Sunday, June 24, 2018

Dipping my toes back in the water

I went to swimming today for the first time since February.

It felt good to work my muscles in ways I haven't in a while and to see people I haven't seen in months.

My heart held out, too! And I only checked my heart rate once!

Tuesday, June 19, 2018

“Well, goddamn it, Matty, where doesn't it hurt?

In Raiders of the Lost Ark, Marian is comforting Indy, but everywhere she to aches, he complains.

Exasperated, she yells, “Well, goddamn it, Indy, where doesn't it hurt?”

He points to an elbow, which she then kisses.

I was thinking my elbows are pretty clear, too, when wondering if anywhere on my body has never gotten a prescription medicine.

You see, I just got a prescription toothpaste. I didn’t know there was such a thing.

Other than my elbows, it’s iffy. My legs are out with restless legs. Major organs like the heart, brain, stomach and lungs are out. I’ve had Rx’s for my bladder, bowel, nose and eyes. I’d say my ears are clear, but what child doesn’t have at least one ear infection? My arms in general are OK, but my right hand burned badly as a child.

Plus, there is all the prescription pain relievers I have gotten, but never used.

I am a mess.

Saturday, June 16, 2018

'Technically,' I'll live

I went for my first follow-up to my heart thingy Friday. It went well.

Because the operation involves making scar tissue in my heart to block the misfiring parts and the doc, or his assistant actually, said it takes three or four months for the scar tissue to fully form, we w won't know until then if it worked.

But I haven't had any problems, so  they term the operation "technically" successful, and the MD (not doctor but "Medical dude) made air quotes around technically.

He did say the first month is the riskiest (not in terms of dying but of the operation failing), so because  I made it through that, I should be good.

And he eliminated one medicine -- the blood thinner -- and said I can stop the evil heart medicine in a month. So YAY

Sunday, June 10, 2018

Too far gone

When I first met with my neurologist at the Children's Hospital of Philadelphia several years ago, he mentioned several studies in the early stages and asked if I was interested.

I wasn't.

Early phases are gross-sounding. They test how much of a drug until someone gets sick or side effects. Neither are appealing to me, so I essentially told him that:
  • I would let people who are more desperate for a treatment do the early phases and 
  • I didn't have severe Friedreich's ataxia, so I'd wait till the kinks are worked out of the treatment.
Since then my body has kept getting worse -- my heart, my ears, my legs, everything. 

Even though I don't like them, I was now desperate enough for a cure that when I saw a Phase II trial I was eligible for, I emailed the coordinator to see about taking part.

She emailed back that my results on the peg test were not good enough.

The peg test is a particularly malevolent device developed to drive FA patients crazy. It doesn't look evil, but looks are deceiving. One side has a four-by-four grid of holes. The other side has a shallow dish with 16 pegs to go in the holes. Using one hand, you must put each peg in a hole and remove it one  at a time. Oh god, I hate it.

The study mandated a score of 150 seconds or better. I just assumed I'd meet this requirement.

I took 207 seconds.

Now that I am willing to donate my body to science (or at least to a drug company), I am too disabled take part.

Friday, June 8, 2018

My mascara

I got a  black eye the other day.

I can't remember the last time I got a black eye. I didn't even get one when I got hit in the eye at a batting cage when I was like 10.

Despite the rubber baby Matty bumpers, I whacked my eyebrow hard on my desk when I coughed. The next day Mom noticed my black eye.

This might be the fault of the blood thinner.  Or it might be my body's latest fail. Both are pretty darn likely.

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