A Short History of a Long Illness

A faithful reader from far across the sea has respectfully requested today that I pen some thoughts and share what is known as "experience, strength, and hope" in terms of having lupus and fibromyalgia, how it affects my life, and how I deal with it on a daily basis. I agreed reluctantly. I don't like to focus much on the physical challenges that are in my life daily and sometimes cause me to have to take things an hour or a minute at a time. I visit the doctor on a regular basis--my rheumatologist three times a year, my primary care physician every two to three months, and my alternative health care worker, an acupuncturist and specialist in Chinese medicine, twice a month.

I have had the unfortunate experience of going to the ER for something lupus-y just about every year, sometimes more, in particular if I get the flu, which sets off a sort of bodily chain reaction. And yet, like the Eveready bunny, I keep going. I don’t like to make my illness the center of my life or the locus of my existence. I do, however, have to live with it and know there are others out there who deal with it, too.

I was diagnosed conclusively with lupus in 1995 (after a couple of years when the illness was miserably developing) when a facial rash biopsy showed lupus antibodies in my deeper skin layers. For those of you not in the know, lupus is an autoimmune disorder and its primary strangeness is that the body, mysteriously and for reasons unknown, begins to produce antibodies to its own DNA and the immune system goes haywire, attacking body tissue as if they were an infection to be gotten rid of. These days, lupus affects my kidneys in particular, and other body systems in general, depending on its blind whim. During what I jokingly call my "tune-up"--blood and urine tests every three to four months--it is routinely observed that my kidneys are always stressed now, always showing spills of either blood and protein, or both to greater and lesser degrees, after years of being the target of numerous flare-ups. Having lived with this illness as long as I have, I am grateful that today it is not more than that, for now. There is still the ever-present danger that I could develop kidney failure, and I simply live with that knowledge, hoping it never happens. What else can a person do, especially someone like me, who had a long coming-to-terms with the fact that my body is touched by something I can't get rid of? It's like learning to live with a tiger in your household: you can either hide in a closet, cowering in fear about what the tiger might do, or you can find a way to make peace with it.

Most months, as my menstrual cycle clocks in (I am as regular at 48 with it as I was at 28), I experience a moderate to severe flare. This involves, generally, fatigue (a definite flu-like feeling, like the worst flu you've ever had), a brightening of the classic "butterfly" facial rash, very nasty joint pain, sores on my scalp (at least I have all my hair now--a long time ago, that wasn't the case), and sores on the roof of my mouth so severe that, recently, a dental hygienist recently wondered how I had gotten second-degree burns on my soft palate. There are systemic consequences to the monthly flare that I do my best never to think about anymore, even though I accept it as a reality of my life. Mine is a disability not always apparent to people due to its capricious nature, but it is still very much there--and very much documented in my years of blood and lab work.

Both lupus and fibromyalgia are characterized by periods of flare and quiescence, and every case is individual in terms of how that will be. In my case, to paraphrase Flannery O'Connor, when lupus comes forth, I go in, and when it leaves, I go forth.
If I am in a dance class, I sit, take breaks, I don't do everything, or I hang onto the barre for dear life. My troupe leader is accustomed to working with people who have limitations like mine, and we have been known to adapt performances (such as not having me do the sword dance) when I am unwell. There are times when I simply have to miss my classes or a performance and stay home in bed until I feel better. That's life, no matter how much I'd love to change it. In grad school, at least I could sit down--though what no one knew was that I would rest literally all day before getting on the bus for my classes, which took place twice a week in the afternoon and evening (often I do that when anticipating an exercise class today, too). Getting through graduate school took me much longer than many of my peers in the MFA program--and I was unable to take every class I really wanted to take and do all that I dreamed of, due to the fact that a lot of it was just too much for my body to take. Still, my MFA program helped me know that I could still write--that was the one thing I was left no matter how bad I felt or how little I could sometimes accomplish--even if things took me longer than most people. It's when I learned that life is not a race (besides, the finish line for life isn't exactly a pleasant place to be, so why rush to get there so fast?)

Where lupus is an invader, fibromyalgia is a stealth artist. A fibromyalgia attack (which I experience at least once a week, if not more) goes thusly: I wake up feeling as if I have had no sleep, even if nine hours have passed. Most people know that feeling of severe muscle achiness from not sleeping. Fibromyalgia is that achiness multiplied by ten thousand. It's as if the body has lost its ability to really go to sleep, with all the resultant problems of sleeplessness, including fatigue so profound it feels as if one's bones are made of lead. When I began to go to my current rheumatologist seven years ago, he told me that exercise was considered a primary treatment for fibromyalgia and outlined some things I could do--yoga being one thing. I told him that the one thing I did not want to do was get on pain medication, and he agreed that exercise might be a key to helping reduce my pain level. And so I began to walk a bit when I could.

In 2005, after using walking as my primary form of exercise, I began a yoga class and have remained with the same teacher, as she is extremely skilled at adapting the poses for me and is an overall great instructor. I often joke to myself that I have to use a series of pulleys and mirror tricks to do yoga--in reality, I use folded blankets, yoga bricks, and a yoga strap, and will often adapt the poses in the way my teacher has shown me (hard to describe here). It has helped a lot in learning how to get past the worst bodily pain, though some level of pain is always with me and I have simply learned to live with it.

I've come to a point in life where I have learned to say that lupus was a beautiful gift in a decidedly ugly package. I learned my mortality with it, something people even in my age group don't realize. We are not here forever. Yes, one day, lupus might play the trump card on me and I won't be here anymore--a reality I have been at peace with for a long time. I heard an old singer once interviewed--can't remember who he was--who joked that, every day, he picked up the paper and read the obits. If he wasn't in them, he figured it was a good day.

I know a dancer with AIDS who keeps dancing, even when he feels like he is dancing on the edge of a void threatening to take him anytime. I have a friend with brain cancer, in the terminal stages, her chemotherapy discontinued, who still makes plans for a solo dance next year, even when doctors have given her no hope for her life continuing beyond a few months. I have a friend in her late eighties who keeps writing despite the days she is tired of life and would rather join her husband in the world beyond this one.

What's the key to keeping going, even with the knowledge of my body's flight towards mortality--something that will eventually come to everyone? I don't know that answer. What I do know for myself is that some days I simply am with my illnesses, unable to read the cipher of my body, realizing I am not in control of the outcome, and hope that tomorrow's better. Some days, I am able to work on my book, two hours, as Flannery O'Connor did so long ago. Two hours is about it, most of the time. Some days I am able to get up and take a walk. And on some days, the very best days, I dance.

(the link today is to the National Lupus Foundation)