Let me come right out and answer the question that I know is on everybody's mind; yes, I have the same shirt on from yesterday. Whew, glad I've gotten that out of the way :) In the following video, I discuss why I am so passionate about spreading awareness for CF. Enjoy!
I'm just saying, there have got to be some gals out there vying for a bed next to yours at the Hotel d' Health!!! You make the hospital look Good :) Good catch, Mandy!
ReplyDeleteHee hee. I wouldn't normally type that, but everyone needs a little giggle in the big house. I'll never admit to this in future correspondence.
-Cystic Gal
Again, great post/video! I think in Middle School I tried to hide my cf for the most part and not many people knew that I had CF! I remember this teacher asking me these questions after I got back from one hospital stay...and they were off the wall questions, like did they do this to you and such. And I was like "No." It's really not a big deal getting a "tune-up." But now I realize she just didn't know what CF was! Awareness is the key like you said!
ReplyDeleteMy 5th grade teacher had a best friend who had kids with CF, so she knew all about it..which was nice, because I was in the hospital 3 times that year! But in reality, I don't think many of my teachers or close friends truly knew what CF was! That was a while ago, and I realize more now than ever how important awareness is and being open about my CF!
And like you, I have such a huge passion for that now and spend most of my free time (away from school and work) volunteering or working for the CF Foundation. We've come a long way recently! And I feel like God has given me this gift to help spread awareness, speak to others, etc. And it feels great being able to do that. And it feels even greater when you see the progress being made, and the awareness getting out there.
And being on the other side, you meet other CF patients or families that don't ever get involved or hide their CF or their child's CF. They keep them in a "bubble." Which I can totally understand where they are coming from! You have to be comfortable with sharing, but it also takes a little effort on your part to step out of that comfort zone. It will benefit you so much more than you realize!
Ok..sorry..i probably wrote way to much. I can talk about these subjects for ever...like i'm sure you can, because it's such a passion of mine now! Maybe I will try the video thing next time I go in the hospital??? Not sure I would know how though =)
Glad you had a good day!
I bet all the nurses love you!! No wonder Mandi spends time there with you, she has to protect what's hers!
ReplyDeleteI watched your video today and I am new to the cf comunity. I have a 3 year old son with cf and pre- hypertention... Every chance I ,get I tell people about cf and what it is. Most of my co workers know that my son has it and I have been stopped by a few asking what it is and i jump on it and tell them. See i didnt even know what it really was till my son was dignosed. I do have one question is there to much awareness. Sometimes i just feel like im being overly obsesive. I dont try to treat william different and ,outside of having to give him more attion to, give him the meds. and his vest really im not but his dad just thinks i talk to people to much about his cf. I just want to let people know what it is and hope to get them to donate to the ,cff
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