#lupuslife

[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?

[youngcollectedtired]

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?

[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. 

[heatherjpp13]

💜💜💜The road is long & heavy. We never give up. 🙏🙏🙏💪💪💪We get scared & worry about those we love. Our hearts are immensely filled with love with the hope of one day just not feeling one ounce of pain. It's our courage & commitment to our loved ones that keep us going as well as our determination to fight the disease that kills everything inside but not our WILL TO LIVE! These beginning months have been rough & only my close ones know.❤️ I thank you from the bottom of my heart for being there & continually being there. #TeamHeather #lupuswarrior💜 #lupusinfusions #LupusMom #lupuseritematososistemico #lupusanemia #benlysta #Lupus #lupusawareness #lupusambassador #lupuslife #lupusadvocate #lupusdoesntdefineme #LupusNephritis #lupusblog https://www.instagram.com/p/CpnlPOtAm9Y/?igshid=NGJjMDIxMWI=

[carlyjoyortiz]

No because fr why do men feel so comfortable saying stuff like this… but the last few days >> 🩷

[spooniestrong]

Things To Avoid If You Have Lupus

[livingwithlupus614]

The struggle is real

[scottishmaidensworld]

Sometimes reading these is the only thing that gets me through a day. It’s okay, not to be okay.

[lupusdeiii]

Yaşamı boyunca pek çok kez fark etmişti Veronika, tanıdığı bir sürü insan başkalarının başına gelen korkunç olaylardan sanki gerçekten üzgünmüş ve yardım etmek istiyormuş gibi söz ederlerdi, ama işin gerçeği başkalarının acılarından zevk aldıklarıydı; çünkü böylece kendilerini mutlu ve şanslı olduklarına inanabiliyorlardı.

[cozy-comfy-cuteness]

Changed my name

I realized this isn't just a body positive blog, but also me wanting to live my life. I want to get back out in the world. It's been so hard lately. I feel like I am posting things of all the places I would love to go and see. I hope when I move to Ireland I can have a better work life balance. I hope I can get treatment for my Lupus because I have been in constant, unending pain for 25 years and I need some effing relief. I want a life that isn't just lived online.

[fibromyalgia2000]

The pain some days is so overwhelming and there is nothing to help eliminate it completely. The remedy is medications and even there are times that they don’t work because it’s mental emotional and physical. It does not know color age economics only discomfort.

[qveenjordin]

I’m really just tired of acting like I’m okay.

The truth behind it all is that - no one asks for an illness they can’t control. & no one wants to be a warrior all the time. no one wants the constant “compliment” that you are strong, because you made it through yet ANOTHER trauma. no one wants to be afraid to live because you’re waiting for the next “trial/flare” to happen. No one askes for this.

I’m still processing being near death. Still feeling so alone because regardless of the support and love that I’m getting ( that I appreciate every second of) there are only a few people that can understand what I’m going through. I’m thankful to be alive. But, I’m not ashamed to say I’m angry, exhausted, and sad that this is my life right now.

[sheenarose]

I want to share to the world, my private and public selfie pictures. This is a face of someone who is diagnosed with Lupus. This is Lupus Awareness Month!! I probably had lupus from the time I was a child and I didn’t know. I would have huge ulcers in my mouth, I bleed blood in my urine and had many many test, the doctors couldn’t find anything.

Later my eyes will swell, my face, then my throat started to tightening.

From there, everyday I felt as though I was dying. I even imagined my own funeral and told my mom to bury me in my favorite red dress. My mom didn’t wanted to hear this but I was ready to die.

One day @colourcodedmakeup saw me and told me to go and check out that rash on my eye to find out it was a ring worm but then we did more test to find out I have Lupus.

Since then, my life have turned around. I learned I have to eat differently, avoid the afternoon sun, do not stressed out yourself. I have to do soft exercises like yoga and swimming. I saw how my body was swollen and transformed to who I am today. I gained weight , now I lost a lot of weight.

I remembered I announced to the world last year that I have lupus...and it’s ok. I don’t feel like I am dying anymore, I actually feel alive.

To be honest...my body attacks me everyday, I get joint pains, brain fog, short term memories, headaches, throat still tighten but I am 80 percent much better than those years of not knowing.

Let’s celebrate those who have chronic illnesses, The warriors and say cheers for being you! Clap your hand for us because getting up from bed is also a big task.

So again, this is a face of someone who has lupus, chronic illness and could be considered as disability as well.

Let’s remember and say cheers to Lupus Awareness Month!💜💜💜💜💜

By the way, the color purple represent Lupus, so in the next photo, I am represent Lupus Warriors! Cheers!

Thank you to the doctors, family, friends, supporters and everyone who were always cheering me on!

#sheenarose #artist #lupuswarrior #lupusawarenessmonth #chronicillness

[my-life-now-with-lupus]

I am very much learning myself about lupus, and keen to help others understand it as much as myself.

When i see other people’s stories and blogs it’s really comforting to know it’s not all in my head.

I’m sure to some I look too well, and can do too much to be ill. I’d be lying if I haven’t thought that of others myself at times. I’ve passed comment that now I see could be hurtful, and lack understanding or empathy.

Who would have thought telling someone they look well could be upsetting? But it is at times.

Gone are the days of blusher… I spend time now covering the ���natural glow’. No need for sun bed either… the high bilirubin in my bloods gives me a more tanned appearance.

The weight loss initially felt great… but I rather I didn’t need to buy new bras!

As for doing too much… yes 👍 I am, I’ve always feared laziness and not making my time productive.

I take advantage of when my head is clear to do what I can- and that is seen, what less people see is the grumpiness, the mood swings, the napping, and the recovery or even prep to achieve those days. Ask the suffering other half he bares the brunt of it. But I too have questioned others in the past myself that have met friends for nights out whilst off sick - to me sick was in bed not able to get out- oh how you fall.

I do hope that this blog and accounts such as the one in the picture help to raise awareness not only of lupus but for the many other auto immune diseases that are a lot of the time invisible but very much present .

[stochastique-blog]

hmm...

More testing pulmonary 🫁 #lupuswarrior💜 #lupuseritematososistemico #lupusawareness #lupusambassador #lupus #lupuslife #LupusMom #lupusanemia #benlysta #lupusadvocate #lupusdoesntdefineme (at NYU Langone Orthopedics) https://www.instagram.com/p/Co7wCknJxRo1i8h8nEQD9poJ0QtU4ysmvaPROk0/?igshid=NGJjMDIxMWI=

[overcomingoverthinking]

It’s Lupus awareness month!

Yesterday May 10th, was World Lupus Day.

For those of you who don’t know what Lupus is, lupus is an autoimmune disease where the immune system attacks its own organs and tissues.

It is hereditary and called the “women’s disease” because it is found in more woman than men but if found in men it’s considered rare and in some cases, much worse..

Lupus also causes other issues within the body, and can be considered a copy cat because of how alike these symptoms (fever, fatigue, joint pain, weight changes, swollen glands, skin issues such as butterfly rash etc.) can be found in other various diseases. Which is why I always encourage everyone especially women to speak to a rheumatologist to run the right tests if experiencing these symptoms because it can take years and several doctors to make a solid diagnosis if unsure.

It’s an everyday battle physically, mentally and emotionally. Some days I feel normal and other days I’m very fatigued and I’m physically down or mentally down. I’ve compared myself to feeling stiff like the tin man because my joints hurt on most days or like I was hit by a bus because my muscles are very sore on others. Sometimes I’ve even felt like a guinea pig because of so much medications I’ve had to take to control it. But over all stress management has become very important to me which has led me to making sure I have the right kind of people around me. I’ve even had to learn to change my diet. I try my best to take care of myself. I can tell you I am not the same person from when I first got diagnosed 6 years ago. I appreciate life so much more now and I know I’m not alone on my journey. I am a lupus warrior. I may have lupus but lupus doesn’t have me!

I only hope that this post is helpful and finds its way to those who needed it and can raise awareness to those who do not know.