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I have probably gotten the most support from the people on this board. Although we all come from different walks of life, we have an understanding of this disease that others not in our battle havn't a clue what we are really feeling.
I have a group of girlfriends, who I have been friends with for 25 to 45 years, who have been the glue that keeps my social life together. We meet with or without our husbands and have a total blast with each other. We have supported each others families births, illnesses and deaths. They treat me like I am one of the girls and not an invalid. We lost one of our friends to conjestive heart failure brought on from drugs, alcohol and ciggarretes. She was an amazing friend and comic. We still laugh at her stories. I know if I die before any of them, they will also keep me alive with my stories.
My husband and children are pretty much in denial. I have tried to talk to my oldest about past hurts and forgiveness. She has already put me on that pedistal reserved for saints and believes I am the best mom in the world in spite of my many shortcomings. I want to give them the opportunity to tell me how they feel, but they are not ready to go there. My youngest, daughter seems to be the only one who feels comfortable sharing her feelings about my illness and possible early death.
My Mother in-law has been my rock. She has been the one person in my entire life that I can go to and she denies me nothing. My own Mother died a day after our first Wedding Anniversary and my Mother in-law has been there for me ever since. She's 87 years old and I can't bare the thought of her dieing before me. She is loved by everyone.
I have the support of my church family and other church families who continue to pray for me.
Two years ago I sent a letter to several friends, neighbors, and family members, to let them know about my disease. This gave them a chance to digest the news before facing me. The responce was varied. Most of them have supported me while others can't deal with it. I saw the same thing happen with my Mother when she was on her death bed. Her best neighbor friend would not cross the street to see her, which hurt her very much. I have felt that sting, but my support group has made up for it many times over.
The person that has disappointed me the most has been my sister. I know she loves me and she has been very generous materialy with us, but she still doesn't give me the time I need to be with her. She is under a great deal of stess with her job and has many responsibilities. Both of our parents are dead so we only have each other. I believe I remind her too much of our mother and it just hurts her too much to see me.
This was a good idea Chelee. I hope your world will resume some kind of normalsy and you can get back to enjoying your life. You have been through alot and don't deserve the treatment you have been getting from your so called hmo medical support. They took an oath and should be ashamed at how they have treated you and many others in the same boat.
Love and Blessings to All
Lu Ann
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