This is long, and I appreciate anyone who takes the time to read it. It was written by a fellow CFer, Sarah Gaines, and couldnt be more accurate, props to her for being able to put it all into words.. I am teetering on a wire so very thin, between being healthy and being sick, struggling to survive with mucus so thick. Wheezing from the inside out, but the world cant see what its about.Cause From the outside it seems okay,but on the inside I am withering away. I can feel the battle going on inside, but its not like I can just run and hide. My body is constantly fighting this war; breathing begins to feel like a chore. Always feeling hungry, but never getting that fix, 2 enzymes, 3 enzymes, 5 enzymes, 6... A thousand pills I take, but little difference does it make. My pancreas just cant break it down, so the vitamins I am lacking, I cant absorb my food, so my immune system is slacking. The infection rises and my lung function goes, yes, back to the doctor. I already know.But this time your FEV has dropped around 10 percent, the time for home antibiotics has come and went. Another pic line, another drug, another struggle with another bug. Reminding myself my purpose is bigger, and theres more to this life than just getting sicker. To live there is a price that has to be paid, for some of us we pay it every single day. Yes, there are diseases that you could argue are worse, but for me, this is my undying curse. This is my struggle that I am unable to hide, this is my enemy living inside. Medical research is working everyday, to try and take this burden away. The idea makes me feel a little better, but this disease is something I struggle to weather. Yes its true, we have gotten pretty far, but I find myself wishing on a shooting star. Even though the life expectancy is increasing, there are still many lives that are ceasing, and my lung function is still decreasing. The doctors still talk about buying us time, but Im losing my life, and it feels like a crime. Forced to swallow handfuls of pills a day, learn to cope, is really all I can say. Even when you have done all your treatments right, your lungs never fail to still feel tight, lay down and tell yourself it will be alright, swallow some Benadryl to sleep through the night. Take some Zofran if you feel nauseous,But not to much, remember to be cautious. The liver enzymes are always elevated, because the lungs are being invaded. They Give us vanc-a-mia-cine Red mans syndrome has come again.Next is the bactrum and you immediately feel,This battle has suddenly become more real.Every single drug takes its toll, And lungs scars are not in your control.This battle is definitely not for the weak, you are taught many lessons you dont even seek.We walk through society, you cant point us out, but we are still out there have no doubt.There is about 70, 000 people world wide,carrying this secret with them inside.we dont want sympathy, we just want awareness, so maybe your grandkids dont have to bear this. Its called cystic fibrosis and this is real,Dont let it have another life to steal.
Posted on: Mon, 28 Jul 2014 00:34:25 +0000
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