Category Archives: helpful advice

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. Continue reading

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Out of the frying pan (Part 20)

I’d like to torque my personal narrative and claim that I left my ‘dream job’ following an epiphany: journalism is not a cure for lupus.

Except, I wasn’t that astute.

These days, there are many books written for the chronically ill about how to scale back your dreams and still find career success. Despite Lupus, written by a former NBC producer, quit her job to control the constant flares of her illness, which eventually attacked her kidneys and arguably the most serious manifestation of lupus (a stage I didn’t yet have to worry about). The writer encouraged readers to work smart, or in bite-sized chunks, and sometimes not at all. Fabulupus (yes, that’s really the title), is filled with similar advice.

When I was a young reporter, there were no “self-help” books about how to manage your workload, ask for support from your employer, or even disclose an illness. And there was also no wise counsel from medical professionals.

Instead, my rheumatologist, one of the best in Toronto, fed my personal mythology that I thrived on stress. How else to explain that all of the blood tests to measure the severity of my disease activity were sky high, but I wasn’t defeated by the chronic fatigue, arthritis or the ripping pain of pericarditis (inflammation around the lining of the heart) or pleurisy (inflammation of the lining around my lungs)? Somehow stress gave me energy, or so his pep talk went.

Continue reading

Who’s afraid of the wolf? (Part 3)

If home is where the heart is, what about the hurt?

Would it follow me there, too?

Upon my return from university, I sat in my straight jacket of pain watching my parents take action.

My dad pulled out the plaid sofa bed in the basement so I could sleep upright by leaning on the back of the couch. He moved the TV close, pushed the shuffleboard out of the way.

My mom brought me warm towels to pack around my chest. When that didn’t ease the hurt, she wrapped her arms around me, trying to minimize the ripping pain that came with each breath.

They’d booked me an appointment for the following day with our family doctor, but I was without hope. After five doctors and 18 months, I already viewed the medical profession with doubt and disappointment.

But as I unspooled my story to our GP, he didn’t take his eyes off of me, or scrawl a prescription for sleeping pills. He put a stethoscope to my chest, probed by tender joints and then leaned close.

“I think you have systemic lupus,” he said.

I remember thinking, ‘Lupus, like a wolf? What an awful name for a disease.’ Continue reading