Sparrow Profile picture
Jul 10, 2018 12 tweets 4 min read Twitter logo Read on Twitter
[Food, dietary restrictions]

Working on a mind map of my #MCAS triggers

This is part of the fermented/Aged Food branch. One intolerance has a cascade effect on other foods.
[food, dietary restrictions]

This mind map thing is really helping me process some feels and I think also it's less "here's my huge list of food intolerances" more "a few categories that have many sub categories"

Which is helping ease my internalized ableism tbh
[Food, dietary restrictions]

I know there's a lot of overlap with mast cell triggers, so in case this helps anyone here's my current mind map of #MCAS triggers

Help with captioning is appreciated.
[Food, dietary restrictions]

Nest on my to do list is a map of acceptable substitutions for #MCAS triggers.
[Food, dietary restrictions]

Just preemptively : maybe don't tell me right now if I probably react to X if I react to Y.

I am still emotionally processing the cocoa thing.
[Food, dietary restrictions]

I feel really lucky whenever someone else cooks me mast cell friendly food

Because cooking is SO. MUCH. LABOR.

But it's also exhausting to try to explain what I can and can't eat

So I'm trying to streamline the communication process

#MCAS
[ food, dietary restrictions]

Also this is not necessarily a perma ban on all the things

I wouldn't be able to leave my house

It's harm reduction, and limiting how many triggers I'm exposed to at once.
[Dietary restrictions]

The metaphor my PT uses

Is that my body is like a bathtub, and the water is histamine triggers

It's important to both drain the tub (meds, mostly, and access hacks) and limit triggers (pacing, dietary changes)

So the tub doesn't overflow is flare up
This has also been (accurately) described as the Devil's Arithmetic

"My reactions on a given day are the cumulative product of the amount of irritation my mast cells have experienced in the previous day or two. There is always a running tally in my mind"

mastattack.org/2016/04/the-de…
[Ableism]

I know folks with IgE mediated food allergies deal with a ton of microaggressions around "but why are you eating X today if you're so allergic to it"

These microaggressions makes the whole "how much I can tolerate changes day to day" that much more stressful
[Ableism]

I also know there are stereotypes about "picky eaters", "special snowflakes", and "fake allergies"

My gf has literal tests documenting allergies and gets told "people aren't allergic to honey."

So the whole mast cell thing is...yeah
[Ableism]

I'm really lucky that my inner onion ring of support is totally accepting of my histamine triggers, and just ask questions when they're trying to understand better

Not like, to play gotcha

Everyone deserves that level of support.

#MCAS

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More from @UntoNuggan

Jul 28, 2018
I mean if exams are in blue books and hand written, and people taking notes on laptops and other accessible technology have trouble writing by hand, then this is ZERO SURPRISE but I bet @Lollardfish is right it's time for able academics to yell about laptop bans
"Oh but students who have trouble writing by hand can get accommodations via disability services--"

Did you know that accommodations require a doctor's note

And not everyone can afford a doctor

Also some professors are actively hostile to disabled students
I had this one professor who had an "absolutely no laptops" rule and i presented my handy note from disability services

But it was a tiny seminar

I was the only one using a laptop

My classmates asked questions about why I was exempt

It was awkward af

Laptop bans are bad
Read 24 tweets
Jul 23, 2018
Getting really tired of this thing where a marginalized person says "this will harm my community" and people say "you're exaggerating that hasn't happened"

then like a week later the thing happens. The same doubters are all WHO COULD HAVE PREDICTED THIS CALAMITY

🙃
The good thing is once you spot the pattern it's easier not to become one of those people WHO COULDN'T HAVE PREDICTED THIS CALAMITY because they didn't listen to / believe marginalized people.
It's really easy to personally break this cycle. Ready?

1. If a marginalized person says a thing will harm their community, believe them.

2. Signal boost and see if anyone suggests ways to help

Yes it is that simple
Read 11 tweets
Jul 18, 2018
Since it was apparently news to a lot of people that straws are used for accessibility (DESIGNED FOR IT, even)

Here is a partial list of common kitchen items that can help disabled people cook (that we self pay for)

#Accessibility
Kitchen thermometers : useful for colorblind people who can't discern the color of meat to test doneness

Also for d/Deaf people who want to test the doneness of bread but can't tap it to check if it "sounds hollow"
Waffle makers : because flipping pancakes requires a lot of manual dexterity and standing over the stove

These can be an access tool for those with back problems, chronic pain, coordination issues...
Read 27 tweets
Jul 13, 2018
[Eugenics]
I need environmentalists to hear that when they say "some sacrifice is necessary" to save the planet

& they're talking about *tools disabled people use to drink*

What I hear is "it's okay if you dehydrate if it's for the greater good"

I hear eugenics. 🙃

#StrawBan
If you ASK disabled people, we could maybe work together on lifehacks to save the planet that don't limit our access to hydration.

#StrawBan
Read 13 tweets
Jul 7, 2018
In case you are also chronically ill and planning for potential power outages or heat waves, here are some things I do or am considering doing for copes

Hopefully this will help someone else
It sounds weird but this dog pad is pressure activated cooling power. It requires no electricity and is reusable. (You can also make it RLY cold in the freezer.)

There are big dog sizes that work for my entire body

m.bedbathandbeyond.com/m/product/chil…
Consider filling a bathtub or bucket/tub with cool water. Dip your feet or entire body in to lower your body temperature.
Read 28 tweets
Jul 5, 2018
I don't want to yell at people when they offer alternatives to plastic straws, because i know the impulse is good.

but I need people to know that "what about ____ straws?" has joined "have you tried yoga?" in terms of emotional labor and irritation.

#strawban
It feels like maybe people think disabled people did not research or discuss alternatives to plastic straws before engaging in a protracted, exhausting campaign for "opt in for plastic straws" instead of a straw ban.

(We have a chart.)
Read 19 tweets

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