Admittedly, I’ve been slacking on the 2016 Health Activist Writer’s Month Challenge, presented by WEGO Health.
In recent months, I’ve had a thyroid cancer scare, multiple biopsies, a minor back surgery to excise a lipoma, and found out that I need a knee replacement and a (lifetime) foot and ankle cast. I’ve also started working on a fundraising campaign for a young woman with mitochondrial illness (learn more here!) and am beginning work with a new organization called the Autoimmune Registry. This is on top of 32+ medical appointments in a 6-week period of time, prepping to pitch two literary agents this weekend, trying to maintain a social life, rest/take care of myself, go to physical therapy, researching stem cell therapy, continuing with my writing and social media work, caring for 5 pets, making Facebook Live videos for you guys, and continuing my board memberships and volunteer work with WearWoof.org and the Lions Club of Robinson Township. So … my point is, I’ve been busy.
So, here goes. I’m going to attempt some version of each writing prompt for days 1-9 in the #HAWMC. Hopefully, I’ll be able to post daily or near-daily after I play “catch up.”
Day One: Getting to Know Me & Why I Write
My name is Ashley Boynes-Shuck a.k.a. Arthritis Ashley. I live with dozens of diagnoses, most of the chronic and incurable nature. I’d say my “primary” diagnoses are rheumatoid arthritis/juvenile idiopathic arthritis, osteoarthritis, chronic migraines, celiac disease, sjogren’s syndrome, an overlap form of lupus, POTS, and a mild form of dystonia. I’ve also had Chiari malformation, for which I had brain surgery, and I have some (possibly congenital) bone and joint deformities, along with other musculoskeletal, mixed connective tissue, and autoimmune diseases. I may or may not have porphyria, I may or may not have thyroid disease, and I’ve got a whole other host of “maybe” conditions on top of all of this, plus milder things like acid reflux, anxiety, and allergies. But what drives me to write about my health is the fact that I simply need to write. It is who I am at the core. I discuss this in recent articles, here, and here. When I was in high school, I was told that, based on the results of a career aptitude test, that I’d make a good social worker. But I was off-the-charts gifted in the areas of reading and writing … and I wanted to be a fashion designer, or do PR in the fashion or music industry, or become a high school English teacher, or be a best-selling author. So, I didn’t go into social work. I tried all of the other routes and have found that, given my health situation, writing and social media are what I’m meant to be doing — especially because I can still help people through my work, even if it isn’t ‘social work,’ per se. So, I write to educate, inspire, and uplift. I write to vent about my own illnesses and health woes. It is cathartic for me, and, the best part is that it helps me as much as it helps you. I enjoy writing and outreach so much that I not only manage this blog and abshuck.com, but I also am an arthritis news reporter for Healthline.com, AND have penned 3 published books, two of which are about my health journey. My writing is helping me turn those proverbial lemons into some lemonade: I use the written word to turn a negative situation into something positive. And I can only hope that it resonates with each of you.
Day Two: My Writing Process
My writing process is just like my health: unpredictable and often unplanned. While living with chronic illness, routine is sometimes hard to come by. I can’t predict how I am going to feel day to day, or even hour to hour. So it is hard for me to keep a set schedule or commit to anything. I love the quote, “I’m not unreliable, my health is!” because it is so true. I do try to set aside time for writing each day, whether it is blogging, composing a Facebook post, or journaling. And if I don’t write, I definitely read all the time. Once I get into a writing zone, though, I could go on forever. Because my writing style is pretty conversational, it’s easy for me to kind of “wing it” and go off-the-cuff instead of meticulously planning everything out. My method of writing is madness… and somehow, it works.
Day Three: Quotation Inspiration
I’ve seen it attributed to many people, so I’m not sure who said it first, but one of my favorite quotes of all time is: “Be kind, for everyone you meet is fighting some kind of battle.” Another iteration of it is, “Be kind, for everyone you meet is fighting a battle you know nothing about.” This sentiment resonates with me because, well, it’s true. Some of our battles are visible; some are invisible. Some people’s struggles are health-related, some are not. So we should treat everyone with kindness and compassion, because you honestly never know what someone is going through at any given time. Another quote that I love is from Kenji Miyazawa: “We must embrace pain, and use it to fuel our journey.” I like the quote that circulates that, “It’s just a bad day, not a bad life,” and, lastly, I love the simplicity of the Robin Roberts quote, “Everybody’s got something” – because, we all do. Some of those things are good, and some are bad. But everyone’s got good qualities, and everyone has struggles and burdens that pop up in this journey of life.
Day Four: Diagnosis Day
It’s hard for me to remember the exact day of my diagnosis because I was a child. But I do my best to recall it in my books Sick Idiot and Chronically Positive. (*Available from Amazon, Barnes & Noble, Walmart.com, Books-a-Million, Half Price Books, Kindle, Nook, Google Shop, Facebook Shop, abshuck.com, and more!)
Day Five: Favorite Social Platforms
I cannot choose which social media network is my favorite. On a personal level, I love Instagram. On a more “professional” level, I like Twitter and Facebook. I don’t use YouTube or Pinterest quite as much, although I do have accounts. SnapChat is fun for the filters, but I don’t use it to post or communicate. I probably interact with the chronically ill community the most on my Arthritis Ashley Facebook page. But if I was hard-pressed to just choose a favorite in general, it would have to be Instagram … I think. That said, Twitter, ironically, has gotten me the most “exposure” and given me the opportunity to chat with some really cool people including Oprah Winfrey, Ellen DeGeneres, Justin Timberlake, Paula Abdul, and more.
Day Six: Superpower Sunday!
This is so ironic as a topic, because this summer, my brother and his wife were out to dinner with my husband and me, and they broached the topic of conversation: “if you could have a superpower, what would it be.” My answer was near-immediate: healing. I’d be a healer! I’d heal myself and I’d heal others. At first I thought I’d want to read minds, but that would probably be awful. The power to heal is a no-brainer, in my book!
Day Seven: The Start of Advocacy
My advocacy journey kind of started by accident. I was vocal on MySpace when it first came out, and I would chat about my bouts with Bells’ Palsy, RA, and (at the time) suspected fibromyalgia. (Later, it was found that I did not, in fact, have fibro.) So, I would write about these things via emails to friends and family, or in the MySpace blog section. Then, Twitter happened. I loved it, and I have always been a fairly open book about my health. One day, the executive director of the local chapter of the Arthritis Foundation contacted me based on a tweet I’d written about RA. He eventually offered me a full-time job as a Community Development Director and I became a blogger for the organization as well as a “patient spokesperson” of sorts. Arthritis Ashley was born, and my role shifted into contract work with the Mid Atlantic Region of the Arthritis Foundation, where I did peer-to-peer outreach and blogged/tweeted about my journey, which led me to go to Capitol Hill with the American College of Rheumatology, advocating for RA legislation in front of Congress, and which eventually caught the eye of Oprah. Once she tweeted me about my work “helping others to emerge from pain,” I knew I was doing something important. And even as that role shifted from paid work to mostly pro bono gigs, opportunities to advocate still present themselves: I’ve written 2 books, gotten a freelancing gig with Healthline, done radio and TV interviews, became a certified health coach, been on a call with the President of the United States, been nominated for several awards, and so on. I share my truth every single day, and while I know it may make some people uncomfortable, I’m not ashamed, nervous, or embarrassed at all to be open about my health journey and to advocate for others with illnesses and disabilities of all kinds. I hope that chances to advocate and spread awareness will continue to present themselves, so that I can do the most good I can for as many people as I can.
Day Eight: Little Engine Post
I think I can … become a best-selling author. I think I can … eventually get healthy enough to be able to exercise more, or even jog. I think I can … get the word out about invisible illness on a broader stage, with a little luck and a lot of hard work. I think I can … show people that not all sicknesses or disabilities are easily seen with the naked eye. I think I can … change the public perception about what it means to be sick. I think I can … inspire others to live a healthier, more grateful, more positive lifestyle of wellness. I think I can … continue to do charity work, serve others, and raise money and awareness for health and animal causes. I think I can … use social media for social good. I think I can … use my love for writing to help, educate, and inspire. I think I can … change minds and erase stigma. I think I can … be a good wife, daughter, sister, pet mom, citizen, advocate, author, and friend. I know I can … continue to share my story. I know I can … advocate for those who won’t or can’t advocate for themselves. I know I can … live my best life and be the best me I can be. I know I can … overcome. I know I can … have a say in my medical care. I know I can … be my own best advocate. I know I can … be a good patient advocate and bridge the gap between patients, pharma, and healthcare providers. I know I can … strive to thrive instead of just simply survive. I know I can … live my life with grace, kindness, and love. I know I can … be grateful every day. I know I can … fight like hell to stay strong and positive in the midst of hardship. I know I can.
Day Nine: My Ideal “Fantasy” Day
My ideal day. Wow. Let’s see. I would be at the beach, or at my family’s camp in Ohio. My husband, parents, immediate family, closest friends, and all my pets would be with me. I would wake up with the sunrise but I would not be tired or sore AT ALL. I would watch the sun rise over the lake or the ocean. I would eat a big, yummy breakfast of bacon and eggs, coffee, and fresh-squeezed orange juice, with a side of fruit. I would go for a morning bike ride on the beach or along the lake with my husband and whomever else wanted to join. I would watch my dogs frolic in the lake or the ocean. I would go boating with everyone (it would have to be a big boat.) While boating, I would relax and sunbathe, read, nap, and maybe do a bit of fishing. I would look and feel great in my bikini, have a couple of beers, and a light lunch. I would be in control of the music on said boat, and we would listen to Justin Timberlake, Beyonce, Taylor Swift, Lady Gaga, Britney Spears, Ed Sheeran, Carrie Underwood, Kings of Leon, Michael Jackson, and Bush. After boating, I would float in the pool on a raft before dinner. In the evening, we would all go to a fancy dinner, where I would get Surf n’ Turf, or gluten-free lobster bolognese, and enjoy some wine or champagne, preferably at a place with live (acoustic) music. Afterwards, I would do some shopping — just a bit — and then head home, where we would first watch the sunset and then all sit around a campfire or a bonfire, talking til the wee hours of the night under a perfect starry night sky. This would be a pain-free, fun, relaxing day, with lots of laughter and love, no sickness, and no sadness. If I had time for a 90-minute deep tissue massage and a mani-pedi, I would throw that in there too. But it would be more about the experiences and the company, the feeling of health and well-being, the being out in nature, than the shopping or the pampering. And in an ideal world, I’d have my Bups back. (I talk about him in this article on page 42, and dedicated my book Chronically Positive to his memory.)
Well … all caught up! … I can’t wait to see what the next categories are. Thanks to WEGO Health for this wonderful initiative: perfect for someone like me who is both a health activist and a writer! Thanks for reading!
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you are a very busy woman!