#systemic lupus erythematosus

[thelupuslady]

[gayaest]

Rawiya chibi 🪺🪷🍈🧸📚

[lupusbaby]

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

[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]

[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...

[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.

[4spooniesupport]

[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.

[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😆🥰.*

[serana666]

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

[kellylynncurry]

I want my old body back Before the medication ravaged it And distorted it Gave it these aftereffects And turned it into this wreckage — Kelly Lynn Curry

From the book Radiant Poppy

[gayaest]

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

[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

[wheelie-sick]

So you just got diagnosed with inflammatory arthritis....

A guide to coping with inflammatory arthritis written by someone who has been living with it for years

1. Warmth helps with pain and stiffness

Take a hot bath or shower

Use a rice bag to heat your most stiff and painful joints - How to make a warm rice bag (no sew) How to make a warm rice bag (sew) Adorable heated stuffed animals

Heating pads can also be good for heating specific joints (I don't like either of the ones I've had so I'm not dropping a recommendation)

2. Compression helps with stiffness

Compression gloves work really well in particular - Really cool compression gloves

Compression for other joints works well too

3. NSAIDs help reduce inflammation in your joints

Topical diclofenac is my personal favorite, it works wonders

Meloxicam is only available by prescription but has fewer negative side effects than over the counter NSAIDs do

Ibuprofen and Aleve/Naproxen are both OTC NSAIDs

Here's a full list of NSAIDs

4. Steroids reduce inflammation but are usually only used for flares. If OTC remedies are not working for your arthritis it may be worth asking about steroids to manage flares

5. Use adaptive devices

Note that I haven't tried all of these!

In the kitchen - Jar opener, pull tab opener, arthritis friendly silverware, ergonomic knife, another ergonomic knife

In the bathroom - My favorite shower chair, long handle bath sponge, shower grab bar

Dressing - Many button and zipper aids, magnetic jewelry clasps, sock aid

Standing assists - Bed rail, couch stand assist, cane with stand assist

Office - Pencil grips, book stand, vertical mouse

Other - Arthritis friendly gardening tools, so many grips adapters and holders

.... and many many more

6. Use mobility aids - I'd strongly recommend talking to a doctor before deciding to use mobility aids. mobility aids cause damage to your body so it's important to weigh the pros and cons of using them. Anyways my personal recommendations:

Canes - NOVA T cane, Carex ergonomic offset cane

Crutches - Millennial In-Motion Forearm crutches

Other people with inflammatory arthritis are welcome to add on!

[thelupuslady]

*SMAK*💜