Too funny Zaphoon!
I have had the media at my house on a regular basis, at first I would stay up and SHAMPOO the carpets and drive myself ragged......And then my friend told me I might be sending mixed messages to the media that this disease is not too time consuming and like I have all the free time in the world, when actually that is so far from the truth.....
I am a neat freak, control freak and bossy, It is just my nature and thank GOD for that because if I wasn't Freddie would never get the things he needs and being trached and vented you have to keep a sterile enviroment. So those things have paid off........lol......
When they try to screw me around, I mention that they need to check out my connections and found out who I am, or I WILL get the media involved..........It has worked every time, but the sad thing is that this disease should not matter who you are. Freddie and I have a foundation that is called "Rock 4 A Cure". We do alot of resource work for people and help with the little things...I wish we could do more, but I have been there in the beginning not knowing all the ins and outs of the system, I do want to help others and above all raise awareness of the disease. We are already planning our annual fundraiser for next year!
It is alot of fun........lots of good music, last year we had Ted Nugent and Point Blank and numerous others. I am working on some big names for this year, It is really cool to have these guys come out and support our cause and to EDUCATE the public on what is really going on...........They leave our fundraiser with so much knowledge, Last year USA today was there and the ALSA and boy did alot of folks finally "get it"..........Well I could go on forever, but I need some coffee, since Rose and April drank all the wine.............lol.......
Your Friend,
netty