the girl behind the disease

wpid-c360_2014-01-07-11-09-10-251.jpgSo, that’s me. What was that? I don’t LOOK sick? No, I guess I don’t. You hear that often when you suffer from a chronic illness. Be assured, I’m definitely sick. But I’m much more than that.

I’m a Christian woman who loves Christ more than anything. Fun Fact: I was raised Jewish; I love my family with everything I have, each and every one of them. Yes, even the in-laws; My husband is my best friend; I love Star Trek; I’m a computer programmer and web designer; I’m an organization freak; I love all animals and can find cuteness in anything; I wish I could save people from suffering. I do my best by trying to bring joy to those I encounter; I’m passive aggressive. I couldn’t have a list full of positives; too unreal; I love food but usually want nothing to do with its preparation. Although I have my occasional desire to cook and when I do, magic happens. Okay, not always, but often; I make a mean cupcake; I’m shy but friendly; I love puns; i Love dancing;I usually can’t sense tone in written word, so getting away with sarcasm over text is really easy with me.

I was diagnosed with Ulcerative Colitis in January 2011. When diagnosed, I had a mild form of the disease but since then have failed almost all medications and have a fully progressed disease; pan colitis. My entire colon is diseased and each day is a struggle. The only known “cure” for Ulcerative Colitis is a colectomy; the full removal of the colon. This is a very possible reality for me but I hope to be able to manage my disease with diet and medication, eventually. (Update: had a sub-total colectomy April 21, 2015) I’ve spent increasingly more and more time in hospitals but have learned how to smile through this mess. My joy is one thing that I won’t allow my UC to steal from me.

It’s important that people learn about IBD. It is not a rare disease but even many nurses aren’t aware of it or it’s finer details. Awareness creates a demand for research and research gets us closer to a cure. This blog isn’t a way for me to vent. I have been blessed with a wonderful support system. Creating this blog was a challenge for me because I’m a very discreet person. Ultimately, I decided that it is one thing I can do to spread knowledge. If you google Ulcerative Colitis you will get a vague idea of how we suffer. Insight into parts of my life might give many better understanding to the many facets of this sometimes difficult to navigate auto-immune disease.

I only hope that my this blog helps people better understand what IBD is, how to manage it and how to support those with it. Thank you for your time as I appreciate every reader I might get.

Leave a Reply

Your email address will not be published. Required fields are marked *