Patience
Dec. 2nd, 2025 08:00 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
viridian5Three times in the last month I had to give a kind-of brief presentation on my health issues to trainees at a doctor's appointment, twice at pain management and once at dermatology. It was especially weird at pain management since I'm talking about Chiari I malformation, Ehlers-Danlos syndrome, and my brain surgery and aftereffects in detail while my doctor sits there silently. Somehow, it always goes from the doctor asking if the trainee can sit in to me giving a mini dissertation.
I automatically slipped into my work voice every time.
Aside from forgetting the words "vertebra" or "vertebrae" in the first time I had to do it--though I think "you know, the small pieces that come off the spine" got the point across--I sounded very professional and knowledgeable! Me, the professional patient.
Other moments from my pain management presentations to trainees:
One trainee saying Chiari only manifests obviously in childhood if it ever does, which was so wrong, especially since I manifested in my 30s, which is actually the cliché for Chiarians who don't show it in childhood, so I politely set her straight.
Explaining my horrific adventures in trying traction and why it led to me absolutely refusing to try a Halo or get my neck fused.
Remembering not just the name of the hospital that did my surgery 19 years ago--and that it's different now--but also my neurosurgeon. (I mean, considering that I couldn't recall the words "vertebra" or "vertebrae" for the life of me in one visit.)
I had no idea walking into these appointments that I needed to study first.
+++
Yesterday, my neurologist prescribed a migraine-related painkiller. When I talked to my pharmacy today, they said my insurance doesn't cover it, and paying out of pocket for 40 tablets would be... $6,000. My reaction was literally "PFFFFFFT!"
I automatically slipped into my work voice every time.
Aside from forgetting the words "vertebra" or "vertebrae" in the first time I had to do it--though I think "you know, the small pieces that come off the spine" got the point across--I sounded very professional and knowledgeable! Me, the professional patient.
Other moments from my pain management presentations to trainees:
One trainee saying Chiari only manifests obviously in childhood if it ever does, which was so wrong, especially since I manifested in my 30s, which is actually the cliché for Chiarians who don't show it in childhood, so I politely set her straight.
Explaining my horrific adventures in trying traction and why it led to me absolutely refusing to try a Halo or get my neck fused.
Remembering not just the name of the hospital that did my surgery 19 years ago--and that it's different now--but also my neurosurgeon. (I mean, considering that I couldn't recall the words "vertebra" or "vertebrae" for the life of me in one visit.)
I had no idea walking into these appointments that I needed to study first.
+++
Yesterday, my neurologist prescribed a migraine-related painkiller. When I talked to my pharmacy today, they said my insurance doesn't cover it, and paying out of pocket for 40 tablets would be... $6,000. My reaction was literally "PFFFFFFT!"
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