This blog post was created in partnership with The Arthritis Foundation. I was compensated for my time, but I can assure you I wouldn’t pass along this information if I didn’t feel it was valuable to the arthritis community as a whole.
As an adult, I can look back and think of many times that my parents were right and I was clearly wrong. It’s something that we can joke about now, but in the moment would cause frustration.
Of course, as a teen, I didn’t understand why I couldn’t go to a friend’s house if their parents weren’t home or why I wasn’t allowed to take the car and drive to a different state by myself.
But one thing that really sticks out in my mind are the fights that I had with my mom about having arthritis.
I honestly remember sitting in the bathroom with the door locked, crying my eyes out because my mom told me I had to go get an MRI with contrast the following day. The MRI part wasn’t the part that upset me, it was the contrast part. I knew they’d have to inject me with dye and to a young kid that was going to hurt!
I can’t even imagine how my mom was feeling sitting on the other side of the door hearing me cry and scream about it.
You see, when I was in middle school a rheumatologist told me they thought I had psoriatic arthritis. But, since there weren’t any specific tests to pinpoint exactly if that’s what it was, the diagnosis wasn’t ever “official” on my medical file.
I wasn’t even through puberty yet, so in my brain, there was NO way I had arthritis. I WASN’T A GRANDMA!
My knee(s) would flare up, I’d be achy, I’d have some symptoms – and my mom would bring up the arthritis diagnosis and I’d dismiss it. I remember screaming so many times to my Mom (sorry Mom) that I didn’t have arthritis.
This went on even into my 20’s! I remember being a 26-year-old working on a project for work in Chattanooga, TN. I was sitting in the kitchen at my client’s site, talking to my mom on the phone during lunch. I was calling to tell her that my orthopedist wanted me to go get an MRI on my knee because it was acting up again.
“It’s probably your arthritis!” I remember her saying. And again, I got mad because I wasn’t a Grandma. I COULDN’T POSSIBLY have arthritis.
But guess what – in America, there are 54 MILLION Americans with arthritis. And arthritis isn’t just an “elderly disease.” Two-thirds of people with arthritis are under the age of 65, including 300,000 children.
And I was one of those children. . . even though I didn’t FULLY embrace the psoriatic arthritis “official” diagnosis until I was 27, laying in a hospital bed the week of Christmas in so much pain I didn’t know what to do.
Candidly, it took me a while to get a grip on what the diagnosis meant and how it would change my life. I spent a good 6 months in bed, depressed, not wanting to move, in denial.
But then, I had my ‘aha’ moment. It was in connecting with other patients online that I realized I wasn’t alone and I didn’t have to live a life of misery. In fact, I could still live an awesome life DESPITE psoriatic arthritis.
In 2013, I decided to start my blog and start advocating for my condition. One of the first places I went was to the Arthritis Foundation. Getting involved in the local Pittsburgh chapter of the Arthritis Foundation was so refreshing and inspiring. That first year I joined local patients and caregivers and went to Harrisburg to advocate for change. After that experience, I joined the Advocacy and Mission Committee for Arthritis Foundation and had a blast going to state senator and representatives offices. I volunteered for the Jingle Bell Run and the Walk to Cure Arthritis.
The Arthritis Foundation is the Champion of Yes.
Leading the fight for the arthritis community, the Arthritis Foundation helps conquer everyday battles through life-changing information and resources, access to optimal care, advancements in science, and community connections. Their goal is to chart a winning course, guiding families in developing personalized plans for living a full life – and making each day another stride towards a cure. And that’s what they did for me!
Now I will say, The Arthritis Foundation has changed over the last few years in a GREAT way! When I first started, there weren’t as many resources for psoriatic arthritis. But now, that’s not the case at ALL!
They’ve also launched their Live Yes! Arthritis Network which provides personalized help and support to adults living with all types of arthritis and rheumatic conditions and parents or guardians of children living with arthritis. Their programs offer opportunities for connection, education and empowerment via Live Yes! Connect Groups, Online Community and conferences.
If you’re looking to get involved I’d suggest you check out one (or all) of the 3 following focuses within the Live Yes! Network:
The Live Yes! INSIGHTS is going to change the future of arthritis forever. By asking those affected by Arthritis to take a 10-minute assessment where they will share their overall arthritis experience – answering questions relating to their symptoms, pain levels and how arthritis affects their function and mobility – the Arthritis Foundation gets a better sense of what people experience on a daily basis.
The data they collect will then show decision-makers the realities of living with arthritis – ultimately paving the way for change by breaking down barriers to care, accelerating research and creating resources that will make a difference in people’s lives. Click here to learn more about Live Yes! Insights.
The Arthritis Foundation’s in-person, peer-led Live Yes! Connect Groups are not your typical arthritis “support groups.” They are an in-person way (though not in-person right now) to bring adults with all types of arthritis and rheumatic diseases together for fun, social and informative educational events and activities focused on mutual support and positive coping strategies for living well. To learn more and find a group near you, click here.
The Live Yes! Online Community allows adults with all types of arthritis and rheumatic diseases to chat 24/7 about what matters most, including medical issues, frustrations, tips, life hacks and more. To learn more, click here.
I’ve found the Arthritis Foundation resources invaluable and I hope you will too!
If you’re someone who is impacted by autoimmune arthritis, I suggest you check out these tremendous programs. I know they’re a wonderful resource to the community and I hope you all take advantage of the programs they have to offer!
Also, in these times of COVID-19, the Arthritis Foundation has been working to keep the arthritis community safe and up-to-date with reliable and trustworthy information and tips on how to stay healthy, as it’s more important now than ever. For more information, click here.
Wishing You A Pain Free Day!
