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Support, he says you will need support to lean on, its a rough road, but a road that has been traveled. He also said that these treatments were not available when my dad was alive. Paul is one of my favorite people in the Bible, (well besides Ruth because her faith amazes me) but to be a man that was pursuing Christians, to having an encounter with Jesus and then completely surrendering his life to Him! I still remember my encounter with Jesus and I have stumbled almost every step of the way.
Before Amyloidosis and all that it has become in my life, I would of said my faith was like Paul, I could give all the cliche answers of how I would handle a valley, and in my mind I believed it to be true. I wasn’t trying to convince others, but it looks like I was trying to convince myself! While I want to be like Paul, I feel more like Peter lately. When Jesus told Peter that he would deny Him 3 times, and Peter came back with that he would die before that would happen, that was me, Oh Jesus I would follow you into any valley you take me, oooo except this one, this one is too much. But Peter came around didn’t he…..when he saw Jesus on the shore after He told him to throw his net to the other side and fish just overflowed the net, Peter could not wait to get to Jesus, he dove into the water and swam there, that is what I want. Lately I feel like I am walking on water one minute and the next the wind is so loud I am being surrounded by water. Keep your eyes on Jesus, o how I want to….o Jesus how I want to….help me not look at the storm, help me drop my “net” and follow you no matter where that may be, help me be an open vessel to be used…..help my mind and heart connect again……..Help me become Peter…..
I had my appointment today with Dr. Judge. He is a great Dr who knows a lot about current treatment and future treatment that is in the works. He wants me to have a Tcpyp scan to see if Amybolyd is anywhere else beside the heart. We talked about medicine and he gave me 3 options, the one that is easy its a pill slows down the progression but doesn’t stop it. He recommends an IV infusion every 3 weeks called Patisiran Onpattro. This particular medicine turns the gene off, and in some cases there are people who see some turn around. He did warn that any of these treatments are expensive even with insurance, he will also try to have it done up this way so I don’t have to drive to Charleston every 3 weeks. Today he started me on water pills and potassium pills to help with the fluid retention. So there is hope, and you would think I would be focused on that, but my mind is always just dragging me down. What I see is all the money going out for me, having someone have to watch my kids for 6 hours every 3 weeks, life being changed for my health issues. I feel like the anchor that is dragging my family down, so what do you do? He also talked about the need for emotional support through all this, because life will change, low sodium diet, no alcohol, keep levels in line thyroid and vitamin A. I feel numb, I feel exhausted, I just want the world to stop for a minute so I can breath and catch up and just sit and think. Strength is what I am asking for now…strength to get through all this….strength for my family as their whole world just changed….