Hi Mum to Allie!
I can definately relate with that. I definately agree with the whole god thing. If God was all kind and good, then how could he let this happen? Why would he create something so terrible. I personally believe there's a god, but I think he's a lot crueller than people make out. I also don't believe in the bible. But that's a different story altogether. I used to, but growing up, and trying to work around my CF. It doesn't seem as if it ever could be real.
Cf is very hard to deal with at times, you just want to go out with your mates to a smokey pub, drink your self silly, then just have a hangover the other day. And not feel like your world is crashing down because it feels as if someone is stabbing holes in your lungs, so you can't gather the air.
Does she have a CF team? If so what are they like. I find between them they work as a very good councillor for me, and can tell you the pro's and con's about going out, taking treament. They will have seen a lot of epople with CF through the years and will have seen many different coping stratagies, and stratagies so that you don't feel as isolated from your friends.
I guess these sort of things will be going through your daughters head. It must be pretty hard aswell, as I'm guessing she had a pretty normal childhood? I mean, obviously she will have shown some symptoms, or she wouldn't have been tested for the gene to begin with. It must be so hard going from not knowing what's wrong, to suddenly finding out at 15 that you have a terminal illness.
If she's read up about it, she'll be scared, and she will need some reassurance that not all cases end the same way. Some people don't start to experiance problems till there 40, some have them as soon as there born. It's kind of like a gene lottery I guess.
Back off, but don't, be on the lookout for her, but don't nag her about stuff. I find even now at 21, I'm very defiante against anyone telling me what to do. I know I obviously don't know your daughter, and don't know how her mind see's things. Maybe she needs a different stratagy to me, but this is how things have always been for me. I go along fiine, until someone tries to remind be about treatment. I know what I'm doing and how often I should be taking it. I also know the treatment does help me feel better. A reminder triggers in my head as people getting on at me.
If you want to email me or MSN me regarding any of what I've said, then fire away. My email address is firstname.lastname@example.org
It's true!: Smile and the whole world smiles with you. Frown and the world turns upside down.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Allergies: Any dressing except Mepilex border. Even plasters make my skin blister. Hayfever, Tazocin, Tobromycin, Ibruprofen, Asprin, Codeine, Mirtazapine.
I have a pretty little port-a-cath on left side of chest wall
Post Edited (Darkies Gem) : 5/2/2007 2:20:00 PM (GMT-6)