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Lupus and the family

Lupus and the family

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Posted by Christine on June 14, 2000 at 06:32:23:

This is a very difficult letter to write. I am a 26 year old female and lupus has been i my family for as lomg as I can remember. My mother just had her 43 birthday and when she was about 15 or so she was diagnosed with lupus.I can remember times in my childhood when she was very ill, to the point where we didn't see her come out of her room for weeks at a time. I don't think that there was ever a time or a week that went by where she did not have some kind of doctors appointment to go to or mewdicine to take or some kind of therapy. As the years have gone by my sister,my brother and myself have watched my mothers' body just become less and less. She has become this shell of what was once a viberant woman. I can remember when I was about 17 or so I was getting ready for work and I was home alone with my mother,that week she extremely ill, and I called to her to let her know that I was on my way out the door and I didn't get a response, so I went into her room and I found her lying on the floor having several ceszures. The doctors said she only had 6 months to live and there was nothng they could do exept make her comfortable. Which meant giving her so many drugs that she didn't know who she was let alone who any of us were. The years have gone by and she out lived what all of the specialists have told her, but we have recently found out there that there is more invovled than just the lupus.She has major heart,lung, I mean she has major problems with all of her major organs. Now its not just my mother that is sick any more. The man that has stood by her and that has cared for her all of these years has recently found out that he is dying fromm a genetic disease called "ALPHA ONE ANTI-TRIPSON DISEASE" it affects the liver and the lungs. In 1979 my brother died of this disease when he was just a year old. And both my father and my mother have this disease,along with my mother having lupus. My father has six brothers and sisters and my uncle has tested postive for alpha one but the others don't want to know if they have this disease or not because they don't want their family to know thye have a time limit to be here with them.
This disease is a genetic disease and it is very possible that my parents have passed it to my sister,my brother, and myself. The doctors have given my parents 5 to 10 years to live at the most. They are only 45 and 43 , and I am only 26. I am not ready and I am not prepared to lose both of my parents. I have two small children and how do you explain to a 7 and a 5 year old that their Nanna and Poppy are dying and they are not going to be here to see you graduate from highschool, or see you get married, or to see you have your own children. You can't explain that to a 7 and a 5 year old! You can't even explain that to 26 year old! My mother is having very serious heart problems, right now she has been on a heart monitor fr several weeks. The doctors can not give the kinds of tests she needs to find out what is exactly wrong with her heart because she is allergic to the medicine they use to do the tests, and tbey can do surgury because she would never survive it. So right now as it stands its like a guessing game the doctors guess whats' wrong and my mother and father wait. If anyone does read this please I need some help HOW DO YOU DEAL WITH KNOWING BOTH OF YOUR PARENTS ONLY HAVE SO MUCH TIME ON THIS EARTH WITH YOU? HOW DO YOU EXPLAIN THIS YOUR YOUNG CHILDREN? HOW CAN YOU LIVE YOUR LIFE KNOWING THEIRS IS COMING TO AN END SO EARLY? HOW DO YOU NOT BLAME YOURSELF?

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