Oh, how I wish we Lupies, Lupans, Lupusonians, whatever you want to label us...(anything but lupus victim!) had clear-cut symptoms that showed up instantly on blood tests, that the appropriate drugs would be prescribed that would work for all of us without nasty side-effects, and that family and friends would somehow miraculously understand and support us.
But the more I interact with others in sharing about our disease, the more I find we are incredibly complex creatures dealing with an incredibly complex disease.
Some of us have headaches, unrelenting and unexplained. Some get headaches only after taking a certain medication. I had joint pain as one of my first symptoms; I know another woman who suddenly had complete kidney shut-down. That was her first and only clue. Some can take cytoxan, imuran and plaquenil; others get violently ill or have other bad side-effects. And some of us have rheumatologists who know what they're dealing with and are very attentive to our needs; others of us come away from yet another doctor who suggests (again) it's all in our pretty little heads.
Lupus is the most frustrating, irritating, inconvenient, painful, psyche-damaging, depressing, deadly disease I can think of. We get no respect because, as we are told constantly, "You don't look sick." Of course we don't look sick. Sick people are supposed to be thin, gaunt, and hobbling around with a death mask on. On the other hand, and this is my experience, shared by some but not all, we are -- ahem -- fluffy. Overweight because of large doses of Prednisone. Retaining water like crazy. Our cheeks look like chipmunks. So how could we be so sick, when we're so fat? I used to add to my explaination about lupus, "And I'm overweight because of the medications I'm on." But that doesn't impress some people at all. They still can't see it.
If we had a broken arm, our arm would be in a cast, and people would offer sympathies and help with carrying packages, etc. Or if we're in a wheelchair, they assume we're somehow lame and flock to our sides, providing any help they can give.
But let me park in a handicapped parking spot, put the parking permit on my windshield, and step out of my car, and some busy-body will frown and snap: "You're not handicapped. You shouldn't be parking there." I always want to give them a long explanation, but I've resorted to my standard answer: "There are all kinds of handicaps. Ignorance is one of them."
Day by day, we cope as best we can. Some days are better than others. Right now, I'm in remission, or at least my doctor said the last time I went in to see him. But I know lupus is capable of launching a sneak attack at any moment, leaving me back where I started from -- or even worse.
But I can't let that threat hang over my head. I have a standard reply to that possibility, too, when anybody asks. "I can go outside and get hit by a truck, too."
And couldn't we all. One insensitive person once threw this at me: "Lupus is fatal, isn't it?"
I smiled sweetly and said, "Well, life is fatal."
Today, I'm okay. And tomorrow isn't here yet. Whatever lupus brings tomorrow, I can deal with it. I've had plenty of practice.