Many unanswered questions - Lupus Message Board

sweetpea104 · 12-17-2002, 07:50 AM

I am very confused and need some help from some of you Lupus veterans. My dad's wife had been diagnosed with SLE before he met her. She has been very private and secretive about her condition and treament, works very hard, long hours and keeps a positive attitude about her condition. All we know is that she was diagnosed over 10 years ago and was told if she ever went out of remission again she would not survive. She is now out of remission and does not expect to live much longer. We know nothing about her organs being damaged other than she has had problems with her kidneys recently and has suffered severe anxiety attacks. This is such a mysterious disease and we are all in the dark about it. I have read several posts and it seems some people live for years with this disease. She is only 44 and I am having a hard time grasping that she may not be with us much longer. Can anyone shed any light on this condition and what may be going on??

Denise F · 12-17-2002, 11:56 AM

I hope she is currently seeing a doctor. A lot has
changed in the last ten years since she first got the
diagnoses. Most people with Lupus do not die. It can
be a mild to serious disease. It may not help much
to read up on Lupus because the disease can affect
every individual differently. One thing we all have
in common is we have to take good care of ourselves
and get plenty of rest. Good luck to her.

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sweetpea104 · 12-18-2002, 06:01 AM

Thanks for your reply. She is currently seeing a "lupus specialist" at a university hospital. The doctor there who had been treating her has since relocated. She has been having weekly appointments for "injections" to help her kidneys function. That's really all we know and that she says if she can't get things turned around she won't make it much longer. She is looking for another doctor for a second opinion. I still don't really understand all of this and how it works. It's such a mysterious disease!

Ceya · 12-18-2002, 06:53 AM

Hi sweetpea,
I am so sorry to hear that she is so sick. I am kinda new to the dx. I to have been tring to figure out this mystery desease. I never know what to expect. As a parent I guess I am guilty of keeping alot to myself. I think mainly it is because If I can't understand this how can I explain it? Everyday is some sort of pain, if I tell my family everyday I feel like I am whining and they do not need the worry. There is not a whole lot we can do about it anyway. I go to my doctor every 3 mos. I feel that is about all I can do. Even he can't tell me much. I wish there were concrete answers. The uncertainty is the most difficult aspect for me. I am not sure about her dieing I pray that she will go in remission again this is always a possibility. Alot of what I have read is positive. Maybe she can go on dialisys (sp) But Kidney failure is a problem. Check out some of the other lupus sights for more information. Feel free to write for support. I can always listen. Even if I don't have the answers. You may be a great help to me I am also looking for some answers.
Hope everything is better.
Happy Holidays!!
Ceya