is cf all that bad?

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oppie
Regular Member


Date Joined Sep 2005
Total Posts : 33
   Posted 9/19/2005 10:09 PM (GMT -7)   
hi everyone... i have been tryin to read everyones posting as much as i can... but there are a few in here who look at a c.f. as a bad thing... well let me tell you my story!
 
well even before my c.f. i think i had a pretty hard child hood.... my parents were divorced when i was 2 and i saw my father every other weekened... my brother stopped seeing him about yr or 2 before i did. my father wasnt a nice person. so i stopped seeing him when i was 10... and then i was diagnosed at 12 he came for one friggin hr to see me and i havent seen him since... i dont get a b-day card, or a phone call or anything from him.... to him there is nothing wrong with his kids! so just try and be in my shoes for a lil second here.... a single mom we always just barely made it... by no means am i a "rich kid".
 
 
 
 my name is olivia.... i am now 18 yrs old and i have cystic fibrosis. i was diagnosed at 12. so i guess i have  sort of a mild case.well at 12 around i wanna say nov-dec i went to go get my regular flu shot the one i had gotten since i cant remember. ever since that one flu shot my life has changed. well for weeks i didnt want to get out fo bed i just did not feel well was tired and wanted to sleep all the time. so my mom kept taking me back and forth to the dr's and they found nothing wrong. so they thought i might of had t.b tested me 6 times for it and nothing. i then had some other kinds of test i cant really remember. so then finally after about 6months worth of that my ped. had taken an ex-ray of my lungs b/c i had gotten a cough now. he had seen spots on my lungs, told my mom he thought i had cancer. he then had to admit me to university of chicago hospital... 3months of some more test... tubes up my nose down my throat blood test.. and whatever else you can think of i had it. still they foudn nothing. in the begin of nov- dec i was about 5'5-5'6 and weighed 130 pounds... i was now down to 87 pounds. they thought i had a eating disorder, but i would always eat, i had just stopped gaining weight. so now at 12 with all these scary things going on. i was lost, my mom was lost, and my brother was lost. my whole family was lost. FINALLY, on june 1 of 2000 they did a sweat test on me and another blood test. the nurses and dr.'s called it cystic fibrosis... what was is? i had no clue, had never even heard about it. neither did my mom. so while waitin for the test results the nurses came in and out" no you cant have c.f., theres no way with your great medical history." they also kept lookin at my fingers and said that they werent"clubbed." well the results are back. they also tested my 15 yr old brother, just to see, to check. well "mrs pence we need to talk to you the dr says." she takes my brother and my mother away from me into another room. she tells my brother and my mom first about c.f. and of course im in the lonely hospital room crying wondering whats going on... so after what seemed for hrs. my mother, brother and the dr. comes out crying. they walk me down to the room ... and they tell me about this "horrible thing, called cystic fibrosis" im sitting there... lookin at my mom n brother and they r crying balling there eyes out about this horrible disease. i look at my dr and ask her if they r telling me everything about this disease and ask her why am i not crying? why am i not shedding one tear? she told me everything there is to know about it and i responded" ok, well i really dont know why u guys r all sad, im just gonna do everything the dr.'s tell me and im gonna beat it , ill show you all." so i think i started to grow up at 12, and ever since then when something lil goes wrong its not a big deal to me. i am glad that i have my c.f. b/c honestly i really dont think i would be the person i am today!... by all means dont take me wrong... i hate havign to do my treatments and what not but i love the person i am b/c with out it i really wouldnt know how the real world is.... i can see my father for who he is... i can see that i never really did have as many real friends as i thought i did, bc most of em left when they found out... i guess they didnt want to deal with it... but i know who my true friends are... and i also never take anything or anyone for granted.... i have learned so many life lessons with my c.f. and i have gained a few friends i know with cf  and without my cf i would of never met my friend anthony who was friends with my friend matthew who is now my fiance! and without it with that one peice missing i would have never met him. would have never had any of my lifes lessons!
 
 well thank you all for listening... just wanted to show you the good side of c.f.
 
p.s my brother was also diagnsoed with c.f. on the same day i was!
 
 
 
 
thank you all for your time
 
olivia 18 with c.f.

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 9/20/2005 3:04 AM (GMT -7)   

Thank you Olivia for your story on the positive sides for CF.  We certainly do at times need to hear this (especially, since I am a parent to twins with CF). 

I am just wondering....has a genetic physician typed your mutation and do you know what it is?  I do know that dependent on your type of mutation will show the severety of the disease.  My boys have the most common.........Delta F508.

Kathy


oppie
Regular Member


Date Joined Sep 2005
Total Posts : 33
   Posted 9/20/2005 10:18 AM (GMT -7)   
hello kathy... i believe that i do have a the delt f508 i think my brother and i have the same one.... but once i get the chance to ask my mom i will let you know for sure



olivia

CapnRich
New Member


Date Joined Sep 2005
Total Posts : 3
   Posted 9/22/2005 2:43 PM (GMT -7)   
Olivia,
 
You are a true inspiration!  Although I do not have CF, my daughter does. She is now 15 months old and she was diagnosed at birth.  Actually, we were both tested when my wife became pregnant, and found out we both had the gene.  My wife and I are now divorced and I get to see my daughter 1 week a month, and I am saddened to hear your story. I cant imagine a day going by that I dont get to spend with her.
 
Your attitude is the same as mine. Take what you have and make the best of it. There are alot of worse things out there. I can only hope my daughter grows with the same attitude that we share.Happy to here that you have found sombody to love and that he loves you back.
 

CapnRich
New Member


Date Joined Sep 2005
Total Posts : 3
   Posted 9/22/2005 3:04 PM (GMT -7)   

Jennifer,

I think the most difficult part of when I was married was the fact that my exwife and I looked at it in a different light.  If you dont keep a positive attitude, it is really easy to get down and scared. It bothers me a little to read all of these messages, and then when you see one like the one from Olivia, it brings that happiness back again.

I am a pilot for a living and shortly going to give that up to start a non profit business exclusively to support the research of CF.

 


oppie
Regular Member


Date Joined Sep 2005
Total Posts : 33
   Posted 9/22/2005 10:19 PM (GMT -7)   
hello rich.... you sound like one awesome dad! i do miss my dad but what ya gonna do..... i have my mom n my brother we have become a very close family!..... well i wish you and your daughter the best of luck!



olivia

valc
New Member


Date Joined Sep 2005
Total Posts : 5
   Posted 9/26/2005 11:41 PM (GMT -7)   
olivia. you are truly an enlightenment.
my boyfriend of two years was born with CF. On Oct.2 he will be turning 22. :)
He sees life the way you do. He takes things lightly and doesnt dwell on things so much as i do. Im always worried about him cause of course i love him so dearly. But he goes on with his life like anyone else. He never complains about doing his treatments or taking his medication he is always on top of things. Its amazing cause hes a very lazy persona ahha. but wihen it comes to his CF hes good. He doesnt feel sorry for himself and he doesnt hold back. Hes the most out going person. Hes a people person. Everyone just loves him when they meet him. its really crazy. But i admire him for being who he is. There should be more people like you and him.


thank you and god bless.

oppie
Regular Member


Date Joined Sep 2005
Total Posts : 33
   Posted 9/27/2005 3:20 AM (GMT -7)   
hello valc... i really dont know how it is to be the other person in this cases... my boyfriend deals well with my c.f. he hasnt gone to any dr.'s appointments yet but i understand. but thats really awesome your boyfriend is really good on doing his treatments and what not, but the laziness thats him just being a guy.LOL. also you do know that everyone is born with c.f. right? so when was he diagnosed...was he diagnosed at birth? i was a lil lost in what you were trying to tell me in the beginning...sorry. well thanks from your posting hope to talk to you more



olivia

Sylvanis
New Member


Date Joined Oct 2005
Total Posts : 7
   Posted 10/14/2005 2:47 PM (GMT -7)   
Hi Oppie

You are definately an inspiration...YOU GO GIRL!

You see, you took something negative and made it into a positive, you CAN beat this thing, its just what you focus on! Focus on the good, and thats what you'll GET!

All that crap you went through with your dad, thats gonna make you stronger, give you thicker skin (it has me, I have a dead beat dad too, he's never cared about me or anything i've done, he left when i was 8, never had an interest in any of my life)

I believe that when someone has something that hinders them, it makes them stronger, and a better person, more appreciative of life. I truly hope you have an exciting enriched life, heck your only 18 right, your still a young pup!

peace!

-Angela :)

oppie
Regular Member


Date Joined Sep 2005
Total Posts : 33
   Posted 10/15/2005 9:53 PM (GMT -7)   
hey there  thanks so much for your post.... would liek to know more about you
 
oppie

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 10/16/2005 3:18 PM (GMT -7)   
Hello Olivia, it's good to see you!

How's things going? hope your doing well. Stop over in the family room to update us!. We do look forward to knowing how everyone is doing.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


Sylvanis
New Member


Date Joined Oct 2005
Total Posts : 7
   Posted 10/16/2005 7:59 PM (GMT -7)   
Hi Olivia

I had a sister who had Cystic Fibrosis, she passed away when she was 23, I am currently 24. Me and my sister were the same age ( you're probably sitting there thinking...wha...twins??) nope we were actualy step sisters, but we could not have been closer. We met as friends and got our parents together and then they eventually married and thus we became sisters through marriage. I live in Canada, Halifax, Nova Scotia, it's quite nice here... can't complain. I currently work at an animation company as a background painter. Unfortunately just found out that my contract isn't going to be renued, so I'm looking for work after December. ...just in time for christmas! Oh well.

:)

-Angela

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 10/17/2005 6:26 AM (GMT -7)   
Awwww Angela,

Sorry to hear of your job issues. Think positive! when one door closes, another opens, and possibly even better than you had. Keep us posted


Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.

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