Это видео недоступно.
Сожалеем об этом.

#ehlersdanlossyndrome

Поделиться
HTML-код
  • Опубликовано: 17 авг 2024

Комментарии • 35

  • @sprinklesTheCrowGirl
    @sprinklesTheCrowGirl Месяц назад +89

    Years ago I went to an event that was about helping chronic pain and community. It was run by 2 women, one of which had a kid with her which was fine... except her kid kept stealing my cane and saying "not yours!" at me. I got injured. I wish I had asked for a refund.

    • @taleef1760
      @taleef1760 Месяц назад +9

      Refund? Damn you should have sued or something.
      Like yeah he's a kid but the mother was 100% negligent and if she had watched her child it would have been prevented.
      I'm sorry that happened to you!

  • @pokezette7785
    @pokezette7785 Месяц назад +102

    trip you!!!???? Excuse me!!!!

    • @erzsieke
      @erzsieke Месяц назад +14

      fr like why are kids so weird?! that could seriously injure her (or anyone really for that matter)

    • @sprinklesTheCrowGirl
      @sprinklesTheCrowGirl Месяц назад +14

      It's happened to me. I think people (not everyone) really have it set in their head that anyone not a senior citizen, or anyone with a mobility aid that's able to move with ease must be faking it. I wish they didn't have to "test" if we're faking.

    • @looberdoober
      @looberdoober Месяц назад

      Kids really are jerks, but a lot of them don't really understand that what they're doing actually does hurt people.

  • @Fable.
    @Fable. Месяц назад +18

    Idc how old they are, anyone that tries to trip me as a disabled person is gonna be the one on the pavement instead lol
    Seriously tho thats heinous oml

    • @RikerManeuver
      @RikerManeuver Месяц назад +3

      100% even a very healthy fully able person can be seriously injured from tripping......hope those kids get sorted out!
      I don't use mobility aids but I have in the past from injuries. One time I was on crutches and slipped down some stairs in school and Noone offered or even talked to me they just ran past, people a strange.

  • @maetessier9532
    @maetessier9532 Месяц назад +16

    So this reminds me of the time when i was 20 and i had a condition in my hip. It started when i was 16 and thats how long it took to get a doctor to believe me and not say its just growing pains from puberty.
    But anyways, i was 20 and the joint had given out completely so i used a cane or sometimes crutches on bad days. Had to go to walmart for a handul of things and it was later at night so there weren't many scooters available. I tried the one but it kept dying every 10 ft. So i just went on my crutches and hubby walked slow. (Bless him!)
    Half way through our shopping trip, a lady was calling out to us and chasing us down in the scooter. Very slowly as it died every 10 feet so shed turn it off and back on again.
    We thought it might be important so we waited for her... she literally only chased me down to tell me i didnt want the scooter because it kept dying.
    I was baffled but said something along the lines of "yeah, thats why i left it to charge at the front..."
    She started asking why such a young lady like myself was on crutches without a boot or knee brace. I told her its none of her business and wed like to go shop.
    She kept asking what doctor i was going to (when she didnt even know what for). She was following us with the scooter for a bit. So hubby and i winked at each other, then when the scooter died again, we walked as fast as i could manage to duck into the crowded clothing aisles where her scooter couldnt maneuver.
    Later, we saw her walk out completely unassisted. No cane or walker or anything. She looked to be in her 30s, maybe 40s. But no limp or anything. And she speed walked too. I think she was one of those people who are lazy and take the scooters when they dont need one.

  • @sadalynlyons4562
    @sadalynlyons4562 Месяц назад +4

    i have EDS and autism and honestly finding your channel is such a relief and opening my eyes a bit. never looked into pots before you, only knew i had EDS bc my dad and grandmother both have it and i’ve suffered with many a dislocation/sprain and partial dislocations over the years that made it more apparent i also suffered with it. i often have fainting/near fainting spells or even my vision/hearing go, but i retain consciousness, which has made me come to the conclusion after a few of your shorts i may also suffer with pots and should definitely look into it with a primary.
    (been diagnosed formally with autism in elementary school even having a teacher aid due to my nonverbal communication issues and struggle with reading. diagnosed with EDS by a physical therapist after being assaulted and suffering a partial dislocation and whiplash, don’t need replies about self-diagnosis)

  • @mellobun
    @mellobun Месяц назад +10

    I have hEDS and I'm still trying to figure stuff out so I really appreciate advice like this, thanks, I wouldn't have thought of the lanyard but even like a retractable thingy that can go on my purse would be helpful.

  • @DownBadAutistic
    @DownBadAutistic Месяц назад +6

    I'm hypermobile/double-jointed plus nearly faint if I stand for too long and my doctor laughed when I told her I bought a cane 😭 like what else am I supposed to do?

    • @RikerManeuver
      @RikerManeuver Месяц назад +2

      Good on you for taking the initiative and getting a cane for yourself! The Dr laughing is silly, I hope the can helps you!

  • @colleenmeiring2604
    @colleenmeiring2604 Месяц назад +1

    Salem is so chill! 🖤🤗🖤

  • @isatq2133
    @isatq2133 Месяц назад +13

    Does your cane glow in the dark? It looks so cool!

    • @shotaaizawa341
      @shotaaizawa341 Месяц назад +3

      I’m pretty sure it has lights in it

    • @staceyfell7666
      @staceyfell7666 Месяц назад

      I think its a brand names neo walk they have glow in the dark , multiple different lights and so many other cool things.

  • @4727i12
    @4727i12 Месяц назад +1

    Sorry for being so off topic, but your cat is such a cute sleepy little cutie!

  • @elisabethblackwood3921
    @elisabethblackwood3921 Месяц назад

    That's a good idea, I have POTS and use the electric shopping carts when I'm at the store. I once had some guy tell me "fat and lazy isn't a disability".
    Now I just order all my groceries for delivery and rarely leave my house

  • @HisStargirl._.
    @HisStargirl._. Месяц назад +19

    Salem is my future daughter’s name!

    • @ashtoncullinan5946
      @ashtoncullinan5946 Месяц назад +1

      Salem is a lovely name. I’ve always wanted to be a dad and I plan on adopting 2 kids and naming them Emberly and Salem. Beautiful name!

    • @HisStargirl._.
      @HisStargirl._. Месяц назад

      @@ashtoncullinan5946 omggg I’m naming my second daughter Emery!

  • @JesusChrist-sm4bm
    @JesusChrist-sm4bm Месяц назад +7

    Yhea Always even if you arnt "that disabled" you should have medical info on you
    I can't have penicillin. I SEW into my bags, wallet. Have a lanyard and I sticker on my phonecase that I have Turrets, Autism, and I can't be exposed to any mold or I will start to have a harder time getting adequate air (I won't die but labored breathing and not getting enough oxygen in my blood isn't good either)

    • @RikerManeuver
      @RikerManeuver Месяц назад +1

      Definitely! Having any serious allergies would be enough to worry about on a normal day, let alone if something happened and you couldn't tell people. Did you get your information printed onto fabric so you can sew it in?

  • @Imboredandgay.
    @Imboredandgay. Месяц назад +8

    I love your channel so much! I have Blau syndrome which comes with mobility issues(if you want to look up Blau syndrome the images might be slightly disturbing for some people) and one of the side effects of being a chronically Ill teenager is that literally no one believes me when I say anything. Your channel has really helped me with a lot of things related to being chronically ill. Thank you!

  • @Jynxedlove
    @Jynxedlove Месяц назад

    I keep my info on my service dog's vest, since lanyards weigh down my neck/wrist too much.

  • @FairyFruitTea
    @FairyFruitTea Месяц назад

    i love this so much😊

  • @xXLuciBearXx
    @xXLuciBearXx 28 дней назад +1

    Nothing to do with the context of the video I just wanted to mention I love your headset, I really wanna a pair but like as a closeted femboy I can't have em cuz I'm just to scared of being judged for having them 😔

  • @user-hi7le7bv6q
    @user-hi7le7bv6q Месяц назад

    You're very cool!

  • @rosequartz3648
    @rosequartz3648 Месяц назад

    Plssss tell me where you got your stud piercings from

  • @AnneliezeHayes504
    @AnneliezeHayes504 18 дней назад

    I HAVE IT TO❤

  • @matildacb624
    @matildacb624 Месяц назад

    You also have cbs
    Cute bangs syndrome ❤

  • @ironman_546
    @ironman_546 Месяц назад

    This might be good for content but please don't feel like you HAVE to answer, just seems like you're open to questions. What happens if you take collegen? Could that help you? Could it hurt you? I take the amount you would take for joint issues (so 15mg which is A LOT of collegen a day) because it helps with scarring from surgeries, keeps my skin hydrated, and well, the joint problems. Do you know if taking that large of a dose could help? Would any dose help? I'm chronically ill in different ways and nuerodivergent and it's one of the few things I can take with no physiological side effects.

  • @unholyzoe
    @unholyzoe Месяц назад

    My name is also Zoe! Hello fellow Zoe!