#lupusawareness

[sparkles-and-trash]

Sometimes it feels like people kinda forget your pain when it’s chronic.

When someone healthy/able bodied gets sick or injured, people will pour out their support and understanding right away, which is good, obviously.

But after a while, people get tired of hearing about it.

They get tired of having to work around it, tired of having to be understanding.

But just because your empathy fades, doesn’t mean our pain and grief does.

I’m so, so tired of my pain. Of having to be understood. Of not having any chance to have a proper career, or dreams, or relationship.

I’m tired of my hands not working enough for me to write, draw and craft, which is what is normally keeping me going.

They just keep getting worse.

I’m tired of the pains related to my endometriosis and pcos making me unable to eat properly, get any exercise, and for making me bedridden more and more these days.

I’m tired of having to beg for support in what little buisniess I manage to make sure I survive during my rough recovery periods after surgeries and bad flare up’s.

I’m tired of knowing my life will not be a long one.

I’m tired of complaining, of being in pain, of grieving, of feeling like a burden.

There are no breaks for me.

That doesn’t mean I get used to it. I will never be used to it.

And I think I should be allowed to talk about all of this without feeling like a burden.

I probably won’t ever get to that point, but this is me trying to get there.

By being open and honest, and hoping that at least one person takes the time to read.

If you’re still here, still reading, thank you. It means the world.

Be kind to those around you who are like me.

We’re not happy about our situations, either, but having people willing to stick around and listen makes it a little easier to survive.

Thank you ❤️‍🩹

[thecovenhouseco]

Sometimes being disabled means you miss out on a lot of thing’s because you’re to busy healing from the day before, and that gets really lonely and depressing.

[yes-brandeebleueaurelie]

If all else fails, remember, you can always wear a 😻🕺🏼 #catsuit!

[sleepypeachii]

little lady

[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! 💖

[lordcringe]

Repost from instagram cause🤓

Im no doctor but its best to spread awareness👩‍⚕️🥼🩺🏥

[autoimmunechronicles]

I know many of us can relate to feeling like a burden and even those dear get tired of being around chronically-ill people such us ourselves.

How do you cope with depressive thoughts?

[livingwithlupus614]

Weight gain is a known possible side effect of some lupus medications, especially Prednisone. I take prednisone daily and have the notorious “moon face” that this medication is known to cause, which can really affect my self-esteem sometimes. This poor woman has the world bullying her over an unavoidable consequence of the meds she takes to keep herself alive and that is despicable. I am grateful that Selena Gomez uses her platform to spread awareness about lupus, so it really hurts my heart to see her getting picked for her weight, especially since it comes from her taking care of her health by taking her meds 💜🦋

[itssybcalling]

Awareness is so important!!

[countfagula]

I know I already made a disability pride post but using Picsart is quite fun! So here’s are some of my disabilities!

[my-life-now-with-lupus]

So, it’s still here. 

It’s no longer as wild.

I keep asking - are you sure? 

I’m all or nothing, pacing is becoming a repetitive challenge. 

Trying to achieve a balance- sacrificing, functioning, surviving, living.

Grieving for the life that you haven’t got the energy, memory, stamina, medical record for.  

Things you took for granted, which now fluctuate making it difficult to make plans, to commit, to show up. 

Hard to Accept that it’s difficult for others to understand when not wearing your shoes. 

The invisibility, the need for validation but not wanting or seeking sympathy or attention. 

I should be doing more taming, 

But I want to kick it out the park. 

I want the sprint finish- not the life marathon. 

It’s still here. 

[sparkles-and-trash]

My medicinal botox that I need to get tomorrow have gotten sooo expensive, and I have another perscription I need to get before the con this weekend, and I genuinly cannot afford it so if anyone can help…

ko-fi - paypal

I know times are tough for everyone, and don’t expect anything!!

I just figured that I never fish for tips (nothing wrong with that either!!) so now is as good a time as any! 🥺👉🏼👈🏼

[thecovenhouseco]

Waiting for a diagnosis is awful because you know you’re suffering, and you know if this thing you’ve just been tested for comes back negative? It’s one less question answered.

[yes-brandeebleueaurelie]

Goodbye July, Hello August... fuck you both; I'm waiting for September!

It's too hot!

[sleepypeachii]

Dearest Diary,

I think I'm actually coming out of my flare! At least… I hope so! Whenever I say such optimistic things, I feel like that only guarantees a backslide.

 I left the house again! I had a lash appointment, therapy, and then, a rehearsal! All of these things went very well for me :)!

 I'm starting not to shrivel up in fear whenever I go to a room with more than three girls in it, which is exciting! Going to get my lashes done or my hair done now doesn't feel like a daunting task. I need to completely mentally prepare for.

Counseling went well, I love getting to do it outside. It also helps that my counselor offered  her beautiful property as a venue for my wedding next year, I cannot stop staring at all of the green beauty while I rant and rave!

Cole picked me up from counseling, and then we went to our rehearsal. It went so well! I felt so valued and the guy who was auditioning me apparently thinks I am God's gift to the earth- huzzah!!!

Work part of the day: period cramps! Thanks endometriosis!

Gonna try to fix my sleep schedule :)

Pics of the day:

[sashi-ya]

Last days have been painfully exhausting in terms of emotions. And today, after being able to spit outloud all the things I've been keeping to myself I am experiencing the symptoms of a Lupus flare (this time rash and muscle pain, etc). Emotional stress is very real guys. To all of my autoimmune disease warriors BE CAREFUL with keeping all to yourself. Speak with someone or come to speak with me if you need. Unsatisfied accumulated emotional needs are fatal for our bodies. (And all healthy people too)