I need a costume

When I go for walks on the bike trail, I often ask a friend if she wants to join me. She lives like a block from the trail and a block from my grade school, so close.

Yesterday after I texted, she told me that she was preparing for a Halloween party at the house of her friend who lives on my street and that I should come.

I said I'd try but was a bit dubious that it would be accessible. Her friend lives in one of the tall, narrow houses around here. My friend said it was out back, though, so I put on my Batman T-shirt and went up to see.

I probably would have turned right around shortly after arrival because I had to go on damp grass at a modest angle, but my friend was determined and pushed and braced me.

That was how I ended up spending an enjoyable few hours with a fox, a doctor, some X-Men, an astronaut, the social media cloud, some warriors, a Star Trek captain and more. Fame liked it, too, especially the little dog who had on a T-shirt that 'I am really a cat in disguise."

Testing 1, 2, 3, 16

I going to take all of your blood, Matthew, the phlebotomist joked as my Thursday kicked off.

I'm alive, so I guess she was exaggerating, but it was a lot -- 16 full vials and two half-full vials discarded because the blood stopped flowing. The three punctures in two arms and big bruise in one tell the tale of a serious blood test.

But I didn't faint.

After that I came home and had breakfast, provided a urine sample (never easy for me -- just the logistics) and laid down for 45 minutes.

Then I was off to a pulmonary function test, which showed I have about 60 percent of the lung capacity I should have. This didn't worry the doctor. Neither did my shortness of breath.

He is more concerned with my mild sleep apnea, which he is confident will get worse. When he was mentioning treatment options, Mom mentioned that we need simple options because I can't do hard stuff. He replied by suggesting a tracheotomy. Sort of.

He said: we're not there yet, but a tracheotomy is an option. You'd not use it during the day and just open it at night.

Rather than surgery, I am first going to have an at-home sleep study.

The frustrating thing is that I was not worried about my apnea. My doctor mentioned it in some notes after my recent physical, and that is what the pulmonologist took his cue from, not what I was saying about my shortness of breath. Whatever.

I finished my day off with a pneumonia vaccine.

Working from home

My division is going to a national wildlife refuge tomorrow. I'll be teleworking.

The main reason I am not going is I don't have a  ride, even though I know Mom would drive me.

I thought about asking a friend for a ride, but that would mean someone would have to push me around because I couldn't push my manual as needed, not to mention loafing me and the manual into their car.

 It's too much to ask someone.

I'd also need to get picked up from home as I can't go to the restroom at work in my manual.

Plus, public restrooms aren't the best. Too many unknowns.

I hate being disabled.

Therapied

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.

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.

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!

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.

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.

But then

The day started off well enough. I worked with my in-home PT and felt good. But then ...

• I went for a walk on the bike trail. I think I was too alone with my thoughts because I started to feel rotten.
• I came home and had lunch, and my legs started to jump. It is a challenge to keep one's for on the footplate when one's legs are jumping. I decided to do some standing exercises at the pole by my bed to settle my legs, so I asked Mom to stay up at the house for a bit. Good thing. I undid my seatbelt and started to stand, only to have a leg jump, and send me falling over at the waist. I didn't fall, and Mom helped me back into my chair. I did a few stands, then my left leg went off again -- this time while I was standing. Mom and my arms got me to my bed, but my legs were still restless.
• After dinner, I went for a walk. It was a beautiful night, so I got on a sidewalk to go farther. I went up a curb cut, turned my chair down so I could safely maneuver on the sidewalk, turned to go on the sidewalk and immediately ran into a storm drain section of sidewalk that was significantly higher than the other sidewalk sections. I turned around but got stuck. I managed to free myself but then had to hunt up my joystick knob, which had fallen off. I finally recovered and started home, but Fame had to poop. I got stuck again -- this time trying to pick it up but again got free. 

Never trust good mornings apparently.

Lucifer is fun

Last night, I finished catching up on Lucifer.

I realize it is a little suspect theologically. I mean it is loosely based on a comic book (even if it is a comic book by Neil Gaiman).

My main problem is not the devil or even the wife of God. It is that everyone seems convinced that God has a plan.

That would mean my disease was planned.

If God has a plan, he is a real #@&$!.

Hanging in there

At the end of my physical, my doctor said, well, you're hanging in there, which is really all you can say to someone who is generally healthy but does have a degenerative disease.

She was not cool with the medicine I am taking to slow my heart, so I need to revisit that with my cardiologist in a few weeks. She thinks it might play a role in me being out of breath.

She also said I might be breathing wrong or have some pulmonary problems. She didn't seem worried, though.

She also suggested I might have a parasite.

I said to her, I guess that's just how my body works. Not that I believe that. It is just better to say than, I guess I have kuru, even though I am not a cannibal from Papua New Guinea.

She replied: Maybe, unless you have a parasite.

Now I have that to worry about.

But I am in pretty good health, I know, except for the Friedreich's ataxia, the kuru, the parasite and the breathing problems.