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I fell yesterday (Happy Memorial Day to me!).

The particular problems this time were that

• most people were at Mom and Dad's, so I wasn't sure who would hear Fame, and
• I was wearing both braces, which means neither leg was free to fall, which sounds like a good thing. It can be, when it helps you stand, but when one leg is underneath you and one is behind a superpole,  it just stretches things.

Once I managed to pull my leg out from under me, I phoned Mom. She, my sister and niece got me upright again at which point my niece (she thinks she so funny) decided it was like the scenes in Mary Poppins when the cannon goes off. Everyone  has heir jobs. 

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.

Disengagement

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.

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.

Testing

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.

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.

Chest-protected

I got a chest strap today that is the independent-use one I asked my wheelchair salesman for months ago. The world of durable medical goods is not known for speed.

It buckles in the middle of my chest, and it seems pretty easy to do.

Much to the chagrin of a certain person I live with, I won't wear it all the time. That would weaken my already wimpy trunk.

But I will wear it when food or drink is involved.

I think it'll help.

My life

The morning, I sat down so hard on the toilet that it took my breath away.

A few days ago, I coughed at my desk. Just a little cough but enough to send my face into the desk, unfortunately right where the bumper ended. I put my hand to my face, and it came away bloody.

No matter how much I exercise or try to improve my situation, I am still going to cough and smack my desk or sit too hard on the toilet.

It is unlikely to get better but very likely get worse.

I'm the truck

I watched episodes of The Last Kingdom last night till after 1. It wasn't that it was riveting (it is). I just didn't want to close my eyes, afraid of what I'd see.

But after the episode where someone killed someone (spoiler-free!), I had to sleep, so I shut my eyes.

Unbidden, unwanted but expected, pictures popped in front of me from earlier that evening: Mom in front of my chair, me unable to stop, her getting her legs caught and falling, her on the ground with my chair on her leg, neighbors rushing over, an SUV stopping to help, one neighbor running back into his house for paper towels, the paper towels getting bloody, the guy from the SUV feeling her foot, a cut on a temple, Mom holding her side. They went on and cycled back again.

 I broke Mom. (X-rays say I just bruised her.)

Now, my sister has to help me like Mom does, at least for today.

My sister came into my room this morning and told me Mom was Ok but felt like she'd been hit by a truck.

Mom joked a while back that we'd be in trouble if she ever got hit by a truck.

I never thought I'd be the truck.

Ankle violator

To get my teeth ready for braces (or brackets, as Dr. Ralph called them), I had years of appliances: bionators, expanders, whatever. (Autocorrect wanted to make bionators into violators. That, too.)

The new orthotic for my left ankle is like them -- I need it before the original brace does any good.

I wore it last night without a problem ... with that leg. My right leg was jumpy.

We'll see what happens tonight. I am going to wear a sock because it was fitted with one.