I really hope and pray that I learn every lesson from this enormous trial and can one day soon use it to help someone who is in my shoes, constantly fighting for insurance to pay for bills that they approved, searching desperately for help and instead getting a universal, "there's nothing I can do for you" health care in America was already broken now it is just impossible. Thank God that in Christ all things are possible!
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.
Friday, February 21, 2014
Day 403
I don't qualify for Vanderbilt's center because my version of autonomic dysfunction doesn't fit any of their boxes. It seems like every time I get a glimmer of hope it is quickly snuffed out. My symptoms are gradually getting worse and worse. It is getting difficult to stay positive when every door you turn to is slammed in your face. Yes I have a rare disease but putting me in a box of being a hopeless case is a cowardly way of saying that I am not worth your time. I will keep fighting until I can find someone who finds my case interesting and wants to get to the root of it before it's too late.
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