Was helping my sibling out yesterday with some health insurance stuff, their treatment had been stalled so needed to see their primary care provider but the mf was in a different system all together. Navigating the insurance site to change it was a nightmare so I was coaching them what to say on the phone and I think we got a doctor that exists. Beforehand I was just calling up clinics to confirm if these doctors even were real and it was a pain... pretty sure the insurance site was just using ai to scrape local doctors around here not really checking to see if they were real and that rightly pisses me off. At least the lady on the phone was way more helpful
disabled
Welcome to c/disabled, an anticapitalist community for disabled people/people with disability(s).
What is disability justice? Disability justice is a framework of activism which centers disabled people of multiple intersections. Before participating in in this community, please read the Ten Principles of Disability Justice.
Do I count as disabled/a person with disability(s)? "Disability" is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.
Follow the Rules:
- This comm is open to everyone. However, the megathread is only open to people who self-identify as disabled/a person with disability(s). We center the experiences of disabled people here, and if you are abled we ask that you please respect that.
- Follow the principles of disability justice, as outlined in the link above.
- Zero tolerance for ableism. That includes lateral ableism. Ableism will result in a ban.
- No COVID minimization.
- Do not offer unsoliticed health advice. We do not want to hear about the wonders of exercise or meditation, thank you very much. Additionally, do not moralize health or "healthy choices".
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- Please CW and spoiler tag discussions of ableism.
- When it comes to identify-first vs person-first language, respect the language that people choose for themselves. If someone wants to be referred to as a disabled person, respect that. If someone wants to be referred to as a person with a disability, respect that.
- Try to avoid using ableist language. It is always good to be mindful of the way language has been used to oppress and harm people.
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Let's kick back and have fun!
Health bureaucracy is so fucked up. I don't even know how they get so fucked up or get the idea to use AI for a database like that.
It's just my guess because holy shit some of the doctors made up names were like
I've been focused on my health lately, and I just got out of the hospital (maintenance, not emergency). Even if I don't improve my condition I've at least been improving my reaction to it and stress from it, blahblahblah. That said, I'm basically under house arrest since I'm so goddamn fatigued, and I may have a long trial-and-error period with new medications coming up. I know I'm doing what's best for both my physical and my mental health but it's a major bummer to not be able to be involved in any organizing at a time like this. I hope that I can achieve some sort of stability soon and can pick things back up, even if it's not on the front lines. @Frank@hexbear.net had a great comment here a while back that I'm trying to keep in mind:
Whenever folks express dismay that they can't do cool activism stuff on the front lines i try to remind them that an army marches on it's stomach and there's lots of logistics things that need to be done that don't involve marches and protest camps. Handling phones, making food, taking care of kids, coordinating intelligence, teaching classes and sharing expert knowledge. Many people can fight for a cause in ways that go beyonf the highly visible stereotypes of what protesting looks like but our society makes people think they're useless if they can't play tennis with tear gas cannisters.
They say youth is wasted on the young. Well, I say health is wasted on the healthy. All these people with able bodies and good health, ruining it with junk food or other habits, sitting indoors doomscrolling all day when they could be outside doing activities. I wish to be able bodied again. I want to hike for miles along the coast instead of sitting around frustrated.
Couldn't agree more.
I haven't posted in here before but today I just needed a place to speak my peace and I hope that is alright.
I am 37 years old. I was a Chef for 15 years. My family was poor and when my father stole the savings we had for college I attended Job Corp to get my culinary degree. Seeing that they have now been defunded kind of made me think about where I am and how I was so grateful for that opportunity even if my body has fallen apart.
I have Porphyria, COPD, Heart Failure, Antiphospholipid Syndrome, Lupus, and Pulmonary Arterial Hypertension. Many of these conditions were unknown to me until my state finally expanded medicaid. Since then I have undergone alot of testing and seem to be collecting new diagnoses like Pokemon.
I had filed for Disability 2 years ago and have many conditions that should qualify me according to their own website. Instead NC has given me the run around for years, denied me twice, i filed again and have now been waiting a year with almost no contact from them despite constant calls and messaging and emails.
Last July I became homeless due to my savings running out and being unable to work. I used the last of my money on a car so that I wouldn't be living on the street. I have been driving for Lyft to stay alive and afford my food, gas, and medicines. Constant doctor visits and hospitalizations have made it impossible to keep up with even those lately and my car is now falling apart as well. No AC with the Carolina summer coming up, a failing transmission, and god knows what else that is keeping me from passing inspection now and unable to renew my registration because of it. Even if I could afford it.
The system is literally killing me and Trump and the Republicans have made it somehow even more unforgiving. This month I even lost my food stamps as NC told me I didn't work enough to qualify.
As i type this I sit here feeling what I think is the beginning of blood clots forming again in my lung and leg and I don't know if I even want to go to the hospital again because I am not seeing a point.
I only keep going for my Partner, my Mother, and my little brother but I really don't feel anything for me anymore. I am so tired and don't see the end of this tunnel like I used to. All i see is the end of the month approaching while i am hospitalized and unable to work enough to pay for the impossible bills that have accrued from Disability constantly delaying my approval.
I see me, on the street because my car is unable to be registered, unable to work to afford my medicines, and still dying here either way.
Sorry for the downer comment but I needed somewhere to vent and I am sure many of you have seen similar struggles and I don't want to feel so alone.
My heart goes out to you, comrade, and I hope despite everything that there's a light at the end of your tunnel. I'm sorry it has been such a hard road for you to walk, and I can't imagine how difficult it must have been / must be right now.
Just wanted to put it out there that you're always welcome here, and I'm so sorry you're being subjected to such unnecessary cruelty. I'm not sure what else to say, other than we're here with you comrade.
I'm back to be able to wear shoes comfortably at last. My surgical wounds have pretty much healed and aren't painful any more. The black cloud is my bloody tendon, still inflamed. But at least I'm able to walk around outside for about 5 minutes a time, three times a day. Better than being trapped indoors permanently, but still frustrating. I am so desperate to be able to walk more. But it's thanks to this community helping me get the things I needed that my surgeries are finally over and healed, and my landlady's car is usable again and for that I couldn't be more thankful.
Glad to hear you're back on your feet comrade, and that you got some assistance with the car. Hopefully things will continue in a better direction for ya.
I'm so happy to hear you got better love. It's never enough, but this is such big progress that I just squealed when I read it
Thank you. And I've discovered something else today that might help me. I've been trying to go vegan for ages, but I've developed so many food intolerances that it's been really difficult. I cut out all red meat decades ago, and have developed an intolerance to eggs, so they're gone. But I've still been eating chicken and fish and I really wanted to stop, especially the chicken because I don't want to contribute to factory farming. But whenever I try and replace it with extra vegetables, I get gastric issues. Today I found out about FODMAPs and it turns out I've been eating high-FODMAP veggies like mushrooms and broccoli. If I switch to low-FODMAP ones like carrots and courgettes I might be able to increase my veg intake without getting sicker. And I've been putting my food intake into cron o meter and I think I might just have to give up trying to be totally vegan and accept eating a bit of fish each day to meet my nutrient requirements. At least it's not factory farmed, I suppose. So I'm going to swap chicken for fish and change the veg I'm eating and see if I feel any better. Of course, there are mercury concerns with fish but apparently white fish is OK every day. Sainsburys does bags of frozen white fish quite cheap, I will try those.
I feel a renewed determination to try and improve my health because I've found a "hobby" (not the right word but can't think of a better one) that I want to get into. Many years ago I read The Mists of Avalon and absolutely loved it. It's about Pagan priestesses living on the isle of Avalon together, along with Merlin the Druid, learning magic. Ever since then, I have really wanted to live like that but I thought there was no chance. But I recently found out that there has been a Druid revival and there's a thing called The Order of Bards, Ovates and Druids, and you can literally do a course to become a Druid and join the organisation. I am really keen on this idea, and for the first time in ages I have a bit of hope that I might be able to improve my life at least a little. At least to no longer feel relentless, crushing hopelessness and misery with nothing in my future but su1c1d£.
My mood always goes up and down drastically, I sometimes find myself keen on an idea but then difficulties arise with it or I end up too unwell to go through with it, so maybe I will give up on this but right now I feel really keen on trying to improve my health as much as possible and if I win my benefit appeal I will use some of the backpay to do the Druid course. If only my tendon would heal up and I could walk outside for more than 5 minutes at a time that would be a huge help too.
EDIT: No, I can't do it. I need to find a way to be vegan. Everything inside me is telling me to.
Sorry I've been afk lately. As I said in a comment below I am ok with adding new mods and having volunteers do the megas. I don't thnk the other still active mods would mind but I don't wanna make that decision solo. I'm gonna try to message them in the mod chat about it.
For me, the reason I'm been pretty quiet on here lately is because I was trying to get my PSL chapter going, then got involved in an anarchist collective and we are working on a few Panthers inspired projects. Last week we spent a lot of time trying our best to provide food, water, medical aid and transportation to a local unhoused encampment since the city decided they wanted to put all the unhoused into a concentration camp. Trying to not get to into it, they used tax money to proved essentially tin cans for the homeless to live in but there are only spots for 50 people and we have well over 100. The encampment got torn down and now we don't have any way to communicate with probably 75% of them and we are trying to figure out next steps. The city funded camp only has room for 50 but also does not let anyone stay there during the day, doesn't allow safe use sites as a safety net, and also only allows a small amount of personal belonging. One couple we were helping had 3 dogs and they only let them take 2. In the end, they also arrested one of them over ancient charges from her past. Essentially the whole thing is an excuse for law enforcement to use violence against the unhoused.
We have a few other things we are working on but that sort of took center stage. ACAB. Humans deserve dignity. Housing and food is a human right and should not be treated as a commodity.
You're appreciated and it's awesome that you're helping others IRL, even when it's an uphill battle
Received a 40k hospital bill from my time in the ICU today because Medicaid didn't want to cover it. I love America so much
Disturbing. I'm so sorry. Are you able to fight the rejection?
Idk anything about how to do that, but after the CEO got shot, I read how people more often receive previously rejected coverage the more repeatedly and insistently they fight with more requests. Because Anthem insurance keeps track of who will cave upon rejection amd who's not worth the time trying to keep rejecting. (Anthem is who privatized Medicaid, right?)
In the meantime, maybe you can set up a mutual aid fund about this.
this month marks a year since i cut out my abusive ex and started getting treatment for depression/anxiety, and im pretty proud of how far i've come with that, so that's pretty cool
Well done!
I am very happy about the new mega, thank you
My surgery was quite the ordeal, and I'm still recovering, but I honestly regret going through with it. I just wanna curl up and die. There're moments when I don't feel any pain and think it's fine, and then I just try to move even the tiniest bit and the wound explodes with pain. My doctor told me this was to be expected, but honestly, I don't think it was necessary to do it. Anyway, suffering and recovering over here, hope your week is treating you better.
Sending hugs and a speedy recovery comrade, I'm catching up but my goodness have you been through it. Hoping you can get some good rest and maybe sleep through the worst of it.
i do not like that unemployment has become a meme thing to make fun of people for lately
It sucks to see people 'punching down' like that, even in memes
I'm just gonna go live in an anarchist commune.
I've basically had free reign to contribute to this group I am organizing with these last 2 days and it's felt so meaningful and impactful. I'm working on a website for a food co-op we are starting, and also working on helping set up a sponsored free breakfast program and it's been so rewarding. I feel like I'm being seen for my skills I'm able to contribute and also being treated as a human. They are giving me feedback and actual meaningful praise that doesn't feel like corpo jargon bullshit. I really hope this co-op takes off and we can create enough surplus that I can possibly quit my job and work for this full time. I'm not sure how NGO's and non-profits manage all that. I might bring it up in our meeting tomorrow evening.
In any case, these last 2 days have been amazing for my mental health and now I gotta go back to my regular job. I'm trying to stay positive about it though.
I wanted to say that all your kind comments as well as the conversations with all of you really picked up my spirits these last few days. I'm usually a very negative person when it comes down to me, and I tend to lash out at people around me when I'm feeling scared or in pain, often in immensely cruel ways. I had such a moment just this week, and was thinking of how I'm no better than my mother, but then you lot chimed in and really changed my perspective. I'm grateful to all of you, those who needed help as much as those who gave it. I'm just as conflicted as everybody else, I have my horrible moments, but I can also be a good person. So, ahm, thanks comrades, for making me feel human again.
Med students are having chatgpt do their ethics exams. I don't have a comment. Just a statement.
what do you call someone who cheated their way to a pass at med school?
doctor
I am so sick of having to deal with prescriptions. This month there were more issues. I got my script and struggled to even find a pharmacy that could fulfil it. It took days to find a pharmacy that had the exact thyroid and cancer meds that I need. And it was a pharmacy further away than usual, my landlady drove me there to get it but it pissed her off that she had to help me with yet another thing. Another bother is that i asked the GP surgery - even wrote them a letter asking - that they put my thyroid and cancer meds on a separate script from the other items. But they ignored this and put all the items together. The pharmacy didn't have the other items in stock. This means we have to go back there another day to collect the other things. Why can't the damn GP surgery just do as I ask for once?
And I'm struggling to stay in laundry disinfectant. Because I'm immunocompromised and riddled with infections, I have to wash my laundry in medical grade disinfectant. My skin infections are so bad and so persistent that I've been hospitalised because of them on multiple occasions and of course had multiple surgeries on my foot infections. The laundry disinfectant helps a lot. But it's not provided on the NHS, that's another thing I have to pay for myself. No money of course. I've made about 3 mutual aid posts and two lemmy posts asking for help with this.
And my period has started just 2 weeks after the last one.
I'm so tired, why does everything always have to be a struggle?
Might be a bit redundant, but, as we head into the weekend again I want you all to remember that you matter, you are loved, and you belong! Thank you for being such an awesome community and always lovin on one another; it's lovely to witness. Ya'll inspire this awkward gremlin on the other side of the screen.
The disabled comm could maybe use some new mods. Only roux and AshenWolf have posted lately (both 2 days ago). khizuo posted 24 days ago, hexbee 1 month ago, and ReadFanon 4 months ago (and Ivysaur is a deleted account). Some of them may be online, just not posting. But if they aren't, we will be down to only Roux once AshenWolf leaves.
Taking a couple ideas from the trans comm could be beneficial, already copied the fortnightly posting of em_poc mega.
- Modding more people to distribute load since neurospicy people burnout faster.
- Sign-ups for megas so people who anticipate having spoons can volunteer, also since scheduling and deadlines can help some neurospicy conditions.
I've been reporting companies to the Powers That Be for discriminatory practices during interviews that violate the Civil Rights Act and ADEA and actually had some success in having them investigated with their posts flagged/removed on online job boards. Small victories.
Inside me there are two wolves. One wants a nap, the other one has drunk so much garbage my blood type is caffeine.
gingerbrat has taken up the mantle of being a super-supporter of everyone, and that gives me peace ❤️❤️❤️
🫂 thank you for being the kind light that everyone needs
I'm sorry I'm not here to echo that kindness constantly, but all of you, please know that I do think of you and do wish endless blessings upon all of you ❤️
I should be doing chores but I'm completely , just laying in bed cuddling
One of my neighbours is clearly not well, so she sometimes just screams for several minutes at a time. She sometimes repeats this in intervals over an hour or so. She's not in distress and she neither wants nor needs help. She just screams. It's not that big a deal except when she does it when I'm trying to sleep. She's loud enough that earplugs don't really solve the issue.
I don't really know what to do here. I'm thinking of trying to sound proof my apartment but that feels a bit silly. I could also tell her to duck into her closet when she needs to scream, but I don't know her well.
i did something really really hard yesterday, had a meltdown and threw up from the stress, but i did it. and there seems to be this expectation from the people around me, that cos i did it once i can do it again, indefinitely. but it takes me like, a week to recover from this sorta thing, or else i get super burnt out
like in highschool i would throw up from stress every morning and that didn't stop until i started skipping 50% of my classes
i was not built for life i think
sleepy. I would like to be less sleepy. Please fix this.
what are support systems, what is identity, mention of suicide
I would (half-jokingly) be interested in a case study about friendship and support systems and what kinds of correlations there are and what factors contribute to a support system forming.
I think my brain is a little cooked in that I really don't see a way to meet new people and make friends, at least in my current ways of approaching things. I have a strong tendency to show up to things, look around, and if someone doesn't talk to me or something doesn't catch my interest, I end up leaving, because I just feel weird standing there thinking to myself, "should I talk to someone, who should I talk to, how do I decide" Like showing up to things by myself feels useless, I'm completely on rails.
I have yet to get to a Pride event this year. I consistently have conflicts or am burnt out. But that's I guess my only chance to meet people remotely like me. Hell, I'd be posting this in the trans comm, but posting there really spikes my rejection sensitivity. I don't have the energy to do that to myself or ruin the community for other queers.
It's especially tough because I came out to my pre-COVID friends online and they liked the post and went on with life. Selfishly, I thought at least one person might want to reconnect, or at least say "so that's where you've been!"
I thought about killing myself. I felt like I was already dead. It's not like anyone was reaching out to me anyway.
And now, if I say anything, I'm bringing up old shit. I'm being dramatic.
I don't know what I consider a support system, but off the cuff, I'd say I don't really have one. I have my family, who I can talk to sometimes. But nobody is experiencing this in real time with me. Nobody checks in on me, nobody reaches out if I go quiet.
Maybe deleting my old account was a form of self-rejection. But also, nobody in the trans mega cared when I did post. People invalidated my feelings at times. People gatekept. I felt like I had to prove that I was dysphoric in order to be accepted. That made me more dysphoric.
I just want to find a space where my gender is actively being affirmed, not just "oh I accept you regardless" but like actually having girly conversations and doing girly things. And calling each other girly nicknames, and doing our hair and makeup and going shopping. Or something.
I´m listening back to recordings of my patient interactions for my notes, and wondering aloud why none of my patients have punched me square in the face. My voice is so fucking annoying.
we all hate it own voices right? not that they're bad but more that they're wrong. they aren't what we hear normally (from inside our skulls) so the less rich sound throws us off
Did you help your patients as best as you could? Because I'm sure they don't mind the sound of your voice as long as you help them
how can I cope with being hopeless, I don't want to explain my situation, I don't want to be lectured about how I can get out of my situation, I just want to cope without being addicted to some substance.