iiinova — where your digital self keeps evolving

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.

121

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.

Turtle @turtle4life.bsky.social · 23/01/2026

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...

000

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.

100

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.

Turtle @turtle4life.bsky.social · 16/01/2026

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.

080

Former AZ sheriff Joe Arpaio & his posse of thugs used to do the same damn thing.

060

Turtle @turtle4life.bsky.social · 12/01/2026

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.

Turtle @turtle4life.bsky.social · 12/01/2026

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.

How to Make CACIO e PEPE PASTA (Perfect Everytime)

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

youtu.be

YouTube video by Vincenzo's Plate

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.

220

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.

230

I use Red Boat fish sauce and it hasn’t let me down.

020

If you can get Emmer or Durum flour, you’d get closer to historically accurate than if you used modern flour.

120

Italian Mustard - Ancient Roman Mustard Recipe | Hank Shaw

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….

honest-food.net

This is the mother of all Italian mustard, an ancient Roman recipe. Mustard, nuts and vinegar combine for a unique flavor.

220

Turtle @turtle4life.bsky.social · 24/12/2025

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.

000

Turtle @turtle4life.bsky.social · 24/12/2025

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?

000

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.

100

rahaeli @rahaeli.bsky.social · 21/09/2025

What? There’s a rescue inhaler that won’t kick my ass afterwards? That’s huge! TY!

130

Reposted by Turtle

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

synecdochic.dreamwidth.org

Captcha Check

381207381

Thank you! This is most helpful!

120

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.

260

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.

Turtle @turtle4life.bsky.social · 19/12/2025

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.

120

Turtle @turtle4life.bsky.social · 24/09/2025

Happy to clarify! Ty. The lecture is scientific. The idea that historical occupations may have led to the natural selection for autistic traits is my opinion. I like speculating that fiber arts predates Homo sapiens. Can’t prove it though.

Turtle @turtle4life.bsky.social · 24/09/2025

Wow! Beautifully & powerfully said. Audio only podcasts are usually a barrier for me, but I could fully follow what Yeshes said. I’ve read the research article. It’s a good summary. Not scientific, but I *know* that my brain was made for weaving. I’m no savant, but it is profoundly satisfying

Turtle @turtle4life.bsky.social · 23/09/2025

He has been in my thoughts of late. His book shone a bright light on the lived experiences of us older autistics. We are few in number. Suicide, poverty & chronic illness has taken so many of us. Why isn’t anyone else wanting to gather our history? Why doesn’t our collective wisdom matter?

070

Turtle @turtle4life.bsky.social · 23/09/2025

Some balm for our world-weary souls…. 🐢💜

000

I’ve been campaigning to convince my therapist that he should put aside Asimov & read Hitchhikers instead.

Thank you. I really needed to hear that. I moved from where my peer support work was well known to a place where there is no space or support for people like me. I naively believed I could be a change agent anywhere if only I pushed hard enough. My job now is letting go & accepting.

If asked to share, I absolutely will. Where I live now, feels overrun by ABA. No autistic community can thrive in the face of that. Autistic knowledge is not seen as valuable. Professionals take up all the space. :(

130

Totally valid. I am puzzled by younger generations’ belief of all emotions must be put online. Can’t see how that leads to healing & coping. Feels like an echo chamber. But I am old- I didn’t grow up with computers/ the Internet. Easy for me to take breaks. Guessing it is much harder for others.

000

This article really speaks to me and people like me,helps me to stay calm and purposeful.

That researcher from 2008, he was one of those dad-of-autistic-person professors, without any medical background, jumping headfirst into autism research b/c of the sweet, sweet cash....also claimed that cannabis could cure autism.

The "Tylenol causes autism" bs goes back to 2008. It was just as ridiculous back then. It felt like every other week, there was an announcement about what caused autism, along with what would "cure" it. I remember Broadstreet (Wakefield crony) saying tunafish sandwiches caused autism...

Turtle @turtle4life.bsky.social · 19/09/2025

Being that I am older, trans+autistic, I was approached several years back by a cis femme social worker who ran a trans+autistic support group for teens as a possible speaker. What topics did I want to talk about? I said, "How to deal with thoughts about death". Never heard from her again.

2151

While Cabaret and the Sound of Music are 2 of my favorite musicals, I’m not liking these reality show versions so much.

000

Turtle @turtle4life.bsky.social · 19/09/2025

You are so welcome! I got this at the fair, which was unreasonable for to me to attempt (though I was well-prepared). I rented a scooter at an unreasonable price, but it allowed me to relax and enjoy the day. I gently remind myself that Unreasonable is different than irrational.

001

Turtle @turtle4life.bsky.social · 18/09/2025

Update. Therapist firmly says “No, we will not be doing that!” to exposure therapy. He’s going to help me switch to a different prescriber. I know it will be a while. Worth the wait. Much reading to do about mast cells.

030

Gave myself an early birthday present. As most of my access needs fall outside of the narrow ableist definition of reasonable accommodation, ok, fine. I shall simply declare myself unreasonable and keep going.. 🐢 🌈💜♾️♿️ #disability

White Tshirt with airbrushed art created by an artist at the fair. flying turtle swimming among pink clouds and blue sky with the word “unreasonable” above

112

How play can heal your nervous system | Jessica Maguire BHSci, MPhysio | TEDxByronBayWomen

You don’t have to wait for his research to learn about the vagus nerve works…. There’s a TEDx talk given by Jessica Maguire. TLDR: Give yourself permission to play.

youtu.be

YouTube video by TEDx Talks

Today it’s called Floortime. I was 6 years older than my nonspeaking little brother. I was in a caregiving role from age 7-17. professionals for nonspeaking children then didn’t exist. My brother’s sensory diet grew way bigger than mine. He wanted to run, explore, climb, drive…