#systemic lupus erythematosus | Explore Tumblr Posts and Blogs

thelupuslady · 1 year

Text

#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

12K notes · View notes

wheelie-sick · 1 month

Text

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]

#cripplepunk #cripple punk #physical disability #physically disabled #chronic illness #chronically ill #systemic lupus erythematosus

470 notes · View notes

gayaest · 9 months

Text

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

#my art #art #physically disabled #disabled artist #forearm crutches #SLE #systemic lupus erythematosus #vitiligo #alopecia areata #mori kei #mori kei fashion #character design #original character #babe with a mobility aid #disabled and cute #i hope that the urdu spelling is correct! i kept researching but it kept giving me different spellings!#alt text in image ID

1K notes · View notes

chronicsickness · 2 years

Text

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.

643 notes · View notes

cryptar · 7 months

Text

the phrase 'you are your own worst enemy' phrase really hits dif with lupus huh

#lupus #SLE #systemic lupus erythematosus #chromic illness #actually chronically ill #cryptic ramblings

70 notes · View notes

indyviree · 4 months

Text

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.

#lupus #lupus warrior #systemic lupus erythematosus #autoimmune #autoimmine disease #chronic illness #chronic pain #chronically ill #joint pain #chronic fatigue #disability #arthritis #living with lupus

32 notes · View notes

wanderingmind13 · 1 year

Text

Invisible implies unable to be seen

The diagnoses I carry are labeled as such and maybe people can’t imagine, don’t want to imagine but it’s easy to dismiss something you claim is hidden from sight

what I experience is far from unseen

My disease reveals itself in the armor I don for battle each day, compression as a second skin, braces and tapes to hold together tissue and bone frail and bird like

It is visible in the hours spent in waiting rooms, the familiarity of cold, clinical sterility associated with pain

My skin bears the burden of illness, marked with bruises and scarring delicate as aging paper

Punctured daily with medicine intended to heal glass bones but simultaneously eroding my spirit

At times flushing on my face akin to a butterfly’s resting place, red hot wings branded onto flesh

This malady is seen in the repeated fractures and tears, limping and adjusting to find relief

It is identified in my need to sit, the sweat that blossoms when I must stand, the blood pooling in extremities, swelled and discolored

Mostly it is evident in the absence of me, the late night gatherings that happen as I rest, physical activities exceeding what I can give

The pain and exhaustion dragging me back to a point of isolation, one from which I’d escape if I could

The manifestations are intricate but revealed with empathy and the mindful gathering of information

To call my conditions invisible negates the palpable evidence of affliction

Minimizes my experience

And exacerbates my pain

#invisible illness #pots #ehlers danlos #ehlers danlos syndrome #osteoporosis #celiac disease #lupus #systemic lupus erythematosus #spoonie #chronic illness #chronic pain #invisible disability #writing #my writing #poem #moleskine

130 notes · View notes

sillymcrandom · 4 months

Text

one time i was on roblox and i said i was physically disabled and someone was like “whats wrong w you” and i said i had lupus and possibly other stuff and they were like “thats not a disability you gotta be in a wheelchair or missing limbs or something” like….bro how is that NOT a disability 😭😭

(also this is no dig at anyone whos a wheelchair user or has limb differences i love/care yall [platonically] im just sick of ppl that have very narrow views of disability)

#this happened a while ago so im kinda paraphrasing here but yeah #ableism #disabled #physically disabled #lupus #systemic lupus erythematosus #living with lupus #cripplepunk #cpunk #cripple punk #roblox #the game was rate my avatar btw bc ofc it wad #was*

26 notes · View notes

pinxyreaps · 6 months

Text

It’s sad how much this happen. Every-time either my blood squirts out my arm or they can’t find it and have to do a sonogram on my arm.

#epileptic problems #disability advocacy #medical stuff #disabilities #seizures #invisible disability #fibro problems #fibro #physical disability #actually disabled #systemic lupus erythematosus #pots #potsie #pnes #if you know you know

34 notes · View notes

sedehaven · 1 month

Text

Abide

a space of naked skin, pale as sour milk, at the crown of my head, hair falling like spiderwebs

covering nothing

my liver swells past the boney constraint of ribs, a hardness that calls my fingers to rest there,

a blind of fingers and palm

this lump of flesh presses down, intruding into empty space, into my bladder and bowel -- both scream urgency, even

empty, they are haunted

the vertigo crashes over me like ocean, dredging up scattered light, fractured seizures, the rattling breath of dying neurons

i am a house, falling

cobwebs and cages, rickety beams and the wail of lost souls, lights flickering, death making his inspection, finding the rot

yet still, i live yet still, i abide

#poetry #spilled ink #inkstay #poetryriot #writerscreed #poem #poets on tumblr #twcpoetry #allpoetry #lupus #systemic lupus erythematosus #living with lupus #variegate porphyria #porphyria #chronically ill #chronic illness #actually diabetic #hair loss

12 notes · View notes

berberriescorner · 5 months

Text

Sooo…I had a follow up with my hematologist.

Guess who starts yet another cycle of iron infusions next week?!

This lady 🤦🏾‍♀️. I’d go into detail, but at this point who knows what the real answer is 🤷🏾‍♀️. I’m just venting lovelies. Tired of being tired. Tired of being out of breath. Tired of lupus flare ups. Sick and tired of being sick and tired.

Yes, you get used to it, but man! I want to get back to a place where I have enough energy to do the things I love. Welp I guess it’s good I ordered all those damn books lmao! Now I’ll have new reading material for my infusion appointments😆😩🥹.

Okay enough of being an emotional lil bish. Back to being a sensitive thug😆😂🤣.

How my babies doing though?!

#berberriescorner #just venting #i’m just tired #anemia sucks #iron deficiency #lupusproblems #life with lupus #systemic lupus erythematosus #lupus nephritis #lupusfighter #living with lupus #lupuswarrior

25 notes · View notes

wheelie-sick · 1 year

Text

shout out to the people whose illness caused them to lose their hair

shout out to the people whose medications caused them to lose their hair

shout out to the people whose hair is completely gone

shout out to the people who have bald patches

shout out to the people whose hair is thin

shout out to the people who choose to cover and hide their hair loss

shout out to the people who embrace their hair loss

you all deserve the world

#chronic illness #chronically ill #physical disability #physically disabled #cripplepunk #cripple punk #systemic lupus erythematosus #hair loss

1K notes · View notes

gayaest · 8 months

Text

A hangout at “the sea” 🌊🌤️🌈🌺

[ID in alt-text] Gali, Rawiya, and Hiraya!

#my art #art #original characters #disabled artist #disabled oc #oc #illustration #disabled and cute #visually impaired #systemic lupus erythematosus #alopecia areata #gastroparesis #amputee #osseointegrated prosthetic

609 notes · View notes

sparkles-and-trash · 6 months

Text

🧵 health, ableism ++

Yesterday a doctor, a seasoned guy who’s worked 40+ years, told me the reason I’ve met so much resistance with the health system;

Here, the doctors see you as «a waste of reasources» after three spinal/back related related surgeries.

I was 19 when I reached their limit.

They deemed me a lost cause at 19, years old.

The reason I had those two extra surgeries after the first, big one?

The healthcare system trying to save money.

Today, everyone who gets a scoliosis surgery like mine gets titanium right away.

When I was 13, got made 7 cm taller, got two rods and 20 bolts drilled into my spine, it was just steel.

I had a violent reaction that turned to all of this getting infected and that worsened until I was 16, when they finally made the switch to titanium.

But by then it was too late, and the infection got worse as it returned, and at 19 I had to have it all removed, which is high risk and still scary.

My spine is so fragile and fucked up now.

This all turned into other issues, and since then I have been diagnosed with chronic migraines, lupus, pcos, and endometriosis.

The first one is the only one I’ve been offered any long lasting treatment for, and now it makes sense.

After a lot of fighting I am now getting surgery for my endo, but that took years of work.

And now I know why.

Lupus is a serious fucking condition.

They all are, but if one of them is gonna kill me anytime soon, chances are the lupus will do the job.

But the only treatment they’re willing to offer at this time is pain management.

Maybe, when, not if, when, I get worse they’ll try something else, but probably not.

Because I’m a lost cause, a moneypit, a person beyond the hope of rehabilitating enough to help society.

But I’m still a person.

I deserve a life, and I know I, even if a wreck, can do little things to make others happy.

Make a little bit of change.

A disabled friend once told me he’s so tired of having to be either a hero or a tragedy to able bodies people.

Because sometimes, we’re both. Or neither. And that’s okay.

We are so much more than ableism wants us to be.

I’m not even sure what I wanted to say with this, other than the fact that I know talking about these things are the only ways things change, that people open their eyes, and that we can grow together.

Thank you so, so much if you read all of this.

Thank you ♥️

#health #ableism #personal #disability #disabled #lupus #systemic lupus erythematosus #scoliosis #scoliosis surgery #chronic illness #endometriosis #chronic pain #irl tag

38 notes · View notes

kellylynncurry · 21 days

Text

As I tear at the walls of my body, my home

I suffer and I bleed

The loathing bombards the scars, freckles, and stretch marks

I try to rebuild; to patch myself up with self-assurances

Building bricks of love and happiness

To not grow into any set mold

To blossom into a wildflower:

Fierce, delicate, blooming.

— Kelly Lynn Curry

Book: Radiant Poppy

8 notes · View notes

chronicsickness · 1 year

Text

the amount of medical gaslighting that happens to people with chronic illness is so disappointing. Every single chronically ill person that I know have experienced some form of it. I feel like there should be guidelines in place before people in the medical field are able to throw someone’s mental health, age, or appearance in their face. So many people get sicker or go undiagnosed and without treatment for so long because of this. It breaks my heart looking back at the way I used to have to beg for help and leave every appoint disappointed and in tears because no one would take me seriously. My heart goes out to anyone in the midst of that. Please don’t be afraid to let them know if you think they’re wrong, please don’t be afraid to advocate for yourself. I wish I did sooner. I waited 5 years to find a good team of doctors and a diagnosis. It takes most people 6-10. It shouldn’t be like this.

82 notes · View notes