The Juvenile Arthritis Onset Story of a Little Girl, Now Twentysomething Living Well with RA

I can’t believe it’s already July, but I have to admit that I’ve been looking forward to it for a while.  July is Juvenile Arthritis Awareness Month and it’s a time where we get to celebrate and honor the over 300,000 kids living with juvenile arthritis and create a stir of awareness for juvenile arthritis.  These kids are absolutely amazing.  They fight battles with pain everyday of their lives and yet they still have big, goofy smiles on their faces through it all.

I’d like to introduce you to my good friend and former colleague, Ashley Boynes.  Ashley was officially diagnosed with JA in 5th grade.  She’s now in her twenties and is a beautiful writer, so I asked her to be our first blog for JA Month.  After tossing around ideas, she came up with the one below that I think will touch families everywhere…her onset story.  The story of what it was like feeling arthritis pain before she knew what it was.  Playing through the pain and just being a kid.

Moving Together in Prevention. Control. Cure.

Lisa

The Juvenile Arthritis Onset Story of a Little Girl, Now Twentysomething Living Well with RA

I’ve told many, many people that I have arthritis. It’s almost as common for me as, say, telling someone my name, my age, that I’m from Pittsburgh, that I have a dog, a boyfriend, that I’m a writer. (Though, since I’m only 26, it usually provokes more of a surprised reaction than stating those other facts.)

I tell many people, too, that I’ve had it since I was about 10 years old. What I’ve failed to ever REALLY share, though, is my “onset story.”

As an active member of the so-called “arthritis community” online, I’ve heard and read so much about the fabled onset story, but, I’m not so sure, with all of my journaling, and blogging, and sharing, if I’ve ever actually shared my own. While I’ve shared the good, bad, and ugly of my not-always-pretty journey on my path to seeking wellness while living with multiple chronic illness – at the forefront of which has always been rheumatoid arthritis and its nasty cousins which include various other chronic autoimmune and chronic pain disorders – I’ve never really told “the world” (for lack of a better term) how I came to “get” my RA.
Well, of course, no one really knows how we come to get arthritis, but here’s how I came to discover mine, how I feel about it, and, if you will, MY onset story.

Here’s what I can remember.

Let’s journey back in time to circa 1992. I’m in a frilly white dress that my Nana bought me, dressed up like a beautiful miniature princess bride. It was my First Holy Communion and my house was packed chock full of family and friends. Somehow, throughout that day, someone’s rambuctious kid – even more rambuctious than myself – accidentally (or maybe not) pushed me down the steps. Kids will be kids, and I seemed to be fine otherwise, except for twisting my ankle, which put me in an Air Cast and ended up being my first significant injury worth remembering. Now, maybe I’m recalling things wrong – after all, this was 18 years ago, but, for me, it seems that from that day on, my right ankle has always bothered me. Nonetheless, I was still able to keep on playing softball and basketball, and I was able to continue on “being a kid” … for a couple more years.

When I was in around age 10, I was so involved in softball that it pretty much consumed my entire life. I’d played since the t-ball level and I was consistently one of the best players on my team. I made the All-Stars each year, was starting pitcher, bat at the top of the lineup, and envisioned playing at the high school level. However, I started noticing that after each game, I was beginning to become abnormally sore – and not like the other girls. This was an entirely new level of sore, not typical-athlete sore, at least not in my mind. I was always active in sports and these were definitely unchartered waters. Finally, after almost a year of these aches and pains, my right shoulder got so bad from pitching that my parents and I decided that I needed to see a doctor. We went to my pediatrician who, at the time, said that it was “growing pains” and that I was probably “overdoing it” with the sports.

By the time I was in 5th grade, I could barely play anymore. During one softball game, I stood on the mound in tears. Now, let me pause to say that, I’m a very sweet, mild-mannerd, heart-of-gold type girl in person. Almost demure. That being said, “softball Ashley” … not so much. On the field, I was a completely different person – “competitive” was putting it mildly, and so for me to show tears and break my ferocious facade and fighting spirit was not normal, and, for me, was simply not acceptable. My family knew that something was wrong. Finally. after a couple of failed pediatrician and PCP visits, we went to a rheumatologist, who is still my “rheumy’ today. He initially diagnosed me just based on physical exam and standard bloodwork (SED rate, etc.)  Later, x-rays were able to confirm some damage to certain joints and further confirm the diagnosis.

I won’t pretend that it was easy. I was not even in to my middle school “career” yet, and here, I had an “old lady” disease (or so i thought.)  I was already super-awkward – a “gifted” student, shy, sort of in-between the “cool” kids and the not-so-cool kids, and I feared that this disease would make it even harder for me to fit in. I asked my rheumatologist if I could still play sports. He told me that I could, that exercise is important, and that I should, as long as I felt that I was able, and as long as I didn’t overdo it. So, I tried to play softball and basketball for as long as I could.

It didn’t make school any easier, though. I got teased when kids found out I had arthritis – and this was only by the kids who believed me. The other half thought that I was lying. Softball got harder on me physically and I grew more and more frustrated because things hurt that didn’t hurt before, and were physically challenging that weren’t difficult before. I wasn’t able to run as well as I had used to, and I didn’t feel as capable as I had once been. My self-confidence took a huge hit. This was difficult time for me.

I did get special treatment at school. I got to sit out of gym classes, and come in to school late when I was having flares. The other students, of course, didn’t like this. As I grew older, it got even harder. I walked with a limp, and kids teased me or gossiped behind my back. I loved fashion, so if I wore cute shoes and walked with a limp – well, that was, of course, endlessly hilarious to them. I ended up trying out for cheerleading. I did make junior varsity, but I didn’t make varsity because, naturally, with having polyarticular JRA, I could not do the types of gymnastics and tumbling required to make the team. I loved cheering, but it was embarassing for me to be on JV when I wanted to be a Varsity cheerleader.
Pretty soon, I had to quit both cheerleading and softball. Basketball had been long gone by the time I got to high school because of all of the running that I was unable to do. I’d had my first knee surgery in 1998 and had trouble with it ever since. To this day, my knee has never been quite the same and is still not back to normal.

I bet you’re all reading this, thinking that it sounds pretty depressing, right? Wrong.
This is a happy story, and I’ll tell you why…

It doesn’t matter if you’re religious or not: “God doesn’t waste pain.”  – Stay with me on this. To me, this isn’t about God. It’s about making do with what you are given. You’re given pain? Okay….what are you going to do with that pain? Don’t waste it. Build a path around it. Play through it. Do something WITH it. That’s what I did. That’s what you all should do. So how is my story happy? How does this all relate? Let’s go back to 5th grade Ashley.
She was a gifted student. Kind of a nerd. She also was a talented writer, but she threw everything into sports, and wanting to be popular. Since she devoted all of her time into sports, she didn’t make much time to develop her craft or her other interests. When she got diagnosed with arthritis, it was a challenge, it was difficult, and giving up softball was, to this day, one of the hardest and saddest things she’d had to do. However, it forced her to: a.) make friends elsewhere and b.) discover other things about herself and cultivate other interests.
Moral of this story? I didn’t waste my pain. I used it to redirect my life’s path. Yes, arthritis did force me to give up softball, basketball, and cheerleading. No, I cannot run a marathon and I’m in pain or sick a lot of the time. However, I may not have discovered my love for or talent for writing if that pain had not redirected me to find it. I may not have made friends outside of my softball friends if arthritis had not forced me to find them. I may have overlooked certain components of myself had I not been forced to discover them.

The point is this – my diagnosis was not the end of my life. It might seem like it for you at the time, especially if you are a young person. However, I’ve said it many times before – being sick is negative, but, you can turn it into something positive! I have had to give up many things because of arthritis but I’ve also gained so many things because of it. Working at the Arthritis Foundation. Friends in the arthritis community. Further cultivating my love for writing and honing in on my other interests. Plus, instead of softball, I now do yoga. I walk with my dog instead of playing sports. Last year, I coached cheerleading at a local middle school, and I still get to enjoy my little cousin’s t-ball games. There are always ways that you can still enjoy the things that you love….sometimes, arthritis doesn’t mean the end of anything, it just means that you have to make some adaptations!

The younger you are when you’re diagnosed, the more time that you have to figure these things out for yourself :)

There are so many possibilities and ways to live well even when living with arthritis!

Thanks for reading!

Ashley Boynes

12 thoughts on “The Juvenile Arthritis Onset Story of a Little Girl, Now Twentysomething Living Well with RA

  1. Another JRA child turned RA thirtysometing adult. I could have written this story. Just replace sports with dance. And I want to thank Ashley for not only showing today’s kids with JA that you will thrive and move on from this but also reminding me to move past my pain. It’s easy when in the midst of a flare to forget. Learn to cherish our good days. And remember to love yourself.

  2. I enjoyed the read Ashley. Sometimes it hard to share such personal things but I commend you for all you do despite the diseases you have. You are touching so many lives in such a positive manner. Keep up the great work !

  3. Ashley,

    I hope this story can reach as many young people as possible. I’m sure there are a lot of frustrated, confused kids out there that could use some reassurance and support, and it sounds like you are the candidate for that job. I hope your new blogging venue will allow you to do what you do best…..inspire, and inform your readers! Great read!

  4. What an inspiration you are Ashley! Not just to the kids who still have their whole lives to discover but to us older folks who have lived with the pain for years and focused more on it than anything. You made me think. A lot. Thank you

  5. Ashley, thank you for sharing your story, you are a wonderful writer. There are so many similarities that I share with your story. You are such a great inspiration to others out there dealing with the same illness. I have also learned through the years that movement is the best medicine, back when I was diagnosed I was told that I couldn’t do anything and remained that way until I was sent to the YMCA by my Rheumy. That was the best thing that ever happened. I now have a home gym and feel soo much better after working out. It’s not a hard core workout by any means but at least I am moving, that is all that matters.
    Keep up the writing and inspiring others!!

  6. Ashley,

    Thank you so much for sharing your story. You touched on such an important topic for all of us, no matter what our limitations are. VERY INSPIRING!!!

  7. Ashley … I do remember that summer day when you stood on the pitchers mound with tears running down your face as I actually was at that game. Sharing your story is so amazing and will help others with the same illness. You are a fantastic writer and we love to read your blogs as my wife also has R A . God Bless and keep up this fantastic work.

  8. Thank you for spreading the word about arthritis, especially juvenile onset! So inspirational! Hang in there and continue to keep your amazing attitude!

  9. I just read your story and then read it to my 8 year old daughter that was diagnosised at 1 year old with poly JRA. Your story was inspiring and It was a great story for my daughter to hear. As she gets older it is more and more difficult to keep her positive regarding her health issues. Thank you for sharing your story.

  10. Pingback: Back to School with Juvenile Arthritis: Some Patient Resources & Personal Thoughts – by Ashley Boynes-Shuck « Wellness With a Side of Life, Please

  11. Something that I didn’t share in this article is that I ended up becoming Entertainment Editor of the school newspaper, Editor-in-Chief of the high school yearbook, got an apprenticeship during high school in Journalistic Layout & Design, and went on to sit on the editorial board of my college newspaper. I’m now a writer for a living, soon to be published. So, I didn’t end up becoming a college softball player as I’d dreamed, but, my life’s path has led me to be able to write and help others which is JUST as — if not more — rewarding. Every story can have a happy ending IF YOU WRITE IT! :) :) Good luck to all the others out there living with Juvenile Arthritis! And, please consider reading my new blog post, Back to School with Arthritis – http://midatlanticarthritis.wordpress.com/2012/08/29/back-to-school-with-juvenile-arthritis-some-patient-resources-personal-thoughts-by-ashley-boynes-shuck/

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