#NEISvoid has anyone w #MCAS rxns to medical adhesives done a patch test? My #MCAS referred me to dermatologist for contact dermatitis testing bc I asked abt safe alt bc medical adhesives diff to avoid. Test req contact for days / not showering. Worried abt COVID safety & flare
[food] Note that my current MCAS flare - 16 months & ongoing - started bc I reacted to adhesive on my heart monitor. It was itching as soon as I put it on & I tolerated it overnight before all hell broke loose & has continued since. My diet has shrunk to like 5 foods etc.
Test requires putting on patches on my back on Monday. Then not getting it wet till Wednesday when they take them off. Then I get rechecked on Friday. I usually change/shower as soon as I get home bc COVID & the idea of not showering imm is scary.
Ugh ok I called mom. She’s also a doc but not a specialist. She’s gonna read up more on the testing but I think we’re thinking 48 hrs of a whole bunch of potential triggers on my skin is too much. Contact dermatitis symptoms are limited to the skin not multisystem rxn.
I v clearly have MCAS issues & so patch testing which may be safe for contact dermatitis may destroy my v precarious & v low baseline into another crisis by causing multisystem crash.

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More from @zeikonline

Apr 23
Quick PSA for social justice spaces that like to use meditative practices in your events:

They’re not safe for everyone.
Pls let ppl know what to expect ahead of time & let ppl opt out.
Body focused ones even simply asking ppl to take deep breaths can cause harm.
Here’s an academic paper that goes into detail abt some ways that meditative practices such as mindfulness can have negative impacts on certain groups of ppl:

brown.edu/research/labs/…
I specifically mentioned deep breathing bc it’s such a common way to tell ppl to ground themselves or be mindful etc & yet some of us can’t take deep breaths.

For me personally it only reminds me that my breathing sys doesn’t work well & I end up feeling distressed
Read 5 tweets
Apr 23
I’ve had an offer rescinded too bc apparently I was a bad culture fit for wanting to negotiate salary + absurd [& legally unenforceable] noncompete clauses in the contract. They were apparently not expecting a candidate to have a lawyer look over the offer 🤷🏽‍♀️
MIT career office who had introduced me to them & encouraged me to negotiate were so mad.

The company was a startup, Escape Dynamics, that no longer exists.
& their noncompete incl that I wouldn’t be able to apply for funding from any of their funders for x years after leaving

If you know anything abt space industry it’s that everyone is funded by NASA to some extent. So I’d be locked out of NASA funding for yrs after leaving
Read 6 tweets
Apr 22
when I went on my outing this wk passed by a beachside park & I thought ooh that looks like a safe outing option but I’ll have to find a rollator that works on beach.

Friends I’ve now discovered that an “all terrain” rollator costs $1000+

My current one was <$50

AAAAAAAH
Like I’ve been thinking abt upgrading mine to maybe one that was a couple hundred $ w some features I’d like [like brakes that can be set in position - brain fog lost words]
$1000+ is Highway robbery as they say. I’m offended both as a disabled person & as an engineer.

Like the design is really not something fancy. Neither are the materials. There’s no defensible reason it should cost more than a couple hundred at most.
Read 5 tweets
Apr 22
Ugh I hate govt disability gatekeeping so much. been on disability leave for couple mths. Filed California SDI forms early March. They have all info from my docs. But I haven’t been paid yet. Almost impossible to reach on phone. Got thru today & apparently new “security” measures
I got the form they sent for my doc to fill. But apparently they sent one to verify I actually live at my address & I never got it. No indication online.

So they haven’t paid me at all. I’ve used the EDD system a couple times before. No issues like this.
I asked the rep how long after I send the form back can I be expected to be paid. He said they’ve sent our 300000 of these letters so no guarantee could be a week, a month or more. They owe me $10000

If I hadn’t gotten my annual bonus from work recently I’d be totally broke
Read 8 tweets
Apr 22
I forgot to post abt outing yday after 5 mths bc PEM & also bc felt guilty for going bc no one was wearing masks & more ppl than I expected on Wed morn but I dressed up & went to see this spiritually moving chapel. I’m not even Christian but def felt God/dess’ presence. Photo of Zahra at Wayfarer’...Photo of Zahra at Wayfarer’...
Here’s a 360 video for better effect bc the bubbling rock fountain sounds really pulled the whole thing together. If COVID wasn’t a thing I would’ve sat down & prayed. I did quickly pray for my health but def an amazing place to sit regardless of religious beliefs.
Oh & I took outfit pics bc haven’t dressed up in ages Mirror selfie of Zahra in a...
Read 4 tweets
Apr 21
Has anyone seen a good write up on ableism promoted in public speaking coaching? Friend & I are talking abt video editing & removing filler words & my stance is that the “filler words are bad” idea is rooted in ableism. I found some articles ack some filler words are “natural” 1/
But articles also say whether it’s true or not audience interprets filler words as lack of confidence. & with this & other advice, I wanna be like perhaps the audience interprets it that way bc the audience has been repeatedly told to do so via schooling etc. 2/
Like I really wish there were less “body language” & speech pattern policing in public speaking coaching & more someone training audiences better. Bc a *lot* of these things seem rooted in ableism. Like even if filler words indicate nervousness, so what? 3/
Read 5 tweets

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