I decided i would post my speech for everyone to read, because not everyone could make it out to the BBQ. Also if you have a straw around the house, i would like you to try what i asked everyone at the bbq to try. Take a straw and for 60 seconds breathe through just the straw, after 60 seconds you can start breathing normal again. That is a glimpse of what people with cf go through every day.
"After thinking about what I wanted to talk about today, I
decided I would talk about what its like to be an adult with CF. You always
hear about how being a kid with CF its hard to live a normal life because of
all the medicine we take and all the treatments we have to do on a daily basis,
but what you don’t hear about is when that kid with CF grows up to be an adult.
I would like to have a moment of silence to remember all
those that have passed away over the past year. Jason Brady, Amberlyn Fett, Amy
Hearn, Anthony Holloway, Brian Giddens and Chris Odom.
Being an adult with CF you have a lot more responsibilities.
No more parents or caretakers to get your meds ready every day. If you run out of meds because you
forgot to refill them, it’s your fault. And ultimately it’s your responsibility
to take care of yourself. If you don’t do your treatments or take your meds,
and get sick, it’s on you.
Some of us are healthy enough to go off to college and live
a semi-normal life, some of us stay home and go to college while living with parents
in case we get sick, and some of us aren’t healthy enough to make it that far.
Some of us never get the chance to enter the “real” world, and some of us work
full-time jobs. On top of CF we still have the same worries as anyone else, how
will we get income, how will we get health insurance without a full-time job,
do we qualify for disability, or when will we no longer be able to work and
have to go on disability. No matter what we are capable of doing, we all have
our aspirations and dreams. We do what we can until our health takes a hit and
we have to step back and look at the big picture. What is more important? We
all want to live, but it’s our quality of life that we have to think about. We
can keep doing what we have always done, and run ourselves into the ground, or
we can take a step back and take a stand for our health, do what we can to stay
healthy and live a better life. It’s not always what we want to do, but its
something we have to do. We have family and friends to live for. We have people
we love, and when you have people you love, you give it your all to stay
healthy to be there for them. If we give up, or don’t take care of ourselves,
not only are we letting ourselves down, we are letting the people we love down.
Every person with CF is different, you cannot compare us to
each other, and it is a very individualized disease. What makes one of us sick
might not make the other sick. Something that helps one of us might not help
the other. There are advances in
CF that help a certain % of the population, but the down side to that is there
is a % that it doesn’t help.
In conclusion, we are here today to raise money to help make
CF Stand for “Cure Found.” This money will go towards research to improve the
lives of people with CF and hopefully one day it will be a distant memory."
I hope this sparks some thought in everyones mind about what adults living with cf have to deal with.
