#lupus

[thelupuslady]

Needed my own reminder for my stubborn ass.

#autoimmune #lupus #lupus warrior #spoonie #fibromyalgia #lupus advocate #lupus fighter #strong #chronically ill #pots syndrome

[hussyknee]

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.

#block JavaScript in site settings if article is paywalled #April burrel #disability #schizophrenia #lupus #mental illness #catatonia #chronic illness #institutionalization #psychiatry #medical science #healthcare #autoimmune disease #Washington post #knee of huss

[tiifu-ndovu]

#Ouwehands #Dierenpark #ouwehandsdierenpark #Photography #Photo #Zoophotography #zoo #animal #animals #animalphotography #Wolf #canis #lupus #Wolves #canine #canines

[gayaest]

Chibis of my original characters! 🌈🩷

#id in alt text #my art #art #disabled artist #disabled art #wheelchair user #white cane #original characters #ocs #disabled ocs #lupus #SLE #vitiligo #alopecia areata #Spina Bifida #Spina Bifida Myloneningocele #Visually impaired #Ehlers Danlos Syndrome #quadriplegia #illustration #sketch #chibis

[swollenbabyfat]

I don't want to wear my skin

#comic #comics #storytelling #furry #chronic illness #chronic pain #fursona #lapine #lupus

[feech-phylicia]

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.

#feech rambles #chronic illness #chronic pain #spoonie #lupus

[dushpshpsh]

This reference is almost a year old, but I still like it, as well as the character herself Glare-on-the-Water, lupus ragabash Shadowlord

#wod #world of darkness #oc #werewolf the apocalypse #wta #ragabash #shadow lord #shadowlord #lupus #reference #garou #homid #glabro #crinos #hispo

[uzlolzu]

My ahroun and a full moon.

#uzloart #Jasper #Jasper Jones #garou #Werewolf the apocalypse #W:tA #Dies #vampiri #glass walker #lupus #ahroun #giant mega moon attack

[spoonful116]

Getting diagnosed with a chronic condition is easy! Just follow these steps:

Have symptoms

Schedule doctor visit

Wait indefinitely

Repeat

#spoonie #disability #chronic disability #disabilities #spoonie life #ibs #lupus #ibd #gastroparesis #chronic uti

[puffyrice]

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.

#nursing student #nursing studyblr #study aesthetic #study blog #study motivation #studyspo #studying #studyblr #nursing school #study space #student #study inspiration #desk aesthetic #desksetup #deskspo #study desk #desk space #lupus #chronically ill

[thelupuslady]

#autoimmune #lupus #lupus warrior #spoonie #fibromyalgia #lupus advocate #lupus fighter #strong #chronically ill #pots syndrome #posturaltachycardiasyndrome #postural orthostatic tachycardia syndrome #ehlers danlos awareness #ehlers danlos life #systemic lupus erythematosus

[sparkles-and-trash]

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 ❤️‍🩹

#chronic illness #chronic illness awareness #chronic illness psa #chronic illness support #disabilties #disability #lupus #lupusawareness #living with lupus #endometriosis #pcos #cfs #scoliosis #chronic migraine #chronic mental illness #mentalheathawareness #irl tag #personal

[gayaest]

Some sketches of Gali, Rawiya, and Yaretzi. 🩷🌈🎧

#ID in alt text #my art #art #original character #ocs #disabled artist #disabled art #sketch #wheelchair user #spina bifida #lupus #sle #white cane #visually impaired #disabled #babe with a mobility aid #disabled and cute

[swollenbabyfat]

Flare

#unicorn #chronic illness #lupus #furry #illustration #dia

[echo-bleu]

Psst what if Caranthir’s “red face” is from a lupus butterfly rash?

HELL YES anon I see your vision

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.

#caranthir #carnistir #morifinwe #silmarillion #silm #the silmarillion #tolkien #silm art #tolkien fanart #echo's drawings #disabled tolkien characters #disabled characters #lupus #somehow he ended looking more like my fëanor than curufin #which is not ideal #but hey #i like him #feanorians

[patronsaintoffinalgirls]

PLEASE HELP TRANS, DISABLED COUPLE IN TRANSPHOBIC STATE STAY HOUSED !!!

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

#trans #nonbinary #t4t #cripplepunk #transgender #wlw #disability justice #cripple punk #disability #genderfluid #genderqueer #nblw #nblnb #transmasc #transmasc wlw #dissociative identity disorder #lupus #plural system