I had my appointment with the nutritionist yesterday, and it was very informative. I said to Michelle it’s like I am going to battle, this is no longer a choice of if I want to be overweight and just accept my body or not, but do I want to live better, have a fighting chance. I know at this time there is no cure for Amyloidosis, but maybe there will be one soon. And I know a God that can cure anything. Either way I have to get my body ready. And in the back side of my mind, the dark parts that I try to stay away from, the thought is, I have to be leaner, I have to be at a healthy weight because its going to get to a point I will need to be picked up, wheelchair bound and the heavier I am the harder it is. I try not to stay there, I know God doesn’t want me there, but there are times my mind wanders there, and how it all will look like.
Today is rough with my legs for the past 2 hours I have just struggled with pain and numbness, you would think the numbness would take away the pain. Anyway so off track…the nutritionist–low carb said that would like me to stay 120 and under when it comes to carbs, and then fluctuate with days of 75-100. She went over how carbs cause a lot of inflammation, and inflammation can make my sticky nerves angry and progress faster. She talked about meal planning, she must not know me, I have two kids planning some days goes straight out the window, but Shelly (my sister) comes down Tuesday and said she will help with this. She talked about a cheat meal once a week and that helps people stay on track. Onward we go!
Tuesday I meet with Dr. Judge and hoping for a clearer picture on whats next, treatment start and such. Although I found out that the infusions are 274,000 a year! Insuance cant tell me my cost till they have an order and a code, so I have no clue what we will be looking at each month for the rest of my life, but I know God is there and somehow He will work it out. There is a new drug that is in clinical trial phase 3 at the Mayo Clinic in Rochester Minnesota that I have a call into. They pay for you to fly there, hotel, meals, and the drug itself, and there is no placebo so you are guaranteed to get the drug. Its not FDA approved yet, so there’s that to consider against going against something that is and proven to work. I have put it in God’s hands if thats where He wants me He will open the doors for it to happen, if not it won’t. I called Monday so should hear from the Mayo Clinic soon.