Thank you. There are a LOT of people like me, and many of them are children.
I want you to know me because people are more likely to fight for friends rather than strangers. Please understand that I am trying to manipulate you, and I’m really hoping you’ll manipulate others this same way. A lot of people are about to die, and some are already dying.
Please find and share their names and stories, and get others to do the same.
We need to be honest with each other.
I’m sorry. I wish you didn’t have to go through this. You don’t deserve that.
I’m happy to share my story with anyone.
I have a combination of rheumatological and genetic issues, including RA, Sjögren’s, Ehlers Danlos, severe osteoporosis, and a couple of related issues that have caused severe GI and heart issues. I can’t digest fruits or vegetables (they come out looking exactly how they went in) so my diet is severely limited, and I have seizures.
The drugs they’re saying I can’t have anymore include hydroxychloroquine, pilocarpine, prolia, and a few drugs meant to make my life more livable (tizanadin, gabapentin, mirtazapine, and ondansetron).
e: I can’t travel because of the seizures and that being out and about exacerbates my heart condition (SVT and periodic sinus arrest – I have a loop monitor).
I don’t take any opioids or anything like that, only things to keep GI cramps in check so I can at least eat a bit, plus metoprolol er and more paracetamol than is safe, because nobody is willing to even attempt to manage my pain at this point. I’m better at that through means that won’t ruin me physically or psychologically since I’ve had to for my entire life, since I was too small to have choices.
e2: Let me know if you want to know anything else. (edited to be a bit more specific)
I’ve honestly wondered whether circumcision dulls boys’ empathy?
If the first experience you have in the world is extreme pain in your most vulnerable place, what does that teach you?
Thanks. I appreciate that.
I’m not just talking about myself, but others like me. I’m Lilly Piper, but there are others like me. You can try to save all of us, and I would greatly appreciate your efforts.
Just so these dipshits know, I’m already feeling the cuts to Medicare/Medicaid staffing and services.
I live in the US and rely on Medicare because I’m fully disabled, to the point of being homebound.
Apparently the division that deals with remote visiting technology has been cut, so they can’t legally fill my prescriptions anymore unless I physically travel nearly an hour to their office every 3 months to remain eligible, and my doctor can’t legally renew medications that I’ve been on for 20 years. Within a couple of months I’ll have to stop taking all of my long term maintenance meds because I cannot travel to their office.
This will remove all my quality of life and will kill me slowly. I don’t want to die slowly of neglect, so I’ve got a decision to make, and I’m putting it off because I really don’t want to die yet.
I don’t know what to say except I have a name. I’m Lilly Piper. I’m a very good user experience designer, a pretty good writer, and decent friend.
We’re not faceless or nameless. I just want someone to remember that there are names behind these policies.
I’m good at sewing; I make period correct corsets from the 1800s and before (proof and more proof).
I’m actually great at sewing. I do embroidery and am a great listener. I’m also a good writer and editor. I didn’t need to die like this, but I won’t be homeless again, and I won’t beg in the streets for medicine. I just won’t.
e: links
I wouldn’t change anything except the assumption in the overall medical field that infants can’t feel pain. I don’t know much more about this specific condition, but I have a different condition in which they assumed infants can’t feel pain, and they were wrong enough that I still have trauma from that.
Take any medical knowledge from 20+ years ago that sounds horribly painful with a grain of salt, because that was the assumption relatively recently. Some doctors who learnt medicine more than 20 years ago still think that.
e: Groundbreaking research in 2015 says babies do feel pain. 2015.
It’s not something that needs medical intervention, necessarily, because there’s nothing that can be done, and most live through it. Also, until shockingly recently, the medical field assumed (or maybe hoped?) infants can’t feel pain.
Turns out they can, though.
e: I can’t spell
Every inch of your body’s skin being hardened and cracked to the point nearly every surface nerve is exposed and raw doesn’t seem that bad?
What does seem bad to you?
If you still believe in a god, google ‘Harlequin Fetus’.
If you don’t, don’t. Seriously, don’t.
‘Three words that made me an atheist: Paediatric Oncology Ward’.
I can’t remember who said that, but it’s spot on.
Hey man. How do you feel about how things are going in Gaza lately?
Still feeling good about that whole both-sides thing?
I asked you like a year ago if you’d eat crow this year when the situation in Gaza got a lot worse – would you like some mayo with that? I’d be happy to share some recipes.
I really liked that series when it came out. Now it hurts to watch.
If you didn’t vote, you voted for this. This is a representative democracy, and voting is the absolute least you can possibly do.
You don’t get out of your civic duty by abstaining – you’re implicitly supporting the winner by failing to do the bare minimum. You’re doing far worse if you uttered one sentence to convince others to abstain with you, which many, many did.
Unless you live in a literal cave, you’re complicit.
Good job everyone who advocated for 3rd parties or abstained because this ghoul was ‘the same’ as Biden or Harris. I hope you’re sleeping well that razing Gaza is the same as not doing that.
Great work. Perhaps you’ll get a discount on the new trump branded resorts they’ll build on that land, which we fucking warned you he wanted to do years ago.
I’m done trying to warn people. You won’t fucking listen so I’m wasting my breath, and these ‘I told you so’s just taste too bitter.
Wake me when you’re ruffling the ashes of your own countrymen from your hair (or don’t, because I’ll be seasoning your egg salad with what’s left of my bones).
e: MItHC reference, and since I’m both disabled and queer, I’m going down with this ship
With all due respect, newish Lemmy users won’t become mods or create communities with that attitude.
Everyone is new sometime. We need to make it easy. (Don’t let the sound of your own wheels make you crazy.)
I hope so too.
This whole administration is hitting them in the wallet, and coupled with the insurance hassles of their second or third home being threatened by insurance companies pulling out due to climate change, they’re starting to feel it.
Fascism won’t help most of them, and it’s already starting to hurt. Florida relies on their money, and it’s already on life support.
Boo fucking hoo.
Especially Florida.
Never underestimate the power of snowbirds.
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