HealingWell
Search Close Search
☰

hello..i'm a newbie...

Support Forums
>
Cystic Fibrosis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/25/2007 11:16 PM (GMT -7)
hi...name's deirdre.  it's only been about a year and a half since i was diagnosed with cf.  I'm a freshman in college and finding it very difficult to face the reality of this disease by myself.  I've been looking for other "cfers" to talk to because I have never met anyone else with the disease, and I have sooooo many questions.  anyway...i'm not just new to this world of cf, but also to that of chat rooms.  So..i don't exactly know how this works, but i would appreciate any help from anyone patient enough to answer some of the many questions i've got.
Posted 3/26/2007 1:08 AM (GMT -7)
Hey, finding out about cf is hard but you'll come through =). I'd love do help, talking to other cfers is good you really can relate with one another, what would you like to know?
Posted 3/26/2007 8:09 PM (GMT -7)
well...i guess one thing i would really like to know is how other cfers explain what cf is.  i've heard people try to avoid explanations, i've heard some just say it's "like asthma", but i want to know how to explain - and it rather painlessly.  that is, what's a simple way to describe cf that won't freak others out too much?  or, hell, how does one explain it, period?
Posted 3/27/2007 7:10 AM (GMT -7)
Well.. I wouldn't be the best person to answer this question since I hate telling people so I usually avoid it, but when I HAVE to tell someone about cf I tell them that I have a genetic diesease which is NOT CONTAGIOUS and I have phlehmmy lungs and I have to take a lot of tablets otherwise I'll get sick. People will usually look it up on the internet or in books and read about stuff that may not really apply to you so it's important to say that every case is different and not to worry about you. I told my friend who I felt like I really trusted so I told him and he went in the library at school and looked in like 30 year old encyclopeidas and then got really worried about me because it said a lot of really severe symptoms and that living out your childhood wasnt likely. But cf medicene and technology has really developed since then so I had to explain to him that the life quality and expectancy is a lot older nowadays. If your comfortable with it, encourage them to ask you questions if they have any, that way they won't get too worried about stuff they read on the internet or hear from other people.
hope that helped
audz xo
Posted 3/28/2007 10:55 AM (GMT -7)
yo.  thanks for your advice, i agree that it's important to emphasize just how different individuals' symptoms can be. so, on another note, i noticed you have a myspace.  would you mind if i added you as a friend?  you don't have to, just thought i'd ask.  anyway, my name is deirdre, just so you know.  good to sort of meet you. haha.. and thanks again for your advice. :)
Posted 3/28/2007 8:30 PM (GMT -7)
Haha, yeah you can add me =) thats why i put it there lol
Posted 4/2/2007 12:42 PM (GMT -7)
Ok here's the bestest (haha my favorite word) advice I can come up with - Avoid other CFers and ppl who're sick. You're more likely to "share" lung bugs with eachother and then no one ends up happy. My folks stop people at the door if they're sick - they dont even come in the house. Sometimes I think a bubble might be easier! LOL Do your physio, take your pills, and STAY ACTIVE! Infections set in quickest when we're inactive. So even if you're almost dead, get up and walk a few feet. A few feet today, a few more tomorrow, soon you'll be walking the block. Activity is key.

I'd be happy to answer any questions you have if you want to talk. You can email me at: abiance@hotmail.com

Have a good day!
✚ New Topic ✚ Reply