Hot and bothered (Part 21)

While I never told the editors who hired me at the Ottawa Citizen that I had a serious chronic illness, I confessed my secret to the doctor performing the employer-mandated medical exam.

I had to. Otherwise, my blood would betray me.

A routine white blood cell count (WBC) would reveal I suffered from neutropenia and leukopenia — chronically low numbers of white blood cells which left me highly susceptible to infection. Lupus often attacks and destroys these disease fighting, workhorses of the immune system. A normal WBC is between 4,500 and 11,000, mine hovers around 1,800.

If the doctor requested more sophisticated tests, she might also have seen extremely high levels of anti-double-stranded DNA antibodies, which suggests more serious lupus, such as lupus nephritis or kidney lupus.

As far as I knew, my kidneys were not involved, which was a comfort to me. Unchecked, lupus nephritis can lead to total kidney failure and be the dividing line between serious and devastating sickness. While I already knew I could handle a life marked by joint, heart and lung inflammation, I wasn’t sure what more I could endure.

That day in the office, the doctor asked how lupus impacted me on the job, and I told her the truth. I never called in sick.

Whatever she found in my blood, she told the company I was fit to work. So I began my new job full of hope.

My so-called stress-free life

My new life as a science writer was like skating on smooth ice. My assignments, a mix of news and features, took place between 9 and 5. I mostly knew what to expect. It made general assignment at the Star look like the roller derby.

I wrote about rather boring staffing updates at local science councils and the passion projects of the city’s many researchers. I learned quickly that to get on the front page, I had to write about new developments in science that made something higher, faster, or weirder. Or any kind of animal sex.

About a year in, I wrote a feature about how a team of Telesat engineers “shaked and baked” the newly launched Anik E2 satellite, which carried virtually all of Canada’s television broadcast traffic, to jerk it out of an unplanned slumber. I won my first of three Canadian Science Writers Awards for that feature.

The Citizen newsroom was filled with female interns, editors and reporters. We went shopping and planned dinner parties, instead of hanging out at the nearest bar. My boyfriend worked every night until 11 p.m. and travelled often. Ironically and unfortunately, I felt like I was single.

My health was fine at first, with the same ebb and flow I’d experienced at the Star. A mild flare would attack my joints before and during menstruation and then there was a lull afterward when the inflammation lifted and I could play squash and go for long walks. I signed up for yoga to try to improve my fractured breathing, a holdover from the scarring after the pleural effusion I’d developed five years earlier.I was hopeful my life with lupus had turned a corner.

But something strange started to happen. (How many stories about autoimmune disease begin like this?)

I seemed to be getting sunburned at work.

After being in the office just a few hours, my face flushed, until it was bright red and hot to touch. I looked like I’d spent too long at the beach when all I’d been sitting head down in front of my computer. I’d make repeated trips to the bathroom to splash cold water on my face. Eventually, I started bringing a spray bottle of water to work to soothe the burning.

My work mates inquired about my cherry red face. All I could do was shrug.

People with lupus are highly photosensitive. UVA and UVB rays from the sun can trigger a serious lupus flare. But I was sitting in an office. Only the computer screen and the fluorescent lights hanging in rows from the ceiling provided any light. While I almost never left the office, it seemed unlikely the computer glare or the overhead lights caused the strange burn.

The fatigue that had been intermittent became permanent; the inflammation that followed a monthly rhythm parked in the connective tissue of my joints. The inflammation became so pronounced that I couldn’t turn the lid on a juice bottle and had to ask my desk mates for help. They made fun of me for being so weak. A joint in my right foot was so inflamed that I each step was painful.

I skipped yoga and stopped walking. At night, waiting for my boyfriend to come home after the nightly newscast, I’d nap on the couch. Later, I couldn’t fall asleep because of the pain. Somewhere, I’d lost my equilibrium and then my hope.

I told my new rheumatologist at the Ottawa Hospital about my flushing face and perpetually sore joints, but he kept my prednisone at 2.5 mg, which was as low as it had been since I started corticosteroid five years earlier. I worried it wasn’t enough. “I’m fine, I’m fine, I’m fine,” was the mantra that replaced my transcendental meditation mantra.

Every six weeks, I had my blood drawn and gave a urine sample so he could scrutinize the results. He never told me he was watching certain disease markers slowly worsen, especially in my urine. He was old-fashioned and hoarded information. Yet, I anticipated bad news.My blood pressure skyrocketed at each appointment while I waited for him to pass judgement.

Wait. What?

On a February day 24 years ago, I sat in my rheumatologist’s office. I was feeling pretty good and had just played a game of squash the night before with a girlfriend.

He sifted through the papers that held my latest results.

“You have three plus protein in your urine,” he told me. “That means your kidneys are spilling a lot of protein.”

Wait. What?

“They aren’t functioning properly.”

What?

“We have to do a biopsy.”

Even the most skilled interviewer can’t come up with smart questions at a moment like this. I was blindsided. I didn’t ask if I was going to be OK. Or if my kidneys were failing? Or if I was supposed to go back to work? I wasn’t even sure what a biopsy was.

He told me he would confer with a nephrologist and set up a biopsy as soon as possible. The inflammation might be mild. Or it could also be diffuse, and aggressive. The results would dictate a treatment plan.

I suddenly felt so very tired. Whatever energy I had mustered to get through my work days seemed to woosh out of me, like a burst balloon. Sitting in the chair, I took stock. I felt deflated. How would I get through this, if the biopsy results were bad?

Numb, I left the hospital  and got in my car. I had no idea what to do, where to go. So I did what I always did; drove to the Ottawa Citizen building and got to work.

 

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