I got the loop

It's crazy because I'm going to type something that I've never typed before. I've said it outloud a few times, but there is something about the permanence of the written word that is different for me.

I have lupus.

I don't talk about it a lot...and normally when I do, it's as a joke, because, for me, laughing about the things that are not so great in life is simply the way I cope or deal with things. As the Barenaked Ladies might say, "I'm the kind of guy who laughs at a funeral/can't understand what I mean, well, you soon will..."

If you don't know what lupus is, it's an autoimmune disease that attacks the joints. Basically my body is attacking itself. They don't know what causes it, though they suspect it's either environmental or genetic. And there is no cure. Lupus, also known as "systemic lupus erythematosus", can cause rheumetoid arthritis, hair loss, rashes, fatigue, and can make you lactose intolerant. I'm in pain a lot...but it's not immense pain, generally, and it doesn't bother me often. Lately, however, both of my knees have been giving me some serious problems - it's called a "flare up". I haven't gotten used to them yet - I don't know if I ever will. I will live with this for the rest of my life. It's not fatal as long as you take care of your body. People use medications to "control" it, but a lot of these meds, I've read, cause more harm than good. I use vitamins and some over-the-counter meds only when I have flare ups, but since I've been watching my diet, my problems have subsided pretty dramatically. I cannot pin point when flare ups happen, but usually it's stress-related. Ironically enough, I've been pretty stressed lately...

What makes this situation even more fun is the fact that my job is extremely active. I'm always on my feet, always moving around, which is doing a number on my knees. I can't just sit and rest them throughout the day. Being in the water is nice (Can't wait for my snorkel tomorrow!), it feels good to be in the water - takes the pressure off of my joints. My knees are so swollen and stiff...the pain is only a little bit worse than usual, but the fact that I can't really bend my knees is troubling. On Friday, I took a nap after the kids left camp at 2 PM (Fatigue is one thing I'm constantly dealing with as well). I slept til 6 PM, but literally could not physically get out of bed until well after 9 PM. It was pretty terrifying. The reality hit me that one day I could wake up and not be able to move at all, maybe never again. I'm a super active person, I love hiking and dancing and love to play sports when I can, so it's pretty difficult for me to accept the fact that this is going to happen to me. I want to do as much as I can NOW when my body is still relatively young and resiliant.

I'm not going to roll over and die, of course. I'm not going to let the fact that I have this disease control my life. I haven't yet. It's been over a year now since I was diagnosed. I'm adjusting to the constant joint pain, I'm adjusting to the significant hair loss (luckily I was blessed with super thick hair, so now it just looks NORMAL), I can cover up rashes, and luckily there are so many soy and rice milk products out there that satisfy my craving for dairy products. Living with it isn't so bad as long as I live a healthy, carefree lifestyle...but good luck in this day and age to do THAT.

Admittedly, I do worry about some things about my future with this disease. I worry about not being able to chase after my future children...that I will be stuck in a wheelchair and have to have my future husband push me around like an invalid...when my mind is 100% sharp (OK well...99%). I worry about never being able to dance again. I worry about never being able to hike up a mountain to see a sunset. I worry about not being able to coach my kids' T-ball teams. I know it all seems silly, but I'm an independent, active free-spirited person and I don't want to be trapped inside this broken body. It's terrifying.

As much as I get scared about it sometimes, essentially I have to laugh about it. One of my friends here has epilepsy and we joke about having these diseases. He always says he's got the "Ep", so, in turn, I got the loop. We laugh about it, because what else CAN you do?

I came across a list of a few celebrities that have lupus, I was pretty surprised:
Stone Cold Steve Austin, Michael Jackson, Seal, Louisa May Alcott, Flannery O'Connor and Sophie Howard

Anyway, if you read this, I'm not asking for a pity party, though if you want to give me a couple of microbrews, I won't argue. I guess I just wanted to get something off my chest. I don't talk about it often, in fact only a few people in my life even know this about me, and sometimes it's just nice for people to understand once in awhile...