A CF Mum, Nth Carolina As I sit here reading your site I can hardly see to type I am not a person who cries often but the things everyone is feeling is heart breaking. I try to act like everything in my life is fine. No I don't have CF, my daughter does. I don't want here to feel the pain everyone is feeling. This site is so real compared to anything eles I have ever seen. This is the stuff I want to hear but no one tells. Thank you for that.J.Berg M/36 I tried to be peculiar Haunted thin and shiny white But i am born with stains I almost forgotI wanted to be witty a sparkling personality But it takes...... Genes and inheritage and that, i dont haveand it takes hundreds of years to hide the faults i am light years away bruised and cross eyed and it burns like chlorine like sored lips like third graders get When everybody listens to you Can you protect me?I wanted to escape from myself Cut loose my insufficience But the stains…i almost forgot Already doomedI wanted to be intellectual, widely travelled, so young But the hereditary weighs heavy Genes and heritage Everything was a mistakeand it takes hundreds of years to hide the faults i am light years away bruised and cross eyed and it burns like chlorine like sored lips like third graders get When everybody listens to you Can you protect me? Can you please protect me? ------------------------------------------- Allie F/18 Canada If My Lungs Could Talk If my lungs could talk they would tell a story, The story of every battle I have fought, And everyone that I have not, They would show the scars that the battles leave behind, And the pains that I sometimes feel inside, If my lungs were seen from the naked eye, They would be black and sticky inside , People would believe me when I say , That I was sick the other day, If my lungs could talk they could tell you of my cough, And the weight that I have lost, They could tell about my PFT's and how often I wheeze, And the med's and treatments I receive, If my lungs could talk they would tell, Of my battles and how there hell, If only my lungs could talk ….. By: Allison Reid 18/F canada -------------------- Allie F/18 Canada Normal People Don’t Know U are strong and healthy, you live a normal life, but for me it’s not that easy, everything has a price, I don’t take breathing for granted, like so many people do, for me its like a fight, to last the whole day through. I know what its like to feel weak, and what its like to feel strong, But memories don’t last forever and the feeling of strength is so far gone. Coughing is a daily chore, with meds and treatments and lots more, but without them I don’t know where I’d be, 6 feet under or ill and weak Fuck Cystic Fibrosis, the way it rules my life, no one understands, no one knows the price Losing friends and jobs, that’s the life I live, hopefully someday the cure will come, and change this life I live. By: Allison Reid 18/Canada --------------------- Anonymous "I have Cystic Fibrosis so they say, It's something that will never go away. It doesn't give me much time to live, Tell me Lord: How much time will you give ? Can anyone answer the question I've got ? Will I drive a car and fall in love - or not ? Will I graduate, get married or be alone ? Or will I ever have children of my very own ? A cure, Cystic Fibrosis has none ! My life, a battle that won't be won. I have Cystic Fibrosis how can that be ? What have I done so wrong ? Why Lord..... Why me ?" -------------------------------- Joseph 22/M Plano, Texas here you go.... its a sonnet!!! Life - Some people value life while others do not I rarely use to think about this subject Now it seems to scamper through my mind a lot It could be because my body has been wrecked The numerous times I have flirted with death Unfortunately I can not control it I have learned that some day it will take my breath This disease destroys my organs bit by bit Because of this I cherish every day here Making the best of this life I was given Fighting it everyday with laughter and cheer Several could not take this but I am driven With family and friends helping along the way Until the day my spirit must go away. By Joseph --------------------------Julia, 17/F New Mexico "Who to Blame" It was a regular morning, when I heard my Mom first say, "Your sister has Cystic Fibrosis", I didn't know who to blame.Should I blame the doctors, who told us CF has no cure, or should I blame the nurses, for all the pain my sister has to endure.Should I blame God, for not making her illness go away, or should' I drop to my knees, bow my head and pray ?I want to blame someone, I want it to be someones fault. I want someone I can yell at, and let my anger out.Should I blame myself, for what my sister has to go through ? I know it's not realistic, I know that can't be true.This fight with myself, will never be done. I will always ask myself, what if and how come.Why did you do this to my sister, Whoever you are, why did you put her through this pain? you really went too far. Why don't you get it ~ why can't you see instead of putting my sister through the pain, why couldn't you give this disease to me... ----------------------------------------------------------- Freak On A Leash F/31 Queensland, Australia Poem written one month before transplant while in hospital. My mind is numb, The pain is real Death will come I will not feel I’ve hurt you all By giving in But I need to rest It’s for the best. You’ve watched me suffer You’ve watched me try All that’s left Is to watch me die. My lungs are dead They feel like lead Will they ever breathe? With any ease. ---------------------------------------- Mike S 23/M Florida/USAOh and I just wrote this inspired by this myspace profile.. lol CF for Life.. Im married to Cystic Fibrosis, we met way back in the day, been together through the thick and thin, what more can I say.But that match made in heaven, turned out to be no way, I tried to give her sixty five roses, just to make her go away.Getting worse every year, Bad intentions she had in store, Shes grown into what I fear, and so much more..She takes a hold of me, chokes me till Im blue, and always gets the upped hand, no matter what I do.Im married to CF, she wont pack up and leave, till death do us part, why wont you let me breathe?But there will come a day, when I leave your bitchy ass, Ill be looking down laughing, For Ill be free from you at last.Mike S 2-9-06------------------------------------------------------ Nat F/24 Australia The Following was written by a non-cfer, about meeting a CFer.waited for the day to bring you here as the time it ticks i hold a fear as bright as the sun you are, and sweet like rainand time is held in choking grips that may loosen their hold, slip through finger tips and leave an empty space surround by coldstay awhile, stay at will stay for life to live it still stay a while, please dont go, life is shorter than i'll ever know please stay?how is it that one being can hold such impact with their will for all that life holds to be had in space and time?you are one with fire for life which i'd never know or have as mine which saddens me to know its length is finitestay awhile, stay at will stay for life to live it still stay a while, please dont go, life is shorter than i'll ever know please stay?why is it that you move me? this short time will tell for one who barely knows you you've surely marked me welli feel that i'd be cheated not knowing who you are, the highs and lows of all you've lived and all you've known so far?livid at injustice of the curse that finds you here, that in the split of an instant it brings both life and fearstay awhile, stay at will stay for life to live it still stay a while, please dont go, life is shorter than i'll ever know please stay?the sadness is unbearable, even this fine day, and it is not my place to even ask of you to stay.....------------------------------------------Benson, M/21Livin with Cf From the day I was born MOst of my anger taken When I listened to koRn But relaxing more when Im watchin the porn I don't care if you got shot nine times You're not worth a penny even if you 'fiddy' My mates will be missin me more than faith evans n P.Diddy I've never bin into the fake gangster rap All these losers shouting out 'bbbrrraaap' I'm not selfish my music aint just for me But I wont like my shit spread over MTV I'll do it at gigs like limp bizkit samplin 'check out my melody' Its TV alright but not bout the music They saw a gap then raped and abused it If I was 'da bomb' they'd get hold of me n defuse it I aint got any sympathy if you chose to be a gangster an end up gettin shot Its your fault, but I had to accept what me n my army have got I'm a gangster, yo im a player You make me feel like dancin as if my name was Leo Sayer Now every minute of my life has been worthwhile But jus in case of an emergancy my doc's on auto redial Here's some truth comin straight from my heart But the only problem I have no idea where to start Or even where to end The difference is I don't have to pretend About the pain I am in But give me a beat n my lyrics are slammin Do I ignore it, or tell it like it is? You're like Dr Pepper but without the fizz Cos you're just a puppet to the bizBenson--------------------------------------------------- -------------------------- Matthew Vokaty Dedicated M/19yrs . Everyday I cry inside when I look into my brothers eyes, love, laughter, fun is wiped away by the shadow, the shadow fromo pain that these kids feel inside, but I subside and cry for something I could try, with no idea how its come too, my brothers strong he is tuff, you can try but he'll call your bluff. heart of gold, going down his hard fucking road..------------
The oldest Cfer Alive and shake his hand harder... and anyone with a story.. the more we share, the stronger we become..- ----------------------------------- ---------
Rations:
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CF Foundation Commits $13 Million More to Vertex 03/23/06
A first-of-its-kind drug that could change the course of cystic fibrosis now will advance on an accelerated path to clinical development.The compound called VX-770 targets CF at the molecular level. Thanks to a new $13.3 million award from Cystic Fibrosis Foundation Therapeutics, Inc. (CFFT) to Vertex Pharmaceuticals Incorporated, researchers may be able to evaluate the drug in clinical trials later this year.VX-770 appears to restore the function of the protein that causes CF cells to be defective. Vertex began its CF research program in May 2000 with CF Foundation support. Since then, Vertex and CFFT, the Foundations drug development subsidiary, have collaborated to discover and develop compounds for CF.Post the following link into your browser for the full press release:
http://www.cff.org/UploadedFiles/news/2005_News_Archive/0322
_CFF_VRTX_Poten.final1.pdf**
" FAMOUS COMPOSER " Frdric Chopin may have had CF... http://jag.igr.poznan.pl/2003-Volume-44/1/pdf/2003_Volume_44
_1-77-84.pdf ***The current song being played on this profile for those of you interested is by a lass called Emma Dean, the song is Cemetary Strolling, her site is http://www1.myspace.com/emmadeanband.... Enjoy!!---------------------ONE FOR THE TRANSPLANTERS.... Taking Flight: Inspirational stories of lung
transplantation by Joanne M. SchumOften those given the option to have a
lung transplant, have no place to turn
and learn about the success and
accomplishments of those receiving a
single lung, double lung, or heart/lung
transplant. It can become overwhelming
being in the process of lung transplant
and not hearing how the majority of
people do afterward.
Taking Flight is a collection of stories from
around the world, from recipients of lung
transplants of all ages who share their
stories of success and tell us what they
are now doing in their lives. Taking Flight
is an opportunity to see that organ
donation does work and that lives return
to normal after surgery.
Author, Joanne Marie Schum, is the
youngest of seven children. Growing up in
the Rochester, New York area with CF,
Joanne led a normal life, attending
college, working in her chosen career field
and being with friends and family.
As she reached her mid twenties it
became increasingly difficult to maintain
any quality of life. That is when a lung
transplant became her top priority. She
received a bi-lateral lung transplant at the
University of North Carolina Hospitals, on
September 12, 1997.
Her lung transplant has allowed her to
become involved with many organisations:
volunteering as a speaker; writing for
various CF and lung transplant
newsletters; acting as a board member;
and mentor. Never an athlete in her pretransplant
days, she has taken to biking,
running, walking, swimming and took part
in the 2000 and 2002 United States
Transplant Games. She no longer passes
up an adventure and can be found driving
tractors, motorbikes, and has also flown
in a High Performance Schleicher ASK-
21 Sailplane.
Joanne says her continued great health
will allow her many more days with her
new wings of breath so she can travel,
work, play and enjoy her family and
friends.
Dymocks will be carrying the book in the
near future, in the meantime, copies can
be ordered through:
www.trafford.com/robots/02-0497.html------------------------
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kristin F/24 linden, NEW JERSEY
you know, people always tell me, how can i be soo sick and still look soo good, you know like family, doctors etc. but i have to say, you cf cats are some fine looking folk....
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Just had to say that your profile picture is incredible.. and that its an awesome way to express a statement that proves so true for all us Cfer's!
~*Nichole*~-------------------------------------------------
---------------------------------------------C/- Anonymous Dreamer "I'm tired" Female 20 years old Sikeston, Missouri - I'm not sure how most of us "normals" deal with it (CF) either when you all make it look so easy. Everyone with CF that I know has truely been a blessing. I hope that one day all the "normals" will have the same outlook on life that every one of you do. Always in my thoughts and prayers.-------------------------------------------- -------------------------------" THE BEST DESCRIPTION OF CF :- Written by Mike, M/24, Tempe, Arizona
Saturday, January 21, 2006Why People Have Cystic Fibrosis...
Current mood: thoughtfulOk, alot of people ask me why people have CF or how you get CF so i am just going to post this to let everyone know.Some people are born so cool and awesome in everyway possible that in order to even it out and make it fair for everyone else in the world these people are forced to deal with this disease. It comes from the same gene that makes us all so fucking cool. The gene used to be normal but when the body realizes how special these individuals are and how much they would rule the world and everyone in it, the gene is altered so that these special few dont have such an advantage over the "normal people" of this world. While it is still obvious that these people are so extraordinary they are kept in check by the daily routine of Nebulizers, Flutter Valves, Vest Therapy, Pills, and whatever else is required. The average life expectancy at this point is about 30-35 which explains why the age to become President of the United States is 35 and the only reason they made that the minimum age is because if the age was any younger everyone of the U.S. Presidents would of been individuals with CF because everyone admires them so much and realizes they are so much better than anyone else in the world.Another major reason people have CF is not only cause they are so cool and awesome, but because they are also so hot and sexy. Again since it wasnt fair to the general public that these people be so damn hot and sexy they were given CF which makes them cough up green chunks and other things which arent usually related to sexiness in order to try and tone down their individual sexiness, however this does not seem to work all that well because everyone knows that those with CF are still the hottest people around.Ok i hope this answers many of your questions out there, if not then either you will never understand, or you are just jealous and in denial about yourself not being able to be so cool and sexy enough to have CF. I feel sorry for all you "normal people" out there... I just dont know how you deal with it sometimes. :-)---------------------------------------------------------
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SKeeTa_.. aka.. dA gRim shaW! M/27 Melbourne,, Land Down UnderLay me down, my head to my pillow, I know we are finished, it makes me feel shallow, U hold me from behind, a question you ask, Its whats on your mind, why must we part.. The whisper to my ear, but straight from your heart, Its hard to explain, not sure where to start, No time for one love, scared of missing out, Too much to do, before I depart.. The greater regret, which will it be, The one given up, or the things I will see......------------------- Dustin A.K.A. The Dizzle M/21 The Village of Princeville, ILLINOISThis Cystic Fibrosis is just crazy, Can't tell its got us unless you see. With how many children it effects its a world wide tragedy. For fallen brothers and sisters we've planted trees in memory. Tryin to finde a cure, so we raise millions of Gs.Gettin closer to the link to the cure we're missin. Lived with CF all our life so we are not trippin. Not preachin just teachin, Hoping that people will listen. Hoping that we can bring Cystic Fibrosis to an end.Every day we cough and choke, But no we do not smoke. Our lungs are breakin down, From mucus we're bout to drown. Stomach grumblin and growlin, Eatin all day but not gainin a pound. Astonishing others with how much food we can put down.So if you are fortunate to know someone special like us, We're the kind of people that you can put in all ur trust. Even though we struggle day to day we don't really fuss. We keep on keepin' on, Lookin for the cure cause we must.$*The Dizzle*$------------------------ Jon Vokaty M/24 OAK BROOK, ILLINOIS Everyday I add this life up I realize my lungs and I wanna give up and what happens is to an extreme coughing fits that bring me to my knees sometimes I break down and cry other times i rise and try to the challenge i face in the next day I found god and i now prayI know a cure is coming someday past my life its so far away when i feel the pain and shame Im in a game i dont want to play laughing and acting normal these days for a storm is brewing and coming this waycrazy words i like to post just bieng different from the most some understand others would boast jon you lack your nuts and bolts. there here under these thick clouds that cf have brought into town hiding away my cocky frown I will stand until i drown--------------------------------- Dustin A.K.A. The Dizzle M/21 The Village of Princeville, ILLINOISMental, lost, goin insane. My brain just ain't the same. All day forgettin my real name. The dizzle looking for that fame. Bitch rappers should be ashamed. Whinny lyrics with no game, its lame. Bout to switch it up and freeze frame.Liquor, hoes, cars, and bank rolls. Showin wanksters how shit goes. They're my bitches and my hoes. Me and my clique we're the pros. White boy with a cause tryin to get chose. Spreadin awareness whereever I go.Cystic Fibrosis, a major killah. Taken lives and loads of scrilla. This disease could get no realah. PICC lines and tube feedahs. Got more pills than a drug dealah, yet we stand strong like pillars.Lives full of angst and anger. Always straddlin the line of danger. Explainin to total strangers. The nature of our wagers, with time and medical healers. You rappers think ur lives suck. Let me take away all ur bucks, make you constantly get fucked. Treated like the plague and bucked. Like corn shelled and shucked. But with these lyrics and some luck. We'll find a cure and get unstuck.$*The Dizzle*$-------------------------------- Jon Vokaty M/24 OAK BROOK, ILLINOISTHis group is a team and Cf is our commin enemy we post the problems and skeeta writes the remedy most talk about the vest and other treatments but death and Loneliness hits us the deepest shake off your fears only babies have tearsSince that is settled lets get to the real parts Damn MIke, cant you hold in your farts Oops my bad, I didnt cover my mouth The Public hate it when we cough out loudThe girls in this group have a toxic kiss Who knows what medicine there bugs can resist. I havent found an attractive cfer but now knowing them i beg to differ.. HAHAHAHAHHAHAHH YAHHOOoKeep it alive----------------------------- MIKE S M/23 941, FLORIDACystic Fibrosis Is my challenge, That leaves me gasping for air. I strugle everyday just to catch my breath, Sometimes it just doesnt seem fair. I wake up in the middle of the night, Coughing, and hoping it will all go away. The force of it all leaves my lungs so sore, That I feel tired and worn the following day. While laying in my hospital bed, I wonder if today will be my last, My Family and Friends I will truly miss, Life goes by way to fast. But I must try to stay positive, And keep a focused mind, Work on improving my health, Such as exercising, and any way I can find. Cystic Fibrosis is my challenge, That someday I will overcome, I will fight and never give up, Until my day is done. ----------------------------- Benson (How EMO do I look) M21yeah man i agree cos I know how you feel takin loadsa tablets just so i can eat a meal doin it in public ppl think ur poppin pills they dont know refusin to take them kills sometimes i wonder bout why it was me why ive had to live with F-from-the-C but thinking about it more reviewin avenues ive explored i realise i got choosen cos i got on while others woulda stood frozen even tho my complaint takes over my world i still go out, drink n meet girlslucky for me i have a tight group of friends who'll be there for me when its startin to end thats when i feel bad for havin CF so i live to the full cos who knows how longs left im jus like a clock, tickin tockin away my time but i get down when i think of the friends ill leave behind all i have to do is meet up with them and have fun theyre no better than me when all said and done i do things they do with a little more on top im more concerned bout when the next bomb is gonna drop sometimes i put my cf on another shelf if i had the powers id bring back the twin towers myself what ever happened to live and let live when i meet God i'll be willing to forgive Him for the road my life has taken i know He's there for me an not left me forsaken We're here for a reason, we all have our own fates We'll all be happy when we pass through the big white gatesBenson ------------------------------- Dustin A.K.A. The Dizzle M/21 The Village of Princeville, ILLINOISHere we go again. I have another rap for you . This one is kinda deep but I don't believe its depressing at all..... but thats my look at it. I am proud of this and I think its the best I have written so far. Just read and enjoy.... oh yea big words in this one so if you hate big words I am sorry.Admitted, coughin chokin hard to breathe. Coughin so hard my lungs are startin to bleed. Thats hemoptysis, look it up, its only a seed. Growing resistant to treatment like a damn weed. But thats only the tip of my diagnosis. Shortness of breath, pneumonia, and hymoptysis. Damn, feels like my lungs are falling to pieces. Hope to GOD this shit ain't pseudomonis. The silent killer of patients with Cystic Fibrosis.Weeks of drug therapy, IVs and lab tests. Sittin, doin neb treatments and using our vests. Breakin it up and coughin it out of our chests. Just so this trash does not get our best. Killin it off so other CFers dont get messed. Takes so much energy all ya wanna do is rest.Give me a break from this treatment shit. Each day I discover another line to spit. Slangin these rhymes that are true and legit. Until we find a cure I fo' sho won't quit. The link, the piece of the puzzle to fit. Into the equation of this illness we've hit. So tell ur friends, family, and all you know. We're lookin for the cure to let all of us go. Spread awareness from coast to coast. Help us fight this disease so we can boast. Our dedication and determination is what shows most.$*The Dizzle*$----------------------
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