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Thread: Your Thoughts on Dying.

  1. #141
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    Quote Originally Posted by gwenllian111 View Post
    What a thread this is. It's the first time i've read Jack's post and this thread. Inspirational. :/

    I always thought I could accept my death, but now that I have children and a husband, it terrifies me. It's not the process of dying, it's the people i'll leave behind. Awful death anxiety.
    Glad you found it and enjoyed their wisdom.

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    Jack, I miss him still and Al. Since getting wegeners in 2006, I have lost 6 healthy friends to stroke, heart and cancer. One of my good and oldest friends is struggling with breast cancer which spread to her bones, yet here I am. While all these lovely people were enjoying their healthy lives, I was struggling with pain, chemo and pred, yet here I am. I have been somewhat in remission in the past few months and feeling good. Is this not life's little irony?
    Gwen, is this the picture of the little one we know from birth?
    Jolanta

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    A couple years ago a friend who was the epitome of health and strength was out cutting down trees with his father. One of the trees landed on him and killed him. Before that, if anyone had asked our common friends which one of us would be more likely to die sooner they would have voted for me hands down. I would, too. Everyone says things like "No one ever knows when you'll die" but those of us who live like this are probably the only ones who really believe it.

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    I too would have been voted off this 'island' a long time ago due to illness and seemingly endless rounds and types of treatment. A couple years ago my brother , who had virtually never been sick, got cancer and was gone within a few months. I still can't believe it. Who stays and who goes is a very deep mystery. When I go, I hope to look into that. If I can find Al or Jack they will probably have the answer for me.

  5. #145
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    Default Re: Your Thoughts on Dying.

    Last night I found myself thinking about this old thread and wondering if I could find it again. I find it somewhat ironic that it was started on the day I went into the hospital thinking it was the end of the line for me. I was eventually diagnosed with Wegener's granulomatosis and spent most of that year in hospitals and a nursing home before I improved enough to try anymore independent living situation. Many doctors told me that my survival was considered miraculous as my prognosis was considered very poor during my weeks in ICU. The bonus of getting several more years of life even after the downsizing caused by Wegener's granulomatosis was a major factor in increasing my capacity to enjoy and value life. The lessons learned are extremely valuable and much appreciated, although it is unfortunate that the price of nearly dying has to be so high for one to learn to value life.

    When my ex-wife ended our marriage after several decades I ended up in a light assisted living arrangement almost 10 years ago where I still reside.

    I remember the discussion in this thread as very significant and impressive. Of course many of the active posters are long gone but the topic seems very germane today as we try to figure out how to cope with our anxiety about being very vulnerable to the current pandemic. I guess we can thank Jack again for having the wisdom and foresight to start this thread and leave us with it as one of his last gifts to us.

    Most of us are probably considered as being very high risk for having an adverse reaction to SARS-CoV-2 and developing a serious case of Covid-19.

    My local physician told me I am the poster child for the most vulnerable patient he has and that I need to be extremely careful to try avoid catching the virus since my prognosis for surviving it is pretty bleak.

    I have several risk factors for having an adverse reaction. Like most of the people here I have a suppressed immune system and need to take immunosuppressant medicine to try to keep my GPA under control. I also have several decades of type I diabetes, lung damage and kidney damage from the GPA, a BMI over 25, age over 75, five instances in the past year where I have needed an antibiotic for two episodes of pneumonia which damage my lungs further, bronchitis, and a bad case of sepsis which almost killed me last fall. Thus, it is natural that this topic seems to be a more pressing concern as the cases of Covid-19 are increasing in many parts of the USA.

    My area of rural Minnesota has so far seems safer than many other parts of the country. But a town an hour drive away recently had a nine-month-old child die from the virus which was mysterious since the child had no known predisposing health problems and the deaths of any children in our state have been extremely rare and very few.

    I will start a new thread on coping with the stress of the current pandemic since I think this is a topic that would be of great concern to most of us. Maybe we can share our ideas of how to better manage the stress as well as offering some support to each other.
    Last edited by drz; 07-26-2020 at 03:41 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. #146
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    Default Re: Your Thoughts on Dying.

    Drz,

    As GPA patients we are severely at risk from COVID-19. I personally had heavy lung involvement. For those who are getting rituximab we have the added burden of T Cell depletion which will hinder the effectiveness of any vaccine that may be developed. My doctors have told me that I am quarantined for the foreseeable future. Hiking and riding my motorcycle are my only salvation for maintaining my sanity.

    Sent from my HD1907 using Tapatalk

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  8. #147
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    Default Re: Your Thoughts on Dying.

    Quote Originally Posted by drz View Post
    Last night I found myself thinking about this old thread and wondering if I could find it again...


    ...I guess we can thank Jack again for having the wisdom and foresight to start this thread and leave us with it as one of his last gifts to us.

    Most of us are probably considered as being very high risk for having an adverse reaction to SARS-CoV-2 and developing a serious case of Covid-19.


    I will start a new thread on coping with the stress of the current pandemic since I think this is a topic that would be of great concern to most of us. Maybe we can share our ideas of how to better manage the stress as well as offering some support to each other.
    Wow, drz. Very good that you found and re-posted this thread!
    This is a scaring episode in our life. Who would have thought that we 'd be facing a real pandemic for months and months?
    I remember Jack as an intelligent man, with both wisdom and wit, and I miss his presence on this forum.
    He always knew what to say...

    For me the threat of Covid 19 is very real, from time to time. So fear of, and thoughts on dying? Yes. Regularly. My husband and I try to do everything to stay safe, but at times this is very difficult.
    As for Covid 19, I 've had a zoonosis before. Query Fever. This was a bacterial infection, not a viral, like Covid 19.
    But these are both diseases that are transmitted from animals to humans, and the damage that occurs, can be radical and often prolonged.

    I hope we all can survive this difficult period in history, so we will be able to tell future generations how we managed to get by, and how they can prevent these disasters in the future!
    Living with WG/GPA since june 2010...

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  10. #148
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    Default Re: Your Thoughts on Dying.

    Hello friends,

    I am reading all your posts and appreciate the conversation. I am afraid of dying since I was a small child and that has deep down never changed I guess and my gut reaction to the question.

    I feel like I am still early-ish in my Wegner's diagnosis (2018) and still trying to come to terms what it means for my life expectancy. I was just actually talking to my husband the other night of how surreal the whole thing is to even grasp as I still am trying to go through my initial treatment plan. I keep saying I want to live to be 90 and I am not giving up now or yet! I want to be optimistic but realistic too!

    What I strongly hold onto today is FAITH and I hope it can prevail every time the fear tries to set in during any circumstance. The faith can be in whatever it means to you and for me it means faith from the life situations that I have already survived, without even realizing I was about to take that scary path with no symptoms to give me a heads up and medication that can make it better; it's faith for those who are struggling or suffering far greater than I have or ever will.

    I did not ask to have Wegener's but it is the card I/we have all been dealt and all that comes with it. I want my mind to stay strong and in control and never give up or give in. I hope I can always feel this way. It's easy to stay positive when the condition is under somewhat control.

    Now --- if I can just manage to take my medication successfully every day.... and try to find out how a prednisone tablet popped off me while walking and onto the floor!!?? Did I really miss taking it today? Do I double up or miss the day? What if I did take it and this random one was under my keyboard somehow!?? Decisions, decisions! I went with skipping today if somehow I really did not already take it, in which case then I did not skip! I will never know!!! haha!

    Have a great evening everyone!
    My best
    Kind Regards,
    Michelle

    “No act of kindness, no matter how small, is ever wasted.”
    Aesop

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  12. #149
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    Default Re: Your Thoughts on Dying.

    @watersedge

    Hello, thank you for this share because I will now always carry with me a knowing to be on constant alert of the sneaky side of this disease and to stay vigilant in my care and treatment! I really appreciate it!!

    Kind Regards,
    Michelle

    “No act of kindness, no matter how small, is ever wasted.”
    Aesop

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  14. #150
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    Default Re: Your Thoughts on Dying.

    DrZ,
    Thank you for reviving this topic. I looked through all the posts, and it is difficult to comprehend the characters and people whom seem so alive... and whom aren’t with us anymore. It makes the thought of death even more real.
    I honestly don’t know what I feel about my impending death-since we will all die. As everyone here, I worry about my family. I hope that I will have lived a good life and made people smile and laugh. I hope I will live on fondly in people’s memories.
    Natty


    Sent from my iPhone using Tapatalk

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