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  • Click to view janhillmann's profile
    Posted January 18, 2014 by
    janhillmann
    Location
    Kalamazoo, Michigan
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    Living with West Nile, Stiff Persons Syndrome and how I have come to acceptance

     
    I live with a progressive autoimmune disease, which I believe is an effect of Neuroinvasive West Nile Virus I experienced in 2003. This autoimmune type disease is called Stiff Persons Syndrome. This syndrome can tear muscles, break bones and leave you in horrible pain!

    I started out writing this book to get my thoughts on paper and to make sense of what has happened to me, and what I deal with on a daily basis. It was very therapeutic to write down and organize my thoughts on dealing with a chronic illness and all of the emotional struggles that come with the physical illnesses. What started as my story soon appeared to also be a story that might resound with anyone dealing with an affliction. The affliction may not be the conditions I have, but something that anyone might be a struggling to deal with. I am a forty three year old, who has been married to an outstanding husband named Dan since 2002. I am a mom of a fourteen your old son named Branden who is my pride and joy. I am the step-mother to my precious fourteen year old step daughter named Kylee who, despite her age, I admire her strength. I have a family I am close to and am close to Dan’s family as well. I feel blessed that I am surrounded by loving people whom I can always turn to. I have found my relationship with God, Jesus, and the Holy Spirit within the past nine years and my relationships grow stronger daily. I was raised Catholic, and that gave me my foundation, but I left the Catholic Church soon after high school. I am not perfect, in fact, I am far from it. I am a work in progress, and in the end I just want God to be proud of me, his child. I want to leave behind two children whom the world will listen to, as they both have so much to offer. We’re all in this world together and if sharing my story will provide inspiration to another, it’s all worth it to me. There is a lot of help out there – from finding good doctors, a good church, good family, good friends – that can help anyone facing an affliction. Writing this story was a huge benefit to me mentally and physically. I am no longer carrying around all the fears and thoughts I have lived with for ten years; I’ve released them. Of course I am human and at times need to remind myself of what the right thing to do is, because, at times, I still get angry. At the times I still feel broken, it is those times where I need to remind myself that Jesus carried that cross, was beaten, crucified and died. Jesus did this for us to have eternal life. At times I physically hurt, but thinking of Jesus’ journey He made for me, and for you, makes my pain a little less significant and a bit easier to deal with.

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