Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Apparently there is no way out- Its a trap! I unsubbed and am still getting email ...... What gives? I am sorry Sue and the rest of you- maybe family does stick together during good and bad but we all have families , in real life- yes- and my doctor- stated to try to avoid stress as much as possible so why be in yet another situation that people obviously can't get a long? Whoever owns this group - please unsub me as I have definitely unsubbed but am obviously still here- Thanks In Advance ;-) May God Bless- will keep group in my prayers - from the outside......... Love- TJ CEDA Family Hi Everybody, I would like to take this oppourtunity to remind everyone of one simple thought that I have always shared about this list and all of my EDS friends whether they are on this list or not. We are a family......and just like a family we have good times, arguments, shared views and differences of opinions. Some of us have good days, and some of us have bad days. But a family always sticks together no matter what. Everyone, please consider this. Hugs, Sue To learn more about EDS, visit our website: http://www.ceda.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Hi TJ, You have not unsubscribed properly. I can do this for you. I am sorry you feel the need to leave, this is a wrinkle that I hope has been ironed out and will not be revisited again. Jill CEDA Family > > > Hi Everybody, > > I would like to take this oppourtunity to remind everyone of one simple > thought that I have always shared about this list and all of my EDS friends whether > they are on this list or not. We are a family......and just like a family we > have good times, arguments, shared views and differences of opinions. Some > of us have good days, and some of us have bad days. But a family always sticks > together no matter what. Everyone, please consider this. > > Hugs, > Sue > > > To learn more about EDS, visit our website: http://www.ceda.ca > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 >SOme advice please.......I have VEDS and was wondering anyone out there who >has this -How do you go on with your daily life? I am constantly thinking I >am going to go just like that (as my son did) I am suffering from anxiety >and sometimes afraid to do anything including closing my eyes. I started to >feel like this again after I heard that had passed away (she also had >VEDS and her 14 yearold son also died). ANy advice would be welcome. I have >had an echo and an MRI (cardiac) done within the last few months, but as >many are aware sometimes things can just happen. Well, I have HEDS rather than VEDS, but I have more insight than most, having almost died three times in the last few years. Try to live your life as if today was your last day. Have your desert _before_ your meal (and enjoy flummoxing the waiter/waitress). Don't say " I'll do that someday " . That day may not come. My dad (EDS carrier, but no symptoms) had loads of plans for when he retired. At age 46 he was diagnosed with cancer, at 47 he was medically retired and at 48 he died. (The years in between diagnosis and his death were not easy for us. A living h*ll, most of the time, truth be told.) He never had the chance to do any those things and his death meant that my Mum lost out to. It isn't the same to do them alone or with someone else. If you want to do something, what can you do to make it happen? Make sure that all your loved ones know of your love. Celebrate the life you have now and know that your son will come for you when your time has come. And think what you can do to help those you will leave behind when you go. You never know. You may not pass until you are 102! You will have down days. We all do. EDS can be very cruel in this respect. EDS doesn't come alone, it brings it's friends, of which depression is one. And it is normal to mourn the loss of your son. You expect your children to outlive you, and having to live after one has died must be horrible. (My dad was determined to outlive his Mum and did so. He passed less than a month after she did.) But try to look back and enjoy the good times. This can be very hard, but there will come a time where you can look back and enjoy the happy memories, the bad jokes, their smile, etc. As a family, we can do that now, but I will never know him adult to adult. Yes, I have days when his loss still feels fresh, even after all these years, but most days, I can look back and enjoy all the funny and silly things we shared. Those memories are a gift to those left behind. -- Fuller Furry purries Grace, Poppy, Flo and Fliss Folding for the future with the Arthritis Warriors team. Quote Link to comment Share on other sites More sharing options...
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