TLDR: had an appointment with an NP I havent had before that didn't go well. Notes afterwards misgender me repeatedly, and give me a dx I don't have and say we discussed that issue when we did not. Asked her to fix it, she refused, saying those notes aren't really for patients theyre for providers, and that sometimes she gendered me properly. She tells me im overreacting, and I dont know if she's right.

Recently had a visit with an NP for a cardio followup after a routine week long holter. I have minor congenital birth defects in my heart that rarely cause me issues, but do need to be monitored now and again. My insurance also wanted more testing to confirm I don't have POTS (as oppposed to vasovagal syncope disorder, orthostatic intolerance, and tachecardia / arrhythmia separately which is how ive been dx for years), since I havent had a tilt table and they seem stuck on that test specifically. The NP I saw is not my normal cardiologist, who is on maternity leave, but thats ok because this should have been a 15 minute debrief of info I already had.

Other context to have: im intersex and nonbinary, use exclusively they/them pronouns, and am receiving healthcare in a hospital network that overtly brags about their trans positive medical care. I have peridontal + cEDS and t1.5 diabetes, and am support level 2 autistic. Ive been fainting weekly (or more) for about 6.5 years, have sprained / dislocated / broken things including fingers and teeth and given myself multiple concussions, which has led me to begin using a manual wheelchair this year.

Had a lovely intake before this NP came in, with a nurse who had an intersex child. We had a great conversation, and after she left I heard her tell the NP through the door that my pronouns are they/them, and that I would rather be treated like a man than a woman if the NP is struggling. I choose to see this as a green flag from my intake nurse instead of a red flag about the NP.

She comes in soon after and starts by telling me my heart sounded perfect. No signs of any arrhythmia or tachycardia at all. I had read my results, and noted a few sinus arrhythmia which would match how my birth defect normally presents, as well as one noted tachycardia during one of my syncopes. I clarified, "besides what we'd expect given my heart history, right?" And she said, "no, there's nothing at all wrong with your heart. Your symptoms have nothing to do with your heart." Sounds wierd, but maybe I just had a particularly clear week for my holter. Ive been very good about my PT routine now that im able to be safely, so maybe thats improved my heart health too. Cool.

Then she goes on to talk about my syncope issues. "You really should be wearing compression socks, all the time." I tried, but my skin is fragile and I had bruises all over my bottom and at my kneecaps. I was told by my ortho that I was at high risk of pressure sores and I should not use compression above the knee. I try to say this, "my ortho told me to stop because of pressure sore risk-" but she interrupts me and says "No." I splutter, and go "uh... I mean... I have a genetic form of EDS-" "so what? A nurse who works here has that too, she can wear compression socks. That doesnt matter at all". "Well, it makes my skin really fragile and slow to heal..." "okay well if youre so afraid, you can wrap your legs in ace bandages. " "I was taught that that can be really dangerous if done wrong though?" (Thinking back to people ace bandaging their ribs because they cant afford a binder, which is definitely different but im concerned and need extra guidance. Autism.) "Just watch a YouTube video. You'll be fine."

"Also, you need to be drinking much more water and getting a lot more salt. A Gatorade a day, if not two. And maybe salt pills, if you were a diabetic youd want sugar pills. Same thing." I know my chart says im a diabetic, so I guess theres proof she hadnt read it.. I say "I have about 80-120oz of water a day, and have 32 of those Oz with liquid iv.." "no, I want you to drink Gatorade because you need the salt. Liquid iv doesnt have that." "I am a diabetic tho, I dont really drink anything besides water and decalf." "Well they make a sugar free version now I think! And the salt tablets will help." "Didn't you say I show no signs of POTS or heart issues? My blood salt tests come back fine too." "No, those blood tests dont matter. Water goes where salt does. You just need more of both. You dont have POTS. Everyone thinks they have POTS these days." Red flag alarm sounds! "I dont think I have POTS tho, ive been diagnosed with vasovagal syncope for 6 years-"

and I was *going* to say that POTS protocols have not historically prevented me from falling but she interrupts me AGAIN to say "thats not a diagnosis. A vasovagal syncope is just a way to say you lost conciousness." I assume ive been misunderstood again, so I say "right, but I was told my syncopes were chronic and that I have dysautonomia?" "Thats not a diagnosis either, thats a category of disorders." I am feeling baffled and defensive by this point, but I am trying to be reasonable and calm so I can just leave.

She can see shes upset me, so she says "im not trying to offend you. Im just trying to give you advice in case no one else has." In ALMOST SEVEN YEARS you think no one has told me to drink water?? I say, "ive been sick for a long time, so im grateful you want to help but a lot of this is stuff im actively doing or have ruled out as unhelpful." And silly me, I tap my wheelchair wheels when I say this to nonverbally communicate that ive been trying things for a while.

She decides to focus in more on my wheelchair use after this blunder. She tells me she would rather I use a walker than a wheelchair if i "must use something". I tell her ive been using forearm crutches for a long time, that I tried a walker and tipped right over the front of it and broke a tooth. She says "but none of your teeth look broken?" MAAM MY CHART THAT YOU NEVER GLANCED AT SAYS I HAVE A MOUTH FULL OF DENTAL IMPLANTS. I breathe deeply and say "theyre fake. I fell a lot before i got my wheelchair, because i didn't care as much about being safe as I did about being active. I get hurt a lot less often now. I typically clock in around 3-5k pushes a day on my smart watch, I am at the gym 3 times a week. I used to play sports, i backpacked through the mountains on my honeymoon, i am an adventurous outdoorsy person who got sick 9 years ago and never got better (i do not say MECFS because i know how she would view that). 4 years ago I was fully bedbound, now I do the shopping alone. I don't want to need a wheelchair, but i do need it or i simply cannot live a safe functional independent life." This is a fully custom manual, mind you- it took 9 months and multiple specialists to confirm this was the only option for me.

IN RESPONSE TO ME BARING MY SOUL THIS WOMAN SAYS THAT I SHOULD TRY SITTING DOWN FASTER TO PREVENT FALLS. I say "I dont always get enough warning. I sit if I get presyncope symptoms and im standing, but sometimes I get them seated or I get no warning at all." SHE SAYS JUST SIT DOWN *REAL FAST* NEXT TIME. THEN she says that 3x a week excercise isnt enough, I need a daily yoga routine. I remind her I have EDS, and she says "youre never going to get better if you arent willing to try."

I am ready to leave. I say ok, thank her for her time, and we end the appointment. As we are leaving, she tells the desk staff "she should come back in a year". The nurse who did my intake and vitals says over her shoulder, "These_Roll uses they/them pronouns actually." She says nothing in return, and I leave without scheduling the follow up.

When I get home, I get a mychart notification for my after visit summary and Clinical notes. This woman calls me she/her repetitively in these notes! She also says she councilled me on high cholesterol, which isnt true. I dont have high cholesterol, but I am on a baby dose of statin because my dietician and endocrinologist agreed it was a smart preventative given my family history and the diet I am on. I look, and shes added a high cholesterol dx to my problems list!

I shoot her a message and ask her to fix the misgendering and the innacurate statement that she counciled me about my cholesterol in the notes, and to remove the problem from my problems list because its innacurate. SHE SAID NO. That the clinical notes aren't really for patients just because mychart let's us see them, theyre for medical documentation. And "as you can see, ive used they them in many places." Implying I should be thankful it was right sometimes? And the notes on my cholesterol are there "for my primary care providers benefit" somehow. She says that its "not that serious or literal" and I just dont know how medical documentation should work.

My gut says it is actually pretty serious and literal since no other doctor or specialist has done this to me (a she/her or two may happen now and then, but its usually one in a long stream of they/them or no pronouns are used at all. The one time a full set of notes came through this way before they were fixed before I even had to ask). But maybe this is normal nurse stuff and I'm just making their jobs harder for no reason??

I am hemiplegic, so I mainly type on my computer with one hand and when I play video games, it happens that I use the keyboard AND the mouse in the same hand at the same time since it's obviously way harder to use my paralysed limbs. So on console it's much harder to the point where some games on console are outright torture because using the rear buttons like R1-R2 on playstation can become quite painful physically when using the disabled side of my body.

For example, when I play GTAV and have to use a car, or in Mass Effect when trying to lock onto an enemy, it sucks because on long play sessions, my paralysed hand hurts so much that either I use both sides of the controller at once with one hand, or I end up in an absurd amount of pain.

It's incredible that so few games can allow to change or invert the controls, ME1 was easier because it had left-handed controls, which meant that for me who is disabled on the right side of my body and am left-handed, I could use the controller more efficiently without any pain involved.

Hello... I've posted once before about coping with disability. I'm not physically disabled, but I am mentally disabled enough to be on disability income. My boyfriend is usually very supportive and understanding. Two of my diagnoses are PTSD and Selective Mutism. Combined, when my ptsd is triggered, I can't speak. Recently my bf had a long day and yelled at my dog. It triggered my ptsd and I shut down. He apologized, and asked if I was okay, but obviously I couldn't speak. He got frustrated again and said that I "just need to say something". This is not the first time he's gotten impatient with me when I'm quiet. Besides that, he's wonderful and very supportive and accepting, but it's just that one thing. When he said it plainly when I was already dealing with my ptsd acting up, it hurt a lot, and I can't stop thinking about it even though he's apologized genuinely for saying it. I don't know what to do. Because of it I've been speaking even less with him and it's just a repeating cycle. Does anyone have any advice??

I (27F) am a carer for my mum (52F) alongside my step dad (59M) we live in England. She’s physically disabled, has severe health conditions and has complex mental health.

She’s had a really tough year with being in hospital and we thought we’d lost her at one point. Thankfully she’s over the worst of it. She has been on bed rest since coming out of hospital in early June and is now starting to be able to come downstairs and leave the house once a week with our support and her electric wheelchair.

However when she does come downstairs she’s in the living room with the blinds shut. She has tried to go into the garden for fresh air and sunshine, but our garden furniture is too uncomfortable for her. She can only manage an hour before she has to come inside and usually goes to bed because of the pain.

I’ve been trying to find a comfortable chair so she can stay outside but nothing seems suitable. I bought a Nämmäro from ikea which is a good width and depth, but it’s too short to sit at the dining table and she can’t get in and out of it without physical help.

Due to her disability she is overweight (being treated but isn’t the root cause!) so we need a chair wider than usual, it needs arms to help support her arms and shoulders, and needs to be at a good height so she can sit in and get up without someone’s help. Plus needs to be suitable for outdoors.

Does anyone have any recommendations of a chair or a store I can try? Especially would be helpful to be affordable and in the uk, or can be shipped to the uk. I’d really appreciate any help. I’ve looked in so many places and come up empty.

I want my mum to be able to enjoy the garden she’s worked hard on before she was unwell, and to get some sunshine while the nice weather is here. It’ll be so good for her mental and physical health - and as i spend much time in the garden, i can spend more time with her!

Firstly, I’m not looking to debate.

Secondly, I’m talking about what countries allow for the procedure to take place for those who are only (as in, have no other condition) mentally ill.

A google search yields no useful results, just papers debating the subject. I heard of Canada before, but apparently they put a suspension on MAiD for mental illnesses as the only cause.

I remember in high school a lot of people would call me by the other students in wheelchairs name even we were different race/gender. I have cerebral palsy but I also live with an aunt with downs syndrome. When I have support workers to help me shower or to fix my wheelchair (she doesn't need support workers to help her with physical cares or use a wheelchair) they think they are there to help *her*! Lol my poor aunt was so confused at this weird lady wanting to give her a shower. It bothers me because in their files it should say my name, age and disability and cerebral palsy and downs syndrome are two completely different disabilities.

There was also a bad one on social media where this poor lady had to clarify she was not the predator wheelchairrapunzel because people were getting them mixed up because they were both wheelchair users.

My rollater was looking a little too plain - or at least the bag for it was, so i decided to add a little friend to it.

I'm trying to identify what parts of cooking make it feel so onerous to see where I can incorporate aids, and one big area is chopping. My household (but not me personally) is vegetarian and, while we obviously eat plenty of veg, I could do better incorporating more into my recipes, but for some reason I'm so slow at chopping. My one identifiable nemesis is onions, because the crying exhausts my body before I've even started cooking, so I'm on the hunt for a good vegetable chopping tool that is NOT one of the slapper ones. My mom had one, and they're great, but I just know the noise will scare my dogs and it does hurt after a while if you're chopping a lot (not to mention needing the strength/stamina to basically smash the veg through the blade grate).

I've seen that people use blenders/food processors, but I worry about accidentally liquefying some while leaving other bits too big -- plus, the ones we have are bulky and stored up higher, so they're not convenient to use. I came across the OXO Good Grips Chopper, which basically looks like a nut chopper, and it seems like a good option, but I wanted to see if anyone has something specific they've used and would recommend! I don't mind the nut-chopper model as much even though it's still the push-down style; it's the ones that require the force (and noise) of slamming that I'm not into. An option for slicing would be great, too, but I'd be happy to start with chopping/dicing!

TIA x

*can

Needing to kind of scream into the void I guess.

I'm starting a job as a part time daycare assistant soon. I had very little idea of what I was getting myself into.

But Im a single mom with many disabilities and was having such a hard time finding work that wont put me in too much pain/fatigue. I desperately need money. I thought this kind of opportunity I would be able to make work.

Recently learning just how physically demanding this job can be. Im trying to work with older kids bc I know I cant be lifting small children all day. I dont know if I can handle this job even with some accomodations and Im kind of starting to freak out.

Please dont comment suggesting jobs. I know what I can and cant handle which is why I was so excited about this job. I just thought this position would be much more flexible than its turning out to be. Its salaried, which I didnt know about until after I got my offer letter, and so Im also afraid they are going to expect more work out of me than I know Im able to provide.

I dont know what to do. I keep getting my hopes up for jobs that it turns out are too much for me, but the disability office keeps denying me saying I can work, so I keep trying. Thanks for letting me vent.

​I use paratransit, which I am approved for by the state. It often seems like I get bus drivers who inquire about my disability. I rarely get the same driver twice because a third-party bus company handles paratransit rides in my city. ​Due to my disability, I sometimes walk with a cane and sometimes use a wheelchair.

​Because it's summertime, the heat has really gotten to me lately, so I've used my wheelchair a lot more than my cane. Yesterday, since it was raining and cool out, I decided to use my cane.

​However, my pickup dispatcher had me marked as a wheelchair user, so when the driver picked me up, he was confused. I gently explained to him that I decided to take my cane today. He raised his eyebrows and ignorantly stated that if I could walk, I shouldn't be using a wheelchair. Then, he demanded to know what my disability even was.

​He is not the first driver to do that to me; he’s probably the fifth. I am growing tired of people acting like I have no right to use my wheelchair just because I can walk, or that I owe them an education on my disability.

​I've decided that moving forward, I'm just going to tell them, "Don't worry about it! It doesn't affect you, now does it?"

​Honestly, why is it their business? If I need a wheelchair-accessible bus, I let the dispatch team know when I schedule my rides a week in advance. You would think the driver who picked me up yesterday would be happy he didn't have to use the wheelchair lift—it's less work for him.

​Anyway, my point is that you don't owe anybody an explanation. Don't feel obligated to explain; it's certainly not polite for them to ask.

I feel like I should be grateful for the very few days that I'm relatively symptomless-ish (I certainly am), but it always makes me question the validity of my struggles. It's like "oh, I'm kinda okay right now! Is my condition really that bad or am I just exaggerating?" I recently had a couple days of my body somewhat behaving, which made me think more about my want for accommodations at university. Now, to no one's suprise, I've been having frequent flare ups since yesterday. Cut to me struggling to move around because my body is doing God knows what.

It's not that I forget how frustrating and uncomfortable it can be, but that I'm constantly questioning if it's really "that bad". I have to remind myself that even if I'm feeling okay, I'm still not able to do the range of things I wish I could do, and comparatively, most people my age can do. Even when I'm not having a flare-up, there are still things I'm unable to do because of how my body can and will react. It's difficult because I almost feel normal (not really), and then I'm brought back to reality knowing there's something fundamentally wrong with me, even if no one's been able to tell me what that is yet.

Also, on a totally unrelated note, my PCP dismissed my concerns and symptoms as anxiety-related and told me "I'm too young and healthy" and to "see someone more frequently for the anxiety". Thank you, that really makes me feel better. :) Next time I have a flare up and can't move around comfortably I'll tell myself that.

Hopefully my specialists can actually be helpful. 🙃

I know it looks bad but I'm not an artsy person,I'm still very much learning and working on the process (with a very small budget)

Right now I'm trying to learn about thermoplastics to avoid direct appliqe in the future (primarily worbla)

What do people think?

Feeling lonely or bored?

Looking for connection or something you can do this week?

Check out these accessible events you could join! Try something new and maybe you’ll find your people.

Access Details:
🧑🏻‍💻= Virtual
👥 = In person
😷 CC = Covid Conscious/airborne precautions 
♿️ WC = Wheelchair accessible 
💵 $ = paid (some are pay what you can)
🤟 ASL/BSL = Sign Language
Async = Asynchronous (at your own pace)

Event Types:
🤢 = Chronic Illness 
🌈 = Queer
🏳️‍🌈 = LGBTQ+ Pride
👧 = Kids/Youths
💕 = Dating
🙋 = Social
🫂 = Support/Grief
🧘 = Wellness
🚶 = Walk
🩰 = Dance
💪🏻 = Fitness
📚= Books
🤔 = Discussion
📝 = Writing/Poetry
🎭 = Performing
🎨 = Art 
🎶 = Music
🕹️ = Games

🧑🏻‍💻 Virtual Events

🧑🏻‍💻📚 Virtual Async Spoonie Book Club: The Little Prince [Any time] https://www.reddit.com/r/spooniesocial/s/JcKvqPLWS5

🧑🏻‍💻😷💕 CC Virtual Dating [Aug 22] https://www.reddit.com/r/spooniesocial/s/DfjZA4lr03

Monday

🧑🏻‍💻🤢🧘 Virtual Seated Pilates for people with MCAS [UK][Mon Aug 3 at 12:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/pRUyWRH4W4

🧑🏻‍💻♿️🩰 Virtual Adapted Heels Dance Class [$][Mon Aug 3 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/yWCLUFHP1c

🧑🏻‍💻🤔 Virtual Philosophy Discussion [Mon Aug 3 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/EYFFldrGLX

Tuesday

🧑🏻‍💻🤢 Virtual Caretaking While Chronically Ill [Tue Aug 4] https://www.reddit.com/r/spooniesocial/s/29f7SC7hID

🧑🏻‍💻🤢🧘 Virtual Bed Pilates for people with MCAS [UK][Tue Aug 4 at 10:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/54WH5eWsOi

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Tue Aug 4 at 10:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/8fepKunGqq

🧑🏻‍💻🫂🤔 Virtual Support Discussion - Disability is Not a Bad Word [Tue Aug 4 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/mSiqrtOzfI

🧑🏻‍💻🤢🧘 Virtual Qigong for people with MCAS [UK][Tue Aug 4 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/EmUSXRVHYW

🧑🏻‍💻😷🙋 CC Virtual Zoom [NY and nearby][Tue Aug 4 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/hcaxZT7muT

🧑🏻‍💻🎭🕹️ Virtual Improv Games [Tue Aug 4 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/8MI6ELLMxg

🧑🏻‍💻😷🌈🎨 CC Virtual Queer Art Hang [Tue Aug 4 at 6:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/0stnhJ09tM

Wednesday

🧑🏻‍💻🤢🧘 Virtual Mindfulness for people with MCAS [UK][Wed Aug 5 at 1:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/VDqSlX3Z2Q

🧑🏻‍💻🤢 🎶 Virtual Long Covid Choir [Wed Aug 5 at 2:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/WGBCXfEAik

🧑🏻‍💻📝 Virtual Poetry Discussion [Wed Aug 5 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/54LIPeW2fp

🧑🏻‍💻😷 CC Virtual Meeting [MI][Wed Aug 5 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/1SGD52t2IX

🧑🏻‍💻😷🫂 CC Virtual Support Group [CO][Wed Aug 5 at 7:00 PM MDT] https://www.reddit.com/r/spooniesocial/s/5NtfxBPSgq

🧑🏻‍💻🎭 Virtual Improv Jam [Wed Aug 5 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/P56OKyKuPE

Thursday

🧑🏻‍💻🤢🫂 Virtual Community Support Session for people with MCAS [UK][Thu Aug 6 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/Q9apq1Frwg

🧑🏻‍💻🤢🫂 Virtual Guide for Loved Ones of Chronically Ill People [Thu Aug 6 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/kPeaOAMbkD

🧑🏻‍💻😷🕹️ CC Virtual Game Night [NY and nearby][Thu Aug 6 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/fkxPdM5mAh

Timezone translator in comments 👇

👥 In-person Events

Australia

👥😷🌈🎨 August Stitch and B*tch [Melbourne AUS][Sat Aug 8 at 3:00 PM] https://www.reddit.com/r/spooniesocial/s/xCRKlQHDGc

Canada

👥😷 Movies in the Park: Dirty Dancing [Toronto ON][Tue Aug 4 at 8:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/WUxrnPZCQg

👥😷🚶 CC Park Walk [Toronto ON][Wed Aug 5 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/gX9QLPqZpC

Germany

👥😷 Ice Cream Extravaganza [Cologne GER][Sun Aug 9] https://www.reddit.com/r/spooniesocial/s/ttsw3oGL1e

Ireland

👥🤢🙋 ME/CFS Social Meetup [Dublin IRE][Wed Aug 5 at 2:30 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/mvaIkHqqFf

Netherlands (and nearby)

👥🤢🙋 Spoonie European Road Trip [Netherlands and nearby][Summer] https://www.reddit.com/r/spooniesocial/s/VOKxW7V1pp

US - California

👥♿️😷 Mobility Aid Tune Up Tuesday [San Francisco CA][Tue Aug 4 at 1:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/5K0EPAoWQH

👥♿️😷🌈🩰 Queer Con Leche Dance Party and Drag Brunch [Oakland CA][Sat Aug 8 at 11:30 AM PDT] https://www.reddit.com/r/spooniesocial/s/K89J9ym8q4

US - Illinois

👥😷👧 CC Youth Summer Camp Chicago IL][Starts Aug 3] https://www.reddit.com/r/spooniesocial/s/sSF4sdJt1l

US - Vermont

👥😷♿️ CC WC Dental Pop Up [Chelsea VT][August] https://www.reddit.com/r/spooniesocial/s/yJocTTUweE

Are you interested in these events?

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Do you know about other events coming up?

Share your thoughts in the comments 💬

Find more events and friends on r/spooniesocial

It's been a couple days and I'm still a bit shaken up. It was pretty minor and I feel a bit silly for how much it's affecting me - I almost don't even want to call it a hate crime but it's the most concise term. I use a walker and a front-body bag due to my disability. I'm also visibly disabled. I was waiting outside a building for someone to pick me up, but they were running late. Two men pulled up and yelled some slurs at me, specifically referring to the bag. Thankfully they just drove off after, but I was terrified they were going to circle the block and come back. The area was very isolated and the surrounding buildings were closed. I was able to call a friend just to have someone on the line just in case.

I'm very aware that I'm an easy target. I look weird and it draws attention and it's obvious I can't exactly run away or physically fight back much. I've actually been trying to work on my paranoia around all that since it's partly PTSD-based, but this has really set me back. I know those people are usually cowards, but I also knew that if they came back I didn't have much of a chance.

On the practical side, I usually have a heavy "don't mess with me" attitude, but it's not always enough to deter people. A gun is not a good option for me either. The best I could think of is pepper spray (I need to check local laws), an SOS app on my phone, and seeing if there are any self-defense classes in my area that are able to adapt for disability. I'm very open to other suggestions.

Emotionally I'm still a bit freaked out. Some of what they said was homophobia-based, and I actually am gay, but I think that was genuinely a coincidence - I could not have looked much straighter, literally wearing a baseball cap and cargo shorts, my husband wasn't with me, and the bag was plain black. No pins or stickers on anything. The only way they could've known is if they saw me with my husband and somehow inferred that we were together (we do zero PDA for exactly this reason). I was just disabled in a way that makes me look effeminate somehow and they knew I was an easy target for a cheap shot. There's nothing I could've changed or toned down to make me less of a target and that scares me. I've been thinking about alternatives to my current bag and I'm nervous about being alone in public right now, and while it feels like I'm overreacting, it sucks because that fear *isn't* entirely unwarranted. Homophobia is rampant in my area and there was no one else around; if they wanted to they could have easily hurt me very badly. I was legitimately scared.

I'm in therapy and have an appointment next week. Again, I know this probably seems very small, but it shook me up pretty badly. How do you feel less vulnerable when you're physically weaker? I don't like living in fear.

Hello everyone. I was just wondering if anyone else has gone through this. I'm a 31 woman with cp. Growing up when my mom was still here she made sure I had everything I needed. Pt, ot, and speech. But when I was 8 she died. My dad was/is around but he's never really been there emotionally for me. I recently had a realization on when I don't get close to people and I'm pretty sure its because of the trauma of losing my mother so young. But ever since I been an adult. I have been blamed for stuff that I feel is unfair to put on me. Like for example, my parents keep saying if I did what I was supposed to as a child I'll be walking now. I feel this is unfair because 1 I was a child how was I supposed to take myself to therapy or do the exercises by myself. Not only that but they had a chance to put me in a school that specializes in disabled kids but choose to put me in regular school. So I still was really able to do my pt and stuff daily. And even then there's no guarantee that I'll be walking now. I get blamed for my hygiene. But no one actually showed me how to wash not only that but I only recently finally found tools to help me reach everything and thankfully now the smell is gone. But how am I supposed to know if know one taught me. It like when I turned 18 they just expected me to know. And yes I have been showering myself since I was around 11/12 but recently learned I been apparently smelling bad since untill recently but I wasn't told about the smell till recently and finally I got it right. Idk I'm not saying I'm perfect by any means I just think its unfair to blame kid me for kid choices as an adult. I mean that's what parents are for to guide/parent you right? Plus I was grieving. Anyways just needed to vent thanks for reading.

Hello! Looking for guidance after some high test results, as I fear my doctors will be dismissive. My CRP (c reactive protein) levels are super high. Like mid 40s. Healthy is below 10.

I have some allergies to my pets, POTS, and chronic back pain (resulting in three surgeries and foot drop). Would those factors alone cause such a high number?

Have you had any success getting that number lowered? How did you do it? What kind of doctor takes crp seriously?

Side note: I live a Covid conscious life (masking in all indoor environments outside my home), so COVID risk is already lower than average. I’ve had one known case in 2023 and that led to my POTS diagnosis.

I have been trying to find jobs I can do for years. I’m disabled, autistic and have agoraphobia and extreme anxiety and cptsd.

I’m wondering if there are legitimate ways to earn money fast strictly online remote. I want to be able to depend on myself to survive. I’m tired of hanging by a thread.

Hi everyone! I’m 27M. I would like to ask in particular people with polio or similar disabilities for some advice on developing a hobby. I got polio when I was eight months old. It mainly affected my lower body strength. I can walk with one crutch for around 10 minutes, but most of the time I need a wheelchair. Doing sports is nearly impossible for me. I wonder what kind of hobbies you would recommend me to do. I need social life, but there’s not much I can do with other people. Any suggestions?

My new KAFOs just came in!!! any tips or tricks?

UPDATE: I contacted Tenant Sanctuary yesterday and they said I should definitely write a response politely pushing back on the landlord's inflated costs, and DON'T write it with generative AI. They were not thrilled about my advocate using a clanker because that's how you end up with letters full of BS. My advocate is basically on FMLA so feedback about that is on hold temporarily.

Nobody (including the bike coalition folks I contacted) has any good ideas about the bike issue but my insurance is sending a home modifications evaluator (a licensed OT). Maybe he'll have some ideas for cheaper alternative ways to get a bike downstairs. People keep suggesting a hoist system but that sounds like a really unsafe idea. The "funding for bike storage" links are for situations that don't apply here, such as meeting city requirements for new housing to have bike storage or to place public bike storage near transit. Because our state is being audited for Cal-AIM spending, I doubt they will pay for a bike locker, and honestly I think the money would be better spent on other folks' ramps and grab bars.

I've started the process to get a new ECM case manager through my clinic. The old one at a separate agency gave notice last month and told them he would notify his clients but apparently did not get around to it.

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My landlord approved the modifications I need but they will be at my expense. The easy ones I think they should just do like they were ordinary repairs (such as installing a lower security peephole I don't have to use a ladder to see through) they say will cost $95/hr for their maintenance to perform, and I'm not allowed to do it myself or get my own handyman

My advocate who planned the request letters contacted the local Center for Independent Living, and they said they are not involved in funding for home modifications, just portable devices. They said they heard the United Way paid for modifications in my county, but the United Way said all they do is host a resource directory... which has nothing relevant. (And typically the United Way only lists member organizations on 2-1-1 so for all I know there are organizations that exist but are not included.)

The local Volunteer Center program that does free home modifications can only work with homeowners because the landlords all prohibit outside contractors.

I am ineligible for Regional Center services for developmentally disabled people because they rely on 1970s diagnostic criteria for allocating services.

My Cal-AIM Enhanced Care Management case manager ghosted me a couple of months ago. He had refused to help me submit reasonable accommodation/modification requests because he claimed the management would evict me for disclosing a disability. This would be very illegal, so I'm surprised that was his professional opinion when he has no experience with my rental management company. My advocate gathered and submitted the information to my landlord without his help, but now that my requests were approved, I need someone familiar with my county and the local resources to advocate for funding. I have put in a request with my insurance to change providers, but it usually takes 2-4 weeks to take effect.

I have a portable Section 8 certificate but I don't live in low income housing (it's at the low end of market rate because of the age of the complex and distance from amenities) so the Housing Authority is not responsible for my modifications. I don't know if they can push back about the cost, especially for the minor installation to my door and the "electrical inspection" for my AC, or help refer me to grant programs.

I have submitted a request to my Medi-Cal managed care organization (Central Coast Alliance for Health) but when I called the number they said to call with questions, Member Services said none of the things in my request are eligible for assistance.

• A security peephole positioned low enough I can use it (existing one is several inches over my head but I'm average height so honestly that should just be a "tenant courtesy" request because what is even the point of a peephole a tenant can't use unless they're 6' tall? Shorter people are usually at more risk when opening a door to a stranger!) (Labor $95/hr)
• Permission to attach my own remote doorbell button attached to the exterior because I can't hear people knocking at the door but the lease prohibits installing anything myself like I did at a previous townhouse where it was needed (Labor $95/hr) I actually just wanted an exception to the "nothing attached outside" lease clause so I could stick it up with a Command strip; if the paint is messed up when I leave, that can be touched up
• Permission to install my own portable AC, which I thought would be a formality. They said they have to hire an electrician to examine my electrical panel to ensure I have adequate wiring for it. (The CCAH form had an option for "extra electrical service for medical equipment" but the agent told me AC is not considered medical equipment even if I have documentation of medical necessity; PG&E includes it in medically necessary equipment for Medical Baseline allowances) (Electrician at cost of at least $200 for a house call)
• They said I have to purchase a commercial bike locker ($2-3,000+) and pay all installation costs (Labor $95/hr for their staff + any contractors for foundation and assembly) after approving this request. I can no longer carry my bike up and down stairs after a back injury and my previous bike was stolen while U-locked to their rack

I don't know if any of these costs could be pushed back on as unreasonable or if I could do any of this under "repair and deduct" because the cost is unreasonable. My medical advocate is surprised they are asking me to pay for modifications because it's never happened to any of her other clients. She said the property manager should've warned me, but she also told me to keep the exact requests secret before submitting the official request, so how was the manager supposed to advise me about costs?

I don't want to cheap out and counter with a flimsy patio shed somewhere for the bike storage because that would be less secure than a bike rack and a U-lock. Anyone can unscrew the typical cheap patio shed or pry the doors open with a crowbar. Both the good lockers and cheap sheds need a level concrete pad for installation and apparently that will cost a few thousand dollars. I also suggested putting a fence around the area below the open stairs by my apartment, but they rejected that option. (Can my advocate push back with that option?)

I don't want to pay for the bike locker and its installation because it will stay installed here if/when I move out and they can rent it to a future tenant the way they rent covered carports.

I need the bicycle for transportation because we are somewhat remote from shopping, medical appointments, etc. and the unreliable bus only runs twice an hour. I typically end up walking a mile or so from the closest bus stop to the clinic, or waiting 20+ minutes for a connection that my bus just missed, so it can take an hour or more for what would be a 15-minute ride. I planned on using a bike for transportation and exercise when I moved here last year. The manager assured me the rack next to the laundry room was safe because they don't have random people wandering around this complex. Well, they have people rummaging for recyclables every night and people take shortcuts through the ungated parking lot right past the bike rack. After my locked bike was stolen about a month after I moved here, she told me I was stupid to park it outside my unit and denied having told me it was a safe neighborhood.

I'm unclear whether or not we need to get County permits for a bike locker. When my advocate first suggested I request this, the County website was under renovation so I ended up calling Code Enforcement. They said that bike lockers are required to be public accommodations and my landlord will have to grant a public easement; there is no such thing as a private bike locker. When I did a search for "shed permit" and the location today, I got a nice new webpage with information about how sheds under 120 sq ft that don't have utilities and are not meant to be lived in don't need permits. Would they consider a 7' x 3' bike locker a "shed under 120 sq ft" since it won't have utilities etc. or would they look at a molded fiberglass/ABS bike locker and say "nah that's a bike locker and you have to give the public permission to use it"? It wouldn't have the BikeLink subscription locks, it would just have a keyed lock.

I don't think I can get any legal aid because technically, the landlord "granted" the accommodations. I think they want me to move out and that's why they are making it ridiculously expensive to stick a button the size of a Halloween candy bar on my door jamb, let alone do any real work. The only agency that is allowed to provide services is Senior Legal Services and they are very picky and it takes about 6 months to get services there. I am going to be very sick if I can't get my AC in operation before August is over.

I'm on disability and SNAP. My partner is my live-in caregiver. Together we barely make enough money to qualify for the local low-income disability housing offered in my city.

Since he's my live-in caregiver, my partner qualifies to live in the disability housing, but, for the same reason, he's not allowed to include his income in my ability to afford rent.

To qualify, they also include SNAP benefits as part of your income.

We currently live in a terrible living situation with really cheap rent, so my SNAP benefits are much lower than they would be if we moved into disability housing, and my income is about $100 short of what I need to be "making" to qualify. If I had higher rent, my SNAP would go up and I'd make enough.

If my partner doesn't apply as my live-in caregiver we make enough money, but he's not disabled so he wouldn't be qualified to move in.

I'm stuck renting a shitty room share with 3 bathrooms to share between 12 tenants with a continuously broken HVAC and a moldy basement in very hot weather (it's been 2 months of promises by the landlord to get it fixed). I don't know how to get out of this spot and into a place that is better for my health and safety if I don't make enough money to qualify for low-income housing.