This has been my battle cry lately, that while I may suffer a little while this is not the end , this is not forever, and I will be restored!
Amyloidosis can take you on a roller coaster of emotions. On the 3rd I will be on Tafamidis for one month, and we are not seeing a difference, but we are seeing more decline. I am told that it can take months to a year before you see any impact from the medicine, but I can’t see the gene and what it’s doing and that scares me at times. I know lately we have had some really scary times, my hand numbness has gone up to my shoulders and sometimes reaching my face up to the bottom of my nose. My leg numbness has gone into my thighs, and the other night I stumbled and about went to the ground but Brad was right there to catch me. Then there is the emotional side. I know that God can take this away with a word, I know he can restore fully right now, and I also know He can use this path for His glory, and my path can very much go the way my dad’s did and anyone else who battles Amyloidosis. What hurts my heart is when it seeps into my loved ones lives, my friends lives, and my boys. Brad for the last month has been working out in private. Which seems crazy right, why work out in private? Because he saw my dads journey too, and knows how this goes, and knows that one day he will have to be my legs and arms, and wants to be strong enough to do that. That broke me, because in my normal Fayeism I want to fix it, I want to make it better but I know I can’t. I also know the One who can. I say all this, not for pity, but to show God’s hand all in it from 10 years back He was in for right now in this moment.
My dad went through tests, biopsy, after biopsy, chemo, so much to get the diagnosis that helped me today. I know what this journey looks like, we have created a bucket list we want to do before my legs give out. I have always tried to lose weight and would give up because my body holds on to weight like no one’s business, but in a month I am down 20.9 pounds because I want to run with my boys, I want Brad to be able to pick me up when he needs to, and we have bucket list we need to complete. Did I mention my goal is to run, I mean really run with my boys!!
I agreed to be part of a research study for Amyloidosis, all it requires is they come and take some blood. Yesterday the nurse came, and my arms look like I have been in a fight and all she got was 1/4 of a tube. My veins are bad. In the beginning Dr. Judge wanted to put me on Tegesdi and I was offered 2 studies to be a part of, and each time the door was shut, and I couldn’t understand why God would allow that. Because He knew that my veins couldn’t take weekly blood draws that each would require. The results would be faster in those medicines if it was working and I would learn to trust the medicine and not Him. Right now I have to trust that He has a plan for this, for me, for my family, for my friends that walk with me each day, that Amyloidosis will bring good, because I cant see the medicine yet. He knew that. He sent me friends who would set up a go fund me account, to help with the crazy amount of bills we are acquiring with MUSC and medicine.
In lifegroup on Sunday someone asked me if God took Amyloidosis away right now would I do it again, YES! My family has grown, I have grown deeper in God that I thought I could, and I know that there is so much more deepness to go. This simple blog, there are strangers on here I dont know but get to read how good God is, even in the middle of Amyloidosis.
I look back on these 7 months since diagnosis and can see nothing but God’s hand weaving in and out, and that brings comfort when the disease itself wants to tear me down. This verse, suffer for a little while, but I will be restored, just for a little while of suffering.
Dig deep, dig in, because there is so much freedom there. The answer is always…..Jesus!