I hadn’t intended my inaugural post to include anything about lupus but such is life. I put off some medical stuff during the last two years, and I’ve got to deal with it now.
A fellow lupus patient once told me that since I could no longer work in the real world, going to doctors was my only job for the rest of my life. To her, if I approached it that way, it would be more palatable. I thought then as I do now — how sad.
I can barely bring myself to write about having an autoimmune disease some days for the sense of self-pity it implies. I don’t want others to think I focus on the problem rather than focus on being well.
I have been in remission for the most part since my husband and I moved closer to his work over eight years ago. I was gradually improving before that time just being away from my lab job and its stress, ultra-violet lights, and bench work. I was fortunate that I could work for my husband at home and rest often. Still, I see multiple doctors every year, even if just for an annual exam. I always come away tired, sometimes exhausted, due to the lab-like environment. If some new symptom crops up, and that happens now and then, I often find myself with a specialist and those doctors can quickly take over my life and send me into a flare with the conviction that something awful is wrong.
I walked away from an annual check-up yesterday with instructions to go to a specialist. In all likelihood, everything is fine but my reaction was to fall into an immediate depression at what might be to come.
I am not afraid of being ill. I am afraid of being treated like I am ill, of being dragged through a dozen tests, appointments every two weeks, and vague pronouncements of “it might be x, but we should check for y.” In the end, the likely outcome will be as it has been in the past, another symptom of lupus that can’t be cured but only managed and is not life threatening but annoying and painful. Even more likely, the doctor will throw up her hands and declare the symptom is probably caused by the lupus and will fade away after a few weeks or months. Meanwhile, for x months, I’ve been prodded, drained of many vials of blood, and forced to sit in rooms flooded with the UV light that makes me sick while they tell me “well, something is making you sick!” Yes, YOU ARE!
Faced with that eventuality, I went shopping.
I’m not big on shopping, mind you. I hate shopping. It puts me under more ugly lights and surrounds me with perfumes. I don’t even care that much about shoes but that’s what I did. I went and looked at shoes. Loafers, for God’s sake! I bought a pair of boat shoes solely in response to the pressure and guilt from the woman that brought me five pairs of shoes to try. I wouldn’t have purchased shoes at all if I hadn’t been thinking about that damn specialist. I’d much rather have a Vanishing Point pen from Goulet Pens.* Already the idea of wasting days of my life in doctors’ offices has me behaving in a way I don’t like to behave, buying things I don’t want from people I don’t need to please.
This is supposed to be my job? Where’s the part where I get paid? Where’s the reward for work well done? I’m not saying my husband’s job is Heaven but somehow paying someone else to make me sicker and more anxious than I was before I spent three hours in her office is counter-intuitive at best. It may be work but it sure as hell isn’t a job.
Is it any wonder that patients with chronic illnesses have so many tangential issues besides their original diagnoses? Between the drugs that damage parts of us while supposedly keeping us alive and the doctors that drive us batty trying to “help” us, we become people we were never meant to be. And let’s be honest, some of those doctors see dollar signs when they see we are well-insured.
I’m not meant to be a lab rat or a pin cushion or a zombie wandering from one UV-flooded room to another or someone’s down-payment on a new Benz. My life’s work will not be a disease. I am meant to be writing, playing with my granddaughter, fishing with my husband at dawn and dusk, or hanging out with my kids on the lake. That my life’s work!
On that note, let’s hope this will be the last you will ever read about lupus on this blog, God willin’ and the crick don’t rise.
*Not affiliated with Goulet Pens, just hopelessly addicted to their products and outstanding service.