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Thread: I am new here and am looking for someone to talk to.

  1. #11
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    Hi Melinda,

    Thanks for the hot yoga explanation!! About the heat thing, I'm not sure. I do find that heat is a pain relief and comforting for me. I also find that hot tubs/baths increase swelling though?

    I hope you are feeling better today. I know what you mean though it is a constant battle. You have done the best thing by finding this site, I just can't believe that it took me so long to do this kind of thing. Although we have lupus and obviously that is bad, I really do think that it makes us better people. We have put up with so much cr*p and we are learning from it. I think that eventually we learn more about ourselves and gain a better understanding of what makes us tick. That is an advantage of having a chronic disease - we are more compansionate and are more in touch with our emotional side and can deal with a hell of a lot more than someone who just bums through life without a care. Especially though this site where we can help each other, we are doing good things. Don't get me wrong I am certainly not positive about having lupus and sometimes I cry and wonder if I did something bad in a past life. I cannot wait for a day when I can accept having lupus, if there is such a thing, or even better wake up one day and not feel pain or sick or tired etc. The reality is that I am struggling to get on with my life, but deep down I know I have to in any case as this lupus is not going to go away. Then that makes me feel worse as I think why should I have to struggle when there are so many healthy people. Although, there are so many other people much, much worse off. At least I am alive and have all limbs intact, it can always be a lot worse. I feel guilty for feeling so blue for myself too. I think maybe I have two brains and they constantly argue and reason with one another -ha ha. Who knows, if ever you need to chat just contact me - you have my email address.

    Carly
    X

  2. #12
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    Apr 2005
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    Default Christmas DX

    It was confirmed in December, 2004, that I have Lupus. My mother died of Lups complications last January. I have had symptoms and flares, incuding heartattack. I am taking prednisone and plaquenil now, but my biggest complaint is this constant pain in my upper left tummy. Does anyone have any ideas what it could be. Gastroen says IBS, CT shows nothing. I have hearing loss+vertigo+tinnitus, multi-nodular goiter, GERD, Kidney Inflamation, simple cysts in liver and spleen, enlarged heart and spleen, bouts of pleursy, sinus and urinary infections, gastritis, hair loss, Raynaud's, joint inflamation, pernicious anemia, and lots of weird blood test results. What is the best course to take?? I know I can't get rid of it, but I would really like to have a better quaility of life.

  3. #13
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    Apr 2005
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    Boulder, Colorado
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    dear ellen,

    my symptoms are much diffrent then yours so i will not be of much help. but know that you are not alone and that many people with your symptoms and worse have pulled out of it. you life does not have to look like your moms.
    i'm sending you a prayer. keep pushing forward!

    melinda :P

  4. #14
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    Default Hi Ellen

    I too had pain nearly constantly in my upper left abdomen. Finally I got my doc to do an Upper GI endoscopic peek, as well as a full abdomenal sonogram. They finally found the problem, or should I say problems. I have an enlarged liver, enlarged spleen, hiatal hernia and nodular Brunner's gland (which means polyp-like growths) and which is thankfully benign.

    Talk to your doc, insist that he do at least the sono on you (though I'd shoot for both).

    Becka
    "Bleh" sums it up nicely, don't you think?

  5. #15
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    Apr 2005
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    Default carly

    hi carly,
    tryed to send you a email at work but it came back, im going to try to send you my address...
    best,
    melinda

  6. #16
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    Hi All,
    Sorry for my late response. I am 3 years from start of illness 18 months since diagnosis. I have retired on ill health and the pressure is off me. It certainly has made a difference.
    I have found other ways to occupy myself. I have set up a support group in Leicester England. Where I live. I have built three message forums, A fun one, A gif one as I have learnt to personalise gifs and a Lupus one. I have started writing poetry. All these activities don't mean I have to do to much moving about so I can sit at my computer even on bad days.
    I enjoy most days. i tolerate the bad days.Its not going to go away so I certainly won't let it destroy me.
    I guess I am lucky I have reached total acceptance.
    I will chat to anybody who wants to talk. all my links are in my signature
    Val

  7. #17
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    Jul 2004
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    Default Hello Ladies

    I have not been in here for a bit and its nice to know that good people are still dropping by. I was diagnosed a one year and one month ago.. (talk about keeping track). I was devastated but you really do get over it.. Well not in its entirety but I guess you learn to accept it little by little. Sometimes I even forget I have it, until the joints start to hurt, or the hives, or the soar like stuff on the roof of your mouth; But in spite of it all, I have great days, good days, so-so days and just plain horrible, you just gotta be ready to accept it and deal with it. You must really really take advantage of them and enjoy! As far as support, its ok although my family doesnt really get it, especially my sister. When I get tired often, she says, "stop being lazy," or "you always have something wrong," I have learned to overlook those things. Because if i dont it will stress me and then I am worst off.

    I have promised to make some changes, but I just cant get around to doing it... such as, eating healthier, excercising, etc. I start but never continue. We Lupie's have to have a good diet and excercise. I am just lazy and overwork myself (with the office).

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