CF is hard to explain. Many times, I get asked what CF is and my first
answer is typically "it's a genetic disease of the lungs". But really,
CF is so much more than just the lungs.
It involves multiple facets and specialties and areas of the body, lungs,
pancreas, liver,kidneys, physical and mental and emotional. It's coughing
and infections and sputum and struggling to breath.
It's about digestive and tummy aches and blockages and extended times
in the restroom.
It's about food and calories and weight. It's about growth and height and
It's about looking younger than you are and having medical devices
wherever you go.
It's about post traumatic stress disorder and regression and fear and
trauma and blocking things out and not being able to forget.
It's about ports and gtubes and IVs and breathing machines and
vests and airway clearance and
treatments and Meds upon Meds upon Meds.
It's about what's covered and what's not and what hoops to jump
through and who to call and what letters to write and who to prove
what is needed and which option is best and what's available
and what's not and generic and name brand and politics.
It's about cost and coverage and people making rules who don't
understand the disease and hope in things that may never come or
be approved or that you can't afford.
It's about guilt and decisions and stress and complications and
unforeseen circumstances and sleep deprivation and beeping machines.
It's about a small room that becomes your home several times a
year and a lack of privacy.
Its about choosing to continue medication that they are allergic to.
About endless doctor visits and hospital stays.
It's about missing school and 504's and choices to mainstream or
homeschool or online school or home bound. It's about advocating
and research and working together and trying new things and last ditch efforts.
It's about surgeries and invasive procedures and pokes and probing.
It's about endless questions and listing endless Meds and their dosing
off the top of your head.
It's about teaching those around about something lesser known and understood.
It's about trying to stay married and paying attention to your non CF'er and the
guilt of being away and if you should have more kids. It's about working
or not working, being able to afford Meds and vacations and paying bills.
It's about staying the course and not giving up despite being weary and
overwhelmed and depressed and teary and exhausted and fearful.
It's about hope and doing everything you can to not lose it despite
all this disease brings your way. It's about holding your children who's
turning into a young woman and man and wiping their tears and whispering
a prayer into their ears knowing there's nothing you can do to stop a disease
that is so much more than their lungs!