Sunday, June 26, 2011

Dinner table talk

It started with my niece saying she loved au gratin potatoes. It ended with me being the James Bond-esque hero of a comic book with a jetpack in my wheelchair bag..

After the potato comment, her little brother told my niece: Well, why don't you marry it.

I told him that he would then be brother-in-law to a potato, which my niece decided would be a hilarious comic book. She then wanted to come up with some other ideas for comic books.

My sister then suggested they write about the adventures of someone in a wheelchair. She was thinking of the amusing little situations I get into every day, like how my nephew seems to regard me as a chair.

But my niece said: Like if he was a spy. And his wheelchair had all kinds of cool gear.

These are just the latest niece and nephew to have this idea. I am still waiting for one of them to follow through.

Thursday, June 23, 2011

Good doctor's appointment; really weird dream

I went to the cardiologist today who said my heart is fine. He said he could not say for sure but that it was "very unlikely" I would develop any of the heart problems associated with Freidriech's ataxia. As far as the light-headedness goes, he basically said: Watch yourself; you have low blood pressure so you will really feel a drop of 10 points. This was great news, but the dream I had last night was too odd not to tell ...

Last week, when we were waiting to see the cardiologist, I started telling my little sister all the doctors I have seen. I got up to the neurologists and geneticists of NIH and lost track. Last nigh, I got a chance to see them all.

I dreamed I went back to NIH for a follow-up. It was not promising.

I got there and recognized many of the doctors as they introduced themselves. The first test was to ride a stationary bike that also had an arm exerciser. The doctors called in a therapist to make sure everything was safe and I was warmed up. I was hoping it would be one of the therapists I am still in touch with, but instead it was someone who looked like Sue Sylvester from Glee. She proceeded to get on the bike, ride a bit, announce her muscles properly stretched and leave.

Mom helped me onto the bike. It required me to take off my shoes, but I still rode well. I thought I did. The doctors said things like: Is that the best you can do and Not so easy, is it?

From there we headed to another office. I wanted to stop at the bathroom, but there was a baby in there being catheterized or something and a mother blocked the door, daring me to go past her.

I went back later. Holy cow! What a bathroom! It had fountains for bidets and lots of stalls. There was also a row of bike-like devices. But best of all: a self-serve soft ice cream dispenser. It seemed that the women's bathroom did not offer ice cream because several women were in the men's room getting cones.

Afterward, I went back and waited for my next appointment. NIH had changed. It had become kind of a hospice spot. I saw a lot of dead people, mostly older.

That was more or less fitting because when I finally got in to the appointment, the doctor told me there was "substantial" decline in my systems from the Freidriech's ataxia. They had only expected a "moderate" decline so they thought we should get "aggressive" in treating the FA. I don't know what they suggested. It did not involve radiation treatments. At least, any more radiation treatments. They told me that one of the doctors at an earlier NIH visit had treated me with radiation, which they said they do not use anymore. But don't worry, they said. (JUST TO BE CLEAR: Never had radiation treatments.)

That's all I remember. It wasn't all awful, though. I also won a pair of round-trip tickets anywhere in the USA at some town fair.

It was not limited to the continental U.S., and my top four choices were: Alaska, Hawaii, Puerto Rico or a U.S. territory in the Caribbean. It was so weird airline, like Scandinavian Air.

I was trying to decide if I should take the friend who encouraged me to play the carnival game where I won the tickets.

Apparently, I am not going to die because of the light-headedness; I am not so sure about the FA radiation treatment.

Tuesday, June 21, 2011

I want to be Clarence Clemons

For years I have wanted to be Bruce Springsteen. How cool would it be to have people striving to touch you or even your boot? As I read a bunch of the obituaries for Clarence Clemons, I think I may have chosen the wrong resident of E Street.

I know me as a 6-foot-5 black sax player? That would be so awesome.

It was this Clarence quote from the Washington Post's obit (misplayed, buried in the B section) that changed my mind: "Somebody said to me, ‘Whenever somebody says your name, a smile comes to their face.’ That’s a great accolade.”

I don't imagine I will ever be that famous, but that is all I could want.

This is the song I think of when I think of the Big Man.

Saturday, June 18, 2011

I thought I could be an island

I have always been a little jealous of the narrator in Simon & Garfunkel's "I am a rock."

I know he is alone, but a lot of us feel that way. Plus, there is the added bonus that "a rock feels no pain; and an island never cries."

I was operating on the "island never cries" theory when I asked my little sister to go home tonight.

As I have been drinking a lot to try to rehydrate, I am peeing more than a lot. For someone with continence issues who can't get to the bathroom fast, heavy drinking (of the water variety) can get ugly fast.

Suffice it to say that it did get ugly tonight, and with Mom and Dad out, I needed my sister's help. She came right over and got everything cleaned up.

I kept apologizing and she kept telling me not to. That finally did it. I started crying, not because I am incontinent or have Freidriech's ataxia, not even because my little sister, who I never got along with growing up, was giving up her evening to help me.

But because she did not mind helping me. And the grace and love was overwhelming.

So I asked her to leave.

If I was alone, I would not cry. I'd suck it up, find a bad movie and watch it.

Instead, she hugged me.

Uhh, what part of "an island never cried" does she not get? And how do I make sure she never does get it?

Monday, June 13, 2011

Yes, that is a heart monitor in my pocket, but I am still glad to see you

I spent the afternoon at several doctors' offices, getting more questions than answers with my beautiful service dog and less beautiful but awesome service sister. I call my sister less beautiful because of the whole brother-sister thing and because no doctor walked in and said, "She is a beautiful girl" as one did with Claren. But my sister takes better notes and asks better questions than Claren.

I felt dizzy today, real dizzy.

My doctor saw me during lunch and listened to me for 45 minutes. She is running tests on my bodily fluids to see if there is some imbalance causing my dizziness. She looked at my supplements and was OK with them. She laughed off the brain tumor idea. She said my symptoms suggest heart not brain. She lowered my antidepressant, which might makes for a bad tomorrow, because it can lower blood pressure. She also doubted it was an imbalance of something, but thought it was something not bad.

She also got me in to see a cardiologist that day. I told my sister that I love my doctor. The cardiologist gave me a 24-hour heart monitor to check for arrhythmia. He scheduled an echocardiogram for next week to check for cardiomyopathy, which is not unusual in Freidriech's ataxia but would really really piss me off because everyone has said I am unlikely to have the FA heart problems.

The echo will also check for a buildup of fluid around the heart, which is not as bad as it sounds and is easily curable.

If all that is negative, there is a medicine to boost my blood volume we might try.

I do feel better after a long and tiring day, so maybe it is all in my mind. Maybe I'll ask my beautiful dog or my awesome sister.

Friday, June 10, 2011

I want to run

The sun was shining and it looked like a beautiful morning out my doctor's window.

At that point, I knew just what I wanted to do: Run away.

  • Away from the dizziness and light-headed feeling I have had since Tuesday and that kept me from a party on a boat last night.
  • Away from the goddamned wheelchair.
  • Away from the fucking Freidriech's ataxia.
  • Away from the heat.
  • Away from the stress.

I wanted to run away from my life. Not suicide. The idea is to run to something better, not to nothingness. How great would it be to run to a beach? To dive in the water and feel its cooling power? To turn to the friend who came with you and laugh?

I couldn't run, though. The FA saw to that years ago.

Instead, I stayed and talked to the doctor. Low blood pressure is causing the head problems. I need to start eating more salt. She did not seem too worried about why it happened.

So now I am eating salty foods and starting to feel better. I still want to run, though, but who doesn't?

Tuesday, June 7, 2011

You make me dizzy, Mr. Matty

When I was in college, some friends decided that if I got drunk everything would balance out. Drunk clumsiness would cancel out ataxia.

I didn't try it then and have never been drunk so I can't say for sure that it doesn't work.

But if the dizziness I have been feeling off and on since I left work is any indication, the drunk experiment would fail. Perhaps you think that someone who is always a little dizzy would not notice. But holy crap is it annoying.

Enough to drive you to drink, but that would make me dizzier or would it. Maybe it would make me invincible like three stooges syndrome.

Saturday, June 4, 2011

Can't say the walls won, but ...

I finally got back to rock climbing after a few months off.

I missed it and had a lot of fun back on the walls, but I didn't make it to the top either time. I probably should have done some easier climbs, but I tried two tall walls.

On the first climb, my helper attached herself to my rope to keep near me. It wasn't the best idea. When she lost her hold on the wall, say when my foot slipped off a foothold and smashed onto her hand, she dragged me with her. Not that we fell -- we just were swinging on roped not holding the wall.

Also, near the top there was an outcrop for my helper but not me. I am sure she could have gotten over it but not tethered to me. But with the tether there was no room for us both. I would have had to climb the last 10-15 feet alone.

I considered asking if I could and trying to, but I knew I was struggling. So we called it quits there.

The second wall was another tough one -- the dreaded chimney, with its outward leaning wall and its overhang and its narrow spaces.

I think I started that climb about 9 p.m. and when I called it quits and got down, it was like 9:55. I kept twisting oddly. I think I might try without the shoulder harness next time -- that seemed to be pulling at me. But probably I was just twisting oddly.

My helper on that one did say my legs seemed stronger, and he should know -- several times he let me use his thigh for a foothold. I feel kind of bad about doing that though.

It wore me out. I was sore before I got home.

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