By It’s been one year that I have been diagnosed with Amyloidosis, and my dad’s journey flashes in my head when his symptoms started he died within 3 years, and then all I see are the statistics. It’s a constant battle in my head lately. I had testing and bloodwork done fore Judge so we can see how the heart is done from last year. He called right before my Bible study Tuesday night, and I am so thankful he did because if I got the news earlier or the next day I would of wallowed in it, but this way I didn’t have time. There has been a significant decline in my heart function since last year. The medicine I am on is to try and stabilize the gene and prevent more damage, it can take 6 months to a year to show progress that its working, last month was 6 months, he is hoping that next blood work shows the heart stable and no more decline. He is also hoping that the trial comes to MUSC soon, he has many patients ready to get in and get started! I have been numb, and it seems like today its all flowing out and I can’t stop it.
A few months back I created a bucket list, today I redid it with purpose, there are things I want to do with my family and friends, experiences and memories to be made. I want to be able to cross off at least 75% of my bucket list before I cant do those things. I have already changed so much, I get so tired from doing anything because my heart is working harder then it should. I take naps and I HATE taking naps. My legs get so tired and numb, my hands have dropped more things lately then held them and I have burned myself because its too late by the time I feel it.
I had to cut my hair because Covid or the Amyloidosis it changed it, it was so dry and breaking, and I know its just hair and I got this sassy cut, but it feels like I am no in control of anything that everything it just happening and I am sitting here watching it all go by.Some days I feel like I don’t even know who I am anymore. I have been writing journals for each of the boys and Brad for when I am gone, and its all positive and some days I just want to be me, not the me thats wraps all this up pretty. Today I want to scream, today I want to smash plates, today I want to be mad, today I just want to be. I know this is a deep pit in the valley, I know I will get out and move, but today I have no energy to even take another step, today my mind is playing games with me, today I am tired, I am so tired…..
Today I wish I could wrap this up and make it pretty that I am fine, and walking with my head up, but I am not, but I believe this verse, I believe that God is sitting with me in this deepest part of the valley waiting on me to look up and walk with Him……
