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Lupus Online Support Group
A community of patients, family members and friends dedicated to dealing with Lupus, together.
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02/12/2008 16:38
mommyto1girl1boy
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Hello everyone. I have just joined the group. I am fortunate that I am not a Lupus sufferer, but my mom was just diagnosed a few months ago. She has been suffering for years and none of her doctors believed her. She has just now finally gotten the diagnosis. She has other health issues as well. She has really regressed in the last year and I'm looking to learn all I can about the disease so that I can be as helpful and supportive as possible to her. She is stubborn and a go getter. She doesn't want any help from anyone, so I am forcing myself on the issue in the hopes that I can educate her a little more. Thanks for having me. I look forward to getting to know all of you.
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02/12/2008 17:56
fibroforever
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Welcome to the support group!

You are SO sweet to support your mom. She may be stubborn, but some day she's gonna appreciate all you are doing for her. She will probably come to depend on you.

I could tell you many, many stories about my mom. I'll make it short for now.

My mom had been sick from the time I was a little girl. She had Systemic Lupus. She was diagnosed back in the day when there doctor's weren't as knowledgable as they are now. We traveled literally 4 hours a day when she had a doctor's appt. There was only one doctor in the state that even had any idea of what was going on with her.

She eventually became an advocate for Lupus. She was on the Lupus board and would travel with the doctors- educating people and the government. At the time, she knew more than anyone ever could have dreamt about knowing about that darn disease.

She was a great mom. She was so vibrant and beautiful! And even though she was a fighter, she died at a fairly young age, from complication from that disease. She's been gone for eleven years now.

She had many, many health problems that were from the Lupus.

Anyway, just ask all the questions you want. Feel free to PM me if you ever want. I'm online a lot. I'm a Group Leader for the Fibromyalgia Support Group. So yeah, I check posts, my PM's, and emails a lot. If I don't know the answer- and I know I don't know everything, cause I'm not a doctor. I will be happy to help you find it though.

You take care. Take care of your family. And just continue to learn and be ready for when your mom needs you the most.

Amy

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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02/12/2008 18:01
mommyto1girl1boy
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Thank you so much Amy. I don't know if I'm as sweet as I should be. I think I have a lot of anger going on and guilt issues as well. Since none of her drs believed here, I started thinking she WAS crazy, and I think she was beginning to believe the same. I feel TERRIBLE now that we know she has SLE. I have been reading and reading and the one thing that sticks out in my mind about this disease is how unpredictable it can be. I am looking forward to hearing any and every story about SLE I can. Thanks again!
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02/12/2008 18:24
fibroforever
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Was she diagnosed by a rheumy? What are her symptoms? And I'm guessing they diagnosed her based on her symptoms, along with her labs?

I'm here for ya!

Amy

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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02/12/2008 18:54
mommyto1girl1boy
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Yes she was diagnosed by a rheumatologist. Her labs are scary actually. She has almost no Vitamin D, she is anemic, her Epstein-Barr levels were in the thousands. It's like nobody knows what to do or how to help her. She is on so many medications, I don't see how she keeps up with all of them. I am actually going with her to see a new family doctor tomorrow. This will be my first time going to an appointment with her. It seems like all of her doctors have given up on her. We are hoping a fresh pair of eyes will help! She has had 3 or 4 serious episodes in the last 6 months, but she's too stubborn to go to the hospital.

Thank you so much for listening to me ramble. I'm so confused about all of this.

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