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  1. 9 hours ago

    1) Our needs are not “special”. 2) Um, no? Disabled kids don’t exist to be teachable moments.

    Photo is of a child drawing a rainbow with a quote to the left of him, which reads: “Sometimes angels are disguised as kids with special needs to teach us how to be better people. -author unknown“
    20 replies 67 retweets 248 likes
  2. Aug 16

    Guys. I’m desperate. I really, really am. 18-29y/o US peeps, PLEASE fill this out. I need about 330 more responses. This dissertation is my entire future. Please help & RT!

    35 replies 889 retweets 410 likes
  3. Aug 12

    Honestly it's endlessly frustrating that being informed about my own body is seen as a red flag by doctors. Research is one of my main professional skill sets but I'm just supposed to pretend I've never googled my symptoms? Okay.

    11 replies 56 retweets 495 likes
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  4. 15 seconds ago

    I struggle majorly with communicating pain with words. Lately I've been experimenting with clip studio and color blending and it's felt cathartic. I've been compiling them into a binder to bring to appointments while I'm stuck in diagnostic hell. Anyone else relate?

    A color coordinated "pain diagram", using colors to draw on the default front/back/sides of a figure, it shows where I've felt numbness, pins & needles, burning, aching, stabbing pains. Has a second copy of the diagram with different colors to track weakness, muscle spasms, subluxation, cracking joints, stuff joints, and visceral pain. In the notes it says "right elbow locked yesterday unpacking groceries." There's also notes pointing to my neck that say "crackling, grinding", arrows pointing to my right forearm and hand saying "cold to touch", and a spot on the left side of my spine next to my shoulder blade circled with a note saying "constant stabbing."
  5. Aug 18

    My Mom made me rings from my Grandmother's silverware spoons. Always great to have extra spoons! Picture of one of them, saddle wrapped style ring, tiny daisies pattern on handle.

    3 replies 5 retweets 36 likes
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  6. Aug 18

    Going thru Accommodations Catch-22 again, in which I’m required to do pre-semester classwork, the instructor says I have to show an Official Letter for fall, and the Office of (In)accessibility refuses to provide Letters until regular classes start. WHY

    1 reply 14 retweets 78 likes
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  7. Aug 17

    anyone who experiences nausea have any OTC remedies? Asking for another chronically ill friend who just started getting it (chronic migraine related). Thank you!!

    39 replies 3 retweets 35 likes
  8. Aug 18

    For anyone else in survival mode, feeling like you are rolling a boulder up a hill everyday, and that’s become normalized to you 👇

    It’s wild to me sometimes that there’s no alarm 🚨 that goes off - for yourself, for doctors, for the community - when you get really, really sick. It’s surprisingly easy to slide down the scale and one day realize how sick you are. Happened to me.
    2 retweets 18 likes
  9. Aug 17

    Does anyone in the have tips for dealing with the excessive sleepiness? Like I fell asleep for 4 hours somehow and didn't even hear phone calls. Last week somehow fell asleep for 7 hours. I need to function somehow. I can't keep doing that

    11 replies 7 retweets 26 likes
  10. Aug 16

    Kids may not have the words or access to resources/information to be able to accurately describe their symptoms. Just because they don't have language doesn't mean they're making symptoms up.

    Fellow disabled people, what do parents of disabled kids need to know? I’ll start. I don’t care how desperate you are to send your kid to school. If they tell you they don’t feel well, BELIEVE THEM.
    8 retweets 17 likes
  11. 20 hours ago

    I've resorted to just downright crying or expressing exactly how I feel to any official person I'm dealing with, including from insurance. Sometimes himan emotions are more effective than legal precedents. Only sometimes though.

    3 replies 2 retweets 37 likes
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  12. 13 hours ago

    If you are experiencing pain or unexplained symptoms, I encourage you to continue fighting RELENTLESSLY until someone truly listens to you and offers you the advice and care you are deserving of.  You are worthy of healing.✨ Always have been. Always will be. 💝

    1 retweet 3 likes
  13. 7 hours ago

    Class Action for EpiPen. My failure in 2017 means I will join in! My sense of trust & well being have not been restored.

    3 replies 5 retweets 6 likes
  14. 19 hours ago

    We know we're not doing our utmost as a society when we're shamed, persuaded or forced to hide our sicknesses, encouraged by a lack of guidance from the professionals who are obligated to treat us not dismiss us when our case seems labyrinthine or beyond their resources

    1 retweet 9 likes
  15. Aug 18

    Trying to get diagnosed with a chronic illness can be an exhausting, frustratingly long process. Trying to fit the criteria for a diagnosis can feel like you're a square being moulded to fit a different shape, not everyone fits perfectly.

    9 retweets 16 likes
  16. Aug 15

    Of all the things my partner's SIL bought me I'm most excited for this. It's called the PathLight - it attaches to your cane or walker and lights your path while you move. No more counting stair steps at night!

    A purple cane with a PathLight attached.
    The top of the PathLight, attached to a purple cane. There is a green on button, a red off button, and 2 LEDs labeled Night Beacon and Low Battery respectively.
    Beige carpet being illuminated by the PathLight attached to the cane that is pictured from above.
    2 replies 3 retweets 20 likes
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  17. Jul 31

    I am finishing up an overdue design thing and accidentally found an old hobby project I started a while ago I just wanted a symptoms and illness tracker that made me laugh when I used it. This is just one page design

    64 replies 206 retweets 989 likes
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  18. Aug 17

    wheelchair users... How do u wash ur floors? I struggle lots with cleaning cuz of my limited mobility and I want to help out more and this is just a burning question lol. I can't stand longer than a few minutes if I'm lucky

    21 replies 17 retweets 58 likes
  19. 13 hours ago

    If you don't listen to your body's whispers, it will force you to listen to its screams. Even after 11 years of being chronically ill, I still need to be reminded of this once in awhile.

    7 replies 28 retweets 130 likes
  20. Aug 16

    is there a medical provider in NorCal who diagnoses hEDS? I’ve asked multiple medical providers if they would be willing to review the 2021 criteria and they all say it’s not their area of expertise. Not looking for a geneticist, just someone to do checklist.

    3 replies 4 retweets 16 likes

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