When I first started this blog, it was just me because I thought that if I just stepped out on faith that God would take this Amyloidosis from me, that it would be just a misdiagnosis. After I got over my denial of the fact that I had a progressive terminal disease, I let people in and I made a promise to myself that I would write about the good, the bad, and the ugly. Unfortunately today we have the ugly, and I am sure this will be a mess of thoughts because thats where I am. I had my appointment yesterday and there is even more decline from my heart in a week, and he can say 99% that its not Covid but Amyloidosis. The trial is still in the works at getting to MUSC, apparently there is so much red tape and things it takes time, but even if I get into this trial I can still get the placebo. We talked about the insurance and them denying the silencer, we can appeal but it will be the same. Because it is so expensive they have strict criteria for who can get it per the FDA.
So in short of cutting up my whole leg and looking for that piece of Amyloid thats not really an option. So we stay the course, and pray that my heart holds out for the cardio silencer thats in trial now. I was up most of the night and so many thoughts were running through my head. I have been through so much medically, things that should of taken me out a long time ago, so why did God bring me through all that to be here, to fight my body again. To fight this horriable disease. I looked at Brad sleeping, I went and watched my boys sleep.
This journey is nasty, this disease is horrible do I want them to watch that, to have to take care of me at some point because I wont be able to do it myself. I could just see my dad, the pain he went through, remembering the pain watching knowing there was nothing to do but watch him die, and last night i was scared of what this journey would look like for my family, my friends, for me.
It’s a weird position to be in, I haven’t lost my faith but if Amyloidosis was a road I had to walk I would be sitting down and not walking it just looking. The tears wont stop coming, and I hate that. This morning I am just numb, I want to lay in my bed and just be, I want to world to stop so I can catch my breath, I need a pause button. I am tired….not just physically because anytime I do anything I get so exhausted and thats so frustrating, but my emotionally I am so tired, mentally I need a break.
As I am typing this verses, and sermons flood my mind, and I want them to penetrate my heart again, but there is a block, I am just numb. I know this life is a little while, I know we will suffer, I know the best is yet to come, but none of these things today can touch the sadness that is circling my heart, the unknown, the hurt for my family and friends. Prayers are appreciated I can get out of this funk and get back to working on my bucket list, working on what I am here for…prayers for peace because right now thats the last thing I have….