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I am doing a Bible study online it’s a book by Lisa Terkeurst called It’s not supposed to be this way. I am only 2 chapters in and I feel like she is speaking directly to me! One of the things she said that stuck out to me was “if our souls never ached with disappointments and disillusionments, we’d never fully admit and submit our need for God.” Satan likes to keep me in this loop, as if I am in a test and if I trust God just the right amount that Amyloidosis would just be a faint dream, a misdiagnosis, a miracle cure, anything but where we are. I know in my heart thats not true, I know what she wrote is true, I know that this valley is making me lean on Him like I never have before. I created a bucket list of things that I want to do, my legs have gotten worse in these past 6 months and some of these things include walking, some are small and simple watch the sunset and sunrise over the ocean with my family. Memories thats whats so important to me right now. I know we are all dying, but if we are honest we all imagine growing old, I am 42 and once diagnosed the survival rate is around 5 years.
I called Whitney and the insurance company wanted to speak directly to the doctor, and after that it would 24-48 hours and a decision would be made, obviously if they deny it we will appeal it. So more waiting, and more anger that seems to just settle so quick. Why do they get to decide, God knows God knows..thats what I keep trying to tell myself.
I talked to Janna from the trial, they just got my medical records and she was going to talk to the team today, and will call me at the begining of the week. I did find out that if I fly out there they also pay for a companion to fly with you, so that was a plus because I was worried about flying myself if Brad can’t come with my stumbling and dropping things.
Tuesday night during study during prayers people asked how I was I avoided it because I was just in a bad place. After the study before we closed they asked again, I let out my frustrations and cried over how I expected life to be, how I feel like I am draining our family, it’s always me. I guess conversations were had without me about helping me out. They asked I didnt answer, they asked again and said it had been 24 hours. I am not on that likes to need help, I am not one that likes to need others for things, and God and I went back and forth about it. If it was laid on hearts of more then 1 who am I to stop it, but why does it bother me so much. A few reasons my blog is easy I dont see faces that read it, its me behind a screen, putting something out to help gets more personal. I want to be Faye, not Faye with Amyloidosis, not Faye who needs a miracle, not Faye who has a bucket list before she dies. But most importantly it makes it so much more real, here I can stuff it down and pretend it doesnt exist, and maybe thats why God brought it up so I stop stuffing feel it so we can grown forward instead of being stuck here…
God sills me sitting in the waiting room, clearly still refining me…still many lessons to be learned…