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 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.
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.
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
woof
They’re really out here trying to deny us every little thing aren’t they?
Today I received an important update on my psychiatric diagnosis. I probably have autism too, aside from schizophrenia. I just need to complete a questionnaire to confirm the diagnosis.
Hopefully the diagnosis can get you the accommodations and any additional help you need, comrade
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
I finally fell asleep about two hours after I wrote the last post. While they were fighting I was on my phone scrolling (and posting) wondering if I should intervene. Anyway things cleared up. I got my sleep. I read about Chinese history and boned up on anatomy (hehehe).
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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
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.
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 screaming neighbour got interrupted by another neighbour who started slamming om her door screaming at her. Violence has been threatened, stuff has been thrown in both directions.
I am not equipped for this.I forgot to eat all day so now I’m hungry but it’s too late to eat. This is a conundrum. I should eat smarter
I’m gonna have some crackers. Sadly no hummus since no food processor, sad times.
So relatable, hope you get some good sleep…oh no just saw your other post. Hope everything settled down ok
I’m tired
I’ve started falling asleep in the afternoons again, which I hate. I feel horrid and groggy. I don’t know what’s started it again, whether it’s an issue with my thyroxine or poor sleep. It’s awful being tired all the time, and people are like “What have you got to be tired about?”
“What have you got to be tired about?”
“well for one i have to field a lot of tiresome questions”
Maybe I’ll try that next time.
Yeah same here, afternoons have become the worst. The “what have you got to be tired about” is so gross, too. We could just gesture broadly at the stress of everything as a reason without even going into the actual disabilities that aren’t always visible. Wishing you some good rest soon, comrade.
Thanks, you too.
Me too. I’ll have a nap for the both of us, you should be feeling more awake soon
May your dreams be peaceful and your rest rejuvenating
And yours too love
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
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
Sleve Mcdichael and Todd Bonzalez?
I talked to a tamil person in the healthcare industry once who told me she shortens her name for white people because they can’t pronounce her actual name, and once she had to get a nametag and it just arbitrarily cut off half her name. Like her name on the tag just ended in the middle of the name.
Shit was like Dr Mating, Narwhals I think that for real was take
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’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.
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’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?