I can not sleep, my body is fighting me on all levels tonight and my mind keeps racing. I had my appointment on Thursday with Dr. Judge, and it really didn’t go how I had hoped it would. They found no amyloid in the 3 biopsies they took, he was not surprised because he said it is like finding a needle in a haystack. I was, while I knew how difficult it would be to find it, I was sure that God would make it happen, but He didn’t and I am left wondering why. Dr. Judge said we could just keep cutting the leg up and keep looking for it, but thats not very reasonable, and without solid concrete evidence the pain and neuropathy is amyloid and not diabetes the insurance has dug their heels in and will not pay for a silencer. There is a trial that is coming up in January at MUSC and it is a silencer study, the downsize is that I could get a placebo the upside is that I dont have to stop taking my Tafamidis which is a stabilizer for Amyloidosis while doing the trial, so in reality I am out nothing but a lot to gain. Even if I am on the placebo when it comes out I would be first in line, so he is sending me info to them and they will be in contact with me. I asked about the diuretics and if this would be a lifetime thing, the answer yes. My heart can squeeze just fine right now but it can not release, so all that fluid needs to go somewhere and it backs up into my lungs, stomach, and legs, and without the fluid pills I run into just weeping fluid again. He said that my heart is very tired, that it has been working harder then it should be fore awhile. He gave an explanation on Amyloidosis that made it so clear, imagine my liver producing super glue, and that super glue is traveling to all my organs, nerves and GI tract and setting there, it makes things hard to work. Amyloidosis is super glue, I get it but I don’t like it. He made mention of another diabetes medicine that also helps the heart out, and was going to forward that info to my family dr so we can look into that. I am also to be on a very low sodium diet to help out with the fluid.
Right now I am struggling to breath, everything I eat sends my stomach into full revolt that if I am eating I am not going anywhere and if I am going somewhere I do not eat, my legs feel like they are being placed next to a fire, and lately my hands have started to cramp into weird positions and it takes a few minutes to relax and go back to normal. I just took my diuretics and praying they work soon, so I can get some relief. I was so certain that amyloid would be found, I knew how difficult it would be but I was so sure God would answer they way I had wanted, and I am reminded of this verse. This life is a race, how will I finish it, with questions or with trust that He has a plan. Maybe I am meant to get into this trial for someone else to see my journey maybe its for me to learn to trust Him, because being on a silencer would I trust that He is in control or would I trust the silencer. I know what I pray for, and mostly it is time. I know that my gene mutation is not favorable, I pray for time, but not only time, but memories. I pray that my life points to Him in all aspects of it, the good, the bad, the ugly and the scary moments.
6 days till Christmas, I am finally done shopping, most of the presents are wrapped, and I just want to enjoy this upcoming week with friends and family. I dont want to think how my heart is giving up on me, my legs dont want to work, and my stomach hates everything and anything. Most of all I want the thoughts of “is this my last Christmas “ to leave my head.
The results were not a surprise to God, and I am trying to trust where He is taking me on this journey and throw away the plans I have for it. It is hard but I am trying. I keep this verse on repeat so I remember why I am even here…..finish the race…….