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! 💖
