♤Maya♤ | filipino•aroace•they/she | ~ struggling to live normally every day ~
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the person who posted this on here is a terf so im reposting it because its really really good
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69 cities in the united kingdom and forty seven thousand pubs
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My Pokemon head canon is that if you were holding an Aron and she wanted to go down she would do the little cat thing where they wiggle until they leap out of your arms gracefully except Aron is made mostly out of solid steel and would land with the impact tungsten cube, dent the floor, cause permanent structural damage to the foundation, and then stand up and happily trot along like she didn't do anything
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my dad got a clear phonecase for himself so I let him have one of my pokemon cards to put inside it, and after making me explain what each pokemon did and was he picked a basic lightning energy card
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One thing about SJS/TEN that makes it so much harder to live with post "recovery" is that medical treatment become a fucking minefield because you don't know what medication you would need for any issues you have and if it's something new, you don't know if it's going to make you suffer or straight up kill you. When I got scratched by a stray cat I legit had a crisis on whether I should risk dying from more severe SJS/TEN or dying from rabies and luckily anti-rabies shots didn't fucking kill me with SJS/TEN.
#mayaposts#steven johnson syndrome#toxic epidermal necrolysis#sjs#ten#rabies#to be clear it was a no brainer thay i would get the shot regardless bc although fatality rate gets higher with each subsequent ''episode''#of sjs/ten rabies has a 100% fatality rate#like the the stray cat thankfully didn't had rabies bc the cute little asshole's still chilling in my grandpa's house but we just couldn't#risk it at all like i don't want to die obv#chronic illness#allergies#allergic reaction
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I do say SJS when very likely my condition was closer to maybe toxic epidermal necrolysis (TEN) because more than 10% of my skin was affected (both my arms, my face, my torso) but I use SJS because it's the main diagnosis my team of doctors operated on. Either way, regardless of whether it was SJS or TEN, I would not wish any fraction of my pain, fear, and suffering on even the worst of my enemies.
#mayaposts#steven johnson syndrome#toxic epidermal necrolysis#sjs#ten#allergies#chronic illness#<- tagging this bc it leads to chronic illness + pain#allergic reaction
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As bad as this condition is though, I am open to answer stuff about it based on my own experiences (within reason) because there's just... so few things for this condition out there even within tumblr. I don't think the very few blogs that discussed themselves having SJS are even active anymore.
Being someone who became severely disabled from a very rare (only about 2-6 cases per million people) and barely researched condition (people still don't know why it happens with most people only knowing about it from the lyrics of a will wood song) anything about my condition is so lonely and anxiety-inducing because I don't not have a community or at least one other person I know who's going through what I'm going through right now and every single month and especially if i have a separate medical emergency I keep thinking "Am I dying or am I just paranoid?"
Other than that, most things I see online for my condition is the more minor version or at least that's what I'm going to assume because they keep saying that recovery is done after a few months when I haven't fully recovered after 3 years though at least the Wikipedia page says that there were people who had my condition that had visual impairment or even blindness because that means my situation isn't some unknown freak case that is uniquely my own and that I don't have to worry that I have some new scary unrecorded symptom but doctors still don't know how to help me.
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Being someone who became severely disabled from a very rare (only about 2-6 cases per million people) and barely researched condition (people still don't know why it happens with most people only knowing about it from the lyrics of a will wood song) anything about my condition is so lonely and anxiety-inducing because I don't have a community or at least one other person I know who's going through what I'm going through right now and every single month and especially if i have a separate medical emergency I keep thinking "Am I dying or am I just paranoid?"
Other than that, most things I see online for my condition is the more minor version or at least that's what I'm going to assume because they keep saying that recovery is done after a few months when I haven't fully recovered after 3 years though at least the Wikipedia page says that there were people who had my condition that had visual impairment or even blindness because that means my situation isn't some unknown freak case that is uniquely my own and that I don't have to worry that I have some new scary unrecorded symptom but doctors still don't know how to help me.
#mayapost#vent#steven johnson syndrome#it's not even a tumblr tag wow#chronic illness#im like really lucky i survived but man it sucks#especially since i got this condition from antibiotics#it's hard to talk about this with anyone and i don't really know anyone who gets it#ive heard three people having it and one was only one patient that my doctor treated but never really knew what happened to#the second was a previous patient of the hospital that stopped treatment bc they could no longer afford it#and the last is like my sister's previous therapist's kid#my sister talked about it with a person who worked at a salon and she thought it was a fake disease made up for facebook#it's so lonely being this way#sjs#lyell's syndrome#toxic epidermal necrosis#allergies#allergic reaction
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The Mountain Echo, Shickshinny, Pennsylvania, June 16, 1944.
Via Yesterday's Print
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Arugula is some crap they found on the ground for real
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John Green may be a little "cringe" but credit where credit is due at least he's a YA author who made his special interest trying to expand tuberculosis care instead of trying to make a living hell for trans women and other LGBTQ+s
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