All of u on this site....

[sarabeth87]

I found this site probably about 2 years ago. Before that I was in denial that I even had CF. I was on oral antibiotics all the time. I've been on Tobi for about 4 years and I have been on pulmozyme since it came out and Albuterol for just about my whole life. Well anyways, one day I was on the net and decided to see of a cysticfibrosis.com existed. Then lo and behold, it did. I found the forums and posted as anon for a while. It was the first time I ever talked to anyone else with CF, besides my brother. I thought my life was horrible, then I met people on here my age and younger who were on transplant list and had transplants, or had already died. It was then I realized how serious CF is, and I became an advocate for my health. Before then, doctor visits were a joke to me and a waste of my precious time, just like all the treatments I took. Well, i did everything i was suppose to for a while, then about 6 months ago, I stopped. That went on for a while. I got pretty sick in April and ran a fever for a few days and just felt like crap, then I went to the doc and my PFTs had went from 90% to 80% in only 3 months. Needless to say, I started back doing everything and I haven't missed one thing since then, and I don't plan to again. Just being a part of this CF community makes me want to live and be as healthy as I possibly can.

 

[Alyssa]

Thanks for sharing !! It is great that you found the site -- it is a wonderful place ! I too was kind of in denial before I found the site -- My daughter is a mild case and my son hasn't really shown any symptoms (but does have both genes too) so I kind of felt they were so different from others with CF, I didn't need to join a group.... after my daughter cultured PA last summer I woke up and thought... Oh... this is "real" maybe I should find out more .... so I too went looking for websites and groups. Here I am this is a great place to share stories, learn and grow.

Glad to hear you are now committed to your health way to go !

I like your rose, it's really bright and pretty.

 

[Jem]

What a nice post to read Sara. It is so good to hear that the support here is inspiring you to take care of your health. <img src="i/expressions/face-icon-small-happy.gif" border="0"> I too have met some really awesome people here and although I am much older than most I have learned so much from the younger CFers as well as from their loved ones. It is nice knowing that there is 24 hour support here and that symptoms and issues we are facing are not unique among this crowd. We are not alone and together we make a pretty amazing group. Keep taking good care of yourself.

 

[HairGirl]

Sara thanks for your post, it helps out so much to talk to people who are going through what you are and lots of other stuff. Please take care of yourself so that you can participate on this site for a long, long time.

 

[JazzysMom]

I remember until I was SUPER sick in 2000 I never thought of myself as "one of those CF patients". I had no need to correspond or chat with "them". What could them possibly have to offer. Well then I thought I would look into it since my hubby got us a used computer. I developed a few bonds (Holly Catheryn being one of my first), but as I got better the need diminished. Until last year when my husband actually thought I might die. Well you know having this group to bounce ideas off of, get opinion & input or just laugh/cry with has been the best thing I have done. No sorry....the BEST thing is staying with it even as I improve. Did you know that other CFers actually understand almost everything I can go through at any given time. HUH WHO WOULD HAVE THOUGHT! So I understand your appreciation for this site & I share it with you!

 

[anonymous]

I think you're one of the funniest people on this site. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I heart general weiner.

 

[skh]

Sara, I am so glad you found this site and it has helped you take charge of your health. What a gift this site is to us all.

I know that this site has been a wonderful place for me to gain knowledge on cf and help me be a better support system for my daughter. I can't begin to tell all of you how important you are to me. I may not post often but I come here often to learn from you. And when I do post I value your responses. So I too, thank you from the bottom of my heart. I just hope that some day when my daughter is ready to discuss her cf she comes to this place so that you can all be support for her also.

 

[kayleesgrandma]

Sara, please please take care of yourself! I too have learned so much from all of you on this site. The best is to take as good a care of yourself as you can. We want you around for a long, long time. Thanks for sharing--your rose is really cool!