Sunday, July 30, 2017

I hate sidewalks

I don't like sidewalks, but I have been using them recently to see whether my bias is legitimate. It totally is.

Here are just a few points:
  • Sidewalks are ill-kept. It is totally OK for sidewalks to have big cracks and bumps.
  • Their poor condition makes them quite uncomfortable for chairs. You ride just like the milkman -- whoopity whoopity whoopity. (I tried to find a link to explain this nursery rhyme, but apparently the milkman has been written out. sigh.)
  • It becomes dangerous, not just uncomfortable if a chair gets caught on a bump.
  • Curb cuts are kind of a joke. Many still require you to go up or down big bumps.
  • Driveways are equally laughable. Good ones are fine, but the sides to plenty are equivalent to big hills on roller coasters.
  • When I am walking the same way as the traffic, Fame is right next to thee street, so I have to have her switch sides, which is easy enough, but it puts me outside my comfort zone.
the end result: I am taking it to  the streets.

Tuesday, July 25, 2017

Bloody bloodsuckers

When people consider life in a chair, they probably think of big questions: how will I get from A to B, how will I use the toilet? Few people probably think of mosquito bites.

They're a big problem and have kept me up for hours the last few nights. Last night I woke my sister up to come put a wet washcloth on a bite on my left leg matching the one on my right leg.

Generally, what happens is they itch, then they set of my restless legs, then I take Advil, then I fight off tears because the Advil doesn't work. Cortisone doesn't either.

It is my luck that the one group of females that find me irresistible are mosquitoes.

Saturday, July 22, 2017

Are you there, God? It's me, Matty

God is not my favorite. I know that my problem is related to genes, not deities, but part of me (sometimes a large part) can't get past the idea that God knew Friedreich's ataxia was in my genes  and didn't do anything to prevent it.

That is a somewhat simplistic sentence about me, but the upshot its I don't usually pray to God.

I talk to others in Heaven -- ask the saints, his mom, my relatives and friends for help and to talk to the big guy.

Today, though, I prayed to God. I told him I can't take anymore. He didn't answer, apparently confident I can take more.

Friday, July 21, 2017

Heartening, I guess

I went back to the cardiologist today to see if my new medicine was lowering my heart rate.

Something was.

Everything was totally normal.

The nurse practitioner suggested that the doctor was the cause of the elevated heart rate. She was good and funny. Of course, she might be right.

I am not scared of my cardiologist; I like him a lot. But I wonder if something set me off.

I also wonder how I am not going to worry about my heart from here on out.

Wednesday, July 19, 2017

External Affairs saves the day

When I first got outside at lunch, I thought, "Wow, is it hot."

Once I was out for a minute, I said to Fame, "I know you probably are too warm, but this is my kind of weather, especially in the shade."

I still went for a little walk. I knew Fame had to poop.

She did, and I bent over to get it, which I did. I had trouble get back up straight, though, and  someone forgot the meaning of brace -- a command we practice nightly where I put a hand on her back and push myself up. The upshot of that was some poop fell into a fold of my jeans, but it got worse.

I had to go in the grass to pick up after Fame, so to avoid getting stuck by backing out, I made a loop in the grass to return to the sidewalk. Well, in theory. In practice, I got stuck. I was in the shade, though.

I called a friend, but he is a bigwig and was downtown at a meeting. So I texted another friend. She said she'd come with help.

But my bigwig friend had called someone else -- friend 3 -- to say I was stuck.

As I was waiting for friend 2, friend 3 and two other friends came to help. Then friend 2 and friend 6 showed up,

Five people came outside to help me on a day that might be called warm-ish, and one worked the phones for me.

I work with good people.

Sunday, July 16, 2017


After she finished pretending to throw up, my sister started calling me a snake-oil salesman.

What on earth could I have done to set her off, you wonder.

I'm happy at work.

I was telling a friend I was unhappy, and she said I was usually the happiest person who comes through her doors.

I told my sister this, creating all manner of angst.

Everyone tells me that I should act happy. But it takes energy to turn that frown upside-down. I don't always have energy left when I get home.

Thursday, July 13, 2017


This is what happens when you don't worry.

You have no preparation for the crap news that Friedreich's ataxia invariably brings.

I haven't worried about my heart for years -- even less since multiple doctors said I was unlikely to develop the heart problems associated with FA at this stage.

Unlikely maybe, but not impossible as I learned this morning.

The EKG they took showed my heart racing at 163 beats per minute. I noticed it going a little faster on the way in but attributed it to nervousness and didn't worry about it. Just the opposite actually, I laughingly thought to myself that I was in the right place for a crazy heartbeat.

Now I am on a beta blocker, starting at a low dose to try to keep it from lowering my already low blood pressure.

Sure, I'd still be on it if I had worried, but at least I'd be prepared or have expected this.

As it is, it is all I can do not to crawl into bed, curl into a ball and not get up till everything is better.

Sunday, July 9, 2017


Looking back, I often make choices that lead to poor results. I don't think they are bad choices, though.

Consider what I have to work with.

Yes, I do fall sometimes when I transfer, but that's the price I pay for not staying in bed all day and for not calling for people to help me with every transfer.

Yes, my wheelchair sometimes get stuck in the grass, and that's because I am in places I shouldn't be. I get myself in those places because I don't want to call someone to do every little thing I need.

I guess what I am saying is my choices may look bad, but I am not sure I'd make a different choice if I could go back in time.

Friday, July 7, 2017


My sister suggested that I play hooky today and go with her and my nephew to National Harbor.

I declined. I like going to work, especially to the office.

While she likes to attribute this to my over-developed sense of duty, which I would just call doing my job, the reality has little to do with work. I go to the office because it is my regular opportunity to enjoy interaction with people I am not related to.

I got to the office today, logged on, and my bladder leaked.

I had to go home and change, and just teleworked the rest of the day.

Tuesday, July 4, 2017

Dependence Day

I am not feeling very Fourth of July-y.

I can do some things on my own, like read, write and watch TV. But so much of what I do has severe limits on it.

I can't do so much without a lot of help. And I am not talking about walking or things like that. I can't really go places unless I get a ride. I can't go on a vacation because I'd need someone to go with me and help me do everything, and I am not sure I can afford that.

Why can I not see past the can'ts?

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