some cherries i didn't finish earlier and dried squid to snack on while i type this. trigger warning for potential medical malpractice (i'm trying to figure that out myself)
context: i am diagnosed with ehlers danlos syndrome (eds) (currently assumed hypermobile type but possibly classical or classical-like), myofasial pain syndrome, silent migraines, and endometriosis (at the time of this story the endo was unknown and it was discovered during a hysterectomy, so it's also hopefully all gone now.) i bring these up because pain is an important part of this story
during the end of last year/beginning of this year, i started getting non epileptic seizures from my chronic pain. that experience in itself was miserable with my normal providers (we'll call 'hospitals a and b') because i kept getting dismissed for it essentially "being all in my head" even after multiple staff saw me, said i was having a seizure, and rushed me to the back. since it was non epileptic though, and i didn't have the electrical activity they were looking for, 'hospital a' discharged me with some muscle relaxers and a diagnosis of muscle spasms and agitation (that a nurse had seen me before said she misclicked before printing and that it was supposed to be a different emotion she would change it to digitally when i asked about it, but i never checked, so take the agitation with a grain of salt.) within the hour and with the muscle relaxer in my system, i started seizing again in my friend's car. he took me to 'hospital b' across the city and it was there i was diagnosed with seizures.
the first time of two i was admitted overnight for this, i stayed at 'hospital a.' between them, my pcp, and my neurologist, it was determined my chronic pain was the most likely cause of the seizures. i was responding well to pain medication in the hospital, and i needed to get in with my pcp to figure out how to proceed, as well as get an eeg to fully rule out epilepsy. in the time while figuring things out with my pcp (such as if just gabapentin would work), i ended up in 'hospital a's' er again. once i was already VERY drugged up, they decided they wanted to transfer me to what we'll call 'hospital c,' which is in a completely different company and system than 'a or b'. that hospital has an epilepsy ward though, which is why they wanted me to go and have it ruled out then and there. at that point i think i would have agreed to anything and i didn't ask questions, i just said yes. after several hours and an ambulance was available, i was moved halfway across the city to 'hospital c.'
when i got to 'hospital c,' i verbally had to give all of my medications, diagnoses, allergies, etc to the nurses. i had a seizure getting wheeled off the ambulance, but i was alert for quite a bit after. it was at this time i told them about my seizures being known to be linked to pain, as well as emphasizing eds diagnosis. my eds and my seizures create a cyclic effect because my seizures pull my joints out of place, causing more pain, and then causing more seizures. once it was immediately clear i still wasn't epileptic, they wouldn't give me more than tylenol (that i wasn't responding to) and at a certain point, heat packs. most of my seizures lasted around 5 minutes, but there was one that they wanted to see how long it would last if they let it, and it lasted about an hour. i was given nothing to stop it during, and nothing to help me after.
i was there for about 2 days going through what felt like torture before i finally saw the doctor who listened to me. when i told her the same thing i had told everyone else i saw, that my pcp and neurologist had already linked my seizures to pain, she told me that nobody had told her that and looked shocked to hear it. trauma or anxiety had been everyone's best guess and it was assumed i just wasn't sharing something when i was telling them everything. she gave me a one off dose of opioids there to see what would happen and my seizures stopped for the first time in days. i was finally able to he discharged, and i was sent home with a few more opioids to get me through to my pcp. i've been on a slow release opioid patch since then and seizure free ever since starting it, with my life finally back in my hands.
a bit after my discharge, i got a letter in the mail from 'hospital c.' i assumed it was going to be a survey or something when i opened it, but no. it was an "oops, we forgot some paperwork" form, so i went to see what it was. it was my condition for registration medical consent form. none of what happened to me at 'hospital c' was something i had signed as something i consented to. this upset me and i reached out to the free legal advice for my state, because i am still waiting for my disability assistance review and have no income, and…. nobody's replied to me. after 10 days they sent an auto email to tell me that but since then it's still been crickets. it just hangs over me as a gross and uncomfortable experience.
i finished my snack way before i finished typing this and i wanted to throw on that cherry season in the pnw is so delicious thank you orchard workers ilysm and also just thank you field workers in general for picking so much delicious food you are a treasure