The road to recovery isn't always a straight one
After finishing my weekly Rituxan infusions I was starting to get confident that I was on the cusp of beating back the Granulomatosis with polyangiitis (GPA). It was the course of treatment that my doctors’ had the most faith in and as I walked back from a visit to my nephrologist I was feeling that things were on the upswing.
I had gone into work for the first time in weeks since my kidney specialist’s office is near the studio. I’d worn my new mask that’s designed to help my now non-existent immune system so that I didn’t catch every illness that was riding the Skytrain into Vancouver.
I’d managed not to get arrested for wearing the mask!
Then as I headed down Granville Street I stepped off the curb wrong and fell.
“I think he’s drunk,” someone said as I lay in the road. I scrambled to collect my AirPods which had dislodged from my ears. I wanted to point out that it was before noon and that I was certainly not drunk but that’s the sort of thing a drunk person says.
Instead I said, “I fell huh?”
Which is the sort of clever banter that would be beyond anyone who was actually drunk.
Because I’m on blood thinning drugs the merest bump causes me to bleed like a Russian Tsar and I’d managed to land mostly on my nose. Gathering my AirPods I made it across the street where a homeless man helped me by going into Tim Horton’s to get napkins for me to clean my face up.
I gave him the contents of my wallet as thanks, mentally noting that only he and an English accented man stopped to offer anything more than an assessment on my sobriety.
“I’m praying for you,” he said. I thanked him.
It’s easy to feel like I’m living at extreme ends of life and swing between optimism and despair.
Somedays I look in the mirror and don’t recognize the face that’s looking back at me as it’s swollen and puffy thanks to months of high dosages of steroids. My feet are like balloons blown up as far as they could go, stretching before popping and I’m no longer able to wear nearly any of my shoes.
I’m gaining weight, growing weaker and struggling to do things physically that even a few weeks ago were well within my capabilities. I have to fight my way up the stairs at home and carrying my daughter to bed is a slow process.
“That’s to be expected,” my rheumatologist said when I described my fall later. I’d since been the Emergency Room for an MRI of my brain and had a tetanus shot as a precaution. He seemed concerned but not overly so, a sort of soothing competence that he seems to specialize in.
He explained that the Prednisone that I’m taking results in muscle weakness and some loss of coordination.
As I wait for the Rituxan to take effect I’m cutting back on the Prednisone that’s been used to keep the disease in check. This leads to painful evenings and mornings, the hours where the steroids wear off as I fall asleep and the hours where I wait for them to take effect. The pain is getting worse, but the long term negative effects of Prednisone are such that it’s worth gritting my teeth and fighting through.
One day I will find the pain is more manageable, and then the next day it will be even better as the Rituxan finally takes hold and I begin to win.
I’ve spoken about being blessed with an amazing career and my family has been incredible. I am so lucky to have them around me supporting me as I go through this. Along with my rheumatologist’s soothing competence my family is what makes me optimistic that I’m on the cusp of winning.
They’re the highs and those highs are so much higher than the lows of falling face first into the pavement on Granville Street.