Recently i bought a book called " Childrens hospital" . I figured it had to have something in there about cf. Well it was about Childrens Hospital in Philadelphia ( where im from), and had a few characters with different ailments. The main character was a 15 year old boy with cf. The characters are real but their names are changed. Basically this young boy knew he was going to die at some point toward the last few chapters, and wanted to have an autopsy so the doctors could maybe learn more about cf and help others not go thru what he did. Well, i learned a few things myself from him in this book that i wanted to mention here. Most of it, you may already know.
~ dont sit idle for long periods of time ( days -weeks) it gives cf a foot in a door you dont want it to have.
~ When you are very sick, try your hardest to eat something, anything....not eating weakens us when
we are already weakened, we can't afford that.
~ Don't give up, don't lose hope, we need to fight with our mind as well as with medications and treatments.
This character in the book was named Mark ( not his real name) and his story touched me , and made me want to fight even harder for everyone i know, from years ago, that have already passed on. If you get a chance to read it, you may want to. It is sad , but it made me want to fight much harder and i am sure
" Mark " would love to know he helped someone more than he thought he would....................
~Diane 39 / cf / diabetes / b.cepacia
~ dont sit idle for long periods of time ( days -weeks) it gives cf a foot in a door you dont want it to have.
~ When you are very sick, try your hardest to eat something, anything....not eating weakens us when
we are already weakened, we can't afford that.
~ Don't give up, don't lose hope, we need to fight with our mind as well as with medications and treatments.
This character in the book was named Mark ( not his real name) and his story touched me , and made me want to fight even harder for everyone i know, from years ago, that have already passed on. If you get a chance to read it, you may want to. It is sad , but it made me want to fight much harder and i am sure
" Mark " would love to know he helped someone more than he thought he would....................
~Diane 39 / cf / diabetes / b.cepacia