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2010 - Lupus Roll Call
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Andie_WebMD_Staff posted:
Welcome to all new members and visitors. I hope you will say hello. We have a lot of different backgrounds when it comes to health and medical conditions.

Everyone-new or old check in with:

1. Who are you? What name do you want to go by in the community?
2. What part of the world do you live in? Where's Home
3. Your experience with Lupus and one tip that's helped so far.

Can't wait to hear from all of you!!

~Andie, Community Moderator
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renalupie1 responded:
I am Rena, that is what I go by. I live in a sleepy little town in Northwest Ohio.

I have had lupus probably since high school, but was never diagnosed until my late thirties. Mine is a mild case, and as long as I watch my stress, and take care of myself, it is pretty much under control.

One tip that has helped me is this: If you don't take care of yourself, you can't take care of anyone else.
 
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rosehurts responded:
Hello, and blessings all around! My name is Rose and I live in Austin, TX. My lupus was diagnosed in 1993 after my silicone breast implants leaked into my lymph system. I go from just maintaining to sick in bed for weeks.

One tip that has helped me: Swimming! (in warm water) For me, I get enough of a workout that my endorphins (sp?) kick in and it gives me mucho pain relief and my outlook on life improves. I am so much happier since I began to swim!

Rose
 
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shannielee74 responded:
Hey all! I'm Shandra aka Shannielee. I live in the capitol city of Utah!
I was diagnosed last December (worlds best and worst Christmas gift). But the rheumy believes I've had SLE for at least 14 years.
The one thing that has helped me the most is mediation. Taking time each day to center myself and prepare for what is to come helps me to cope with all the extra crap that seems to jump up.
Shannielee74 ~~~Life is what happens when your busy making other plans...John Lennon~~~
 
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CherylD1966 responded:
Hello everyone,
My name is Cheryl I reside in MI. I was dx with Lupus in 2003 but I started having flare ups around 1992. Im 44, Its been a long painful road! The misdiagnosis the thought that I was some type of chondriac and to top it off my Mother has it also, dx in 2000 we go through this together exchanging info on symptoms and what works or doesnt work. @ one time I was on 7 meds. I weaned myself off to just 3 one for pain, depression and hypertension..
 
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Ines74 responded:
Hi

My mom is having knee replacement surgery on monday she suffers of lupus, in the past she had shoulder repair surgery and she had a lot of complications after it all related with lupus, now doctors are approving and saying all test are ok and she can have the Knee surgery, I'm very worry about the complication she can have after the surgery. Can sombody tell me what should we expect?
 
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HG1948 responded:
Hi,

I go by HG. I live in the Dallas/Fort Worth metroplex of north central Texas. I'm appox. 15 miles south of the Dallas Cowboys Football Stadium, 6 Flags Over Texas. I like living here, except in the summer!

I was diagnosed with subcutaneous lupus in 2003. I was started on 10 mg of prednisone daily and 400 mg of plaquenil.

I was treated for many disorders for 14 years before I was diagnosed with lupus, including chronic fatigue mmmune dysfunction, fibromyalgia, and degenerative joint disease.

My experience with lupus has been that managing this illness is the hardest struggle I've ever faced. My tip is to find things outside of yourself, that are bigger than you are on which you place your trust, and you to focus your attention

My faith in the promises of God sustain me. I am also sustained by the love I have for my husband and daughter. I still resolve to be an example to my daughter of how to maintain an "overcomer's attitude" no matter what happens to to you. I also strive to be an even better wife to my husband as we enter our golden years together, I'm 61 and he is 64. I keep my professional license active, just in case a cure for lupus is found, and my current level of functioning expands more.

HG
 
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HG1948 replied to Ines74's response:
Ines,

I am sorry I don't know about the outcome of knee replacement surgery on a lupus patient, but I'm certain someone who reads this message board will, eventually. However, to increase your chances of getting someone to see your post, go back to the start of this Lupus Community Message Board. Just above the question posted by Andie, our moderator, to the right, you'll see a "Post Now" button and start a "Discussion". Enter on the subject line, something that tells others what your post is about, like Needing Info On Knee Replacement Surg. & Lupus. If you don't get the response you won't, try reposting your question at a different time of day, and day of the week.

I need a knee replacement myself. So, I'll be watching to see what we learn together.

HG
 
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HG1948 replied to HG1948's response:
Ines,

I meant, "If you don't get the response you want..." gee wiz!

HG
 
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Andie_WebMD_Staff replied to HG1948's response:
HG you are so awesome! Thanks for jumping in there and giving Ines that very important tip to help get the most response!

I started this discussion in the hopes that perhaps we would be able to bury the old one. We'll still need to guide new Members a bit to keep this discussion from going rogue too...so I appreciate your help!
 
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Andie_WebMD_Staff replied to renalupie1's response:
Wow, Rena...that is a great tip and one of my favorites to share too!

I've learned if we don't fill our own well of health and happiness up we will have nothing to share with others. And, when that well goes completely dry, it's can be a heck of a time filling it back up again!

That would be a great discussion to start....best tip for rejuvenating and refreshing ourselves. I think we're onto something...watch for it coming soon!

You are such an important part of this community, Rena, and I just wanted to say thank you for all you do. Our Lupus board is what a community is all about thanks to all great Members like you!!

 
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Andie_WebMD_Staff replied to Ines74's response:
Hi Ines,

Welcome to the community! Sorry to hear about your mom and the combination of medical conditions she's facing.

Our friend HG offers good advice on getting the best response to your questions . Try posting as a new discussion and I bet you'll see our community jumping in to help out. (Just make sure to come back and let us know how you're doing!)

We have a super Knee & Hip Replacement Community that can probably share some helpful experiences with you and give you an idea of what to expect. Try posting your question there as well.

Again...Welcome!!


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