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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For me, getting out on my trike to photograph the sunrises is my favourite part of spring! ☀️
#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine
#Asthma
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#raynauds #MentalHealth
#Depression
#Anxiety
#ChronicPain
#ChronicIllness #Disability #DistractMe
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Today we mourn and fight. I believe everyone has the right to live and die with dignity.
#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine
#Asthma
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#raynauds #MentalHealth
#Depression
#Anxiety
#ChronicPain
#ChronicIllness #Disability #DistractMe
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Does anyone know the best place to go to get treatment for mast cell disease? Anywhere. I’m in awful shape and really need help but can’t get proper treatment so far.
#MastCellActivationDisorder #MastCellDisease #MultipleChemicalSensitivity #Systemicmastocytosis #MyeloproliferativeNeoplasms #ChronicMyeloproliferativeNeoplasms
Today is a day of awareness for rare diseases, of which I have a few. For those of you who belong to the rare disease family; Happy Rare Disease Day! 🥳💜
Anyone who wants to know more about rare diseases, click here: www.rarediseaseday.org
#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine
#Asthma
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #RaynaudsDisease #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe
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It has been a while since I have posted. There is an odd feeling to surviving. Almost a guilt, because I said my goodbyes, and was at peace with going, but my body was not ready to let go. My best friend ended up calling an ambulance, I was hospitalized for more than two weeks and released. I have been doing a ton of testing since. I have found an amazing pain specialist. Working with a great physiotherapist I got walking again. I am trying to spend as much time as I can with my family, friends, puppies. I am eating good food and playing outside. Pain levels are really high, but I am coping and finding all the joy I can. I am very happy that I get a second chance to find as many silver linings as I can. Life is as always, more good than bad.
#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #DevelopmentalDisability #DistractMe
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Last thursday I woke up covered in hives, we went to urgent care where i was given steroids. The next day it had gotten so bad I was throwing up and couldn’t get up and we went to the ER. They’re coming back as of this morning and I have no idea what is causing this or what to do, does anyone have any advice for mass cell flare up’s? #MastCellActivationDisorder
I think there are many factors that impact the choice (are they still hurting you, can you move past, do they accept responsibility and want to change…).
#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#CPTSD #FunctionalNeurologicalDisorder #Migraine
#Asthma
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #raynauds #MentalHealth #Depression
#Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe
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My daughter has dysautonomia, Raynauds, GERD, autism and more. She shows symptoms of MCAS, but no anaphylaxis or severe reactions. She has flushing, skin rashes to basically everything her skin touches, and itchiness. Could this be MCAS? #POTS #MastCellActivationDisorder #Dysautonomia
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Reading in Cleveland clinic website about POTS and read this: "In most cases, with adjustments in diet, medications and physical activity, a person with POTS will experience an improvement in their quality of life."
That struck me, Most cases?? Where are these cases? Is it really true for other people?? Is it just because I have other conditions that complicate my health? I don't know. But are most of you experiencing an improvement in quality of life with diet, meds, and physical activity??? I struggle every day of my life. I guess hEDS and MCAS don't make it easier. Just curious if you all find this statement to be accurate?
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