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  1. #1
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    I was told this would all get easier . It's actually the opposite . It's only becoming more real. This is my life now .. Trapped by medication that makes me insane / nauseous on a daily basis. My mentality has changed so much I'm up I'm down I don't know what feelings are even real anymore. I have never in my life felt like 4 different people as much as I do now. I'm 24.. And 95.. And all I want to do is jump out of my skin. I am no longer One with this shell I carry around . You can hit me with a truck anytime and ill take it.. But mess with my clear mind and Ill take a turn for the worse
    Last edited by Sdelia3; 04-21-2014 at 12:41 PM.

  2. #2
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    I am not sure why your were told that this would get easier. This is a chronic disease that could be with us, in one form or another, for the rest of our lives. To suggest that this will be easy is a very unfair statement. It is not easy. Perhaps what makes it feel easier is the fact that many of us have learned how to make significant changes in our lifestyles to help us manage our symptoms better. Making those changes, in and of themselves, is a very difficult thing to do. But, at some point, it becomes a very necessary thing to do.
    We have to reach a point where we stop grieving over the loss of the life that we once had and start working on managing the life that we now have so that we can have some level of normalcy. It is essential that we work on this for the sake of our health.
    Most of us are on a medical regimen that would make most people's head spin. I, personally, take 18 pills per day to manage my Lupus and FM. There is no medication made that does not come with its own set of side-effects. It is important that we know the side effects of each of our medications so that we can better judge what is causing what. In this way, we are able to make changes in order to manage those side effects and to lessen their impact upon us and upon those around us. Here again, I must advocate "EDUCATION". Becoming knowledgeable about this disease, its treatments, its symptoms, its medications and their side effects, is one of the best weapons that we can arm ourselves with in our efforts to manage our disease and subsequently our lives.
    The frustration and depression that you are feeling are normal. However, you cannot allow yourself to get stuck there. That will certainly only serve to exacerbate your disease. I also advocate that it is equally important to take care of our emotional health as it is to take care of our physical health. One cannot heal without the other. Perhaps you can speak to someone; a spiritual counselor, a therapist, a trusted friend, a family member. Anyone whom you feel can help you work through some of your anxieties and frustrations. Otherwise, please feel free to come here to us whenever you feel the need to speak with someone who understands what you are dealing with.
    Try to concentrate on doing those things that will help you to live better with this disease and make this you priority. Please do not spend your time commiserating over your losses, work hard on helping yourself to do the best that you can with this disease. I wish you the very best.

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

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    Hi, I've been dealing with the effects of Lupus since I was 18. I'm 66 now. I can't tell you how many different phases of changes that I've had to deal with. Each new phase was different from the last and I'd have to readjust my life, my life style and my way of thinking. I won't say it gets easier, but mostly it doesn't get harder. It all depends on how lupus attacks. You need to think positive, negativeness not only brings you down but can effect you physically as well. I know the meds are also a downer, but it does take time to find the right combination that works for you as an individual.

    I have found this web site a comfort, I've made friends here that have carried over to other sites and in some cases even In person friendships. I also blog on here, mainly because the feature is here and I'm not that computer savvy.

    Good thoughts and hugs for you

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  6. #4
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    I am 64 and have been dealing with lupus since my 30's and I believe I had it in my 20's also. It is not easy, but I was not that physically active in my young life, so it wasn't so bad for me in that respect. Over the years, yes, it has gotten worse and worse, but you have to be mentally strong to cope with it. Try to be as positive as you can. I vent a lot on this site and it really helps me to cope and it makes me stronger. I know that I am not alone and that in itself is comforting. You can deal with this. SaySusie said it all. She is extremely knowledgeable about this disease and she is one of the most positive people I have had the privilege to come in contact with on this site. Good wishes I am sending your way!

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    Hello, I was diagnosed Friday April 18, 2014. For me things are easier at least for this moment. My doctor said I have had Lupus for a long time and didn't know it. I have been told by so many doctors that nothing was wrong with me or that I was a hypochondriac. It is easier for me because I know that I there is help in the form of medicines and sites like this. I have been sick for such a long time and my boys and husband were at a loss since my doctors told them i was acting out for attention, but they could sense I wasn't faking how I felt. My husband and boys have read up on Lupus and are helping me cope. So at least for me for now, things are easier as I learn to live with Lupus.

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