Join the Conversation on
391 people
0 stories
49 posts
  • Explore Our Newsletters
  • What's New in
    See full photo

    Post surgery question ? #ChronicIllnessEDS #EhlersDanlosSyndrome #ChronicPain #MedicalZebra

    I have made it 2 weeks since my ankle surgery to repair a few tendons and ligaments. I got my stitches out today, 30 total. I now have steri strips to continue healing of the incision. I have a few smaller blisters along the incision and one larger on my ankle bone where I've been having more pain from my walking boot. Surgeon said it's normal and nothing to worry about just to watch it. Has anyone had this happen ? #ChronicIllnessEDS #EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome #Surgery #Mobilityaid #Zebra

    14 reactions 6 comments

    Friday Vibes

    Good evening! I hope you all had a great week. No matter what you go through, you can choose how you'll respond. In all things, choose to be joyful. No one can take that away.
    #chronicillnesswarrior #imjoyful
    #patientadvocate #oleyambassador
    #Gastroparesis #RareDisease #tpndependent
    #EDS #Zebra #Dysautonomia



    So today I went to my gastroenterologist and found out I need further evaluation to rule out conditions before settling on ibs and treating that with antispasmodics they said I definitely am a zebra with the complexity of issues autoimmune cardiac mental health and so forth And though I said it in jest it's actually covering up insecurities and paranoia that I'm a fraud and my illnesses are not valid despite true symptoms and extensive meducstins and hospitalizations and procedure ice come to doubt myself because of doctors initially saying fibro and myalgic encephalitis don't exist as a teenager when I just wanted to feel better regardless of it's was mind or body driven but with the schizoaffective this has be become a deep seated paranoia that my doctors are out to expose me as delusional for there own laughs reality testing tells me this isn't true but feelings hard to shake the tests are producing a lot of anxiety like are they giving me placebo is this all a test I know it's just my diseased mind conjuring up these thoughts but his do you other "mighty warriors" cope and quell the obsessive tape of uncertainty playing in your head #schizoaffective #POTS #ChronicFatigueSyndromeampME #granulomaanulare #Zebra just want be back on the Oregon coast so ill try to meditate on that to get to sleeo


    ISO geneticist that will do EDS testing in the Kansas City area, but I’d settle forfriend who is willing to walk with me on my journey to resolution❤️

    #Dysautonomia #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #pelviccongestion #Zebra #ChronicIllnessEDS


    Lately My Ehlers-Danlos has been progressing quite rapidly. As it progresses, I can do less and less for my Children, who are 3,5,6,9, I feel guilt quickly setting in. I feel like I am not doing enough for them. Am I playing with them enough? DO I fall asleep too much when I should be reading with them? Do they get out of the house enough? I cannot help but wonder if I am doing enough when I am so limited by my chronic illness?

    Each day I get up and do my best for my family. I try to find new and inventive ways to get done what needs to be done, but still, I feel like I have to sacrifice self-care for the care of my family. Anyone else feel how I feel? Does anyone out there have tips or tricks to help me. I feel like I am failing my family especially my kids.

    #Zebra #ChronicPain #EhlersDanlosSociety


    The life of a zebra during a pandemic.

    Today I ventured out. Out into the cold, germy world after thirty three days inside my bubble. I wish it were hyperbole but my house is literally my bubble now. Where it’s clean and safe from other people and their risks to my immune system.
    But today, I ventured out to see my dr. I donned my mask and used my sanitizer as much as possible, hoping to avoid bacteria. A sneeze to my left, coughing somewhere behind me. The receptionist isn’t wearing a mask and either is the man walking in. Yay.
    Finally get my prescription and head out the door, next it’s onto the store. Haven’t been into one in over a month. My husband usually goes for me. But, today I ventured out. In I go with my mask on and prescription in hand. I plan on grabbing a few things while I wait. While looking at greeting cards I over hear, “I’m here for my covid test, sniff. Do I really have to drive through?” Of course the answer is yes.
    The clerk tells her where to go. She continues to shop the store touching everything and talking into her phone now… and to my surprise she’s another maskless citizen spreading the love. Speaking loudly of her covid symptoms coughing all the way… today just wasn’t my day to venture out now was it. Being a zebra means back into my bubble… sigh. #PrimaryImmunodeficiency #Zebra #RheumatoidArthritis #COVID19 #frustration #CommonVariableImmuneDeficiency #ChronicPain

    See full photo

    Wobbly legs, need braces!

    Hey everyone!

    I have #Undiagnosed hypermobility (either HSD or hEDS, diagnosis pending) and my limbs like to collapse in on themselves at very inconvenient times. My knees have been particularly bad lately and while I'm usually able to 'catch' myself on my other leg they've taken to collapsing at the same time lately where I have to grab onto supports.

    I'm seeing my doc on Monday to ask for a prescription for knee braces but I was wondering if y'all had any recommendations on type / brand that I can get her to write down? My insurance requires a lot of specificity and she's very good at following my lead but I need to know a few types before I see her to make sure I don't have to go back if it's not the right one for my (admittedly uncertain) diagnosis.

    I'm looking for something with lots of stability for wobbly, hypermobile, weak, and painful knees that isn't too bulky and is ideally under $200 CAD each (bc my insurance works with reimbursements and maxes out at $500/ year).

    If y'all have other recommendations for unreliable and generally annoying knees, especially when it comes to being able to go Christmas shopping and move between floors in my house, I'd love to hear em!

    #Hypermobility #HEDS #Zebra #Braces #mobility #Mobilityaid #knee #Recommendations

    See full photo


    February 28th is officially Rare Disease Day.
    All Zebras unite!!! Wear stripes to support yourself or a loved one who is a #Zebra
    For more information, go to rarediseases.org/rare-disease-day