Thursday, October 19, 2017


I spent yesterday afternoon at my awesome physical therapist's, where I got a hat as a thank you for speaking to the class of grad students, and a speech therapist who my PT, my sister and my sister's speech pathologist friend all say is awesome, too. She was.

So it was a productive day, even if Fame didn't get to eat till 6:15.

It's not like this is a surprise, but my PT confirmed that we humans were not the star of the class. She said she was fielding questions about Fame for days after, which I'd expect. Fame is cooler than I, though I do have a more interesting neurological condition.

My PT also gave me some exercises to try to improve some issues and confirmed some of my thoughts.

The speech therapist listens to my problems, watched me drink and then recommended this strength trainer for your lungs. It sounds cool and if it works, I'll breathe, speak and cough better.

Go me.

Tuesday, October 17, 2017

I ❤️ my cardiologist

I went to the cardiologist today for a follow-up on my stupid heart. I should have known it would be a good appointment when he saw my UVA sweatshirt and he pulled his undershirt up through his collar so I could see it was a UVA T-shirt.

It got better.

I told him "I worry about my heart." His response: Don't worry about your heart; let me worry about it.

He then went over all my worries in-depth. He agreed I should have a pulmonary function test to get a baseline, and he did point out my body parts are degenerating because of Friedreich's ataxia, although he used a kinder word like deconditioning. But he made it very clear that my heart is fine and not worth worrying over.

It was pretty great.

Sunday, October 15, 2017

No more worries

Mom asked recently if I was going for a walk with just Fame to tell her all my worries. I said no, and she asked why not, pointing out that I used to tell Claren my troubles.

She had a point, but I am not going to start spilling my guts to Fame -- she doesn't need that. The more I  thought about, I came up with three reasons.

First, I am dumb. Lord only knows what I did to Claren by telling her my worries. With Fame, I stick to song lyrics and happy words.

Second, in retrospect, I think Claren was an "old soul." She was happy I was her person, but she was more than happy to "love the one you're with." Fame is, too, as long as I am there.

I hesitate to use the word "clingy" because I find Fame's neediness what I need, but anyone who has seen her upon my return from one of the rare trips without her knows what I mean. She jumps into my lap as if to say "OhmygodIthoughtyouhadleftmeforever. Then she pins herself to my chair. When I returned to Claren, she was like, "'Sup."

Finally, I lived alone when I first had Claren. I needed to talk to her. She was my worry-eater, my version of a sin-eater. Now, Fame can be a service dog; I have Mom as worry-eater!

Friday, October 13, 2017

Lights out

Friday is my busy day, but I had to make time to complain again about the lights in the bathroom going off while I was in the stall.

It is dangerous that this happens not infrequently.

And it is frustrating that one of my jobs seems to be telling people about allegedly accessible thing that are in reality potentially lethal.

I was interviewing one of our former leaders. An old timer, he talked about how the agency had had to learn a new way to deal with something, just like you are doing for us with wheelchairs. I wish I wasn't.

Tuesday, October 10, 2017

It's a wheelchair stall

I work with a guy who frequently asks me if he can use the wheelchair stall to change his clothes. I don't understand, particularly since one of my friends mentioned the gym in our building has a locker room, but I say yes.

I mention this not to make certain sisters angry. I am not using the stall. He is a nice guy. I am sure he thinks he is being kind.

But it is frustrating.

It requires me to judge my bladder -- not the most trustworthy of organs, not that I have a trustworthy organ.  How would you feel if a co-worker asked you if you had to go to the bathroom? That is essentially what I am being asked.

And believe it or not, wheelchair stalls are meant for wheelchair users to use to go to the bathroom, not for clothing changes.

I don't know how to say no. Mostly, I don't get how a nice person who knows and regularly helps me out can be so tone-deaf on a disability issue.

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