April 25th, 2013
I’m not going to lie. Things have been a little poopie around here lately. For one thing, it won’t stop snowing. It’s gotten kinda ridiculous. Poor Harley Rae is from Tennessee and isn’t sure what to make of it. Too cold for southern dog! And beyond that, I’ve been feeling like poop too.
If you’ve been following this blog for a while, you will know that I’ve been struggling with a MYSTERIOUS ILLNESS for a WHILE. It’s kind of a long story. And it’s pretty annoying. But basically, I have a super FREAKED OUT IMMUNE SYSTEM that likes to MALFUNCTION in all kinds of weird ways. For the last seven years, I’ve been diligently going to the doctor trying to get answers. I’ve gotten diagnosed with all kinds of things. Symptoms range from crazy RASHES to DIGESTIVE DISTURBANCES to RESPIRATORY PROBLEMS to BLOOD PROBLEMS to NEUROLOGICAL PROBLEMS to inflammation in weird parts of my body (like my EYEBALL, for example) to being insanely tired to all out ORGANS GOING OFFLINE (not even sure how to describe what happened here…at the time, nobody else did either). Anyway, it’s a long story. But the links (in all caps) go back to the past.
Lately though, things have escalated a lot. First, I got diagnosed with a BLEEDING ULCER. Then, I started to have these crazy rashes all over my body. They’re super itchy. And they pretty much come and go all the time. I’ve had them for a few months now. Sometimes they get really intense. The thing that keeps coming up with all these weird symptoms and the one thing that they all have in common is that they are all complications of LUPUS. The word lupus really freaks people out. Basically, it means that your immune system can’t tell the difference between your own tissue and foreign cells. So it attacks normal tissue in your body. It can happen anywhere. I’ve pretty much had a gut feeling that that’s what is wrong with me since about six months after my TOXIC EXPOSURE. You just know. But whenever I would bring it up, I would get blitzkreiged with all this negativity. NO!! That’s not what you have. It’s all in your head. Are you sure? Take it back! It’s not true!
I get it. Nobody wants me to have lupus. Truth be told, I don’t want to have it either. Having lupus is bad enough. But getting diagnosed with lupus is almost as bad as just having lupus. It’s a total mind f&ck. I’m not kidding. People think you’re crazy when you say that. Which is part of why it’s so messed up. People who don’t know start to think you’re crazy. But it’s actually a real thing. My doctor even told me about it.
This book talks a lot about it too. It’s the definitive book on lupus written by a guy who specializes in it. Basically, it’s a really hard to diagnose disease. There’s a lot of far ranging symptoms that can be caused by a lot of things. So people go around in a limbo for years until it becomes obvious what it is. Meanwhile, you keep finding yourself in messed up situations. Because nobody around really understands how sick you are. Going to the doctor involves getting passed around to all these specialists who do all kinds of tests. And let me tell you, they aren’t cheap. Not at all. And in the end, nobody really knows anything. So it really starts to feel like a dead end after a while. Which is why I’ve been throwing a tantrum about NOT WANTING TO GO TO THE DOCTOR. Honestly, I’m still figuring out what I want to do about it. Right now, it’s just kind of this spector that’s casting a shadow over me.
The word lupus means wolf in latin. I guess the disease was named that because most people get diagnosed when they start getting these crazy rashes that make them look wolf-like. It feels more glamorous to me to think of it like I’m turning into a werewolf when it happens. Somehow more poetic than feeling like you have some weird disease. I mean after all, all the best super heroes are weird mutants that turn into werewolves at night. Right?