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 theWalk to Cure Arthritisand 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 aLive Yes! Connectgroup 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.
MyRAwas 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 theWalk 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.
我意识到自己越来越擅长讲述自己的故事，并寻求别人的帮助。所以对我来说，下一个自然的步骤就是成为一名倡导者，这很容易，而且我很享受进一步完成征服关节炎的使命。从那时起，我进一步倡导并成为了大使，然后在过去的一年成为了白金大使。最近，我在华盛顿特区参加了关节炎基金会的倡导峰会，并在国会山担任宾夕法尼亚州联邦代表团的州协调员。我和非常棒的志愿者们一起度过了几天，他们对我们的任务非常投入。2022足球世界杯比赛回看
The most recent role I have accepted with the Foundation is serving on our local leadership board as chair of theLive Yes! Connectnetwork. 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 theArthritis 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.
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