Tag Archives: invisible chronic illness

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

A rotten diagnosis (Part 22)

An ‘X’ was drawn on my back to mark the spot where the biopsy needle was to be plunged. That’s when the nephrologist executed the bait and switch.

“Ok, how about you do it?”

“The biopsy? Me?”

Hovering over me — face down, backside up— the attending nephrologist discussed the procedure with the resident, who’d been at his side since I met them the previous afternoon. (It was a teaching hospital).

“Yes, you’ve watched enough of these. You’re ready.”

“It’s a straight shot?”

“More or less.”

One of them touched my shoulder. “How are you feeling?”

Uh.

I lifted my head, twisted my neck to look them both in the eyes. I’d read somewhere that you’re supposed to make eye contact with specialists so they see you as a person instead of a procedure.

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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.

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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?

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Dating, illness and the survival instinct (part 17)

He’d cared for me before diagnosis, pulling me out of snow banks when I fell. Later, he rode the prednisone rollercoaster with me, as my spirits sunk then soared and I dealt with a swollen face and ripped skin, immunosuppression and insomnia.

During the three years we’d worked in different cities, we saw each other every few months and vacationed together. He’d take my woeful phone calls, reminding me, “You can do it.”

When he was posted to Toronto, we decided to move in together, without much thought.

In marriages involving chronic illness, divorce rates are said to be more than 75 per cent. A study I found in the Journal of Oncology reported that spouses are actually lonelier than their ill partners and have lower levels of well-being and marital satisfaction. When illness takes over, partners become patient and caregiver. Continue reading

Journalism 201: Remember to bring your prednisone to prison (Part 16)

“Don’t forget to take their picture.”

As I’d find out, not the best advice for a reporter sent to sneak into a third-world prison.

I was heading to Trinidad to interview two imprisoned teenage drug mules who had attempted to smuggle three suitcases of marijuana back to Canada. Both 17, they’d been sentenced to eight years in an adult prison, filled with murderers on death row.

The Star wanted the boys’ story.

It hadn’t started out as my story. A new hire, a summer student heading to Columbia University’s journalism school in the fall, had been following the case and already called the prison warden asking to interview the boys. Although she had a hunger for foreign assignments and a passport filled with stamps, she was too green to go.

Instead, I was assigned to show up at the prison, say I was a cousin, get their story and a photo: proof of life for the front page. 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

The mantra, the mental spellcheck and a call to the show (Part 12)

A suburban monster, he overpowered her from behind, dragging her into the backyard of her parents’ Scarborough home. There, he strangled her with an electrical cord, while viciously raping her for almost an hour.

He left her tied to a fence with her own belt like a dog.

The details in the press release were spare, stark. The victim was 19. I wasn’t much older.

I quickly typed up the brief and filed it to the senior cop reporter based at One Yonge, Toronto Star headquarters.

Reporters are observers. That is our blessing and our curse. We know we can’t help, but we’re uncertain what or how to feel, as though it were a professional liability.

Still, as I typed, I trembled, my mind dancing from the victim to the imagined rapist to the long hand hopping past six. Deadlines were very hard for me then, whether I was writing about a brutal sexual assault or a motion on garbage pick up at Scarborough city hall, which by then was my part-time beat in the Star’s east bureau.

My daily prednisone dose, at 5 mg (down from 80 mg), was finally below the replacement level for the cortisol the adrenal glands typically produce. And it was unclear if my adrenals, sitting atop the kidneys, had started producing cortisol again. The longer you are on prednisone, the higher the dose, the harder it is for the adrenals to bounce back. 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?

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