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    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

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    Community Voices

    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

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    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

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    Wobbly legs, need braces!

    <p>Wobbly legs, need braces!</p>
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    Some Dreams Can't Come True

    Have you ever been on vacation where you got to just... step away from it all?

    I fantasize about that, but not too much, because then I get emotional. I think it's good to have dreams, even if you don't know that you'll ever reach them. Something to strive for can be uplifting, and a great motivator in life. It's different though if you feel like it's truly impossible, and that is how I feel about my dream vacation.

    The reason? My body would have to be there.

    To be fair, I've had some lovely getaways. I've never been on a fancy cruise, or flown away to some exotic local for a pampered vacay, but we've been blessed by friends who gifted my husband and I some time away from the day to day responsibilities. We had a view of the mountains, and very little out of pocket expense. Our pets were cared for, we had nothing on the schedule, and it was lovely.

    So what kept it from being the dream holiday? Pain, nausea, insomnia, medication schedules, subluxations, allergies, etc.

    It is one of the most difficult realities of my existence. The concept that I can never get away. I get so very tired. Sometimes I feel like I am parenting my own body, but I don't get the rewards of actual parenthood. Just the late nights, disturbed sleep, constant learning, tears, and talking to pediatric Dr's (because often those are the ones dealing with my conditions).

    Right now, my body is cranky, because it randomly decides to not digest anything properly, which is currently flaring, and that affects my ability to take my meds and/or absorb them properly, so I'm particularly hungry, sleepy, and my pain is especially high. I get tired of having to comfort myself with thoughts like "well, a lot of people with my comorbidities end up with a feeding tube, and at least I don't have to do that yet", while simultaneously thinking "that shouldn't have to be where the bar is set for what's 'good' with my body". Don't get me wrong. There is a lot of good in my life, just not the physical vessel I'm stuck in.

    #ChronicIllness #Chiari #Syringomyelia #EDS #HypermobileEhlers-DanlosSyndrome(hEDS) #Dysautonomia #Zebra

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