Today, I was told that if I didn’t drink diet soda, I’d not have Lupus. I was told that if I just ate protein instead, I wouldn’t need the caffeine. I was asked if I ate the bananas because then I wouldn’t have a cramp in my left calf that has been hobbling me for days. I have been told that if I weren’t . . . I wouldn’t . . . all. my. life.
The problem with this thinking is that there are some things that we just don’t have control over. Autoimmune diseases have “no known etiology” – in medical terms that means “no one knows what causes that”. Skinny, healthy, athletic people get lupus. Women of childbearing years in the prime of their lives get lupus. Fat people get lupus. Old guys get lupus, though the ratio of women to men with lupus is 10:1, so maybe if I weren’t a woman, I wouldn’t. . .
Wolves see the weak in a herd and stalk them. Often, the victim doesn’t know they’re even there until they are being chased and caught and the life drains out of their eyes. One day, you’re grazing away, being careful about where and what you’re eating and then bam! you’re running, running for your life, the lungs you’ve depended upon now damaged and not carrying you as fast as you need to go, you’re energy reserves being depleted so much faster than you can make them up. Without help and support from the herd or from a hunter, you’re toast – wolf supper. Done.
I’ve survived a wolf attack before. It came for me when my child was only three months old. It was insidious – a little nausea in the sun, a rash on my face. A strange pain at the base of my lungs when I breathed deeply. An inability to do anything with a 5 and 7 combination mathematically without pencil and paper or a calculator. And fatigue – deep, grinding, make you pass out and sleep three hours at a shot, walk with your eyes closed, feel-it-in-the-marrow-of-your-bones fatigue. Fatigue so engulfing and complete that your body forces you to cry when you can’t stop and sleep. Five months after the first inkling of something wrong, I was given three and a half months to live.
I studied everything I could about Systemic Lupus Erythmatosis. I had to, because every time my lungs shut down and I couldn’t breathe, the ER docs asked me “what makes you think you have Lupus?” Like I had to do their homework for them. Every time, I patiently explained all my markers and positive test results. Every time, I wanted to scream “read my freaking chart!!!” Every time, all I wanted was to be able to breathe. I’ll do anything, just help me breathe.
I survived that bout. Although the treatment gave me cancer. I got through that, too, now sans bladder and everything around it. I pee through a straw now, and standing up. Funny, my husband now chooses to sit when he pees. Don’t know why, but he just does.
Now, 28 years after the first diagnosis of Lupus, and 16 years after the cancer diagnosis, I’m back at the beginning. Numbers are up, scarring in the lungs that wasn’t there before. Can’t breathe well, and the fatigue is becoming overwhelming again. Two days ago, panic gripped me. Yesterday, my C-reactive Protein was more that double what it was before after ten days of steroids to drive it down. I’m still fighting bouts of tears at what I suspect may be before me. But I have to keep working at my job, keep moving forward. I’m scared. I feel alone, though there are friends and loved ones standing at the ready to support me. I feel alone, because none of them know – really know.
27 years ago, I asked the doctor what I did wrong that caused me to have this terrible illness. Was it because I was fat? Genetics? What? He, in all his kindness and caring, assured me that I did nothing – nothing – nothing to cause me to have Lupus. It. just. happened.
But he told me something else. He told me I was a miracle for surviving it in the first place. That the treatment was experimental and actually worked. (I was the third they tried it on. The other two died.) And then he said, “I don’t know if we can save you if it happens again.”
Tonight, as I try to rest and sleep has fled from my troubled mind, I work to convince myself that there are new advances in medicine. New treatments. New things to try. But I know that when I see the new rheumatologist soon, I’ll have to answer the same question, “why do you think you have Lupus?” Will I get someone who will understand me? Who will believe me? I’m old, I’m fat, I drink diet soda. Will they want to wait? Will they be aggressive in the treatment, or will they wait until I’m a shell of myself before trying to forestall the end? Do I need to update my Advance Directive, fill out a POLST form and make my arrangements? Update the will? I did that when I was 31. Maybe I should check that out. What if I go and they tell me I’m fine? I’m NOT fine. I can feel it in my bones. But if they say I’m fine and they send me home, how long to I have to be NOT fine? Until “it happens again” and they can’t save me?
And I tell this to you, dear blog, because I’m pretty sure no one reads you but me, and I don’t want to worry the fam. I can’t say all this to them. They need me to tell them I’ll be fine. That I am fine. That “God don’t want me and the devil’s running scared” so I’ll be around for awhile – even if I think, in the pit of my gut – that I’m lying. And if I speak the real that I feel, will they think I’m a hysterical woman? That I’m overly dramatic? So, dear blog, you get to hear it. I have to go out there and keep that stiff upper lip, shoulder the load, move forward. Really, though, I don’t know if I can when the fear hits.
I look up from where I graze, checking the woods along the edge of the meadow. I can see the yellow eyes watching me. I’m poised, ready to run. But it’s not coming. Yet. How long can I stand here with my family in this one spot in time before it comes for me? I won’t know until it’s halfway here.