35
you are viewing a single comment's thread
view the rest of the comments
view the rest of the comments
this post was submitted on 22 Sep 2025
35 points (100.0% liked)
disabled
293 readers
5 users here now
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".
- If posting an image, please write an image description for our blind/low vision comrades. (If doing this is inaccessible to you, DM one of the mods and we will help.)
- 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.
- Follow the Hexbear Code of Conduct.
Let's kick back and have fun!
As of December 2025, there is a Matrix Chat Room that adheres to the same rules as the community. If you want to join, it is an invite only server. Just knock to join. Should you have trouble with the link, you can contact the mods for help: https://matrix.to/#/#Hexbear_Disabled_and_ND:matrix.org
founded 2 years ago
MODERATORS
Replies are better late than never
I'm currently headed off to bed, but I did want to reply you before I do. Mixed growth does sound disconcerting, and I also don't think it's a contaminated sample. While I hope the ultra sound doesn't turn up anything worse, it may shine a light on why the pain and problems persist. I can only speculate as to what your symptoms mean, so I'm not gonna do that because you already have too many unknowns to worry about. I'm keeping my fingers crossed for you, sweetie.Same goes for the mutual aid requests. I hope someone at some point can reach out to you
I wish I could tell you why it has to be so shit, but honestly, I think that's just the baseline for a lot of people, and we're all somehow trying to make the best of it. As to how I'm doing, it could be a lot worse at the moment, but I'm enjoying that I don't have too much to worry about :)
This might sound insane, but I'm hoping the scan does show something, even something bad. At least it would be an explanation, and would mean they could treat it and maybe these symptoms would finally go away. To stay in a state of limbo where I have these symptoms and nothing can be done, is too awful. It's like when they took three and a half years to diagnose my thyroid cancer, I was relived to have an explanation, and prove to everyone I'm not just a hypochondriac.
Anyway the antibiotic sachet they gave me yesterday didn't work and gave me a terrible rash and hives, with the worst diarrhoea I've ever had. The bladder calming tablets did nothing too. When the doctor calls back I will insist on seeing a urologist but she will probably say no again. And the waiting list is probably a year long.
Someone finally came through with a sainsburys gift card that I can hopefully stretch out for 2 weeks but I'll have to keep reposting because if I wait until that has run out and then struggle to get another reply, what will I do? I think mutual aid is almost dead now, it seems like hardly anyone is able to help any more, there are lots of people not getting a reply. I really thought mutual aid would keep me going until my appeal in january, but now it doesn't look like help will keep coming for much longer.
If you have any idea what my symptoms could mean, do tell me because it's something I can ask the doctor about.
I agree, if it shows something, you might finally get answers, but I'd still like for it to be nothing bad. You're already struggling enough, a benign problem would be appreciated
Urologist sounds like the better doc to talk to, I hope they refer you. And I'm glad mutual aid came through with a tiny bit at least, though I agree, it's not looking good these days.
I'm not a medical professional, so the chances of me being wrong are extremely high. What I will say is that the color of your urine and the smell could be very much related to your low kidney function, and the infection in your bladder might stem from that problem as well. It might persist bc the antibiotics that are fighting the infection also impact your kidneys, or at least the ones you mentioned do. And if drinking more water doesn't change anything about the urine, I'm pretty convinced your kidneys need help. (Please don't rely on my assessment, I'm just working with what you told us here, and I don't know if there's something else going on that neither you nor I know.)
Honestly the best scenario for me would be told I have stage 4 cancer. Get some palliative care to ease the pain and have this shitty life over.
I hope there's a better alternative