how do you do it.

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Regular Member

Date Joined Sep 2005
Total Posts : 33
   Posted 2/2/2006 2:10 AM (GMT -7)   
hello everyone, my name is olivia i am 18 w. cf i was diagnosed at 12 yrs old. i have posted on here before, but its been awhile. i sit here and reda some amazing stories, and think to myself wow, we have some brave people out there. yes i would love to have some people to chat with about cf. but i recently lost a friend of mine to cf and i went to her funeral and i am afraid of doing that again. i do have another friend with cf also. he is one of my best friends and is 21, him and i r in great with r health, but i am just so scared of getting close to another person and losing them once again. its a scary thought, when they sit you down in that room and tell you your fate. i am usually a very strong person and i am the one to think positive, but lately i feel so far down. my pfts are going up one minute and down the next. my highest that i have known i have been was 98 i felt as if i was on top of the world with that, but soon after i got sick and now im down to 79 i know thats a great number and im sure there are a bunch of people lower then me and on the transplant list, but i still get sad and frusterated too. if anyone has any incouraging words for me... please help... thanks all and hope i didnt offend anyone.

New Member

Date Joined Dec 2005
Total Posts : 12
   Posted 2/2/2006 9:07 PM (GMT -7)   
Hey oppie! I am Nicole and i am also 18. I know it must feel scared to lose someone else that u r close to but no one knows when it is time for them to go. Dont worry about getting down about ur cf cause i know i have alot of ups and downs and sometimes I get depressed aswell. You just have to take one day at a time and know that God is taking care of u. And please talk to me if u want cause i could always use a friend with cf. My yahoo IM name is purplebutterflychick18 and i hope to hear from u soon. Hand in there girl!!

Regular Member

Date Joined Jan 2006
Total Posts : 47
   Posted 2/2/2006 9:26 PM (GMT -7)   

hello there,

when i was 13 i lost my sister to cf. my sister and my best friend. she was only 9. the same day of her death 2 yrs following this we find out my youngest brother is a diabetic type 1 then a year later still the same day my uncle dies in a car accident by a drunk driver then 2 yrs ago the same day once again i miscarry. the 30th of oct is the worst day and the most unlikiest day in our lives. you have to think(it took me to get to this thought some major counsling and major time)that your friend who you just lost isnt fighting the "cf monster" any longer. he/she is out of pain. God said the same thing when he took my sister and uncle..."i cant let them suffer any longer". i dont know much about your case and i dont know much about your story. but i am very very familiar with cf. i just found out about 3 months ago that i have cf as well. and you would think with me being diagnoised late and all that i would have a slightly way milder case however its that simple. ive lost 40 lbs now going thru my second miscarriage and still not able to find the right eneyme. so now there talking about g tubes feb 14th will be my last day im ALLOWED to work. i have a beautiful 2 yr and my case is worseing every week. i am scared of leaving my son. but when you have a deadly disease liek all of us do you cant think about dying. live life one day at time. enjoy life. be that butterfly you were made to be. my dad told me its funny (me and my sister) have this really bad disease but yet we are the kindest smartest happiest people he has ever known. dont dwell on the past but live the past. did your friend take care of his/her self? if not take care of yourself that much more. if your afraid to get close fine take babysteps. one day the pain wont be so much and you can live again but until your fully let your friend go and let them live in gods hanf(sorry im not religious but spiritual) you are putting yourself in more misery. if you dont get close your gonna miss out on some really special unique people. you never know when its your time and when its your time u cant stop it. enjoy what time you have it!!

life is precious and devasting but for every tear and story we live its what makes us who we are!!

i wish ya luck,


New Member

Date Joined Feb 2006
Total Posts : 2
   Posted 2/6/2006 12:07 PM (GMT -7)   
Hi Oppie,
My daughter is 22 and has CF.  She hates going to funerals but does go without viewing the casket.  I can understand your feelings and as a mom I may recommend that you  not get so close to another CF patient because of the feelings you are experiencing right now.  Randi has few CF friends, mostly because of where we live.  In addition, our doctor has always advised CF patients to be careful about being in other CF territories because of the bacteria that could or could not spread.  I am so sorry for your feelings and hope things get better.  Remember that attitiude is everything.
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