Who’s afraid of the wolf? (Part 3)

If home is where the heart is, what about the hurt?

Would it follow me there, too?

Upon my return from university, I sat in my straight jacket of pain watching my parents take action.

My dad pulled out the plaid sofa bed in the basement so I could sleep upright by leaning on the back of the couch. He moved the TV close, pushed the shuffleboard out of the way.

My mom brought me warm towels to pack around my chest. When that didn’t ease the hurt, she wrapped her arms around me, trying to minimize the ripping pain that came with each breath.

They’d booked me an appointment for the following day with our family doctor, but I was without hope. After five doctors and 18 months, I already viewed the medical profession with doubt and disappointment.

But as I unspooled my story to our GP, he didn’t take his eyes off of me, or scrawl a prescription for sleeping pills. He put a stethoscope to my chest, probed by tender joints and then leaned close.

“I think you have systemic lupus,” he said.

I remember thinking, ‘Lupus, like a wolf? What an awful name for a disease.’

Who's afraid of the wolf?

Who’s afraid of the wolf?

If he told me that was an autoimmune disease, I can’t remember. Or that my own cells were attacking my connective tissue? The facts of the disease are like a tattoo I got when I was drunk; I can’t quite remember how they got there.

The doctor explained I either had pericarditis or pleuritis; inflammation of the connective tissue surrounding the heart or inflammation of the lining around the lungs. Both cause intense pain upon breathing, laughing, crying—essentially, the stuff of life was hurting.

I told him I planned to start my first job as a daily newspaper reporter on the following Monday.

He never told me not to. Instead, he put me on 20 milligrams of prednisone (an apparent miracle drug), booked a chest x-ray and an appointment with a specialist. He also sent me for blood tests to look for telltale markers to confirm his tentative diagnosis.

Outside, he told my mother that I was seriously ill. And he was a bit surprised that I still wanted to start my summer internship. He couldn’t figure out why I wasn’t defeated by the diagnosis.

But here’s the thing. I was overcome with relief. I felt like running down the street cheering; if I could. Anyone who has gone for months or years of misdiagnosis is relieved to know it’s more than a mirage. Fear comes later.

And besides, I had no idea I was stuck with a serious chronic disease for the rest of my life. I left thinking that if I took the prescribed medication, I would get better.

I didn’t yet know to be afraid of the wolf that was stalking me.

I also felt I couldn’t turn my back on this opportunity. Only four other third-year journalism students in my cohort had landed a summer job at a daily newspaper. With this experience, I was pretty sure that the following year, upon graduation, I could win a summer internship at the Toronto Star. I needed this experience—and the clippings for my portfolio.

My parents didn’t know how to react to my determination to show up for work. They couldn’t forbid me to go. And if I was only comfortable standing, why not try working? That said, I couldn’t walk a block.

On Monday morning at 8 a.m., five days after my tentative diagnosis, I got into my mom’s Ford Pinto and she drove me 45 minutes to  the Province offices in downtown Vancouver. As I shuffled into the building, trying not to pant, I wondered when the prednisone would kick in so I could shake this thing off. I also wondered how I would get through the first day of the start of my career.

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19 thoughts on “Who’s afraid of the wolf? (Part 3)

  1. Emma Thom

    It took a doctor 8 years to finally give my condition a name . The relief of being able to tell people what was wrong with me was palpable .

    Liked by 1 person

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  2. Carrie Buchanan

    I had forgotten all about the feelings accompanying diagnosis, which in my case took two years. I cried with relief in the specialist’s office. That relief reaction was exactly as you describe it! I wasn’t insane.

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    1. Shelley Page Post author

      I know….it’s such a relief, and I always feel bad for those who struggle for a diagnosis, because they are left on the fringes of ‘conventional’ wisdom and often denied support and empathy.

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  3. bleak2chic

    I love your writing. From one writer to another im always drawn to people that can bring me into the room or help me picture in some sense what they are experiencing. thanks for sharing. …

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    1. Shelley Page Post author

      Thanks so much…I have to admit that I’m a bit surprised I’m writing this — something I’ve never done before — -for a course in Digital Strategy. I’m neglecting the Content Rules book. How much have you read???

      Liked by 1 person

      Reply
  4. Rosemary

    You’re writing is so dynamic and emotional. You should definitely write a book! Having my own auto-immune issues, I know the hope for a cure (or even just management) that happens after diagnosis. It’s the subsequent ups and downs that can be so frustrating.

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  5. Kathy Sterman

    I’ve heard of Lupus but had no idea how it affected people. Shelley, I admire your persistence and courage. Thank you so much for sharing your stories. You are truly inspiring and your experience really puts perspective on how silly it is to dwell on the small stuff we tend to worry about.

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    1. Shelley Page Post author

      Thanks Kathy. Lupus is one of those weird autoimmune diseases that’s generally invisible, and is often very wicked…I appreciate you writing — I’m hoping that as my blog gains followers I can reach more chronically ill people.

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  6. pamela

    It shows the importance of good and attentive doctors. Your parents sound so loving and supportive. Their support must have helped you a lot with your diagnosis as well.

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  7. angelinaaurora

    I’m glued to your blog, waiting to see what happens next! I can feel your relief at finally getting a diagnosis (no matter how grim.) It’s oddly comforting to know that there is a reason for what you were going through.

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  8. Kathy

    Shelley, kudos to you for sharing your OWN story, writing in the evocative and informative style we know and love you for. Its seems to me there is a coming together of elements here that is incredibly compelling and filled with energy. If this “assignment” lays the groundwork for a book (as one of the other comments suggested) I think it would be hugely beneficial to many and very successful. Wow. Truth alongside inspired reflection is so powerful.

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    1. Shelley Page Post author

      Thanks so much for the support Kathy..It’s hard finding time to push it through with all of the regular stuff of life, but it’s already pushed beyond what I’ve written before, so who knows where it will lead!!!

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