• LillyPip@lemmy.ca
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    2 days ago

    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)

      • LillyPip@lemmy.ca
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        2 days ago

        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.