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.
Saturday, March 8, 2014
Day 418
Sorry I have not posted in a while I have been too weak to do much of anything but sleep. I have to wait until the 21st to go to the hematologist and have no clue what I am supposed to do until then. There were 2 things we wanted to accomplish this week, get me to a facility that can actually help me with my condition and position ourselves so we can finally remodel our house. Instead we have gotten nowhere on either front except in an even worse situation. Our one tiny bathroom is completely fried. So much our family has had to deal with and the hits just keep coming. Clint planned to do the remodel all by himself, just like he replaced the sewer lines and water lines all by himself with nothing more than a shovel to work with. Just like he remodeled our one tiny bathroom by himself breaking up and hauling out an old very heavy cars iron tub. Just like he tiled and painted the kitchen. Just like he added on a master bedroom and laundry room and closed in for a master bath with not much more than an skill saw a hand saw and a hammer. Mixing concrete in a bucket with a shovel. Hainging and mudding sheet rock all by himself. He was ready and willing to do the remodel with the purchase of some tools and the supplies he needs but because we had to file medical bankruptcy we can't refinance our home to make it livable. Sorry about ranting it's just that Clint does so much for our family and he deserves so much more. He is so amazing and wonderful and sweet and so full of love and compassion. Now what? What are we supposed to do now? I can't even see straight to write anything else or find any more words except please pray whether I deserve this or not I know without a doubt my amazing husband and wonderful kids do not.
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