#LiveBold: Doing Better and Giving Back

  • Is it possible to keep getting better, even ten years into treatment with Biologics?

     

    You bet!

     

    About a year ago, I was the subject of the immersive rheumatoid arthritis #LiveBold multimedia story here on HealthCentral. In it, I spoke about finding my way back from a devastating RA flare to a life filled with joy. This week, we are launching the Live Bold Live Now update, filmed exactly a year later. And what a difference a year can make! Much to my surprise, this year’s story of regaining an ability I had thought lost forever.

     

    Image credit: David Govoni

     

    Getting Range

    Before my big flare ten years ago, I used to drive my wheelchair all over downtown Toronto. I regained much after Biologics saved my life in 2005, but by last year, my range was still limited to travelling only a block or two. Massive joint damage from lifelong RA — especially from that last large flare — and fibromyalgia combined to give me severe chronic pain. As explained in the new update, when driving my wheelchair, every bump in the road travels through the frame of the chair into my body, making the pain worse.

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    Last spring, my partner David and I went for a somewhat longer walk and I discovered that sometime over the past year, my range had extended and not just by a little. Instead of only being able to go for two blocks and hurting afterwards, we returned from the walk having travelled about 5 km (about 3 miles)! That was the start of a summer filled with adventures, walking through this city that I love and discovering many new areas filled with natural beauty.

    Did I hurt after these long walks? Sure, but instead of taking weeks to recover, I could now bounce back in a few days. And the adventures, the memories and the photographs I took while roaming the city are more than worth the pain!

     

    Show Us Your Hands!

    Ten years ago, Biologics quite literally saved my life and I’ve taken this second chance very seriously. One of the ways in which I try to make it matter is by working to raise awareness about RA. I am very proud to be one of the co-founders of Show Us Your Hands!, an international awareness nonprofit organization. Our mission is to unite and inspire the inflammatory arthritis community.

     

    We do this through creative community projects that focus on photos of hands. They are a symbol of the strength and perseverance shown by people who live with these autoimmune diseases. We have a Community Collage with photos of over 1,200 hands from all over the world showing the impact of inflammatory arthritis. As you saw in this update, we also have a beautiful photo book that profiles people who live with inflammatory arthritis, telling their stories through photos of their hands.

     

    Show Us Your Hands! is run by a volunteer Board of Directors. We have all been touched by the reactions of the community to our mission. People have told us that Show Us Your Hands! has helped them to no longer feel ashamed of their gnarled and sometimes deformed hands and to proudly show them. And that’s why we are committed to continuing to work for the community.

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    If you want to include your hands in our Community Collage, or perhaps tell a more detail story of something you’re passionate about, please check our website for more details.

     

    Making Connections, Finding Friends

    Working in this wonderful community of ours has given me so much. I am grateful for what I’ve learned from others in the community, as well as for the many friends I’ve made.

     

    One of these friends is Brad Carlson. Brad came to HealthCentral looking for help after receiving a diagnosis of RA and quickly became involved in supporting others. Eventually, he became a writer here on HealthCentral’s RA site, sharing what it’s like to live with severe RA and complications from RA.

     

    Brad’s commitment to raising awareness for RA doesn’t stop there. He is active in fundraising and education initiatives for The Arthritis Foundation in South Carolina. Brad is also a woodworker and as you can see in the RA multimedia story, spends a lot of time in his workshop carving toys for neighborhood children and spoons for members of the RA community. He and I had a great time talking to each other on Skype during the filming and I’m proud to call him both a colleague and a friend.

     

    We hope you’ll enjoy the Live Bold Live Now RA documentary and that you might share it with others to show them what living with RA is really like.

     

     

    Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.

Published On: January 14, 2015