Re: losing my family support

From: LNewman@milbank.com
Wed Jun 7 11:46:11 2000


Toni, I am so sorry to hear that you support base is depleting but you know what, you have all of us here to support and love you unconditionally and to know that anytime you need to talk, there will be plenty of us to be here to help you. ALL of us feel (more times than anyone realizes) so blue and alone at times because "healthy" people have no clue as to how bad we truly suffer. If they wanted to give awards ceremonies, all of us would win an Oscar as "Best Actress/Actor/Supporting Actress-Actor in Extreme Pain, Functioning As A Healthy Person" and the winners are........... in goes our names. I have been asked at all the jobs I have had: "Man, how can you just sit there and act like you are not in the kind of pain you say you have?" and my response is usually: "Trust me, if I could let you experience for 15 mins. what I go through on a 24-hr. basis, you would be on the floor, in a fetal position, screaming your brains out." We have no choice but to suffer like dogs until we can have the life-saving surgery we so disperately need to even began to HAVE a life, and to top it all off, we have to suffer until that time comes. We have such a load to bear that I honestly belief that we are ALL going to Heaven because I don't know about you but I must call His name a million times a day: "Oh Lord, help me get through this day." "Oh Lord, ummm, this is too hard for me, I just can't do this anymore; help me please oh my Jesus." and so on and so forth. I bet all of you are nodding your heads right now saying "Yup, that's me alright!!!" But this is where we have to be strong and support each other because that is when DOUBT IN JESUS that he is with us or hears us because we are still suffering. Believe me, He IS still with us and our time will come, who's to say when but it IS coming, I know that like I know myself and when it gets so bad I want to cry at work, I close my eyes and take myself to a place in Heaven; Jesus is sitting under a huge oak tree on one of those stone bintches and I am sitting on the ground at His feet with my head in His lap, and he is stroking my face and hair. It is at that moment that I find a peace wash over me as if tiny feathers were touching my soul, and I get warm and relaxed and I feel a renewal when I open my eyes and I am then ready to jump back into life as I know it, at the computer answering phones, typing briefs and motions, etc.

Toni, come to us with your complaints -- that is what we are here for. Cry, scream, get mad then think of something funny -- maybe a joke that cracked you up a while ago that you still remember and share it with us. Ask for group hugs, you'll get them I guarantee it!!! I, too, explain my pain as if like the movie "Aliens" is actually true and one of them is living in my abdomen and is coming out any day now!!! People that do not understand cannot even try to get it because they are not having the pain themselves. About the testing, I really balk at taking the upper GI series because if you are already spitting up, you certainly cannot drink that stuff yet they make us do it anyway. I found out that you do not even need to drink as much as they make you and that is really shameful. I don't care much for the lower GI series either but if I had to have one or the other, I would pick the lower GI series!!! Scary isn't it????? We are all becoming "Test Patient Professionals"!!! I am so sorry that this was a mini-novel but I just wanted you to know that I am here for you and everyone else reading this so please feel free to write me anytime (as you can see, I have had a bit of down time but that is coming to an end right now because here comes one of them now) so everyone take care and you, Toni, keep your chin up my dear, we are here for you and don't you forget it!!!!

Love, Laura

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