LupusOrphan

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    Can We Get to Know Each Other a Bit?

    According to the hashtag system here, I was the person who first used the hashtag
    #LupusOrphan on the Mighty, and I'm curious about how it then came to be its own Mighty group (as I didn't start one), who the 40+ members are, and what their stories are around this hashtag. I created it because I lost my mother to complications of #Lupus about 10 years ago, though in many ways I lost her to it before I was even born, because of the horrible toll it took on her, and thus on all of us who loved her, too. Are any others here willing to share a bit of their story? #LupusOrphan #CHFOrphan #CPTSD #Potsie #Spoonie #panic #Anxiety #Depression #Fibromyalgia #CentralSensitizationSyndrome

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    My Biggest Triggers #CPTSD #panic #Anxiety

    Hi, Gang. Most of my #CPTSD issues are related to having to watch my parents die very slowly over many years of chronic conditions which--unlike mine, thank goodness!--were actually fatal. And one of the outcomes of this history is that when one of my loved ones is sick, it all flashes back to me in very visceral ways. Tonight, my partner (another Mighty) is in horrible pain, and though we know it's likely just a UTI, my whole being just clenches in terror. I'm using the skills I've learned in therapy, but this is always rough... I could use some support right now. Thanks. 🙏🏻
    #LupusOrphan #flashbackssuck #CHFOrphan

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    #Guilt and Remorse

    Before my own chronic illnesses became so overt that they were finally diagnosed, I was sometimes not as understanding as I now wish I had been of my mother's sufferings with #Lupus and other conditions. Does anyone else struggle with this, now that we know from the inside what it feels like, and what it's like not to be believed? #CPTSD #LupusOrphan #Anxiety #panic #Depression #Fibromyalgia #POTS

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    Don't Tell Me It Doesn't Hurt!

    <p>Don't Tell Me It Doesn't Hurt!</p>
    4 people are talking about this