Mast Cell Activation Disorder

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Mast Cell Activation Disorder
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Was surprised a combined autoimmunity topic didn’t exist here yet. I live with PNH, which evolved from Aplastic Anemia, and also have developed MCAS (Mast Cell Activation).

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So tired of medical gaslighting #ChronicIllness #ChronicFatigue #Gastroparesis #MastCellActivationDisorder

I recently saw my GP, and he suggested that my problem might just be somatic symptom disorder, aka a psychiatric diagnosis created almost exclusively to label people with misunderstood illnesses as “being extremely focused on normal physical symptoms”. This isn’t the first time I’ve been told my illness is just in my head. And while I understand that mental illnesses are so so valid (I struggled with many for years, still do), it’s so invalidating to be told that because no one knows what’s going on, it must be psychosomatic. This is an established cycle: throughout history, whenever an illness is difficult to understand, it’s labeled as psychosomatic, it gets scorned, and it loses research funding. It just feels like my fate lies in the hands of people who care more about their egos than about my health. So tired.

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Resting Sunday Face

Could be a self portrait if I donned all the dresses and accessories I’ve bought over the years, that I’ve rarely had the chance to wear… but a gal can dream 🤍

#Spoonie #DistractMe #Meme #ChronicFatigue #MyalgicEncephalomyelitis #Endometriosis #MastCellActivationDisorder #Fibromyalgia #ChronicIllness #MyCondition #Insomnia

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Pharmacy Switch

I need to switch to a different pharmacy that will deliver to my home (I’ll probably use like Uber delivery or something…) I’m in the US. Does anyone have any input on what pharmacy has been the best for them? (Or conversely which pharmacies to definitely stay away from? Like I HATE CVS. They are the worst.)
I’m hoping for some info from fellow Mighty spoonies before switching. :) I’ve been using Walmart for years.


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What’s your relationship with your skin?

Did you know that your skin is your largest organ?

There are an estimated 3,000 identified health conditions that primarily affect the skin, and countless other conditions that involve dermatological manifestations.

Because the outer layer of our skin is just that — on the outside — skin conditions or skin that falls outside the “norm” can feel like it’s under more public scrutiny than some other physical and mental conditions. We’re also bombarded with advertisements for makeup and skin care that are supposed to fix all of our “flaws,” but really just drain our pockets.

I’ve had a complicated relationship with my skin since around age 10. Acne (yep, I had it as a preteen and it’s gotten even worse in adulthood), easy bruising and skin fragility, the odd case of hives here and there, constant irritation, and repeated skin infections have caused me to be quite self-conscious about the appearance of my skin. I’m working toward having a more neutral relationship with my skin, rather than viewing it as a source of constant shame.

How do you feel about your skin?

#Psoriasis #EhlersDanlosSyndrome #Eczema #Acne #RareDisease #ChronicIllness #CheckInWithMe #ObsessiveCompulsiveDisorder #BodyDysmorphicDisorder #MastCellActivationDisorder

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