Untitled
YOU DON'T NEED TO READ THIS I JUST NEEDED TO GET IT OUT!
I wish I could find words to describe today. My heart is breaking, my mind is racing and I feel helpless. Craig remains in pain, eats very little and needs less from me. It is hard to comfort him. I don't know what to do anymore. I clean his wound, I fix his TPN, I try to make him "comfortable", but none of it is enough. He is still not getting better. We hold out hope that on Friday the Pain Managment doctor will be able to address some, if not all of these issues.
This disease is so damn vicious!! It is relentless and just when you think you have turned a corner and can be happy, wham...it slaps you down! This disease has hurt so many wonderful people. I could name so many that have died needlessly because of asbestos. The really sad thing is people are still dying and will continue to die until WE ALL decide to make a difference. Sometimes I feel like a small voice screaming trying to keep people safe and nobody cares. Nobody listens...because this will never happen to them!! Well guess what, it does and it sucks!
Imagine being told you have cancer. Then imagine being told you have a cancer that your doctor has never seen a case of in his/her entire career. Then realize there is NO standard treatment for you cancer. Then realize your doctor cannot even tell you where to go to get treatment, but his best guess is that you have 6 months to live. This is still happening today, 10 years after Craig has been diagnosised. EVERYDAY!! People believe it go home and die. I struggle with Craig's disease but I also struggle with how can I make a bigger difference!! How can I save 1 more life? This is so tragic. I don't want one more family to experience what Emily and I have endured. It is hard for me, but I know it has to be extremely hard for her to watch her dad, her hero suffer.
I am so angry, can you tell? I'm tired of the suffering, I'm tired of crying, I'm tired of being sad. I'm tired of the disease robbing me of my happiness. I want Craig back!!! I want him healthy, strong and fun. I want to dance all night at Emily's wedding. I want to grow old with him damn it! I want to go on long vacations and walk on the beach. We deserve it!!
I want it all....Shelly
I wish I could find words to describe today. My heart is breaking, my mind is racing and I feel helpless. Craig remains in pain, eats very little and needs less from me. It is hard to comfort him. I don't know what to do anymore. I clean his wound, I fix his TPN, I try to make him "comfortable", but none of it is enough. He is still not getting better. We hold out hope that on Friday the Pain Managment doctor will be able to address some, if not all of these issues.
This disease is so damn vicious!! It is relentless and just when you think you have turned a corner and can be happy, wham...it slaps you down! This disease has hurt so many wonderful people. I could name so many that have died needlessly because of asbestos. The really sad thing is people are still dying and will continue to die until WE ALL decide to make a difference. Sometimes I feel like a small voice screaming trying to keep people safe and nobody cares. Nobody listens...because this will never happen to them!! Well guess what, it does and it sucks!
Imagine being told you have cancer. Then imagine being told you have a cancer that your doctor has never seen a case of in his/her entire career. Then realize there is NO standard treatment for you cancer. Then realize your doctor cannot even tell you where to go to get treatment, but his best guess is that you have 6 months to live. This is still happening today, 10 years after Craig has been diagnosised. EVERYDAY!! People believe it go home and die. I struggle with Craig's disease but I also struggle with how can I make a bigger difference!! How can I save 1 more life? This is so tragic. I don't want one more family to experience what Emily and I have endured. It is hard for me, but I know it has to be extremely hard for her to watch her dad, her hero suffer.
I am so angry, can you tell? I'm tired of the suffering, I'm tired of crying, I'm tired of being sad. I'm tired of the disease robbing me of my happiness. I want Craig back!!! I want him healthy, strong and fun. I want to dance all night at Emily's wedding. I want to grow old with him damn it! I want to go on long vacations and walk on the beach. We deserve it!!
I want it all....Shelly
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