#sle

[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

[tsubaki94]

Jak and Daxter babysitting

If you know any good jnd fanfic I would love to read them?

#babysitting #fanart #Jak #Daxter #torn #Mar #kid jak #jak 2 #renegade #underground #Kor #water color #jnd #jak and daxter #sle #playing #Jak needs to smile more #Torn don't give a crap #Daxter is a great friend

[stonedstargazer666]

CREDITS TO ALL OF THE ORIGINAL OWERS OC

Here’s more pictures I’ve collected, and the collection keeps getting bigger

#ii sleep token #iii sleep token #sleep token worship #vessel sleep token #sleep token band #iv sleep token #sle

[cryptar]

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

[wheelie-sick]

got my labs for CNS/NPSLE done and I'm so nervous for the results either way

not having CNS/NPSLE means my neuro symptoms are a mystery

having CNS/NPSLE means that I need harsher medication to treat my lupus

there's no winning with the answers

#SLE #systemic lupus erythematosus

[myalgicencephalomyelitiscfstom]

A webpage from a UK charity I came across called Lightaware

There is more information on their website.

#SLE #autism #migraine #MEcfs #led

[spooniestrong]

#spooniestrong #spoonie #lupus #sle

[picsfortheday]

#funny #love #cute #cats #memes #kitties #sle #morning #grumpy

[sashi-ya]

Hello! I'm curious about something if you want to talk abou it. Could you tell me more about lupus? How did you get it and which symptoms do you have? How you get through your days when you have them? You stay at home?

Sorry for the many questions but I don't know physically nobody that has it and I'm curious. Hope you are well!

Hello hello!! of course! It's always a good moment to spread the word and inform about certain illnesses, so thank you for asking!

TW: This is MY personal experience and my medical knowledge (rn nurse uni degree, med school student). However if you have the following symptoms DO NOT assume you have the disease, BUT VISIT YOUR DOCTOR. And, if your symptoms get underestimated don't be afraid to visit others. YOUR SYMPTOMS ARE VALID, YOU ARE NOT LAZY, YOU HAVE A REAL PROBLEM.

What is Lupus or SLE? So, basically Systemic Lupus Erythematosus (aka Lupus) is what we know as an AUTOIMMUNE DISEASE. What it means is that basically your own immune system attacks the body's tissues because it recognizes your own body parts as "threats" (like it would consider a virus or a bacteria, like something coming from the outside to hurt your insides). When your tissues get attack, that means your organs and body parts will suffer damage. And, unfortunately being "systemic" means that it can attack any tissue, such as skin, kidneys, brain, eyes, lungs, etc.

How did I get Lupus? I have no idea, as a patient nor as a future doctor or as a rn nurse. This little shit comes with you since the day you are born inside your dna, however not always it manifests. Some do not have symptoms until one day, others have symptoms and signs all throughout the years (me) and never get diagnosed until it becomes REALLY visible (let me make a little note here: even if the majority of lupus patients are female, we often get misdiagnosed because of the misogynist look that the medical field still has. Women often get called "lazy" or "dramatic", until you have eye or kidney damage like me).

Symptoms So, it varies. Lupus is not just SLE. There are a lot of different types (4), from cutaneous, to systemic, to neonatal, and even there is another type that can be induced by certain medication (this is one of the reasons why we should never auto medicate).

Important note: all autoimmune disease gets triggered, awakened, crazy when we are under high stressful situations. The outburst of the symptoms are often (if not always) triggered by a stressful situation and these are called "LUPUS FLARE UPS". So, in my case some symptoms are:

fever with no apparent reason (while being totally "healthy". This I had it since I was a kid, no fucking doctor EVER give a fuck about it. My mother got told that "I was probably having a tooth infection" spoiler: no, i didn't).

skin rash and what looks like "eczema". Sometimes over the bridge of my nose and cheeks, this is called "malar erythema" or "butterfly rash" and it looks like you have a red butterfly on your face.

joints pain / muscle pain (it hurts like a bitch, sometimes you can even move your legs) and muscle weakness. I had my right knee cartilages degenerated, also because of Lupus.

Shaky hands (and sometimes I can't even open a bottle of water cause I don't have muscle strength).

cognitive problems (i can't remember shit, sometimes I can't study, anxiety attacks, etc)

Last year during this month I got something called "ANTERIOR UVEITIS" for which I am still paying the consequences. My right eye got super inflamed and red and some parts didn't receive enough blood (like a stroke) and I lost some % of my visual capacity.

Renal problems (p a i n, stones, etc)

weakness, tiredness, sleepiness (I also have hypothyroidism, which causes me to have 0 energy so I live off energy drinks: DO NOT DO THIS)

A lot of sadness and depression.

What do I do when these symptoms hit? unfortunately there is no much you could do. I learned that nobody in the "adult world" gives a fuck about you being sick and nobody will wait for you. University don't care. Jobs either. So, what do I do? I try my best and work/study as "i can". Sometimes I just can't stand from bed, so I am lucky (and at the same I am not) to live with my family who often helps me to even go to the bathroom. I try to do stuff until I can't stand in two feet and that's when I call my doctor to ask for a permission to rest (Argentina is a country where is pretty difficult to leave your parent's house earlier like the rest, we are kinda poor and rent is EXPENSIVE)

I hope I have answered some of your doubts, and I am very very open to answer more if any wants to ask! 💖

#tw: illness #SLE #lupus #systemic lupus erythematosus #lupusawareness #lupus warrior #my life with lupus

[crippleprophet]

in need of involuntary movement advice

hi besties, so i have lupus that is currently untreated and have been developing a lot of neurological issues, most likely as a consequence of this. we are suspecting:

1) cerebellar ataxia because i list to the left, i have an intention tremor, my balance has gone to hell standing & walking and is worse with my eyes closed, and i’ve got dysmetria (issues with finger-to-nose test)

2) some sort of movement disorder(s) affecting the basal ganglia. i experience what seems to be dystonia (slow twisting movements & muscles being held still in a certain position), chorea (jerky sudden movements), and ballismus (large flinging movements). the involuntary movements seem to get worse with directed movements, especially fine motor skills (possibly in some sort of relationship with the intention tremor), and strong emotions such as distress or excitement.

these have been getting significantly worse recently, and i’m especially concerned because my involuntary movements have “spread” to involve my legs and throat/tongue. i’m really struggling to find any practical advice & not just bullshit about exercise & taking care of your mental health or how brave caregivers are. my questions are including but not limited to:

if i’m walking while my legs start flinging, what do i do? i’ve started using my upright rollator around the house but i don’t think it could keep me from falling in that scenario

harm reduction in cooking for myself? i already don’t use knives but i’m worried about spilling boiling water or injuring myself with scissors

how to not break dishes. i need to use ceramic & glass because they can more reliably be cleaned for my allergy needs. someone suggested several small tables between the kitchen and couch which i’m going to try but would love any additional ideas as well

eating. i already use adaptive silverware and i think i’m going to invest in some bibs but it’s still so difficult

advice for choking - how to minimize it, what to do during it, etc

do you just take a pillow with you all the time or…? like i start hitting things around me really hard

we’re trying to find a community member who would be willing to drive me to appointments but in the event that i have to take a lyft somewhere, what do i tell the driver in case i start whacking their car?

if i for some reason have to be out alone, advice for not getting murdered by the police and/or forcibly hospitalized?

thank you so much to anyone who has advice, including any resources on where to look up this type of information!! i would really appreciate any reblogs for visibility

#chorea #ballismus #dystonia #movement disorder #involuntary movements #chronic illness #neurological disability #ataxia #cerebellar ataxia #lupus #systemic lupus erythematosus #sle #mac.txt #movements of the uncontrollable body

[tspelizabeth]

A friend of mine’s friend’s sister (i know its convoluted but i know its a real person and a real gofund me is the point) needs help with medical bills

#pakistan #programmer #gofundme #medicalhelp #sle #aps #pulmonary embolism

[gayaest]

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

[mandana-the-service-pup]

I wish I had more Lupus friends bc since I’ve been taking sun protection measures I haven’t had a tummy ache or car sickness. I was literally taking three Tagamet 2-3 times a day for months and I’ve had motion sickness every car ride for my entire life and now it’s just gone?

It’s only been a few days but if any Lupus buddies could tell me if cutting out UV exposure can have immediate affects like that I would be really grateful 🥲

I’ve also recently started Plaquinel but this wasn’t a gradual improvement. It completely went away as soon as I started doing the whole sunscreen/UPF clothing routine. But idk if it’s just a coincidence, placebo effect or if the sun really was making me that sick all the time.

#chronic illness community #disabled community #lupus #SLE #systemic lupus erythematosus #new diagnosis #sun protection #uv radiation #photosensitivity

[wheelie-sick]

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

#chronic illness #chronically ill #physical disability #physically disabled #autoimmune disease #systemic lupus erythematosus #SLE

[heardatmedschool]

Med student: Did you know that a mouth ulcer that doesn’t hurt could be from lupus?

Odontology student: That shit’s cancer until proven otherwise.

#faculty crossover #medicine #med school #medblr #odontology #lupus #sle #cancer #tw cancer #odonto is right #pinned

[spooniestrong]

#spooniestrong #spoonie #lupus #sle