get addicted to it
I was cut off from opiates after a botched surgery. my pain was still severe but I was told I should be healed by then [I wasn't, due to eds] so I don't get any more pain meds
I was denied opiates when my foot was broken in so many places it couldn't be counted
because when my doctor hurt his ankle he just took an ibuprofen [which is contraindicated in my case] and was fine
I was denied opiates when I had dislocated ribs because "thats impossible" so im just drug seeking
im constantly denied opiates when I explain the level of pain eds
causes and that NSAIDs don't work for me & neither does steroid shots like cortisol. numbing agents also don't work on me. doctors interpret this as me asking for opiates, and thus being "drug seeking" a term i hate
here are my thoughts on it: everything in the ER is a drug. if
drugs are meds and meds are treatment, asking for drugs is asking for treatment. most people in the ER asking for pain relief aren't addicts they are people in pain who want/need relief! if you know opiates work best for pain management, and your pain is severe, it makes sense to
1. emil 2. may 5 3. fighting ableism is my priority and fight ableism is my movement name.4. [new] secret life of Walter mitty and unrest film @unrestfilm 5. I prefer a small group of close friends over a large group of less close friends 6. I turn my negative experiences into
positive change 7. how easily small things make me doubt myself 8. talking outside at a pretty garden with some drinks 9. lots of trauma 10. gray ace+bisexual/pan romantic [and transgender] 11. accessible sex 12. this weekend because my parents didn't understand what a quarantine
I'm so dissapointed in the doc who has been my best PCP for years #NEISvoid#DisabilityTwitter#EhlersDanlosSyndrome I have cci and it got significantly worse the last 2 months. I've tried to deal with it myself, but its been a major issue for pain, mobility & neuro symptoms #eds
that nothing helps. we changed from a pain patch to an injection because it give me more relief, but my symptoms persist & cause serious limitations i didn't have before. my PCP told me I had to do PT to get scans. I said okay, because this has happened before. I need 6 weeks
to get scans, which is a lot. my 1st pt was terrible [and I posted about it earlier] and my next pt is somebody I've never been with, so idk if they know eds. the only PT who I know, like, and who knows eds is booked through December. I called insurance to ask about getting scans
if @joerogan cared about his followers he would stop spreading vax misinformation, minimizing the impact of the pandemic, and promoting ivermectin. he took tons of stuff when he got covid including monoclonal antibodies but doesn't think it helped at all? ivermectin was all that
helped according to him. @joerogan also conveniently left out a lot about the safety of the vax & how herd immunity works. vax if high risk. don't if not he says. well vaxes aren't as effective for high risk people & if youre at risk+cant get vaxed u must rely on herd immunity
which is something we will never achieve if only the sick/at risk vax. also the less people are vaxed the more mutations, deaths & hospitalizations happen. @joerogan if natural immunity was enough to protect the healthy COVID WOULDN'T BE A PANDEMIC! natural immunity is also less
A4: when it comes to info people have id say I want chronic illness/disability education to start young. I had no idea I was a spoonie when I was young so I never asked for help, harming my health greatly. I also got a lot of conflicting info about eds from doctors #SpoonieChat
most of the info I got before I found my most knowledgeable doctors was from others with ehlers danlos & social media. I want docs to have/give up to date+standardized info on eds & similar conditions. I want docs to stop perpetuating harmful ableist stereotypes of disability too
I recently spoke to a med student and at her school seems like the #eds education is really good but 99% of the doctors ive met were unfamiliar with it or misunderstood what it is. doctors have misunderstood many of my health conditions-saying some are fake, psychosomatic, caused
whenever I ask mom to make the lights dimmer she complains being in low light will give her a headache-I ask for low light as light causes headaches/migraines/sensory overload/general asd burnout/eye pain long covid&all this triggers the pain/nausea/fatigue from other conditions
I don't want to cause anybody with any condition pain so I try to compromise. its very difficult I can't have no light [ideal & sometimes necessary for me] but I have empathy so I don't complain about her needs.
it really bothers me how every single time I ask if I can dim the lights mom has to tell me how awful it is & it always makes me feel like a bad person. the hypocrisy also hurts. having some perspective would also be nice. none of my headaches or migraines are treated w/ OTC meds
PLEASE DO NOT DM OR TAG ME ON THIS ACCOUNT ABOUT MUTUAL AID. MY OTHER ACCOUNT IS MY MUTUAL AID GROUP- THIS IS MY *PERSONAL* ACCOUNT! IM GETTING BURNED OUT. PLEASE READ @ChronicCrwdfnd RULES BEFORE DMing OR APPLYING #ChronicCrowdfund
mutual aid links to donate to below