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Thread: lupus/ lung disease

  1. #1

    Post lupus/ lung disease

    I HAVE BEEN LIVING WITH LUPUS FOR OVER 18 YRS OF MY LIFE. SINCE I TURNED 50 YRS OLD MY HEALTH IS GETTING WORST. LIVING WITH THIS DISEASE IS VERY DIFFICULT. I JUST HAVE A HARD TIME MAKING MY FRIENDS AND FAMILY MEMBERS UNDERSTANDING WHAT I FEEL. BECAUSE THEY LOOK AT ME AND I DON'T LOOK SICK PHYSICALLY. WHEN I'M ALONE AND IN SO MUCH PAIN I JUST CRY JUST TO RELIEVE MYSELF.
    YOU NEVER KNOW ONE DAY TO ANOTHER AND I DO HAVE FAITH AND I STAY STRONG BUT, WE ARE HUMAN AND WE DO BREAK DOWN FROM TIME TO TIME.

  2. #2
    Join Date
    Jan 2007
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    Upstream from the Big Apple
    Posts
    1,516

    Re: lupus/ lung disease

    Hi Mich! I know exactly how you feel. I was dx'd in '96, so I guess that's 14 years (yikes, I hadn't thought it was that long). I have a good doc who is pretty helpful with the pain end of thigs, but I still hurt all.the.time. I guess there's no way to get rid of it completely. I have come to realize that no one can 'get' what it's like to live with a chronic disease unless they have to deal with it as well. My mom had RA from age 18, so I only knew her that way, but I never really understood the challenges she had until I got tagged by lupus.

    I have days that being strong is just not an option. I have a lot of CNS problems and I think dealing with the depression end of it is maybe the worst. So, when it's one of those days, I become some sort of hermit, even in my own house... I just shut down. Not a great solution, but the only one I have that keeps me from being a weepy mess with every word.

    Welcome to the boards, you'll be among others who get it.
    Only an expert can deal with the problem

  3. #3

    Re: lupus/ lung disease

    Dear annie,
    thank you for sharing your story with me. It makes me feel better knowing that you understand what i'm going through. I do appreciate. I have ra also and that is so painful i have lived with for years and years. Again just another one of my problems to deal with day in and day out.
    Thank you
    mich

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