Tuesday, October 30, 2012

Swimming is fun

My swimming teacher had some words for me about my post about how I don't like how I look swimming. She was not a fan of that post.

She pointed out that I have come awful far in just a few years -- from not swimming at all to swimming mostly on my own, albeit gangly, for nearly a quarter-mile every Sunday.

I've even surprised her, she said. She did not think I'd ever swim.

So who cares how I look. I enjoy it. I feel good afterward. My dream of quashing Michael Phelps will have to remain a dream ... unless I see him on the street and run him over in my new kickass chair.

Saturday, October 27, 2012

My new ride

The coolest feature of my new Invacare wheelchair is actually not part of the chair at all. It is a handy accessory that plugs into the battery port and offers both a headlight and a USB port.

The wheelchair guy threw it in because it is cool and he uses one. He probably was feeling generous because my chair cost more than a new low-end Honda Civic. I am not paying for it all, just saying -- wheelchairs aren't cheap.

I never felt particularly bad in my old chair, so it is astonishing how good I feel in this one. It has a special back with lots of curves and lateral supports and a curved cushion. They both make me sit up so straight. I love it. A friend at work said I look so much better.

It also has a real chest restraint that is more comfy than the Batman belt.

And the swing-away arm actually swings away! It sits almost next to the arm rest when swung away. Even straight, it is still behind my knees.

The only issue is height. I am a lot taller. I an no longer sit at the dining room table to eat. I need to use a tray. That's fine. Less cool is that I no longer fit under my sink. I can get pretty close but no longer all the way under.

All in all, though, I am happy.

Thursday, October 25, 2012

Pissed off

I had planned to spend this post talking about my cool new wheelchair, and it is cool. I got an accessory with it that has both a headlight and a USB port.

But I had a lot of issues today.

First, I dropped my mouse into Claren's water bowl. This is the second one I've dropped. It seemed to work fine mostly, but then later it died. Its death is significant later on, so remember it.

Then I went out at lunch for a walk. Claren pooped, and I thought I heard someone say, "I'll get that." But I looked around and saw no one. Then this woman walked up with a dog. She said she is a dog walker so she picks up poop all day. And she picked it up and went her way.

I came back and started to eat lunch. In the middle, I had to go to the bathroom. No problem, I thought. I stood at the toilet and proceeded to pee all over the front of my pants. Lovely.

I went back to my office, got a towel I keep there for Claren, draped it over my legs and was going to just suck it up.

But my mouse died. And it is to hard to use the Mouse Keys for more than a few minutes. So I called Mom and she came and got me. I got home. Mom helped me change and then I began to work from home.

It all turned out fine, I guess, but it's really annoying.

Monday, October 22, 2012

Let down

I tried, I really did. But my ankles failed me, time and again.

I was on the floor in the bathroom at work. I had slipped to the ground, was not hurt at all, had plenty of bars to grab. But I could not get up. Every time I pulled myself up, my ankles did not bend to keep my feet on the ground.

I tried so hard: My arms ached, my mouth was dry, my heart pounded. But I could not get up.

Finally, someone came in and I asked him to help me. He did.

Then I went back to work.

I tried so hard and I failed.

Saturday, October 20, 2012

Wii all night!

I am putting my niece and nephew to bed tonight -- they're parents and Mom and Dad are going out.

This is a first for me.

I have watched them before and been in the house alone with them although usually I am asleep during afternoon naps  when that happens.

Also, it is never really clear who is baby-sitting who when that happens. Last time, my sister went out, she told her kids  I was in my room. I yelled out, "I am losing my eyes but let me know if you need anything."

My niece, 9 going on 42, hollered back, "OK, you too."

I wish I felt better about it. I am not worried or anything. Claren is just feeling puny because she had some surgery to drain an aural hematoma yesterday, and she makes me feel less than tiptop.

But we're allowed to stay up till 10!

Thursday, October 18, 2012

I'm never moving to the West Coast

I have been through one earthquake that I know of. I am counting on there being another during my life.

Work isn't so sure. They scheduled a Shake-Out drill today and made a point to give us chair users special instructions: Stay in your chair, get away from windows, bend over if possible, cover your head and hold on.

I wasn't sure how to cover my head and hold on, but as I told one of the supervisors that asked if I needed help, I am a pro at duck and cover. So I was all set for the drill.

I waited and waited. Then someone stopped by my office and asked how I liked the drill.

I totally didn't hear the alarm. I am doomed.

Tuesday, October 16, 2012

Pushing a purse

Nothing like a ride on the subway to put me in a crap mood.

It was quite unexpected.

I got on a train with seats available and where no one was standing .. except at the door I went in.

There at least 10 people stood around, only grudgingly letting me on.

At West Falls Church, I got off the train and called the elevator. I was the first one on. Five or six others got on, including a kid who did not need to use the elevator and a woman with a big purse.

The purse started to nudge my joystick and I started jerking. I pushed the purse away, and the woman looked at me as if I had felt her up.

Then everyone hurried off the elevator, leaving the door to close on me.

Fun fun fun.

Sunday, October 14, 2012

St. Anthony knows how to answer a prayer

St. Anthony is starting to make the others I pray to look bad.

I pray to Matthew, Edward, Mary, Jesus, God, everyone to get better, to not get worse, to not fall.

I fall; I get worse; no cure comes.

I ask St. Anthony to help me find something, and it turns up.

Like today.

I went for a walk on the bike trail to see how long my weekly trike ride is (my chair keeps track of mileage). While walking, it occurred to me to look for an ear piece that fell off my glasses yesterday during the ride. I knew the general area that I lost it after all.

I scoured the area as I walked up the trail. I gave it up for lost, but as I turned I asked St. Anthony to "please come around; something is lost that must be found." Before I went a few feet, I saw the ear piece.

God could learn a few lessons if you ask me.

Thursday, October 11, 2012

Still alive

No one who has Friedreich's ataxia can really say he is lucky.

You have struck out from the very moment of conception, managing to get the bad gene from both your mother and your father.

But I am lucky. Family and friends, sure. A good job, oh yeah. 

Actually, though, tonight I am thinking that I am lucky to be sitting at my computer instead of lying in a hospital.

I went for a walk tonight without Mom, so I was cruising along in the dark with my lights on. I was getting ready to cross a street when a car on the street I was on turned on its lights. Maybe that threw me. All I know is that I rammed the opposite curb with my chair. Actually, I hit a sewer opening in the curb and my chair leaned perilously close to tipping over. Somehow it didn't. 

So, I just came home and tried not to throw up at how close I came to hurting myself.

Tuesday, October 9, 2012

Nothing to see here

My friend and co-worker who uses a wheelchair was back at work today.

She stopped by to tell me that somebody had told her about my fall last week when she wasn't there.

As I told her, the fall was nothing, the real news is it took people at work a year to see me fall. You'll notice I didn't say "a year to fall at work." I have fallen before at work ... in the bathroom. So there.

Sunday, October 7, 2012

Oh well

I have been swimming for a little more than three years.

I know I am no Michael Phelps, but I assume that I look somewhat cool in the water. Make that "assumed."

My teacher had her iPad and she taped me doing the regular backstroke. This stroke always feels moderately good, so I like doing it and figured I looked sort of normal doing it. Notice I used the passt tense.

I look as if I am drowning in the ideo. My legs are deadweight, floating just under the surface. And the strokes are not controlled and look pathetic.

Thursday, October 4, 2012

No pee! But ...

Today was the first day this week that the urinator did not soil the toilet seat of the wheelchair toilet!

But the day also saw my first tumble onto the floor under my desk at work, into Claren's water bowl. So, I am not sure whether it was a good day, despite it pee-freeness.

I was getting ready to go to a meeting when I leaned forward to grab something on my desk.

I almost immediately realized my seat belt was not buckled. I don't know why. Maybe I forgot to do it when I left the bathroom although it seems unlikely. Maybe it just failed, which given the history of this POS wheelchair seems likely.

I did not have the strength or balance to lean back once I started leaning forward, so I let myself fall to my desk, hoping I could catch myself there. I managed to put my head on my desk but only for a few seconds. Then I fell to the floor and put my arm in Claren's water bowl.

I wasn't hurt and quickly moved to stand. A co-worker happened by at that point, and saw me.  I asked her to grab a co-worker to help me. She did. But she also told like everyone in the office. Another guy came to help. My boss came. An HR woman stopped by several times to make sure I was OK.

OK, yes. Humiliated, that, too.

Tuesday, October 2, 2012

Don't start

Have you ever really felt like crying -- maybe even started to tear up -- but were afraid that if you started, you would never stop?

It was not a great day, shall we say?

Shortly after I got to work, ants started dancing across the bottoms of my feet. OK, maybe they weren't real ants but my legs were still jumping all over the place in an effort to dislodge the ants. I took some Advil, which normally helps my restless legs, but it was about two hours before they settled down.

Then I was OK for a few hours, ignoring a normally hectic schedule.

I went to the bathroom at some point to find someone peed all over the toilet seat again. This is not unique to my workplace either. It happened at my last job, too. Apparently, adult guys choose to treat work restrooms with no respect. And how do you leave a note that doesn't sound snarky? I don't think it is possible because you are asking grown-ups not to behave like toddlers.

About 2, I got a phone call and backed up my chair to see the caption screen on the phone, and my keyboard tray snagged on my pants and pulled completely out. So it crashed to the floor, followed by my laptop. A co-worker tried to help, but she was telling me to leave everything, which was not helpful because I was holding my laptop, and I wasn't about to leave it hanging by the cords.

It was just so humiliating.

Finally, I decided I really can't go on our work retreat next week because it would require me to get up at like 5, and I can't do that.

So now you see why I might never stop crying.

Monday, October 1, 2012

Don't fear the urinal, please

One of the gents in my office apparently eschews the urinal.

Hey, that's cool. Different strokes for different folks and all that.

But ... said eschewer also does not care to raise the toilet seat when he pees, and that is not cool.

I went to the bathroom today, saw liquid on the toilet seat so I went back to my office, got a Clorox wipe out of my desk, went back to the bathroom and cleaned the toilet.

Then I used the toilet and things were fine. I was back in my chair with the wipe in my left hand. I bent to my left to flush lost my balance, the wipe and hand were headed for the toilet. I jerked to the right, which saved my hand from a watery grave, but my face and glasses smushed against the stall wall and the wipe splashed water on my face.

SO ...

I had to go to the optometrist to straighten my glasses and I am now waiting for some crazy flesh-eating bacteria on my face.   Fun afternoon.

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