#systemic lupus erythematosus

[disabilitypride]

Alt text: Five horizontal stripes, four of which are purple and the middle stripe is white. Purple is used as the awareness colour for lupus. At the middle of the flag is a stylized butterfly and its body is the shape of an awareness ribbon.

Lupus Flag

[ID: a flag with 5 stripes with a purple gradient getting lighter inwards towards the center white stripe. in the center of the flag is a white circle with a dark purple butterfly. the butterfly has a ribbon for a body. one of the spots on the butterfly's wings is shaped like a heart]

I couldn't find a lupus flag so I made my own 💜 anyone with any form of lupus is welcome to use it

it's purple with a butterfly because those are the awareness colors and symbols for lupus.

[thelupuslady]

[lupusbaby]

Ah yes,,, it’s time for my weekly mental breakdown about all the trauma that being chronically ill and disabled causes….

[gayaest]

Rawiya chibi 🪺🪷🍈🧸📚

[pained-princessluna]

Chronic illness be like: now our right knee is hurting

Me: ok. Is this a new accessory or should I get it checked out?

Chronic ilness: I don't know sis, sounds like a you problem tbh...

[spoonie-support]

To everyone who is homebound or bed bound this holiday season...

you are not forgotten. we all are invthis together.

[puffyrice]

I’ve been debating whether to talk about this stuff on here, but I need to just get it out somewhere.

I’m disabled. I talk every once in a while about it on here, but I got really sick a month into my first semester of nursing school. I have lupus, fibromyalgia, POTS, and Ehler’s Danlos Syndrome. When I got lupus it caused me to be so sick I could barely walk at all for about 4 months.

I got on all the meds and I do PT, but I am physically disabled. I have terrible fatigue and chronic pain. My pain isn’t really well managed yet, and I walk with a cane. It’s hard for me to be on my feet for more than an hour or so with my cane, depending on the day. Every day is unpredictable.

I’ve been forcing my way through nursing school by sheer stubbornness, even though it makes me seriously ill. I really actually love being in school. I love studying and learning and I’m even tutoring other nursing students this semester.

This semester is my first hospital clinical, which starts this Friday. The thing is, there is a not zero chance that my body literally can’t handle 9 hours of clinical.

Before I was sick I happily did 12+ hours as a vet tech. Now, I have a hard time getting up the stairs or going to the store most days.

There is a chance I will have to leave school, whether it be temporary or permanent. I tried to be able to split my clinical into 2 half days, but they declined that.

So, I may not be able to be a student or a nurse, even though it’s what I love. I’m trying really hard not to connect my whole identity to this goal, but it’s hard not to when I’m so passionate about it.

Anyway. I really appreciate anyone who read all this. I’ll post an update after my Friday rotation.

I’m terrified and heartbroken at how my life suddenly got all flipped around by chronic illness. I hope I can keep giving you the content I love sharing so much.

[the-corvid-prince]

lupus art

[ID: digital art in purple tones of a white person sitting in a small black rigid wheelchair. his hair has been replaced with many purple butterflies and he has purple butterfly wings. he is wearing a purple sweatshirt with a purple ribbon attached]

-> purple is the color for lupus awareness

-> butterflies are the symbol of lupus

[blitzsicedcoffee]

Urgent care doc: okay so Im gonna put you on propanalol, your heart rate could be contributing to your increased migraines and why it isn't going away. Are you getting enough fluids? You know your heart rate is way high.

Me: oh Its always that high.

Doc: it is??????? (Visibly concerned)

[ladylucksrogue]

I don't write a lot if these kinds of posts but I had a bit of a health scare this past week. I'll preface and say that I'm doing better.

Maybe this will help someone recognize symptoms a bit better than I did, because it really could have gone horribly wrong.

I have several medical issues, including an autoimmune condition called SLE (systemic lupus erythematosus) which I've had for a long time and is well managed. I also used to work in the medical field, and know my body fairly well. As with many people that have lupus, I unfortunately am a bit jaded with certain symptoms because it's always, is it just your lupus or is it something you should go to the doctor for? Because honestly, I've gone to the doctor so often only to hear, yup, lupus.

That being said, my meds make me susceptible to catching every little thing that goes around.

So when I woke up with a stomach ache, I was just like great, a stomach bug. It kept getting worse. Knew it wasn't appendicitis because it was literally my stomach cramping.

It got so bad that I was like I have to go to the hospital because it was literally radiating to my back and I couldn't stand up straight.

It wasn't until I was at the hospital, where they at first assumed it was the stomach flu, that I mentioned the pain in my back too, where they took me seriously. Thought it was my gall bladder (mine was removed). And then mentioned pancreatitis.

I mean I know of it. But I've never seen a case except in a dog. Never thought about it. So blood tests, ultrasound, other tests ensued.

Of course me on google, researching. And then the 40 percent mortality rate in combination with lupus jumped out at me. It's been a rare thing where I've ever been confronted with something so serious. My labs looked too good, Ive had that happen so often in my life. My labs are good till they aren't. I was sent home, with pain meds, waiting on other labs. I finally got clearance yesterday. It's not pancreatitis. I have blood and protein in my urine, nothing new, and although a kidney infection sounds scary it's familiar territory. Still not sure why my stomach was affected. No one knows, mysteries of life.

Everyone knows certain symptoms, like if your right side hurts, could be appendicitis. Medical emergency.

No one talks about pancreatitis though, the symptoms or that it can be literally life threatening too. So consider this my little PSA. I might not have actually had this, but the scare is enough for a lifetime.

Take care out there everyone and stay healthy.

[turtally-tubular]

i wanna make awesome fucking epic art so bad but. the disease.

[wheelie-sick]

Hi!!!! I have a condition called Systemic Lupus Erythematosus which can be fatal without treatment. I'm currently on a biologic which is usually within my budget but last month was $800. this medication is life saving and unavoidable for me due to the severity of my condition. I don't have the money for this and neither does my family. my c@$h@pp is $alexmorgan004 if anyone could send me literally anything to help me pay this it would be so greatly appreciated.

[ID: a cropped image of an itemized medical bill for saphnelo with an amount due of $819.20 dated 4/16/2024]

[berberriescorner]

Hello, my loves 💕.

To be frank, life has been kicking my ass. Sorry, I’ve been MIA. Your girl is just tired and I haven’t had the urge to write anything lately. This has been an…eventful year. Hell, to be honest, it's been an eventful couple of years. Grateful and thankful to be here. Never get that twisted. Life has been smacking me upside the head for quite some time though. All I’ve wanted to do lately is curl up and read.

I’ve also started a bookstagram and booktok, so that’s been getting a lot of my attention as well. I wish I could put into words how I'm feeling mentally and physically but I'm too tired😆😩.

As soon as this lupus flare eases up. Once I don’t have so much brain fog. Maybe I’ll have a desire to write, but until then I hope you all continue to read and engage with the stories available on my masterlist💜.

Honestly, let me be transparent for a moment. I think I can speak for several Tumblr writers. I look at the notes on some of these amazing fics that I’ve read and I'm like, “What the hell? Where are the reblogs and comments?” I’ll say it over and over. The love button is cool, but it’s the bare minimum for that writer. The notes are not matching the constant requests in their asks. That's just the truth🤷🏾‍♀️. The engagement is just not the same. When we bring it up. Were told to get over it. Mind you this ish is free and we've invested our time creating something that brings joy and entertainment. Engagement shouldn't be so hard to come by. If the facts make you feel a way, ask yourself why that is.

Anywho let me get off that soapbox. I just wanted to drop in and give you all a life update and explain my absence. I hope all my beautiful lovelies are doing okay. To those who aren’t, please know it’s okay to not be okay. You’ll get through it. Just keep the faith. Love you my babies🥹💖.

Tagging a few lovelies so that they get the lovin’ I came to drop off😆💖:

@astoldbychae @darqchilddaydreamz @ravennaortiz @rio-reid-whoreee @percosim @lovedlover @jannavaire @sunshine-flower @phoenixhalliwell @kyletogaz @nobodygetsza @1andonlytashae @novaniskye @thebumbqueen @captainwithoutmakingitlove @kinkiicoils @wroteitbutneverwatchedit @bisexuallyattractivebitch @minton131 @thirtysomethinganduncensored @starrynite7114 @fineanddandy @withmyteeth @prettyyybrownroundd

*if I forgot to tag you sorry in advance. Mama has a lot of babies😆🥰.*

[lupusbaby]

Severe pain episodes require an entire extra day to recover from the psychological effects of experiencing such severe pain. It’s kind of just like *what the fuck* for another 24 hours

[gayaest]

Rawiya — her name means “storyteller”. She loves nature and mori kei fashion, and enjoys sunsets! 🌾🐛👒🧸

[serana666]

Why does my body need to play “get run over by bus” simulator with me???🧎🏻‍♀️🚌