I know I am a PWD blogger. It's what I do, it's what I live with, it's what I have. However, today I am blogging about Cystic Fibrosis. Another chronic disease. Another invisible disease. Another disease that breaks my heart. Another disease that a person I love has to live with.
Cystic Fibrosis affects the lungs and digestive system in about 30,000 children & adults in the US. In the world, there are about 70,000. The deal with CF is that a defective gene causes the body to produce an unusually thick and sticky mucus that clogs the lungs. This leads to life threatening lung infections. It also obstructs the pancreas, (effing pancreASS!) which stops the natural enzymes from breaking down & absorbing food. Most people do not know they carry the gene for CF until they have a child who does.
Every day with this disease involves hours of therapy to loosen the mucus that clogs the lungs, approximately 40 pills a day to simply live, having to be home schooled because care is too time consuming and the effort is too extreme, not being able to run, play and act like a child, having to explain to friends or having to hide it from friends, literally struggling for life.
The life span of a person with Cystic Fibrosis typically does not take them past their 20's.
Can you imagine, for one moment, knowing your entire life that you have an expiration date?
Can you fathom, for one moment, the strength it takes to endure living day to day with that knowledge?
Can you conceptualize, for one moment, being the parent or loved one of a person with this disease?
There is no cure. There is no 'being normal'. There is no day off. There is no break. There is only hope.
Usually, like me, people with a chronic disease do not want your sympathy, nor do we want your pity. We put on a brave, strong face for you more than for ourselves. We remain positive and hopeful because what else is there to do? This is not to say we don't get down or sad or frustrated. This is simply to say that our lives depend on happiness, hope and laughter. We enjoy every day to the fullest because we treasure it and know it's fleeting. It's ironic that some people who are healthy abuse their bodies, complain about the littlest things and live unhappy lives. They have the greatest gift in the world! They have what people like me covet! They are healthy.
I don't know, I am ranting because I am upset. When I am upset, I write. So, bear with me. It's funny because I am sick, too, but Diabetes is nothing like Cystic Fibrosis. I want to scream at the unfairness of it all. Literally scream!!! For her more than for me. Disease sucks.
Sorry, I am not hear to lecture or throw a tantrum, I am merely on a mission to educate and bring awareness to the masses.
There are many people with CF who graduate high school, get married, have disease free children and live full lives. This is my hope for this young woman that I adore. This young woman who is beyond beautiful, brave, strong, funny, intelligent and everything wonderful. She is the exact kind of person you WANT in this world for as long as possible. She is the exact person I WANT in the world forever.
I am going to love on every inch of this beautiful soul when I see her in 13 days and I cannot wait.
To find out more, become an advocate or make a donation, please click here: Cystic Fibrosis