Getting the scoop of my life
The rheumatologist increases the dose of prednisone to 80 mg, enough to medicate an asthmatic elephant, but fails to mention the life-expectancy side of a lupus diagnosis
By Shelley Page
I showed up for my summer newspaper internship, signed some papers, found a desk, took an assignment, only cried in the bathroom.
And after writing 1,000 words for a sidebar on a school board matter that should have been just 400—the Province is a tabloid–I slipped out to await my mother, driving up Granville Street in her Ford Pinto.
That first week, and many after, my mom spent three hours each day as a chauffeur driving to and from the Province. She deserved a medal for driving; me, for acting.
I didn’t tell anybody, editor or the veteran journalists sitting on either side of me, that I’d just been tentatively diagnosed with a serious autoimmune disease.
Operating instructions, please
The truth is, I had no idea how a sick person was supposed to act.
Should I tell people my problems? Or would that make me seem weak? If they knew I was sick, could they send me home? Maybe I should be sent home? Would my diagnosis taint me for my dreamed of future as a journalist?
I busied myself writing about allegedly psychotic polar bears at the Vancouver Zoo, mystery drownings, and managed a scoop about delays at the new Canada Place Convention Centre. I wrote about a drug addict who hung his baby upside down out a window in Gastown. With each assignment came new challenges for someone who couldn’t easily walk a block or climb a flight of stairs or run to a cab to cover a fire.
About 10 days into the job, I met my new rheumatologist, an expert in some autoimmune diseases. He said he’d reviewed my blood tests and I had an extremely high level of anti-dsDNA antibodies—produced by the immune system when it’s failing to distinguish between “self” and “non-self.”
A positive result is very common in lupus. But there were other signs I had the disease, which is diagnosed based on the presence of a number of criteria.
As suspected, my X-rays showed I had an inflammation of the outer lining of my lungs, called pleurisy. But I also had an effusion, which is a build-up of fluid in the pleural space. Worse, he said I’d had this inflammation for so long I had scar tissue around my lungs from chronic inflammation.
Not only was the lining of my lungs inflamed, so was my heart.
This cast a new light on the “pain” I’d been complaining about. I probably could have used a shot of morphine.
The rheumatologist increased my dose of prednisone by 300 per cent to 60 mg. While he never told me to quit my summer reporting gig, he did tell me not to read anything about my illness because all of the textbooks were out of date. So if my determination to keep working seemed odd, it was fuelled by medical professionals trying to keep me ignorant and happy.
I threw myself into my job, writing about two teens who’d disappeared into the wilderness “armed with guns and love,” and interviewing relatives of the victims of the Air India explosion over the Atlantic Ocean.
But a month after seeing the rheumatologist, I was back at his office without an appointment demanding help. I was still experiencing jackhammering pain around my lungs each time I laughed or coughed. I truly felt I couldn’t take it anymore. He upped my prednisone to 80mg, which is a dose you might give an asthmatic elephant.
The prednisone finally kicked in halfway through my internship. The pain dissipated somewhat, and I found I had excess energy and exuberance. I talked constantly, quickly, and was more emotional and confrontational than usual. The doctor never hammered home the effects of prednisone on weight and emotions so I wasn’t aware of them.
But others were.
I became quick to anger at the smallest slights and had to walk away from my assignment editor on a few occasions so I wouldn’t rage at him.
For one assignment, I was sent around to local modelling agencies posing as a wannabe to see how much they would charge me in fees and courses to “become” a model. The cutline under a picture of me in the paper read: “Shelley Page: Told to lose weight.”
Near the end of the summer, I got to ride shotgun in a Brazilian Air Force jet during the Abbotsford Air Show. When friends said they didn’t recognize a photo of me in the cockpit, I assumed the lens distorted my face, not the prednisone.
The scoop of my life
Then something happened to utterly deflate me.
I was in the library that was shared by the Province and the Vancouver Sun when I spotted some medical books. I pulled down an admittedly dusty volume and flipped to the header for system lupus erythematosus. I skimmed the page, looking for what I was told to avoid: And there it was: only 50 per cent of lupus patients would survive beyond five years.
I almost blacked out as the weight of that prognosis flattened me. By refusing to share this information, no matter how outdated, the doctor had left me to process the possible prognosis alone. Anyone would eventually go looking in an old textbook, especially a young journalist. I suddenly felt like a fool.
The next day, I asked the city editor if I could finish two weeks early. I mumbled that I’d been struggling with health problems and I needed a break.
At home, I contemplated the coming fourth year of journalism school. I decided I could handle it if I shed activities and expectations. Off I went, leaving my support system, with no good information about the long-term effects of prednisone or what having serious lupus really meant. Ignorance is not bliss.
Shelley Page’s The Sick Days continues….