Waiting is not my favorite, I struggle with the unknown, I feel like I have to prepare for what may be and what may not be. God knows this, and Him and I have had many conversations about me wanting some cliff notes on how this Amyloidosis walk will go, but I haven’t gotten them. So if this was the end of the story, it would seem pretty bleak, but God sees what we need, not what we want. See I wanted cliff notes, an outline, but what He sent me instead was love notes, encouragement points, and inner conversations which I would of never had, or have impacted me like they did if I had the cliff notes version.
My journey started almost a year ago, when I felt off, I remember sitting in the doctors office crying that I wasn’t me. Numbers were off, swelling was happening, food and I weren’t friends yet the weight kept coming, and no answers were to be had. Get tested for Amyloidosis and see if you have the gene, so the test was mailed to my house, and it say here for awhile because I was sure God wasn’t going to send me down that road. I am ashamed to admit I didn’t pray about it, I didn’t ask God anything about it because I just knew it would be negative Welcome quarantine time and my results are in and they are positive. More waiting to see a doctor that specializes in it, because many doctors have never even heard of it.
Brad the man that sat on the sofa for 2 years while the boys and I went to church was the one now giving me the advice on faith, he was the one pushing me forward when I wanted to stomp my feet, draw my line in the sand and say not this God, not this, anything but this. I was angry, I emailed my current pastors, I emailed my old pastors, looking for a way to “get out of this”. Each one had the same answer the same one Brad was repeating to me, Jesus. I begged God to heal me, to make the tests wrong, I begged God to not let this be my road. Dr. Judge wants to put me on Tegsedi its an injection weekly, with weekly blood test and every 2 weeks a urine test, but it turns the gene down from a faucet to a trickle. Great insurance has 7 days to make a decision, a decision on if I die sooner then later, because Amyloidosis is fatal, and they get to decided. Sunday it was 6 days and I still had no answer, I was angry, I was off, more waiting.
There were things going on in my head that I didn’t dare speak out loud, didn’t write about because we all know that if we keep it inside God doesnt know, ha! So I got a text from an old friend I haven’t talked to in a year, just saying I was laid on her heart and she was praying. The text came in the morning, and that day was hard, the numbness, the pain, I was just struggling, that text came from God to let me know He was still there, with me in the pain. Sunday’s sermon, I thinker the whole time, it was as if pastor Dusty wasn’t there no one was, God was speaking to me of the things I have thought but wouldn’t dare speak out loud, because what Christian would ever think these things. But again God was reaching out saying He knows, He knows! But not a He knows and He is ready to leave me, He knows and is loving me though it. He knows and wants to help me walk past it, take refugee in Him. All these things if I had cliff notes wouldn’t of meant anything to me. So where am I today, digging in His word because I can’t do this on my own. I am so angry and don’t want to be. July 28th we will head back to Charleston to have a test done, needles into my muscles and shocks sent to see how much damage is done and then hopefully the insurance will pay for the medicine to slow down the progression of Amyloidosis. I can see a decrease in strength and feeling, I won’t tell you my driving stories, but I am stumbling more, dropping things, and food and I continue to battle. I can eat things day and be ok same thing the next and nope.
I know God is here, I know He is reaching out to me, and I want that block I have to go away, I want to yield to His plan, and I am trying but lately its so hard. I look at legs and see my dads and then his journey becomes intertwined with mine. My sister was here for her annual summer visit and I couldnt help but think of what next year will look like, if in the last 5 months I have decreased this much whats next….. thats too much for my heart to take. What the devil means to distract me, to take me away from God, he is actually drawing me closer, God is using this to refine me, from a girl who begged for cliff notes, is now happy for droplets from God, small notes in my darkest times. More waiting almost 2 weeks till the test and my mind wants to remind me that Amyloidosis protein is just being flowed though my whole body, my heart wants to trust that God has me in this waiting room for a reason……some days are easier, and some I am crying out to Him second to second, but one thing never changes He always hears, He never leaves, He is walking with me, and waiting right here in this waiting room with me……..