WHAT I HAVE LEARNED FROM THIS SITE

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Seana30

New member
What I have learned from the people of this site.................

Number one and most important

MY DAUGHTER IS NOT GOING TO DIE TOMORROW. SHE CAN LIVE A FULL LIFE AND DO ANYTHING SHE PUTS HER MIND TOO!

THAT I CAN CARE ABOUT PEOPLE I HAVE NEVER SEEN, MET, AND WILL PROBABLY NEVER MEET!

THE WAY TO DRY YOU NEB TUBING IS NOT BY TWIRLING IT IN CIRCLES! LOL

THERE ARE MANY PROGRAMS AND SCHOLARSHIPS THAT COURTNEY CAN LOOK INTO IF SHE NEEDS ASSISTANCE WITH MEDICATIONS, COLLEGE SCHOLARSHIPS, ETC.

THAT THERE ARE MANY FAMILIES GOING THROUGH THE EXACT SAME PROBLEMS THAT MY FAMILY BATTLES ON A DAILY BASIS WITH CF

SOOOOO MANY NEW RECIPES THAT CONTAIN TONS OF CALORIES AND FAT! (AND TASTE GREAT!)

THIS SITE TAUGHT ME HOW TO READ COURTNEY'S PFT'S. THE FIRST TIME I LOOKED AT THE PAPERWORK I HAD NO IDEA WHAT IT ALL MEANT!

THAT YOU CAN TAKE A HORRIBLE DISEASE AND LAUGH AT IT AT TIMES!


Seana
 
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NoExcuses

New member
That's so cool.

Let me add to that, if I may....


1. That I can talk about my CF and other's CF and not get horribly scared about my future (I used to avoid CF sites because I was too scared to find out what I didn't want to know..._

2. Talking to other CFers is extremely motivating (Kelly, let's do that exercise blog again.... that was awesome)

3. I had no clue that I had so much in common with other CFers. It makes being "different" normal for me.


Yey <img src="i/expressions/face-icon-small-smile.gif" border="0"> Great topic, Seana.
 
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kayleesgrandma

New member
You are sooo right!!! Thanks for reminding us all about how important this site is to all of us. I am so thankful to all of you for helping me out of the dark cloud that was surrounding me for a year. I found this site by accident--don't know why I didn't find it sooner. Seana--your personal experiences as a mother of a cfr are so important to me. I hope you know that. Thank you for being there for me.
 
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Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Seana30</b></i>

THE WAY TO DRY YOU NEB TUBING IS NOT BY TWIRLING IT IN CIRCLES! LOL
</end quote></div>



So what IS the right way? Usually just letting it run works, but when the air is humid, the moisture gets put right back in.



Thanks for the smile Seana, this site is awesome!
 
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JazzysMom

New member
What have I learned from this site? Hmmmm I learned that people actually think like me....NOW THAT IS SCARY LOL!
 
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Scarlett81

New member
That I spend way too much time on the internet and I have an addiction internet problem..........

all joking aside-i learned that beyond the country we live in, family we have and language we speak-we all are the same in that we have the same fears, hopes and wishes. and i notice that cfers have a very good sense of humor!


maybe from all those movies we've watched from being laid up sick all those times!
 
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Diane

New member
I myself learned a Lot ! Some stuff i wanted to know, and some i didn't. Many times i have come on here and had a good laugh , and there are times i've cried . The best thing i get out of this site is knowing i am not alone in this fight .
 
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thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Seana30</b></i>



THE WAY TO DRY YOU NEB TUBING IS NOT BY TWIRLING IT IN CIRCLES! LOL

</end quote></div>







So what IS the right way? Usually just letting it run works, but when the air is humid, the moisture gets put right back in.







Thanks for the smile Seana, this site is awesome!</end quote></div>


Just let your compressor run for about 10-15 mins after a treatment with the tubing attached. That way all of the moisture (or at least majority of it) will be pushed out. Aside from that, there's nothing you can do, because you can't boil the tubing, it will melt. Just try to keep it in a cool area so that you'll have minimal moisture build up.
 
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