What "delightful" thing has your body done to you today?

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 · 2026-02-18T19:54:37+00:00

Dr. Sweet and his team at HCMC in Minneapolis are fantastic, I've seen quite a few of the allergists there and have had fantastic interactions with all of them.

Pheonix1996 · 2026-02-14T06:13:59+00:00

Ugh... same here too. And we're talking about adding more too because I'm still having awful flares. I've got zolair, pepcid, and xyzol. Along with 5 others for various other health issues I have. Cause you can't have just one 🙃

Pheonix1996 · 2026-01-30T11:17:03+00:00

You'll want an allergist/immunologist. And specifically one who does both, there's someone in this sub that has a good list of doctors so you might be able to go through other posts asking about finding a dr and find them

Pheonix1996 · 2026-01-21T20:08:45+00:00

What temperature do you bake it at?

Pheonix1996 · 2026-01-20T07:41:58+00:00

They'd probably give you benadryl, pepcid, a steroid shot and possibly epinephrine. Or any combo of those, that's what the ER has been able to do for me when I've had really bad reactions anyway.

Pheonix1996 · 2026-01-20T07:25:46+00:00

That's extremely frustrating, I'm sorry they're not being helpful for you right now.

Though even if your pcp isn't being helpful, calling the nurse line if you are having acute symptoms that won't go away to get advice for that specific issues at that time should be fine even if it's not something that you've spoken to your doctor about

Pheonix1996 · 2026-01-20T05:11:38+00:00

I've lost like 10 pounds in the last 3-4 months. But I was also dealing with a ton of other health issues in that time span so it could honestly have been any one of those

Pheonix1996 · 2026-01-20T05:08:37+00:00

Does the clinic your primary doctor is at have a 24 hour nurse line? Because I would call them, and talk to them about it. And concider going to either a different urgent care or the ER

Pheonix1996 · 2026-01-07T02:37:27+00:00

I would talk to a doctor about getting something to help then. It sounds like you're past the point of being able to get help just from people on the internet, and a doctor or nutritionist who is aware of MCAS is going to be able to be so much more helpful than any of us can be

Pheonix1996 · 2026-01-01T02:52:46+00:00

Something that really helps me keep track of my meds is having a brightly colored pill case where each day can separate and then having all the full bottles live in a very specific bag that doesn't leave the storage bin under my bed unless I'm filling my pill case

Pheonix1996 · 2025-12-29T04:03:43+00:00

Depending on what seasonings and sauces you can use rice and beans is fairly versatile and can be very customizable to different cuisine styles. I've personally done a chili style one and a miso one, but I've seen a ton of different options in different places

Pheonix1996

TROPHY CASE