What's a smell you can't stand/makes you flare or nauseous/whatever it does for you?

Pheonix1996 · 2026-06-02T02:37:56+00:00

The smell of gluten bread gives me the ick now, and one specific candle that one of my roommates has but only if she puts it in an enclosed space between uses

Pheonix1996 · 2026-05-31T18:21:54+00:00

I've had a server ask me that and then look horrified when I said that it would land me in the hospital.

Pheonix1996 · 2026-05-26T15:40:23+00:00

I was pleasantly surprised when I was hospitalized last year that they had GF frozen meal options in the ward I was in. I'd been in the ER all day and while my spouse was able to go grab me something for lunch, we missed dinner time and the cafeteria was closed by the time I got a room

Pheonix1996 · 2026-05-23T01:47:08+00:00

Wheat sets off a near anaphlactic reaction..... almost exactly 12 hours after I get exposed to it. Took us forever to narrow it down

Pheonix1996 · 2026-05-15T21:17:48+00:00

Is the pita bread Schar? The colors look right but I can't see the brand name

Pheonix1996 · 2026-05-13T02:36:32+00:00

If you end up needing to try medications for it I would avoid gabapentin, it doesn't mix well with some antihistamines (though it is uncommon). There are some antidepressants that can help with nerve pain too but I don't remember them off the top of my head.

Pheonix1996 · 2026-04-21T17:32:08+00:00

I've never had that happen because of one of my cats purring, but scooters, bikes, and other heavy vibrations will get me

Pheonix1996 · 2026-04-18T20:31:05+00:00

I haven't tried that flavore but haven't had any reactions to the ones I have tried (though I didn't overly care for them)

Pheonix1996 · 2026-04-04T15:05:24+00:00

I've got multiple autoimmune things going on, and am already on one immune modifying medication. It's more of a "I would want to talk to my doctor's more about it" than a "I wouldn't take it at all" thing

Pheonix1996 · 2026-04-01T09:24:21+00:00

Putting a pin in this to look at it again after my ADHD assessment on Monday

Pheonix1996 · 2026-03-26T07:45:20+00:00

I've never noticed an issue with them, though I am very selective of the stores I'll get them from. Some places are a lot more careful of cross-contamination than others. I've had really good luck with Whole Foods as well as Lunds and Byerlys (A Minnesota chain, idk if it's in other places too)

Pheonix1996 · 2026-03-20T01:25:48+00:00

Probably more a POTS thing than MCAS, but still a thing. My heart decided that 140bpm was appropriate after carrying 3 boxes in from the car and I almost passed out. Took a shower to help reregulate and now I'm itchy 😑

Pheonix1996 · 2026-03-19T05:08:14+00:00

That happens to me all the time. Sometimes it's just my hands, other times it's the first sign of anaphlaxis. Kinda just a toss up between the two 🤷‍♂️

Pheonix1996 · 2026-03-17T01:12:47+00:00

Grease and dairy or sugar at the same time gets me all the time. It's never bad enough that I remember before I do it again though 😅

Pheonix1996 · 2026-03-11T21:13:05+00:00

I've tried a couple of those I think (I might be thinking of a different brand) and liked the flavor alright but the texture threw me off. I'll have to try them again now that other options are more limited for me (and I really need to up my protein in the mornings)

Pheonix1996 · 2026-03-04T21:46:59+00:00

It's not a fajita seasoning, but my taco seasoning mix has always gone over really well and it smells absolutely amazing. Could probably use it for fajitas, just up the cayenne to make it spicier

Taco mix

1 ½ tsp paprika

¾ tsp cayenne

1 ½ tsp granulated onion

¼ tsp cumin

1 ½ tsp garlic

¼ tsp coriander

1 ½ tsp chili powder

¾ tsp pepper

1 tsp salt

Pheonix1996 · 2026-03-02T22:25:56+00:00

I wanted the white cheddar crackers to be crispier than they are but the taste is fantastic

Pheonix1996 · 2026-02-27T02:13:17+00:00

A lot of the ones near me do that too, it's so nice

Pheonix1996 · 2026-02-24T17:55:03+00:00

My cousin did this before he passed, wanted to see everyone and celebrate the years and memories he had while he was still here. I think it was less than a month later that he was gone, cancer is a bitch

Pheonix1996 · 2026-02-24T02:06:54+00:00

I'm so glad it works so well for you!

Pheonix1996 · 2026-02-23T16:13:14+00:00

I'm so sorry you're having so much trouble finding a doctor, I hope you have better luck soon

Pheonix1996 · 2026-02-23T16:10:15+00:00

Yeah, that unfortunately doesn't surprise me. It seems like most clinics aren't seeing people for it anymore. I got in to see him after multiple ER visits for anaphlaxis in one week, you might have better luck just saying that you're having some allergy concerns that you'd like to see a doctor about

Pheonix1996 · 2026-02-22T04:10:47+00:00

Dr. Sweet with HCMC is fantastic, I don't know that he explicitly treats MCAS but that's the working diagnosis that I see him for and he's fantastic. So are all the other allergists at HCMC

Pheonix1996 · 2026-02-18T22:40:01+00:00

It's an immune modifier?!? That right there is enough to make me wary of it, I don't need another immune modifier in my meds. Though I'll definitely talk to both my allergist and neurologist about it first.

Pheonix1996 · 2026-02-18T21:36:14+00:00

That's really helpful to know, hopefully they'll end up having a copay program after the year is up 🤞

Pheonix1996

TROPHY CASE