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09/11/2008 00:01
saralaurie
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my 22 year old daughter was diagnosed with lupus 13 months ago. i am not sure how many years she lived being diagnosed. so far it is only effecting her skin. we know all the triggers that set off her immune system. how do i support her. sometimes i look at her caring for her two boys 1 1/2 and 3 and i am wondering what she is thinking. she just started school also. taking the prerequisites for nursing.
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09/11/2008 08:25
saralaurie
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is there anyone that answers questions here please
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09/11/2008 09:34
ReeRee
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Well it will be a year on the 28h of this month that I have been diagnosed. She's doing good if she only have the skin problems. I had kidney failure and many other problems. But the best thing I can tell is try to listen as much possible. Tell her not to get too stress because that can bring on a flare. When I get really stressed, everything goes wrong. I'm in school also and I have days that I get really stressed but have to relax and let some things go. She may not be able to take as many classes as she wants at one time but she should still go back. As you go on you begin to what makes you sick and just learn to avoid it. Make sure she eats right, exercise and be happy. Just thank God she's still and try to enjoy every moment she cans. Hope I was some help.
~ReeRee
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09/11/2008 10:25
saralaurie
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thank you.............i am sorry about your kidney failure. they are keeping a close eye on her kidneys but so far so good. thank you for answering me. god bless you and your kind words. sara
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09/11/2008 17:57
mumeva
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Hi my daughter is 23 and we believe she has a neurological problem which they believe is lupus. I have central nervous system lupus plus peripheral nervous system lupus along with vasculitis lupus. I have had two brain hemorrhages and get severe vertigo and have horrible nerve damage in my feet and legs. I just hope my daughter doesn't have the same lupus as I but it really is beginning to look that way. She is being cared for by a wonderful family physician and a neurologist and she is being tested with labs and had an MRI of her brain. She lives 4 hours north of me but when I visit I try to care for her. She suffered in June of this year a stillborn baby boy and she delivered to term and had no clue that there was anything wrong. There is an investigation into the doctors practice and the hospital so she's not only dealing with the death of her first baby but now the illness. The prison where my son-in-law works provided counseling for them and its been great. She works 6 hours as a bank teller but possibly will get on with the state at the same prison doing secretarial work. Her husband is wonderful and very supportive and she has wonderful friends she can count on and that makes me so happy because we are very close and it hurts that I can't be there for her although she does call me every day. I don't know if you live near your daughter but just supporting her with words or maybe sometimes you can give her a helping hand with the kids little things make a difference. I will say a prayer for you and your daughter.

Eva

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09/12/2008 10:31
saralaurie
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eva thank you for your message. yes i live with my daughter and her t

2 sons to help with the every day stuff and so she can sleep more and not have so much stress. i guess we are pretty lucky compared what your daughter is having to deal with. i am so sorry she lost her baby. my sister cared a baby full term that was stillborned....that was 30 years ago. life is tough. but we always have so much to be thankful for.

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09/12/2008 10:34
fibroforever
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I'm sorry to hear about your daughter. She is so young to have been diagnosed with this horrible thing.

My advice to you- Just be there for her. Let her talk, you listen. Help out with the children if she needs it. If she feels up to doing stuff, let her. Sometimes, we feel worse with just being incapable of doing things. It can be quite frustrating. And you might watch her have many ups and downs. She will learn her limitations. But it will take time. Maybe even years. But, yeah- all you can do is be there.

You are a great mom for caring about her. You being here and asking questions is one of the best things you can do for her. Learn all you can.

If you need us. We're here for ya! Tell her about our site too. We're more than happy to be here for her as well.

You take care. She needs ya!

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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