This is my journey to healing from a rare and ugly disease. I hope to be an advocate for all rare diseases that are often misdiagnosed or worse left to think it is not real.
My Reason
My sweet Elijah has used every wish, every prayer, every day to ask for my complete healing. I knew in 2008 because God told me when I first started getting really sick that things were going to get much worse but He would heal me only when His timing is right and He receives the glory for my healing. For those of you that do not know, I have Idiopathic Gastroparesis caused by a genetic condition known as Autonomic Dysfunction. I am currently on IV nutrition through a central line and on several medications. I had a gastric pacer implanted in 2010 to alleviate some of my symptoms and it worked well for 6 months but my nerves quit responding and I finally had it removed this January. In other words it did get much worse. I start this blog now because I know God will not let my baby's faith die.
Monday, April 28, 2014
Day 467 @NBCTheVoice #faithofachild
If anyone finds their way to this blog via The Voice, thanks @blakeshelton for giving me an avenue to have a voice for those who do not have one for themselves. From my personal experience of going to doctors for 10 years who all say they don't know what's wrong with me, then another 6 years after with a diagnosis and all the way to the top, "There's nothing I can do for you." My heart goes out to those on a similar journey and feel so lost and voiceless. I know some people have eating disorders but I can't even begin to fathom the number of young girls and boys who don't understand why they can't hold down food and trust a doctor that makes them believe it is an eating disorder. There are so many rare diseases that doctors don't have the tools to diagnose or refuse to be bothered with. I know there are many good doctors in this world who truly want to help their patients but cannot. I want to be that voice, to connect researchers with doctors and patients to come to a common goal. I am only one voice, but isn't that how every truly great things come to pass, with one small voice and one giant heart!
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