whats it like?

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Regular Member

Date Joined Jan 2006
Total Posts : 47
   Posted 7/16/2006 8:36 PM (GMT -7)   
hello, i know its been a while since i posted, i been very and i mean very sick lately. something i been hearing a lot from people have been making me think a lot. people been asking me whats it like to have cf. i never know what to say besides i live life to the fullest i can or able to everyday and i try to hide all the sad feelings i have. so what i have done is wrote a song/poem. i was hoping to get some feedback on it before i publish it. so here it is
   what is it like?
what is it like
to live life normal?
what is like
not to take medications everyday?
what is it like
to know you can live to be
80 or ever 100?
can someone please tell me
how is a 20 yr old live??
can someone please tell me
how does it feel to walk outside
not having fingers pointed at you
for wearing a picc
whats it like to go to bed
no oxygen
you can play and not stop b/c u cant breathe
im tired of my life
im tired of living this wayyyyyy
i want to be normal
i want to be old
i want to be the one
whos watching my son get married
have kids of his own
they give me 10 to 15 yrs to live
what did i do wrong?
im not even 25
i didnt ask for this
i didnt ask to be sick
so why is everyone leaving
my side
im scared
i just want to cry
why why why why
i want to be normal
im tired of crying inside
how does it feel
to enjoy life
with no exceptions
to do what
you want to do
to be an actress
ok well thats part of it i cant finsih it with my tears
so i hope ppl who are parents of a cfer can somewhat understand the things that go thru our heads we may have what ppl call big hears, always smiling but inside were scared,were holding on with everything we have. we get tired of being picked on of people stop talking because were sick.i wish for some many things but i cant do any of em. they said the disease is really getting bad and ill be luck to reach 35 but i always smile i always laugh and when im in bed and my son and father are asleep i do the opposite i cry wondering will i see tomorrow and i pray asking why? what am i being punished for? i wish i had my sisters strength b/c im barly making it if it wasnt for my son who knows i prob would have already given up.

Sea 2
Regular Member

Date Joined May 2006
Total Posts : 69
   Posted 7/16/2006 11:32 PM (GMT -7)   
Sorry you are feeling so sick. I am a gran of a small baby with cf. Your poem tugs at the heart strings.

Sea 2

Regular Member

Date Joined Nov 2005
Total Posts : 36
   Posted 7/22/2006 11:57 PM (GMT -7)   
okay, I cryed while reading your poem. mostly because it looks so silimer to poetry I have written. there is nothing like telling somone you have CF, and the only thing they ask is "when are you going to die?" people do ask how it feels, but there are so many differend levels to living with CF. fist is the pain, sometimes you lungs hurt, lungs colaps, I have bad intestines, and they like to randomly stop, causes great pain, I have scienus problems, and diabeties, liver disease, everything that goes with it. it hurts. but then there is the emotion, the guilt of not being the child your parents thought they were going to have, taking time and attention away from your sibilings, haveing to spend so much time in the hospital, not commiting to anything because you don't know if you will get sick. and then there is haveing friends with CF, watching them die all around you, and leaveing you, still here doing farly well. how can you take all that and make a "normal" person understand any of it? that is somthing I have been strugling with, but just as hard for them to understand our is for us to understand their lifes. to go to bed knowing that you will wake up well and happy in the morning, for your bigest problem to be weather or not you should break up with your boyfriend, or what movie to see tonight.
maybe some day I will get the courage to post my poetry here, but for now, it is just mine.

Regular Member

Date Joined Apr 2006
Total Posts : 105
   Posted 7/24/2006 5:48 AM (GMT -7)   

Faithful, hope you are doing better.

Thinking of you :-)

Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss

New Member

Date Joined Aug 2006
Total Posts : 16
   Posted 8/14/2006 12:16 AM (GMT -7)   
I know exactly how you feel. I have CF too, and a few people have said some pretty horrible things to me. I'd just like them to be in our shoes and see how they like it.

New Member

Date Joined Aug 2006
Total Posts : 16
   Posted 8/14/2006 12:16 AM (GMT -7)   
I cry when I think about it too.

New Member

Date Joined Oct 2006
Total Posts : 6
   Posted 10/1/2006 9:11 AM (GMT -7)   
sad   I cried when I read that. I often feel the same way even though im only 13 i find myself wondering if i will be able to achieve my dream of being a docter.

New Member

Date Joined Oct 2006
Total Posts : 6
   Posted 10/1/2006 9:23 AM (GMT -7)   
I hate it when kids make fun of me. i have picc line often and they say: What happened to you? really snotty like.And when i ask to go to the bathroom during a test and no one else is allowd to go, but the teacher lets me go they say: What makes you so special? they make fun of me because i have to got to the doctor alot and saying: why do you get out of shcool so often?  my best friend tells me she admires me for my strength. I just sort of smile and say i just take it as it comes. She tries her hardest to understand and i love her to death, but she will never get it I would like to talk to you more so email me please at: cookie_cutie_h8@yahoo.com 
If you want a rainbow, you gotta put up with the rain. - Dolly Parton

Regular Member

Date Joined Oct 2006
Total Posts : 24
   Posted 10/4/2006 4:34 AM (GMT -7)   
I know exactly how you feel aswell, made me cry too. It's weird how you can't really explain how it feels to live with cf to someone who doesn't have it, they'll never know how it feels.

red emily
New Member

Date Joined Nov 2006
Total Posts : 5
   Posted 11/20/2006 5:53 AM (GMT -7)   
i also cried reading your poem, but i do not have cf. my boyfriend has it, and since we've been going out it's got much worse. while i will never know what it is like, of course i have tried. it is also hard to be in love with someone who you know goes through all these emotions and feels all that pain.
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