Read the words of this extraordinary Arthritis Foundation volunteer and Walk to Cure Arthritis honoree.
I have found a home – and an amazing community – with the Arthritis Foundation. But how did I get here? What’s my story? And why am I so passionate about it?
I’m privileged to be the 2019 national honoree for the Walk to Cure Arthritis and a Champion Volunteer. In addition to serving as national honoree for this year’s walk event, I’m chair of the Walk to Cure Arthritis in Philadelphia, as well as team captain for the top fundraising team.
Besides those roles, I’m the national team captain for our Live Yes! Connect Facilitators National Walk Team. I’m a Live Yes! Connect group facilitator for people living with arthritis in my community of King of Prussia, Pennsylvania. And I’m on the Arthritis Foundation local leadership board of directors for Eastern Pennsylvania, where I chair the Live Yes! Connect network.
As one of 70 Platinum Ambassadors for the Arthritis Foundation, I advocate on both the state and federal levels so people with arthritis have access to optimal care and the best medications.
I am 53 with two grown sons, Steven and Nick. I have an amazing full-time career. And I am five years into my rheumatoid arthritis diagnosis.
My RA was acute onset and aggressive. I went from literally no symptoms when I went to bed one night to being unable to lift my arm off the bed the next morning. Five years before that, I had a spine fusion between c2 and c6, where they removed the disc and replaced it with bone and a titanium plate. I immediately thought something had gone terribly wrong with my neck. I got an appointment right away with my spine doctor, who I am so grateful to. I don’t know how he knew, but after examining me, he said, “You have rheumatoid arthritis.”
All my numbers were off the charts – my RA factor number read “greater than 600.” (For those who don’t know, the normal range is less than 15.) I spent months searching and searching for a medical expert, which is sometimes what it takes to get in to see a rheumatologist. And the entire time you are searching, you are dealing with this unbearable pain and other symptoms that go along with RA, all while trying to deal with life, your job, the kids and other things.
Finally, I was lucky enough to find an outstanding rheumatologist. Then it took a few (what seemed like very long) months to find the right cocktail of meds. It can be a very long, painful process to find the right medication, if you ever find it. No one treatment plan works for everyone. I landed on a chemo drug and a biologic. I was fortunate that it took only a few months for the meds to kick in because, emotionally and mentally, it took a lot longer for me to wrap my brain around what this all meant for me.
Enter the Arthritis Foundation. I went looking for a support group to connect with others who had arthritis. There was nothing in my area, so, jumping in feet first, I decided to become a trained facilitator and start a local group. The Live Yes! Arthritis Network connects you to your best life through a powerful network of support. By participating, people gain confidence to help themselves and, in turn, help others. This has been an incredible journey for me. I absolutely love helping people find their Yes!
I decided I wanted to do more. Raising awareness now became my mission. So I got involved with the Walk to Cure Arthritis, forming a great team of family, friends and co-workers, and we set out to fundraise. In 2017, our first year, we were the top fundraising team in Philadelphia. But for me, it wasn’t just about raising the money; it was also about raising awareness.
I was quickly realizing how much people didn’t know about arthritis, or how much they misunderstood. They needed to know some of the astounding facts: that one in four adults in this country have arthritis; that it’s the #1 cause of disability in the U.S.; that anyone can get arthritis, that RA isn’t just a grandmother’s disease, that I’m not too young for this; and that 300,000 children in the U.S. have a form of juvenile arthritis.
We raised awareness by telling my story! In the past two years of the walk event in Philadelphia, my team and I have raised almost $50,000, and our goal for this year is $35,000.
At this point in my journey, my symptoms are managed with medication, and my everyday pain is about 3 out of 10. I feel good physically most days. And giving back through the Arthritis Foundation, both as a Live Yes! Connect leader and as a team captain for the walk, has done an amazing thing for how I feel mentally and emotionally. Arthritis and other rheumatic diseases can take such a toll on us – and your frame of mind is just as important as the pain itself.
I realized I was getting good at telling my story and asking people to help. So the next natural step for me was to become an Advocate, which was easy, and I’ve enjoyed furthering the mission to conquer arthritis. From there, I took advocacy one step further and became an Ambassador, and then this past year became a Platinum Ambassador. I was recently in Washington, DC, at the Arthritis Foundation’s Advocacy Summit and served as the state coordinator for the Commonwealth of Pennsylvania’s delegation on Capitol Hill. I spent several days with amazing volunteers who are so dedicated to our mission.
The most recent role I have accepted with the Foundation is serving on our local leadership board as chair of the Live Yes! Connect network. As chair, I will help grow this network and resources for the thousands of participants in Eastern Pennsylvania.
If you can’t tell by now, I believe in the mission of the Arthritis Foundation. I actually don’t know where I would be in my rheumatoid arthritis journey without them. I am passionate about being part of this amazing community. The Foundation has fantastic resources and is doing awesome work for so many, including me. They have given me the opportunity to be part of something more: a community that brings people together who might otherwise be alone in their diagnosis.