What you don't see here is my fever of 99.2, my swollen jaw that prevents me from having a descent dinner, a swollen knee that keeps me off the floor with the little kids and from moving more than a snails pace around the house. You don't see the upset stomach I've had off and on for literally years that has stumped all the GI doctors and annoyed me to no end. Or the costalchondritis that causes swelling of the connective tissue between my rib cages making it painful to breathe, lay down, wear a bra, twist my torso, bed over or even sleep (because I can't lay down without being in pain).You don't see the lumpy bumpy scarred abdomen from four major surgeries. What you aren't seeing is that I have lupus.
I was diagnosed with lupus, formally Systemic Lupus Erythematosis, on October 13, 1983. I was eleven years old, it was Columbus Day, cold fall weather, and I felt horrible. Like I had the worst flu ever. I didn't want to eat or do anything, just sleep. I couldn't roll over if I laid down-- my joints were so swollen and painful. My fingers didn't-- couldn't make a fist. My knees didn't bend to allow me to sit criss-cross. My mouth barely opened and, odd of them all, my tongue and lips would swell. No rash, no noticeable fevers. But I left that appointment where I saw a lot of doctors in the room at once (hindsight: they were residents) with a single prescription for prednisone. A day later, I swear it was that quick, I was better. But that was a tease because the year before had been a slow decline and the thirty years ahead would be nothing short of a really rough ride.
That's my dad and me in my hospital room about a week after that initial diagnosis, if I remember right. We are next to a big get well card that the whole sixth grade class had made for me.
So I have lupus. I'm still alive, right? Yea... But (and you saw the caveat coming didn't you?)... some "life." Living with lupus is interesting. Some people have really very tough battles with kidney failure, nervous system involvement, pericarditis, aseptic necrosis of joints from the steroids (which, by the way, can happen from so little as a few DAYS of use. I've been taking them basically for 30 YEARS.), osteoporosis at a very young age (in your 30's). Some people get away with pretty much no symptoms aside from the occasional joint pain. Others struggle until their immune system finally does in every organ needed and they die. Yes, people with lupus die, and myself and my friends with lupus live every day with that fear that the one day of feeling like crap is going to lead to that final downward spiral to their grave. It's a looming sense of "the end is near" and it puts the saying "carpe diem" into a bit more perspective.
Lupus in Latin means wolf and the disease is called lupus after the rash that many people (not me, thank you God) get which looks like the bite of a wolf. The wolf has become a symbol of sorts to many people with lupus. For starters, they are strong, and lord knows to get through the day (get through MY day?!) takes strength. The rely on each other-- no way can I do this alone. I have my pack of friends and fellow "lupies" who I lean on. My village who comes to my rescue. Wolves are nocturnal.... now this is a bit of a sore subject with me because I love to be outside. I love the beach, the sun and the fresh air, but I am sensitive to the sun and it's only gotten worse over the years. When I am in the sun without protection of SPF 1,000,000, a hat, long sleeves, etc, I wake the next morning feeling like I've been hit by a truck. I am like a wolf in that the only time I can go out is when the sun is low in the sky or the moon is out. I have a friend who has recently been battling a horrid flare of her lupus and she uses the hashtag #strongerthanawolf a lot in her social media. Right now, I feel like if I were a wolf, the pack would leave me behind because I'm the one limping along. (You can read more of her blog at www.highheelsandtrainingwheels.com and you can follow her on Facebook, too. I'm not that fancy... yet!)
I am patiently dealing with my lupus on a day by day basis. It comes into play not in literally everything I do each day but much of what I do and has come to be an unconscious routine. Apply the sunscreen. Take my meds. Take my vitamins. Get to bed at a reasonable hour. Delegate and plan and be organized so I don't get stressed out because the stress with flare up the lupus. I take each day as it comes (for the most part) because at a moment's notice, all hell could break out and my energy level drain completely, or my jaw swell, or my thumbs swell, or the whole thing spiral out of control. I know I have a serious illness. Of course it scares the shit out of me. But I'll be damned if I'm going to not enjoy the time I have here.