Hello everyone! Don’t have a lot to say, finally got around to making the new mega.
As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:
“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.
Mask up, love one another, and stay alive for one more week.
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.
Thanks, I hope so. There’s a new hobby I want to partake in that i can do from home but due to my medical issues I just don’t have the mental energy. I’ve been feeling so tired. Also to get started it would cost money which I don’t have, and I already need to make a food aid post later today (when more people might see it). I am not going to make an aid post for a hobby, but f I win my benefit appeal and get some more energy I am going to do it though.
Yay to hobbies, no matter the level of participation! I saw your other reply about diet and stuff as well, sounds like you’re doing a lot, it’s awesome to see. Hope you can keep those spoons flowing and you win your appeal, you deserve some good news and positive changes.
Thank you.
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.
- Congrats! I’m housebound most days of the week, and that’s with the best treatment during my the time I’ve been disabled so far. That shit can be worse than mere quarantining. It’s so good to breathe and move around outside with different scenery. Seeing birds without a glass pane separating you both. Maybe petting a passing dog. It’s very good to be walking outside.
I hope that tendon calms down. I wonder if antiinfamotory meals would help you. Wishing you all the strength. You sound courageously motivated.
Anti inflammatory meals? Like what? I’m interested in trying whatever it takes, but due to my cancer treatment I have developed a lot of food intolerances.
*You sound courageously motivated. * Thanks, but I am not at all. I wish i was. I actually feel on the brink of su1c1d£ all the time.
Thats when the will to live becomes most courageous. I can get ideations by staying inside all the time too and im sorry staying in has been sucking such dire ass for you.
About antiinflammtory meals, I’m not really sure, but someone told me they make them for a family member who deals with chronic inflammation. Highly fatty cuts of mammal-specied meat can trigger inflammation for some. Lower-fat cuts can be fine. On the other hand, highly fatty fish(probably since its omega 3’s) reduces it. Leafy veggies and berries and some nuts reduce it.
It’s not just pertaining to food, but the spices you use. Higher salt intake can increase inflammation so you might try low sodium soy sauce for example. Some herbs can lower inflammation, like turmeric. So you could have meals that use a heavier amount of such spices.
Apparently learning to make antiinflamatory meals is a skill you build. If you feel rewarded by cooking it might help you fare a darkly emotional day better. While it might not make it all better, keep in mind it’s the little things that add up, and stay open for little bits of hope that it will at least be somewhat better.
Thanks for the tips. Yeah I think I’m going to have to do some trial and error. So many foods aggravate my medical conditions. The endocrinologist said it’s a side effect of my cancer treatment. Sometimes I wonder if this is a virtual reality simulation and we’re here to learn what mistakes not to make in the real world. I imagine waking up perfectly healthy, knowing exactly what I’m supposed to do and this life just becomes a bad dream.
Hopefully you or someone shopping for you builds food knowledge that leads to a little relief soon. And what a nightmare, I’d disbelieve my reality *too. I’m really sorry you have cancer. Bestest of luck on your treatment.
Thanks. The cancer is technically gone but I have to continue the treatment for life to stop it coming back. Also it was thyroid so I have to take thyroxine for life and the side effects are what has ruined my life.
Congrats on getting rid of the cancer. Is thyroxine your only option available?
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
Thanks, comrade. It’s been really nice with this collective because there are about 10 of us to spread the load and the group is getting really tight.
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.
That is insane…sorry you’re having to deal with this and hope you’re holding up ok
Ouch. What happens if someone can’t pay it?
My credit takes a massive hit, but that’s pretty much it. Can kiss my opportunity of getting out of sober living good-bye though
Why?
Need credit to be a renter, don’t need credit to be in sober living
In the grim dark future of western civilization, there is only medical debt
Worst part about support groups is that often everyone else ends up getting better except me, then they move on
You’re the cure. Holy shit.
Cause boys don’t cry
booooys don’t cry
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!
Proud of you too, congrats on the big milestone!
thank you!!
I’m proud of you too
thank you!!
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’m so happy to hear that! You finally got to do something actually meaningful, this is such big and beautiful news
(P.S.: Also, if you can, take me with you, I wanna help too.)
If the empire falls, I’m scooping up all the leftists and we are gonna build a place we can all live and thrive together.
Sign me up
We need people that can grow food. We need people who can build housing. We need teachers. We need healthcare folks. We need tech people. We got room for you!
these tariffs are killing us
we are already disabled and broke and now the things we need to be slightly less disabled cost like twice as much 
woofThey’re really out here trying to deny us every little thing aren’t they?
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
where? i ain’t seen it but i admit i deliberately avoid most media social n otherwise
i see it pretty much everywhere, but especially in youtube comments
Now that you mention it, I’ve seen that too, it’s been cropping up very recently. I don’t get it, tbh, but then again, punching down is easy, so of course people hop on.
I want to think that it’s children doing this and they are yet to discover the truth about jobs.
My alternative is usually “go outside”. despite porky’s wishes, I don’t need to be a nepo baby to go outside just yet.
ya, “go outside” or “log off” are the same kinda idea but without punching down at ppl. but ppl like punching down at ppl so ig i shouldn’t be surprised.
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.
Thank you, comrade
and take it slow, don’t overload yourself pleaseNo worries, love. It’s nice to be in contact with y’all again in this cozy lil space on the internet
Always happy to have you, and thank you
Hope the healing goes well and is fast.
Thank you love, I appreciate you
The feeling is mutual!
Hi everyone, I’m Onandrah
I’m a proud trans woman and disabled refugee currently living in a settlement camp in . I fled Uganda after the passing of the anti-gay bill…it became too dangerous for someone like me to live freely and safely. Now, I’m doing my best to survive and hold on to hope even in very difficult conditions.
I also live with HIV, which adds another layer to my daily struggles especially with limited access to healthcare and support. Being in a space like this, where we can speak openly and support one another, means a lot.
Sometimes life feels like too much, but I’m still here. And if you’re still here too, I want you to know you’re not alone. I see you. I’m rooting for all of us.
Sending love and strength from Gorom Camp in South Sudan. Onandrah
Hi Onandrah, we’re rooting for you too! Thank you for your kind words. Sending peace and solidarity your way, comrade. Stay safe, and know you are loved and you are beautiful.
Thank you for your kind and supportive words. Being a trans refugee is very hard…every day is a struggle for safety and basic needs. Your solidarity means the world to me and gives me strength to keep going.
Stay safe, and thank you for standing with me meanwhile how is it going??..
Hoping you can find peace in the future, comrade, and that you can get the care and necessities you need. It’s goin alright on my end, I appreciate you asking. Mostly job hunting and hanging out here on hexbear these days when IRL stuff is quiet. How are you doing this week?
My heart goes out to you, love, and I thank you for your words of hope and kindness
I hope you can get to a safe place with better healthcare soon, so you don’t have to live in fear. Take good care of yourself and never hesitate to contact us here in the mega or via private messages.
Thank you so much for your kind words and support. It really means a lot to be seen, especially in such hard times. I’m doing my best to survive here in the camp as a trans refugee with limited access to healthcare. If you know of any groups or people who support cases like mine, I’d be deeply grateful to connect. Thank you again for being here.
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?
First things first:
Now, as to the rest. I remember that a while ago, I asked my doctor about this prescription stuff too, and they told me it’s apparently mandatory to issue as few prescription sheets as possible. Don’t know who makes the rules, but it could be a simple case of “Your GP has to follow a stupid rule” and not a “I dislike this patient and am gonna make their life more difficult”. At least I hope that’s the case here too. If not, fuck the GP.
I sympathize with the irregular period. The stress of the last few days might have something to do with it, so I hope this’ll be a one time only event. Feel hugged, love.
I also hope someone comes through with the laundry disinfectant, can’t be that you get another infection because of this one thing.
If they have to issue as few prescription sheets as possible, I wish they would just say so instead of just ignoring my request. But it makes it impossible for me to get my prescriptions, for instance one place has the 100mg thyroxine I need. Another place has the 25mg thyroxine. Another place has the 50mg thyroxine. Another place has the other meds. I can’t get them all in one place and most of them can’t even order the items I need in. So for instance today I took a sheet to the only chemist in town who has a type of thyroxine I need, I got the thyroxine but there were other items on the script they can’t get, so I guess I just go without those items now. Surely it’s better to issue a few extra sheets rather than let me go without meds. I’m so tired of dealing with it every month. Also my landlady has to drive me from chemist to chemist and complains about it.
I’m writing a letter to the GP to ask for 2 month (or loner) prescriptions instead of one month so i am not constantly dealing with this. I’ll see what they say.
Anyway, thanks for listening.
Always, and good luck, love
I went to my posts surgery checkup and according to my doctor, it’s healing slowly, but that’s to be expected with my medical history. She was happy to see that I got through the worst of the pain and am on the mend. However, she was highly confused when she realized my surgical stitches had already dissolved completely, even though the wound isn’t done healing. Apparently, I am, was, and probably will be a freak of nature all my life, and I quite enjoy the “surprising the doctors” energy I have. Still can’t sit, but that’ll get better soon.
Glad to hear the healing is going OK, hope you can sit soon!
Thank you love
Hope you’re doing okay too these days. How’s your walking working out so far?
Not anywhere near as well as I would like. I can wear shoes and walk for about 5 or so mins. So shopping is OK now, my landlady drives me, parks outside and i go in and get a few things (my landlady won’t go in to shops since covid). Although carrying any weight, like more than a few things in a shopping bag, at all flares the achilles up again. Walking for more than about 5 mins flares it up too. My landlady has a tiny dog who i used to walk but now all we can do is drive him to the park, walk up and down for 5 minutes then drive home. So apart from these short trips I am still stuck indoors. The physio said if the achilles isn’t better in another 2 months, go back. It’s been about a month since that appointment and it’s no better. Even if it does get better there is always a high risk of it going again. It’s all because of my stroke, my left side is so weak now doing anything makes it get injured. The achilles injury happened just from carrying a shopping bag a short distance. I’ve previously torn all the muscles in my right arm just from lifting a small object. Constant plantar fasciitis in the left foot and a whole list of other injuries because of this damn stroke. The neurophysio said the3re isn’t any more improvement to be expected and I just have to learn to live with it. I just want to be able to hike again. Having issues with my thyroid meds too.
This sucks so much, I’m sorry you’re suffering still, honey
I know it’s not much, but the fact you can walk at all is still impressive, especially given the rest of the issues you mention. I hope that the tendon will get better, and that you can walk pain free for more than five minutes. Out of curiosity, is there a way to improve your left side slowly again? Like, some way to strengthen muscles and tendons to give you back your mobility? And if so, is it affordable/available?
Nooo not the thyroid meds again ._. Is it too much or too little or something altogether different?
I’ve been having physiotherapy for several years now, and seen the neurophysio, and the podiatrist has been dealing with it too because these issues are concentrated in my feet a lot. It just isn’t going to improve any more now. It was on the NHS so it took ages to get the first appointment, by which time the damage was done, and the appointments have been spaced out far apart. Maybe if I’d gotten better help i might have made a better recovery but it’s too late now.
The thyroid issue will never go away either. It’s just impossible to keep a steady level. After the endo lowered the dose it got too low, so it was raised again, now I have symptoms from it being too high. It will never stop.
It breaks my heart to read again that it was too little too late to actually help.
I wish there was something I could do to improve all of this for you, love.Having you as a friend and being able to talk about it does help.
Wow, I actually remember when you first mentioned the surgery…so reading this really made me smile. You’ve been through so much, and I love how you still manage to keep such a good spirit. That “freak of nature” line got me but honestly, it suits you. Keep surprising those doctors! I’m proud of you, and I hope you’re able to sit comfortably soon. You deserve all the healing.
I’m happy to hear my humor made you smile/laugh :) and I hope so too, comrade, thank you
Good to hear you’re on the mend!
Thank you
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.
We love our awkward little Gremlin
aww thanks
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
