My story needs some back-story. Approximately six years ago, I was physically attacked leaving me bruised, my arm dislocated, my nose broken, my neck black and blue and chunks of my hair pulled out. I was tortured and beaten for hours and almost strangled to death. When I had finally given up, I saw my late grandmother standing in the doorway and I got the strength to fight back and run into a room where I barricaded myself in and called 911. I survived that trauma physically, but mentally I was worse for wear. That incident led to a PTSD roller-coaster that turned my life upside down. Not to mention the stress of testifying in court (he was found guilty), changing my identity, changing jobs, apartments, etc.. Being a very positive person, however, I tried to turn it into a positive. I started writing a blog documenting my fight against PTSD. My dad was sick at the time so I joined Team in Training to run marathons and to raise funds against blood diseases. Eventually I was bungee-jumping for fun and completing triathlons in Hawaii. I felt like I was finally healthy. On top of that, I finally figured out what I wanted to do with my life and that was work with children. So I became a nanny and traveled to Sweden with a family. That led to a job at an elementary school where I also met the man of my dreams. We got together and we were quickly married with a baby. Life was, for the first time, perfect! Eleven weeks after I gave birth to our son, I ran a half marathon with my mom in Niagra Falls. A few weeks after that, my husband and I took our baby on a vacation to Prince Edward Island. Within a few weeks I dropped from my pre-baby weight down an additional twenty pounds. I started losing my hair in clumps. I couldn’t stand up right. I couldn’t run far. I had excruciating pain in my chest and in my spine and jaw. I was dizzy, fatigued and depressed. I was very short-tempered too. I couldn’t understand what was happening to me. Why I went from running a half marathon to being unable to lift my son out of his crib. We cut our vacation short so that I could see my doctor. I was sent to many specialists but it did not take long for my diagnosis to be made. A.S. To be honest, I didn’t know it existed until I was diagnosed with it six very long months ago. My first thought upon hearing the diagnosis was, ‘Arthritis? Am I not too young to have arthritis?’ My first emotional reaction was, ‘Thank God it’s not cancer.’ And that is everybody’s reaction to A.S. and a quick snapshot of how entirely lacking we are in terms of societal awareness of this disease. A.S. and all spondyloarthropathies are chronic and incurable. Often the medication used to quote on quote ‘treat’ this disease leave a patient worse off than before. I am not a doom and gloom kind of person either. I am actually the opposite. I have the kind of mental survival instinct that makes me capable of turning any horrible incident into a meant-to-be reasoning. It is basically my super power. Look at A.S.. Sure I went from doing triathlons, raising funds to fight cancer, running marathons, bungee-jumping and sky-diving to unable to work even part-time, unable to open my baby’s bottle, unable to lift my baby out of the crib, etc.. I am in constant pain and agony. My weight is a battle to keep meat on my bones. My hair falls out. I am anemic, hypoglycemic, thrombocytopenic, neutropenic and I can barely run 5 kilometres now. But I can turn this into a gift. Perhaps I would have been working too much and running too much to enjoy my baby’s first year of life? A.S. forced me to stay home and enjoy every second with my son and our dog. I may go a little stir-crazy sometimes, but if it were not for this disease, I would have missed a lot. Your whole life changes and so does your identity. Even the little things change. I fight everyday to keep any sense of pride when I can’t turn a doorknob or open a can of beans. I try to cover my black circles and dress up my muscle-less body to make it look buffer. I try to pretend that I am ok with the fact that after a lifetime of looking for what I wanted to do in life, I finally found it. I wanted to work with children. And for 2 and a half years I enjoyed every second. It’s not a job when you love what you’re doing right? A.S. took that away from me. My other passion in life was working as a coach and volunteering as one to raise funds to fight cancer. I was starting up my own fitness business. I’m trying to fight back, but so far A.S. has stolen that too. My goal now is to take the mental determination I possess and fight this disease by spreading awareness and educating those around me on what it is like so that maybe one day it will be a curable disease. And to make my son my passion and my reason to keep fighting.
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