Category Archives: lupus

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

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

The Death Knock and adventures as a junior reporter (Part 19)

It’s called a “pick up” or a “death knock,” and it’s among the most unpleasant tasks a general assignment reporter on the city desk can draw.

The most experienced of our breed can get a grieving mother to unchain her door, make a pot of tea, and unspool woeful stories of her lost love, usually urged on by an invitation to “set the record straight” about son Jimmy the Bank Robber or make sure Little Emily the Heroin Addict isn’t misremembered. The most tenacious of us leave the widow’s home with an entire photo album under our arm so there are no pictures left for media outlets late to the tea party.

This is another one of those tasks that journalism school can’t prepare you for.

So many years ago, in Deep Cove, B.C., a nine-year-old boy left home on his bicycle early one morning. When he didn’t return for lunch, his parents wandered the neighbourhood, calling his name. When the police later knocked on their door, they said the helmet-less boy had been found at the bottom of a cliff. It was assumed he’d accidentally plunged to his death.

My assignment: knock once again on the parents’ door, get a few quotes about proposed B.C. bike helmet law, and a photo of their lost boy. 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

Selena Gomez reveals she has lupus and an obscure illness gets star treatment

The world’s teenage girls just got a crash course on lupus.

Selena Gomez has 34 million Twitter followers, 47 million Instagram followers and 58 million Facebook followers.

And she has lupus.

Suddenly, the obscure has become front-page tabloid fodder.

I feel horrible for her, but oddly happy for those of us who suffer from the fatigue-inducing, organ-destroying autoimmune disease. Continue reading