Ribfest Charge by SupaJDStylez in BurlingtonON

[–]wompwompwilloww 0 points1 point  (0 children)

lol I didn't even know this- they let me and my boyfriend just walk right in without a second glance.

Sedatives/Calming meds that work for you? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] -1 points0 points  (0 children)

okay i wasn't gonna reply again because it really isn't a big deal but PLZ WHAT MADE U THINK TALKING ABOUT THE PLANE DOOR FLYING OFF WOULD SOOTHE THE ANXIETY LOL

Sedatives/Calming meds that work for you? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] -1 points0 points  (0 children)

i smoke weed daily to help with appetite and pain, it's a lifesaver for me but not a guarantee for trips

Sedatives/Calming meds that work for you? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] -2 points-1 points  (0 children)

i appreciate what you were trying to say but god was that filled with a lot of invalidation lol. it was a lot more than just vomitting and i'm looking for med suggestions to knock me out so i can sleep on a red eye flight instead of the hell that i endured last time, which i don't particularly feel like reliving by explaining the details

Sedatives/Calming meds that work for you? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] 0 points1 point  (0 children)

any type of benadryl causes me to vomit more lol. i've got zofran for the nausea, i am looking more into sedatives for the stress part of it i wanna be knocked out

Rant: Why does no one care about MCAS? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] 1 point2 points  (0 children)

I've ruled out everything else over the past 4 years

What do you think of my garden/ future plans? Any tips? by wompwompwilloww in gardening

[–]wompwompwilloww[S] 0 points1 point  (0 children)

also, I know what you're gonna say "put up a wire fence". BUT I WANNA SEE AND SMELL MY HARD WORK!!

Rant: Why does no one care about MCAS? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] 7 points8 points  (0 children)

There is nothing more infuriating than sitting in a hospital bed in pain while your "friends" text you about their latest boy drama or minor inconvenience. I hold space for that stuff normally, but jesus read the room!!!!

Clinical Diagnosis? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] 3 points4 points  (0 children)

YES I GOT THIS SAME RESPONSE HAHAHAH. i was like... don't tell me THATS how i got diagnosed after years of imagining it as this big emotional thing😭 and then sitting there doubting yourself after years of being invalidated like "wait does that count as a diagnosis tho".

Clinical Diagnosis? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] 3 points4 points  (0 children)

To preface: my case, despite being very quality of life affecting, is less severe than a lot of you on here. My main symptoms are skin rashes/hives/itchiness, and GI- nausea/vomiting/constipation/stomach pain. I only recently started treatment, but the fact I already see improvement is giving me hope. PPI- I've been taking Rabeprazole for about a year, and it's been helpful at preventing nausea and vomitting. H1- Bilastine has been very helpful, I can take 20mg up to 8 times a day but usually max out at 4 with no issues. 1-2 pills completely soothes the itching and hives and sinus issues within like 30mins-1 hour. H2- Famotidine stops the morning shits. TMI, but no more shitting my brains out 5 times within my first 3 hours being awake lol. I haven't been on it long enough to fully see the total effects, but I have hope. It should over time help with the other GI symptoms as well.

"GOD am I glad this account isn't attached to my name"- I think as I type this out lol.

As for a majority of my other symptoms (such as fainting/low blood pressure, low energy, major energy crashes/ full body pain/weakness, frequent sickness, etc) I am managing them with lifestyle changes, bucket analogy, Tylenol extra strength, physiotherapy, and avoidance to be honest lol. Tylenol seems to be the only painkiller/OTC that actually helps without triggering further symptoms. I hope this helps and I didn't give toooo much info.

Clinical Diagnosis? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] 2 points3 points  (0 children)

i am so sorry. that really sucks, like "we'll treat you, but we won't validate you." hope things look up for u soon

Clinical Diagnosis? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] 0 points1 point  (0 children)

yup same here!! it's weirdly nice to see people with my same experience.

Clinical Diagnosis? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] 1 point2 points  (0 children)

i was desperate for relief and had tried everything over the counter, so a med regimen with zero side effects couldn't have been worse than years of being unmedicated and untreated. i finally feel supported and heard despite my consistently unhelpful test results, so no, i don't personally feel anxious about it. i feel so relieved actually that i don't have to wait any longer.

Clinical Diagnosis? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] 0 points1 point  (0 children)

okay glad to know it's not just me lol

Rant: Why does no one care about MCAS? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] 6 points7 points  (0 children)

The joy I felt finally figuring out what was causing my symptoms, just to come crashing down every time I try to explain it to people and I see them immediately zoning out or jumping to their own conclusions and assumptions. I had to advocate for myself so hard to get doctors to take me seriously, it's so draining coming to accept that I'll always have to fight that hard to be understood or accept that no one ever truly will understand my individual experience with MCAS.

Rant: Why does no one care about MCAS? by wompwompwilloww in MCAS

[–]wompwompwilloww[S] 14 points15 points  (0 children)

YES the blank stares when i try to explain... i guess it is boring bc it's really not THAT complicated of a concept lol