ohaicarolina

[ohaicarolina]

[ohaicarolina]

Yeah, I’d watch Muppets Lord of the Rings

[ohaicarolina]

I can’t remember if today or tomorrow is the anniversary of attempt #2 but it’s really good that I have therapy today because my brain is like “remember when youuuuu were the one who was going to get the highest educational achievement and be the golden child after all you had to work through? Remember how that all vanished because of your genetic code when you were 25? Isn’t it so FUN that the things that made you intrinsically you have also destroyed your future goals and dreams and even though you have realized that educational attainment is so relative it still just stings? Isn’t it FUN?”

[ohaicarolina]

I was almost intubated last night.

Because of mint hiding in strawberry toothpaste.

My blood oxygen was 87 with supplemental oxygen.

There was a doctor, two PAs, three nurses, and a respiratory therapist in that small room.

They brought in the crash cart.

I’d already had two epipens.

I barely remember them getting an IV in.

My mom had to park the car. I know I was frantic and asking for her.

They were talking about intubation if the 3rd epi failed. I’ve never been intubated in an emergency situation before.

The 3rd pen worked. Then they hit my mast cells with everything else.

I went home. I avoided intubation.

I’ve never been in active anaphylaxis at the ED. Normally it’s just remnants after giving myself two epipens. This is now the second time I’ve gotten an epipen in the ED. I also got one in an ambulance at one point.

My mast cells are getting more bold. The reactions are getting worse. They were prepared to intubate me.

…

I’m fucking scared. I fucking hate this.

#mcas #MCAD #mast cell activation disorder #mast cell activation syndrome

[ohaicarolina]

I am in the worst physical shape of my life

I can’t keep anything clean or organized because I’ll just have a spell where I’m too out of it or have an emergency and I’ll have to drop everything and then I’m too tired to fix it and it all builds up

I’m losing my favorite foods and flavors to MCAS rapidly but thanks to steroids I can’t fit into my clothes

I can’t do things with friends. I can’t do things outside my house. Last year I went to two concerts and I did have to recover from both but at least I could successfully go

My mental health is really bad. And it’s becoming harder to find positives in my future.

I’m so tired. Mentally and physically.

My body hurts from so much epinephrine

I’m so tired.

[ohaicarolina]

[ohaicarolina]

[ohaicarolina]

i need friends that want to go to the library with me & want to go to the aquarium with me & want to play board games with me & want to sit in silence with me & want to go grocery shopping with me & want to kiss me & want to live forever with me

[ohaicarolina]

IF GARFIELD WERE A CATGIRL SHE'D BE FAT!!!!!! SHE'D BE FUCKING FAT!!!!!!!!! YOU CAN'T FUCKING MAKE GARFIELD SKINNY!!!!!!!! WHAT THE FUCK ARE YOU DOING DUDE!!!!!!!!!!!!!!! GARFIELD IS THE ANTITHESIS OF SKINNINESS!!!!!!!! GOD FUCK FUCK FUCK FUCK!!!!!!!!!!!!!!!! AHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!! OH MY GOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I WANT TO HURT YOU REALLY REALLY BADLY!!!!!!!!!!!!!!!!!!!!!!!!!! AHHHHHHHHHHHHHHHHH SHE'S FAT SHE'S FAT SHE'S FAT!!!!!!!!!!!!!!!!!!!! OH MY FUCKING GOD!!!!!!!!!!!!!!!!!!

[ohaicarolina]

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[ohaicarolina]

[ohaicarolina]

I’ve just been so sick. And every time I have to call 911 it’s just embarrassing. I’m just tired.

And I miss bananas, and green beans, and cake pops, and peanut butter, and pineapples, and so many things with barley and malted barley flour, and mint, and red dye, and lime.

#@mesmerizinginnocence

[ohaicarolina]

I want it back. Fuck MCAS. Fuck EDS. Fuck POTS.

[ohaicarolina]

I long for the six months before I knew I was sick. I want it back so badly. I had so much hope back then.

[ohaicarolina]

I’ve lost track of how many ambulance rides I’ve taken.

I’ve probably given over 100 epipens by now.

My thighs are permanently bruised.

I’ve stabbed my thighs with trembling hands as my eyes are going dark, hoping the air will come back and this won’t be the final time.

I found out I get steroid psychosis, so they can no longer be part of treatment, but not until after they made me gain so much weight and I lost several days of memories.

I’m scared of every food and every scent because previous safe ones have flipped to danger.

I miss peanut butter.

Malted barley flour is in so many things.

I’m terrified that I’ll develop an allergy to Ruby.

The summer heat has closed my throat too many times.

Pictures from 5 years ago I was so genuinely happy.

This has taken over my life.

I hate this.

#MCAS #mast cell activation disorder #mast cell activation syndrome #MCAD #chronic illness #spoonie

[ohaicarolina]

[ohaicarolina]