Today, I spoke at an Arthritis Foundation Juvenile Arthritis Family Day event in my area. I wanted to share the text of my speech with you all below. I will have videos and photos at a later time, to share on my arthritis Facebook page. Enjoy, and feel free to leave a comment letting me know what goal or dream you have, that you want to achieve within a year, that you will do despite your arthritis! And please feel free to share this story with other kids or teens with arthritis, or parents of a child with JA. I hope that you’ll like it!
Here’s my personal story:
“Hello, my name is Ashley Boynes-Shuck, and I am known online in the arthritis community as “Arthritis Ashley.” Today I’m going to tell you my juvenile arthritis story, and how I’ve grown to overcome the hurdles that came along with it.
Growing up, I was into softball. I mean, really into softball. Lived, ate, slept, breathed softball. Thought I was going to go to college and play softball. Had I continued on that path, and had I been healthy, I probably would have been good enough to do so, too. So, you can imagine my frustrations when, after games or practices, I would have more pain and soreness than my friends. It didn’t make sense, and my parents took me to a couple of doctors, who basically told my mom that I was suffering “growing pains” and that it was all in my head. Sadly, my grandma has rheumatoid arthritis, too, and recommended that I give her doctor a try. I think that we kept the idea on the back burner for a while, but, it was something to think about. The whole thing just didn’t make sense. In hindsight, there were a lot of red flags: I got sick a lot, occasionally got strange rashes on my face, and my ankles and shoulder always hurt. I clearly remember at my First Holy Communion party in 2nd grade, that a cousin accidentally (or maybe on purpose) pushed me down the steps, and that I was later sent to have my injured ankle looked at, given crutches and an Air Cast at the hospital, and sent home. My ankle was never the same. And that wasn’t normal.
At some point over the next year or two, the pain became too much to bear. I was an All-Star pitcher and a clean-up batter on the first-place team: a true athlete and a true champion. However, at the same time, I was dealing with excruciating pain that no one seemed to understand. My parents saw it, though, and my grandfather even told me later on that he could tell when I was in pain, standing on the pitcher’s mound with tears in my eyes, yet still pushing through and refusing to give up. That became a metaphor for my life: no matter how much pain I’m in, I stay in the game. Even after setbacks, I don’t quit. Some days I hit homeruns, and some days I strike out, but I try not to bench myself. I try to be the champion that I was meant to be.
That wasn’t easy, though, when around the age of 10 or so, I was diagnosed with juvenile rheumatoid arthritis. The terminology surrounding the illness may have changed since then, but the illness is sadly still the same. I was lucky enough to be on the cusp of some wonderful biologic treatments that would prevent further joint damage and deformities. I wasn’t lucky enough to have access to pediatric rheumatologists or programs for kids and teens with JA – at least, not that we knew of at the time. My doctor did his best, though. He is still my rheumatologist today, and is a wonderful doctor and a wonderful man who has become like family to me.
That doesn’t mean that I liked going to him as a kid, and especially not as a teenager. I remember him teasing me about the funky blue nail polish on my toenails when he was examining me after my first knee surgery at age 12. Mind you, bright and bold nail polish colors and funky fingernail art was not the norm back then, as it is today. Being a defiant tween, I huffed and puffed and rolled my eyes at his kind jabs, knowing now that he was only joking. But, as much as I loved getting out of school early for a doctor’s appointment (I mean, really who doesn’t love getting out of school early?) I hated the reason that I had to leave. I despised going to his doctor’s office, being the only person without gray hair in the waiting room. I didn’t really understand why I had to deal with this – all the x-rays and needle jabs and doctor visits – when none of my friends had to do so. I didn’t get why no one at the rheumatologist’s office looked like me. At age 30, I still sometimes feel like that today. There aren’t many younger women in the waiting room, there aren’t many tattoos, or neon running shoes, and there’s still not much nail art. At age 30, my blue nail polish is still out of place because I still seem “too young to have arthritis.”
But we all know I’m not. Neither are you. I’m sure some of you don’t remember a life before arthritis, and, to be honest, neither do I. I bet many of you were diagnosed even younger than me, and I’m sure that you handle it better on some days than others. Me too. I get it. I’m not going to say that everything was rosy during school or that everything is rosy now. People didn’t like that I got special treatment if I needed to come in late or miss a day because of a flare. People thought I was lazy if I skipped gym class. Sometimes I got teased because of my limp, or gossiped about because people thought I was faking it. And though I tried to play softball until I was 16, it didn’t work. I had to quit softball and cheerleading when I was a sophomore because my body just couldn’t do it. Back then, too, I was encouraged to shy away from exercise, though, I find today that it is one of the ONLY things that keeps me out of a flare.
Anyway, let me go back to the late 90s and early 2000s before I bring you up to speed today. I’m not going to say that it was easy to quit sports. I had loved softball and cheerleading, and really enjoyed basketball while I played, too. I didn’t really let anyone know how devastated I was to not be a “softball player” anymore when I had identified as such for so long. I couldn’t put into words how envious I was of the girls on my cheerleading squad who could do a toe touch and other jumps without pain. I will never forget the feeling I felt when I saw and heard a group of boys that I thought were my friends mocking my walk. I won’t lie and say that any of those things were easy. BUT, as you will learn in life, there is usually a silver lining. If any of you are fans of “The Fault in Our Stars,” you’ll remember this quote from the book and the movie: “life isn’t a wish-granting factory.” It’s not. Get used to that now. BUT. That said, you can make your OWN wishes come true. And this is where the happier part of this story begins.
I had to quit sports. Yes. But I didn’t have to quit living my life. I still had a lot of friends and a thriving social life. I was a good student and only stayed home from school when I absolutely had to, and if I had to go to school with a knee brace or an ace bandage on my wrist or crutches, I made sure that the rest of my outfit was absolutely fabulous. (And I won “Best Dressed” my senior year because of it!) I also turned to writing, which was a passion of mine, and became Editor in Chief of my school’s yearbook and the Entertainment Editor of my school newspaper. I career shadowed people in the music industry and took independent studies and apprenticeships in journalism, fashion design, and journalistic layout. I may not have discovered my loves for writing, fashion, or music had arthritis not forced me to expand my interests beyond sports. I went on to college. I had more health issues there. I got an illness called Bells Palsy that left half my face paralyzed. I didn’t let it set me back. I had to take a semester off, but during this time, I got back into journaling and freelance writing, even having work of mine published in local magazines before I even graduated. I also got my own dog, Lucy, a pug mix, who is one of the great loves of my life. Maybe I wouldn’t of ever gotten her or further cultivated my love for animals, or gotten back in touch with my writing, had my health not forced me to find that silver lining. I graduated from college, after doing some awesome internships with KISS fm and an advertising agency. My Bells Palsy went away, but I still had JA. The great thing was, though, that JA didn’t have me. It still doesn’t. It was and is a part of my life and a large part of who I was and who I am … but still not the defining factor.
It didn’t stop me from pursuing my dreams. My dreams look a little different than I thought they would, and I had to adapt, but I’m still living them and am as happy as can be. I’ve always felt called to do two things: to write, and to help people. A post-college position with the Arthritis Foundation allowed me to do both. And although it has evolved and shifted and I’m no longer with the AF full-time, I’m still able to advocate and reach people through my blogging and social media work online as Arthritis Ashley. Yeah, it totally stinks to live with juvenile rheumatoid arthritis, and the other illnesses I’ve since developed like lupus, sjogrens, and celiac disease. But there’s always that silver lining, as I said. Things tend to come full-circle, too. A couple of examples before I go: I was a big fan of Lady Gaga. I had the opportunity to go to her concert in February of 2011. I, believe it or not, had brain surgery (for a condition NOT related to my arthritis, don’t worry,) and wasn’t able to go to the show. I was pretty upset about this. But, believe it or not, her one song, “Born This Way,” served as somewhat of an inspiration and helped to get me through. Like the song says, God doesn’t make any mistakes, and I was born this way – arthritis and all, health problems and all. But I’m still on the right track, as she says in the song.
Aside from Lady Gaga, another role model of mine who I’ve always admired is Oprah Winfrey. As luck would have it, that April, just months later, I got a call that I was invited to the Oprah Winfrey show to sit in the audience after years of being on a waiting list. The producer allowed my mom and I to sit second row. Guess who one of Oprah’s guests was? Lady Gaga. Guess what she sang? Born This Way. It was amazing. Fast-forward to that October. The night before World Arthritis Day, I had been in the hospital for some random inflammation in my arm. I remember being disappointed because I was missing a show on Oprah’s network that I wanted to be watching, and the hospital didn’t get OWN, the Oprah Winfrey Network. I had tweeted about it, thinking nothing of it. The next day ON WORLD ARTHRITIS DAY, of all days, Oprah Winfrey HERSELF personally tweeted my Arthritis Ashley account congratulating me on helping others like myself to emerge from pain. I will never forget that and I know that Oprah could not know how much it meant to me. A dream of mine had always been to go to her show, but to go to her show and see one of my favorite musicians and then later be tweeted BY Oprah herself, about a cause so very dear to my heart? That, my friends, is called a dream come true.
And do you want to know what else? I’m not done dreaming yet. Arthritis may hold me back sometimes, but not all the time And that’s a good thing. But, some days, to be honest, I can barely move. A few weeks ago, despite being a married woman living in my own home, I had to call my Mom to help me with dinner, laundry, and my pets. It happens. Just don’t ever let it break you. In contrast to that, yesterday I biked 16 miles with my husband. Yes, 16 miles. And I have arthritis. You may not believe that I was able to do that, but it’s true. However, there’s been ups and downs. I’ve changed treatment plans a gazillion times, and some days, months, weeks, and years, have been better than others. But I always keep moving forward.
People ask me how I do it, and this is my reply: listen to your body, be positive, and make educated choices for yourself. Or, in some of your cases, make educated choices for your child. Not all drugs work for all people. Not all natural remedies work for all people. Some treatments work, some treatments fail, and some treatments that you will do well on at one point in life, will fail you at another point. It’s a constant roller coaster, and that’s something that you have to be prepared for, unless you are lucky enough to go into remission, which is something that I hope for all of you. But if not, my advice is to try to keep as positive an attitude as possible. Find something you love and do it. If you’re not physically able to do it, adapt. Maybe you aren’t able to play sports, but you’d make a great coach or sports commentator. Maybe your arthritis will hold you back from having a regular office job, but maybe like me you can create a life you’ve dreamed of and work from a home office. These days, I work full-time for a marketing company, but I also am a blogger and have recently completed my first novel, along with completing post-graduate nutrition schooling that has additionally allowed me to become a certified holistic health coach.
So anything you want to do – do it! At least try. The worst that can happen is that it didn’t work out but if you at least try, you’ll never have the regrets of living with wondering what could have been. Maybe you’ll start your own business, or get a job with the Arthritis Foundation, or advocate on Capitol Hill for arthritis causes, as I did in 2012. Maybe you’ll be able to climb mountains, or be a professional dancer or chef, or a triathlete like so many arthritis patients are. If you don’t believe me, read Arthritis Today magazine – there are profile stories of these uplifting people all the time. To me, they are inspiring. That’s my other piece of advice: stay inspired. Don’t let this illness drag you down or make you bitter. Find joy in your life. Take pride in whatever it is that you do. Be happy for others. Be grateful. Keep an open heart. Don’t be jealous or negative, or identify yourself only as a patient or a victim. Find out who you are, and love that person. Don’t compare yourself to others. Comparison is the thief of joy. Everyone is fighting their own battles, everyone has their own problems. Yours is arthritis. Theirs may be something else, something that you know nothing about. So be sure to educate them about your illness and spread awareness, but also forgive them if they don’t fully understand.
Remember, too, that arthritis is just a part of your story. It isn’t your whole story. Your real story is who you are at the core, and it has nothing to do with arthritis.
Another Fault in our Stars quote that I like: “Pain demands to be felt.” And that’s the thing about pain – it does demand to be felt. So do let yourself feel it, just don’t dwell or wallow in it. I’m not sugar-coating this illness, or denying that pain is miserable. But you can feel so much more than that. You can BE so much more than that. You are more than your illnesses, you are stronger than your pain, and your life is more than the life of an arthritis patient. This is a beautiful, beautiful life, so live it. Live it as best you can, where you are, with what you have. And just do what you can do, when you can do it.
I want you to take a second to write down a dream or a goal you have, big or small, that you want to achieve within the next year. Include your email address or your parent or guardian’s email address. You can give them to me and I promise that I will check in with you a year from today to see if you’ve at least started on your journey to your dream.
Don’t let arthritis consume you or stand in the way of these dreams. Please. You choose your thoughts. So choose positively. Choose wisely.
After all, you have arthritis. It doesn’t have you. So I ask this: don’t bench yourself from the game of life. Be the champion you were meant to be.
PS: If anyone wants to find me on Facebook or Twitter, just search “Arthritis Ashley” and we can connect!”
UPDATE: Here is the video. There is a glitch at the beginning where a few seconds are missing but the rest should be okay!
What’s YOUR weapon against arthritis?
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Arthritis is Unacceptable.
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