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    Default It's official

    I just got home from the Rheumatologist. For some reason I was hoping for a different out come, It was easy to tell myself that my pain and results were just a fluke. It's hard to admit that it's real, I want to scream at the top of my lungs, WHY ME???? I know it sounds selfish, but it's hard when I've heard so many bad things about this disease. Anyway just thought I'd share. Good luck to all!

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    On one hand, hearing the reality is tough. So FINAL, yet it is also a relief. Now you know what you are dealing with. So stick around and hang out with us and we'll all get through the trials and tribulations of Lupus.
    "I'm going to get healthy or die trying"

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    I am sorry to hear that you have been diagnosed with this disease. I'm sure that you are relieved to know that your symptoms do have a name and that what you are dealing with is real.
    Please do not feel as if your life is over because of the bad things that you have heard about this disease. There are so many of us who manage to live relatively normal lives while having Lupus and who do so for many, many years. I, myself, was diagnosed in 1985 (31 years ago) and I am still here, still maintaining a decent lifestyle and am no where near being dominated by this disease. I believe that I will live a normal lifespan and if I pass, it will not be because of my Lupus.
    If you begin now to make the appropriate lifestyle changes (avoid sun exposure, exercise regularly, eat healthy, take medications as prescribed, get recuperative rest, keep doctor's appointments, etc.), take care to avoid excessive stress and flare-ups, you may be able to maintain a pretty normal life for many, many years.
    I know that having a chronic disease can be a tremendous adjustment and that it is a life-changing event. But, please do not consider it a life-ending event.
    We are here to help you to learn as much about the disease, its treatments, its medications and how it affects you. Having knowledge will be you greatest asset in managing your health. Learn as much as you can so that you can make informed decisions, with your health care team, about your health. I wish you the very best.

    Peace and Blessings
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    Saysusie
    Look For The Good and Praise It!

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    Wendy, Susie is so right about what living with lupus is about for many people. You tend to hear from the sicker people on this site, so it's not necessarily an accurate representation. Lupus is definitely a factor in my life, but it doesn't take away from who I am. Being one of the "healthier" (no significant organ involvement) folks on this site, I find that I am inspired by those who are more affected and it helps me keep my perspective on the disease. Yes I need to take care of myself, but it could be much worse and I am blessed that it is not.

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    Never doubt how important rest is. I don't mean 20 min during the day I mean, when you are feeling worn out or bad, an entire weekend (or longer if able) to give your body a chance to catch up.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by wendylee03 View Post
    It's hard to admit that it's real, I want to scream at the top of my lungs, WHY ME???? I know it sounds selfish, but it's hard when I've heard so many bad things about this disease.
    Hi Wendy,

    What you are feeling and asking isn't selfish, it's human. And, it's normal. Back when I was first diagnosed with SLE, I literally did scream at the top of my lungs WHY ME?

    As time goes on, the shock will wear off, and the big monster that is Lupus will shrink and lose some of it's teeth as you gain confidence, learn to cope, and discover that you can indeed live with it and still have a great life.

    I know you have heard many bad things about this disease. So I'll tell you a couple of good things-

    I have successfully lived with Systemic Lupus for 8 years now, and I'm still going strong. My mother, who also has SLE, has lived with it for no less than 32 years, and she's still going strong too.

    Have hope, things will get better.

    Rob

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    Thank you all so much, I'm hoping the medicine that they are starting me on will help, I'm anxious about having to take meds, I have no idea how long I have to take them or what the side affects will be. I'm just worried about it getting worse and causing more issues. You all give me such tremendous hope for the future though!

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    Quote Originally Posted by wendylee03 View Post
    Thank you all so much, I'm hoping the medicine that they are starting me on will help, I'm anxious about having to take meds, I have no idea how long I have to take them or what the side affects will be. I'm just worried about it getting worse and causing more issues. You all give me such tremendous hope for the future though!
    The single most important thing is taking meds. Lupus no longer has to be a death sentence and many people are able to get back to a close to normal life but the meds are key. Without them your organs are at risk. With them you will adjust and learn what to do and not to do in order to enjoy life. It may be different but it can still be good. Take those meds though!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    I'm by no means an expert but I'm almost positive I have lupus or mixed connective tissue disease (mixed on low with lupus) but I have only experienced a few days of take your breath away exhaustion and only one night of unbearable pain. I honestly believe that what you eat and how you manage stress is directly related to how you feel. I only eat protein, fat and veggies. No starch, no wheat and no sugar (Stevia and Xylitol are your best friends) Yes it sounds flavorless but it's really not. I also take a few vitamins like B-12 and occasionally a magnesium drink called natural calm to keep me even keeled.
    I think these things have kept the unbearable factor check. The dietary changes also keep any prednisone issues in check.I am in no way claiming this to be a cure but a valuable change in lifestyle. I say this because I notice immediate effects from fatty beef and any starch based products (in terms of inflammation)
    In addition to my endless research into autoimmune conditions I like to delve into the food aspect of self care.
    Whenever I don't feel like doing it, I always remember that tomorrow I may not be able to do it. Then doing it becomes a blessing instead of a burden.

    I got some stuff goin' on.

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    Quote Originally Posted by howsabout View Post
    I'm by no means an expert but I'm almost positive I have lupus or mixed connective tissue disease (mixed on low with lupus) but I have only experienced a few days of take your breath away exhaustion and only one night of unbearable pain. I honestly believe that what you eat and how you manage stress is directly related to how you feel. I only eat protein, fat and veggies. No starch, no wheat and no sugar (Stevia and Xylitol are your best friends) Yes it sounds flavorless but it's really not. I also take a few vitamins like B-12 and occasionally a magnesium drink called natural calm to keep me even keeled.
    I think these things have kept the unbearable factor check. The dietary changes also keep any prednisone issues in check.I am in no way claiming this to be a cure but a valuable change in lifestyle. I say this because I notice immediate effects from fatty beef and any starch based products (in terms of inflammation)
    In addition to my endless research into autoimmune conditions I like to delve into the food aspect of self care.
    I should have been more clear in saying that this is what works for me. I have only superficial symptoms, no organ involvement. I should not have gone off in a rant about food knowing full well that any dietary changes without consulting your rheumy could cause problems. I apologize profusely.
    Whenever I don't feel like doing it, I always remember that tomorrow I may not be able to do it. Then doing it becomes a blessing instead of a burden.

    I got some stuff goin' on.

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