Today was a rough day, on so many levels. Fighting with insurance to get life saving medication is almost a full time job. Tafamidis or Vyndamax its used both names will be here tomorrow, and I will start and hopefully this medicine will stablize the gene. Because its not the Tegsedi which silences the gene there is 3-6 month testing forver to watch the progression of the disease. Tomorrow a new “normal” starts and emotionally I don’t know if I am ready. I have been with Brad since 1996, a looooong time, in that time I have had many birthdays, he has never once went on facebook and wished me a happy birthday, yesterday he did, he has taken more pictures of me and the boys in the last 6 months then he did all of last year. This isnt because Brads a jerk, its just not his love language, and by him doing this I can see how this walk is affecting him too. Memories are so important to be made now, because the reality of death is so up close and personal in our space.

Today I went to Trader Joe’s because I am doing this diet and they have amazing things to get. THATS ALL I DID, and I feel like I have been run over, my legs are burning and numb and my arms and hands feel like they have been sitting under frozen water. Today my body is fighting anything I am doing, and today I am just tired. Amyloidosis is just creeping in on all levels of my life, and I just really need a pause button, a moment to breath and catch up. I covet prayers tonight because I could really use them…I know God and I will be talking a lot tonight and I pray I can get some sleep. Tomorrow is another day, for now I will take refugee in the One who can sustain me..who holds the world in His hands…..

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