#prog thoughts

I use a wheelchair often and I used to need it more frequently. When I needed it more often (in home and out of home) and I was in PT for my stamina, the best goal I ever figured out was I wanted to walk enough for it to be convenient, and have enough stamina to play weekly wheelchair basketball.

We never got to wheelchair basketball level but by setting my ambulation goal at convenience - making it from my car to the chairs in the pharmacy, going up and down two or three stairs - I was able to work on a difficult task (walking) and not devalue my current form of movement (wheelchair).

Walking isn't better than using a wheelchair, but even a few steps are a hell of a lot more convenient.

My dystonia medication has allowed me to walk again (with difficulty - I still need my wheelchair and can sometimes use a forearm crutch instead) and it also makes my short term and working memory very difficult to function with. At the end of the day somewhat functional walking is a lot more convenient than very functional working memory, so I stay on my meds.

(Conversely, even though I have verbal speech when I have expressive aphasia, I've been repeatedly encouraged to use my AAC because it's a lot more convenient for me to communicate with others. it makes me appear more disabled, and also, it's more convenient.)

👋I'm Luna, a 24 year old trans lesbian* who's journey with progesterone is demanding she seek attention online :) she/her, also it if (a) you're also transfem or (b) we've interacted and are cool <3

I'm a top switch who is becoming more sub-leaning each and every day :3

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#prog

Fair warning, this place will include things like incest and many forms of cnc, as well other hard kinks, if you wanna know more about what you might see please refer below :)

It's a thing that's going to get worse. It's a thing that went from undetectable to detectable on a less sensitive scan in under a year.

I'm tired of having prog thoughts.

My known progressive condition doesn't cause this.

I'm struggling to tell my loved ones. I might delete this post later. It's going to take time to process. I hope it's a false positive like PMR said it might be but she said she'd look at it and get back to me if it was and she got the paperwork I needed back to me but didn't say anything about the test results so now I'm worried that. It was a correct reading. And that really is happening to my body.

I can't even make a joke about it yet. It pops into my head a lot. It impacts people badly. I'm just extra worried about it tonight.

OT said it's a bad test result but people with it relearn how to do things and mine is mild right now but even for people it's severe for relearn how to do things and can keep doing them even while it gets worse.

Met a neuro PT I'll be working with yay :) she seemed very nice! She was very good about terrible things that have happened to me in PT before (which I try to say up front so my behavior makes more sense and so they can understand/meet my support needs in PT which boy I do have some tough ones). We talked about my conditions and she was very good at knowing what I might need in advance. She was so excited that I'll be getting a dedicated device and I am too :)

We also did a test I've never done before which was much harder than I thought and one of the only times I've ever tapped out of a test because it hurt too much which sounds bad but it wasn't! It was a good test. She had a picture of my different body parts in front of me and a grid and I had to say where on the body part she was touching using the grid. On my hand it was mostly easy but on my knee it got hard and on my foot it was so hard, I couldn't tell most of the parts apart from the places next to them, and that's the part that hurt so much I had to tap out. Yes even with my compression socks on! I can't imagine how much it would have hurt if it was just bare legs (yes I can it's how it feels to lie under a blanket that's not weighted)

Woof my neuropathy just keeps getting worse :/ not happy about how it will keep keep getting worse from here. What the hell

Then I saw a psychiatrist I don't want to see anymore and I won't get into that.

Finally I saw my therapist and it went well :) I don't talk about my partner much on this blog but I talked about them a lot in therapy and it was really lovely. We have a really great and mature relationship. I'm so proud of him.

(I try not to talk about them much because I respect their privacy.)

I have a lot of strong muscles there so I've got no clue what's going on :/ not seeing anything about it in my (limited) research pool about my dystonia condition.