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Old 11-10-2012, 08:35 AM   #1 (permalink)
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Default could use prayers and answers

I was diagnosed with Lupus this past Wednesday they are sending me to some specialists to determine which type but the over all test came back positive not really what we were looking for my doc really ran it to rule it out for the multiple health issues I am having and have had over the last several years I really dont know much about it yet just that there are multiple types and some are more treatable than others do you know anyone that has it ? what is the quality of life like as you get older ? is it different for everyone ? like I said I really wasn't prepared for this at all and the INTERNET has an overwhelming ton of conflicting info on it my doc really thought I had fibromialga (sp) and ran the Lupus test as a formality to rule it out I am still kinda wrapping my head around all this and could use some prayers and correct consolidated info about it so if any of you can help let me know I am taking it one day at a time right now and trying not to let all the crazy stuff I have read on the web freak me out not terribly successful on that so far either
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Old 11-10-2012, 09:07 AM   #2 (permalink)
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Carol, I am so sorry to hear this & will definitely keep you in my prayers. I do not know anything about Lupus so I won't be much of a help. I do know when you are told something & you search it on the net you usually will find things that you don't want to read & will freak yourself out. Please keep us posted.
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Old 11-10-2012, 09:16 AM   #3 (permalink)
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Carol I am so sorry.
My niece Tabatha has lupus she was diagnosed at 14 and is now 26. She also has bipolar, manic appresive, and a few other things, she has been addicted to drugs, not really my niece she is my dad's wife granddaughter, my dad passed but I still treat her as family.
She has some problem with painful movements, and had hard time bouncing back fom childbirth, she has 3 kids.
She has cleaned herself up and takes her meds and is a good mom.
Her lupus is under control but does have flare ups.
Good luck and sending prayers.
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Old 11-10-2012, 09:36 AM   #4 (permalink)
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I'm so sorry to hear that. I have no experience so I can't really offer advice, but I did a quick search and found a few forums that you might want to join for support. I hope it's ok to post them here.

WeHaveLupus.com
Lupus Forums
http://www.thelupussite.com/forum/

Will keep you in my thoughts. I hope you're diagnosed with one of the easier to manage types. And, of course we're all here for you as well!
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Old 11-10-2012, 09:47 AM   #5 (permalink)
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So sorry to hear about this. Our prayers and thoughts are with you.
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Old 11-10-2012, 02:45 PM   #6 (permalink)
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I am so sorry about your diagnosis, Carol.... Unfortunately, I know nothing about this disease. I have a friend that has it. She gets her good days and bad, BUT, MOSTLY GOOD! My prayers go out to you. Hang in there!
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Old 11-10-2012, 03:29 PM   #7 (permalink)
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Sorry to hear about the diagnosis. My father in law has lupus and has been doing quite well. It is manageable once you find the right combination of meds. Diet has a lot to do with it as well. Although it is a little scary at first once you figure things out its a lot easier to manage. As hard as it is I would really try to stay off the Internet , there's tons of information and not all of it is helpful.


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Old 11-10-2012, 03:52 PM   #8 (permalink)
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Sorry to hear about your diagnosis, though I don't know anything specifically about lupus, I do know that diet does make a difference with any autoimmune disease - especially avoid gluten.


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Old 11-11-2012, 05:16 AM   #9 (permalink)
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Carol,
Being one that personally has lupus, I cannot say "I'm sorry to hear about your diagnosis." I know, that's gonna sound crazy to someone who doesn't have it but believe me when I say that by the time you've gone through all the medical problems, in the end, it's nice to have a name to put to it and that you aren't just heading for the looney bin! Usually by the time it's a confirmed diagnosis, your body has been through hell and depression kicks in hard because you just can't ever get to feeling quite right.

People here are correct in saying diet control helps but for many more reasons than you can imagine. First, you have to do double duty to protect your organs. You'll want a referral to a dietician ASAP. You're gonna be looking at diets that focus on renal, cardiac, diabetes and anticoagulant. If you're like me, your first thought is gonna be "what the hell am I gonna eat?" You don't have to completely restrict yourself from anything but moderation is most important here.

Second most important thing to protect is your bone and joint health. Again, diet plays a big role in this and if you can keep the extra pounds off, chances of not having to take the steroids will improve greatly. With that, and believe me when I say I know it's hard when you just feel like crawling in the bed and dying, is that you absolutely have to exercise. Not only to keep unwanted weight off but you have to keep your joints well lubricated. If running or walking is out of the question, find a pool. This is essential and will save you from flare ups more often than not.

Last but by far not the least important is protecting your immune system. I don't care what "category" they put you in, no one person with lupus is the same as another. If your kid comes home from school with a cold, tell her you love her and then tell her to "Go Away". Keep everything clean like a germ-a-phobe because believe me when I say, if you aren't already, you need to be. With that comes protecting your skin. Watch for any cracks or breaks in skin and get them cleaned, covered and keep an eye on them. Remember, our skin is our body's first line of defense. As I'm sure you know, as we age, our skin isn't as supple as it used to be. Find a quality lotion and use it frequently.

At the first sign of a flare up, contact your doctor immediately. Don't pull a "me" and try to ride it out on your own. Getting the medications on board to reduce the inflammation in a timely manner is key to surviving lupus.

The last thing I suggest is getting your family involved with your diagnosis and treatment. Trying to do this on your own will only hurt your relationships with those you love. You'll feel guilty when you aren't feeling good and can't make yourself get up and do things. In the end, that guilt will eat away at you bit by bit. If your family is aware of what's really happening in your body, you'll find they will be quicker to assess you and look for ways to pitch in so you don't have to feel guilty about a pile of laundry or dishes left in the sink . When you're down, you're just down. Take the meds, get the rest and worry about things later. Keeping your stress down will also help tremendously.

I hope this helps some. Just remember, no matter what you read on the Internet, no two ppl with Lupus are the same so the treatments aren't the same. There isn't a one dose, one med that fits all. Lifestyle choices are the key to living with lupus.
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Old 11-11-2012, 07:20 AM   #10 (permalink)
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Carol - I have had Rheumatoid Arthritis since I was 18 (I am now 49). I know it is a hard thing to wrap your head around. RA can also be mixed with Lupus so I am constantly being tested for it. Autoimmune diseases are not fun whatever they are.

Tracilee gave you excellent advice.

PM me if you need to talk.

Hang in there sister - it will be ok.

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