follow my tweets at #FightAbleism | eds & co| disability awareness & advocacy| malpractice survivor| intractable pain|
https://t.co/jA2iUJ2Caz
Nov 12, 2021 • 6 tweets • 2 min read
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
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
Nov 10, 2021 • 16 tweets • 9 min read
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
Oct 21, 2021 • 9 tweets • 3 min read
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
Oct 21, 2021 • 5 tweets • 2 min read
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
Oct 20, 2021 • 5 tweets • 3 min read
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.
Oct 20, 2021 • 5 tweets • 4 min read
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
oh also the best part of today was the Walmart pharmacist telling off walgreens. also found out my meds have to be REFRIGERATED! WALGREENS NEVER TOLD ME THAT!!! also @Walgreens never had it in the fridge always on the shelf and Walmart had it in the fridge. the incompetence hurts
part 5: after a bit of work I was able to transfer my perscription to a Walmart in another town. I know if I stayed with @Walgreens I would continue to have late meds, get excuses, and have my health decline. I knew id continue to go to the ER [high risk during covid] due to this
part 4: they are still messing up! they deleted my other perscription thinking it was a duplicate [it wasnt] and now 9 days after my original order & blaming everything on the supplier decided to change supplies and say it will come Monday. its a bit late now isnt it?
Oct 15, 2021 • 4 tweets • 2 min read
disability is when you have a permanent or temporary condition that negatively impacts how you interact with your environment. it can be acquired or congenital- and dynamic, stable, or progressive in presentation. there are many models of disability: mainly the social and medical
I am disabled due to a chronic illness & also due to the cumulative impacts of 15 different mental and physical conditions. between undiagnosed adhd & asd, and official eds, neuropathy, pinched nerve, costochondritis, asthma, lung damage, rib slipping, crps, migraines, headaches
Oct 15, 2021 • 6 tweets • 3 min read
#SpoonieChat do you say you are chronically ill, disabled, or both? why? whats the difference? to me chronic illness is any chronic health condition. it doesnt have to cause discomfort or interfere with your life #NEISvoid#DisabilityTwitter#chronicpain#chronicillness#spoonie
disability is when you have a permanent or temporary condition that negatively impacts how you interact with your environment. it can be acquired or congenital- and dynamic, stable, or progressive in presentation. there are many models of disability: mainly the social and medical
Oct 15, 2021 • 5 tweets • 2 min read
update on my Walgreens problem @WalgreensP a med that I need daily to stay out of the hospital has been ordered every day since last Friday. they told us theyd call with news & never did multiple times. never accepted responsibility either #NEISvoid#SpoonieIssues#EDSstruggles
I'm so mad that this isn't even the first time this has happened. Walgreens knows that these meds are rare & often take a long time to come, but usually order them the day they should arrive. they never call back, often have us come in when meds aren't ready, and make excuses
