I am not only fighting my body, but fighting my mind as well. I heard from Whitney today, she is works in the specialty pharmacy with MUSC and deals with insurance companies. Cigna has denied the claim for treatment, and want a biopsy for an appeal to even happen. Dr. Judge was not in favor of a biopsy because its invasive, painful, and not always accurate. I remember my dad, biopsy after biopsy and was told they had no idea what was wrong with him. I am going to be completely honest about this disease, I took my dad to Hershey PA to get yet another biopsy, he fell getting out of the car, and I wasn’t able to pick him up, he had stomach issues, and I couldn’t take care of them, he sat in a wheelchair waiting for a nurse because he didnt want his daughter to take care of him that way, and this was biopsy 4. All others they just kept saying we have no idea. Amyloid is a sticky protein that attaches to the organs and nerves but not the whole thing, so if you cut into one sedition it may be a section that Amyloid hasn’t hit yet, it may be a half inch over. I emailed Dr. Judge because to say I am frustrated doesn’t explain what I am feeling.
This is where the fight happens, this morning, I posted about a song about God is faithful, He never promises anything He can’t keep, but my my mind wants to fight that and look at what is happening now. How insurance gets to decided if I am worthy of more time on earth. When my flesh side wants to drive up there with my boys and have them tell my boys that they dont feel like its money well spent to give me more time, to slow down the disease. My side that God is working on and refining it say God is in control He already knew what Cigna would say, He is still working even though it seems like He isn’t. So there is a mind battle going on to see which one will win. I know when I hung up the phone I was just numb, Brad came home for lunch, and let me pause here it always happens at his lunch, lol! When I was told I was positive for the Amyloidosis gene it was on his lunch, one virtual appointment and our life was flipped upside down. So he comes home for lunch senses I am “off” asks whats been happening and I tell him about Cigna, he says nothing because I jump in and say well I am just ready to do nothing no treatment, nothing let Amyloidosis run its course and move on. Bless that husband of mine, he just lets me vent but knows my heart.
This could all be because God wants me to do the trial. Both options are great treatments/trial and I said whatever one came through is the one God wanted me to do. So maybe this is why…maybe He still wants me in this waiting room there must be more for me to learn. Dr. Judge should get back to me today, he is an awesome doctor who usually gets back the same day. Its frustrating have a progressive debilitating terminal disease is hard enough fighting for treatment shouldn’t be that hard. But God is always with me (Matthew 28:20) He has a plan for my life (Jeremiah 29:11) and He is my refuge (Psalms 62:6-8)
While this isnt the news that I wanted, I know I was on a hilltop in this valley earlier and I know Satan wants me as low as can be, I will keep praising the God who created the world, and sit back and watch His plans take hold.