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Thread: Dealing With The Outlook Of Lupus

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    Default Dealing With The Outlook Of Lupus

    Hi,

    Just wondering how anyone deals with the outlook Lupus causes. Knowing that for the rest of our lives we have to work around Lupus, it won't work around us. That we are always going to be tired or something and that that effects how we can see and determine the rest of our lives. Like I have had to be off work lately, I think suffering depression but my Lupus just flaring up again and it just becomes to much knowing and thinking that for the rest of my lives there will be struggles. Like can I manage Uni which I am planning to do next year and can I handle that or eventually get into a Law career which I really want to do. It just seems too much now. I don't like how it can beat me, like I use to babysit all the time and now I so want to but don't know if I can and others in my family are so supportive but sometimes the consideration of my Lupus becomes annoying because I don't want it to determine what I do and can and can't do yet it's a bit hard to not consider it and the symptoms etc. What annoys me is I was all fine with it before as I have been diagnosed for a year and I just accepted it but for some reason now I just don't think I can, like it's hard. I don't know just if anyone has some words of wisdom because I know Lupus is hard for everyone but having it at such a young age, as teenagers, I think brings a whole lot of other concerns and worries. So any advice anyone? Please and thank you!!

    Yol

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    Don't get me wring though I love and need and wouldn't be able to cope without the support of my family and a few of you may know my sister on this site, debstar. It's just hard that people, including myself are forced to consider my Lupus because of the symptoms and what it causes etc

    Thanks again guys just wanted to add this.

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    I'm 18 and I've had it for 2 years and its still hard. I find myself throwing myself a pitty party sometimes and truely what helps me is coming here and talking it out with everyone. I cant talk to my family because they dont get it. They are as understanding as can be but they cant understand what its like to wake up in great pain, feel great in the middle of the day, come home and feel like you just want to pass out, then cant do anything they ask because you hurt so much. I have a hard time doing the whole "stay in the here and now" kind of thing but I've been trying not to think about my future. It scars the hell out of me sometimes to think that I could have something bad happen to me because of my lupus. I could worry about getting hit by a bus too, but I dont. I've been trying to take peoples advice and live now and not worry so much about what might happen later.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    Thanks. That last sentence or two really helps. It's just sad and scary thinking of you're potential before and after you're diagnosis and accepting that no matter how much you want it not to change it may be forced to. It's just really hard sometimes actually accepting that and I don't think anyone can ever understand until it happens to them no matter how close you are to someone and think you understand the day it happens to you it opens up a whole lot more understanding and questions and experiences and fhsksnfjdkdj now Im not making sense but maybe you know what I mean but those that do try to understand do make it a whole lot easier

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    i have had to retire, because of the complications of lupus.

    my thoughts are try to live as you want to live.

    it is not easy, but the worst thing you can do is give up on life.

    depression is a bad spiral that will eat away at you, making your lupus worse.

    enjoy today, for tommorrow will bring ..................... ?
    (nobody knows what tommorow will bring)

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    wow - Thanks Steve, I've been struggling to accept that I will have to live with Lupus. My doctor said my disease was only in the "emerging" stages, so I had hoped she was wrong. The last few weeks symptoms have to coming fast and furious and frankly it's really ticked me off. I am far too busy to be slowed down by this. There are so many things I want to do. But right now all I seem to have energy for is the basics. By the time I get home from work I'm exhausted.
    I'm sorry, I shouldn't complain. So many on this site can't work and are in constant pain. So many have far more serious issues than me. But it sucks!!

    That said, your advise is very wise. I can sit and moan about the things I can't do, or I can move forward with the things I can. Modify my expectations and activities instead of giving up. I'll be "walking girl" instead of "running girl".

    Thanks again,
    Brenda

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    Default lupus

    Hi, I was diagnosed with lupus when I was 14 and now im 20. I am currently had to take off of college because I was too sick to continue and now am finding myself having trouble getting out of this rut. I am learning it is the little things that are making this illness difficult. I could deal with the no sun and hurting all the time if I could just sleep throughout the whole night. Also, since I live in a small town I am limited to a small amount of doctors and am finding it difficult to feel better because my doctor wont listen to me. She is conviced I am crazy and depressed, but it turned out that my body stopped making my vitamins and hormones. So I always go to my family doctor before hand, because I like him and he is a third of the price. I think what bothers me most now that I am older and looking back at the past 6 years is that I missed a lot in my life. I have a twin sister so it was hard when she got to go swimming with friends, find her first love, or go to a concert while I was too sick to care.

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    Totally agree, I wish I would have learned a lot early in my disease to except my limitations.

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    The thing is, instead of thinking about what we CAN'T do, focus on what we CAN. When I was first misdiagnosed with rheumatoid arthritis, the doc tells me my downhill skiing days are over. Uh, ok. Mind you I live in a state where skiing is a BIG DEAL, but it never was for me, so no loss there. I can still cross country and ski bike if I want to. I will admit that Lupus at least has given me a valid excuse to NOT ski! If you think about it, there's a lot of things we can't do even if we didn't have lupus. Just go with me here for a moment... without lupus I still wouldn't have made it to the Olympics because I'm not athletic to begin with. Without lupus I still wouldn't have been a powerhouse on Wall Street or a Broadway star, or, or, or BECAUSE I wasn't any of those things to begin with. BECAUSE of Lupus I AM more aware of the little things in life. Because of lupus, I don't take anything for granted. Because of Lupus I got my head on straight and realized what is really important in life and to me and am consciously trying to live each day the best I can and strive to become the best person I can be. Because of Lupus I've taken on the mantra "I will not die as I have lived" meaning I went through a lot of bad stuff when I was a kid and because of my husband but I will do what I have to do to rise above it.
    Yeah, there's a lot of stuff we CAN'T do but there's a lot more stuff we CAN do, lupus or not.
    "I'm going to get healthy or die trying"

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    I see things a bit different then others do. I see my Lupus as my partner in life. From the day Lupus came into my life I have had to change my thinking. At first it was " I can do anything!" and I ignored the symptoms until a trip to the ER came during thanksgiving and from that moment on it was me being tossed from Doc to Doc trying to figure out what is wrong. "ANA is positive, Low Vit D, High BP (mine used to be low), chest pains, memory a small piece of what it was before and on and on even then I wanted to ignore it. I tried to "over power" Lupus. Wanted it to do what I wanted no matter what. Lupus made me suffer. The more that I fought to have my way the worse I became.

    It took awhile to figure out that if I fought to have my way I lost. Every time I lost. I finally figured out that I had to change my way of thinking. I couldn't ignore this disease but I didn't want it to win either. I finally figured out that we are partners. While I don't give in to my disease I don't fight it as much anymore. I learned to think about how Lupus will react and, if there is a way to do it that won't set Lupus off, I do it a little differently. I think of Lupus and I as I would think of a Married couple. Neither gets their way all the time. They have to learn to compromise if the marriage is going to work and Lupus and I have to compromise if we are going to work.

    I had to go on disability due to the seizures that were brought on and it seems every few months I get another disease added to my list. One day I was upset because I wasn't working and things were so hard on my daughter and I. She came out to see what was wrong and I told her that I felt that I had let her down. She hugged me and said "Mom, I am not upset. For the first time you are home when I get here. You get to go to all of my things at school. I am not sorry at all".

    It's all about perspective people. Lupus and I are partners. Sometimes I think pushing my lupus out of the way is worth it. Last week was an example. I worked 20 hours over a 2 day period to help take donations for people that lost their homes in the fire. I knew it would make me worse but it was worth it. I was in bed for 2 solid days after and not feeling good the rest of the week but I would do it all again. I can't live my life like this though. I have to consider what Lupus will do when I make my decisions. I still enjoy life but I know that my life is now a compromise. I find that to be much better then a loss
    Last edited by tgal; 09-18-2011 at 08:57 PM.
    Mari

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

    ~Winston Churchill~







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