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|Please help fund research, treatment, and relief for those who suffer from arthritis!|
|Towards the end of 2013, I could barely ride a bike. This wasnít a case of inexperience: Iíd been bike commuting to work since 1998. I rode every day regardless of the weather. I was like a bike courier with a deadline ó in a trance, weaving through traffic, music blaring through earbuds, optionally observing traffic signs believing I was bombproof. I loved it. I don't ride like that anymore.|
When I first felt achy I worried I was overdoing it. Iíd been riding a lot at that time to rehab my 2012 Achilles rupture. Hauling my kids around town on an Xtracycle (those long bikes that carry kids, pets, groceries, lumber, etc.) without a motor might have been too much.
When it hurt to lift my leg over my top tube I knew the situation might be serious. But I ignored it. When radiating pain in my forearms, low back, waist, and legs surfaced I knew Iíd have to do something. So I modified my bike so Iíd sit upright like Pee Wee Herman. That worked for a while. When that position started to hurt I finally saw my doctor.
I had forgotten I had arthritis (Ankylosing Spondylitis specifically). I'd forgotten that because a miracle drug (Remicade, not EPO) dripped into my veins every 8 weeks for the previous decade rendering me invincible. I'd be transformed from a creaky Tin Man to Lance Armstrong.
After ten years, my body started to reject the healing properties of Remicade. I was in shock! Again.
A freak skiing accident in 1994 left me bruised but not broken. Or so I thought. I just never got better. Fast forward several miserably inactive years, a colleague noticed me walking crooked and hunched over. She recommended a reputable sports medicine specialist, who referred me to a rheumatologist. He diagnosed me with Ankylosing Spondylitis (aka bamboo spine, look it up... warning, it's unpleasant). I started taking medications and my quality of life improved. In 2004, the wonder drug Remicade entered my life and changed everything for the better. My arthritis disappeared. Magical!
When it stopped working I was terrified, irritable, uncomfortable, unhappy, and not much fun to be around. Ask my wife and kids. My inflammation skyrocketed, my mobility plummeted. My doctor said it was time to take a break from meds to let my body re-calibrate. Made sense, sort of, except everything hurt. He approved Prednisone for relief. The only hope I had was that my doctor was hopeful and brilliant. And he was!
This explains how I rode a bike down the coast of Oregon in 2015, in the Arthritis Foundation's People's Coast Classic. Dr. Steve Overman, my rheumatologist, told me he was retiring and hoped Iíd join him. What could I say? Several months before, heíd found me a new miracle drug (Aria Simponi) and I was back in the saddle without pain. Yes, of course, Iíd be there to celebrate his career and show my gratitude for the brilliant and lovely man who diagnosed my condition and always took such thoughtful care of me. I will always be indebted to him.
The ride was fantastic. Incredible people. Some were riders, some werenít. Some rode in honor of family and friends who suffer. A few lost someone dear to them. Some rode through excruciating pain. Those with debilitating conditions sent messages of encouragement. The organizers and support staff fed, hydrated, rested and kept us on course. All were champions of the cause.
Four incredible things happened:
1. I learned kids have arthritis. Hadnít known that. Most people donít. Something ignited in me when I discovered the money we raised supported camps for kids (and their siblings and parents); supported research; funded pediatric rheumatology fellowships. When I heard that my employer, Seattle Childrenís Hospital, had the largest pediatric rheumatology department in the world I was astounded, and embarrassed. I worked just three floors away from them and didnít know about them. I couldnít wait to get back to Seattle and learn more about what they were doing and how I could help.
2. I had a chance to tell my story to an audience for the first time. It surprised me when I stood up to speak that most of my fellow riders didnít know I had arthritis. I spoke about healthcare costs; the fear of losing health insurance; the loneliness of severe, chronic pain, and a diagnosis no one can see; the dread of passing this on to one of my sons; the dull unease that Iíll likely die from lymphoma, a known side effect of my medications; and the oddly positive experience of having a second family (physicians, nurses, receptionists, phlebotomists and fellow patients I sit with every other month in the reclining chairs of an infusion room) at the Seattle Arthritis Clinic. When I finished and looked up, I was stunned to see so many tears.
3. Thatís when I became an advocate. I realized how fortunate Iíd been to receive an early diagnosis, find an expert provider, and have positive responses to medications which slowed my illness and allowed me an active lifestyle. Others havenít been so fortunate and I wanted to share share their stories.
4. I raised money. I didnít have to. Dr. Overman had me covered. But that didnít feel right. So I decided to publish my donor page at the last minute before the ride started. As I embarked, I had $150 in contributions, all from me. I emailed colleagues, friends, and family the night before we rode off and didn't check my fundraising page again until the ride was over. At the finisherís party, someone told me Iíd raised over $3000. I was stunned, and this time I was in tears. I didn't realize how many people would care this much about me and my cause.
In 2016, I rode in my second Oregon Arthritis Bike Classic to raise awareness that kids get arthritis, too. I met so many wonderful and brave kids along my ride! I was so inspired by their stories of strength that I didnít hesitate to commit to ride for a third time. And my generous supporters raised $4420. Amazing!
So Iím riding for kids again in 2017. And this year Iím bringing an expert with me! Iíve inspired one of the nationís top pediatric rheumatologists, Dr. Anne Stevens, to ride. We both work at Seattle Children's Hospital. She is Chief of the Department of Rheumatology. Last year she let me share my story with her department and many from her team contributed to my ride. I was so touched by their generosity but I was even more impressed when I continued to see so many of them volunteering at camps, participating in charitable walks and runs, and giving generously at fundraising events for the Arthritis Foundation. I hope our efforts this year will raise awareness of the incredible work being done by both the Arthritis Foundation and Seattle Childrenís Hospital.
There are so many causes to support. They all are compelling. Mine is important to me because I live it. Iím astonished that we still don't know what causes arthritis. Your gift can help us understand this and will help improve the lives of many. Thank you!