A.S. Face 1141: Bijillian Dean MacKinnon

Face 1141Bijillian My Story 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. -Bjillian Dean MacKinnon Quebec, Canada

5 Responses to “A.S. Face 1141: Bijillian Dean MacKinnon”

  1. Dear Bijillian,
    Thank you so much for sharing your story with us. What a courageous and beautiful person you are.
    Sincerely Cookie

  2. Hi Bijillian my name is Malcolm from the Uk I have had AS for about 20 years now and have felt pain and depression many times throughout the years.
    Then one day I was searching the Web on AS and found this article which I feel I must share I have tried it and it has really helped me……here is is……..
    Ankylosing Spondylitis (AS) is a form of reactive arthritis that follows an infection by the bacteria klebsiella pnuemonae. The disease only occurs in people who have the HLA-B27 gene (which I do). Although 5% of AS patients do not have the gene – Ebringer thinks that the disease in these patients is actually a different entity. Klebsiella pnuemonae is remarkably similar in molecular make up to the HLA-B27 gene. Hence, when the body makes antibodies to klebsiella, the antibodies also Klebsiella is in the digestive tracts of 40% of people, and tends to be an opportunistic bacteria that creates disease in people whose immunity is lowered.
    If klebsiella could be eradicated from my digestive tract long term, it’s likely that my immune system would register the invader as gone, and would stop attacking the B27 genes. However, killing them with antibiotics doesn’t help, because the bacteria is so prevalent in our community that they tend to return. Sulphasalazine is a drug with (often) unpleasant side effects that is commonly used to treat AS. It kills klebsiella, which is now thought to be the reason for its (somewhat) effectiveness. However, when sulphasalazine is discontinued, symptoms tend to return within some weeks or months, likely because the klebsiella have recolonised the digestive tract. Klebsiella feeds on starch, so removing their food source in my digestive tract can starve/subdue them, resulting in a lowered immune reaction. When we eat starch, some of it tends to remain undigested in the digestive tract, creating in an abundant food source for the klebsiella. Clinical experience has shown that low starch diets help all patients with AS. Lactose is a secondary food source for klebsiella so elimination of lactose is also essential for some people.
    Please Note Aimee check to see your not allergic to Natural Herbs before taking it, I hope it works for you as it has helped me so much,and may the love of GOD be with you and all your family .Malcolm

  3. Your strength is inspiring. Your attitude is to me admired. I am terribly sorry for all you have been through.

    Face #377

  4. XXX ❤

  5. Salut Bjillian, j’aimerais entrer en contact avec toi, je m’implique bénévolement depuis novembre 2012 pour faire connaître la spondylarthrite ankylosante au Québec. Je viens de voir l’article dans le journal concernant le video que tu as fais qui sera lancé le 6 juin prochain. J’aimerais que tu me contacte sur mon courriel : robergemrq@hotmail.com

    FYI je suis Face 1019 🙂

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