I have been meaning to update this for a while now with a more solid answer on my life. But reality is there just is not one. My life has been one thing after another since February and very little pause and almost no progress to show for it.
I have 2 very rare genetic markers for Cystic Fibrosis with an elevated sweat test and honestly waiting for my inheritance to pay for the PCD testing. They are curious to see if I carry a gene for that as well. I have been steadily working with my center to keep my lungs and body as healthy as possible. Its hard constant work but its well worth it. I came off my oxygen fully these past couple months. It was hard dedicated work but tho is progress forward my lungs are permanently damaged from my disease.
I have been steadily working with a dietitian this year to. She sure has her hands full with me but I do stick to what she has me do. I am sitting here eating chicken after all. My weight got low and continued to drop the last admit I had, I have been steadily working on gaining muscle. I had to give up my afternoon coffee, garlic, onions, and pasta for now. I will eventually slowly be able to add them back in. I am also drinking the shakes with snacks she recommended as well. I refuse to get a feeding tube yet. Refuse. I want to do this on my own but I also know reality might be much much different.
I have spent way to much time battling insurance companies. Things I need our expensive and we need reform one the insurance side of life but no idea how to go about advocating for it. I know when I speak on it at times I met with backlash but its not their health in the balance either. Its mine. Its people like me the chronically ill. 2020 taught me a lot about how people care for the chronically ill or lack there of. And please people stop sending me anti masker memes. Please.
As for the rest of my life its a mess lol. I am still fighting for my inheritance, its slow moving but it is going. It has been drug out for many different reasons. Said person involved has been told to cut all contact with once this is done and I am so thankful my family advocates for me in that way. Its been a lot to deal with.
Once I adjust to this new med and can get thru an afternoon with out a cat nap, I am gonna learn to quilt with my Auntie. I adore her and all she is. The blanket on my bed is made by her and it really keeps me inspired. I have been steadily cross stitching tho. A bit slower then normal but naps are a must at the moment. I have barely been on my games and if I have its a controller style PC game so I only exert so much energy but how I miss Skyrim. My bestie and most wonderful Spider Maker gave it to me many moons ago when I was sad and it still makes me laugh.
But I guess I should hop off of here. Momma T sent me a hug in a mug tea and its soooo good.
LoveYall
~Poppet
