Jennifer Clare Burke chronicles her struggle with lupus, and the challenge to keep on keepin' on.
Lupus, as she told me, is an inflammatory condition that can’t be cured, but the symptoms can be managed—including the joint pain, crippling fatigue and unrelenting stiffness that had brought me to her office. (Click here for some quick facts about lupus.)
It was a helpful answer. One that nonetheless neglected to predict the number of in-patient stays I have since encountered, or the intensity of the burning pain that has sometimes sent me shrieking and rolling on the cold kitchen floor.
My doctor said something else that day that has stuck with me: “You’ll find a way, just as you do with everything else.” Well—sort of. I have somewhat successfully managed my incurable condition for 14 years now. But there hasn’t been any one way. Rather, I’ve had to keep finding ways, plural, as each new curveball from disease or complications has forced multiple, ever-changing solutions to living on the daily edge of crisis. I didn’t know, precisely, that a month and a half ago I would wind up with another in- patient notch on my IV tube—yet I have lived for more than a decade constantly anticipating that something will go kapow! I keep on with life, doing all the things people do. Except for those occasional moments when I find myself in a panicked, agitated state because I’ve made the mistake of thinking about the future too hard while resting too little. At such times, worry and physical discomfort come together, leaving me with the strong impulse to simply wander away from myself.
But back to my colonoscopy, which had been prompted by a particularly bad three-week-long bout of irritable bowel syndrome that prevented me from keeping food inside my body for more than a few minutes. I came out of anesthesia after the procedure slowly and without grace. I assume my then-90-something-pound weight had much to do with that. I vaguely remember sipping juice to elevate my sugar and talking; friends and family later informed me that what I actually said was, “The guy next door is farting, and it’s loooooud,” at which point I was hushed, as apparently I was guilty of the same crime. Then I undressed completely, casting the hospital gown aside, and put on my sneakers. I was ready to go home now!
I was helped with the rest of my clothing at that point, so an embarrassing public spectacle was avoided—but I was still trashed. Fortunately, I didn’t have to drive myself home, where, thinking my day finally over, I heated a frozen TV dinner to eat and literally fell into bed. Within an hour, I barfed the juice from the hospital as well as a distinct portion of the dinner. Now the anesthesia was fully worn off, and a migraine pounded unbearably. Not a headache—I know nothing of these mildly irritating headaches other people describe. I’m talking about a migraine.
I went to the ER. I explained to them that the last 24 hours had been an exercise in How to Trigger a Barfing Migraine. The emergency docs gave me fluid and drugs: Zofran (for nausea) and Dilaudid (for pain). I was in serious enough discomfort that I varied from my usual self-restraint and asked for more of the narcotic, pushing aside the knowledge from previous experience that it would likely leave me feeling dopey and hung over. For the moment, I just needed to enjoy the absence of pain. I went home.
I slept off the migraine treatment. Roughly six hours later, I woke up puking in strangling agony. The rest of that frozen meal paid me a visit: completely undigested and without bile. I knew that was bad. My insides weren’t functioning.
I work as an independent contractor—writing, mostly, plus other gigs—because I’ve learned over the years that there’s no way for me to be sick on someone else’s schedule. Working a strict 9-to-5 isn’t sustainable when those are the hours when medical specialists, physical therapists and infusion suites need to see you.
On good days—in good months—I take my daily meds, my weekly shots and try to keep up with my physical therapy workouts at the gym or at least at home. In July 2011, one of my docs had me commit to a strict gluten-free, dairy-free diet that reduced my IBS and other inflammatory issues. I keep up with blood work, and I try to keep up with whatever new problems arise. So far in 2012, I’ve dealt with a sinus scope after too many bloody noses during a sinus infection; some highly inconvenient scleritis incidents; and treatments to reduce the swelling of a chronically angry knee. I sleep much more than my peers, and my need for rest over-determines my life. I keep a towel in the car to throw over the exposed skin on my left side: I don’t want the sun hitting my neck, shoulder, arm or hand while I’m driving to avoid the rash, burn and resulting feeling of ick.
Then there are the sick times. In 2000, the pain in my legs was unbearable, so I reluctantly accepted a walker. In the years since then, I’ve occasionally used it during some rough times, but the need has lessened as my knowledge of proper self-care has increased. Just this year, I had to turn my car around on the road within 10 minutes of leaving home because scleritis hit so severely in one eye that I couldn’t properly drive; the tearing and the intensity of the pain forced the eye shut. It was a bizarre phone call to my boss to explain that suddenly, my eye didn’t work. Because I’m on treatment that’s immunosuppressive, it’s not uncommon that I take longer to fight infections; currently, I’ve been on treatment for an infection since May 4, which I hope I can finally conclude when I see my doc on Sept. 26.
I am enormously privileged to receive a level of medical care that keeps me (mostly) functional in the midst of serious health incidents and ongoing daily disease. I pay $445 a month for my health insurance premium. I have a $50 copay for my office visits; there is the deductible per year, out-of-network items and items not covered at all, such as visits with a pain specialist for $250 a pop. It adds up fast, yet I am absolutely blessed compared to many Americans who have medical problems that are far more severe, but who lack health insurance—or the funds to cover medical costs, sometimes even with insurance.
This sick life is precisely why my husband and I live with my 85-year-old mother and are likely to until we’re more financially stable. The living arrangement, while sometimes challenging, allows all three of us to conserve costs and to care conveniently for her needs. These savings have allowed me to continue repaying my student loans without lateness or default and to repay completely my private student loans; to pay for my health insurance premiums and other medical costs; and to put money aside in a disability fund for periods of disease-induced joblessness.
When people suggest that I should “live a little,” I find this joyful attitude—which works in their healthy lives—laughably naive. They need a lesson in Sickie Math: the common denominator is being a little more screwed than my (mostly) healthy peers can readily grasp, those peers who can more or less count on being able to rise from bed the next day to be good employees. I possess none of that reliability from my body, so I possess none of that reliability in my finances. I act accordingly.
Friday the 13th, still: I was now at the hospital for the third time today, a mustard yellow barf bin readily placed in my waiting, spastic hand by a hospital volunteer. A tech led me to a familiar room made of curtains, leaving me with the instruction to have my insurance card and driver’s license out, which I already did.
I took off my clothes to step into a medical gown, and two things happened simultaneously: first, a nurse entered with a tray of IV goodies, from tubing to blood sample vials, and second, a wave of retching grabbed me. I had already placed the bin strategically on the bed. My aim, well practiced by now, nailed the target. Solid minutes of heaves, whistling breaths and thick splatter elapsed as the nurse kept her back to me. I was mostly standing, sort of, on my own, tolerating what my body did. She busied herself with putting patient information stickers on vials and entering data into a computer. Finally, I was left somehow dry-mouthed but also string-drooling into the bin, my fists on either side, supporting my weight. My face reddened with the heat of exertion, tears pulsing from the strain. As if nothing had happened, the nurse turned to me cheerfully and kept strict eye contact: “Would you like some help with that gown?” The gown was still folded neatly on the bed. I appreciated the polite concession to my dignity, even as I wondered what she thought of the pathetic naked woman, dressed only in sneakers and cut-off running socks, unable to control the body’s grotesque play, bare tits wobbling freely over a bin of regurgitated food.
The 2014 Philadelphia Spring Guide