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.
Sunday, September 27, 2015
This is getting old
Before getting my sister-in-law, Kim's birthday dinner and cake ready, I had a really bad day. I am so used to being too sick to eat but when I take my nausea medication I feel a little better and realize I am starving. Now for most of you eating is a way of life, it's your nourishment, your energy, your socialization. For me eating is literally killing me. I have to rely upon TPN for my nourishment. I just did something really stupid last night I had a big soft pretzel and some cheese sticks. Something happened that never happened before, and if there was a half decent hospital around here I would have gone straight to the ER. I got so sick my stomach inverted. It hurt insanely bad. But i made it through the day and I think I have gotten back to the point, no food, no matter how good is worth my life. Thank God and my family I was able to get through the day and enjoy my family. I know I am going to be hurting for a while which will remind me not to put any food in my mouth. Right now I have to go take my meds so I will try to write again tomorrow.
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