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Thread: RRRRR I HATE LUPUS!!!!!!!!!!!

  1. #1
    Join Date
    Aug 2006
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    Default RRRRR I HATE LUPUS!!!!!!!!!!!

    RRRRRRR :evil: :evil: :evil: :twisted: :twisted:

    How I hate being in pain, I have such terrible leg and knee pain, neck pain and back pain. It's been so bad today that I can't even sit up for more than ten min before I have to lie down cause the pain gets so bad. Not to mention the fevers and oh new thing I am getting hot flashes. I know i'm to young to be getting menopause but boy I have to now sleep with a little fan beside me cause sometimes at night i have to turn it on.

    ooo and my IBS is hating me right now and the chest pain seems to be getting more often and worse. I'll be seeing my rheumy and GP at the end of the week.

    I can't even walk cause of the knee pain so i've been stuck in my room with my mom bringing me up dinner and such.

    Then tonight I tried to go downstairs and yup I fell. Thank God it was the first two steps that lead to the landing before the long steps to the downstairs so I didn't fall down a whole flight just two stairs.

    But of course I fell on my right side and banged my shoulder HARD onto the stairs. So now my shoulder is swollen up and sore, like I really needed another pain.

    I can't believe it, than I get axciety attacks because I had worked sooooooooo hard this summer ot loose some of that crappy 95 pouds that I had gained being on predisone and now i'm getting axciety attacks that I'll gain the thirty pounds I lost back because I can hardly move!

    Then today I get a letter saying that I've been denied a second time for disability and now I'll have to go to court. It already took the stupid governement almost a year to decide that I wasn't diabled and now i'm told that it can take up to a year to get a hearing date!!!!!!

    I guess when it rains it pours! :roll:

    I'm in a giant flare up and I am hating ever min of it. It's like everything comes at the worst time.

    Good thing is about having a boyfriend long distance is that he can't see me like this and I haven't told him that I can't walk right now and that i'm using a cane/wheelchair at times. I know i'll have to tell him eventually if it doesn't get better before the end of Nov (when i'm seeing him next hopefully) but i'm hopeing that this stupid flare will be over by then.

    He just tends to worry to much that I don't need him worring about me.

    I hate how this disease takes everything away and leaves you feeling like you've lost everything. I can't plan anything anymore, I couldn't even go to my best friend's grandfather's funeral because of not being able to walk and go down the stairs.

    Anyway sorry of the long rant I just had to get it out ops:
    SLE Lupus. Fibro, IBS, RA\

    Matt's Brown Eyed Girl!

    "I'm not broken, I'm antique; a little worn out but still beautiful if not more so because of it."

  2. #2
    Join Date
    Aug 2002
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    WE can all sympathise with your being upset and angry, but what you must understand it THAT IS LUPUS.....and if there is ONE thing that LUPUS feeds on is a tired body and a stressed out one at that.

    YOU HAVE got to help yourself relax and take this in stride.

    Ther are many of us who are VERY HIGH DOSES OF MORPHINE for the pain and have every shed of dignity taken from us over the years dealing with this disease.
    YOU CAN NOT let the BAD overshadow the POSOTIVE. I know you're saying what posotive>>???? RIGHT

    WEll you have to look for the POSOTIVE in this situation.....its way to easy to find the negative.

    DO something for youself, go to a SPA, Volunteer at a clinic for those with LUPUS and see that you are not alone

    I know these times can be very trying but you are stronger then the disease....your mind is stronger than the disease and the medications they give you.

    I hope today is better for you and that maybe seeing the kids trick or treating may bring a smile to your face today, sometimes that is all it takes is ONE SMILE to turn your whole outlook around !!!!!!

    Hang in there my dear for better days are just around the corner.

    It is true it is THE DARKEST BEFORE THE DAWN !!!



  3. #3
    Join Date
    Aug 2006
    Thanked 3 Times in 3 Posts


    Hi, Stephanie. i know this is a really frustrating and upsetting time for you. Lupus can be a vicious cycle - chronic pain can lead to depression and depression makes it harder to cope with pain. One thing to consider - you're never too young for menopause when you have lupus. Both the disease and some of the medications can cause early menopause from premature ovarian failure. So if the hot flashes continue, you need to get your hormone levels and thyroid levels checked just to be on the same side. Low-grade fevers are pretty common in lupus and they can also cause hot flashes.

    I know you're feeling overwhelmed and desperate right now - you need to reduce your pain levels so you can think straight. If you have pain meds, go ahead and take one. If you don't, call your doctor - tell him you took a bad fall, and get him to call you in a prescription. Try icing your shoulder and knee for short periods - ice is better when you have active inflammation and bruising. Try to stay off your knee as much as you can today - is there a couch or something downstairs where you can lie down?

    Stephanie, when you're in a bad flare and in a lot of pain, things can seem almost hopeless. But you will come out of the flare and start to feel better. So for now, just focus on getting through today, reducing your pain, and reducing your stress. You are stronger than you realize - you can get through this. You may have lupus but lupus does not have to have you.

    When I'm in the worst pain, I put on my favorite music and listen, or watch a really funny movie on DVD. A lot of managing chronic pain is learning to accept it and distract yourself from it. Pain is llike a self-fullfilling prophecy, the more you think about how much you're hurting, the more you hurt. This is where a pain specialist can help, so you should consider asking your doctor for a referral to a pain clinic for help. If it goes untreated, chronic pain can become disabling in and of itself, so this is an area where you need to take action early.

    I will be sending prayers and warm wishes your way today.

  4. #4
    Join Date
    Sep 2006
    Thanked 3 Times in 2 Posts


    I have so many times I feel this way. Like Lupus is some awful sneeky criminal that stole into my life one day uninvited and took so much away from me. No, it's not fair. but what is????? We have sports figures that make the amounts of money they do, and teachers and social workers who live under the poverty level. (by the way....a certain new QB for Tennessee titons, used to be big shot quarterback for UT) was an ex student of my husbands at one time when he wa a principal. this kid was dumb and LAZY. He made sure he qualified for sp. ed. every year so that he could play football and not worry too hard about academics. Was so arrogant (in HIGH SCHOOL) that he refused to look anyone in authority in the eyes. Everytime he got in trouble, he'd look at the ceiling and say, "Just call my momma" who would rush down there and raise the roof about "pickin on mah baby".....we wonder just how many people UT had to employ to get him to pass his classes so he could play football.
    Now, I love sports, y'all. Adore em. I'm a crazy football fan. But people like this make millions of dollars while we beg for disability?????? I have given up on "fair." I will do what I can to get what I need, and when I get mad at Lupus, or life, or just stupid people in general, I grab a pillow, go outside, and scream into it as loud as I can. (the dogs look at me strange, but who are they gonna tell?) It's important to vent. You have a right to be angry. Just don't expect fair.

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