Mast Cell Activation Disorder

I’m not new here, but this is my first time expressing myself. I was first Dx w/ Fibromyalgia in 2013, I didn’t let it define me! I was hit hard in 2018 with #Gastroparesis . A few months later, Hypermobile Ehlers Danlos Syndrome (although I knew I had #hypermobileehlers-DanlosSyndrome(hEDS), I just didn’t know it was a disease… I was a gymnast childhood - early HS). Then came one diagnosis after another. Whammo!!! #POTS , #MCAS , Small Fiber Neuropathy, etc,. So from 2018-Present. I have 15 confirmed diagnosed chronic diseases. I have not driven in a little over 2 yrs b/c of POTS & fainting, & it really sucks!!
All of my local friends have gone. My college roommates (7) & I have a daily group chat going. Nobody (1 roommate does) ever checks in with me to see how I am. Everyday I’m completely #Fatigued . I have #ChronicPain everywhere!!! I’m #nauseous . I have #chronicdiarrhea & #chronicconstipation . I have #ChronicMigraines It hurts to walk. The rapid electric zaps from the #SFN is excruciatingly painful. My #RheumatoidArthritis & my #Osteoarthritis & now #Facetarthritis in my cervical spine has become so debilitating.

I don’t want to be a downer, but I would friends/family just to text & say "Hi, I was just thinking about you, I hope today is better than yesterday… remember I always love you!" This way they don’t have to ask how I am doing, thereby don’t get an answer full of negativity, but at least I know that I’m still in their thoughts!

I’m angry. I’m depressed. I’m sad. I’m lonely. I’m #housebound . I’m bored.

Being #chronicallyill totally sucks! Yeah, I’m having another #pityparty

I’m not new here, but this is my first time expressing myself. I was first Dx w/ Fibromyalgia in 2013, I didn’t let it define me! I was hit hard in 2018 with #Gastroparesis . A few months later, Hypermobile Ehlers Danlos Syndrome (although I knew I had #hypermobileehlers-DanlosSyndrome(hEDS), I just didn’t know it was a disease… I was a gymnast childhood - early HS). Then came one diagnosis after another. Whammo!!! #POTS , #MCAS , Small Fiber Neuropathy, etc,. So from 2018-Present. I have 15 confirmed diagnosed chronic diseases. I have not driven in a little over 2 yrs b/c of POTS & fainting, & it really sucks!!
All of my local friends have gone. My college roommates (7) & I have a daily group chat going. Nobody (1 roommate does) ever checks in with me to see how I am. Everyday I’m completely #Fatigued . I have #ChronicPain everywhere!!! I’m #nauseous . I have #chronicdiarrhea & #chronicconstipation . I have #ChronicMigraines It hurts to walk. The rapid electric zaps from the #SFN is excruciatingly painful. My #RheumatoidArthritis & my #Osteoarthritis & now #Facetarthritis in my cervical spine has become so debilitating.

I don’t want to be a downer, but I would friends/family just to text & say "Hi, I was just thinking about you, I hope today is better than yesterday… remember I always love you!" This way they don’t have to ask how I am doing, thereby don’t get an answer full of negativity, but at least I know that I’m still in their thoughts!

I’m angry. I’m depressed. I’m sad. I’m lonely. I’m #housebound . I’m bored.

Being #chronicallyill totally sucks! Yeah, I’m having another #pityparty

youtu.be/O9t0GhhjllA

My video on coping with pain and dysfunction.

#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #Migraine
#Asthma
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#RaynaudsDisease #MentalHealth
#Depression
#Anxiety
#ChronicPain
#ChronicIllness #Disability #DistractMe

youtu.be/memjDpJpG14

In my video, I talk about my journey from the hospital to my 9 km hike three months later.

#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine
#Asthma
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#raynauds #MentalHealth
#Depression
#Anxiety
#ChronicPain
#ChronicIllness #Disability #DistractMe

Not sure if that should say happy but today is one year since getting diagnosed with hEDS and I'm not sure how I'm supposed to feel about it . It has been a crazy year went from thinking everything was normal because that's what drs told me to finding out I have a defective body. Adding in meds that I never wanted to have to take, a surgery plus healing complications still 4 months out, discussion for another surgery, questioning everything I feel, did I always feel like this and ignore it or am I over thinking it. And extra diagnosis along the way. Answers are nice but sometimes I want to go back and pretend everything is OK. Sorry for the rant :) #EhlersDanlosSyndrome #Anxiety #POTS #allergy #HypermobileTypeEDS #MastCellActivationDisorder

I can smell the green of the grass and trees.
I can feel the last bit of the warm sun on my face and the slight breeze.
I can taste the cool water on my lips.
I can feel the twigs snap under my shoes.
I can see the beauty of nature all around me.
I can hear the birds chirping and honking.

#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine
#Asthma
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#raynauds #MentalHealth
#Depression
#Anxiety
#ChronicPain
#ChronicIllness #Disability #DistractMe