Thursday, June 28, 2012

Faster in my mind

In This is Spinal Tap, the band had their amps go to 11 because it was one louder than 10.

I have been having a Spinal Tap moment lately with my wheelchair.

A few days ago, I got bored in a meeting because I couldn't hear anything, so I started playing with my wheelchair settings.

I found one that let me switch it to the metric system, but I could not get it to switch ... at least so I thought.

The next few days, I have noticed my wheelchair is going faster -- not really but the speedometer says so.

I finally figured out that I did change measurement system, and the speedometer was showing kmph not mph.

It still felt faster.

Tuesday, June 26, 2012

Tarry night

To get from the actual subway station to the "Kiss and Ride" lot where Dad picks me up, I have to go down one curb cut, up another and down a third.

The only other option would be to leave the station completely and have Dad meet me on the street.

Not really much of an option, but I should have considered it today.

Each of the curb cuts was 75% blocked off, and a strip of new asphalt ran the length of each.

I now have asphalt all over my wheels. Nice.

Sunday, June 24, 2012

Remembering it all

I swam four lengths of the big outdoor pool mostly on my own yesterday. My teacher just barely held my head and sometimes -- as the snouts full of water I swallowed will attest -- not at all.

All told, I swam a quarter mile.

But those four lengths without a vest, or a fat suit, were  so cool ...and so hard.

Nothing about floating comes naturally to me. My teacher says it is because I have no body fat. Whatever, it is just hard.

Remembering everything I need to do to keep afloat taxes my brain -- I need to relax, keep my belly up, trust my hips forward, don't jerk, oh yeah, and breathe.

I cannot remember to breathe. My teacher has to remind me.

I suppose this is similar to life with FA. You don't just take a shower: You transfer to a shower chair, buckle yourself in, line yourself up under the shower-head, grab the soap, which is in a stocking to keep it from getting away from you, blah, blah, blah.

I would not mind having things easy, just once.

Thursday, June 21, 2012

Handicapped parking spots or jackass drop spot?

Apparently, all these years I have been operating under the wrong impression about handicapped parking spots.

I have long thought that they were areas to park in for people who have some kind of mobility issue.

Turns out they are just spots for jackasses to leave their shopping carts.

I learned this at Target today. We had to go to a second spot because a cart was blocking the better spot. When we left, a second cart had appeared.


Wednesday, June 20, 2012

Something else to worry about

Apparently, I no longer need to worry about urological disorders. 

This does not, of course, mean I will stop worrying. Something bad would happen if I did, I am sure.

It just means that my urologist gave my a clean bill of health. This was after she told me that she described FA to the nurse as something you don't want to have. Amen to that!

She said:
  • The kidney stone is tiny and no big deal. 
  • My bladder is a real hoss. It holds a ton and empties well.
  • My prostate is not that much bigger than usual.
So yay!

But I heard from my primary care doctor. My cholesterol is not too groovy. My bad cholesterol is not that bad, but my good is pretty poor.

It would be nice to get back to just worrying about the monstrously devastating disease I have.

Tuesday, June 19, 2012

Come on, Bruce, caption this

I read this story and I really want to watch the video. I tried, though, and could not follow it at all. I wonder if it will ever get captioned? I am skeptical.

Sunday, June 17, 2012

In the water outside

I went swimming in an outdoor pool for the first time ever yesterday. It was awesome.

The last time I was in an outdoor pool was about seven years ago on a family vacation, and I have been swimming for just three years.

We are on a break from classes, but my teacher offered to meet me at her pool and help me. How could I say no?

Mom and I thought it might be a fast lesson because it wasn't super-warm out, but after the initial jolt getting into the pool -- made worst because I got in via a lift, which is real cool but dips you in SLOWLY -- it was so comfortable under the sun.

I did  a lot of work, too. I learned the backstroke where you swing your arms backward -- like you see in the Olympis. Just like that, really.

The pool was longer than I am used to, and wow, did I feel it. But I made it.

The only problem was the sun made it hard to stare into the sky when I was on my back, even with tinted goggled borrowed from my teacher. I wanted to close my eyes but then I lost all sense of where I was going.

Oh well, still awesome.

Thursday, June 14, 2012

Healthy but still an idiot

The urologist called today to say the test was all fine.

Mom (who she calls because I can't hear) said that the tech said there was a stone or something in my left kidney.

She said there probably was, but it was quite small and was in an unobtrusive spot.


I learned all this after working late because I accidentally deleted a speech I needed.

Wednesday, June 13, 2012

Yes, Matt, you are an idiot

There are, I am certain, sillier questions than the one I asked the medical technician doing my bladder scan today.

Keep in mind she was a tech not my doctor, who will go over the test with me when I see her next week. (Not that I am saying techs aren't smart, but they don't always have the whole story.)

I asked her if everything looked OK.

Well, you have a stone or something in your left kidney, but you have no pain so I am not sure what we're going to do about that, she began. Other than that, everything's normal, she continued.

OH FUC ...

My prostate is too big, and I have something in a kidney.

I don't want a stone because I know they really hurt. But that might be better than the vague something. I don't know whether that something is like lint on the scanner or a tumor.  Mom says it is not a tumor.

She also made me promise not to google "kidney stone."

Now, I have a week to worry.

Tuesday, June 12, 2012

Don't try this with FA

I needed some lip balm, so I asked my sister to grab me some when she was at the store.

Maybe because she is used to buying lip balm for little kids, she came home with three cherry-flavored tubes.

At first, I figured what the heck, beggars can't be choosers, so I used it and my lips smelled like a little kid's.

Then I noticed that it turned my lips a brighter red. Whatever. I'm done with luscious lips.

But then Mom asked me if I had a rash because I can't keep the lip balm just on my lips and a little red outside my lip looked rashy.

Now I am using some clear lip balm Mom bought me.

Sunday, June 10, 2012

Back to the pool

I planned to write about how the fates seemed to be working to keep me from exercising because the brake on  my trike locked up right as I was trying to leave in a ride.

But then I found out swimming was not over for the session -- we had a class today. I made it and am gloriously exhausted now. Even better, the session did end today but the teacher offered to meet me at the pool on the coming weekends to keep me in the water!

Friday, June 8, 2012

I need elevators

The week started off with the elevator to the subway stop at work out of order.

At least for two days, it was inaccessible  to folks in chairs.

I am lucky. I can get rides. But others have to ride to another station or take a shuttle bus, which takes ridiculously long, unless the process has much improved.

It's kind of mind-boggling to think of a subway station closed to an entire segment of the population, and it made my other elevator encounters this week quite distasteful.

Yesterday, I got on a train car that let me off just before the elevator. I saw a handful of folks with no apparent disability board the elevator, just to get them up a little quicker.

I managed to get on but then a bunch of other people got on the elevator. I just wanted to scream: Is your time really so important?

Today at the elevator, two women and I were waiting. They got on first without even a glance at me.

I wonder if they could close the subway to selfish people?

Wednesday, June 6, 2012

Healthy or at least alive

My doctor pronounced me "amazingly healthy" today, even after she bent me over the exam table, put a finger where no finger should go and told me my prostate is bigger than normal.

She has been treating me for 12 years and seen a lot of my weird injuries, so I think mostly she is just impressed I am not dead.

I mean I have a really crappy disability, which was why she had to help me bend over the table. I stayed in my chair for most of the exam and just stood up and held onto the table for the yucky part.

Her explanation of the prostate is that I sit all the time, so I guess it has got squashed into a bigger shape. She wasn't worried, even though I have a family history of prostate cancer.

She pooh-poohed my other worries about various problems, too, and told me how good things appear.

At least until she gets the lab work back.

Monday, June 4, 2012

I did not cry at this wedding

I am over on the right, near the bright orange dress
of my sister. The photo is great, but I was ready
to kill the photographer who kept making me move.
I went to a wedding over the weekend. It was beautiful, amazing, a little kooky (as befits my cousin) and so very, very hard.

It was several hours away so I used my manual chair so we could drive the better, more fuel-efficient car.

It was outside on a sloping lawn so I am not sure the power chair would have been any better. But in the manual chair, I was very much helpless without someone to help me move.

It was loud so hearing was tough. Any event with lots of people is loud. Plus, background music makes it a lot harder to hear.

Except for the meal, there was little sitting so hearing is even harder when I have to crane my neck to talk.

Mom asked later if anything would have made it better, other than the hearing and mobility issues. She acknowledged that was kind of like asking Mrs. Lincoln how the play was.

I thought of one thing.

At the ceremony, Mom said a few words. Talking about family, she said, None of us have come here alone. She was right ... of course.

In my case, I came with Mom, Dad and Claren. But a wedding is a wonderful way to remind me of what I don't have and don't expect to have ever: Someone to be with me like my cousin and her husband are.

That would have made it easier, I think. If I did not spend the day feeling alone, despite the love apparent around me.

The true struggle, though, is to not let all the bad things I have just described outweigh the good.

It was a beautiful day. I was with wonderful people who love me. The bride and groom came to say goodbye when I left and told me how lucky they counted themselves because I came.

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