Tuesday, January 3, 2012

Why having lupus is as attractive as voluntarily sticking your hand in a meat grinder

What is lupus?

Lupus is an autoimmune disorder wherein your immune system goes batshit crazy and attacks all your healthy tissue at random, whenever it feels like it. Your immune system has declared war; you are the enemy.

(I took this pic in 2009, before my diagnosis, wondering what the weird rash on my face was. Now I know.)

Why it sucks

Think of your immune system like pawns on a chessboard. A lot of people take them for granted, but they're actually very valuable pieces. They're the main line of defense. And, normally, they can't attack their own sovereigns. But lupus changes the rules. When you have lupus, your pawns decide they CAN attack their sovereigns. They leave the enemy pieces (foreign viruses and bacteria) alone and go after YOU until all you're left with is your king hopping around the board by himself hoping to God he doesn't end up in check. 

That and the fact that you could die at any random time from any number of conditions a person your age simply shouldn't have. I once read that being a lupie (that's what we call ourselves), my chances of having a stroke are six times that of my peers. At the time I read that, I was smoking. Reading it made me smoke more as a faulty coping mechanism. That's hard news to digest. 

What it feels like emotionally

It feels like your body has it out for you. It feels like your body wants to destroy you (and it kinda does). So, any time something ELSE goes wrong (like you get the flu) or you get a complication (whether it be a mild rash or something serious like kidney failure) that's just like adding insult to injury. 

And I used to be this being of the sun. I spent my whole days outside; my skin was like copper, my hair was bronze and gold. I ran wild and free and never wanted to go inside. I was so damn alive and I didn't even know it. 

But now, I can't be in the sun anymore. I live life like a vampire, always in the darkness, in the shadows, never seeing the sun. Now, I'm so white I glow (never would've guessed THAT was possible), my hair has gone dark, and I'm anemic. If I step into the sun, my skin will burn and blister because of lupus. Before lupus became a problem, I literally never had a sunburn. Never. 

And knowing you could die young...that is the worst. Because I almost did die young. When I was 12. My appendix died inside of me and fell off. I developed peritonitis, kidney failure, septic shock, blood poisoning, and the beginnings of respiratory failure. Just one of those problems can kill a person. Septic shock in particular has a low survival rate. To have them all at once and live is almost unheard of. I'm a fucking walking miracle. And I'll never be the same again. 

You know that song "If I Die Young" by The Band Perry? That line in there about the "sharp knife of a short life" -- I don't think I've ever heard it said better. There is no sharper knife than that. 

And it doesn't matter what religion you are or if you're religious at all. You are meant to be here. You're meant to do what you want to in this life. And the threat of it all being cut short -- like a constant gun to your head -- is the worst feeling in the world. 

What it feels like physically

I was told by the doctors and nurses when I was twelve that my near-death experience was the most painful thing I would ever feel in my life. (They were right.) They also said my experience was one of the most painful things that could ever happen to a human being. My experience was literal torture. (After all, acute kidney failure is drowning in your own body. You can't breathe. You can't think.) And I had no painkillers, no nausea meds -- NOTHING. I was literally tortured by butchers until my parents found surgeons who would listen, who had the education and skills to recognize what was wrong with me. I actually was saved by the best pediatric surgical team in the world. Otherwise, I'd be dead. 

On an every day level, it feels like your bones are breaking. Your stomach hurts. You puke way too much. And you're generally treated by doctors who barely understand what's wrong with you. (Lupus is very mysterious. They have no idea what even causes it.) 

And as much as I've gone through. I'm the lucky one. Every day is painful, but I had only one truly bad and dangerous spell. (At least, that I know of.) 

Out there, there are kids younger than me dying of heart attacks and kidney failure because of a disease most people are unaware of. Out there, there are mothers who are literally physically crippled, yet pull themselves together to take care of their children. Out there, a million people aren't getting proper treatment because we just don't know enough about lupus to cure it. 


Toni Braxton, Lady Gaga, and Felicia Day are a few people who have an audience, who've used it to raise lupus awareness. Even when they mention it in passing, celebrities raise so much awareness about it -- I don't think they have any idea. Lupus doesn't have as many celebrity patrons as many other illnesses. Like I said: it's mysterious, but not sexy. 

If we had more patrons (and patronesses), we would have more awareness. More awareness = more funding. More funding = more research. More research = a possible cure. 

I understand you're broke. I'm broke as shit because I can't do the volume of writing (my profession) that I used to do. But there's one thing you can do and that is pass on knowledge. Pass on this blog. Tell someone to read it. You know what Captain Planet says, right? "Knowledge is Power!" Well, yeah...Captain Planet is always right. (And I'm not just saying that because the 90's were my wonder years.) Listen to the captain and...

Spread some knowledge; save a life.


  1. Thank you for sharing this Carrie. It takes real guts to be this open and raw about something so personal.

  2. Thank YOU for reading, Mandy. It's more emotionally hard just to get through typing it. But people need to know. It's not just about me. It's about the whole lupus community, their families, and their caregivers.

    And thank you for passing it on. It really means a lot.

  3. Wow. I had a small idea from some of your postings. I've read some but it's too simply put as an immune disorder where the body attacks itself. But until I Lupus as described the way you do...I had no real idea.

    It is good to have it put forth so openly. It does take guts and I think you have that in spades. You are an amazing woman.

  4. I think it's hard for people who have lupus to talk about it. It was very hard for me to type it. I was literally crying. But it had to be done.

    I remember writing an article a long time ago that began "The greatest thing human beings ever did was stand up." I was talking about evolution. They stood up and it lead to EVERYTHING. Art, literature, rockets that go to the moon. It all started with a group of monkeys that stood up.

    Well, that's how I view my survival. My survival is the greatest thing I ever did, because, by continuing to be alive, there is a whole world of possibilities. And if I can make at least one positive change in the world...it would be an honor.

    lol The sad thing is, I could say something smartass like, "I know I have guts -- I've seen them with my own eyes." (Thank you, lupus.) But, in seriousness, I really take your compliment to heart and I'm thankful to you for reading this, and happy to call you a friend.