Got a new idea for a novel. Pre-industrial society on nameless planet. Disabled people sometimes disappear and come back “fixed”. It’s the aliens. The kicker is they’re purifying the gene pool and replacing the people in synth bodies. I know this might trigger some disabled people, but what I wouldn’t give to be in a non disabled body with the same mind… #sciFi#ChronicIllness
Character arc… someone who is able-bodied wants the synth body, gets into an “accident” but doesn’t get chosen and has to live with their injuries. Acceptance is one of my strongest character arcs. Sometimes there is no fixing. I can’t wait to put my PhD to rest so I can write fiction again! #amWriting#sciFi#ChronicIllness
"According to a Centers for Disease Control (CDC) report from September of last year, around 18 million adults reported dealing with long COVID as of 2022."
i think the hardest thing about becoming inflicted with a debilitating chronic illness in your 30’s is having to reset your understanding of your own body, your capacity, your energy, and learning to be even more understanding, forgiving, and kind to yourself
and giving yourself time to grieve the person you used to be
i’m still there in that space.
i’m also still convincing myself that my dreams and goals don’t have to change. its the steps i’m taking to achieve them is what has to change.
My new med for RA finally arrived by delivery courier. This is after 6 weeks of talking to the drug manufacturer, 2 speciality pharmacists, doing paperwork, intake phone calls, and finally scheduling a delivery.
The med is covered under a provincial ‘compassionate care’ program because it costs $6,200 USD / month out of pocket.
I share because it’s important to know what we go through. We don’t choose to be sick. We don’t want this. We just want to be well. 💜
Hey Fedi friends! It's the end of the month again which means it's time for a new mutual aid request. (This ended up being a little longer than I expected but bare with me! CashApp & PayPal links at the end! :floof_Heart:)
To try and keep this short and since many of the folks who have known me or seen me around the Fediverse know or have an idea of what the current situation is like.
I'm a minor with no source of income outside of coding which does not bring nearly enough in for me to even buy lunch most months so I have to resort to mutual aids or theft (Which got me in a lot of legal trouble, but fuck the corporates.). I need at least enough fundings to support me (Age 16, turning 17 this year) and my younger sibling (age 15).
I am a high school student living in a crappy situation with divorced parents. Where one house, the main house, I am refused basic needs such as, but not limited to, food, water, hygiene, clothing, proper medical care, etc. While the other house, my mothers, is a hoarder mess with little to no food, and when there is non expired food that has not been gotten into by animals, months, mold, maggots, etc, it is often times one of the following: Chocolate, cookies, Twinkies, hostess foods, etc. My mother hoards much more than just garbage but indeed, animals also. (With over 70 animals in the house and dogs who are not potty trained along with more animals, outside of the house).
Neither houses include proper medical care. I have a chronic skin disease that causes me severe pain and if it gets bad enough, it becomes an open wound that tunnels often times on my chest or on my legs. My parents do not supply the proper medications I need for these, and when asked or mentioned needing the medications, I get told "Get a job". (Which I am also not allowed to have.)
I'm constantly at risk of being kicked out of the house at any time without warning, a couple of months ago I was locked out of the house in regards to being trans and using my chosen name tho thankfully this was after a school play and I had a safe place at the time.
CPS does not listen. The cops do not listen. I cannot speak up about any of these issues even to trusted adults as this causes more issues at home and gets CPS involved.
Cost breakdowns for the month! Any extra fundings will be put towards getting my parrot a new urn (His last one unfortunately broke).
MEDICATIONS: $50 (4x meds for chronic disease (3 prescription + 1 one reg), anxiety/insomnia meds, pain killers)
CAT FOOD: $20
TOTAL: $500
NOT URGENT BUT STILL NEEDED: I will be doing commissions in regards to funding for this stuff, it might take a little bit but I'll do it o7
URN REPLACEMENT: $160 (I know this is expensive but it was the cheapest urn I could find that was made with a decent quality that would work better for traveling with him, as this bird means a lot to me, even in death. If you've known or seen me around within my past year and a half ish on Fedi you'd know how much my beloved Leo was worth to me<3)
(We attempted to fix the urn but it didn't work very well as it proceeded to keep breaking and at this point it's cheaper just to replace it)
LAPTOP FIX: $20
(Keyboard had an incident where one of the keys broke and need to be replaced, this was a rough estimate on the price it should cost from a friend. - The laptop doesn't have a warranty 😹 but I need this for personal use + school + studies)
Not Quite a Ghost 📚 In this middle grade book, the main character simultaneously deals with a spooky presence in her new house, and a confusing new #chronicIllness. The author does a great job portraying some struggles common to #MECFS and #postCovid : the discombobulating nature of symptoms that fluctuate, shifts in friendships when pals don’t believe/judge you, not being believed by doctors, and some very accurate descriptions of #PEM. Plus, the suspense makes it a great audiobook.
@justafrog@StillIRise1963 In my lifetime of seven decades I've learned that it's not possible to gauge someone else's level of pain, and for that reason no-one is in a position to tell another person how to respond to or express pain.
Both emotional and physical pain can be crippling.
I suggest you stop judging others and pay attention to how you live your own life. #chronicPain#ChronicIllness
I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an #advocate? I need help.
The news summary includes articles, videos, research, advocacy, coming events, and more.
⭐️ One highlight: The Time100Health list includes several people working on ME/CFS and Long Covid (Jaime Seltzer, Avindra Nath, Ziyad Al-Aly, Akiko Iwasaki, and others) ⭐️