I can’t.

He rallied with some good advice I’ll try.

I hate my sleep machine.

Ron Burgundy kills me (almost literally)

Both Anchorman movies have always cracked me up.

I was watching the sequel one night, and my niece, who has the bedroom above mine, came done and asked her mother if I was OK. Apparently, I was laughing too hard.

Lord knows what she would have thought last night.

We were watching the original, and the rumble or the News Team discussion of it just set me off.

I started laughing crying, gasping, and then I couldn’t breathe.

I remember thinking, “OK, I can’t breathe. I need to calm down.”

But I couldn’t.

Then I thought “This is going to be a really dumb way to die.”

That only made me laugh harder.

I finally got in a breath or two.

I think it was my sister saying to me during the laughter, If we kill you, everyone is going to be really mad.

I don’t want to be a spider

 In my youth, I played a game called Dino Eggs on  the Commodore 64. You were a time traveler who had accidentally given dinosaurs measles. In the game you travel back again to capture eggs and baby dinosaurs and take them to the future to cure them.

You encounter various hazards, including an angry dino mom, but the one I have been thinking of is spiders.

If you are bitten by a spider, your health starts failing and unless you make it to the Time Warp, you devolve into a spider.

I too am devolving.

I can’t do too many things I could do a year ago.

I don’t think I’ll turn into a spider, though I bet Time Master Tim didn’t anticipate that either.

Say what?

I emailed a question to a woman who I have dealt with a lot on email but never met.  She replies. “Give me a buzz.”

Ugh, 

But I have had good luck with a captioning app recently, so I was confident, maybe cocky even.

I called her, and sure enough the app worked well.

Here is the transcript:

“Who's  that?  I'm having a hard time understanding you.  I'll have to maybe have you go  to voicemail and then we can connect.  Thanks.  (Disconnected)”

Captioning apps do not work the other way, and nothing works when your voice sounds as if you have a mouthful of dirt.

I emailed again.  Friedreich's ataxia is so awesome.

Not independence exactly

My sister tapped me on the shoulder as I was eating breakfast: I’ll be outside so call me if you need anything.

A little while later, Mom stopped in: I’m just outside so call me if you want me to use the lift to get on the toilet.

I didn’t call either.

It wasn’t a desire for independence exactly. It wasn’t that a I didn’t want to bother them either.

I just wanted to use the toilet when I wanted to, which does sound like independence.

The difference is if I had butler at my beck and call, I would have taken advantage. One could argue that in Mom and my sister, I do have butlers.

I don’t see it that way.

I transferred fine. Going back to my chair my legs buckled.

Fortunately, Fame barked, Mom walked in and got my sister.

Oh,damn it all.

Kidney-er

In the supercool movie Tombstone, people refer to Doc Holliday as “lunger” because he has tuberculosis. By that logic, I guess we need to start calling Fame “kidney-er” because she has kidney disease.

That’s what an ultrasound this week showed.

I am scared her service dog group is going to make me retire her, I hope not. Even ignoring the pandemic’s effect that has kept me home, I hardly ever go out. Retirement ill-suited Claren, my first service dog. I hope they trust me.

I also worry about paying for the new food and supplement she needs.

Mostly, though, I’m afraid for my wonderful companion.

Wyatt never Doc “lunger,”so I won’t use “kidney-er.” It doesn’t sound cool either.

I’m not passive-aggressive; I have Friedreich's ataxia

One of my nieces said recently that young people view thumb’s-up emojis as passive-aggressive when they don’t include text.

I use that emoji without text all the time.

I am sometimes accused of being passive-aggressive, usually by my sister but also, I think by a counselor. But my thumbs-up texts aren’t passive-aggressive  on purpose.

Two things to learn from this:

• Young people (except my housemates) are dumb.
•  Friedreich's ataxia continues to. Find new ways to screw me over.

Drinking fast

 My sister asked me recently why I gulp may water at the beginning of dinner.

I do. 

I take pills at dinner that I am supposed to take with eight ounces liquid, but I drink twice that at least. 

I told her it was because I don’t like water, so I drink it fast.

That is part of it. IL don't like it but know it is good for me.

Another reason is that I know I can choke soon a liquid if I drink fast or slow. I drink most of the water to eliminate the choking hazard for the moment.

Maybe I should have told her that first. She might not have mocked me as much as she did.

Denied again

Two Thursdays ago as I was getting in bed, I got an email from my rep at my wheelchair company. He was emailing to let me know that my new insurance company had denied my claim. He hadn’t read the denial, but we needed to set up a peer-to-peer review with my doctor within 10 days. Call him the next day, he said.

The next day we called but he wasn’t available. He did have a colleague forward me the denial. They authorized the chair but said there’s no documentation behind standing so they denied the stander feature of the chair and its accessories.

The Tuesday after the three-day weekend, the rep called and encouraged us to set up the peer-to-peer review, so we called the insurer, who told us the provider had to set up the review. We called the rep back and finally texted my physical therapist, who suggested the standing feature and knows about my wheelchair needs.

On Wednesday, a funding specialist emailed from my wheelchair provider that my doctor had to set up the review. I emailed back to explain my PT was the better one to review my wheelchair needs and was told only my doctor can do reviews. I still hadn’t gotten an official copy of the denial yet, so we called the insurer to get more time. They had no record of the denial.

I got my copy today.

Wow, do I hate insurance.

Trials and tribulations

 I am waiting to hear back about a yearlong trial of a drug called Elamipretide that my neurologist is conducting.

It would be a treatment for cardiac and vision issues associated with Friedreich’s ataxia. If it works.

I have both, so that would be a great treatment.

Elamipretide would not be a cure. 

The other trial I am interested in is a cure.  It’s the next step in the trial I did a few years ago. That drug replaces the frataxin I am missing. It also is a yearlong trial.

They’re having a problem, though: non-human mammal mortalty at high dosage, I believe is how the put it.  Yikes.

The trial is on hold for the moment, obviously.

The cure trial is appealing not just because it is a cure. It makes sense—giving me what I’m missing.

I don’t want the cure to kill me, though, so maybe I’ll try the treatment. If I get accepted.

Oh, shi ...

 Come on, legs, stand! I begged, pleaded and cursed this morning as I sat on the toilet.

For me, using the toilet is a multistep process. I:

1. Transfer to the toilet
2. Stand up to pull my pants
3. Take care of business
4. Use the bidet
5. Have Fane bark for my sister
6. Transfer back with her help after she pulls up my pants

My plea, between steps 1 and 2, didn’t work, and before I could ask Fame to bark, it was too late.

I am very fortunate to have my sister and Mom to help me clean up.

I cannot begin to tell you how unlucky I am to have Friedreich’s ataxia. They’re pretty unlucky, too.

Fried rice is hot

In the Permian Basin of Texas and New Mexico lives the at-risk dunes sagebrush lizard. It remains a point of contention between conservationists and energy companies, but eight or nine years ago the head of the U.S. Fish and Wildlife Service testified about the lizard and other issues before Congress. That gave rise to my favorite closed captioning error … until two weeks ago.

The dunes sagebrush wizard.

Google Chat topped it when I was meeting with someone at the Department for Aging and Rehabilitative Services to get help finding a good keyboard.

She asked my disability. I told her. She looked confused. Captions had rendered Friedreich’s ataxia as Fried Rice Sexy. Mom jumped in.

Dictation software probably won’t work.

Death mask or continence

I hesitate to say I am used to the bipap, or death mask as I prefer to call it. A night rarely goes by that I would not prefer to heave it onto the floor with a resounding crash — although if I tried I’d probably hurt myself, not it. 

I do, however, feel the benefits of regular use.

• I sleep better, waking up with more energy. 
• I sleep sounder, often not waking up in the middle of the night to use the urinal. It’s not a continence problem when I wake up in the morning either. 
• It seems to0 settle my restless legs. 

So the past few months,. I have been wearing it five to seven hours a night most weeknights, up to 11 hours a night on weekends.

Until last week.

In early December, my old insurer wouldn’t fill my expensive incontinence pill. They suddenly decided they didn’t cover it, though they did the previous several years.

It cost five times less at my current insurer, which I had already decided to switch to, and I wanted to see if it provided me that much help, so I decided to go off not till switching insurers in January.

I didn’t notice much fall-off after stopping the drug, but I decided to restart it last week.

But apparently, in addition to improved bladder control, it also causes one’s legs to jump.

I have trouble wearing the mask or sleeping amid jumpy legs.

Hence, I slept and wore the mask little last week.

Also hence, I am no longer taking the drug.

Part man, part monkey

In an effort to show a friend I live with the meanest sister in the world, I told a friend that my sister has taken to calling me Boots. This refers to Dora the Explorer’s monkey sidekick, who has similarly awesome taste in footwear.

It didn’t work.

“That’s adorable,” my friend replied. That’s an actual quote because we were texting.

Of course I didn’t want it to work. She’s great.

Just yesterday I found out my insurer denied my shower chair. I need a new one because I slip forward in my current one without the seatbelt, which I always wear.

I came back from a postwork walk to find her manually raising the front of the seat.

I guess I’ll be Boots.210

Thank you, Sid Meier’s Pirates

 My favorite computer game, Sid Meier’s Pirates, continues to pay dividends years after I first played it on the Commodore 64.  Lately, it has been helping me get up the driveway when my battery is running out, which these days is pretty much always.

Sailing west on the Spanish Main is slow going, at least in Pirates. The wind blows  west to east in the game, so you often need to sail into the wind, especially if you make your home in Barbados.

It’s still slow but tacking helps you sail into the wind. With the wind from the west, you sail on a diagonal, first north then south.

For my driveway, which is too  steep for my crappy chair and battery, I don’t head  straight up. I left or right and just a little up.

It too is slow, but it works.

Or not

 For Christmas, the Friedreich’s Ataxia Research Alliance sent me an ornament that is hanging above my desk. Actually, it was because I sent it a donation, I suppose.

It reads, “Together, we will cure FA! FARA”

Sadly, I no longer believe in a cure, for me at least.

On one of my last walks of 2021, I thought to myself, “Wow, if someone had told me a year ago the pandemic would still be around in the United States, I’d have been pretty surprised.” But then I thought, “If someone told me after my diagnosis 25 years ago there  isn’t even a treatment let alone a cure, I’d have been shocked.”

I remember talking to a genetics counselor after my diagnosis, and we decided that since my disease now had a name, they would know what to cure. 

Apparently not.