My sister is here, and she is a great help to me, but our time always goes so fast! On one hand I enjoy our time so much, and on the other I am so frustrated with my body and to know this is the new life, this is the new normal at times is too much for me to swallow. The pain got so bad that Dr. Judge put me on Gabapentin 3 times a day, and it seems to be helping with the constant pain. The numbness, swelling, and electric shocks still come but it doesnt appear to be a constant, which is a great relief, I was an ill person to be around! It’s frustrating when I about drop things, and stumble, I am only 42. I pray we can get this treatment started sooner then later, the drug company is off today and Monday so I wont hear anything till next week. I am told my insurance company will fight this as how its so expensive, not only for the medicine but the weekly blood test, and biweekly urine test. To think this will be my new life, God is the only way I will be able to walk that walk, because to just sit there and think about it is too much to bare. I also have supplements to take, vitamin A when I start the Amyloidosis medicine because it depletes your vitamin A levels, the TTR gene is actually responsible for moving your vitamin A around your body so we slow it down so does the Vitamin. Also there was a study in Germany on green tea extract and helping to slow down the TTR gene as well. It was done 2 times and only in Germany but what can it hurt. So I started taking that, I feel like a I take so many pills now, and they are all HUGE, 🙄, I dont have a problem taking them thank God but could they make them smaller.
So hopefully next week I hear about the medicine and start date, I am just wanting to know the cost for us, it is weighing on my mind. I know God will provide a way, but I just feel like a drain on my family, this isn’t like take this for a few months, this will be forever, or until they come up wth a cure. I don’t know. Amyloidosis and these gene mutation I have isnt supposed to start until late 50’sand I wonder why God allowed mine to start so early. I know I said before I was ok with not having cliff notes and just full trusting Him, and I do but today it would be nice to just see an outline of how this goes. Last night I was up for awhile just thinking of my dad, and I know logically my journey isnt my dads, but when he started with the dropping things and stumbling had 2 years after that, and they were not good. I know he didnt have the medicine options I do now, but you know how your mind likes to just go and sometimes I can’t pull it back. Today my sister and I are going to meal plan, low carb here I come, and hit up walmart to work on the boys room. Praying I have no stumbling issues and I don’t drop anything today, I could use a day where I am on the better side. Reminding myself moment by moment..
” Hear my cry O God……”