Hi, my username is corgiville, chosen for one of favorite books by Tasha Tudor. I'm here because I developed mast cell activation syndrome around 2013, which has almost completely paralyzed my intestines and has now started attacking my muscles, leaving me mostly homebound. I just discovered this site and I already feel much less alone than I have for the past 10 years.
#MightyTogether #CommonVariableImmuneDeficiency #PrimaryImmunodeficiency
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Hi, my name is razzle_dazzle. I'm here because we are better together
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Just need somewhere safe to vent.
I’m feeling abandoned by friends. I’m suffering through day 13 of severe covid right now and it just seems to annoy everyone. I have #PrimaryImmunodeficiency along with a few other health issues, so I tried extremely hard to avoid the virus for three years. It finally caught me. I knew I would get very sick, that’s not the surprising part.I’m just let down but the support from certain friends. People I thought would be more concerned or maybe even worried. I’m grateful for those who are, don’t get me wrong. Just still hurts. This is truly just a highlight upon what’s already been an existing fault line in friendships where I’m ignored. I’m the lesser friend because I’m “always ill” or can’t keep up. I can’t go biking or canoeing so I’m just not invited. During the pandemic spike I couldn’t leave my home so I was just left out… occasionally sent a photo of friends together tagged #wishyouhere .
They don’t understand how much it hurts to grieve a life you cannot live. Friends who just leave you behind like garbage. But then again, even the garbage gets to go out once a week.
#CommonVariableImmuneDeficiency #RheumatoidArthritis #Fibromyalgia #ChronicDepression #Anxiety #PTSD
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Common variable immune deficiency patient going on 8yrs. now. I wasn’t diagnosed until the age of 28 due to my own insistence after battling a lifetime of illness & infections. We are #zebrastrong ! I’m so happy to support #RareDiseaseDay ! @IDFCommunity #piawareness #CommonVariableImmuneDeficiency
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Hi, my name is DeadStar. I’m here because
#MightyTogether #ChronicIllness #ChronicPain #ChronicFatigue #RareDisease #InvisibleIllness #Disability #DisabilityInclusion #DisabilityRights #piawareness #PrimaryImmunodeficiency #CommonVariableImmuneDeficiency #zebrastrong #IVIG ##Spoonie #spooniesupport #Arthritis #ComplexPosttraumaticStressDisorder #Comorbidities #Anxiety #Agoraphobia
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Anyone out there that contracted Lyme before being diagnosed with Stiff Person Syndrome?? I wonder, could it be a cause???? #StiffPersonSyndrome #CommonVariableImmuneDeficiency #LymeDisease
For all of my CVID people.. do y’all struggle with just constantly feeling like $hit? Waking up some days and just not being able to get out of bed? Constant fever flashes and chills/shakes?
#CommonVariableImmuneDeficiency
Hi, my name is meganlkirk. I'm here because I live with 3 chronic illness and just added another one to the list… CVID. My lovely list consists of chronic daily mirgraines, lymphocytic colitis, dysautonomia, and CVID. I am about to start SCIG therapy. I joined because I want a community of people I can relate to, share stories and tips with, etc!
#MightyTogether #CommonVariableImmuneDeficiency #MicroscopicColitis #Dysautonomia
Hi, my name is CarolAnn. I'm here because I feel alone and would like to be in a community with others that understands
Just curious, have you ever been misdiagnosed?
If so, how did that label effect how you were treated by medical professionals?
Did it have any long term consequences such as difficulty obtaining disability?
Considering writing a short story on the negative impacts of being misdiagnosed. My experience led to years of delayed necessary treatments, medical gaslighting, and Inability to obtain disability.
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