#lupus and autoimmune disease

[lupus-esque]

Hi warriors & hydroxychloroqueenz 💜

I figured that I would post about when I first got diagnosed w/ SLE.

I know I had symptoms way before being diagnosed, but it all made sense after the official diagnosis.

I was diagnosed with SLE in December of 2017; I was 18 years old. In my first semester of college all the way in FL when home was in NYC. I was losing my hair A LOT & I was super sleepy all the time. Eventually the hair loss got so bad and depressing that I flew out to NYC to find out what the hell was wrong with me. After countless blood work, urine tests, and doctor visits, I was finally diagnosed with Systemic Lupus Erythematosus (SLE).

I was so confused bc I only heard about Selena Gomez having lupus, so I did my research instead of crumbling into sadness; KNOWLEDGE IS POWER. I cut all my hair due to the crazy thinning I had and embraced the new me as well as took back my control.

This was the beginning of my Lupus journey, thanks for reading 💗

[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.

[reportwire]

‘One Day, You Feel Fantastic, Next Day, You Can’t Move’

‘One Day, You Feel Fantastic, Next Day, You Can’t Move’

Sydney Evans had just returned from a hard-earned vacation in the Bahamas, a lazy, beachside break from her usual high-octane schedule: full-time work at a Washington, DC, nonprofit, a booming side business as a cake decorator, and leadership roles in her church. Then came the morning when she couldn’t budge. “I woke up and felt like there was a huge weight on my body,” says Evans, 36. “I…

[mothfinite]

a message for my fellow chronically ill/physically disabled selfshippers:

your f/os love you even if you have to go through a lot of procedures/doctors appointments/labs

your f/os love you even if your symptoms are considered 'gross' or 'weird'

your f/os love you even if you have a 'gross' condition or one thats made fun of

your f/os love you even if you use mobility/disability aids

your f/os love you even if your spoons are low and makes things like personal hygeine hard to manage

your f/os love you even if youre struggling with pain and dont have energy for anything more than existing

your f/os love you and will always be there to support you and take care of you if needed, they love you for all of you ♡

pr0ship/c0mship dni

[patronsaintoffinalgirls]

god i hate to do this when so many other people are in need too, but we need help SO badly right now.

i had to quit my last job because im immunocompromised and i became severely ill after my coworkers got me sick twice in one month. im looking for a new job but work from home jobs are extremely competitive and it's hard to find an in-person job that i can perform despite my disabilities.

my fiancee and i saved enough to barely cover this month's bills, but there was recently a massive power outage due to a storm in our state and all our groceries went bad before they got the power turned back on. we tried to save what we could because it's all we had, but it gave me food poisoning which im still recovering from and so now we're officially out of food. i also have had to go to the ER for an unrelated issue (my severe asthma) and can't afford the short-term medication they prescribed me there, or the asthma meds that will prevent me from having to go to the ER again.

so we really, really need money to cover food & medications for this month. $400 is our starting goal for now. please spread even if u can't donate 😭💕 and please don't feel like u have to donate if you're struggling with poverty as well

(please ignore the deadname on my p*ypal...)

p*ypal: paypal.me/cryptidfriend105

c*shapp: $RaphaelSchmidt

v*nmo: crypticangels

[spoonful116]

Autoimmune disease: because I'm the only one who can kick my ass

[liyazaki]

actually crying in the club (OK, fine- the break room) because I just got bloodwork back & y’all: after 3 long years, hundreds of pills & countless hours spent in doctor’s offices, I might finally be on the road to lupus remission.

[osddid-i-do-that]

Alright. I’m curious …

Choose your option and if you can, explain a bit in the notes what your understanding is/why you chose a certain option.

I’ll explain why I’m asking this once the poll is over. I don’t wanna affect results.

FULLY understand == someone explains to you what their symptoms are like, and you feel like you have a good understanding of why the person is behaving/doing/not doing/reacting the way they are. Basically: do you think you “get it”.

* Mentally ill folks without physical chronic illness: I am genuinely curious how your experience informs your worldview!

PLEASE REBLOG FOR LARGER SAMPLE SIZE!!!! ILY!!! 🤟💖

[chronicsickness]

I don’t think people understand the grieving you go through when you become chronically ill. The realization that you’ll never feel healthy again. That you’ll have this struggle and this pain for the rest of your life. That your body won’t ever be or feel the same that it used to. Sometimes I just sit and I cry and I grieve because I miss healthy me. I miss her so much.

[50stressballs]

It’s so weird having my physical health tank when my mental health is the best it’s ever been.

Like whenever someone asks me how I am I’m just like “well my bones hurt, and my muscles hurt, and I can work maybe 3 hours a day before I collapse from chronic fatigue. But like the world keeps on turning, so I’m vibing dude B) ”

[countfagula]

Happy Disabled Pride!! As someone with multiple disabilities it can be hard to be seen but I’m trying my best!!

[lupus-esque]

Hi there hunniez 🥰

Today I wanted to share part one of my prednisone journey since my diagnosis.

Tumblr did a weird thing when I added text box’s to my photos, so I hope you guys can read it well 😬 sorry….

Anyways, I’m a petite girl. I am 4’9” and at the time of my diagnosis I was probably 118 lbs. that was my normal. The heaviest prednisone made me was 127 lbs in 2019. Overall, mostly my face was what looked round. “Moon face” they call it 🙄, but I say “chipmunk cheeks” 🐿

Obviously the more steroids I’m on, the more water weight my face retains. That’s why I HATED when I would flare up again; and the flares were always dramatic 😐

The less steroids or none at all had me back to seeing a jawline, which always made me happy. I really don’t think I’m vein, but have always been small and fit, and seeing my face plump up was definitely an insecurity of MINE. We all have insecurities and loving myself through the prednisone process is something I always struggled with. Even as I type this on 24 mg of prednisone, I have to keep reminding myself that I am beautiful despite what this steroid’s side effects may cause. It’s super hard though at times, don’t get me wrong.

I’m looking forward to being tapered off of prednisone fully. Aside from the weight gain, it’s long term effects can be very damaging ☹️ (osteoporosis). So, hopefully the Lupus calms TF down so ya girl can have a jawline and strong bones 🤣🤣🥲

Love u hydroxychloroqueenz & enjoy those photos of my weight fluctuating faces from 2017-present 💜

[indyviree]

god, how i hate having lupus. everyone thinks im fucking helpless, and they underestimate me. and it fucking sucks because normally they're right. on certain days i physically can't participate in my hobbies bec i'm in horrible pain. because of it, people just think im lazy and disgusting. i can never win. i can't do anything right, i don't know why i thought i ever could.

[crimeronan]

I TESTED POSITIVE FOR LUPUS ANTIBODIES

[ricisidro]

#SARSCoV2 is a very weird virus 🦠

https://www.medscape.com/viewarticle/1000302

#COVID19 may lead to #AutoimmuneInflammatoryRheumaticDiseases (#AIRDs) like #RheumatoidArthritis, #lupus, and #vasculitis, study published in the Annals of Internal Medicine.

https://www.acpjournals.org/doi/10.7326/M23-1831

[wheelie-sick]

[ID: a series of tweets edited to say "Prednisone... save me...." and "Prednisone" and "save me Prednisone"]