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Thread: Your Thoughts on Dying.

  1. #51
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    Quote Originally Posted by Jack View Post
    Recent experience has reinforced my view that life is only worth living up to the point at which quality of life has dissappeared. I have recently witnessed many cases of people with broken minds and bodies who were never going to make any sort of recovery that I would think of as acceptable. Should I ever reach that point, I would wish for no further treatment because I would consider that my life was over. To me, that would be acceptable since I have been living on borrowed time for years and this would be a natural end. I have even planned my exit route should such an eventuallity occur - I think that if I were to refuse food and medication, I would not have long to wait. All those close to me know that this is my wish and would not intervene.

    I feel most for those I would be leaving behind and have tried to keep everything in order and have made financial provision for them. I hope I have prepared them to handle the emotional side of loss too.
    I send you love and a big hug...I am soo grateful to have met you and I too have made my wishes known ..I have an advance directive...My family may not agree but it is my wishes and I hope lessens the burden of those hard end of life decesions....I hope when the good Lord takes me I am asleep dreaming of the beach with the ocean tickling my toes...stay strong and may God let us keep ya alot longer...your are a tremdous support and guide in this nastey WG disease

  2. #52
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    Quote Originally Posted by JanW View Post
    I do not want to die. I am afraid of suffering and pain with death and I do have young children I would like to see live to adulthood. I want to have grandchildren. I want to outlive my mother and my grandmother.

    I think that WG reminds me that we are all broken. Even when you are whole you could be, potentially, at any time, broken, physically, mentally, spiritually. I think that it's good to be able to look into that abyss and and say, "I'm still here." It has been my horrendous misfortune, and great gift, to have this disease. Easy for me to say, and feel, because most of the time I feel pretty good except for my ankle. I think of all of the others who are broken out there that I don't even know about, like many don't know about me, and I try to be kinder, more patient, more empathetic. I wonder about the pain they are hiding.

    I have had a good life so far; I have no regrets. I have never once thought "why me?" with this disease. Why the hell not?

    Needing the doctors I do need, I am grateful that I have the insurance that I need and I live right outside of what I consider to be one of the greatest cities in the world. I remember right after 9-11, we all had signs that said I <heart> New York more than ever, and that's still how I feel. We were all so, so, close to death then...so much closer than I feel now.

    There have been times in my life when life went from one thing in an instant to another: "Your father' is dead" "I do" "It's a girl" "It's a boy" "The blood test is back and shows that you are positive for Wegeners" "You will need surgery to fix your windpipe -- you do not have even two months to wait." Everything goes quiet and all you can hear is the blood rushing through your veins. And even in that moment you know the news is not all bad or its not all good. It's just the first step into a new world. I hope that death is like that too.
    Wow, thanks for that, that was amazing to read, made me cry though. My husband has WG and we have a 1 year old daughter. I've been so devastated by this and frightened what the future holds in store. But I guess I should keep my chin up and thank god for each day as it comes.

  3. #53
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    Quote Originally Posted by Doug View Post
    Carly, well put. I find I am much more emotional than I was before, and these formerly taken-for-granted occasions (perhaps even people!) take on a new importance, a new depth of love that just spills over in tears of joy. For being alive.

    LisaMarie, you will be pounced on for expressing Christian beliefs on this forum (it has been my experience). I've wondered if we, Christians, need a separate link entitled "Christians talk about faith and WG- stay away if you can't handle it" because many of us regard our faith as a big part of our healing- and feelings about death, yet non-Christians seem to think reading these things is aggression against them rather than a simple expression on one's faith.

    Faith and healing: I can't separate the two. Yet there is a rule on this forum not to bring religion or politics into discussion. Posting here is to agree to those conditions.

    Ordinarily I would post this sort of note as a private message, but there is a generally hostile attitude against Christians on this forum that I think reveals a bit of hypocrisy when other belief systems (from atheist to you name it) come up in comments, without challenge. "Respect my beliefs, but your beliefs are offensive to me, and I won't have anything to do with them." Something like that.

    There are too many valuable things posted on this forum, beyond this sticky issue, for me to stop coming back to it, but I do believe this will be my last post.

    (P.S. I may disagree with some of you on matters of faith, but I do love you all, and am encouraged by your victories, saddened by your set-backs. When you need it, I even secretly pray for you.)
    Hi Doug,
    I have no issues with religious beliefs however I do get a bit annoyed with generalisation and stating there is a general hostile attitude and you will be pounced upon is a bit over the top. Sometimes rules are in place for a reason or from experience. This group is a united group whatever our beliefs and to split us by our religious beliefs would be very sad. This is a support group what ever religion, culture etc.. and as such should be respected for the initial reason it came about.
    Col 23

  4. #54
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    I don't think that people get pounced on for religious beliefs (and as Jack says I've seen many "You're in my thoughts and prayers" pass with no comment at all.

    I am, by the way, a Christian and am more bothered, actually, about people on here who talk about visualization, positive thoughts, and other types mental things that one can do to maintain remission or at least control over the disease. I think that these things can make you feel psychologically better about having WG, however, it's the flip side of 'well, if you're negative, you'll always be sick' and "if you're positive you'll always be or mostly be well" that I don't care for. Many people who are horrible inside lead perfectly healthy lives. Just because I don't believe that positive thoughts play much of a role in changing the course of this disease (or any), doesn't mean that others shouldn't or talk about it.

  5. #55
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    Quote Originally Posted by Jack View Post
    Some strongly held views expressed there. I hope that if other members disagree they will just let it pass.
    Rather than repeat my own post.

    Perhaps part of the discussion in this thread? - http://www.wegeners-granulomatosis.c...h-section.html

    (Sorry - I'm starting to act like the Thread Police! I'll shut up now. )


    .
    Last edited by Jack; 07-14-2010 at 02:52 AM.

  6. #56
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    Ive had the day from hell today and I am very negative and as I have expressed before I just try to be a bit more positive and visualise getting better and hope that works for me psychologically and I shared that.
    I have never suggested that if you have a positive attitude your will get better or if you are negative you wont. I have also spoke about knowing there is no cure and being realistic.
    I do not judge anyone for there religous or spiritual views I just did not want to be included in a generalisation.
    Col 23

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    I hear what your saying JanW. I try to be positive and think positive...it is hard at times and then there is the guilt that I feel ...how come I am not feeling better yet??? Because I have been thinking positive??? Well just being honest. Keeping it real.

  8. #58
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    I wasn't speaking about anyone in particular, but I do have to say that if you said "the power of positive thoughts" and the "power of prayer" I believe that the former would be viewed more favorably than the latter on these board when they are really just two belief systems.

  9. #59
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    I also get annoyed at generalizations about who feels what about which religion. I have close friends of all faiths and we have mutual respect for each others' beliefs.

    Doug, I found Lisa Marie's post to be a lovely expression of her faith and its importance in sustaining her. I've suggested before that you start a blog for Christians with Wegs. You're a gifted writer and can engage people in good conversation. I understand how important your faith is to you. A blog would give you the opportunity to share it with others who are like-minded without concern for stepping on toes or being hurt. But please, no more "warnings" to other members. That feels divisive to me.

    Col, rock on. You expressed exactly how I feel.

    Jan, I totally agree about how positive thinking can sometimes be used as a stick to beat oneself. I've had friends who implied (or outright said!) that if I just thought more happy thoughts I never would have gotten Wegs or at least I'd be cured. As if all suffering could be eliminated so easily. My philosophy is to try to keep my mind positive in arelaxed way, not forcing myself to smile or recite happy thoughts when I'm actually not happy. Having said that, I truly don't mind if others choose to do it, I only mind when they tell me Wegs is "my fault." I think you and I are on the same page.

    Everyone, let's remember first and foremost that we are all in need of a safe place to share. Of all people, we Weggies know that life is too short for conflict and strife.

  10. #60
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    Quote Originally Posted by Sangye View Post
    Everyone, let's remember first and foremost that we are all in need of a safe place to share. Of all people, we Weggies know that life is too short for conflict and strife.
    Hear! Hear!
    Weggies UNITE!!

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