Before MCAS, I thought I knew all about histamine. Take an antihistamine, then you're good to go, right?. It's much more pervasive. Still trying to wrap my head around it. I look at my life, where I live, have lived, my health history, everything in a new light. I must sound like a nut.
An example. I just got diagnosed with MCAS. The new med which should only be reducing histamine in my intestinal mucosa, is also helping my sensory issues, especially auditory processing & speech. Functioning labels would call me less autistic. But if I skip 2 doses, I'm right back where I was.
We wind up with more labels. I'm a "difficult" parent. My offspring is declared "too complicated to assess" by neuropsychologists. How can anyone know how to identify how specifically autism impacts their life in a silo separate from all the other diagnoses?
Getting basic needs addressed means navigating multiple systems of care times 2, for myself plus my offspring. None of them talk to each other. Frequently they can cancel each other out, if you don't know the right words to use, at the right time, or have the right pieces of paper to turn in.
Functioning labels reduce myself and my offspring to a limited subset of our needs. It ignores the rest of what we live with. We have physical health challenges, chronic illnesses, mental health. Also, life stuff like being transgender, low income, ADHD. I'm an exhausted caregiver too.
What I do: ask the PT if they have worked with someone who has interoception challenges. I might follow that up with asking them to explain how they have accommodated someone with a brain injury. Autism isn’t a brain injury, but it’s a quick way to assess how well they can adapt.
Thanks to the SIGHI list, I've got the info for the low histamine diet. So that's a start...
Right now, the hardest part of being a MCAS newbie is figuring out which online resources I can trust to guide me on this journey. I don't trust integrative or functional practitioners on YT, & MCAS isn't taught in med school. My doc isn't available outside of appts.
Our family had Whataburger for Thanksgiving once (we were in the middle of a move). They are on the list of restaurants in AZ that I miss.
Parent groups can be the most ableist toxic places when they assume everyone else is neurotypical. When I came out as autistic, I was no longer invited to the parent lunches or asked to give workshops.
Former AZ sheriff Joe Arpaio & his posse of thugs used to do the same damn thing.
I went undiagnosed for 25 years until 6 weeks ago. It’ll be another 6 weeks until my next appt. Only resource the doc could offer is a NP that charges $400/hr. I’m on my own to manage & log everything. So yes, I’m using AI to help me. I have no other choice.
It keeps tourists out too. Last year my family and I visited NYC for the day, we left early because of lack of restrooms. The expensive dinner we planned to have in NYC happened in NJ instead.
Vincenzo’s my go-to guy for making Italian dishes. I would love to see him make this with Max on Tasting History. With long pepper, I think 30% more than black pepper is about right, but palates vary. youtu.be/Cu2R10CE_d8
Cacio e Pepe has few ingredients, but the technique requires some sauce making skills. If you are new to making sauces & gravies, practice with a béchamel with Parmesan & long pepper. Play with using pasta water in other recipes. Pecorino is pricey. Don’t buy it until you’re ready.
I’ve made Cacio e Pepe with long pepper and it was amazing. I also like it in vinaigrettes, especially with feta. It can get lost in a crowd of other herbs, so I tend to use it where it can have the flavor spotlight.
I use Red Boat fish sauce and it hasn’t let me down.
If you can get Emmer or Durum flour, you’d get closer to historically accurate than if you used modern flour.
Here is a mustard recipe I think you might like. honest-food.net/roman-italia... I haven’t made it b/c I’m currently on dietary restrictions where I can’t have vinegar. Someday….
Prior to my top surgery, I had the honor of supporting a friend through their experience. It gave me the knowledge I needed to be fully prepared for my top surgery recovery later on.
It’s funny how the myriad things that young kids do that drive parents up a wall, become nostalgic in later years. Maybe lean into it and talk to the kids about map reading skills?
Learning as much as I can about:
A) How to live with Mast Cell issues
B) What is the most reliable/affordable large format printer I can buy used for $500 or less?
Do you have a Kofi or Patreon or some way I can send you or your project a little money as a Thank You? You can DM me a link if that works better for you.
What? There’s a rescue inhaler that won’t kick my ass afterwards? That’s huge! TY!
The updated COVID/histamine link thread because people keep tagging me in to explain it and I keep intending to update the post from 2023 (synecdochic.dreamwidth.org/805203.html) and just not having the capacity because of my own health shit so here is a thread I can pin
Thank you! This is most helpful!
I’m new to MCAS, so that was my thoughts too. Everyday I learn there’s yet another piece of my complex medical history that happened because of MCAS. Ok, antibiotic reactions explained. More reading to do.
I’m also biased because someone close to me spent part of his adolescence wrongly locked up in a state hospital. His parents were religious zealots, he was a LGBTQ teen.
I’m rereading what I said. I over generalized. AZ has a big prison industry, so I knew ppl who took jobs in corrections. Not all, but I saw many changed from good ppl to callous monsters who savored cruelty. Those folks I believe would be drawn to ICE like a moth to flame.
A lot of ICE new hires are coming from corrections and law enforcement. They are the type of people who don't care what ppl think, they like being bullies without any constraints.