happy disability pride month to those who didn’t make it, for whatever reason. you will not be forgotten.
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happy disability pride month to those who didn’t make it, for whatever reason. you will not be forgotten.
non disabled people will be like “PCPs are heroes!!” meanwhile my pcp hasn’t responded to me in over two weeks asking why she didn’t tell me i was rejected from palliative care when the people at palliative care told me it was her responsibility to tell me. or the time she waited two and a half weeks to respond to me about how dehydrated i am and how badly it’s affecting my quality of life only to tell me to try drinking broth. or the time she got mad at me for making a virtual appointment even though she knows i have severe ME/CFS. or the time she-
SSA’s ONLINE APPLICATION is only available at certain hours?? thats so fucking egregious. its a fucking online form.
i wake up hungry. first i have to take my levothyroxine and wait 30 minutes because you have to take it alone on an empty stomach. then i can take my ldn, omeprazole, and linzess and wait another 30 minutes before i can actually eat. it’s so annoying.
our bedroom ac deciding to stop working on one of the hottest days in this heat wave 😭😭😭 we’ve been trying to troubleshoot it the whole day and i’m hoping we’re getting closer to solving the problem
i had some really bad bladder pain last night, woke up this morning and had a *lot* of bladder lining pieces in my urine 🙃 i love interstitial cystitis
this past six months have been fucking awful. subclade K superflu -> colonoscopy and cancer scare -> cauda equina syndrome -> emergent surgery -> conditions worsened from all of that -> rent gets raised $200 a month, begin panicking about housing -> might have to move into my abusive dad’s very isolated house -> become long term dehydrated, kidneys and liver are affected -> dice (cat) develops megacolon and we’re told he’s going to need surgery -> urinary retention gets bad enough that i’m taught intermittent catheterizing -> dash (cat) needs surgery for three tumors, thankfully benign -> in lots of extra debt from vet bills -> gets a uti that turned into pyelonephritis -> multiple doctors tell me they don’t know how to help me -> get denied palliative care
then in the background, my aunt is in the late stages of early onset alzheimers, her caregiver just retired, we’ve been having the hardest time getting her on medicare so we can get her round the clock care, she’s deteriorated so much. we can’t afford to put her in memory care even though she needs it so bad. my mother in law ALSO is dying from early onset Alzheimers, we’re struggling to figure out a way to get down there to say goodbye but i don’t think i can handle a cross country flight. its putting so much strain on the family, and its heartbreaking to see my FIL watch the love of his life turn into someone he doesn’t recognize. they’re both in their 50s.
all while my partner and i are stuck in the same four walls in a horribly messy room because neither of us can clean it and my mom (caregiver) won’t help us.
six months. that’s all its been. do other families go through this much bullshit at once or are my families just cursed.
yet another week goes by that my pcp doesn’t respond to me