Tag Archives: rheumatologists

A preposterous picture of health

Oscillating flower petals. Dancing dots. A kaleidoscopic galaxy bursting in my field of vision. This was all new, and coincided with my hospitalization for a kidney biopsy.

There were concerns I might be having lupus-related mini-stroke so an MRI was ordered to look for a brain bleed. While waiting, the doctors let me out of the hospital for the weekend.

As an antidote to illness, we went house hunting.

While I needed fistfuls of drugs to beat back the inflammation gnawing on my kidneys I also needed somewhere better to live. I needed to not live above a drug dealer and his prostitute. I needed not to be disturbed by their frenetic negotiations over sex, money, drugs. I needed a safe cocoon where I could sleep through the night.

My better health seemed to depend on it.

When you have an illness that makes no sense, it becomes a fool’s pastime to look for connections and causes behind the descent to disease. At one time or another, I’ve sworn off gluten, corn, eggs, dairy, sunlight, stress, soy, red meat, all meat — and had my mercury fillings removed, to name a few fanciful attempts to feel better.

Back then, in hospital, I was extremely irritated to learn from a kidney biopsy that I had the most serious type of lupus nephritis; class IV, diffuse and proliferative. What was the cause? Rampant inflammation couldn’t have done that kind of damage overnight and must have been simmering for a while, right? Continue reading

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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

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

Heart burn (Part 15)

While dying of prostate cancer, New York Times book critic Anatole Broyard wrote about “the therapeutic value of style.”

In Intoxicated By My Illness, he observed: “It seems to me that every seriously ill person needs to develop a style for his illness. I think that only by insisting on your style can you keep from falling out of love with yourself as the illness attempts to diminish or disfigure you.”

I’ve long envied literary men who write boldly about their various afflictions, fatal and otherwise, knowing that their ability to do their job is never in doubt and they relish the protection that their reputations afford them.

This is not the case for shift workers, dishwashers, desk jockeys that fill boxes with numbers for a modest salary, or almost anyone else. And not for girl reporters trying to figure out how to work sick.

I am currently reading Working Bodies: Chronic Illness in the Canadian Workplace (McGill-Queens University Press, 2014). It is dedicated to “all Canadians living with chronic illness who want to have meaningful employment and engagement in the workplace.”

Continue reading

How not to tell your new colleagues you’ve got a chronic illness (Part 14)

When the pain came, I carried it on my shoulders as I waded through the polluted, dirty water of Lake Ontario. When I made it to my desk in the Toronto Star newsroom, I  wrote the final words on Vicki Keith conquest.

“Five down. None to go.”

I followed her in a boat across Erie, Huron and Superior, Ontario (twice), and almost Michigan, and that’s the best lede I could come up with. But at least it was brief.

My knuckles were swollen, my fingers bunched into fists. They looked like boxer’s hands. I punched gingerly at the keys, wincing. It was like repeatedly hitting a block of cement.

I did not go to emergency, as I had when I was in third-year university. I calmly called my rheumatologist at Mount Sinai and asked for an appointment. His office manager did not see the same urgency that I did, and so she booked me the next available appointment, several months from then. Continue reading