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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'm a disabled vet. I'm unemployable. SSDI is the only thing that makes things breathable for us. The only real way I have to make any money on the side is by painting DnD minis, dice towers, or maybe Gunpla commissions. It's so difficult to do much in a day that it takes me quite some time to paint just a couple minis. Months on a gundam. I just don't have the stamina to do much in a day. Fatigue is killing me. I've got a few painted, but I haven't had the energy to put them up anywhere yet. I have just as many to paint still.
Body wide small fiber neuropathy, a central nervous system issue and colon removal really tanked me. Winter (Wa state) and fronts rolling through, even in summer, tank me even more. I think the change in air pressure is what does it.
A cut in medicare means that I also now have copays. I have tons of doc appointments still. No one can tell me what the root of the issue is, or at least prove it as it's very likely chemical exposures. All funding that would have led to a "here it is" was shuttered. Regular blood tests due to colon removal. Regular tests due to the fucked up nervous system, which is still progressing 20 years after the last exposure and 18 after it started.
My wife is a PARA, but we're in a low income area and PARAs don't make shit. From my excel math, we can make it by with no SSDI. However, we'll have absolutely no extra money. No money to replace clothes. No money for home repairs. No money for vehicle repairs. Before you say it, we do need them. Taking public transit is incredibly painful, and shitty at best. Plus I have no energy to do that. I can barely do the appointments I have, even driving myself the only 20 mins, avg, to the various doc appointments.
I feel like such a waste already. I love math. I love engineering. I love turning a wrench. I love cooking. I can barely do any of it. These assholes seem to think we're all grifting and "welfare" queens. Sad thing is, there are many more vets in my position. Yet many don't seem to realize that the GOP hates us. They'll keep voting for it. Voting for that shotgun to the foot and pleading for more like a gimp gagging daddy for more.
@LillyPip @inclementimmigrant This is fucking insane, it's 2025, but these assholes want to take it back to like the 1900s for no reason at all.
IDK what else to say other than this admin needs to be stopped, and it has to happen now.
As a fellow writer I don't want you to die. I bought your book can't wait to read it. Stay safe and if we on Lemmy can do anything to help please let us know.
@LillyPip @inclementimmigrant
Sincerely sorry you’ve been caught in this mess. Have you considered reaching out to your congressional Representative? They can sometimes work magic for their constituents. It’s part of their job to get us through red tape barriers.
Also, every major pharmaceutical company has a compassionate care program for meds, although I don’t know about having to re-qualify every 3 months & how that might affect their assistance. If your doc has a hospital nearby, they should have staff dedicated to assisting patients in dire situations. Your state should also have help, especially if you’re receiving aid.
Don’t give up. You’re worth whatever trouble it takes. Being ill and disabled and homebound is all hard enough without this added bureaucratic bullshit to deal with. I wish you the very best! ♥️
@LillyPip @inclementimmigrant That's Trump for you! He wants to destroy you and many others!
i don't want you to die
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.
I’d like to say I don’t understand what you’re going through.
I’m a 3x attempt survivor, disabled, and terrified. I’m on SSDI, Medicare/Medicaid, and in HUD housing. My situation is not the same but I see you.
I wish there was more I could offer, but you are not alone.
I’m sorry. I wish you didn’t have to go through this. You don’t deserve that.
It's really disgusting how these self proclaimed Christians are so eager to discard the needy to give to the ultra wealthy.
There are still American out there are trying to fight to help disabled Americans like you and everyone else to be able to live a dignified life.
Hang in there.
I don't think the claim to Christianity is particularly relevant. Organized religion has been abused for its entire existence -- one might reasonably argue that that was the point of it.
Thanks for sharing this with us. If my friend was in similar circumstances, I would tell them to read this de-paywalled 404 Media article with a doctor and lawyer next to them, to do what the doctor and lawyer say and comply with all laws and best practices and sensible precautions, and that it wasn’t medical or legal advice and neither is this Lemmy post.
Also, corsetry kicks ass and your work is gorgeous. My SO found creators like Abby Cox, Bernadette Banner, and Nicole Rudolph during 2020 and it’s been an absolutely mesmerizing rabbit hole to fall into even for a cishet fella well outside the key demographics. Although, unisex medical compression support garments are more relevant to me lately; is that an angle that drew you to them with EDS and everything?
I’m glad there’s a gamepad in that picture too. What you’ve shared speaks to a life lived very well in spite of health and circumstance.
This must be terrifying. I disagree with this new requirement to appear in person every few months for reasons just like this, and I'd like to share cases like yours when I talk to Trump voters. Would you be willing to share the condition that keeps you homebound and prevents you from traveling in person?
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'm really sorry you're going through that. Trump and co have a LOT to answer for. I wish the best for you, Lilly <3
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.
We are witnessing murder.
I want you to know that I see you. I regret that we don't live anywhere near each other.
In my youth, I sewed my historical recreation garb (poorly). While I can't program, or do UX, I have worked with folks that did that while I managed the server side of things. And I have some experience in visual art.
I am also a decent listener. I'd be happy to listen to whatever you want to talk about. DM me?
I understand. In death, a member of Project Mayham has a name. Their name is Lilly Piper.
I'm sorry. I'm so sorry.
i assume you mean teledoc, yea that was suppose to be cheaper than in-person, so its going to get worst if they are cutting that too.
🫂