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Thread: Hello

  1. #1
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    Default Hello

    Hello, I am new here. I decided to look for a support forum today. I think its mostly because it helps to know that you are not alone. It helps to have validation that others go through the same thing as you, as terrible as it is that others go through these same things. I have had autoimmune problems since I was a teenager. I am now a mother of 5 children of my own, its very difficult to be a mom, people do not see the pain on the outside, so they do not get it. I am super lucky to have a supportive husband. I generally try to maintain a positive attitude, and this can cause people to believe I am not ill at all. Been through alot of rough times with this disease, figured it is probably time to talk to others about it, maybe I can help people who are going through things I have been through.

  2. #2
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    Default

    Hello iceprincess,

    I have not told anyone of my dx except my son who lives with me. Yes everyone always says how good I look and after having had CFS and FMS for 25 years I am used to this. I find it helps to look good and try to have a mental outlook that is similar, always a challenge. I am newly dxd though and and doing pretty good on Plaquenil.
    Have you seen a rheumy yet, do you have a dx and are you on any meds?
    Yes, it must be hard with 5 kids. Children look to the Mom to form their attitudes I have heard, that is a lot of pressure for us to pass on a good one to our children. And forums like these *if people actually respond to you* are helpful. The moderators are wonderful. I have heard from very few members perhaps they are too sick to post.
    Heron

  3. #3
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Default

    Hi Iceprincess;
    Welcome to WHL. I am so sorry to hear that you are dealing with this disease while trying to raise five children. I am very happy to know that your husband is so supportive. That actually makes it a bit more bearable. We've all had to deal with those who don't believe that we are sick unless we look like we are on death's door, in a wheelchair, deformed, full of open woulds and/or sores, or crawling on our hands and knees. It gets to be very aggravating at times. So, we often just tell people that we are "OK", just to avoid their callousness.
    But, we do understand what you are going through and how difficult this disease can be. We are here to help you in any way that we can and as much as we can.
    Also, WeHaveLupus is also on Facebook if you want to just chat with others who are living with this disease. It is also run by me!! Here, we provide research, support, answers, advice, and compassion. So, you will get the best of me in both places (lol). Again....welcome!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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