u/jeanjacquesroushoe

Howdy, I am 25 and a transmasc person. I am 5’3 and yesterday I weighed in at 210lbs which is definitely not ok. I used to be really good at keeping a clean diet and worked out constantly. Now, I’m glad if I even made it out to my doctors appointments and back. I am currently in a friends living room with myself and my cat. I want to focus on being nice to my body instead of hating it.

All my health issues are related to a genetic connective tissue disorder I have (yes, even the spinal cord injury). Last August, it caused me to develop cauda equina syndrome randomly (herniated disc severs spinal cord) and that changed my life entirely. Suddenly I was housebound, mostly bed bound and dependent on others. As if that wasn’t good enough, I had just about every complication and it triggered an autonomic disorder I have to worsen making even sitting up in my wheelchair hard. It only got worse and I was diagnosed with non-epileptic seizures induced by my autonomic disorder. On top of that, as you might imagine it made my already treatment resistant depression worse and so my meds have been upped even more and my motivation hasn’t been there at all.

Needless to say, my energy has gone into just surviving honestly and that left me with a lot of lazy eating whatever I could afford to and often overeating junk as you might conclude. I also have only just now got back into PT after my stint of new seizures developing so my activity has been VERY limited as joints are not very sturdy.

I hate the way my body looks and I hate how I feel after I eat. I also feel like I am looking for something to control in my out of control life and might as well control something productively. I want to at least be able to say if nothing else that my weight is in a healthy enough range that it doesn’t contribute to furthering my chronic pain or interfere with my success in PT as I get back into it.

As of right now, I’m still housebound mostly except doctors appointments. It’s not my choice as I am just couch surfing and staying with a friend for a while as I apply for disability. I’m working on trying to get more nutritious food delivered if possible but it’s very hard for a young adult who’s disabled without SSDI (yet) to get any help let alone at home services.

I know this is one of those things that when you’re surviving you just don’t feel like the capacity is there to make change but I want to prove myself wrong. Anyways, day one ☝️.

Hello all, so like many of us I have neurogenic bladder. For me, I have very extreme retention like I have had 1000+ccs of urine in my bladder pulled out when I didn’t have single use caths yet (hospital is a big one that books out for months in almost every department but is worth the wait usually).

Since then I’ve had a myriad of issues with cathing and my bladder being a bitch. So, my urologist and I discussed doing the Mitrofanoff procedure as the least invasive but most permanent and effective treatment.

I was curious, have others had this procedure? Can you tell me what it’s been like for you? Pros and cons and experience with the procedure itself?

If you were offered this procedure and didn’t go forward with it or opted into another procedure, why? Are there other treatments you’ve tried that have worked for you?

I just want to learn as much as possible before I commit to it because I know this is a big deal to do. Thanks!

Hey y’all. I am on metoprolol and guanfacine which both have been a god-send compared to where I started (I jump about 40-50 bpm compared to 80-100bpm which isn’t great but feels less horrible).

Long story short, I had emergency spine surgery that left me with a spinal cord injury causing partial paralysis and a host of other issues including triggering ME/CFS and my POTS worsening partially definitely because I couldn’t move much for months. In January, I started having seizures and after a lot of advocacy and tears, it was determined my POTS was causing the seizures (not convulsive syncope, non-epileptic seizures). My seizures seem to be worsened by exhaustion of any form so too much light triggers the ME which will trigger my POTS and surprise seizures!

My question is for folks who have non-epileptic seizures and especially if you have fatigue as a trigger or overlapping ME/cfs how are we coping?? Do you have any tips on pacing or things that work for you?

I’m concerned that since this is my first summer with these seizures I’m afraid my body will fatigue even more easily and I am just gonna be sol…any vets in the house or even folks in a similar boat?

Cauda Equina Syndrome is a VERY rare complication that can happen with disc herniations in your back especially in the lumbar. It usually happens with a trauma but can happen suddenly and the herniated disc basically gets pushed into the spinal cord by the spine.

For context, I have Ehlers Danlos Syndrome as well so I am more prone to issues happening suddenly so don’t get scared by this if you have a disc herniation. Almost a year ago my chronic back pain went from annoying to absolutely unbearable very suddenly. I tried to ride it out but ended up driving myself (stupid in retrospect) to the ER and was given every drug under the sun.

Was told my herniated disc had doubled in size and would need surgery but it wasn’t emergent. Ended up coming back with loss of function of my left leg. ER doctor practically tripped over himself getting to the spine team. Same people so they said just follow up with outpatient. ER doc was pissed and gave me a lot of percs to get me through the next few days
I couldn’t sleep or eat from the pain. The meds barely touched the pain.

Third time I wasn’t able to pee suddenly and was retaining almost 1000cc and lost more sensations. I had a new MRI done and suddenly I was being admitted and prepared for surgery and found somehow the herniation got so much worse in a matter of a few days. The relief after the surgery was insane but the aftermath of it all has been a lot. So AMA!

TW: discussion of suicidal ideation.

So I have been in and out of psych hospitals for years because it feels like my depression and stuff goes from 0 to 100. I am told that I need to look for warning signs but I genuinely don’t see them. My meltdowns happen frequently due to sensory issues and emotional regulation when things aren’t severe. So I don’t understand how to recognize the warning signs when it feels like the only difference is how bad the emotion becomes and it not going away no matter what I do suddenly. For me, suicidal truly becomes intense and dangerous and mixes with my meltdowns which also makes it dangerous. I don’t know how to recognize when things are bad before they get bad when I don’t feel it differently until it’s already super bad. Any one relate or have advice?

Long story short I have become severely disabled over the past few years, can't work full time unless I want to end up back in the hospital again, barely maintaining a part time job while applying for disability. My state doesn't have any safety net programs for adults with non-intellectual/developmental disabilities without state insurance which they only provide to the elderly, disabled (on SSI/SSDI), pregnant, and children. No non-profit programs will take me until I have disability either. It doesn't help that even tho I only work 15 hours a week, I'm expected to do the same as I did at 40 and I can't get a job anywhere else bc this place is already sacrificing a lot for me as they let me WFH and work with me when I suddenly end up in the hospital for weeks on end.

I'm currently couchsurfing and staying at a friend's place for hopefully a few more months. The problem is I am always doing something wrong of a chore not done right or a fork goes missing and suddenly it's my fault and they dont tell me when they feel like I've done something wrong until they are at their boiling point no matter how much i beg for clear communication. I try my best but i cant read minds.I am in one of the living rooms so its not like i can shut the door to cry when I get overwhelmed either. NOTE: i am incredibly grateful for ththemed love them and wouldnt be alive without them 1000%, I just miss having my own freedoms and ability to just be in a home of my own again especially since i have PTSD and being around others even if I love them makes me on edge. i just hate feeling afraid 24/7.

I also have a new issue of having a car I can barely afford my payments on and that I can't drive bc I developed seizures is unusable now which I just found out when I was trying to go down the road with it to meet with some potential buyers. It was already used and has a good bit of miles on it so it's not exactly worth a lot. So now, because I have no money really, I can't refinance and I can't keep the car bc it's sitting in a monitored lot barely in a parking space (the tow truck guy tried but it doesn't even slightly turn on to put into neutral).

There are just so many things I need to do that I wouldve done independently or with a little help a couple years ago but now would have to completely rely on others for which is so terrifying and difficult. The simple task of moving storage units to a smaller cheaper one is not a multi-month ordeal of begging and trying to get things scheduled right. That feels like every task now though; something that used to take 5 minutes takes days or weeks.

All of this is making "stress management" techniques feel like firing a nerf gun at the hulk. My therapist and caseworker (v lucky to have for free) have both agreed that you can't breathing exercises your way through housing loss and disability development. I just can't seem to get more than 5 minutes where I feel like I have it together and can work on truly future planning or just feel the tension in my jaw release.

How the actual fuck do you cope with stress when you don't have money, independence, or stability????

I don't know if this is the right place but I currently have a loan on a 2009 Ford Focus through Bridgecrest. I got the car from Carvana a few years ago and its been great. At that time, I had my own apartment and worked full-time so it was no issue to pay each month and do upkeep. I very unexpectedly became disabled basically over night from a rare spinal complication THEN developed seizures that have made it illegal for me to drive and made it so I can't live indepedently anymore.

So, the car now has a lot of issues from sitting pretty much other than to move it and I can't afford to fix it as the altanator is gone and so is the battery according to a mechanic that gave it a look. It will not drive at all or turn on whatsoever like its cooked.

My concern is 1. I still have $3900 left on the loan to pay off and I currently pay $175 a month but I am only able to work part-time from home as I try to apply for disability and I have no one that can help me financially. I am concerned with trying to keep a $175 payment up per month and Bridgecrest told me the only way to change the monthy payment is to get it refinanced through a bank. 2.If I sell it privately, can I still refinance it and pay in increments to my bank or do I lose that and have to pay the rest up front if I do that? What if I sell it without refinancing? Could I keep just doing the $175 a month or would that be owed? I just don't want to destroy my credit if I can help it.

I called Bridgecrest a few times and they just keep giving me the same answers of "voluntary repo would work" and "refinancing can't be done through us" but no other real answers.

Appreciate any help!

Hi everyone,

I am very grateful to have found this subreddit. I am really in a bind because originally on Wednesday, I got an alert from my bank saying I overdrafted due to an unexpected bill. I immediately asked a few friends for help and managed to get into the green.

Woke up yesterday to another overdraft notice. Immediately checked and despite getting things dealt with, i was hit with an overdraft fee that put me in the negatives again. I called my bank and they basically said tough shit its a holiday weekend call back Monday. Now, the overdraft fee is causing MORE overdraft fees and I am now $70 below. I am terrified honestly because i have zero to my name and don't have anyone to ask for help from now.

just for context: I am homeless (living in my friend's living rooms and paying when I can) and work part time from home. They should've fired me long ago because I've had to miss so much work for hospital trips and appointments but they have been gracious to keep me part time until I get on disability. I get paid on the 15th and 30th. I have both psychiatric and physical disabilities that up until last year, were semi-manageable. I actually had a new job lined up in a new city but then had emergency back surgery for Cauda Equina Syndrome and it triggered a downward spiral into hell. I am now housebound/bedbound most of the time other than appointments and the occassional outing. I have a caseworker but this week she has been out.

I am more than happy to provide proof of things or whatever i am just very scared. Thank you for anything!

I am trying here because I am in a difficult situation and trying every avenue I can.

I am someone who lives with severe mental illness and multiple physical disabilities and lives in Nashville with a friend as of currently. I am applying for disability but the Nashville office managed to lose my application and I had to start completely over after 7 months of waiting. My housing situation though is unstable (I have mainly stayed with this friend tho and they have helped me medically stabalize) and I am not going to have anything come December.

I am working with Park Center already who said they don't know of anything that doesn't require TennCare or isn't an emergency shelter which I can't get until I am on disability. It feels like I am trapped and I am not sure what to do. Most of the housing options I know of still require TennCare.

I was wondering if anyone knew of any places I can try to look or call for help? Even if its just another org that may be able to help navigate? Much appreciated thank you.

Long short, I have mental health issues and autism and ended up having a meltdown last night that led to me hitting my head against my arm quite a few times which I thought would've prevented injury since it wasn't like a wall. My head has hurt since then and have just felt off. I have had a bit more of balance issues and have just felt woozy or like when you get too high.

Honestly, I just assume theres really not much a doctor could do for me anyways. Is there anything they would do to help/is it worth it to seek help at this point? Can I monitor at home for a while? I am going to talk to my therapist on Friday but otherwise, I would rather not tell a professional who doesn't know me and puts me inpatient

TLDR; how do you deal with your loved ones not being able to accept or support you where you are now with your disability?

I am 25 and although I've been disabled for years, I was always the person to "be so resilient" and "beat the odds". I was already diagnosed with a bunch of physical and mental health conditions but was able to hide them for the most part unless you really got to know me or saw me during crisis moments that i wasnt able to hide. I became more psychiatrically disabled towards the end of 2024 in which I ended up hospitalized multiple times and even going through ECT. I had to quit an incredible job and work for an org I had actually used the services of for my own mental health. Since the beginning of 2025 I have been hospitalized 5 times for my mental health not including my residential stay, and hospitalized COUNTLESS times in the past year for an insane amount of physical stuff that all happened at once including partial paralysis from a rare hernia complication, seizures, ME/CFS, worsening POTS, etc.

I say all of this because I have my masters. First in my family. Second in my family to graduate high school. I was abused and convinced my disabilities weren't that bad bc my mom had it worse. It didn't matter I could still work even if I was in pain or exhausted. Then I couldn't anymore after the emergency back surgery last year due to that hernia complication. Everything fell apart. I got demoted to part time and have had an insane amount of accomodations from my work and my manager has convinced my ED not to fire me countless times. It's a nonprofit with 6 employees so there's no HR, no leave, no insurance, nothing. If I dont work those few hours virtually a week, I won't have my medication, my complex care,or my medical equipment bc I can't pay for my insurance. I am couch surfing and actually about to have to leave due to my friends lease.

I am applying for disability and I have tried to make it known to everyone close to me that all of this has been happening and I can't do what I used to. Yet, i still get sent job suggestions i cant take up even tho i want to. I keep getting told that I should visit when i cant even get in someones house. I keep being asked when I will go back to walking. I keep having the same conversation and shock from people of "wait what? You can't do ____? But you used to be so good at that!" Or "don't you want to get back to normal?" LIKE YES I WOULD LOVE NOTHING MORE! I would love to go back to work full time and be able to sit up and see my coworkers. I would love to not be couch surfing while applying for disability. I'd love to go to PT and not have to focus on getting my body to stop acting as if I'm committing a crime by changing positions. I hate that shock and almost repulsed reaction i get when i straight up have to say "im disabled, its not changing right now".

It makes me feel so sad and alone. They want to cheer me on from an impossible finish line and don't understand why I can't just get up again and do what I used to do. I get it, its a BIG change to go from being constantly out in the community and doing the most always no matter what to doing jack shit because i physically cant. It is being treated like a choice tho like i can just go back to work full time if i "really wanted to" as if getting on disability isnt hell and a half and living off of a few hundred dollars isn't horse shit. it is hard on them but i never get asked how it impacts me.

I just want to know how to set that boundary of basically "stop putting old expectations on a new situation" and also "this sucks but does this suck with us together or do you need to duck out?"

I am sharing this here because I am wondering if anyone has survived being homeless with medium-high support needs autism, physical disability (especially those who use wheelchairs and are only mildly ambulatory), and/or have severe mental illness (I am so lucky I have all three yippee) or resources I can try that anyone knows of. I also need help managing what feels like is going to be an endless stream of meltdowns.

My friend had shared an email a few days ago and requested that myself and their partner clean up a bit in the apartment. They weren't sure if the apartment inspection was going to be Wednesday or today. I work from home part time virtually and am usually in bed due to my physical disabilities. I have been living in my friends living room for about a year, less if you count the months of hospitalizations both for physical and mental stuff. I barely make enough money to cover my basic costs and can't work any more hours or anything. The small amount of hours I have now are already unbearable as it is which may seem pathetic but all my providers have said I shouldn't work. I am applying for disability right now but my state somehow lost my application I did last year with my caseworker and are making my caseworker and I start over again.

In the meantime tho, my friend had said I always have a place with them and that gave me some safety feelings because I don't have anywhere else to go or anyone else I can stay with and I can't stay alone. I also have a kitty and he is my baby and I don't want to be in this world without him. He is very attached to me too. I am not joking when I say he is the reason I am still alive.

The inspection was quick and the lady just did a walk through but apparently was the apartment manager which we weren't expecting. My friend was supposed to have put me on the lease a few months ago but said they were having too much trouble to and decided I was fine without it. By technicality, I know I was already at risk of being homeless because I don't pay rent with them ( i do pay light and utility) and am not on the lease. They were just trying to help me which I appreciate as I have had an insane amount of health emergencies this past year and need help but didn't have access.

After they closed the door though they just casually said, "I hope they think you are a guest and didn't see your cat because if they did, there is nothing I can do if they want you out" then walked off. They just messaged to our group chat from the other room asking if I have housing yet (I had gotten on a few waitlists but many of them require Medicaid here).

I am trying so hard not to have a massive meltdown or resort to SH but I genuinely feel so anxious and afraid. I know logically, they still love me but, mentally I am screaming and feel so alone suddenly and like everything is fucked. I feel like I can't express in words any of what I want to ask or say or need or anything. I feel like I can't do this. All I want to do is slam my head as hard as I can and disappear. I don't know what to do or how to handle this either logistically or emotionally.

I don't have anyone else I can stay with, especially anywhere accessible. It is about to be summer and it easily creeps into the upper 90s here and I have a LOT of medication that needs to be safe. There are so many factors playing against me but I am having a hard time identifying what will work for me. I also can't afford rent literally anywhere and because I am not yet on disability, I do not qualify for a lot of things. They assume part time = lazy asshole which maybe I am but I also have a list of diagnoses longer than a CVS receipt. I do still have my car but have seizures so I really am not supposed to drive anymore (just one of the wild health stuff this past year) and I have a storage unit. I am rambling but any help is appreciated.

I am sharing this here because I am wondering if anyone has survived being homeless with medium-high support needs or resources I can try that anyone knows of. I also need help managing what feels like is going to be an endless stream of meltdowns to come.

My friend had shared an email a few days ago and requested that myself and their partner clean up a bit. They weren't sure if the apartment inspection was going to be Wednesday or today. I work from home part time virtually and am usually in bed due to my physical disabilities. I have been living in my friends living room for about a year, less if you count the months of hospitalizations. I barely make enough money to cover my basic costs and can't work any more hours or anything. The small amount of hours I have now are already unbearable as it is. I am applying for disability right now but my state somehow lost my application I did last year and made my caseworker and I start over again.

In the meantime tho, my friend had said I always have a place with them and that gave me some safety feelings because I don't have anywhere else to go or anyone else I can stay with and I can't stay alone. I also have a kitty and he is my baby and I don't want to be in this world without him.

The inspection was quick and the lady just did a walk through. My friend was supposed to have put me on the lease a few months ago but said they were having too much trouble to and decided it was fine without it. After they closed the door though they just casually said, "I hope they think you are a guest and didn't see your cat because if they did, there is nothing I can do if they want you out" then walked off.

I am bamboozled because they NEVER told me I needed to hide my cat or anything. They didn't tell me to go out until we had the inspection done. They didn't do anything to give me a chance to NOT be kicked out after telling me from day one to even like a month ago that I "always have a place to stay with them".

I am trying so hard not to have a massive meltdown or resort to SH but I genuinely feel so anxious and afraid. I also feel betrayed and I am trying to not think about how no one cares or loves me. I feel like I can't express in words any of what I want to ask or say to them. All I want to do is slam my head as hard as I can. It feels like my hands are one fire and I need to just explode. I don't know what to do or how to handle this if that happens.

Hi yall

I just was diagnosed yesterday and when we discussed the levels, the doctor said that my tests showed severe deficits in every category. I am very much verbal and even for a period of time, had found work in my special interest and got to speak about it often even on TV. I was raised in a very abusive household and my oldest half brother has severe autism and learning disabilities and was given to CPS but he was kind of my frame of reference for level 3 tbh. I do struggle a LOT with repetitive behavior especially self injuries and needing hospitalizations. I am also very very sensory sensitive and also struggle with basic day to day socializing and ADLs but (my own bias probably) I thought if I was level 3 I wouldn't have been able to go to college or have a job at all? Like I thought Level 3 would mean like even at my best I would've been unable to have pushed on like that? I did show signs in childhood but again I was being very severely abused so my lack of social skills and such was blamed on that.

I do rely on my friend from college a lot now and live in their living room while I wait for independent living but bc I have no family support at all and it would be dangerous for me to go back to them. I worked and pushed pasts my limits chronically but my understanding was I would have crashed and burned a lot sooner if I was level 3? I did self medicate and self harm but I was still able to force myself to work and did well in the classes I cared about which I just thought meant I was level 1 at most.

I am still learning but I truly thought I wouldn't even be diagnosed and I was wasting everyones time. I only got evaluated bc I'm applying for disability now that I've been hospitalized almost 10 times in the past 2-3 years and my therapists and psych thought it might be autistic burnout I'm facing. I hope this wasn't offensive and I'm sorry if it was.

Any resources to learn would be appreciated. also, if anyone can relate i would appreciate that too.Thank you.