For the longest time I thought I deserved this disease because of all the horrible things I've done in life, for all the horrible ways I've behaved. My sister calls that growing up and maybe one day I'll fess up and tell you all about it but for now just understand I have underlying guilt. It wasn't until recent though that I started to feel that maybe this happened for a reason. Title it my calling in life, fate or even payback but this is what I have become.
My name is Jenna. I'm 29 years old and live in Canada. I have neuro myelitis optica or for short, NMO aka Devic's Disease. A little over a year ago it became obvious to me that my life had changed forever. I know that sounds really dramatic (and trust me, I did everything I could to act normal) but the truth is, I was really scared. As things started to unfold over the last year I found there were little or no resources. Last week I attended the Guthy-Jackson Foundation patient day in LA (thankfully found on the internet) and the one thing I kept hearing over and over again from all the patients, including Erin and Chris who I hope to be co-bloggers here, was how alone we all felt in the beginning. We all have a lot of love and support from our families and friends but we still feel/felt lonely because none of them really know what it's like in our skin everyday. So here it is: my NMO Confessions. Whether you're a loved one, a patient or even a clinician, I'm hoping that by sharing my daily struggles, triumphs and unfortunate disappointments I can make the NMO world just a little less lonely.
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