This holiday season, wreaths adorn front doors, stockings are hung on fireplaces, and stores stock decorations and delicious food.
Tamara Komuniecki’s general store on Granville Island joins in the holiday cheer, with Tamara the owner working hard during the busiest season for her shop.
But behind Tamara’s sunny smile hides a painful truth, one that shows itself in her swollen, twisted knuckles. Tamara, a younger-than-she looks 45, has lived her entire life battling the ravages of rheumatoid arthritis since her diagnosis at age six.
“When I was first diagnosed, treatment options were very different. They were not very aggressive in treating rheumatoid arthritis for young people and I was assured it would go into remission when I was a teenager. Spoiler alert: I seem to have the type of arthritis that just doesn’t do remission,” said Tamara.
Her life has been punctuated by challenges that accompany the auto-immune disorder. Finding the right type of treatment dominated her early years, with physicians and rheumatologists trying a ‘throw everything at it, see what sticks’ type of approach to treatment – one that Tamara does not recount fondly. “I felt very afraid of side effects after years of ineffective treatment. It seemed like all I was getting was the worst end of it, and none of the benefits.” This was an attitude Tamara said she held until she met with Arthritis Research Canada’s scientific director and her current rheumatologist, Dr. John Esdaile.
The life-changing research conducted by Dr. Esdaile with Arthritis Research Canada is supported by the Province, who provided over $3 million in funding since 2011 for advancing arthritis research and treatment.
“Dr. Esdaile made it very clear that by not seeking treatment, I was putting myself at risk of heart attack and stroke thanks to the inflammation in my body, exacerbated by my existing blood disorder. Sadly, this became very clear to me when I experienced a series of strokes when I was pregnant with my first child, resulting in a stillbirth,” said Tamara. With the help of Arthritis Research Canada and Dr. Esdaile, Tamara sought treatment, including trying drugs for arthritis and her blood disorder. Happily she was able to have another child, and her now seven-year-old son is the “light of her life” and a bright spark for Tamara.
Her son guides her future when it seems daunting and frightening. Living with complications of rheumatoid arthritis are not for the faint of heart. “I have had 13 surgeries, several of them major. When I think about the future, it is with an eye towards what needs to be replaced next, like my left hip. My right hip has already been replaced. It takes my breath away knowing what my future holds, with the realities of disfigurement and joint deterioration.”
Tamara does not let the prospect of more surgeries and joint replacements stop her future. Not content with just being a business owner and journalist, she is actively engaged in advocacy work with Arthritis Research Canada, doing outreach to raise awareness of arthritis and rheumatoid arthritis, as well as working with the communications team at St. Paul’s Hospital, telling her patient story to help effect positive change with their new hospital. Life doesn’t stop in between surgeries, rehab, rheumatology visits, blood specialist visits and pharmacies for Tamara. While her medications help her manage, she will do as much as she can.
“Telling my story, being involved with the research and seeing what studies are happening on-the-ground is so cathartic for me. It helps me express myself, see what new treatments are available, and gives me and others with arthritis – hope,” said Tamara about why she volunteers and engages with others in her busy and demanding life.
Taking it a day at a time, making a conscious effort to enjoy the moments given to us – these are the words of wisdom Tamara wants to share this holiday. Each year, she sews a new patch on to her family’s felt stockings. It could be a patch to commemorate learning how to ski, or some other family achievement. Some years she is able to sew, some she cannot work her hands to stitch and she has to hot-glue the patch. But every year, Tamara finds something to celebrate during the holiday season.
Arthritis Research Canada Quick Facts:
- There are over 100 types of arthritis in all (e.g., rheumatoid arthritis, lupus, osteoarthritis, gout, juvenile rheumatoid arthritis).
- Arthritis affects 350 million people worldwide, including 5.2 million Canadians – nearly 700,000 of whom are British Columbians.
- One in six Canadians have a disabling arthritis, and 60% of people are affected with arthritis before they are 60 years of age.
Visit Arthritis Research Canada: www.arthritisresearch.ca/