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  1. J

    What do you say to your child when he says he wishes he were normal?

    You should respond, "I wish I was normal, too." Try to look very sad about what a weirdo you are. I think by making a big issue of this your are basically affirming to him that he is indeed "abnormal." Tell him there are tens of thousands of people with CF, just like him, just as there are...
  2. J

    lung function

    Hello! I'm 24 and have an FEV1 of about 70% when i'm well. Went in to the hospital last week and was down by a little over 10%. On my way back up, though! Yay!
  3. J

    CF: Accepting and Living Your Life with CF

    hm... nice videos (except the last - very stiff and unnatural), but i don't feel like i connect with them.
  4. J

    CF, marriage and depression

    A lot of people say it doesn't work for them but journaling has had an immense positive impact in dealing w my emotions related to cf. i began writing like a mad woman after my diagnosis and it was the only place i had to release my thoughts and feelings. At the time i couldn't yet talk about cf...
  5. J

    HELP! My 10yr old is refusing to do airway clearance

    Time to sign her up for a sport! Let her be active and play! It does a lot to clear the airways!
  6. J

    any parents out there dealing with CF adult children that have given up

    He needs to engage in some kind of normal activity. Having to drop out of school sucks and takes away one more normal thing in our lives. He needs friends and something to distract him from the pain. And he also needs a good way to fully vent how he feels. Unfortunately, if he is in pain I...
  7. J

    CF adults life

    hello, nuca! i'm just 24, and though maybe not completely an "adult," i can tell you things are looking good <img src="i/expressions/face-icon-small-smile.gif" border="0"> i was diagnosed at 16 and had a very hard time with the diagnosis. unfortunately i didn't have emotional support and so i...
  8. J

    Favorite fiction books?

    I haven't read Capote or Grisham.. I'm just gonna throw out some books I have enjoyed. Love in the Time of Cholera, Lord of the Flies, Devil in the White City, Bel Canto, The Intimate Lives of the Founding Fathers, The Spirit Catches You and You Fall Down (that's especially a good one from the...
  9. J

    excited

    wow! that's an impressive improvement!
  10. J

    Ever dreaded a hospital stay?

    i have dreaded every single stay (i hate getting the picc placed), but have never had the option of NOT going when it was necessary. i guess it has helped me to have a big family living nearby so i get lots of visitors. probably also helps that i like being alone sometimes. i like the time i...
  11. J

    Airline travel

    hi there! i've done a bit of traveling, and haven't had much issue with meds, nebs, or vest as carry on. i've taken tobi, pulmo, creons, inhalers, nebulizer and vest all with me, and these days i have cayston rather than tobi, but the rest is about the same (plus a few other pills). i've never...
  12. J

    Cayston users

    i personally (on doctor's orders) use cayston two weeks on, two weeks off because at the end of my month off the cayston i always began to feel noticeably crummy (lots more phlegm and coughing and shortness of breath). i no longer take tobi. i find that cayston cleared me up miraculously the...
  13. J

    Cayston users

    i personally (on doctor's orders) use cayston two weeks on, two weeks off because at the end of my month off the cayston i always began to feel noticeably crummy (lots more phlegm and coughing and shortness of breath). i no longer take tobi. i find that cayston cleared me up miraculously the...
  14. J

    What is your FEV1 Score?

    64% as of early this month. it's down just a little due to a lung infection which has since cleared up.
  15. J

    What is your FEV1 Score?

    64% as of early this month. it's down just a little due to a lung infection which has since cleared up.
  16. J

    Adults please

    haha.. printer's comment is right on point! hear, hear!! i definitely have times when i don't want to do treatments, but i end up feeling crappier without 'em, so that's a big motivator. i'm seeing a therapist to deal with the emotional turbulence in my life and it has helped a great deal, as...
  17. J

    Adults please

    haha.. printer's comment is right on point! hear, hear!! i definitely have times when i don't want to do treatments, but i end up feeling crappier without 'em, so that's a big motivator. i'm seeing a therapist to deal with the emotional turbulence in my life and it has helped a great deal, as...
  18. J

    getting irritated by people who say this to me

    i get that spiel a lot. i enjoy living my life, and when people suggest i shouldn't, i just smile, nod, and let them think they're right, then go out and proceed as usual! i've got a growing list of exciting things that i was "crazy" for doing, and my life is all the more satisfying for it...
  19. J

    getting irritated by people who say this to me

    i get that spiel a lot. i enjoy living my life, and when people suggest i shouldn't, i just smile, nod, and let them think they're right, then go out and proceed as usual! i've got a growing list of exciting things that i was "crazy" for doing, and my life is all the more satisfying for it...
  20. J

    I dont do my treatments

    hey there! i was diagnosed around the first time i went in to have nasal polyps removed. i was sixteen, and i really didn't have the capacity to deal. i HATED doing my treatments and taking my medication, and i would forget to do them quite often. it took me a very long time before i began to...
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