Wednesday, May 31, 2017

No Party Doll for Matty

Buddy Knox, really Sha Na Na, gave me the dream of having a party doll, but I am afraid that hearing aids will forever prevent me from achieving that goal.

I have a habit (bad if you believe my sophomore biology teacher who said hair was the dirtiest part of the body) of running my fingers through my hair. That's just one of the things your party doll is supposed to do.

But I always knock my hearing aids out from behind my ears and have to scurry off for help.

Maybe I just need to stop running my fingers through my own hair.

Sunday, May 28, 2017


The near-constant showers and coolness did mean I could not go for a bike ride, so I guess I should be OK with it. I'm not, though.

It's not that I didn't want to go for a ride. it's just so much more than popping on my trike and riding.

  • It takes at least a half-hour to just get me on and of the trike, even with the lift. 
  • It also takes two people.
  • I have to make doubly sure my bladder is totally empty to avoid ... well, you know. Maybe I should go riding in the rain.
  • I can't take Fame because I can't pick up anything.
It is also a holiday that wears on me, so maybe it is no surprise all I want to do is nap.

Wednesday, May 24, 2017


Every time I see a gray hair, I grow sad. Well, mine. I like seeing my oldest sister's gray head.

It's not that I think I don't look good in gray. I know I rock any look.

It's this: I greatly suspect I won't live to 90, so at 45, I have lived half my life. I don't care about that exactly. But I feel like most of my life has been lived with the equivalent of one hand tied behind my back.

Not knowing my clumsiness was a disability and wouldn't get better stole some years. A diagnosis but no treatment took more years.  And various issues related to FA or wheelchair life robbed me of a few more.

I use such words as stole, took and robbed, but no matter how you look at it, I am to blame. If I hadn't been worried or afraid, I doubt my gray would bother me.

Monday, May 22, 2017

Doors bad

I got a bit tangled up with Fame today, so we were slow going through the automatic door on the bathroom, and when I did make it through, the door closed on me.

It hit my chair in just the wrong spot and snapped a screw that holds the joystick on. So lucky!

I somehow made it back to my desk, then out to the van, into and out of the van and into the house with the joystick in my lap. Friends helped at work; Mom at home.

Now it is held on by duct tape, and I am waiting for a repair person tomorrow.

Saturday, May 20, 2017

No 911

The police did not come last night. This was good, just not entirely expected.

As I was settling in for some iZombie on Netflix, I tried to turn on my microphone via my watch. It could not connect, so I restarted my watch. Or tried to.

Underneath the slider button to turn off the watch is a  similar slider for 911. Guess which I watched myself slide?

Even worse, there was no way to cancel the call, although that might be on purpose. And even if you do hang up on 911, they call you back.  I learned that the first time  I called 911 by mistake.

Anyway, the operator came on and began asking for my address. I tried to tell her I didn't mean to call her, but she didn't understand. Finally, Mom explained, which the operator said was OK but I thought she might send the police to check.

Tuesday, May 16, 2017

What a half-day it was

My sister, I am sure, would say it is my own fault for going to work on a day I telework. It is just after four hours of not being able to connect, I had things to do.


Shortly after I got in, I went to the bathroom. I knocked my water bottle onto the floor. Luckily. it missed the toilet but it rolled around under the toilet. Gross. I'm not drinking out of that, I thought, but I'll just drink my juice then use that bottle for water. (Hint: It doesn't work.)

Next time I went to the bathroom, I removed my lanyard carefully because I know my hearing aids can easily get stuck in it. Not careful enough, apparently.

My right hearing aid came out from behind my ear. I was trying to fix it when it came out and fell in my sleeve. I lowered my arm and it tumbled out, bounced under the stall wall and landed under the foot of the stall's user. I didn't have a lot of time to waste -- what if he lowered his foot -- so I said, "I dropped my hearing aid under your foot," reached into the Forbidden Zone and grabbed it.

I then put it on my wheelchair cushion. Unfortunately, that is also where my lanyard was. I hooked my lanyard with a finger as I pulled my hand away from the cushion, and my hearing aid went somewhere.

It wasn't under me. I didn't see it in the next stall and was not about to ask the same occupant. (I wouldn't have asked another occupant either.) I didn't think it was in the toilet. I decided it must have gotten in my clothes, but I didn't see it.

I got back in my chair, started backing up, and just as I asked St. Anthony to "please come around," it appeared from under my chair. I can't believe I didn't run it over.

Later, in the restroom, I was rinsing out my juice bottle, and I managed to stick the faucet handle inside the bottle. I was trying to decide if it was too germaphobic to worry about drinking out of, when I dropped the top on the floor. I gave up then.

But the fates weren't done with Matty. I decided to eat  a cheese stick. I had a bite, then dropped the rest. Fame got an unexpected treat.

That also ignores the two mysterious cuts on my hand I only noticed because of blood on my jeans, phone feedback and a bang on the head.

Next time, I am calling in sick.

Sunday, May 14, 2017

I love the CW

That's kind of embarrassing to admit, I realize, when you are in your 46th year but whatever.

I watch it more than any other network, and while I watch the other networks mostly on Hulu, I watch CW shows live.

That was more out of necessity than anything else.

The CW app has the shows, but it has well-documented issues with captioning.

I learned of the problems when I  was trying to catch up on Arrow at the beginning of the season. You had to turn off captions before the ad break, then turn it back on once the ads were over. Otherwise, the show froze.

It got too hard to watch shows so I watched them live, except Arrow, which I just gave up on, because I missed the beginning episodes.

Surely, I figured, they'd fix it soon.

But they never did.

Finally, when I missed a Riverdale episode, I took to the web to find out what was up. There were plenty of negative reviews on the Amazon page for the app, but it was far from clear that the CW knew about it. So I left some feedback on the network site.

One week later, they issued an update that fixed the captioning.  YAY

Thursday, May 11, 2017

The real Captain Awesome

I try to bitter, but some days it is so dang hard.

The other day I got to work and pushed the button for the elevator. The door opened, and inside was a woman I see frequently in the mornings. She is not a co-worker; she just shares our building.

We don't know each other, except what floors the other works on. She is that woman to me. To her, I am something similar, or maybe Captain Awesome.

The elevator started to close before I reached it, so she rushed off the back wall and held it open.

Then she said, 2, right? Two is my floor. She is 5.

She knew I needed to unlock the 2 button with my ID, so I said I'll jut ride up with you and lowered my head as I struggled to get my badge out of the holder.

When I looked up at 5, she was waiting with her hand out of my ID. I handed it to her, she unlocked and pushed 2, wished me a good day and got off the elevator.

Tuesday, May 9, 2017

Close call

I am sure those little metal walls on the edges of a sidewalk have names, but whatever. I am not a fan.

I went for a walk at lunch, and because I wasn't paying attention, drove of the sidewalk. I couldn't get back on the sidewalk  because of one of those walls.

With my speed up, I got back on the sidewalk, but then lurched all the way across the sidewalk and stopped with one wheel off the curb.

Luckily, a security guard saw me and helped pull me back safely.

Sunday, May 7, 2017

I procrastinate

My desk at work gets littered with plastic Gatorade bottles because the recycling is not real close and I don't want  to throw them away. So I let them pile up till I have to do something. Then I recycle.

I find myself doing that more and more: putting something off because it isn't easy.

But it doesn't get easier, or if it does, it is only because I shift the hardship to someone else.

Wednesday, May 3, 2017

Up with Matty

Mom, Dad and I went to NIH to talk to a class of future genetics counselors last night. It went pretty well. Mom was worried I'd be too gloomy, I think, because what I wanted to tel them was that the FA diagnosis did not help me at all.

Here is what I said (more or less. I didn't read it so it's not exact):

Mom and Don were talking about the advances and how you no longer have to make diagnoses wholly on symptoms. I kind of have a different view. I learned 20 years ago that I have FA, and despite the hard work by doctors since then, if anything the diagnosis hasn't helped me. I still have a degenerative disease that continues to degenerate. I know at least vaguely what the future of disease is. I can no longer say, “Maybe it won't get worse,” because FA does get worse.
One doctor — not from NIH — told me shortly after the diagnosis that they’d have a treatment within 5 years. Instead, I am trying to figure out how long I can work, how unfair it is to make my sister care for me when my parents are gone. 
But then again maybe they will cure it tomorrow.
I also told them they need to make sure the patients have a support network because no matter how strong and how hard it is to accept help, no one can do this alone.

I could have been much more gloomy.

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