i hear the voices when I'm dreaming

So I finally reached the point of action with the head-shaving thing; stopped dithering, and made an appointment. For today.

It was originally scheduled as a shave with razor, but I got a call this morning saying the barber got sick (argh) -- unknown if covid but did I want to reschedule? I didn't really, so I switched to clipper-shave, which more people there could do. Not complete hairlessness, just dark fuzz.

I had my morning aide braid my hair (simple braid, not anything fancy) and cut it so I could keep it. Then went in and had the shave. Clippers tickle a little, as it turns out.

They had good covid policies: staff vaccinated and masked, customers masked. She never fully removed my mask, just unlooped one ear to buzz that and then re-looping. And it was fast; I was in there for maybe ten minutes including paying.

The result is AWESOME.

I love the feel of air currents against the back of my head-- it was windy when I got out and I just spun around giggling because it felt so good. I like the way my pillow feels when I get into bed. Every one of my aides so far wants to touch it, and I like being "petted".

I just. I love it. So much.

I'm too tired to add pics (I wish it were easier to upload images to DW; that's one thing rav uses to do really well) but I did post one to Twitter -- https://twitter.com/isabeautiful/status/1493419537332465666

(The cryptic tweet was after braid cut-off, but there are a couple IRL people who follow my Twitter that I wanted to notify before I said anything publicly.)

I tend to make occasional, and sometimes oblique, references to my physical condition, to being disabled, to being in a wheelchair, to mobility restrictions. And anyone who's met me IRL knows that I'm disabled, even if they don't know how or why. But I forget, sometimes, that not everyone knows what's up. That my disability is not as blindingly obvious on the internets as it is in meatspace. That even the people who see me regularly don't live with what I have, don't know it as intimately.

So.

A startlingly high percentage of the people working with Dreamwidth have Weird Medical Shit going on. I ... am one of those.

The condition I have is called Fibrodysplasia Ossificans Progressiva. (Well, usually, it's just called FOP, because three letters is easier than thirty-five.) This is a long complicated name that is actually relatively descriptive of the disease: muscle, and tendons, turning to bone progressively.

( fun details )

As an example of what FOP looks like, I give you Harry, the official FOP skeleton:



(The details of bone formation varies individualistically. The general effect doesn't.)

Like I said. Fun tiemz. \o/

(I've been staring at this entry for three days and not making much progress, so I think that's all for now. Though I will mention that if you have spare money and are looking for a worthy cause to donate it to, please feel free to donate to IFOPA, which funds research and support for the FOP community. I can give you my RL name if you want to reference it in the donation, though that isn't required. It's not as well-known or wide-reaching as organizations for breast cancer research, or heart disease, or starving children in other countries, or what have you; but that doesn't make it any less important.)