Wednesday, May 22, 2019

Testing pain

Here is how I'd describe the worst medical test I have had, an electromyography or EMG:zElectrodes are attached to your hands or toes,
  • A needle is stuck in your forearm or heel area,
  • The test giver then manipulate said needle to get it where they want,
  • If you flinch during the manipulation, they tell you to relax,
  • Eventually, current is passed through you, which sounds bad, but if you survived the manipulation, being shocked is a breeze.
I had a blood test this week that reminded me of the EMG. It tested my blood-oxygen level, so it had to be done in an artery, at the pulse in the wrist.

The nurse warned me it can be really painful for some people but to try not to move because that slows the test down. I said OK, looked away, and she jabbed me.

It hurt but not superbad.

Then she did something, and it hurt pretty bad.

Then she did something else, and it hurt close to superbad.

Then it was fine.

I looked.The vial was empty. The pain was because she was manipulating the needle to try to get it in the artery.We switched arms and finished in seconds.

And everything was fine.

Sunday, May 19, 2019


Mom said to me today, You look sadder than usual; anything I should know about?

Leaving aside the "than usual" phrase, I told her it's my hearing.

It makes me want to disengage from groups of people, even people I love. And that's beyond the disengagement of not being able to hear well.

So yeah, I am sad.

Wednesday, May 15, 2019

I hate when she's right

My sister was yelling ate a few nights ago because I wasn't wearing my chest strap all the time.

I told her constant wearing would weaken my trunk muscles, but she was having none of that.

It won't weaken your trunk muscles, she said. Email your physical therapist, she added. I'll bet you $10 she agrees with me.

I remember my PT telling me not to wear the harness I originally had on the chair for the trunk muscle reason, so I suggested we raise the bet. I then went to email my PT.

My PT's response: Don't worry that wearing the strap will make you weaker. It's better than reading your face, dummy. (The dummy was in my  head.)

Now I owe my sister $10.

Monday, May 13, 2019


Last week, Mom and I went to NIH to talk to a class in genetics counseling. We went in 2017, too. The teacher was my genetics counselor when I was diagnosed with Friedreich's ataxia.

I enjoy going both to talk about myself and to learn something.

This time I learned that I am a big proponent of genetic testing for FA.

I argued that I didn't think people should bring someone with FA into the world, not because people with FA aren't worth it. Let's face it, I rock, and I am proud of my awesomeness (my brother's too).

But it is beyond hard. Every day.

No one should have to deal with it.

Saturday, May 11, 2019

Too many straws

One day 10 or 15 years ago, the stand on my newest action figure, Moishe the Wild Thing, didn't fit. I kind of lost it.

That's the first time I really knew what it meant to be the camel, whose back was broken by one last straw.

It has happened since, to be sure, and the straws are building up these days.

  • Mom is not recovered yet. Every time  close my eyes, I see the incident.
  • People in my extended family are hurting.
  • I got a keyboard recommended by an assistive technology specialist, and it is not making me type faster.
  • Work is kind of overwhelming.
  • A friend who said they would text didn't.

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