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Note the 'For now' part of the original statement.
My friend Andy’s take on Cystic Fibrosis
“So, today is the last day of the UK CF Week, and I’ve been posting quite a bit about it. I’m going to make this my last post for the week, people may ignore this, people may read it. It’s a stark and shocking way of putting it, but that’s life. Also if it isn’t a trendy or media friendly disease like cancer people generally don’t give a shit. Truth.
Cystic Fibrosis: I could give you the medical definition of what it is, but that surely doesn’t do justice to the realities of it all. Cystic Fibrosis is a disease that slowly destroys your body one day at a time. It causes constant pain and fatigue. Hours worth of treatments and over 30 pills… not every week, but every single day. Your lungs ache and struggle to do, what seems to others, the “simple” process of breathing.
Toxic antibiotics that improve, but yet also destroy your body. Doctors, nurses, and respiratory therapists are considered family.
We reach 18 years old. We’re not celebrating because we are now considered a legal adult, we are celebrating because we are alive. Our bodies are starved from proper nutrients and oxygen. Kidneys fail. Livers fail. Hearts fail. Lungs fail. Bodies fail. People die.
Kids who never got the chance to see high school, teenagers who were holding on to hopefully make it until graduation, and adults who waited endless hours, but never received that call.
Think this is too harsh? Welcome to the life of thousands of people, who despite all of this, keep an immense amount of laughter and positivity in their lives. Welcome to life of thousands of people who deserve a cure.”
I should also add that some credit has to go to Dan Argyle for this! Strong, and very true.
Just some of the medication I’m on. These are the majority of my orals:
Moxifloxacin, Doxycycline and Clarithromycin are the antibiotics, Amikacin is an antibiotic nebuliser, Tranexamic Acid is to stop the internal bleed (due to pressurised burst blood vessels in my lower lungs) and vitamins to replace any that I don’t naturally absorb.
Today marketh the start of ye olde CF WEEK!
29 April - 5th May is Cystic Fibrosis Week (also known as CF week) in the UK. This week is used among the CF community (and all extended connections) to raise awareness and money for Cystic Fibrosis (the condition I have and which I’m currently in hospital for).
During the next week or so I’m probably gonna spam your dash with info about what I have, photos of things I have or do and might even make a video or two about a life in the day of your average teen/young adult CFer!
If you want to start making a difference, search CF Week 2012 online for details of how to donate. You can also click here to add a twibbon to your facebook or twitter pictures!
