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#lupus warrior
thelupuslady · 11 months
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Needed my own reminder for my stubborn ass.
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chronicsickness · 1 year
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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.
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indyviree · 3 months
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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.
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sleepypeachii · 7 months
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little lady
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sparkles-and-trash · 6 months
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The medications I need for my chronic illnesses (chronic migraines, lupus, endometriosis ++) have gotten super expensive, so I have to swallow my pride and boost myself a little!
etsy shop - ko-fi - paypal
Reblogs are very appreciated!
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sashi-ya · 7 months
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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! 💖
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autoimmunechronicles · 11 months
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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?
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youngcollectedtired · 11 months
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Something that’s definitely talked about a lot is being bigger sized. But growing up I didn’t see a lot of dark skinned women on media so unfortunately I hated being black. And I also happen to live in a southern area where everyone’s type is skinny and white. So I didn’t get any attention which technically I don’t need to know I’m good enough or pretty because of boys attention. But sometimes it’s nice right?
And then when I was 11 I was diagnosed with a chronic illness. Taking steroids and infusion medication which made me gain more weight. So there’s just something about being curvy, black, and chronically ill that as I get older now at 20 I wonder if I’ll ever get over that. I love fashion, buying clothes and actually wearing things that fit me. And seeing all these beautiful girls and they’re amazing outfits on social media really makes me happy. But every now and then I’m reminded by how lonely I am. Because even just at 20 it seems everyone around me is dating and or married. It has had some kind of relationship or situationship.
So I’m just saying all of that to say that I’m better than I was. I’m comfortable in my skin and I love my style. But some days I’m reminded of how lonely I am. Even at work my coworkers talk so happily about they’re husbands and boyfriends and how easy it is to be happy. And it feels like a slap to the face every time.
How badly I want someone. Someone to make me smile and laugh. Someone I can be unashamed with. Someone who brings me any flower even wild flowers because they know I just love flowers. Someone I can make lunch for and surprise on my days off. Someone who will surprise me with the best place to watch the stars because they know every time I get home late enough I take a moment to look at the night sky. Someone that will hold me when we argue to remind me that he doesn’t hate me. That it’s okay because I know it’ll never be perfect.
I just really feel like I got the bitter end of the deal sometimes. And now I have to start infusions again and who’s going to want to spend the rest of there life with a constantly sick girl. If they didn’t try to get close to me before they definitely won’t now.
Anyone relate?
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livingwithlupus614 · 1 year
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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 💜🦋
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artoflifehealingarts · 4 months
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I love for my art to sell, of course. Mainly because I wish to be able to dance with my greatest lover (Art)~forever and ever, because I know we have.
I just want to stay present and not miss any of it.I love the therapies and good things I am able to get from the proceeds so as not to quiver at the thought of big pharma. I also love how it brings a part of me, little old insignificant & glory filled me, into their homes.
Someone may just be feeling down the day that the art arrives & they open it and smile. They may br feeling lost and look at it on an insomnia filled night and find their way to the sunrise through the lines, patterns and colors.
I have Butterfly art in many places, and want more so they can dance with the scars and lines on my canvas. They mean/symbolize: transformation, souls in limbo, independence, softness and so much more.You can not help a caterpillar transform, if you touch it in either form but especially in the butterfly form too much, to long. . . It dies. It's wings, it's being if affected. To some in Asian old times they were souls in limbo, awaiting their return to the lifestream.As lovers they are very brave. Monarchs travel from Canada to South America for their reproduction. All about butterflies tickles my brain.
Butterfly Soul is the first of 3
All prints are a max 1 of 10
With most being 1 of 3 Shoes, accessories & Art for small spaces as well. Limited editions, first of all because of the upcoming book, second because even if simple or expensive, I don't like things that all have.
If it's unavoidable I always like to make it my own and slightly different. So even in fashion, I rather upcycle /change it up.I wanted to bring that over and into these creations.
I just want as people to have one of very few or one of a kind things. Unique gifts for unique people.
Out of respect and love for all that is unique about you . . .us.
In celebration and awe of that I chose to do limited everything!Long description but I really like butterflies and this series is dear to me, and so this applies to all in the butterfly 3.
Let's just say I like these bugs and I promised a few people that the day I pass on, many many butterflies will be seen.Available in one of a kind traditional multimedia art on Canvas, metal prints, paper prints, canvas prints for desktop and wall, pillows, mugs and maybe some wearable bliss.
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janeisartfull · 10 months
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Within the past five months, something incredible has happened. I've rediscovered my passion for painting, and it has taken hold of me completely. The works I create now are a fusion of vibrant hues and defined edges, embodying a unique style. Inspiration flows from the nostalgic color palettes of the 60s, 70s, 90s, and the soothing pastel trends of yesteryears.
But my journey has been far from easy. Battling an autoimmune disease, depression, and anxiety has been my reality for years. Countless doctor visits, endless prescriptions, and a never-ending series of blood tests have marked the past 12 years of my life.
Yet, my art has a purpose beyond personal expression. I want it to exist because I know I'm not alone in this emotional anguish and physical pain. Many of you, too, face similar struggles. And so, I'm baring my heart and soul to give voice to what we often find too difficult to speak about openly.
Mental health and chronic pain should never be taboo subjects. By sharing my art, I hope to bridge the gap, to spark conversations, and to let others know they are not alone. Together, we can break the silence and bring light to the shadows that surround us.
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thelupuslady · 1 year
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chronicsickness · 1 year
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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.
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useyourblinker · 11 months
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sleepypeachii · 7 months
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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:
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lupus-esque · 2 years
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Hi warriors & hydroxychloroqueenz 💜
I figured that I would post about when I first got diagnosed w/ SLE.
I know I had symptoms way before being diagnosed, but it all made sense after the official diagnosis.
I was diagnosed with SLE in December of 2017; I was 18 years old. In my first semester of college all the way in FL when home was in NYC. I was losing my hair A LOT & I was super sleepy all the time. Eventually the hair loss got so bad and depressing that I flew out to NYC to find out what the hell was wrong with me. After countless blood work, urine tests, and doctor visits, I was finally diagnosed with Systemic Lupus Erythematosus (SLE).
I was so confused bc I only heard about Selena Gomez having lupus, so I did my research instead of crumbling into sadness; KNOWLEDGE IS POWER. I cut all my hair due to the crazy thinning I had and embraced the new me as well as took back my control.
This was the beginning of my Lupus journey, thanks for reading 💗
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