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Thread: Just waiting on my diagnosis. info for spouses?

  1. #1
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    Default Just waiting on my diagnosis. info for spouses?

    Hi everyone, I've been lurking here for a while. Thought I would finally register and introduce myself even though I don't "officially" have lupus yet. I've had symptoms for about 5 years and just recently my flares have gotten worse. My ANA came back negative, so they are testing for the DS-DNA right now and some other things. Luckily my Dr. is determined to get to the bottom of things. Last week I went in with a full typed page of my symptoms and said, this is not normal for someone that just turned 30!! She agreed and so now we are just trying to figure things out.

    Is there anything out there I could print or something for my husband to read about dealing with a spouse with Lupus? He's being very supportive, but I feel bad when he comes home (he works out of town for 5-10 days at a time) and the house is a mess.

    Also, any tips on how to keep going as a mom? I have a 3, 5 and 11 yr old, and the little ones seem to be acting up since I can't be very active with them during a flare.

    Thanks!

    Wendy

  2. #2
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    Welcome, Im sorry you are dealing with all of this
    I was on the lupus spectrum for 3+ yrs and managed it with diet and exercise before things got bad last November and I was formerly DXed in Feb of this year. I am 31 and have a 12 year old son that I raised for 8 yrs as a single mother before marrying the most amazing supportive man in the world. Its hard to explain to them what you are dealing with and my son definitely has a reaction to my declining health. We are currently in therapy for some coping skills because we are so bonded. The Spoon Theory is what I gave everyone at my office who was curious becuase "i dont look sick" just fat and tired
    Best of luck and be patient with yourself!


    Hugs,
    LenaT14

  3. #3
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    hi wendy.
    quite a few of the ladies here found this interesting.

    http://www.butyoudontlooksick.com/ar...e-miserandino/

    i like this other one

    http://notdoneliving.net/openletter/cfsfibro


    hopefully one of these will strike a cord with your husband.
    i am a male with lupus.
    he can send me a personal message if it is easier for him to talk to a male.

  4. #4
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    Wendy,
    My husband like to research, so he's always looking up the latest medical information about autoimmune diseases. He sends me the links, and I sometimes post them here. I also send him links of updates, etc. that I get from The Lupus Foundation, The Sjogren's foundation, etc.
    Jeff feels helpless that he can't just do something to make me feel better. Men are that way - they want to do a concrete action to solve a problem.
    It makes him feel a lot better that he feels knowledgeable about what is going on with me. I think that he's always hoping to happen upon that study that figures out the cure!
    Hugs,
    Marla

  5. #5
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    hello wendy welcome to whl it can be hard on family to accept that you cannot do the things you once did especially children that expect us to be wonderwomen but give them time to adjust and get used to the idea. and look for activities that you can do which is easier for you this is what i did goodluck

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