Tag Archives: chronic illness

When can I go back to work? (Part 23)

Two rheumatologists, a neurologist and a nephrologist walked into a bar.
Instead of ordering a cocktail, they prescribe one.
Ba-da-bing
All men in various shades of white coat and of various ages, from neophyte autoimmune specialist to veteran kidney doc, with hundreds of transplants to his scalpel. They strolled into my hospital room and crowded around the foot of my bed, a horseshoe of specialists.
When can I go back to work? I demanded.
Now, so many years later, I can’t believe that my fitness to work was my nagging worry.
I should have asked whether I was going to die. Or if I would need a kidney transplant one day. Or why wavy lines, flashing lights and shooting stars kept disrupting my vision unpredictably, several a day? And why did I keep falling over? Also, without warning. Or if all the medications — that cocktail I was referring to — they’d given me in recent days would turn things around for me?
I didn’t know the answer to any of those more important questions. Nor, did I seek them.
I’d just been diagnosed the lupus nephritis, Class IV, which is “diffuse, proliferative” or runaway inflammation. My kidneys were failing.
But I just wanted to know when I could return to work as a science journalist at the Ottawa Citizen, a job I’d landed after four plus years at the Toronto Star. Good health seemed easier to achieve to me, than scrabbling to win a newspaper job.
Again, so many years later, I puzzle over my priorities. Work over health? How could that be?
The collection of specialists did not chastise me for my desire to return to work quickly, or tell me I had my priorities wrong. Instead, I suspect they liked my spunk, my can-do attitude, which was in direct opposition to my need for rest, but fuelled my long-standing career aspirations. The doctors all fed into my delusion that I could work full-time, all the time. Chase the scientific version of ambulances, such as new discoveries detailed in Nature or Science journals.
No one ever told me to give it rest.
And I can hardly blame myself for lacking wisdom, or a role model in sickness.
Denial is not just a river in Egypt, to paraphrase Mark Twain. It’s also a psychological coping mechanism so we can get up every morning. If we were truly cognizant of every potential risk in the face of a runaway chronic illness, we would have trouble coping, much less carrying on.
My handy precept of myself was that I was strong, capable and could do anything. Where to stash this new nuisance called lupus nephritis?
At that time, age 26, I couldn’t think of a single person who had gone on sick leave from the Toronto Star or Ottawa Citizen newsroom, except for stints in rehab for alcoholism, which were acceptable occupational hazards.
The negotiations began.
“Four weeks off?” I asked.
“Three months,” Dr. Smith countered.
“That seems too long.”
I feared that Nicole Baer might be given my science writer job. Or Joanne Laucius. Nicole was the part-time science writer and stiff competition. We were constantly trying to scoop each other by getting advance copies of scientific studies. Joanne had applied for my job two years earlier and seemed to still covet it. Either woman could swoop in while I was ailing.
Imagine being worried someone would steal your job as a science writer?
So, I bargained with the specialists like a Western tourist haggling with a Turkish carpet dealer and got them down to eight weeks.
Whether I would actually be fit to return to work was another issue, that I pushed out of my mind. I’d always wanted to go to Egypt.
I was more worried about phoning the City Editor to tell him I was taking two months off.
In those days, you couldn’t send an inflammatory email or a text. I had to share news of my inflammation over the phone.
The copy clerk shouted over the heads of the newsroom: “Randy. Shelley Page wants to talk to you.”
I was crying even before Randall Denley picked up the phone.
I downplayed my illness, my stage of lupus nephritis and focused on my return to work.
“I’m on lots of drugs. They will make me better. But I need time for them to work.”
“How much time?”
I lied, shaving two weeks off the agreed upon leave. Notice I’ve still never called it sick leave.
Sure, I’d be ready to return in six weeks, even though my raging immune system was devouring my kidneys.
He was very nice. He also didn’t get all HR on me. This ‘leave’ was between me and him. He didn’t even ask for a doctor’s note.
(Spoiler alert: When I needed to take long-term sick leave some 18 years later, I was ushered into a hostile world of doubting Human Resources, courier-delivered letters containing non-disclosure agreements I refused to sign, lack of kindness and generosity).
“I’ll be back later,” I declared.

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

Remembering a massacre: a tough pill to swallow (Part 18)

The moment my editor told me to get to the airport, my stomach fell as though I was on the down slope of a roller coaster. I stood in the middle of the newsroom, as a few deskers and reporters stared at me expectantly, wondering if I could possibly decline. I think reporters often dread the unknown of a story and the difficulties that lie ahead in nailing it down, but I feared I just wasn’t up to the task.

I’d been feeling tired, lupus tired, for days and I was walking like an elderly woman whose joints lacked lubricant.

But in Montreal, where the killing began around 5 p.m.,  27 people were shot or stabbed. All the dead were young women; fourteen of them.

How could I not go?

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

Playing with boys (Part 13)

When I joined the Star’s downtown general assignment pool, all the reporters’ desks had been shoved into rows as they renovated the newsroom.

It reminded me of a Grade 8 class at an all-boys school.

Loud-talking guys in wrinkled dress shirts, loosened ties, sitting jowl-to-cheek, ego-to-ego, as they pounded out their stories on 1970s computers, in late stages of decay.

I was seated, temporarily, beside a bulldog of two-way man (meaning he both wrote and took photographs), who immediately showed me the collection of girlie photos he’d amassed on the job. He’d somehow convinced numerous women to pose for photos with their shirts off, and kept a file in his desk, mixed in with pictures of his children (clothed).

Continue reading

A serving of self-loathing, with a dollop of death wish—the rise of autoimmunity? (Part 10)

Before I knew I was the proud owner of an immune system that couldn’t tell self from invader, doctors pushed sedatives on me.

They hypothesized that my buffet of bodily dysfunctions — stabbing pain around my lungs, clawed hands, ruddy and hot joints — were provoked by overwork and exams, stress or anxiety. Something of my doing, or my response to something of my doing.

Then I found out I had an autoimmune disease. And if we’re going to get all psychological about it, it’s like having the mutant spawn of Hannibal Lecter, the self-cannibal of all illnesses. We sufferers allegedly have an acute case of self-loathing with a side order of death wish.

That’s a metaphoric sledgehammer with which to clobber the ever-increasing number of sufferers.

Why do I need this illness?

Continue reading