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Thread: Decreasing support and how to find more support.

  1. #31
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    Oh.....lol I thought it was anatomical....he he
    Phil Berggren, dx 2003

  2. #32
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    It was interesting to read again this thread I started almost two years ago. I have some follow up thoughts after reading this again and my experiences over the past two years.

    It is nice to have a life partner or close friends who are understanding and supportive and those who do are very lucky. I think it important to recognize that major changes in health or other life circumstances are stressful and that people also change in response to such major changes in their life circumstances. Some relationships get stronger when then people involved recognize what is most important in their life and their relationships.

    Some people cannot accept or adapt to these big changes so many relationships don't survive the stress of these changes and they fall apart and end. My marriage of several decades didn't survive. But I think it is better to live alone than try enduring being stressed out all the time by a negative, critical, non supportive relationship. If your life partner can't be supportive and bails out on you, it can turn out to be a blessing even though it may just feel like another major loss at the time. It might be harder to be the one to leave, but some times such tough choices might be the best option to try maintain ones health. In such cases a professional counselor should be probably be consulted to help make such a decision to be sure it the best one for you.

    I believe support groups of various kinds are also a great source of emotional support if you can find a good one close by to attend. In our area we have groups to help people cope with various chronic illnesses, diseases like cancer, epilepsy, strokes, cardiac disease, MS, etc, classes to help adjusting to living alone again after a relationship ends through death or divorce or separation, and there are many other specialized groups available on the internet. I think this forum qualifies as a good one. One does need to be careful though in joining online groups as not everyone in them is healthy or helpful.

    Professional counseling or personal therapy is usually also a pretty good and safe choice if it is an option. But again there are good doctors and some doctors who are not as competent or skillful or helpful. Here we have to trust our instincts to help evaluate if we are getting good care and help.

    Thanks to everyone for their input and contributions to this thread.
    Last edited by drz; 05-17-2014 at 12:52 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #33
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    Such great wisdom, thanks for sharing this very serious truth.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  4. #34
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    Thanks a lot, drz. your wisdom is very helpful
    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.

  5. #35
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    Yes, thank you, drz. I'm curious, two years later how are you feeling about your support network and social life? (I always refer to mine as my social life or lack thereof)...

  6. #36
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    Quote Originally Posted by windchime View Post
    A chakra is an energy center. We have 7 major ones. Root, Sacral, Solar Plexus, Heart, Throat, Third Eye, and Crown.

    Here is a link if you'd like more information. I don't want to hijack the thread and I don't know if this crosses the religion line although it's not a religion. Just trying to stay out of trouble.

    The 7 Chakras for Beginners
    Apparently to heal the throat chakra, one should practice shoulder stands... Ha! My body won't be doing that any time soon. Once in a while, in complete denial, I do something I used to be able to do (like demonstrate a cartwheel or handstand for my kids).., and then I PAY.

    thank you for the summary of the chakras. I've been meaning to read more about the throat chakra for some time. Now I will. There's a place on one of the islands off the BC coast that has chakra healing retreats that sound amazing... You can do a combination of different chakras or focus on one. I'm hoping to get there someday and do one or more of the workshops.

  7. #37
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    By way of follow-up to my post of a couple of days ago... Hubby is now back to his normal cheerful self, bringing me lemon water while I sit in my happy place (the tub) and telling me to relax and take my time as he has the kids and everything under control. I love Saturday mornings! I can generally take care of myself and get moving slowly rather than take care of everyone else for two or three hours, get the kids to school, then assess the damage, see what if any energy I have remaining, and what can be done... I'm sure he is still in denial and assuming I don't have WG or if I do it's no biggie and everything will be fine, but at least he's more pleasant. The understanding and acceptance will come later. I know the pattern all too well. Thanks for all of the support and advice you've all given me!

  8. #38
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    Quote Originally Posted by LisaT View Post
    Yes, thank you, drz. I'm curious, two years later how are you feeling about your support network and social life? (I always refer to mine as my social life or lack thereof)...
    Generally OK. I am busy with lots of activity when my many medical appointments permit. There are many things I wish I could still do but no longer have the necessary energy and endurance and physical ability to do. I have found some substitute activities like more passive and audience or observation type things like playing cards, reading and book clubs, discussion groups, spectator sports and watching performing arts or doing low energy activities like geocaching. I tried disc golf yesterday but could only go four holes.

    I have recovered as much as likely from my Weg damage and decades of diabetes that caused kidney damage, lung damage, neuropathy, loss of hearing and balance, and of course the pervasive lack of energy and resultant need for lots of naps and rest. But I am very happy I am no longer in a nursing home or hospital and am mostly independent in a light assisted living senior living complex.

    I rely on the staff here or using other paid help when necessary for help and support in case of serious health emergency. I have a sibling that helped a great deal when i had a couple operations. I count on my daughter to direct my health care and advise me on any important decisions as she did a tremendous job directing my health care four years ago when I was really ill and spent half that year in hospitals and nursing homes.

    I would like more close friends and emotional support, but as long as I remain in a drug induced remission I can get by fine now. I would also like to have a life partner who is also a close and trusted friend but being recently divorced after a long and stressful divorce, I am wary and reluctant to even consider making another commitment to another life partner at this stage in my life even if i found a great candidate which also seems unlikely to me.

    The divorce took two years to complete after my wife of over four decades demanded i move out and then she dragged it out and made it as difficult and expensive as possible. I am very happy it is finally over but it will be very difficult for me to develop enough trust in some one again to risk going through such a procedure again even if it became possible. I also doubt there are many people are willing to get seriously involved with some one like myself who has many health care issues. Being a caretaker in a relationship is difficult and demanding and I don't wish to do that again either if I can avoid it.

    So in summary I feel things are adequate to good but like most things they could also be better.
    Last edited by drz; 05-19-2014 at 11:52 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  9. #39
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    I, purposely, don't have a lot of friends and I'm not in any "clubs". My closest friend is my wife. We do almost everything together and have a lot of fun doing it. However, she is more social than I am and she does go to book clubs and that sort of stuff.

    I don't have a lot of friends or belong to clubs because they can be a drain on your life and they create future commitments that I might not be able to keep or might not want to keep. I have 2 very close friends locally and 3 or 4 close friends at a distance (1,000 miles or more). These are the type of friends I can confide in and the ones that understand when I say I'm not up to doing such-and-such. We talk on the phone often.

    My social network is this forum and several lists of e-mail friends. But my best friend is my wife.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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  10. #40
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    I am glad to hear that vdub. I think spouses should be each others best friend.

    I belong to some groups and clubs too but have never felt pressured to go regularly. I just show up when I want to.
    Phil Berggren, dx 2003

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