labellavita
New member
My friend recently wrote a paper on cf for her premed class. She asked me to write a "bio" of sorts about dealing with disease. Just thought I'd share it with you all, since you'll know where I'm coming from =)
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Every morning I awake wishing I hadn't. With each breath I take, a part of me longs for it to be my last. While there is still a semblance of the dichotomy within me to fight, it becomse increasingly apparent that the fighting results in nothing but a longer day of suffering. While others wait with bated breath for the next opportunity to achieve their dreams, i am waiting for a single moment to exist without pain. While i stride on and smile accordingly, I am reminded with every short breath that my dreams will exist only in a land of slumber. And in this wicked world of reveries...
I wrote this about a year ago. My will power to continue fighting this disease varies. Somedays I wake up with the determination to achieve the dreams I keep hidden from everyone. Other days, I dont want to move. I dont want to breathe. The pain and humiliation of not being able to perform basic functions without getting short of breath or keeling over from the pain get the best of me. I've been fighting this disease for the past 27 years, but in the last 3-4 years, it has got increasingly worse. I suppose thats what happens with a degenerative disease. Things just stop working. WIth cystic fibrosis, the organs that begin to fail you the most are your lungs, and those in your digestive and endocrine systems. For me, my lungs function at a baseline of 40% normally, while my pancreas refuses to produce digestive enzymes to break down the foods I eat. My liver has decided its not going to work properly either, as the bile is too thich to pass through the mucus blocked ducts. Thanks to a botched "exploratory" surgery 2 years ago, my abdomen is now filled with scar tissue which causes me so much pain i have bouts of throwing up every hour on the hour and spending evenings in the er for severe dehydration. On a regular day though, you would never know this about me. The dark circles under my eyes you could attribute to a lifestyle of partying and lack of sleep. Not to severe malnutrition and the inability to sleep due to repetitive coughing. I do my best to not let this disease effect anyone else in my life; to not let them know the severity of it. I failed miserably in this deceit 4 weeks ago when I ended up on life support due to a basic lung infection I get on a regular basis. Now I'm forced to share my 6 breathing treatments and 2 other physical therapy treatments a day with those I live with. I have people double and triple checking that I'm taking my medications with every meal - that I'm taking every antibiotic and every other medication I have prescribed. The frustration of dealing with this disease is exacerbated greatly with the infantile treatment I receive from people now that they understand that it is chronic, it is deadly, and it is a daily fight. I only hope that when these people see me, they don't see someone that is sick, or that is dying. I hope they see someone who is a fighter - mustering up every ounce of strength she has to battle an unbeatable enemy. An enemy that will one day win, just not today.
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Every morning I awake wishing I hadn't. With each breath I take, a part of me longs for it to be my last. While there is still a semblance of the dichotomy within me to fight, it becomse increasingly apparent that the fighting results in nothing but a longer day of suffering. While others wait with bated breath for the next opportunity to achieve their dreams, i am waiting for a single moment to exist without pain. While i stride on and smile accordingly, I am reminded with every short breath that my dreams will exist only in a land of slumber. And in this wicked world of reveries...
I wrote this about a year ago. My will power to continue fighting this disease varies. Somedays I wake up with the determination to achieve the dreams I keep hidden from everyone. Other days, I dont want to move. I dont want to breathe. The pain and humiliation of not being able to perform basic functions without getting short of breath or keeling over from the pain get the best of me. I've been fighting this disease for the past 27 years, but in the last 3-4 years, it has got increasingly worse. I suppose thats what happens with a degenerative disease. Things just stop working. WIth cystic fibrosis, the organs that begin to fail you the most are your lungs, and those in your digestive and endocrine systems. For me, my lungs function at a baseline of 40% normally, while my pancreas refuses to produce digestive enzymes to break down the foods I eat. My liver has decided its not going to work properly either, as the bile is too thich to pass through the mucus blocked ducts. Thanks to a botched "exploratory" surgery 2 years ago, my abdomen is now filled with scar tissue which causes me so much pain i have bouts of throwing up every hour on the hour and spending evenings in the er for severe dehydration. On a regular day though, you would never know this about me. The dark circles under my eyes you could attribute to a lifestyle of partying and lack of sleep. Not to severe malnutrition and the inability to sleep due to repetitive coughing. I do my best to not let this disease effect anyone else in my life; to not let them know the severity of it. I failed miserably in this deceit 4 weeks ago when I ended up on life support due to a basic lung infection I get on a regular basis. Now I'm forced to share my 6 breathing treatments and 2 other physical therapy treatments a day with those I live with. I have people double and triple checking that I'm taking my medications with every meal - that I'm taking every antibiotic and every other medication I have prescribed. The frustration of dealing with this disease is exacerbated greatly with the infantile treatment I receive from people now that they understand that it is chronic, it is deadly, and it is a daily fight. I only hope that when these people see me, they don't see someone that is sick, or that is dying. I hope they see someone who is a fighter - mustering up every ounce of strength she has to battle an unbeatable enemy. An enemy that will one day win, just not today.
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