junø @juno@pixie.town

When you’re allergic to everything and nothing all at once…. You may have MCAS.

Suddenly allergic to alcohol? Certain foods making you sick? Unexplained swelling and rashes? You may have MCAS.

Did you know you can experience anaphylaxis without ever having throat or facial swelling? I certainly didn’t! My first episode of anaphylaxis started in my gut and my heart - and I genuinely thought I had the flu.

I suffered for two days with unrelenting nausea and diarrhea, tachycardia, chest pain, shortness of breath and sweating. I lay in my bed desperately trying to force fluids down - but my throat was sore and swallowing had become difficult.

I finally relented and went to the ER - largely due to dehydration. Imagine my shock when the triage nurse took one look at my throat, stabbed me with Epi and whisked me into a code room.

I genuinely had no idea I was experiencing anaphylaxis. The throat issues felt just like strep and/or a bad flu. It happened so slowly that I didn’t even realize.

I wrote this article as a primer into the wild world of mast cell disease. These cells are everywhere in your body - contain over 200 mediators and can wreak havoc in a million different ways.

I hope it will help people better understand the condition - and I plan to write two more pieces which will explore in greater detail how to get diagnosed, how to treat it and (perhaps most importantly) how to learn to live with the constant threat of anaphylaxis.

https://www.disabledginger.com/p/when-youre-allergic-to-everything

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

I’m probably going to make myself unpopular with some people if i say this but we need to find a language of power, oppression and violence for the enforcement of circadian rhythm and the constant, entirely normalised torture enacted on those whose bodies cannot conform.

And I don’t think I am exaggarating when I say “torture”. Sleep deprivation is widely considered a form of torture, even though legal definitions are often lacking.

I mean like sure. Okay. Maybe it’s not torture to have to get up after 3 hours of sleep every day for a job because theoretically you have the freedom to switch jobs. Maybe it’s not torture to be woken up by construction noise after 1-4 hours of sleep 50% of the time, and be kept awake by similar noise the rest of the day, because theoretically you have the freedom to move.

But how do people with a late or non-24 circadian rhythm fare when they’re in a hospital? Care home? Prison? Places they can’t leave? How do children and teenagers with such circadian rhythms fare in countries where showing up to school at 8:00 at the latest is mandatory and enforced by police unless people comply?

Even if you’re lucky enough not to be in any of these situations, it is relentness. And we do not have the language, or even the social concepts, to talk about this properly.

If someone has an upstairs neighbour that wakes them at 2 a.m. every night and keeps going with the noise until mid-morning, this is considered outrageous, unfair, and while it’s usually very difficult to prove and enforce, it’s also illegal.

But if someone has an upstairs neighbour that wakes them at 9 a.m. every morning and keeps going with the noise until afternoon, this is… maybe going to draw a sad fatigued smile from other people with a non-normative circadian rhythm because we all know there’s nothing we can do, while everyone else will shrug and imagine we could just go to bed earlier. But morning people’s 2 a.m. is my 8 a.m. and this is not something I can change.

Even medical research leaves us completely alone. Not only is circadian variaton pathologized, but the research is generally just bad. I’ve never seen research on circadian differences that took into account the social factors or even considered the potential impacts of living in a society that’s hell-bent on not letting you get a restful sleep, at all, ever.

Instead, we get tautologies and popular knowledge such as “Before midnight is the most restful part of sleep, even for night owls!” which to those who know sounds a lot like “Straightening your spine until your chin is at least 165 cm above the ground is good for your back, even for short people!”

okay so, I've got my goals covered an my plans are in motion and even tho I've got some to spare, I've set them aside because I could still be kicked out any day. (haha, fun /s).

but this is still my birthday month and... I haven't really gotten me anything besides something I really really needed (like walking shoes... and walking shoes again...) forever. so I'll leave my links up this month and I'll use anything I get to get me something nice for my birthday!

links:

ko-fi - accepts paypal and stripe.
stripe (USD) - (for those that prefer not using paypal)

hashtags

#mutualAid #transCrowdfund #mutualAidRequest #blackMutualAid #boostPlease
@mutualaid

Die Redewendung "man freut sich tierisch" impliziert, dass es von der Gesellschaft als unmenschlich angesehen wird sich sehr zu freuen

Hey peeps who do make their own DIY injectables.

if anyone has done a thin-layer chromatography of a lab- or human tested sample of pure (un-mixed) Estradiol Enanthate or could supply me with a small known sample to make one myself, please hit me up.

Sexuality and gender identity are hard to figure out, Blahaj is soft to cuddle.

remember: The Closet isn’t privilege, passing isn’t acceptance, assimilation isn’t safety

every single one of us in trans fedi is traumatized by our experiences of having every moment of our lives turned into a battle for our own existence, and the way that collective trauma plays out within our queer communities is an age-old story, one that our elders solved during the AIDS crisis and we need to learn from.

there is so much more we can all be doing for each other to help ourselves and each other thrive and to help our community thrive. every single one of you needs to read this treatise by the Jane Addams Collective.

https://theanarchistlibrary.org/library/the-jane-addams-collective-mutual-aid-trauma-and-resiliency

Shout out to ace/agender folk who just looked at gender and said "yeah thanks, but none of that for me thank you"

Okay so friend of mine who I had planned to make some diy estrogen injection fluid with hasn't answered in days and while I am mostly worried about their wellbeing which is not a matter I am discussing here, I am also running out of Estradiol....

I still have one, maybe 2 weekly injections left, probably 3 if I stretch it out a bit and one bottle of gel that could last me about 3 weeks if I stretch it out. But in case we don't get to make the stuff for whatever reason I need to obtain some new meds...
I can get gel at any time from my doc but I really prefer injections since I'm on the equivalent of, idk, 8-12 pushes of gel a day... (9mg/wek IM)

So where did hrt.wiki move again after they lost their domain?

Or, if anyone has some vials to pass along in shipping distance to central Germany, I'd be glad as well.

Edit: It’s all good, we’re all set up to do the thing this week.