PRAISE GOD TAFAMIDIS GOT APPROVED!!!!!!!!!!!!!
I love how God pulls back my layers of doubt and unbelief in stages, the patience He has is unbelievable. I know I am certainly not like this with the boys! Last conversation when I was told by 2 different doctors in 2 different states that 100% Amyloidosis was in my heart, I realized that deep down in my heart I had hoped it was wrong, the diagnosis was wrong, and this was all a test of faith. Yesterday Whitney called me from the specialty pharmacy and told me that the Tafamidis was approved PRAISE GOD!!! That was my first reaction, I yelled out praises of thanks to Him, I shouted, because it was all Him that got this to go through Cigna was fighting everything. Then came that doubt that God brought to the surface, as long as I wasn’t actively being treated then there was still a chance that it was a wrong diagnosis, that they made a mistake, but now its real. God and I had many conversations because I thought I had handled this, I was fully surrendered to walk down this road, but was I? Sure I was as long as I had control, as long as I got to direct which way we went, and if it went to far then I wanted out. Last night came in flows, of praise and sadness. It also didn’t help that my body decided to revolt against me, and my legs and arms were numb and sharp pains.
How many times do we say we are ready to be used by God but have restrictions of when, how much, how long, and want to be the pilot on how it should look? I realize how much this was me!
Tuesday I turn 43 and I wonder what this year will look like for me. I never would of thought that a bucket list was something I would create this young. Many people ask about faith and Amyloidosis. I know that at any given moment God can remove this from me, He can take this gene and make it work right. I also know that He can choose not to, for me, for someone else, for plans that I will never understand on this side. I know medically what this disease looks like I had a front row seat with my dad, I hear Dr. Judge say that my gene is unfavorable, so my faith is never shaken at what God can do, but when we think of what God can do we always think of what WE want Him to do. My making a bucket list could very well be in His plans. What I need to do is just really surrender on this walk, not half way.
I look at my boys and how much they have grown, and how much has been put on them in their short years. While they don’t know the ugly side of Amyloidosis they know their mama is sick, and not a cold thats going away with some rest. And the change I see God making in them, last night before bed Jacob did something dumb, today he writes me a note saying he was sorry and asked me to forgive him. Made my heart melt. In our journal’s we pass back and forth Bradly was on a page that asked him how did he know I loved him so much, and his first answer was I punish him when he does wrong–bless his sweet heart! If through all this my boys grow closer to Jesus yes I will walk this road a million times over! Maybe one of them will be the one that comes up with a cure!
I should get a call today or tomorrow with my cost on the medicine and then we begin. We begin to try and stabilize the gene. I have a biopsy set for the end of September at MUSC, Charleston will be becoming our new travel spot. While on Tafamidis there is lots of testing to watch the progression of the disease.
I pray that God continues to keep refining me, keeps molding me, I pray that during this Amyloidosis journey that I will always be a light for Him. I pray my boys seek Him as we all walk this road together with so many unknowns. I pray the memories that are made are everlasting. I know one thing Amyloidosis taught me is that to truly stop and smell the roses. Thank you God, and thank you for being with me on this journey I couldn’t do it alone!