I'm new here!
Hi, my name is corbynmayEDS. I'm here because I have an EDS, MCAS and POTS diagnosis and am interested in learning more about all three conditions :))
CT shows it is unlikely cancer in my lungs, they don’t know what it is, but that’s a problem for another day!
#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine
#Asthma
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#raynauds #MentalHealth
#Depression
#Anxiety #ChronicPain
#ChronicIllness #Disability #grateful
While I am waiting for results, I am choosing to focus on the joy of spring. The results that have come in are so up-and-down and all over the place. My thyroid is low now, and there is protein in my urine and I am going through periods of exhaustion so bad I can barely move. Tomorrow I will get the CT results for my lungs. Instead of focussing on all that, I am choosing to focus on the birds chirping and the sun shining! I hope everyone has a wonderful day.
#Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine
#Asthma
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#raynauds #MentalHealth
#Depression
#Anxiety
#ChronicPain
#ChronicIllness #Disability #DistractMe
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
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
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
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
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
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