Common Variable Immune Deficiency

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Common Variable Immune Deficiency
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Where do you find joy in life?

Happy throwback Thursday, to happier times, when I was still able-bodied! I was in my early twenties & this was at the park. I had given birth to two girls before getting sick. Well, before being diagnosed I should say! I’ve been sick most of my young life. It just wasn’t until later on that it became more readily apparent. I used to love the outdoors & grew up near a lake. I was always very adventurous & outdoorsy growing up. It was my refuge. Now I’ve been entirely cut off & rarely if ever venture out. I stay isolated in my dark bedroom with little to no stimulation. My only access to the outside world is an iPhone. Ever since getting it a couple years ago my hands became deformed from arthritis. I have swan neck deformaties in my right hand & dupuytren’s contracture in the left. My elbows stay permanently bent & I have ankylosis of the shoulders. I have visited many orthopedic surgeons & upper extremities specialists to no avail. I have lost so much range of motion & mobility from chronic widespread inflammation. I’ve been trying to seek an official diagnosis for Sarcoidosis on top of my other rare disease. It’s very disheartening. #ChronicIllness #ChronicPain #ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Spoonie #CommonVariableImmuneDeficiency #Arthritis #ankylosis #Anxiety #Depression #Agoraphobia #BipolarDisorder #MentalHealth

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being chronically ill is a full time job.

I have been chronically ill my entire life. I don’t remember a time when I wasn’t battling some kind of infection. I was born with a rare disease known as primary immunodeficiency or PI for short. More specifically CVID or common variable immune deficiency which usually affects children. I wasn’t diagnose until the age of 28! I receive monthly plasma infusions of Gammagard through a chest port. It helps to maintain my IgG levels since I cannot produce my own antibodies. Basically it just means I’m prone to infections like pneumonia. #piawareness #Showyourstripes #zebrastrong #DonatePlasma #RareDisease #RareDiseaseMonth #InvisibleIllness

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I'm new here!

I'm a former Electrical Engineer and
Math/Statistics teacher, now that I can't work I knit, crochet, and quilt! I'm here to give and receive support, as my condition is very isolating. Looking for community!


I'm new here!

Hi, my name is Dana Henry Martin. I'm a poet, weaver, birder, medical writer, and patient advocate who lives with numerous health and mental health conditions. I'm here to engage with a community of like-minded folks who have similar lived experiences with health and mental health issues.

#MightyTogether #ADHD #Anxiety #AutismSpectrum #Bipolar1 #CommonVariableImmuneDeficiency #ComplexPosttraumaticStressDisorder #PosturalOrthostaticTachycardiaSyndrome #POTS #PTSD #ThyroidCancer

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I just stumbled across this. I found it to be a very good explanation of one of the things that makes us humans. And, YIKES, I am human!

#CheckInWithMe #MentalHealth #ChronicPain #Depression #Anxiety #PTSD #Epilepsy #CommonVariableImmuneDeficiency #MultipleSclerosis

23 reactions 5 comments
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I’m so scared

My family and I are being evicted because of disability discrimination. The IL Dept. of Human Rights is involved, but unfortunately that doesn’t undo the eviction. We literally no where to go. We’re going to loose all of our fur babies. And, I most likely won’t survive medically because I won’t be able to infuse my antibodies anymore. Last time that happened I was in the ICU for a month, but I also was a lot younger. My daughter has a rare form of epilepsy and special needs. I need to figure out if it would be easier on her to see a long painful downfall of me, or would it be easier if it was super quick? My husband and myself is all she has.
This is our story if anyone wants to know more background.

Help This Family Facing MS, CVID, and More - Patient Worthy

#Epilepsy #MultipleSclerosis #CommonVariableImmuneDeficiency #Anxiety #MentalHealth #Depression #Disability #ChronicIllness #ChronicIllness #ChronicPain

Help This Family Facing MS, CVID, and More - Patient Worthy

The Sam family is no stranger to rare disease: MS, CVID, UC, double cortex syndrome. Now they need your help. Here's why.
19 reactions 6 comments
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Trying so hard

I’m trying so hard. My mind says get going; your family needs you to be fine. My body says hold up, I’m definitely going to fight you on that one.
#ChronicFatigue #ChronicIllness #MentalHealth #Depression #CommonVariableImmuneDeficiency #MultipleSclerosis #Anxiety #PTSD

122 reactions 17 comments
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Spreading Smiles Hoping to give you one

I thought I’d share another smile maker of mine. Smiling is good, if even for a moment.
I find my fur family to be therapeutic
#MentalHealth #CheckInWithMe #Depression #Anxiety #PTSD #MultipleSclerosis #CommonVariableImmuneDeficiency #Epilepsy

59 reactions 19 comments