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Thread: Better introduce myself :-)

  1. #11
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    Thanks for the compliments Desley, although they are not warranted. There is not much we as 'outsiders' can do and I have no doubt I am at times terribly annoying (ask Yol as I try to instigate her to take charge of the situation and 'help herself' as much as possible. With this I mean lifestyle changes, educating herself on the disease, exercising, recognising triggers etc.

    It seems to me that having a good understanding and control of yourself is/can be a great help in managing this.

    Where did you do the course on Chronic Illnes? This may be another good option for Yol (and myself). I am always keen to learn more.

    And yes, I love the Hills! It is peaceful and serene up here, although the kids tend to wreck the serenity ;-)

    Debs

  2. #12
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    She has no idea how awesome she is and just how knowing someone is there helps! I like how she pushes me to find out about it because even though I whinge I know I have been better off knowing about the disease etc. Knowing that someone else is in some way going through what you are is an immeasurable amount if help and reassurance. Thanks guys!

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  4. #13
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    Cool Living with a cronic disease

    It was held in Rockingham and I believe they have more of the six week course. Why not contact her
    Kellie Wilson
    Living Well Coordinator
    Rockingham Kwinana Division of General Practice
    PO Box 252 Kwinana WA 6966
    22B Pace Road Medina WA
    Challenger Lodge 17 Read Street Rockingham WA
    T: (08) 9439 9500 | F: (08) 9419 4805
    www.rkdgp.com.au
    Good luck
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

  5. #14
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    Hello & Welcome YollyDolly and Debs - two sister who are so lucky to have one another I am so glad that you both are here and you've already met some of our members and seen how warm and compassionate this place is.
    I am also happy to hear that you are both educating yourselves about this disease, Debs to be supportive and YollyDolly to become and informed patient with the ability to be her own advocate.
    Please feel free to roam around our site here, read the stickys and join in on any conversation that you like. Again....welcome to you both

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

  6. #15
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by Desleywr View Post
    A beautiful place! Welcome it is so nice that you are supportive of your sister. I have just finished a six week course for people living with a cronic disease. They main point most of us had was the lack of understanding and support from our friends and close family .... You are the rarity thank you and I have a great deal of respect for you and your support for your sister.
    There are many people in this world who do great and noble things. At the top of that list is a family member or friend of a person with Lupus who decides to be supportive, and tries their best to understand. The person who even if they cannot fully understand Lupus, sticks with you anyway. When I was first diagnosed, I had no support from anyone. The fear and isolation was overwhelming, and I almost didn't make it through that particular part of my life. If I had had just one friend or family member who tried to understand and be supportive, that dark part of my life would have been a lot brighter.

    All of you family members and friends who stick with us, you are giving us an irreplaceable gift. It means the world to us.

    Rob

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  8. #16
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    Thanks for all the welcoming and supportive messages. I feel humbled. I know I cannever fully understand Lupus, as I do not have it, but I will ontinue educating myself on it. I have a huge amount of respect for all of you living with this disease and take my hat of to you for the support you show eachother and the obstacles you all have to deal with.

    I feel like I am slowly getting to know you all a bit, but there is also a small element of guilt being on here knowing I am so lucky not to be a 'sufferer'. Hence, I don't post to much in subjects I obviously do not have experience in.

    In saying all this, we all have cards that are dealt to us that we have to manage & live with, including myself, but mine just happen to be from a different stack. (what I am trying to say here is that my life may seem ideal on this forum, but it isn't)

    Debs

    Debs

  9. #17
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    Quote Originally Posted by debstar View Post
    Thanks for all the welcoming and supportive messages. I feel humbled. I know I cannever fully understand Lupus, as I do not have it, but I will ontinue educating myself on it. I have a huge amount of respect for all of you living with this disease and take my hat of to you for the support you show eachother and the obstacles you all have to deal with.

    I feel like I am slowly getting to know you all a bit, but there is also a small element of guilt being on here knowing I am so lucky not to be a 'sufferer'. Hence, I don't post to much in subjects I obviously do not have experience in.

    In saying all this, we all have cards that are dealt to us that we have to manage & live with, including myself, but mine just happen to be from a different stack. (what I am trying to say here is that my life may seem ideal on this forum, but it isn't)

    Debs

    Debs
    NEVER feel guilty for not having this disease! You actually have more strength then many of us because you come here voluntarily. You come to help your sister not because you need any advice from us about your health. When you get this disease you simply HAVE to find answers. That is why we come. You, on the other hand, came so you could understand your sister. You are more strong then many of us.

    Of course your life isn't perfect. No one's is. You have your own issues it just appears that your's does not have a name. Although we enjoy finding each other because it makes us feel less alone I can say, without a doubt, that not one member here would wish you to have this disease. We respect what you are doing and respect you for that. Feel free to ask questions or chime in. Just because you don't have it doesn't mean that you don't want to understand it. You do want to understand or you wouldn't be here
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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  11. #18
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    Hi Debs,
    So good to see someone being so supportive of a family member with Lupus. I, luckily, am in the same boat as your sister, by having fantastic family members who are so supportive. I also have a great bunch of friends and work colleagues who are all so supportive and understanding of the limitations this disease places on our lives. Unfortunately people aren't as lucky as your sister and myself like tgal and rob said but at least everyone knows they can come here and get the support they need!!
    Diagnosed with SLE and Antiphospholipid Syndrom - June 2010

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  13. #19
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    My col étude have been great so far as this is the first time it's all really flaring up since I was first diagnosed and most of tha family that I inform about it are pretty understanding but not many have taken to researching or educating themselves which is a big help because then you don't feel like you are the only one that understands what you are going throu and sometimes, well most of the time Deb is telling me more about the disease then I know. But I have been doing heals of research so getting to be a smart one onthe topic thanks!! xx

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  15. #20
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    You just need to listen to your sister Yol!
    xoxox

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