#mcas syndrome

[thecanadianweeb]

HELP! I keep getting rashes for no reason at night and I’m not sure why.

I don’t think it’s an allergy cuz I’m able to breathe all of the time it happens, but I do get a feel of a rapid heartbeat even though it is a normal rate so it could be an allergy.

My dad thinks it’s a heat rash, but I’m not sweaty when it happens.

I honestly think it’s stress that’s causing it, as when I’m stressed, the rashes get worse and more severe.

I would go to a walk in but it’s closed right now.

I am also prone to panic attacks and I’m autistic, so I might not say the correct thing or know what’s up.

I also have to keep a doctor’s note with me wherever I go as people won’t understand that I’m autistic unless there’s proof.

And I’m still treated like a child when I have my meltdowns or panic attacks cuz apparently people might not take it seriously and make it worse.

It’s so bad that I’m failing my exams and classes in university and I don’t wanna pay extra money for an ambulance to take me anywhere if it gets really horrible.

I feel as I’m running out of time and might have to get my self institutionalized for my safety.

Idk what to do as chat spaces need cellular data and I don’t have that. Can’t use helplines either or my parents will dismiss it as a meltdown and turn off the phone.

I’m 18! I should be on my own, in my own house with access to all medical care FOR FREE!

But this damn country and cruel world made it that you have to pay for everything!!

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[teacupbug]

My controversial opinion is that I think chronically ill people should be able to fight one doctor a year

[pussysidon]

Living with a disability, especially a progressive or dynamic one is so fucking stressful. I don't know whether I'll be able to do things I can do now in a couple of years or even a couple of months. Maybe today I'm up and dancing but tomorrow I can barely leave my bed. I'm already grieving the things I know I won't be able to do in the future and it's so, so so so hard. The worst part is that there's nothing you can do but try to enjoy life right now and hope you can keep doing what you love

[thebibliosphere]

tw: content under a cut for talking about calorie counting (in a positive way), restrictive medical diets, and MCAS 'remission.'

So it's been 5 months since I last saw the GI doctor who took me seriously regarding my mast cell dysfunction, and not only have I gained a LOT of foods back into my diet under his care without experiencing idiopathic anaphylaxis, but I've also managed to eat 2000 calories almost every day for the last 5 months.

Prior to his care, since 2020, I had been mostly surviving on a liquid diet with the odd bit of solid carbs and protein when I could handle it.

Which was better than the 2 things I could digest safely prior to 2019, which were oatmeal and filtered tap water toward the end when I was dying. But even after I recovered from that, any time I went over 700 calories a day in solid food, I'd be writhing in pain.

I still have days when the pain hits, and all I can manage is liquids, but those days are so much less, and thanks to being able to eat more foods, I can at least liquidate more nutrients to make sure I'm getting what I need.

Things will never be 100% healed. That's not the nature of this kind of immune disease. But they're better. I'm better. I'm still so scared to say any of this is in remission because MCAS is wildly unpredictable. But I'm so much better than I was.

And I'm going to go happy-cry and eat a gluten-free cupcake about it.

[98lindsey]

Having a chronic illness that isn’t deadly doesn’t take your life. But it does take your life. 🫤

[stellaltumi]

shoutout to all the fellow disabled people who spread awareness and advocacy even when they have no energy to do so, I see you, I love you, and you are so deeply appreciated. your story has the potential to be someone else's survival guide.

[chronicillnessfromateensmind]

❤️🧡💛💚💙💜

[mellosakicc]

nu metal tees

for anon. featured bands in preview. if you don't see a band here it's probably been done separately.

some of these i squinted at but i'll be for real i just combed through the wikipedia list of nu metal bands bc im not a nu metal girlie

base game compatible

m&f - teen thru elder

enabled for random

custom cas thumbnail

download (simfileshare) | download (patreon - free)

[chronicallydragons]

Ah yes, my favorite chronic illness game: is this normal, is this new, or am I dying?

[stagegoose]

shout out to those of us chronically ill people who have stacks of rare diagnoses that took years or decades to dx. Shout out. to those of us in those categories who had earlier diagnoses questioned because of our other, at this point undiagnosed, rare illnesses.

To have a doctor look at something very concrete and telling of a certain diagnosis (for me, it was a muscle biopsy that showed a very obvious mitochondrial cytopathy) and go 'nah i don't think its actually this thing we have evidence of' because you also have another completely unrelated rare illness is gross and inexcusable.

If you are in this situation, i pray that things prevail for you. Remember that you know your body far better than any medical professional ever will, and that no matter what they say, you're not crazy for having inexplicable symptoms.

to deny the idea that someone can be doubly sick with three or more different rare illnesses when we know so little about genetics and all the different ways the human body can screw itself over is extremely and without a doubt idiotic. we all deserve better.

[cosmiccripple]

do you want to know what I miss, as a disabled person? the ability to have a hot shower without passing out and feeling extremely nauseous

just because there's nothing quite like a hot shower after a long and tiring day

[98lindsey]

I was out with my family for my birthday at a restaurant when I started having an allergic reaction. So I pulled out my IV stuff to give myself something to stop it and my dad asks:

“Do you want to go in the bathroom and do that”

I laughed a little “um, not really”

I understand it’s a little strange for me to pull out needles and meds and everything in public, but the restaurant bathroom is the last place I want to be when setting up something to inject into my blood stream 😬

Can we normalize people having to regulate their bodies with medication in public please?

[damn-it-not-again]

Going outside as a disabled person:

Pros:

Left my house

Did a fun thing

Saw a friend :D

Got new shirt and yummy candy

Cons:

Now have a mystery illness

Everything hurts the day after

Either had an allergic reaction to a mystery thing or I got overheated and my body decided "hmm... let's have hives about this"

So fucking sleepy, woke up at 3pm

[chronicillnessfromateensmind]

saw this and thought i’d share

*picture not mine*

[talkethtothehandeth]

If you wear strong fragrances in public I hate you ♥️