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Thread: Sometimes it just honestly sucks !!!

  1. #11
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    You're most definitely not alone. We have all had some experience with people's reactions to our disease, and the myriad of emotions that comes along with it. Prednisone makes us all over the place and on top of that, the disease limitations in of itself can make us depressed and emotional. I've been off prednisone for a long time and I find myself all over the place emotions wise. Things upset me much more than they did before. Depression hits pretty darn hard all the time. My doctor recommended I take an anti-depressant given everything that I was going through but I didn't like it. I'd rather feel honestly. As a writer, that's what I need!

    People will never understand our disease unless they take an interest in it. I have had a few friends who sat down and researched my disease so that they could be more understanding of what is wrong with me. The most touching gift I received this Christmas was a friend bought me a bunch of scented hand sanitizers and a little holder for them because she knew I hated regular sanitizer and knows my medication makes me attractive to germs. My own husband seemed mildly clueless until his aunt made him realize things were more serious than he was taking it. My condition itself isn't that advanced but now he's hellbent on making sure I don't get worse.

    You're with us. We are all together. We are in this together. Come here and vent away!!!!
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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  3. #12
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    I think most of us can relate to what your feeling at I can for sure. Things will get better when the pred comes down for sure, but it can be hard to keep up with your peers no matter what age you are. I am having a hard time accepting that I can't always do the same. We are in our late 60's and retired. We were always very active, however this wegs is making it tougher to keep up with our peers. I of course have gained weight as originally had huge does of pred as I had gone deaf. I am still on smaller amounts and struggle to lose. I know that would help, but harder to do now. I don't think others understand the disease as all I hear is you look great! I haven't been great since last spring, however is getting better. I always look healthy so how can they understand, don't think they can. I was finally dx 9 years ago this month, some very good then some down hang in there.

    Mary

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  5. #13
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    "You look great!" can feel dismissive, as if we must be OK and not sick if we look great, so they don't need to think about our illness any more. But I guess the best thing is to take it positively, and be glad we look great, even if we don't feel great. I find myself saying "you look great!" to people I know who are recovering from cancer, etc., and they don't seem annoyed, but maybe I should think about it a little more before saying it.
    Anne, dx'ed April 2011

  6. #14
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    I do agree that we need to take it more positive and sometimes do. I think for me it feels like I am being dismissed when do something as just not up to it that day and then the "well I got to tell you that you look terrific" comment is made. I understand it isn't meant to me dismissive, but part of it is that we already feel back about not doing something. I went through having cancer and did like to hear I looked good/winning! I think your fine saying that to people with cancer and be sure to how are you feeling?

  7. #15
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    I may have mentioned this before, but shortly after I was dx'ed with this disease, I had a sister-in-law going around telling family and friends that "it wasn't a big deal". She told enough people such that it got back to me. I'm not sure how she felt qualified to make such a statement. And, that was after I had just got out of brain surgery and was still in the ICU. Some people just aren't worth having as friends or relatives. She lives in your town, Nikki!

  8. #16
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    Wow! That is a lot of nerve and your so right not worth being around her. Who's town, mine? Mary

  9. #17
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    Nikki's town, Santa Rosa, CA? My sister lives near there.... I hope neither she nor Nikki run into this woman! Although unfortunately, they are everywhere, I guess. I don't know why people without medical degrees have a sense of entitlement to pass judgement or make statements about rare conditions they know nothing about. I imagine they do the same thing in other areas of life, drawing conclusions and spouting them them out, when they have no qualifications and shouldn't be meddling in the lives of others. I guess it is a mark of insecurity to have to always think you are right and know everything about everything.
    Anne, dx'ed April 2011

  10. #18
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    I think some people need to be the center of attention and to many people messing over Nikki may have been to much for her.

  11. #19
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    Quote Originally Posted by jakekell View Post
    I think some people need to be the center of attention and to many people messing over Nikki may have been to much for her.
    Oh, I don't think it was really about Nikki.... vdub just mentioned that that relative who said his illness was "no big deal" happens to live in her town, which is Santa Rosa, CA. I agree, these big-mouthed people like to be the center of attention; that is a symptom of their insecurity, I feel ..... I just think it is a fairly common trait among humans and we just have to tolerate them, though they should be set straight when they mouth off like that, and we don't have to be their friends. On the other hand, they can teach us how not to be, and there are also plenty of respectful and more reserved people who don't act like that.
    Anne, dx'ed April 2011

  12. #20
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    Santa Rosa... She's a strange duck for sure....

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