I came across this great website the other day and feel like I HAVE to share it with all my people out there. Nestle Health Care Nutrition helps struggling families who need extra nutritional help, like us CFers!!! Please visit their website and see what you think, you can order cases or if you contact me personally I will send you an application from Nestle. My email is sarah@breathe4tomorrow.org
How great is that!!! Their website is: http://www.nestlenutritionstore.com/
OK Just had to share with you, I know it is one of my struggles, so I am hoping this will help…
I have a cold like no other I have had in a very long time. I am quickly reminded of how lucky I am to have such great health…
Two weeks ago I went into the hospital because I was going to be a part of the Vertex 770 study. I was so SO excited to be a part of such an amazing study… So I am there and go to do my PFTs… the highest I have been in the last 10 years is 68% and that was in primo shape!!! I BLEW A 72%!!! I could not believe it!!! I cried…
A couple days later we lost my grampa George… a very sad day for my family… My his soul rest in peace… After a day of sad and crying I started feeling feverish and I could feel that my lungs were swollen… and there it was… lurking in the darkness… A COLD!!!
So here I am, 10 days later… and finally feeling better… though the cough I have is still terrible… and I feel SO TIRED!!! I step on the scale today… 122 lbs!!! EEKKK!!! I am on a mission to regain my weight and my lung capasity… but it is just a reminder for all of you out there that think, “But you look so healthy…”
Thank you all and I hope to be on here alittle more in 2010!!!
xoxo
Sarah Jean
I have received so much positive feedback about my video (see below) and I want to thank you so much if you find yourself on our page!!! Please feel free to go to “contact us” and send me a message… I love hearing from you all…
xoxo
Sarah Jean
Yesterday I celebrated 33 years of fighting and living and loving… We lost some of our most precious fighters over the last few months… but that is why we fight!!!
I want to thank you all so much for all the love (even though you don’t leave comments)and support over the years…
We are hitting mile stones everyday and everyday is a new better greater day!!! I love you all with all my heart and wanted you to know, that if you are reading this… YOU are one of the reasons I will kick CF’s A$$ for another 33 years!!!
XOXO
Sarah Jean
A great friend of mine that I love dearly, wrote this tonight and it hit home for me because of the last month or two of devastation our community has expirenced with losing so many of our warriors… I want to share it with you… Love you Aimee Lecointre!!!
“I know that I fight CF everyday not just for myself, friends, and family but everyone who has lost the fight.”
It went great and we are so thankful to all of you that came out and showed support, not only for the boys in Telluride, but for Breathe 4 Tomorrow!!! There are pictures and we are trying to figure out how to post them, so be patient and in the mean time, you can go to http://www.facebook.com/album.php?aid=33200&id=1145256584&l=eb4554e852 and take a look!!!
Thank you to Telluride… we appreciate you guys so much and wish you all the success in this world… For those of you who have never heard them, please take a minute to go check them out at www.tellurideband.com… they wrote the song Hope Happens Here… I am going to share the lyrics with you all, please take a minute and read them… and you will understand why these guys have a special place in my heart…
HOPE HAPPENS HERE by Telluride
You never get the chance to prepare yourself
Even if you had there is no way to tell
If it would be easier to know your world is turning upside down
Its just so hard to look up when you’ve fallin
And you can’t even start til your at the bottom
Down on your knees praying you’re not alone
Asking God for a little HOPE
Then you find it
Here on a new strangers face
That just got the news they’re in the same wait
Hope happens here
In the hearts and the hands of the people doing all they can
Hope Happens Here
Hope Happens Here
So your finding that you never have to fight alone
And there’s no way to repay the love that is shown
In a hallway that feels more like a home
To always know that wherever you go
You’ll be right here
In a 10 year olds smile, that lights up the room as he walks by
Hope Happens Here
In the songs that you sing as your rockin your baby to sleep
Hope Happens Here
Hope Happens Here
When you fight til you swear that you’ve had enough
But you there no way you’d ever think of givin up
Hope Happens Here
On that same stranger face that just got the new they going home today
Hope Happens Here
In a young mothers eyes that just realized they’ve won
Hope Happens Here
Hope Happens Here
