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Thread: So many questions I have D:

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    Unhappy So many questions I have D:

    So I'm new to all of these things concerning lupus. I was diagnosed 3 days ago and my head is still spinning. My doctor didn't put me on anything yet, and she said that I have all the starting signs of Lupus, so I'm like at the very beginning of it *or so I believe that's what it means ha ha*
    I guess my questions are pretty much, what have you all done besides taking meds to help your lupus? Or is taking the meds the only way to keep it in check?
    I know that there are 3 different kinds of lupus, and in May when I got back to my doctor I have to ask her which of three I have as that is important. But I do know that one of the kinds is where your kidneys, lungs, heart, brain, ect can be attacked by your antibodies, and that freaks me out beyond belief!!! I'm trying to learn everything I can, and I'm trying to find out different things to do besides taking meds, as I want them to be a last result if I need them. Though I heard by just taking a vitamin could even be a enough for some people if the lupus isn't truly that bad.
    I guess another thing that was floating around in my mind was, is lupus fatal? I know that my aunt had it but she lived to be 82 with it. But I mean, I don't know how to put it into words. I guess what I'm trying to say is, I want to know how to prevent it from becoming fatal, like everyone, but I read that a lot of people do die from it, even when they are young. And......that really doesn't sit well with me. I'm willing to try everything to keep it under control, but right now since I'm still in shock from it, I still feel like I'm falling into like and endless hole D:
    And ideas or info would be great. Thanks :]
    So many deadlines, tests, exams, finals, projects, and now lupus to top it all off................how could life be better --__--

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello GreaterLife,

    I'm Rob, and I was diagnosed with Systemic Lupus in 2004. Detailed answers to many of your questions can be found in the part of the forum called "Lauri's Lounge". Go to the very top of the page and you will see "sticky" threads that deal with all things Lupus. There are different kinds of Lupus, and the most serious and most common is Systemic Lupus Erythematosis, or SLE. The big question, is Lupus fatal? Yes it can be, but it is the exception, not the rule. Many of us, myself included, live long and fulfilling lives despite the disease. For example, my mother is 73 and was diagnosed with SLE 19 years ago. She's still going strong.

    What can you do, besides taking meds, to keep Lupus under control? The most important thing you can do right now, is avoid UV radiation. In other words, stay out of the sun. Wear high spf sunscreen, wear a wide brimmed hat, and stick to shade as much as possible. Another thing to avoid, and this can be difficult, is stress, both physical and emotional. It's easier said than done, but any amount of stress reduction will help. Lupus has an effect we call "flares". Lupus is always there, and it can go from a relatively dormant state with little to no symptoms, to a full flare where the disease attacks various parts of the body causing many different symptoms. Lupus feeds on stress, and it will cause many of us to go into a flare immediately. It has to be reduced and avoided to the best of your ability.

    As far as meds, Plaquenil is the most commonly prescribed drug, and many people have good results with it, and tolerate it well. You should speak to your Dr./Rheumotologist immediately about the possibility of starting it. You will need to have your Dr. clarify for you what type of Lupus you have.

    Finding out you have a incurable, and sometimes fatal illness, is a huge shock. What you are feeling now, is normal, and something we all have experienced. Lupus can be controlled with proper meds and lifestyle changes. Once you get it under control, and adjust to the changes, much of the fear will go away. It is overwhelming for you right now, but that will go away too with time. Get in touch with your Dr. and fid out the specifics of what type of Lupus you have, and get started on the proper meds ASAP.

    The sticky info areas of the site will answer many of your questions, but don't be afraid to ask any questions you may have, or if you just need to talk, we have some good listeners here. Welcome to our group.

    Rob
    Last edited by rob; 02-11-2010 at 08:52 AM.

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    Welcome GreaterLife,

    Rob left some great info and the sticky posts are invaluable! I was diagnosed in November 2009, after about 5 years of symptoms and trying to find a doctor that would listen. It is very disorienting and you have every right to feel grief and confusion with this new news. Don't be ashamed when these feelings rise up.. Each person processes it differently. I myself and still working through things now and my husband and I are trying to work through a lot also. It does change things. But for me, it was a blessing that I finally got an answer and now I can stand up and fight for myself. Each day is a little better... When the flares happen, it can be so disheartening. On those days, I come here for support and understanding that I can't find anywhere else. This is a great supportive group of people whom I grow to consider family more and more every day. I hope that you can find the same answers and solace here as well.
    Shannon
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    Proud Momma to an 8 month old kitten. She was on death's door when I found her and now she growing up into a beautiful cat, she's my baby.


    Life isn't about waiting for the storm to pass... it's about learning how to dance in the rain.

    God, grant me the serenity to accept the things I cannot change...
    The courage to change the things I can...
    And the wisdom to know the difference.

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    Hi GreaterLife,
    Welcome to WHL. As Rob told you, read and learn as much as you can from this site and other sources, too. Knowledge is power. Work with your doc to figure out what is best for you. Don't be shy about coming here to ask questions or just to vent or chat. We're all in this together and we all understand what you're going through.
    Good Luck,
    Marla

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    Thank you all so much. You all have been very helpful :] and I have been coping with the thoughts of having Lupus. Lots of tears and depression later ha ha :] I have just said, I can get over this and have my life like I want it.
    A fun little fact was today me and my sister just got a beagle pup after looking around for a good few months.
    I'll be calling my doctor on Monday for some more information on my lupus and what not. But I do know she says it is in the starting stages, and that she didn't want to start meds yet. Though I wanted to know, I was looking around on the site a bit more *finding so many things helpful such as people with lupus could be allergic to Sulfa drugs, and I am very allergic to all of the ones listed I never knew ha ha* but that aside, where could I find some more info on diets and vitamins and what not? With my doctor not wanting to start anything I want to keep it that way as long as I possibly can :] and I'm willing to go full blown vegetarian if I have to, but I saw it was good to eat fish and chicken and what not. Any info or link to another form/site with some foods and what not would be heavenly :]. As well as some vitamins to keep up on as well would be helpful. I've been drinking OJ for the vitamin C and have started B12 vitamin :] but I'm sssttttiiiillllll looking
    Thanks again, and this site truly is very helpful,
    Sandy
    So many deadlines, tests, exams, finals, projects, and now lupus to top it all off................how could life be better --__--

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    Hi Sandy,
    If you check through the threads, you'll find one in which several people were discussing a raw foods diet. I think most of us agreed that the best diet for all of us is the healthy one that is being talked about so much lately - plenty of fresh fruits, vegetables, whole grains and proteins from nuts, fish and white meats. Use dairy sparingly, use olive oil and totally avoid trans-fats and most sugars, like high fructose corn syrup. This means avoiding processed and fast foods.
    I refuse to give up my coffee, but that's my personal choice. I admit to being a coffee addict and a chocoholic. (By the way, dark chocolate is good for you)
    The Mediterranean diet is a popular one right now, and it is much like what I was mentioning. There are some good cookbooks out for it in the bookstores. I'm cooking lots of fresh, healthy foods for my hubby and me lately.
    Check with your doc about taking supplements, but mine told me strongly to take fish oil (for the Omega 3s) and several of us are on high doses of vitamin D because we have a deficiency. Ask your doc about checking that. It sounds like you are young, so I'm guessing that a good multi-vitamin should do it for you fairly well. We older folks are more high-maintainence!
    Just don't fall for the snake-oil miracle cures that you will see advertised on the net. They are a waste of money.
    Keep up the good attitude, keep researching and have fun training that pup,
    Hugs,
    Marla

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    I'm still New to all of this as well. From my personal experience... Definitely explore your options before you throw yourself on medication. But do it in a timely fashion. I have transformed in a matter of 4 months, from semi-healthy girl, to someone who can't walk to the bathroom some days. Make sure your decisions are what you feel is right, and go with your gut, not your doctor. Do the research yourself, write down a list and ask the questions. I stumbled upon this myself, and suggested an ANA test. Also, find a doctor that dazzles you with their care, and thoroughness. Don't settle in that department, I'm still looking for someone I trust, so good luck to you.

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