Peace-freedom from disturbance; tranquility. That’s the definition of peace according to Webster. Seems so hard to obtain right, freedom from disturbances, they always seem to happen and never at the right time. But yet I am sitting out back listening to God’s creation and watching my boys and I have peace. Amyloidosis is still there, I am still not on medicine to control it, my legs are numb, and yet I have peace. Not peace from the worlds standpoint but a peace that can only come from God and it is amazing!!!!!!
Friday Dr Judge called, and let me just say how AMAZING he is, and how I know God put us on the path. If you ever need a cardiologist MUSC in Charleston and see him! Anyway he called friday and told me that Tegsedi was denied, and in order to do an appeal we needed to do a heart biopsy. So we talked some more and I was ok with it. The weekend was going and I just got this uneasy feeling about it. I wasn’t scared, I wasn’t nervous it was a very uneasy feeling of we shouldn’t do this right now. So I emailed him back and we talked some more, and he agrees that while Tegsedi is his first choice to treat my particular gene because it is so unfavorable, we can try and see if the insurance will approve Tafamidis. Instantly I had a peace that we were doing the right thing.
Tafamidis is a stabilizer instead of a silencer and from what Dr. Judge said is down the road we will need to switch, but for now we can do the Tafamidis. I will need to get a scene evry 6 months and be checked immediately if any changes happen and the 6 months is to watch for progression. He said some people work great on the Tafamidis and some don’t. I know that this is where God wants me today.
So once again we are going through the pre-authorization to see if Cigna decides if I can get more time. I should be worried, but I am not. I have laid it at God’s feet and asked that He use me in all of this! I have created a bucket list of things I want to do, I am working on losing weight so I can run, really run with the boys before my legs won’t work. I am making memories.
The worlds definition of peace is not obtainable, oh but God’s is and its the most amazing peace you can ever have. I pray it stays, I pray that I keep laying Amyloidosis at God’s feet, I pray that I am open to the path He has me walking…I am fully surrender and as I look around the colors are beautiful!
My prayer is anyone reading this finds this same peace, no matter what is happening in life, the world, God is and always will be in control……