Aww, crap...I screwed up.

Reminder for anyone ELSE in the northeast w/severe bug bite reactions...*mosquito season is open.*

If you’re fighting your body on getting those deliveries in, remember that getting them in before dusk/a potential bite is MUCH better.
#MCAS #NEISvoid
Of course this happened w/the big delivery (the only water I can drink, until I see if a reverse osmosis system works), when I had to use the hook to keep the door open.

I’ve been so busy thinking of setting up🦟 window netting that I forgot about safe times to open the door🤦🏼‍♀️
@DanDanNoodles78 “ISS SQUITOS”😩
Update: Saw the ‘squito, wasn’t bitten at the time or last night🙏

Glad to have been able to remind others though...I’d totally forgotten the time of year with “still-mostly #QuarantineLife

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More from @BedboundQueen

1 May
.@POTUS, do you want to *truly* help all Americans? Here’s a great idea:

#Autistics are all too often unemployed, or underemployed- for reasons that are not their fault.

Start grant programs that will pay the tuition for #autistic teachers, therapists, & healthcare providers 1
Education & healthcare are extremely important, and autistics are often better understood by other autistics.

Studies have shown this. It’s referred to as #DoubleEmpathy. 2
Creating such a program would not only help to employ more #neurodiverse people, but it would also *allow for better services for ND students & patients,* because they’d have a better chance of being understood.

All while helping to #diversify the workforce.

Win-win, yes? 3
Read 5 tweets
1 May
Positive from a negative:
If you’re living #NEISvoid, #cfsme, or #LongCOVID life - and you have boty anxiety and a smart dog, #ServiceDog, #ESA, or #SDiT, here’s something that you can actually use as a way to benefit from a flare🙂
When I was stuck in bed with hardcore #LongCOVID flares, my SD could scent that I was sick, and would stay nearby...usually on the bed.

I’d luckily already had an “in case of bad days” setup to care for her, but I was often so sick I was only getting out of bed for the bathroom.
Being largely #poodle/just smart in general, she got used to the idea that “mom gets up, it means that she’s going to the bathroom.” And she would get up and go, often ahead of me, if not with me.

I DEFINITELY realized that this was a learning opportunity🙂
Read 5 tweets
1 May
.@TwitterA11y, people with disabilities need things to be accessible on BOTH ends.

The fact that the #AltText process is not easier on the writer’s end can make it difficult for #spoonie peeps & those with #cfsme to make posts that are accessible for the #VisuallyImpaired.
I know others are working on it, but with all of the algorithms out there, it should be possible to make viewable *predicted* text of what’s in a picture, so we can quickly approve it, or make edits.

That wouldn’t just “make life easier.” It’s about #accessibility & #autonomy.
#Disabled autonomy is more important than than many abled ppl realize.

So many things in our lives are based on the assumption that we “have someone to help us,” simply bc systems are falling short. It’s #ableist, & forces us to rely on others. We may not HAVE others available.
Read 5 tweets
1 May
People that have issues with #manipulation and #gaslighting, particularly my #ActuallyAutistic/ND peeps:
I HIGHLY recommend researching Game Theory. The free trial on The Great Courses is definitely worth it. If anyone can recommend good books/audiobooks, please mention below.
A big issue that I know I personally faced was being unaware of the idea that *not everyone uses the same type of points systems.*

Not being aware of this can make us extremely vulnerable to various abuses.
If your point system is for things like “personal freedom, honesty, integrity, helping others”...you can have a lot of issues if you encounter someone with a harmful point system of things like “control, manipulation, seeing others suffer.”
Read 10 tweets
30 Apr
#NEISvoid, recently found out that Singulair is available in generic form...I had the familiar “it helps but I’m having untenable reactions to fillers” w/the original. Has anyone had issues with the original and found success w/a generic?
This was years ago, before #MCAS set in (especially hardcore). But I still had an issue with fillers.

I need to look up the brand/possible generics, but I REALLY wish I knew what the problematic filler was. Even if Singulair was a different brand, I often react to TEVA meds🧐
I wonder if they (TEVA) often contain something that has a high incidence of reactivity? I’ve seen several people with a TEVA issue. I’d really love to get to the root of it.
#ChronicIllness #Mystery🧐
Read 4 tweets
29 Apr
Ok, I’m TIGHT, y’all. This is why I have less and less patience for FB nonsense.

Saw a meme about how people should be FORCED to get the vaccine.

Asked if they ever heard of MCAS, CVID, or tons of other rare diseases, and sent them this.
cnn.com/2015/05/01/hea…
Meanwhile, the whole thread was them *complaining they wanted vacations.*

While #disabled people have the fear EXISTING, & about being stuffed back in our homes. Some of us have anaphylaxis to vaccines, &/or studies haven’t been done on how it affects our (auto)immune conditions
**Having a rare disease, a condition that causes anaphylaxis, an immune disorder, or #longCovid doesn’t make you an anti-vaxxer for wanting to wait for studies on the impact of the vaccine on your condition, or to find out what the fillers are, to get the right shot.**
Read 5 tweets

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