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Thread: Losing my family because of Lupus

  1. #11
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    I just wanted to post a reply to your E-Mail. My Dad has Lupus and he thinks that just because he was able to work with it up to retirement that mine can't be so bad. Both he and Mom are in denial about my Lupus. At one time, they were going to help me buy the supplements, immune boosters, etc. that I needed. But that quickly feel down the wayside when they had other things to buy. I am not mad about it, but wish I had more
    mental support.

    Boyfriend thinks I should work more and have a full time summer job. He doesn't understand Lupus, etc. and it has been insinuated (not really said outright) that I am at times lazy.

    I feel for you. We get caught in the Catch-22. We are damned if we do, and damned if we don't. I know what Limboland is all about, and it's not going under the Limbo bar.

  2. #12
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    man I know what you all are saying. My family thinks i'm a fake, one day i can go to the club next day i dont feel like having lunch with someone. lol I have to laugh sometimes to stop from crying.

    Lupus hasn't pushed my family away but they can say some rude and insensitive things. They just dont want to understand sometimes and have temporary amenisa when they want me to do something and i'm to tired to do it.
    When it comes to jobs sometimes i want to work more than parttime but i worked fulltime before and i couldnt keep up then i had to quit my job beccause they didnt want parttime workers. I just deal with it and say to myself one day i'll be able to make the money i want.

    jessica

  3. #13
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    Hi,

    I understand about the pain that is caused from this disease and use meditation to help in this regard. And a combination of tylenol and advil around the clock, it seems to take the edge off the pain. But steroid drugs have help me the most with the pain and I feeel almost normal when taking them.

    I know what you mean about people thinking one is lazy there are days I feel good enough to keep up with my housework and etc. And then there are days which it is all I can do to get my self cleaned up for the day. Some days I am feeling good and other days i feel as though I cant go on this way. But life is to be lived but we must also know when to take it easy and give our bodies rest.

    If people do not understand then that is there own shortcomings not ours.

    Kamillah

  4. #14
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    Wow, we've all been there at some level, at some time.

    May gathering together like this help all of us find the strength to stand above the fray - WE know what we can and cannot do on any given day, and WE know in our hearts that we live every day the fullest that we can.

    One choice I hope you consider carefully, mightyblocksman, is those wonderful children of yours - who will be hurt if you deny them their grandparents? The grandparents or the grandchildren? If you show love and compassion, and help the kids understand what lupus is for you, and how you are living to your best every day with that condition, then maybe their love for you can help their grandparents learn. If not, the children will eventually decide whether or not they want to see them again. They will know love in your home, and want to be in that environment.


    I send you and everyone who's responded to your anguish a cyber hug and all the strength my shoulders can bear. We are a circle of support together.
    ~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

  5. #15
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    Mightyblocksman -
    Did you get my PM? We would all love to hear from you!! Hope you are doing well, and family issues have subsided some.
    Please let us know you are OK....Come and dump all your garbage if you need to....No one has to do this alone!!!
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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