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Thread: A public apology

  1. #21
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    Quote Originally Posted by pberggren1 View Post
    You are certainly not a b**** Deb. Your are too kind for that. I think we understand you better than your own family.
    Phil, It is EXACLTY what I was going to write to Debra:
    Debra, you are good and kind and compassionate and funny and we all love you
    and yes, for me2, my weggie family here understand me much more then my family.
    I am not having bursts of talk or anger, I just become tired and withdrawn. but my family dont understand it
    thank you all for being here. I love you
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  2. #22
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    The problem is often that all these things such as irritability, moodiness, fatigue, short fuses, withdrawn behavior, forgetfulness and foggy mind, etc., also happen in the non-Weggie population and are just written off as that person is going through menopause, getting old, other life changes, or is just plain cranky..... since it happens to others, we are not given special consideration. Those of us who are getting older AND have Wegs have a double whammy, of course. But for those who are too young for these things to be happening, the families should understand that the moodiness or other different behavior is related to the illness. I guess we just have to stick to our guns and not apologize for this behavior... if they aren't willing to recognize or understand it, that is their problem. If they would just have some faith that what we say is true, that the disease and the meds really do affect us this way.
    Anne, dx'ed April 2011

  3. #23
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    Quote Originally Posted by annekat View Post
    The problem is often that all these things such as irritability, moodiness, fatigue, short fuses, withdrawn behavior, forgetfulness and foggy mind, etc., also happen in the non-Weggie population and are just written off as that person is going through menopause, getting old, other life changes, or is just plain cranky..... since it happens to others, we are not given special consideration. Those of us who are getting older AND have Wegs have a double whammy, of course. But for those who are too young for these things to be happening, the families should understand that the moodiness or other different behavior is related to the illness. I guess we just have to stick to our guns and not apologize for this behavior... if they aren't willing to recognize or understand it, that is their problem. If they would just have some faith that what we say is true, that the disease and the meds really do affect us this way.

    I agree that our meds and health issues can have very significant impact on our moods and behaviors but I think the important factor is how we understand this and how we accept responsibility for our actions and behavior. We may not be able to control our feelings and moods all the time but we usually do have a choice on how we behave or react to events and our feelings about them.

    I think everyone has times when they say or do things they regret because they were having a bad day or bad time in their life but we should then be able to recognize when this happens and admit that we acted badly and apologize for it. Then strive to do better in controlling our actions.

    We might need some psychotherapy or psychiatric help to help learn to do so. However, if we have lost contact with reality and are experiencing a psychotic episode, we may not be able to do so till we attain a remission from our psychosis and regain contact with reality.

    I know major illness, and the meds I take, like chemotherapy and prednisone to treat them, have had a significant impact on my mental health. From what I have read this is not unusual, and probably the norm for almost everyone. Learning to understand and accept this and adjust to these changes is large part of adjusting to our "new normal."
    Knowledge is power! Wisdom is using it to make good decisions!

  4. #24
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    I agree with all that, drz. But I live alone and don't have to explain or worry about my moods and behaviors as much as people who live with families. I think that must be extra difficult, when the family members don't make much effort to understand. However, I think it is very good when, like Alysia, we can have the self-control to avoid lashing out in anger at our loved ones.
    Anne, dx'ed April 2011

  5. #25
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    Personally I don't know where i'd be emotionally without the support of this forum and its members.

    I can be away for months at a time and come back and its like nothing has changed, but in a good way.

    This forum is a life line and a resource and we all come from varied backgrounds, experiences and emotions that drive us. We're not always gonna get on with everyone and i'm ok with that .

    Marta you've always been an inspiration to me and although I talk to you on facebook it would be a great shame to lose you from the forum.
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

  6. #26
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    I think as others have pointed out it's good to know how the illness and drugs can mess with our minds and have strategies in place to cope. I for one know that telling my friends to help me is a help in times when I slip quickly into a state of paranoia for instance. I am lucky to have good friends and I guess when I am feeling ok I get a chance to help them too. I have medication on hand when I feel anxiety attacks coming (valium helps me) I use it seldom but it's there. I have a counsellor and will be starting counselling sessions in a couple of months again. This is someone I have been seeing on and off for a few years and she is very practical and helps me cope. Now I have a Psychiatrist to help me with this Prednisolone induced whatever it is issue.

    So I think yes ... we can put processes in place to help us and yes we need to learn coping strategies. I always apologise if I did something stupid. Luckily I don't get so bad that I can't remember what I did or said or wrote.

    I am fortunate to have a supportive husband and supportive friends. I feel sorry for those who don't, it must be very difficult to cope. And I fully agree having this forum is a God-sent. It sure calmed me down a heck of a lot a few weeks ago when I was first diagnosed.

    Hugs to all and thanks for all here who are so supportive
    "Slow and Steady wins the Race"
    All the best, Inge

  7. #27
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    So I managed 2 weeks off here. Ha ha.

    Thanks to all of you who have written me such wonderful notes, both here and in private. Thanks Andrew for not listening to me. You are and forever shall be, my other family.

    Here is the end product of the PJ Day effort this year (which was one of the big stressors in my life just previous to the onset of this thread, along with a flooded basement and tenants, and on and on...) But all's well that ends well, or so I hear PJ Day 2014 ? Feb. 28, 2014 | Find The Common Thread Foundation (It's a heavy web page full of pictures so it takes a few moments longer to upload.)

    Again thanks for not letting me kick myself out of the family. Lots of love to each and everyone of you.

    Marta

  8. #28
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    Quote Originally Posted by marta View Post
    So I managed 2 weeks off here. Ha ha.

    Thanks to all of you who have written me such wonderful notes, both here and in private. Thanks Andrew for not listening to me. You are and forever shall be, my other family.

    Here is the end product of the PJ Day effort this year (which was one of the big stressors in my life just previous to the onset of this thread, along with a flooded basement and tenants, and on and on...) But all's well that ends well, or so I hear PJ Day 2014 ? Feb. 28, 2014 | Find The Common Thread Foundation (It's a heavy web page full of pictures so it takes a few moments longer to upload.)

    Again thanks for not letting me kick myself out of the family. Lots of love to each and everyone of you.

    Marta
    welcome back Marta

    when one is growing in the middle east (me) PEACE is the most welcome "feature" everywhere. thank you for that

    thanks for sharing the pics from the PJ day. looks awesome
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  9. #29
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    So I managed 2 weeks off here. Ha ha.
    Soooo...MOM...when's our next adventure?! LOL! Are we there yet? Is it still going? Are we still going? YOU keep going sis!!!! Toooooo much fun!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  10. #30
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    Glad yr back Marta
    Life isn't about how you survive the storm, but how to dance in the rain !

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