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We are still patiently waiting!!! Not so much patient at this point… The attorney we were using droppped the ball and that is why it has taken so long… So his boss called us and told me HE is taking over and going to get us our designation… so YAY!!! I just wanted to let you all know we are still here and we are going to kick it back into high gear… We have had the priviledge of helping a couple families this year and we are looking forward to helping so many more… The need is so huge at this point, and unfortunately supply and demand doesn’t apply here… In fact it is the opposite… When the demand (I prefer to call it “need”) is high the supply is low and when the supply is high and available, the need isn’t as high… SO I am turning to our CF community… please pass this along to your friends and family and have them go visit our memsaic wall…. It is so cool… You have the ability to purchase a brick and with that, you can post a picture and write a little memo in support of CF!!!
OK, so I just wanted to update all of you out there that visit our blog… It has been a while, but I am back and ready to discuss some of the issues bothering me right now… but I am going to so that later, for now I just wanted to post an update and a “poem” that a friend of mine wrote about CF:
We have infections that cause inflammation and we have inflammation that causes infection. We use antibiotics to kill the infection just to have the antibiotics kill our livers.
We awake each morning to live another life, yet we complain as to how CF intrudes on our life. We complain about the three weeks of IV’s but people in this world do IV’s year round.
We choose to rehabilitate our lungs just so they can be trashed and replaced. We have implants to save our lives when others have implants just to make themselves prettier.
We never thought we would live this long, yet we did everything the doctors told us to. They say mapping our Genes will lead to a cure, yet genetic manipulated fruit is bad for us.
The world is 2/3 water and mostly salt…all I need is salt to make my cells well. We know things about life that people never figure out, yet everyone feels sorry for the life we live.
They say this is a disease that affects the digestive system and the lungs, but in reality it affects my friends, my family, my car, my house and myself. There are days of endless coughing and pills, but each day I choose to live for another one.
Most people go through life not konwing what their purpose is.
I know my purpose, do you?
You are all in my heart and I thank you so much for your continued kind words and inspiration and your support….