ysobel: (me)
I posted https://ysobel.dreamwidth.org/538921.html about a kid with my medical condition who was in the hospital and needed prayers. (Personally I don't believe that prayers will fix everything -- it is not a vending machine, where you insert prayer and collect pony / get healed / etc -- but I like to believe that putting positive energy into the universe certainly can't hurt, and ... I'm babbling, right.)

I just checked her mom's Facebook page after a few days of forgetting, and the current situation is that her left lung has collapsed *and* she has raging pneumonia.

There are good things: she has a trach, added like a week or so ago, which means her medical team has better access to her airway; she *has* a good medical team; and her right lung is extremely kick-ass. (I guess having a fused rib cage means the lungs tend to get better about working in the space they have, or something?)

But she's only fucking 11 years old (I think her birthday's this month) and she's *tiny* and skinny and has no reserves to lean on. Her co2 numbers have been high, and vitals all over the place. I'm scared for her, and for her family, and in a weird way for myself. (Pneumonia is one of the two main killers of FOP people. Falling is the other. I don't walk or stand, so falling is less likely to happen, but pneumonia is still something I could get. I try hard not to, but,)

If you are so inclined, please send prayers or healing vibes Erin's way, or light a candle for her, or whatever positive-energy ritual you have. 💜💜💜
ysobel: (me)
Okay, so, uh. Most of you know that I have a condition called FOP -- Fibrodysplasia Ossificans Progressiva. For anyone who doesn't: it’s a really fucking rare medical condition where the body creates bone in and around muscles and tendons, progressively immobilizing the body into a human statue. It is incurable and untreatable.

This is a highly relevant video:

The 11-year-old in that video, Erin, got sick in April with basically the common cold, but it landed her in ICU. Between the severe scoliosis that FOP causes (I have way milder curvature because I was older when I started losing mobility, 10 instead of Erin’s 3, and my progression was slower) and the bone locking up her rib cage and taking up space in her chest, her airway is severely compromised. She was intubated as a last-resort measure for keeping her alive.

For the last two months, she’s been bouncing between ICU and “regular” hospital. About a week ago, her parents and doctors were discussing long term care options -- either BiPAP and hope like hell she never gets sick again, or a permanent tracheotomy. The trach procedure, complicated by the restrictions of FOP, would have her in the hospital until at least September and probably longer.

Four hours ago, she stopped breathing.

She has been successfully (re-)intubated, but... it’s bad and scary and so fucking not fair she’s a fucking *kid*, she isn't even 12 yet, she shouldn't be in the fucking *hospital* for *months*, let alone almost fucking *dying*.

(and if I’m being honest, this is fucking scaring me, not just on her behalf. My airway isn’t as bad, but this could be in my future too, and in another universe it could have been my path.)

So. Please, if you pray or send positive vibes or whatever, please send some to Erin and her family.

(She also loves postcards -- address is here -- but mainly I just want positive energy out in the universe for her.)
ysobel: (me)
There was one point, shortly after I was diagnosed with FOP, that I learned that the worst cases of FOP left everything immobilized except fingers and face muscles. At the time I was horrified, since I still had decent mobility, but then I figured it was only the worst case scenario and maybe I'd get lucky.


Turns out, fingers aren't at all immune. I kept meaning to document the restrictions -- more so now that within the last year my left index finger has gotten affected. So here's the current state of my left hand:

(Right hand is in better shape -- the base of the thumb is locked, the pinky is crooked and bent and doesn't straighten, and the tipmost joint of the index finger is mostly fused, but I can clench a fist okay.)


ysobel: (Default)
masquerading as a man with a reason

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