#lupusfighter

[berberriescorner]

Sooo…I had a follow up with my hematologist.

Guess who starts yet another cycle of iron infusions next week?!

This lady 🤦🏾‍♀️. I’d go into detail, but at this point who knows what the real answer is 🤷🏾‍♀️. I’m just venting lovelies. Tired of being tired. Tired of being out of breath. Tired of lupus flare ups. Sick and tired of being sick and tired.

Yes, you get used to it, but man! I want to get back to a place where I have enough energy to do the things I love. Welp I guess it’s good I ordered all those damn books lmao! Now I’ll have new reading material for my infusion appointments😆😩🥹.

Okay enough of being an emotional lil bish. Back to being a sensitive thug😆😂🤣.

How my babies doing though?!

[lupus-esque]

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 💗

[heyspoonie]

Can someone get me a bunch of new organs please? Thanks a lot.

[learntolive-again]

I am NOT obligated to tell you why I'm using a cane.

And you do NOT have the right to get mad at me when I choose not to answer you.

Thanks. Carry on.

[ravenshivers]

Dear Butterfly; Dear Dragonfly,

Because of you, I have to lie. Have to pretend I'm fine.

You've helped me to identify, to find my kind. But why?

Something I wonder every day. The price I have to pay

simply to be me. Don't you care? Can't you see?

I'm not one to cry out, "Why ME?" —not specifically.

I know that I do know the why. Your wings; they've helped me fly.

But it's always half truth and half bullshit.

Sometimes it overcomes, and I can't handle it.

You know me well so I've not much more to say but

there are times I wish you two would fly away.

But, I know you'll forever stay. Grow more attached.

Leaving me dog sick, nerves wracked.

The only alternative is death.

And I'm here. Here for each and every breath.

My future is now and that is where I shall live.

Thank you for helping me learn what I can give.

[beautifullyautistic]

Fuck guys. Lupus is flaring bad. My hair is falling out. I can barely keep my eyes open or move. I make it to work and then collapse when I’m home. I feel stuck in this never ending cycle. If anyone has some positive thoughts to spare or some advice or kind words, I could use them right about now.

[twistedcharismaaa]

I’m still beating Lupus. Thank you Jesus. 💜

[dezzydoesthings]

isolation

Never going out: Check. Wearing a mask when you do go out: Check. Wiping down groceries with disinfectant wipes: Check. Not shaking hands: Check. Washing hands a lot: Check. Sitting in your house day after day surfing social media and playing video games to cope: Check.  This is my daily life. This is life with an autoimmune disease. My life in isolation has not changed. I’m always isolated.