#lupuslife

[livingwithlupus614]

The struggle is real

[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 >> 🩷

[livingwithlupus614]

All of this is so true

[spooniestrong]

Things To Avoid If You Have Lupus

[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.

[livingwithlupus614]

I still gaslight myself, even though I’ve been diagnosed and treatment has greatly improved my quality of life. The first two rheumatologists I saw after becoming symptomatic told me I didn’t have lupus, that my symptoms were in my head and I was just anxious. That that has stuck with me and often makes me doubt that I actually have this disease. I have to constantly remind myself that this is real, that I truly do have lupus. I remind myself that my current rheumatologist wouldn’t have me on such heavy-duty immunosuppressants and biologic infusions if I didn’t actually have lupus. Medical gaslighting has made me anxious about going to new doctors or expressing my concerns to new and current doctors. I am so tired of being invalidated by other people and even myself about my illnesses. Being chronically ill is so mentally, physically, and emotionally draining.

[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.

[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 .

[heatherjpp13]

Infusion time for this Warrior!!! #TeamHeather #lupusanemia #lupuswarrior💜 #lupusinfusions #lupuseritematososistemico #Lupus #lupusawareness #lupusambassador #LupusMom #lupuslife #lupusdoesntdefineme #benlysta (at Crystal Run Healthcare) https://www.instagram.com/p/CpNpphSMZ-j/?igshid=NGJjMDIxMWI=