Thursday, May 26, 2016

It stopped raining, crap

I have been fervently hoping the rainy May would end, and it finally did. I'm pretty miserable. In no order:

  • The coQ10 does seem to be giving me more energy -- the first three days of the week, I got  a total of about 12 hours of uninterrupted sleep, and I was not semi-comatose. Unfortunately, I think it was why my sleep was interrupted. I also think it was why my legs started jumping during the day. I stopped taking it and things improved.
  • With the nice weather came allergies.
  • One night we were looking through Mom's photo albums. Not that it isn't fun to mom certain siblings' clothes and hairstyles, but what hit me were the photos of me standing. How naive of me to think I would get worse?
Plus, this is the worst time of year for me. I love summer, and Memorial Day reminds me of what I will never be able to do anymore.

Thursday, May 19, 2016

The deuce, you say?

It finally happened. Despite all the signs saying the wheelchair stall was for people with disabilities, I came in yesterday afternoon to find someone not-at-all-disabled in there.

Why? The other stalls weren't filled. The perpetrator wasn't even that big. What kind of person does that?

"A [sounds like deuce]," a friend said. She then provided further evidence that she is really my "work sister" by demanding the deuce's name. I honestly don't know his name, so then she started grilling me on his looks. We didn't get too far there either.

I stayed in the bathroom till he came out, and it  wasn't anyone I'd seen using the stall before.

"Sorry about that," he said, but I suspect he meant was "Sorry I got caught."

I am sure he didn't notice that I didn't acknowledge his apology. I needed to go the bathroom.

Monday, May 16, 2016


Good news, ear horns cost as little as $30. Insurance would cover that. Even an antique collector's item at $500 would come in under my insurer's threshold.

The problem is: The audiologist recommended hearing aids and accessories that would cost from $6,000 to $9,000. Insurance coves $1,000.


Saturday, May 14, 2016

My brassiere

I don't need an audiologist to tell me I can't hear. I did  go to one Thursday and will write about that shortly. But I know I hear poorly.

Nevertheless, I am 99  percent sure that a physical therapist I also saw Thursday said part of my chair is acting like an underwire bra.

After confirming what such a bra does from my sister -- whose response when  I asked her what they did was "REALLY?" -- I am pretty sure the PT did say this.

She was talking about these lateral supports on my chair and said they are pushing up under my arms and acting like an underwire bra.r

She had lots of good ideas so I am eager to work with her, although I hesitate to guess what undergarment is next.

Tuesday, May 10, 2016

Almost 45 but no adult

As I sat outside playing with Fame on Sunday while my sister and brother-in-law cleaned the porches, I had a thought. Later, as I mulled whether a photo with Summer Glau at next month's Awesome Con would be money well spent, the same thought struck me again. I should not even pretend to be an adult.

The only bills I pay are credit cards and medical bills. Yes, I give my sister money for the mortgage and utilities and stuff each month, but I don't pay them.

I go to work, but the only other responsibility is Fame. Well, that and don't die from FA, which is sort of major.

By the way, I am leaning toward a Summer photo.

Saturday, May 7, 2016

CHOPping away at FA

I had a good, if tiring, visit to CHOP on Thursday for my annual FA check.

I am going to revisit an old friend to try to improve met energy: co-enzyme Q10. The doctor had other advice if that doesn't work, too, though he had less than ringing endorsements. If they do work, he said, it's on energy.

He said a new medicine might help my bladder and recommended one. He also suggested I follow up with a speech therapist, though he warned against letting them do a barium swallow test. They just tell you that you are in fact having swallow issues.

I am definitely going to go to an audiologist this  year, I told him.

I was surprised by the treatment news. Several are due out in a year and a half, including a diet that sounds odd but has some science behind it. It involves eating a lot of fat, so you'd be like Homer Simpson, my niece said. Added my nephew, "Homer Simpson in a wheelchair."

The biggest surprise was the drug that is a few years away that not only stops the ataxia but reverses it. WHAT

Tuesday, May 3, 2016

The mean streets of Falls Church

My wheelchair broke Sunday night. One of front wheels broke apart and I was running on a rim.

It would be fair to blame my PoS  wheelchair. But Falls Church deserves an equal share of the blame.

My neighborhood is less than a mile in diameter. In the past 10 years, eight brand new houses have been built. It has seen at least five teardown-and-rebuild-bigger projects and two houses with significant additions. There have also been 18 one-to-two projects in which one normal house is torn down and two thin houses are built.

Despite all the heavy machinery needed and despite the many times the roads have been torn ip for utilities, the city  has never adequately repaired the roads. Instead, it just patches the holes.

To ride on the roads in a wheelchair  is a bumpy experience at best. Sunday, I hit a divot that I thought at the time just redirected my chair from where I wanted to go. I am certain now that it broke the wheel.

I am no  taxman, but I would think all that new construction would be worth a new road. Apparently not.

Sunday, May 1, 2016

George Washington prayed here and so did I

It was a tight fit into the  George Washington pew at Christ Church yesterday for the wedding of   a friend and regular Bitter reader. I made it with some help, but I may have scraped a little paint off the pew in so doing. Let's hope it wasn't historical paint.

It was a fun wedding. George Washington even stopped by and posed for pictures.

Fame was well-behaved and of course a big hit. During the dinner inside, this gal asked if she could take a picture of Fame. Sure, I said. She then got down on the floor in her little black dress, reclined on the floor next to Fame and took a selfie. She did warn me she was a little obsessed with dogs. And I think she was the groom's (my friend's) sister-in-law so no problem. Fame stayed in a down.

Plus, Fame is so cute how could you not be obsessed. I fed her on the grass near where we are in the picture. A friend picked up the bowl afterward. I told her she didn't have to because Fame would get it, so she put it back down for Fame to get. Fame proceeded to pick up three leaves, two pine cones, basically anything but the bowl. SIGH

I had asked beforehand who I'd know and was told another good friend. I asked her to be my helper if needed. She readily agreed and was a huge help. I think the groom went out of his way to make sure things were accessible, too.

My friend shares her name with my little sister, and she was as helpful as my sister, and she didn't make fun of me.  (NOTE: if I had an editor, she'd kill that last clause; it helps me out not at all. My sister will think  I am being a jerk; my friend may decide to make fun of me. Oh well.)

Great day.

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