There is nothing easy about Juvenile Arthritis. Nothing.
I didn’t have to think long to know what I was going to write on this, my second CreakyJoints blog. This one had to be for the JA kids. Or as I call my favorite Facebook page, Christine’s Kids, because I have adopted them emotionally. I never knew kids got arthritis until I published my memoir. All of a sudden I kept hearing the words Juvenile Arthritis. Could there be such a thing? My perception was still the stigma that arthritis was for the old. But being diagnosed fairly young, I knew that wasn’t the whole story. But kids? I couldn’t comprehend how kids could deal with the pain, the invasion in your life, the way arthritis can stop you in your tracks. I could barely deal at times. What about these kids, these teenagers, these young adults just starting out? How did they cope?
And then at a black tie fundraiser for the Arthritis Foundation in Los Angeles I met some JA kids dressed up in suits and party dresses, confidently speaking at the podium telling their stories, getting up slowly from their chairs, wearing flats so they could walk. I was just a grown up version of them. We were kindred souls. The inner group that sadly knew what really is.
But first, let me clarify what arthritis is for children.
What it isn’t is Osteoarthritis the disease that people get from wear and tear on their joints. Many athletes have Osteoarthritis. And yes, you do get this disease as you get older. But Osteoarthritis is as different from Rheumatoid Juvenile Arthritis as a bumblebee is to a lion. A bee stings you and it hurts, a lion eats you. Sounds gross? Well, there is no doubt that Osteoarthritis hurts. It’s worn out joints that are rubbing against each other. But Rheumatoid Arthritis actually eats at your joints, attacks your organs. Ointment, an aspirin and a Band-Aid help a bee sting. An arsenal of strong, often toxic medications, if you’re lucky, helps your Rheumatoid Arthritis, but even then the complications are always around the corner. Lions don’t go away easily. Because these two diseases both have the word arthritis in them, they are lumped in all one column, when in fact Osteo is a sentence or a paragraph while Rheumatoid is a 500-page book.
Seeing these kids talk about their journey and associating it with my own journey made my heart go out to them. Many days I could barely cope, how did they do it? How do the parents watch as their kids suffer? There is nothing easy about Juvenile Arthritis. Nothing.
The more I learned about JA, the more I realized how little people knew. I was used to getting the ”Oh, I have arthritis in my big toe; it just kills me” replies from well-meaning people who read my memoir about living with arthritis. “I take two aspirin and I’m pretty good,” they would share with me. Right. Two aspirin wouldn’t even nudge RA pain on a bad day.
Once I joined Facebook I learned even more through the exchanges with new friends. Still, there was something missing. The depth, the seriousness, the lack of awareness for the kids. And that was how Christine’s KidsFacebook page was born. A page just for kids and teens. A page to create awareness for a very misunderstood disease. Each week we honor a new Superhero and tell their story. Letters and photos come in from parents and kids all over the world. Sadly, JA knows no boundaries.
My life was taken over with Rheumatoid Arthritis but I got lucky. After years of medications, combinations of medications and research programs I found a medication that put me into medical remission. Time to give back. Time to work to create more awareness for arthritis in general, and for the kids with arthritis in particular. And today my life is still taken over with arthritis, only now it’s for the kids. They have also taken over my heart.
My goal, of course, is a cure. My immediate goal is awareness. Kids shouldn’t be made fun of because they can’t run or jump. Infants should be able to learn how to crawl and walk. Teenagers should be able to dance and play sports. This is what childhood is supposed be about, not doctors’ offices, IV infusions, emergency rooms and hospitals. If I get in a pity party for myself, I think about the kids. They are the ones we should focus on.
So what do we do? We support organizations and social media pages that feature these special kids. As advocates, we work together for awareness. There is more than one way to reach a goal and we need to recognize this and each take our own paths as long as our hearts are in the right place. When you visitChristine’s Kids http://ow.ly/8HUWf your heart can’t be anywhere but in the right place, with these special Superheroes. When you watch the video you will understand. I am not diminishing the pain or suffering from all arthritis. But, as adults we can speak up for ourselves. It’s harder to get someone to listen to the younger ones. We need to stand up and have our voices heard.
Listen to the song, look at the faces. Let’s make a difference. These special kids deserve it.