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#lupus
thelupuslady · 11 months
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Needed my own reminder for my stubborn ass.
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hussyknee · 10 months
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The young woman was catatonic, stuck at the nurses’ station — unmoving, unblinking and unknowing of where or who she was. Her name was April Burrell. Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself. April was diagnosed with a severe form of schizophrenia, an often devastating mental illness that affects approximately 1 percent of the global population and can drastically impair how patients behave and perceive reality. “She was the first person I ever saw as a patient,” said Sander Markx, director of precision psychiatry at Columbia University, who was still a medical student in 2000 when he first encountered April. “She is, to this day, the sickest patient I’ve ever seen.” It would be nearly two decades before their paths crossed again. But in 2018, another chance encounter led to several medical discoveries reminiscent of a scene from “Awakenings,” the famous book and movie inspired by the awakening of catatonic patients treated by the late neurologist and writer Oliver Sacks. Markx and his colleagues discovered that although April’s illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain. After months of targeted treatments — and more than two decades trapped in her mind — April woke up. The awakening of April — and the successful treatment of other peoplewith similar conditions — now stand to transform care for some of psychiatry’s sickest patients, many of whom are languishing in mental institutions. Researchers working with the New York state mental health-care system have identified about 200 patients with autoimmune diseases, some institutionalized for years, who may be helped by the discovery. And scientists around the world, including Germany and Britain, are conducting similar research, finding that underlying autoimmune and inflammatory processes may be more common in patients with a variety of psychiatric syndromes than previously believed. Although the current research probably will help only a small subset of patients,the impact of the work is already beginning to reshape the practice of psychiatry and the way many cases of mental illness are diagnosed and treated. “These are the forgotten souls,” said Markx. “We’re not just improving the lives of these people, but we’re bringing them back from a place that I didn’t think they could come back from.”
– A catatonic woman awakened after 20 years. Her story may change psychiatry.
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gayaest · 8 months
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Chibis of my original characters! 🌈🩷
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feech-phylicia · 5 months
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It will never cease to amaze me how differently people with chronic pain perceive pain compared to people without.
Like if my mom or I reaches the point that we're crying from pain we should probably already be in the ER.
Genuinely, that's what tipped us off that we needed to go to the hospital when my mom had appendicitis.when she started crying we knew something was up and it was serious because my mom never cries from physical pain. She cries about other stuff but NEVER from pain because she's so used to it.
Anyway she had her appendix removed and when she got home my dad told us a story about what happened the next day. Apparently when she woke up after the surgery the nurse asked her what her pain level was on a scale of 10. My mom answered, "pretty good I'm only at a 2!" To which the nurse replied, "Oh honey, we want you at a 0!" And started giving her more pain medication. At this point my mom paused and said, "I didn't know 0 was an option"
We all laughed at the goofiness of it and pointedly ignored how legitimately tragic it was. I remember thinking at some point that I didn't know 0 was an option either.
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spoonful116 · 8 months
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Getting diagnosed with a chronic condition is easy! Just follow these steps:
Have symptoms
Schedule doctor visit
Wait indefinitely
Repeat
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uzlolzu · 5 months
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My ahroun and a full moon.
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puffyrice · 4 months
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100 Days of Productivity [11/100]
11.25.23 | I have my BLS CPR course tomorrow at 11:30, so I spent the afternoon completing the online portion. I also managed to take notes and make a Quizlet set for my nursing quiz on Wednesday. As long as I'm not too sick tomorrow, my goal is to finish my final research paper on women in politics, so that I can put all my focus on my two final presentations.
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chronic-lee-lizard · 2 months
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School sucks with health issues
Sorry I have to go to the ER, then the hospital three hours away, then to intense physical therapy on the day I was supposed to do a worksheet! I’m so irresponsible.
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the-unforgivenn · 5 months
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CW: Bullying, descriptions of various autoimmune diseases, Carol Perkins is a huge B, Jason Carver is not (!)
Word Count: 6.4K
Summary: A one-shot highlighting the everyday struggles of chronic illness and how a metalhead’s goofy kindness can instill a bit of well-deserved confidence.
Tags: Eddie Munson x chronic illness!fem reader, Eddie Munson fluff, hurt/comfort
A/N: This story came from the wonderful, beautiful brain of @duncanhillscoffeecups , as an ask about 6 months ago. She’s someone I’m fortunate enough to call a friend. She’s a warrior, a superhero in everyday clothes; battling what we can’t see but she constantly feels. I’m constantly in awe of her mental and physical fortitude. This one is for you and all others who suffer in silence.
We see you. ❤️‍🔥
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There’s a lot to love about winter in rural Indiana, especially on a day like today.  The puffy, steel-colored clouds that paint the sky hold in a little extra heat so when the snow falls, it falls in layers upon layers on the dormant ground.  The barren trees shield the wind, what little there is today.  The sun’s rays are present but filtered, so there’s no irritatingly dangerous glare off the iridescent surface; instead of glimmering bright enough to burn your retinas, the purity of the landscape is more matte and inviting. 
For seemingly everyone in the greater Hawkins area, this is a beautiful day – one full of the promise of tightly packed snowballs and whirling tracks behind bundled-up youth (or that lucky parent) that pile their ever-growing base for the world’s greatest snowman.
For you?  It’s fucking torture.
But, then again, not everyone has dramatic little blood vessels in their fingers and toes that cower to the the slightest inconvenience, clamping down like a vise and cutting off precious, life-giving warmth to the tips of your digits, causing them to discolor in tepid hues of stark white and indigo blue until your body feels you've had enough; only to have blood flow sluggishly return in burning, prickling, painful shades of dusky red.
How very patriotic of you.  
A diagnosis with a name like Raynaud’s Phenomenon should make you feel about half as badass as it sounds.  It sounds like a goddamn superhero callsign – like you should don a cape instead of mittens if it gets too cold indoors, or be able to run faster and jump higher instead of being bogged down by fatigue and dizziness if you so much as get up too fast (a lovely gift from the medication that doesn’t really do all that much to settle the phenomenon down, anyway).  
Nah.  All Raynaud’s does for you is pair nicely with your other chronic illnesses; your sweet little friend alopecia, who likes to just randomly remove circular chunks of hair from your noggin out of spite; and lupus, who thankfully can lay dormant like the Indiana winter landscape for periods of time long enough to make you almost forget about her.
Until she rears her bitchy little head and makes you feel like you’ve been hit by a motherfucking Mack truck.
Luckily, the lupus beast is at bay, thanks to your meticulous dosing of your lengthy medication regimen.  Alopecia, unfortunately, didn’t get the memo; and that’s why you stand at the sink in the girls’ locker room, biding your time for an emptier space before you dress and ready yourself for gym class.
Specifically, pulling your hair in a ponytail after the judgemental eyes of one Carol Perkins exits the room.  She’s absolutely the last person you want to notice the two growing bald patches behind your right ear, because no matter how hard you try, they become quite obvious – even for the most proficient of ponytail engineers.
Your reflection huffs as you do, displacing some of the feathered strands away from your cheek as you consider running your hands under warm water while you wait.  The echoing commotion off of the concrete walls behind you is at a peak, loud and obnoxious and wildly irritating.  You know, however – you know what this means.  It’s likely you have several moments, if not minutes, to quickly change alone in the tiny little area off from the bathroom stalls, away from wandering and wondering stares and crisp, foul words full of ignorance and acid.
Years of the same, stupid shit should build you a better armor by now.  But it doesn’t.  It hasn’t, not yet.
So, you change alone.
The ache in your bones, the creak in your joints are a hard-stop for speed; the lack of dexterity in your digits a roadblock for efficiency, but you manage to shuck your fleece-lined tights and sweater for the ratty, school-issued uniforms for phys ed.  You’re coming down the home stretch, pulling on socks you can’t quite pinch just right; your tongue pokes out of the side of your mouth as you force those little muscles to do their fucking job and yank that fabric over the soft curve of your heel.  You slide your slip-on Keds back over your feet, then straightening your spine with a muted groan.  Shuffling back to the mirror, you have one step to complete and you’ll actually be out in the gym before the rest of them – a smile ghosts over your features.  What a weird thing to be proud of, but here you are.  Pretty fuckin’ proud.
You pick at the small elastic wrapped around your wrist, missing the catch under an unathletic index finger three separate times before finally hooking it and pulling it over your hand.  In a flurry of silken strands and uncoordinated digits, you gather as much of your hair as you can in both hands while eyeing your handiwork for the offending, reddened areas of peach fuzz.
You yelp as the door to the showers bursts open, and of course – of course – the holier-than-thou sneer of Carol Perkins is what you see first right as your fingers rake over the thin, remaining patch of hair to provide coverage to what’s bare.
Carol sees it all.
Her face wrinkles in overdramatic disgust.  “Eww, gross!  What in the fuck is that?!”
Carol’s screeching theatrics draw the attention of the two girls that flank her sides (Tina?  Trina?  Dawn?  Dunno), who reactively parrot Carol’s repulsion — though you’re certain they have no fucking idea what for.
“Ohmygawd,” Carol squawks as she draws closer to where your arms are held frozen atop your head, “are you going bald?!”
That gets TinaTrinaDawn’s attention, the two marionettes stalk forward with a sickly curiosity borne only of ignorance and hate.  “Are you fucking kidding me, she’s seriously going bald?” 
You’re caught between the overwhelming urge to drop your progress and just leave your hair down before stammering some lame-ass retort about how no, you’re not going fucking bald, or to quickly whip your thinning tresses through the tight elastic as to not lose all you’ve gained just for the sake of three stupid hoe-bags that wouldn’t be able to recognize a chronic illness if it smacked them upside the head.
“That’s so pathetic, did you see how big that bald spot was?”
The trouble with words is that they fucking hurt, even (especially…?) when they’re spoken from the mouths of hoe-bags.
Carol scoffs as your hands fall to your sides, your hair curtains your reddening face like a thin, lace veil.  “Holy shit, do you have lice or something?”
Your eyes grow wide, and your stammering no, no! is drowned out by the henchwomen’s comically thespian wailing.
“Oh my god, gross!”
“That’s so fucking nasty, seriously!”
You finally find your voice through the hammering of your heart, breaking through their boisterous stupidity to offer some logic.  
“It’s not lice,” you mumble, willing yourself to speak up, “it’s not.  I’d be itching if it was and I’m not.”
Carol winds her arms over her chest and smirks.  “That’s exactly what someone would say if they didn’t want people to think they were fucking dirty and gross, all infested with lice.”  Her eyes narrow into a malicious stare.  “You’re gonna spread whatever nastiness you have to everyone here, bitch.”
Your jaw aches with how hard you have to grit your teeth to keep the tears at bay.  “It’s not lice. It’s nothing, okay?  It’s nothing that can spread.”
“Oh yeah?” her friend scoffs.  “Then what is it?”
A familiar tether of annoyance tugs at your heart.  It’s not worth it to explain it to these people; they wouldn’t understand and you know it.  You know this, but yet you hope for some decency left in their stupid little black hearts, and if there is — maybe they’ll hear you.
“It – it’s called alopecia,” you mutter, unable to meet the piercing stare of three sets of eyes.  You feel like a bird in a cage, surrounded by hungry Siamese cats, feral for your fear.
“Al-oh-what?”
“Alopecia,” you repeat, though it comes out more as a demure question, like you don’t want to insult them for being so ignorant and rude.  “It – I, uh, lose – um, I lose h-hair –”
Carol leans into your space, and you reactively flinch.  “D-d-d-does it make you fucking stutter like a moron?”
The vile cackling of the witches is abruptly cut by a soft, but firm, “Carol.  Stop.”
Carol’s jaw goes slack as a familiar strawberry blonde ponytail strides up to face her.  “C’mon,” Chrissy Cunningham commands kindly, but the fire that flickers in her blue eyes doesn’t waver.  “Just stop.”
“You’re seriously getting in my face about –”
Chrissy cuts her off before she gets carried away.  “Being a bitch for no reason?”
Carol practically growls with how hard she scoffs.  “Did you not see that she has lice?”
“Carol, seriously?” Chrissy sighs with a dramatic roll of vivid pools of baby blue.  “Not at all what that is.”
The girl that’s been challenged by your literal guardian angel in a scrunchie and a heather gray tee opens her mouth to retort, and then closes it, turning her vapid attention to you.  “You know if you forget to wash your hair, it falls out.  That’s disgusting.  Fucking wash your hair.”
“Carol!”
“What, Chrissy?” Carol spits, “what the fuck do you have to say?”
“You’re flat-out being a bitch.”  Chrissy looks pointedly at you, and confirming that you’re dressed enough to be presentable for class, she lopes her toned arm through yours.  “Let’s go, we’re gonna be late.”
Chrissy guides you wordlessly through the door, leaving a flabbergasted Carol in her wake.  She arches a pretty brow over a glance behind her, and confirming that the door closes, she leans in to say,
“Her parents are getting divorced.  Not that it’s any excuse as to why she’s being such an asshole to you, but she’s been like this for weeks.”  Her arm falls from yours as you turn though the double doors of the gym.  “I have a cousin with alopecia,” she explains softly, her lips twist into a sympathetic frown.  “It sucks.”
“Yeah,” you chuff through the burn of tears that well dangerously along your lower lids, “it does.”
Chrissy pats your arm.  “Try not to let her get to you,” she murmurs sweetly, flouncing away to go talk with a group of girls that have gathered around the badminton nets.
Ugh.  Badminton.  Could Coach Brown have picked a worse activity to introduce this week?  Who in the fuck plays badminton, anyway?
Apparently, high schoolers in rural Indiana do.  The rules are simple: partner up, grab a small racquet and whack the little plastic birdie at the two people on the other side of the net.  Seems pretty easy, except it’s winter and there’s no chance for any successful grabbing of anything with the way your hands burn and tingle; the way your fingers flush a deep, chilly purple despite your fevered attempts to warm those assholish little blood vessels with every known massage technique in the book. 
Gritting your teeth against the pain, a rather overzealous swing at the birdie has you losing your hold on your racquet, and as you connect with nothing but frigid gymnasium air, it flies spectacularly out of your hands and makes a point to clatter with gusto on the lacquered wood floor.
You sigh in frustration, weary vertebrae creaking and groaning in protest as you lean over to snatch it from the ground.  But before you can make such a move, your assigned badminton partner is there to whisk it from the floor and back safely in your hands.
“Your racquet’s making quite the racket,” Eddie Munson chuffs, his toothy grin dancing across freckled cheeks as those bottomless doe-eyes watch you carefully.  
You grimace as your fingers flex around the gummy handle, the rubber well-worn from many years of piss-poor play.  He clears his throat, an obvious ask for your attention.
“Get it?”
You wince, rolling some tension out of your shoulders while your fingers protest your stubborn attempt at gross motor skills.  “Get what?”
“Y’know,” Eddie licks his lower lip nervously, twirling his handle in a magnificent whirl in his hand, “racket…?”
“Oh, right.”  You have no idea what he’s talking about.  “I got it.  Get it.”  You clear your throat, bobbing your head awkwardly at the odd exchange.  “Good one, Munson.”
His plush lips press together, eyes narrowing to thin slips of honey-brown as he regards you.  “Hmm.  You ready?”
“Yep,” you feign enthusiasm as a welcome distraction from the throbbing in your frigid digits, “you serve.”
He nods once, hollering something about servicing Chrissy and Patrick on the other side of the net, to which Patrick guffaws and Chrissy claps a hand over her perfect cupid’s bow in mock scandalization.  The lighthearted laughter tinkles around you, and you force a smile while inwardly wishing you could for once be part of the conversation instead of being so goddamn distracted with how your body protests every bit of this stupid game you’re forced to play.
Patrick calls out your name and tosses you the white little plastic game piece under the net with a grin.  “Your turn.  Keep that shit away from your partner.”
“Uhm, s-sure,” you stammer, body jolting in surprise as that birdie bounces off your useless hands and falls right on its rubber nose at your feet.  The tiny muscles in your fingers find it appropriate to spasm at this very moment, making your racquet tumble to the ground, yet again.
You can see Eddie inching closer in your periphery; the time to push through the soreness is now, just bend at the waist and reach forward and –
“Hey,” his voice is as warm as his palm that splays over your back.  “Stop, hey – I got it.”  He leans his lanky body toward the ground with such enviable ease it leaves a sour taste in your mouth.  Eddie leaves his stare locked on yours and doesn’t make a move for the equipment on the floor.   “Are you okay?”
“Y-yeah, I think –”  There’s something in his gaze, something deep and piercing and honest that makes you blurt the truth instead of skirting around it like you usually do.  With a shake of your head, you mumble, “No.  My hands are cramping like fucking crazy.  It’s –”
You don’t get to finish your sentence – Eddie’s already whipped away and ambling his lanky limbs over to Coach Brown, who waves off the metalhead’s fervent speech with an unbothered grunt.
He’s a little breathless when he comes jogging back.  “I’m gonna take you to the nurse’s office.  Come with me.”  He bends and scoops up your racquet and birdie, tossing it to Chrissy as she pads to the net.  “You got this, Cunningham?”
Her brows are set with concern over her seaglass eyes.  “What’s goin’ on?”
You revel in the warmth of Eddie’s arm as it drapes over your shoulders.  “Just taking my partner here to the on a walk. Out of the gym.  No big deal,” he shrugs a shoulder, looking down over his broad nose at you with a grin.  “Right?”
Chrissy shrugs as she dips under the net. “Feel better,” she whispers before summoning Patrick back to the game.
You look up at Eddie with grateful eyes. Somehow, he’s made the whole situation less embarrassing.  
He guides you away from the game, and as soon as you cross the threshold into the hall, you could sigh in relief – it’s at least ten degrees warmer out of that icebox of the gym.  The microscopic cables of tension loosen their hold in the tender musculature from your neck to your shoulders, and after a few steps, you can feel them settle to a more normal posture. 
It’s a small kindness, but you’re grateful for it anyway.
The only sounds are the squeaking of rubber soles on over-polished tile; you’re glad for the comfortable silence as the warmth seeps into your tissues.  Sneaking a glance at Eddie, you notice he’s staring straight ahead, lips rolled in and curls swaying as his head does, lost in his own little world.  
You follow him around the corner into the main hall when he chuffs, like he’s amused himself with his own private joke.  Before you have a chance to open your mouth to ask him to share, he starts humming.
It’s familiar, the tune that escapes through plush, pressed lips.  Eddie appears positively giddy, shuffling to his own personal rhythm he hums behind his smirk, sneaking very obvious looks at you out of the corner of his eye that are just as much endearing as he is.  
The attention isn’t unwanted, but it isn’t something you’re accustomed to.  You can feel your cheeks start to heat the louder he projects his sandpapery tone from the back of his throat, and after a few more steps, you recognize the cadence of the notes to start humming along.
Getting lost in the familiar tune settles your mounting shyness, just a little.  It’s right there… on the tip of your tongue.  Your features scrunch in concentration, trying to sift through the mountains of archived lyrics in the depths of your brain.  All the while, Eddie watches you with rapt attention, his bobbing shoulders tug his frame along for the ride; he’s practically dancing as he walks you through the empty corridor, intent on humming this hook until you arrive in recognition that’s just out of your reach.
The words here are missing, but you think it ends with arctic zone?
God damn it, it’s right fucking there – your brain fills in the missing words with little hmms and laas that correspond with the cadence of Eddie’s voice, and as he rounds his humming into the next stanza, it hits you.
She’s so cold, she’s so –
“Cold, cold, cold,” you practically yell, spinning to face the metalhead, “when I touch her, my hand just froze!”
Twin, hearty guffaws ring through the hallway as you finally land on the lyrics, and Eddie does his best Mick Jagger impression, jerking his shoulders and arms in time with the tempo of the song as he sings outright,
“She’s so cold, she’s so goddamn cold
She’s so cold, cold, cold
She’s so cold!”
His voice booms in spectacular fashion, bouncing off the lockers and wrapping you up in the heat of the moment.  Normally, something like these over-the-top theatrics would leave you mortified, but not today. 
“Eddie –” your hand flies to your mouth to hide your side-splitting laughter, which only serves to rile him up more.
It’s completely out of order, but not a part of the goofy metalhead cares.  He wiggles his brows, encouraging you to join him in the next line, “She’s so cold, she’s so cold, cold –”
And so you do.
“C-c-c-c-cold!”
Eddie cackles, curls bouncing in delight around his face that’s split wide with glee.  He takes it on himself to sing the next line with no hesitation,
“But she’s beautiful –”
Eddie’s dark chocolate eyes round when he cuts himself off, an embarrassed flush creeps up his neck when he realizes the content of the lyrics.  You watch as he presses his mouth in a thin line, like he’s willing the courage back in his throat as he clears it free of his mortification from his inadvertent overshare.  
He opens his mouth to say something, anything, when he spots a familiar door right before the turn for the hall in front of the cafeteria.  
“Hang on,” he mutters with a look over his shoulder.  Confirming the coast is clear, he tugs at your hand.  “In here.”
Eddie’s fingers gently slide through your fingers, making you inadvertently twitch from the contact.  Pulling you through the door, he leads you into a darkened space.
“The drama room,” he supplies softly, latching the door behind him with a gentle click.  “It’s warm enough in here that I don’t have to wear my jacket.”
Your eyebrows raise on your forehead.  He’s right – the room, if you recall correctly, is just off the kitchen.  Of course it’d be warm in here.  
“Oh,” you murmur, “yeah, it is.  ‘S nice.”
Eddie wanders through the space with purpose, arriving at a long table in the back of the room.  “Here,” he says as he pulls out a chair, “wanna sit for a minute and warm up?”
A languid smile pulls at your cheeks.  “Yeah, thanks.”  
Settling into the chair next to you, he keeps his fingers laced with yours, covering them with his other hand and rubbing gently to inject some heat into your freezing skin.
“Wow,” his brow furrows,  “you are cold.”  The browns in his eyes darken with concern.  “Do you need to go to the nurse?”
You can feel the stinging tingle of the return of blood to the tips of your fingers already.  “Nah,” you grin, “I’m fine.”  You nod towards his large hands that smother yours.  “This helps.”  
“How much does this happen?”
You shrug nonchalantly.  “Pretty much every day.  All day in the winter.”  
Eddie blinks, eyebrows elevating high on his forehead.  Giving your hands a gentle squeeze, his mouth twitches as he asks, “Are you sure you’re not like, a witch or a warlock and this is your body’s way of releasing your pent-up magic?  And if I’m not careful, lightning is gonna shoot out your fingers and you’re gonna turn me into a newt?”
A burst of genuine laughter is shocked out of you, cinching your sides.  “A what?!”
His boyish grin widens.  “A newt!”
“No,” you wheeze as your giggles settle, “no magical magical powers for turning people into newts or any other animals, I’m afraid.”  
For a moment, you consider telling him.  Confiding in him the name of the stupid disease that makes you feel like less of a human, sometimes.  Because the way he’s looking at you?  The way he’s treated you over the last half an hour has made you feel whole.  Like a normal person, for once.
He scoots closer, pressing his palms closer together over yours, cocooning your hands in a ball of heavenly heat.  “That’s really too bad.  I kinda have a list I’d totally share and just, y’know, let you go to town.”
Your lips press together in a smirk, playing up to his antics.  “Then we’d have a newt problem in Hawkins.”
Eddie pitches forward and laughs, such a lighthearted sound.  “I guess we would, sweetheart.”
The way he murmurs sweetheart has warmth radiating through your entire form, heating your cheeks that are pinched still from your goofy, smitten little grin. 
“I, uh…” you begin shyly, “wish it was something cool like a superpower.”  You worry your bottom lip between your teeth, well aware of Eddie’s eyes still on you as you search for your words.  
His gaze is soft, a comfort rather than expectant.  There’s no urgency behind it, even when your mouth opens and closes again around words that just won’t come.
He waits with otherworldly patience, hands still clasped in a ball of heat over yours. 
And then, the words appear as you meet his espresso irises with conviction.  “I have something called Raynaud’s,” you explain meekly, gaze flicking to where your fingers wind with his, “it’s this autoimmune thing that makes my blood vessels clamp down and I – I guess I’m just cold all the time.  Especially with my hands.”
“Does it hurt?”
There’s real empathy woven through his tone, something you’re not always accustomed to when speaking of such things.  It blooms a different kind of warmth, something thicker and stronger that settles light in your heart.
“Yeah,” you huff a watery sigh, “it does.”
“Shit,” Eddie rasps with a frown.  “Sorry – I, uh… not a real eloquent sentiment,” he grimaces, though it makes you smile.  “Sorry.”
“No, don’t be.  Really.  Just you asking is nice.  Talking about it with someone who isn’t all judgmental is nice.”
“Oh, I’m being judgmental,” Eddie grumbles with a shake of his curls, “insanely judgmental of me and my horrific song choice – I am a huge, raving idiot and I hope you know I meant you no harm.” 
“Eddie…”  You push out your bottom lip in a sympathetic pout. “You had no idea.  Really, it’s okay.  It was sweet, actually.”
“Yeah?”
You give him a reassuring squeeze of thoroughly thawing hands. “Yeah.”
The conversation is easy after that, making the rest of the hour melt away as warmth settles back into your fingers.  Though Eddie certainly puts you more at ease (even after his hands leave yours, as apparently the man can’t go three minutes without utilizing them in every which way to tell a story), lingering insecurities from the locker room still swirl in your mind, and have you on multiple occasions checking to make sure your hair covers those pesky patches over you right ear.
Eddie, of course, notices your nervous fidgeting.  “You ok?” he asks, cocking his head to the side after your digits dumbly fumble over a clump of strands that lie limp on your shoulder.
“Yeah – uh, yeah.  ‘M fine.”
Eddie shifts in his chair.  “Um, kind of a dumb question, but does it make your head hurt, too?  You keep –”
“Oh, no,” you interject sweetly, “it doesn’t.  I – I just have…” 
You find yourself trailing off before you confess yet another secret with a rapt, reverent look at his thick, curly hair.  Jealousy simmers below your skin as you blurt, “Damn.  You have really nice hair.”
He seems a little taken aback by your compliment, but recovers with a disbelieving, “Oh.  Hah, thanks.”  He twirls a curly lock around his deft fingers.  “So do you.”
“No I don’t.  It’s thin and it… it falls out sometimes.”  You don’t mean to grouse, but it’s the truth, and frankly?  It fucking sucks.  
“It does?”
“Yeah.”  
Eddie heaves an elongated sigh, like he’s contemplating something.  His tone is a little less hesitant, but still careful as he observes, “From what I gather from that frown, sweetheart… it’s more than just what I leave behind in the shower on a daily basis.  My uncle, uh – he jokes that I could make another human with all the hair I shed.”
His candor pulls your gaze from the ground.  “You’d be right, it is a little more than that.”  Summoning what bravery you have in you, the hand held near your right ear swipes the curtain of hair away to show him the two offending patches of hairless scalp.
You wait for the reaction, the repulsion, the disgust; but it never comes.  Eddie instead looks upon those two little patches with intrigue.  Respect.  
Kindness.
It makes you swallow hard.  “Carol Perkins saw it and gave me hell in the bathroom.  Said I had lice.”
There’s a lengthy pause.  A lull in the moment where Eddie’s eyes round comically wide before he bursts into side-splitting, wildly infectious laughter. 
“Lice?!” he shrieks, bending at the waist and slapping a ringed hand against the table, “lice doesn’t make you go bald!”  
You can’t help it, the way he’s absolutely losing it makes you beam, sponsoring a giggle or two of your own.  “I know, that’s what I tried to tell her!”
“Jesus Christ!”  Eddie’s wheezing is punctuated by gasping ohhhs as he fights to regain his composure.  “She’s such a fucking dumbass!”  
Once he’s settled himself, he eyes you coyly. “You don’t have to if you don’t want to, but I bet if I braid it, it’ll hide that spot.  Not that you should feel like you need to.”  Eddie tips his head to the side.  “It’s kinda metal.”
“Oh,” you admonish with furrowed brows, “no it’s not.”
“No, seriously!”  The worn rubber nubs on the bottom of his chair do nothing to mute the jangle and scrape of metal against tile as he scoots closer to where you sit.  He leans well into your space, and it surprises you that there’s no instinct to recoil.  “Imagine if that whole side of your head was shaved like that and then you couldn’t even tell!  Holy shit, that would look so fucking metal.”
Your whole face lights up.  “Like Cyndi Lauper?”
Eddie leans back and pulls a face.  “Well, I could argue that you’ve made it decidedly less metal now, but yeah.”  He flashes you a toothy grin, chair creaking as he leans back and crosses his arms over his chest. “Like Cyndi Lauper.”
Funny how you can’t help but smile in front of Eddie Munson.  “Yeah, you can braid it if you want.”
He looks positively thrilled.  “Good.”  He shuffles closer, maneuvering his seat to situate himself behind you.  “C’mere.  Let me at this luscious hair.”  His tone drops, and you can feel how his shoulders shake as he gently rakes his agile fingers through your strands.  “Lice, my fuckin’ pasty ass.  Goddamn Carol Perkins, what an moron.”
It’s an effort, but somehow you manage to keep your torso still as another torrential wave of laughter threatens to shudder through your form.
Eddie’s fingers are well-practiced.  He’s easily split your hair into two sections, and in what seems like no time at all, a snug set of French braids are wrapped masterfully over your head, perfectly hiding the imperfections that caused you so much strife.  
A reverent drag of your hand down one elegant plait has you gazing at your savior in awe.  “How do you know how to do this?” you breathe.  “It’s so good.”
The corner of Eddie’s mouth ticks up in the most charmingly impish way, popping a rogue dimple in his left cheek.  “Ah well,” he muses as he stands to lead you back to the gym, “I may have been told by a certain uncle that learning how to do it would make me look less like a heathen.”  He sneaks a glance at you before tossing you a wink.  “And it would make me popular with the ladies.”
“Oh,” your lips twist into a smirk, “how’s that workin’ out for you?”
Eddie dips his chin near the shell of you ear, and the shiver that crawls down your spine isn’t due to the cold, for once. “I dunno, sweetheart,” his breath fans warm over the sensitive skin of your neck. “You tell me.”
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Your arrival home is a little later than normal. Even though the stop at Bradley’s went smoothly, you’re still breezing through the front door about an hour later than usual.  There’s no hiding from your family, however – as soon as that front door slams, your mom pokes her head around the hall.  
“Hi.”
She’s got the biggest, corniest smile on her face.  It makes you really unnerved.  “Hi?”
The smile widens, like a goddamn Cheshire cat.  “Got anything you wanna tell me?”
Your brows furrow in a pinch over your nose.  “Uh…” Theres no way she knows about skipping out on the nurse, right?  “No, I don’t think so?”
“Ha!” your grandmother cackles from her perch in her easychair.  “Liar!”
You round on her, grocery bag swaying with the movement of your body.  “Oh, what now?” you call back.  “How am I a liar?”
There’s a light in your mother’s eyes that dances just as much as teases when she says, “I wouldn’t say a liar, my dear,” she chides, sacchrine-sweet, “just withholding vital information.  Wouldn’t you say, Gran?”
“Yep!” Gran hollers again, “I would!”
You’re smiling in earnest now yay the threat of trouble is gone. “What in the heck are you two up my ass about?!”
Your mom holds a piece of paper pinched between her fingers.  “Someone called for you.”
The grin that widened so over your lips drops from your face in an instant.  There’s no way – no way he’s already called.
It’s code, right?  It’s code that guys — after a girl give them their number — wait at least two or three days to call.  You expected that.  You convinced yourself of that after you told Eddie Munson that yes, his hair-braiding deal did work quite well with you (a lady, he was quick to remind), and you wasted no time darting into the locker room to grab a pen and piece of scrap paper from your bag to scribble your home number.
It has to be Joy from chemistry, instead.  Or maybe Jeff – he was in your accounting class and you guys had that project together earlier in the year.  From the way your elders are looking at you with such playful expectancy, you’ve deduced it has to have been a boy that called.
Your Gran confirms your thought with an adorably irritating lilt, “It was a booooooy!”
Rolling your eyes, you try to ignore how your heart flutters. Instead, it disobeys — stuttering out of rhythm as your mom hands you her neatly folded message.
No way was that boy Eddie Munson…
The paper crinkles, dry and scratchy against your fingers that threaten to flush cold again as the adrenaline surges through your system.  You choke on a soft scoff, grinning madly to yourself as you scan her note.
Eddie Munson called to check in, he says call him back if you want to.  
I THINK YOU WANT TO!
“Jesus mom,” you mutter, shoving the paper in the back pocket of your jeans, “meddle much?”
You mother merely shrugs as she ambles past you to the kitchen.  “I thought he sounded very nice.”
“And handsome!” Gran pipes from the den.  “Very deep voice, that one!”
The rush of heat to your chest and cheeks effectively stops the bite of Raynauds in its tracks.  “Grandma!” you scoff over a laugh, “stop!”
If you could, you’d take the stairs two at a time.  As Lupus would have it, you’re stuck with singles, but in no time you’re in the privacy of your own room; door shut, latch locked, and phone in lap, waiting to dial the number left below your mother’s annoying little underlined annotation.  The nerves have kicked up again, but you’re pleasantly surprised to find that the little pit of worry isn’t as bad as you’d expected.  In fact, you’re excited to return this call.
The phone picks up on the second ring.  “Heeello,” Eddie drawls, “Munson’s.”
He’s already got you smiling and he’s barely said two words.  Some of the shyness is gone as you mimic his greeting.  “Heeey there, Eddie.”
It’s like you can hear how his face visibly lights up.  “Oh!” he exclaims into the receiver, making you jerk the phone back away from your ear, “It’s Jagger!”
“Jagger?!”
“Yeah! Uh, cause… yknow, the song, I — um, nevermind.”  His awkward silence is filled with the powdery-soft sound of your giggles, of how your cheeks burn with the strain of holding this perma-grin you seem to have developed in his presence.  He takes a deep breath.  “Are you okay?”
Right – the reason why he called.  “I am, actually.  Thanks to you,” now-warmed fingers trace over the braid that’s still held secure along your scalp.  Clearing your throat, you sit up straight, mustering up confidence you already feel.  “Um, so I have a question.”
“Shoot, sweetheart.”
“I did some shopping after school.”  Your smile widens to the point where it crinkles the delicate skin around your shining eyes.  “D’ya happen to have a pair of electric clippers?”
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The very next day, Chrissy Cunningham scurries as fast as her Mary-Janes will allow over slick, overwaxed tile.  “Jas!” she calls to the blonde young man in the green and yellow letterman’s jacket, “hey babe!”
Jason Carver turns to greet his girl with a smile and a soft embrace.  “Hey, hon,” his adoration rumbles deep in his chest, “how was homeroom?”
Chrissy’s bright blue eyes are on fire; she’s got a look about her and oh – Jason knows that look.  “Okay,” Chrissy begins, her lids flaring and grin dropping to a conspiratorial smirk to convey the seriousness of the situation, “so you know how I told you I told off Carol yesterday for being such a bitch to –”
Jason nods and finishes her sentence by murmuring your name.  “Yeah, you did.”  He glances quickly over his shoulder, making sure Chase and Patrick are out of earshot.  Dropping his tone, he dips his lips by his girlfriend’s ear.  “Thanks for that, by the way.”
“Oh yeah, of course,” Chrissy murmurs back sweetly, taking the same consideration to keep her voice low.  “I told her it was my cousin, so she doesn’t know it’s, y’know, your sister that has alopecia.  Not that she’d care, but…”
“Still appreciate you keeping that between us,” Jason finishes as he wraps her in his jacket, a winter lunchtime ritual.  He leans in and kisses the top of her head, having to jerk his face away from the peppy swing of a strawberry-blonde ponytail as they make their way down the hall.
Chrissy nuzzles into his side before starting up again.  “Okay, so this morning – ohmigod, Jas, you’ll never believe – she comes in to homeroom today with her head like, half-buzzed like this –” the cheerleader gestures to the right side of her head from her eyebrows all the way to the nape of her slender neck, “dyed this gorgeous pinky-magenta color there, the other side is crimped and teased and dyed a yellow-orange.  Jas, like, holy shit, holy shit –”
“Holy shit,” he teases, “got it.” 
“Yes!” Chrissy squeals, “she looked so, so good!”  
“You gettin’ any ideas, babe?”
She wrinkles her dainty nose.  “Nah, I could never pull that off.”  Jason raises a brow at his girlfriend, as if to say, uh – yes you could, but she bats it away with an excited flit of her hand.  “Okay, so – she walks right by Carol who looks like a ogre with how her mouth hangs open, I swear to god she stops –” Chrissy pauses for effect, “looks Carol up and down, shakes her head so it bounces the fluff in her hair around and she goes,”
Chrissy’s timbre drops to mimic yours, “It’s a side effect of lice, Carol.  Or d-d-did you not fucking know that?” 
Jason guffaws, mildly impressed with your tenacity but all the more pleased when it brightens Chrissy’s face to see him so engaged and laughing at her story.
Chrissy’s feathery giggles trail off in the din of the surrounding students as they file into the cafeteria.  Her arm tightens around Jason’s middle.  “But the best part?”
“There’s more?!”  Jason’s sharp green eyes flare in comic disbelief, gazing down at his girl with mock slackjawed awe.
“Shut up!” Chrissy beams, delivering a swat to his chest with no real malice behind it.  Her grin is sly, playing up the mischief to the extreme.  “She was wearing Eddie’s leather jacket.”
The thick, sandy eyebrows on Jason’s forehead travel in a slow, northern path to pinch in faux-interest above his nose.  “Munson’s jacket, huh?”
Chrissy nods in rapid, giddy succession, practically bouncing on the balls of her feet.  “Isn’t that so super cute?”
Truth be told, Jason Carver couldn’t care less about The Freak and who’d actually be willing to wear his jacket around school, but to see his girl – the one in his jacket, light up so much when she tells her story about you?
Well.  He can’t help but agree.  “Sure, Chris,” he yanks her close and plants a kiss to the top of her head as he jests, “it’s so super cute.”
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sparkles-and-trash · 10 months
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Sometimes it feels like people kinda forget your pain when it’s chronic.
When someone healthy/able bodied gets sick or injured, people will pour out their support and understanding right away, which is good, obviously.
But after a while, people get tired of hearing about it.
They get tired of having to work around it, tired of having to be understanding.
But just because your empathy fades, doesn’t mean our pain and grief does.
I’m so, so tired of my pain. Of having to be understood. Of not having any chance to have a proper career, or dreams, or relationship.
I’m tired of my hands not working enough for me to write, draw and craft, which is what is normally keeping me going.
They just keep getting worse.
I’m tired of the pains related to my endometriosis and pcos making me unable to eat properly, get any exercise, and for making me bedridden more and more these days.
I’m tired of having to beg for support in what little buisniess I manage to make sure I survive during my rough recovery periods after surgeries and bad flare up’s.
I’m tired of knowing my life will not be a long one.
I’m tired of complaining, of being in pain, of grieving, of feeling like a burden.
There are no breaks for me.
That doesn’t mean I get used to it. I will never be used to it.
And I think I should be allowed to talk about all of this without feeling like a burden.
I probably won’t ever get to that point, but this is me trying to get there.
By being open and honest, and hoping that at least one person takes the time to read.
If you’re still here, still reading, thank you. It means the world.
Be kind to those around you who are like me.
We’re not happy about our situations, either, but having people willing to stick around and listen makes it a little easier to survive.
Thank you ❤️‍🩹
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swollenbabyfat · 9 months
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Flare
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thelupuslady · 1 year
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echo-bleu · 3 months
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Psst what if Caranthir’s “red face” is from a lupus butterfly rash?
HELL YES anon I see your vision
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Disabled Tolkien characters series
Assorted headcanons under the cut:
Elves, especially in the Years of the Trees where their conception of disability is... nearly non-existent (I have loads of headcanons about that and I'm writing a whole fic) don't really know about the immune system and autoimmune diseases.
Caranthir starts having symptoms very early in childhood, at first mostly anaemia and some joint pain, and skin issues. His butterfly rash is near-constant, though much worse during flares. Nobody flags this as a single issue, especially since he's also having other troubles (he's autistic, and he has pretty severe IBS-like symptoms).
Celegorm (starting to show symptoms of EDS, which they do know of because Míriel had it first) and Curufin (much more visibly/loudly autistic) are both a good deal more worrying to Fëanor and Nerdanel at that point, so Caranthir's issues tend to be, if not swept under the rug, at least not truly addressed. The parents are doing their best, but raising seven children is a lot, and Caranthir unfortunately gets all the Middle Child Syndrome.
(though in the Shibboleth, it's mentioned that Nerdanel named him Carnistir because he "had the ruddy complexion of his mother." Nerdanel with lupus, anyone?)
Once he's an adult, the symptom that bothers him the most is joint pain in his hands. His craft and his interests are in books, both writing them (he's a historian and economist) and bookbinding. He needs his hands.
Caranthir and Celegorm, because of their otherwise rocky relationship, swing wildly between curling up together for comfort and warmth during flares and shouting at each other because pain makes them both extremely bad-tempered.
The facial rash/lesions remains Caranthir's most visible symptom, and in a society where everyone is beautiful (especially his family), it's not an easy burden. Someone else made a wonderful post about this that I'll just link, rather than paraphrase.
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gayaest · 8 months
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Some sketches of Gali, Rawiya, and Yaretzi. 🩷🌈🎧
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PLEASE HELP TRANS, DISABLED COUPLE IN TRANSPHOBIC STATE STAY HOUSED !!!
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we had to leave our last job because im immunocompromised and our coworkers didnt mask which made me very ill for over a month... we don't know what to do. work from home jobs are more competitive than we expected, but at this point, in-person jobs are EXTREMELY difficult to find because we're trans and visibly GNC. we can't go outside without getting dirty looks and random people pushing past us in the grocery store, let alone find jobs that can accommodate our disabilities enough and still pay enough to survive. i can't do justice to the rising level of hostility towards trans people here. if we lose housing again, we will be in a VERY bad position because we literally have nowhere to go but the streets or maybe one of our respective rapists, which are both extremely dangerous situations made worse by the fact that we're trans and in the south with no support system... if anything bad happens, we're completely on our own out here.
we also still do not have enough to pay for our medications, so our physical and mental conditions are deteriorating.
we're just hoping to god we can get jobs, but even if we do, it's looking like we probably won't be able to earn enough to pay rent by the maximum possible due date which is the 15th of april.
we'll try to raise whatever we can ourselves, and i'll update this post if there are any new developments...
for now our goal is at least $1532
please spread this and donate if u can!!! i know so many people are struggling right now so i hate to ask, but please reblog even if u can't donate🥺💕
P*YPAL: .me/cryptidfriend105
C*SHAPP: $RaphaelSchmidt
V*NMO: crypticangels
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tiifu-ndovu · 1 year
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