Each individual affected by Ankylosing Spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration for anybody in a similar situation. We’d love your story as well! Send it to us at firstname.lastname@example.org
By Sallie Marx
For my senior project in High School, I am raising awareness for AS by doing a Half Ironman Triathlon on October 27th 2013 in Austin, Texas (1.2 mile swim, 56 mile bike, and 13.1 mile run). I have always been a high goal-setter, and I’m excited for the commitment that comes with this! Ultimately I would like to help find a cure for AS. But more importantly I want to inspire others to know that regardless of what they are faced with, they can get through it, and refuse to allow a label to confine or define them.
After nearly four years I was fortunate enough to find an answer and a correct diagnosis to my medical struggles. However, because AS typically takes many years to diagnose, some people may not be as lucky as I was. It is my hope that with more information and a better understanding of this disease, further suffering will not be prolonged.
Everyone in life is faced with hardships and infinite nuances that set them apart from their peers. Living on an island across from Seattle, WA, being a 1st Team All- State Varsity lacrosse captain and having a 4.0 unweighted GPA sets me apart from others. Eating kale, chia seeds and quinoa by choice (or being gluten-free, dairy-free and sugar-free) also isn’t very common for most 18-year olds. Yet long before my diagnosis on 11/11/11, the most profound thing that set me apart was living with Ankylosing Spondylitis.
As a dedicated three sport athlete, I was comfortable being uncomfortable: sore, bruised and exhausted from competition. But starting in 7th grade, I began to experience unexplained pain in my neck, lower back and gluteus muscles. I wanted to ignore it, but I had a subconscious knowledge that something was wrong and that no dosage of Advil could heal it. I went to over three hundred medical appointments trying to find a diagnosis, all while missing school and suffering with the reality that the activities I loved and lived for hurt too much to do. My life had turned into a clinical experiment with blood tests, PT, OT, Chinese herbs, neurofeedback, biofeedback, acupuncture, counseling, Strain/Counterstrain, deep tissue massage, hypnosis, Qigong and late nights at the hospital, to name a few.
I was extremely fortunate to have the means and the support of my parents and family to keep looking for answers. Countless doctors told me that chronic muscular pain was my own doing; that it was all in my head, and that if I changed my mindset it would go away. They were wrong. After multiple wrong diagnoses, on 11/11/11 at 11am (really), I was given a concrete diagnosis of Ankylosing Spondylitis. Life as I knew it was forever changed.
I am hopeful that in the coming future a heightened awareness of AS will lead to quicker diagnoses. My experiences fuel me forward and motivate me every day. Training for an Ironman 70.3 is a testament to the support I have gained along the way, and a testament to the fire within me that questions the limits of how far I can go.
This is what I am doing and working towards. I hope you’ll support me in my goal to raise $11,000 as I train to complete an Ironman 70.3! Proceeds directly benefit the SAA (Spondylitis Association of America) that helps put us on a path to find the cure.
Feel free to reach out to me with any questions or comments! Thank you for your support!
Other posts by Sallie Marx
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