Tuesday, November 29, 2016

Siri saves the day

Siri and I have a complex relationship, especially on my iPhone.

For the most part, I ignore the option to ask for help on my phone. On the rare occasion I do use it, Siri responds that she not quite sure what I said. Very politely.

On my  watch, Siri works better, not perfect but better. I use her to call people on my watch when I need help. It's never really been life or death, though.

To be clear, yesterday wasn't life and death. It was just fall and use the phone or use Siri on my watch and don't fall.

I was pulling up my pants in the bathroom when my feet slid forward so my armpits were resting on the arms of my chair. I couldn't reach my phone unless I let myself fall.

"Call Sam," I asked Siri on my watch, and she did!

Saturday, November 26, 2016

The dark is rising

It is no secret that I don't care for Thanksgiving.

The season is part of it.

I have had plenty of energy the past few days, but the sun going down robs me of it.

It is rotten to deal with the cold, too. I hate all the extra work dressing becomes.

But it is not just that. My body seems to be failing more regularly.

I am exercising more, but my body seems not to care. And I fall or whatever. Maybe it is that I can't save myself like I used to.

Sunday, November 20, 2016

FA doesn't care

I am struggling.

For the past several weeks, all I have wanted to do is nap, read comic books and watch TV. I combined the last two by catching up on Arrow, watching 18 episodes over the past three days. (That Felicity Smoak!)

But amid my struggles, regular life with Friedreich's ataxia does not slow down, leading to a new catchphrase: There is nothing FA can't make worse.

I fell last week. Unlike my usual falls. this one hurt. I bashed my right side on the heating grate in the floor and think I probably cracked a rib.

Not much to do,  I hear.

The problem is, though, that normal people can avoid using the muscles that stretch across the ribcage. I can't. Or I can, if I want to stay immobile in bed. But I only have a few more episodes of Arrow.

Sunday, November 6, 2016


On Friday, Mom said that no one would believe my life. She was referring to an incident where I lost my socks and had to get dressed without socks, then ask my sister my sister to take off my shoes, put on socks and then shoes. (I should perhaps point out that I lost my socks on my bed. I can't get up safely without shoes.)

I think more unbelievable is the coda to my hearing aid fiasco over the summer. The company never informed my insurer  that I returned the aids.

I learned this when I tried to buy another set of aids from a third audiologist .

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