[Previous Months][Date Index][Thread Index][Join - Register][Login]
[Message Prev][Message Next][Thread Prev][Thread Next]

Re: [IP] On being Blue

What a great perspective you have. I think we all tend to feel hopeless
at times but being as old as I am and having CF I can say that sometimes
in-spite of all a disease like CF does to you, you keep going like the
energizer bunny. The deference between CF and DM for children is DM is
somewhat manageable and the more you know the more effective you become.
CF is only symptom treated and the more you know just scares you because
if you get to live into adulthood you get things like DM and other
diseases as your body eventually will give into the damage. There is much
hope though,  for both DM and CF in children are being aggressively
studied and treated, and while the mortality rate for CF is still high
the medium age is getting older. For children with DM what a great time
of sorts when the research is being driven for a cure and treatment is
becoming more exact, I am thankful I did not lose my pancreas from CF 10
or even 5 years ago.
I am glad There are machines to pound my lungs and not a loved one, I am
grateful that so far and counting I have 32 years filled with all kinds
of experiences. I grew up in hospitals with other CF kids and I am the
only one left from our group, but because of the unique perspective one
gets when growing up with a disease like CF and it being all you know,
death is not all terrible. I have watched children comfort there own
parents because they and we knew that they were to tired of fighting to
go on, but what you did not see on that hospital floor was a feeling a
defeat to CF, most who died were ready and did not want to go through the
treatments again and again. This is not to say the made a choice to die
but rather did not due the things we all knew as children we had to do to
stay alive. When we were at CF camp we knew who would be back next year
and who would not and so did they, there was no misconception about
mortality and when you had enough.
DM is somewhat harder in a way because much of the time you have a few
years of life before the disease, with CF it is all you know, so you
don't miss what you don't know.
I can ot imagine the pain parents feel, but I now we as kids we rarely
sat around and thought or talked about how horrible it was to be sick, we
talked about what all kids talked about and pretended we were normal and
healthy and princesses and princes etc... and try ot remember it is so
very hard to watch your parents agonize over your disease as a child and
sometimes you get mad and sad etc....but most of the time when you are a
kid with a disease then you are just a KID with a disease
Take Care

Insulin-Pumpers website http://www.insulin-pumpers.org/