MY DISABILITY STORY - (Osteoarthritis & Hypermobile Syndrome) 

"It will be different, but that doesn't always mean it is bad." That hits hard.

If I had a dime every time I heard "There is definitely something wrong we just don't know what it is" in a doctor's appointment I would be very rich. I have multiple diagnosed disabilities however many doctors disagree on which are accurate. You are right having a good doctor makes a world of difference. I consider myself fortunate that my original family doctor was amazing so managed to get many diagnoses early (some might be wrong but at least she attempted to put a label on it). unfortunately, she retired during the pandemic so iv been hunting for a new one ever since and it has not gone well. I'm not from the US so this is not just an American issue. Also thank you for sharing your story there is a horrible lack of representation of disabilities in the media which leads to a lack of understanding and misconceptions.

I had nothing to do with cosplay, I came along searching desperately all about ambulatory wheelchair users. Now, I look all your cosplay videos - you are so creative and encouraging. Have had four hard years from healthy to bedbound to now as an ambulatory wheelchair user with fatigue, nerve pain, muscle pain, myokarditis and pots figuring out how to manage life in a sense more than just surviving. I'm hypermobile too and think EDS is possible, but I too find no Dr to diagnose me (in my country there is ONE university clinic where you can be diagnosed). I got finally a diagnosis (ME/CFS) but still no help and I have medical trauma because of this whole process. Actually I took a break like yours from appointments, because they are not easy available (understandment), there is nothing more to prescribe and I couldn't stand the interaction with gaslighting, discrimination etc. How often I heard "just do more sports, your depressed, you have to eat more (bodyshaming for asthenic people)). I'm not from the US and the medical system I live in is called one of the best in the world. It's not, it WAS one of the best.... Long ago. Stay strong. And thank you sharing your story. This means a lot to me, because today was one of this dark days.

I know that it's very hard to share these kinds of stories. I had a similar problem navigating the US healthcare system. It can be so frustrating. I'm glad that you finally have a diagnosis and a treatment, and it makes me sad that it took so long for you to get that medical support. I will admit, I was one of the people who saw you on Instagram, and went to RU-vid to see if you'd talked about your diagnosis. At the time, I was considering getting a wheelchair for myself, even though my doctors had not prescribed one yet. The reel that I saw was a, "how can you tell if a cosplayers in a wheelchair really needs it? You can't, so stop trying," sort of reel. At the time, I was reading or watching the disability stories if any ambulatory wheelchair user I could find, because I wanted to find someone else who had my symptoms, so that I'd feel validated. After that, I stayed because I really liked your content, and I wanted to help your RU-vid grow. Your content has always helped me feel like I am able to do the things that I want to do, despite being disabled. Thank you for sharing the story, because it also makes me feel that I'm not faking or lying just because I'm not getting the support that I need from a medical team. Thank you.

It means a lot to me that you shared this. I’ve been gradually becoming more and more disabled and have been stuck in diagnostic limbo for a while (and probably will continue to be here for a while). It’s been hard adapting to this and to using mobility aids and it was especially hard to start using them at cons or while cosplaying. I didn’t know what to expect and suddenly I had to think about a lot of things I never had to before, like how it’d be to wear cosplays in a wheelchair or while using a cane and it was overwhelming and I felt pretty isolated in it, since I didn’t really personally know any other disabled cosplayers. All this to say that stumbling upon your channel made a big difference for me and seeing you make adaptive cosplays or things like cool wheel covers made me realize there was absolutely still a place for me in this hobby and even if things are different for me or I have to make some changes, I can still have fun doing this. I’m glad you finally found an informed doctor that listens to you and I hope everything goes well with getting a custom wheelchair!

I just found your channel and love it! I got sick 3 years ago with ME/CFS and got diagnosed with POTS in September and MCAS and EDS in February. I was sure I had EDS, but like you all my doctors shrugged and said “could be”. I went to a new autonomic neuromuscular neurologist and he immediately diagnosed me with EDS. My joints don’t go out of socket but I do pop and crack like crazy. I’ve asked if it’s subluxations but no one has told me if it is or not. Watching you sublux is exactly what my body does. My shoulder subluxed how you demonstrated and I didn’t know that’s what it was, so thank you for helping me confirm that’s what my joints are doing. Our symptoms are very similar so I would definitely not cross out EDS. If your interested my amazing doctors are at the Metrodora institute in Salt Lake City, they have diagnosed me with all my illnesses besides ME/CFS, they have actually actively been trying to help me improve and not just help me baseline. Metrodora might be worth looking into. I recently got back into collecting Barbie’s. I love how you customize Barbie wheelchairs! I use a wheelchair and I own the same wheelchair barbie you do. I might have to bedazzle her chair now…😅 I love how you cosplay. I’m a huge marvel fan and I think you would make a great Captain Marvel with your hair style. Thanks for your encouraging words about not giving up on finding things you love.❤️ Sorry for the long comment.😆

I have been following you on Instagram for a long time and I love your beautiful cosplays. I just found your channel here on RU-vid. Getting to see the end result of the hard work you put into your cosplays is great for me as two years ago I thought I'd never see again. No one was listening that my eyesight was getting bad again and finally one day I woke up and the blackness started, by that evening I was totally blind. Luckily, I had went to my fiancée's house that day and she and her parents got me to my ophthalmologist and saved my sight. Now after two surgeries and a lengthy recovery and learning to see again I look at cosplays like yours and am able to pick out derails I never noticed before. Little things like that make me happy. Now hearing your story... I realize how blessed I am to have the awesome doctors that I do. I do pray that you get as much help and relief as you can. Sending warm hugs and thoughts your way. Stay strong, stay awesome.

Thank you for sharing your story, Miss! And congratulations for being so strong, talented, and inspiring! YOU ARE AMAZING! ❤ I also have Hypermobile Syndrome, and a similar bone condition called Osteonecrosis - it's just the other way around: bone dies first, then, the cartilage. In my right hip it got to the severe stage, that's how they identified it. Much like you explained about your knee on the other video, it started as an annoying pain... that only grew worse... Only after 3 years of the diagnosis, when it was at crtitical stage, and I felt an unberable pain that didn't go away even with - fkng Opium-based - medication... Only then, 3 years after, I got my Total Hip Replacement surgery. Only after I moved, only after I found another Doctor. I feel blessed I found him, because he's a good Doctor and a good person! I feel better to know you also found one of these! They're rare, it seems! lol My life has been better after the surgery. But... I still feel pain from the other affected joints - the other hip and the shoulders - and no treatment or procedure was prescribed. My left knee also hurts, but no sign of Osteonecrosis there. It probably has something, but they cannot see it even through MRI, so they go: "nah, everything's ok with your knee". Familiar, right? It's been almost a year and a half since my surgery, but I still don't feel comfortable walking alone at the streets without an aid. If I have a family member or friend together, I can hold onto them, but if I'm alone I need to bring my walking cane. I don't know how the streets are, how the people and car traffics work in the U.S., but I can say: in Brazil, they're a mess. I'm afraid of tripping, or getting hit, whatever, and not having anything to help me not fall - to my death. Ok, 'death' part is a joke, I'm just afraid of accidents. Sometimes I feel I'm being too lazy - not training my mind to overcome fear and not building up my muscles to properly hold my own body together. Sometimes I feel I'm CHEATING! Even my Doctor had made me feel bad for bringing my cane to the last appointment. He said something like: "you should have already stopped using that". So, yeah... I can understand your journey a little because I'm kinda in a similar one. I know it's tough. But we can make it! Beautifully, artistically! Wearing cosplays of our favorite characters! Again, thank you for sharing your story! And your art! You've inspired me very much. I wish you all the best! Keep being awesome! ☆

9:37 yep that happened to my grandmother she went to see a doctor in January of 2017 about pain and cold-like symptoms the doctor said it was probably nothing sent her home and than a few days later she had a heart attack and died

I really appreciate you sharing this video, and I hope it ends up being fulfilling for you. I am in a very similar situation to you; I have been trying to get a diagnosis for two and a half years throughout consistent progression. I have seen dozens of specialists, and am currently seeing a great rheumatologist and a neuroimmunologist who may finally be able to figure out what is going on. It is very difficult to navigate the medical system and even more difficult when you have an unusual or complex disability. I hope you are able to find treatment that aids your symptoms and that you continue to have good and supportive doctors. Good luck with the wheelchair evaluation!

“I think I will continue to get worse,”- this hurts so much.

I have a lot experience with struggling to get doctors to listen to me. I've been sick and in pain since middle school. Without going into too much cause it's a long story but I'm 31 now, 6 surgeries later and not much has changed. I actually have had more diagnosis. Both physical and mental. A couple of years ago I woke up in SEVERE pain. I went to the ER and not even Dilaudid was working. I was pretty much screaming. I have a high pain tolerance since I've lived life in pain. They come in, take some tests and say they are sending me home. They didn't even do a MRI or CT scan. The lady wasn't a nurse and wasn't dressed as a doctor. When she left to get discharge paperwork a nurse who wasn't mine came in and told the person I was with to not let them send me home. To fight tooth and nail for an MRI. So bad lady comes back in and my partner tells her we aren't leaving until we get tests. She says ITS A WASTE OF MONEY and that It's just a UTI on it's "way out". But he kept fighting and they did one. She comes back and only says that they have to prep for surgery because my appendix was going to burst any moment. She was cold and mean about it. There was no apology. And then I had a laparoscopy 2 months ago for my endometriosis and they found 19 surgical staples just randomly stuck to the walls of random organs. My surgeon said its almost like the appendix surgeon messed up. Like something broke, the staple instrument? Who knows but I have the photos of them and there's just so many. Ofc he removed them for me. Anyway, this was way too long.

It's always mixed feelings when you get a diagnosis, like its weird to be thrilled that you finally have an explanation for why your body feels the way it does. I had x rays done of my hips and knees because I was having such bad pain there, and showed that I have SI joint osteoarthritis. Which is great because I have at least a small answer for what happens, but also this note was just left in my chart and no one called me about it. For me personally, I have more threatening diagnosis that usually trump my widespread joint pain (severe anemia and T1 diabetes), but I wish that the healthcare system in the US didn't relate all diagnosis as symptoms of one thing, instead of the fact that I might have multiple things wrong all at once.

I'm still in the process of navigating the australian healthcare system to figure out what's wrong with me and it's not much better than the US :( I hope every disabled person can get the diagnoses and mobility aids they need

Recently in December I got a diagnoses for hypermobile EDS from a geneticist I had a similar situation where I was in sports for years and then when I hit about 8th grade I kept getting injured way too easily then I got to freshman year of high school and had a lot of knee problems where it would hurt to go up and down stairs but I didn’t have an elevator pass yet because my school requires you have a pass to take the elevators then I dislocated my shoulder in my sophomore year the first time and then soon after went to a geneticist where they told me I had hypermobile EDS and that it gets worse after puberty the thing was we had a sneaking suspicion that’s what was going on because my aunts had gotten diagnosed with it so that’s the reason we even went in the first place also the doctor who put my shoulder back into place had told my mom that my joints were very loose so that’s why we went in the first place it’s not like they actually did any blood work or anything they just kinda screened to see if I had the symptoms and to see what kind of EDS I might have. and my dad just keeps telling me that it’s because I’m not exercising that I’m having all these problems

This really shows how f'ed up the healthcare system is, and that some doctors can't be trusted even if they're professionals. Most doctors either said you were fine or didn't know when it was kinda manageable, and it took them literal major handicap to try to help. I have an experience like this, just not nearly as severe or impairing. I think I'm suffering from seizures and tics and other neurologic disorders but my mom's latched onto this very specific neurologist who's ableist and refuses to give a cent on trying to find evidence on me, saying I'm perfectly fine without even giving me a second to explain not judgementally, and my mom's taking me to the wrong doctors, refuses to listen to my symptoms, and dismisses my experience when talking to a doctor. I literally was asked if I suffered from seizures and I was gonna say maybe but she immediately looked at me and said "no, never".

I want to give a shout out to all those good doctors who listen to concerns (even if there isn't strong evidence). I grew up and lived in the same area as you until about four years ago. I expressed concerns about developing something that my mom has (it's not genetic, but there is an increase chance I get it). My old doctor didn't seem phased about my concerns even though I have half the signs. Moved to a new state. Bam got a doctor who reminded me that this could take years for it to be confirmed, but that he agreed I showed signs and that I was to be tested once a year for before each annual check-up.

So good to hear you finally found a helpful doctor!

Having my own health woes i know i have Hypermobile Ehlers Danlos Syndrome since my mother has it and I've got basically all the symptoms but the last time i saw a Rheumatologist i was 13 and they refused to diagnose me however later this year im supposed to see a geneticist at the Fred Hutch Cancer center to scan if i have lynch syndrome too so i can finally start hormone therapy and also an Endocrinologist and also go back to see a rheumatologist at UW medicine and finally get tge EDS diagnosed i think im also supposed to see a cardiologist about POTS

I hate that healthcare has become you're not bad enough for help then wen you are it's too bad to help. I'm also hypermobile and have arthritis (can I get a full diagnosis of either? Nope that's too much) I've been in pain for the last 9 years with subluxation and dizziness commonly associated with pots. I've never had a scan or even been touched but passed off everytime and referred from pillar to post now I'm waiting on rheumatology again and hopefully this is the time 😂 but the health system suck when you are "young" and chronically ill

The video is very well done, hope things get easier 💜💜💜

You’re my hero.

I have Hypermobility Spectrum Disorder (the updated name for Joint Hypermobility Syndrome) and Isteoarthritis in my knee and probably my hip. It was a fight to get the Hypermobility Spectrum Disorder/Hypermobility Syndrome diagnosis lots of people have hypermobile joints without problems like chronic pain or fatigue or joint instability and lots of doctors don’t listen to patients. I’m pretty sure I have hEDS but it’s hard to get a diagnosis, to my knowledge hEDS is the only form of EDS they haven’t yet found the gene for so genetic screening can only rule out other forms without conforming hEDS.

Idk why but you would he a rlly good monaca towa cosplayer

thank you so much for sharing!

I wish this wasn't quite so relatable.

Real question, where did you get your skirt/shorts? (Not sure which it is) but they’re super cute! Also side note, doctors not having enough knowledge about EDS is obnoxiously common. I got lucky that my doctor that I’ve been seeing since before I was born is married to someone with EDS and sees a lot of patients with it, so he’s very familiar with it. Looked at my skin, the whole severe TMJ in 6th grade thing, and the whole GI issues since coming out of the womb problem (I had surgery at 2 days old for intestinal malrotation, fun), and the issue I brought up of hand pain that EVERYONE ignored as “overuse”. It didn’t make sense because the pain was sudden, I play 2 instruments and have ALWAYS handwritten my notes alongside drawing nearly constantly. If anything I was using my hands less due to not having piano competitions to prepare for. I do remember practicing when the pain suddenly hit, so I think I injured something because of the lack of consistent use and all that.

the joint asmr is icky but i enjoy a good popping every now and then 😂

you're not a karen for requesting adequate medical care, i'm so glad you found a competent doctor who actually listens 🫶🏾