Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Jo: Your note was most helpful to me. It is a comfort to know that you hold life so precious. You are so right in that it is really about the pain of seeing your child suffer and particularly seeing so many in the world who treat them unkindly, rudely, dismissively, but particularly drs. who consistently prefer to dismiss the severe complications and issues that develop, plus choosing to ignore the social and care issues that arise. The guilt at being so helpless in the face of these obstacles and having your child's physical complaints ignored is a large burden. Bernie I know what you mean about your kids by the way, it's not about you not wanting them it's about you wishing they didn't have to suffer....my parents went through the same and my Mum had a huge guilt trip after I was diagnosed. It was hard convincing her I don't blame her for having me and that in spite of what my body is doing and how I feel sometimes, life is still a very precious gift. Oops, sorry for waffling on Grace, hope I haven't bored you rigid! Take care and please know that I am thinking of you and always here for you if you need a hug. Love and hugs....Jo xxx To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Jo: Your note was most helpful to me. It is a comfort to know that you hold life so precious. You are so right in that it is really about the pain of seeing your child suffer and particularly seeing so many in the world who treat them unkindly, rudely, dismissively, but particularly drs. who consistently prefer to dismiss the severe complications and issues that develop, plus choosing to ignore the social and care issues that arise. The guilt at being so helpless in the face of these obstacles and having your child's physical complaints ignored is a large burden. Bernie I know what you mean about your kids by the way, it's not about you not wanting them it's about you wishing they didn't have to suffer....my parents went through the same and my Mum had a huge guilt trip after I was diagnosed. It was hard convincing her I don't blame her for having me and that in spite of what my body is doing and how I feel sometimes, life is still a very precious gift. Oops, sorry for waffling on Grace, hope I haven't bored you rigid! Take care and please know that I am thinking of you and always here for you if you need a hug. Love and hugs....Jo xxx To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Jo: Your note was most helpful to me. It is a comfort to know that you hold life so precious. You are so right in that it is really about the pain of seeing your child suffer and particularly seeing so many in the world who treat them unkindly, rudely, dismissively, but particularly drs. who consistently prefer to dismiss the severe complications and issues that develop, plus choosing to ignore the social and care issues that arise. The guilt at being so helpless in the face of these obstacles and having your child's physical complaints ignored is a large burden. Bernie I know what you mean about your kids by the way, it's not about you not wanting them it's about you wishing they didn't have to suffer....my parents went through the same and my Mum had a huge guilt trip after I was diagnosed. It was hard convincing her I don't blame her for having me and that in spite of what my body is doing and how I feel sometimes, life is still a very precious gift. Oops, sorry for waffling on Grace, hope I haven't bored you rigid! Take care and please know that I am thinking of you and always here for you if you need a hug. Love and hugs....Jo xxx To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Jo, I'm so sorry too, Cindy C. just said it all so eloquently, I agree. Take Care my friend. Sorry I forgot to mention your name in my note to CEDA Fri. night. You are such an inspiration to me! You have gone through so much and still have suffer with soooooo much, but yet you still manage everything that has come along with this devastating disease of EDS ,with such grace and courage!!! Bless you Jo! Take Care! Love, S. Jo > > Hi dear. Ya know, with this rollercoaster we ride, an elec. chair doesn't mean forever. Sometimes we walk, sometimes we cane, and sometimes we ride. A year or month of this and that. For what ever reason, you seem to be on a wild ride for the moment. Things are going wrong right and left. It doesn't mean you won't have times that are better. Times you can walk to the berries and pick them. Walk to the mailbox, watch TV without going to the ER. EDS is such a strange thing, with times of good and times of bad. There is no answer why we just fall to pieces at times and other times we don't. I know the hard times are soooo hard to get through. like there will never be a good day again. I also know you have added problems with your body that make things more complicated, so I don't want to sound like it's all that simple. I know it's not. What your going through right now is just to much for any one person, but it is the body you are living in. I'm not here to say any words of wisdom or say something like, " things will be better " because I don't know that. I just want to say, I'm here, to listen, to try to understand how things are for you now, and to tell you my thoughts and prayers are with you. I pray things improve for you and you can walk off this ride sometime soon. I will send you healing energy with every thought I have of you. > Cindylouwho > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Jo, I'm so sorry too, Cindy C. just said it all so eloquently, I agree. Take Care my friend. Sorry I forgot to mention your name in my note to CEDA Fri. night. You are such an inspiration to me! You have gone through so much and still have suffer with soooooo much, but yet you still manage everything that has come along with this devastating disease of EDS ,with such grace and courage!!! Bless you Jo! Take Care! Love, S. Jo > > Hi dear. Ya know, with this rollercoaster we ride, an elec. chair doesn't mean forever. Sometimes we walk, sometimes we cane, and sometimes we ride. A year or month of this and that. For what ever reason, you seem to be on a wild ride for the moment. Things are going wrong right and left. It doesn't mean you won't have times that are better. Times you can walk to the berries and pick them. Walk to the mailbox, watch TV without going to the ER. EDS is such a strange thing, with times of good and times of bad. There is no answer why we just fall to pieces at times and other times we don't. I know the hard times are soooo hard to get through. like there will never be a good day again. I also know you have added problems with your body that make things more complicated, so I don't want to sound like it's all that simple. I know it's not. What your going through right now is just to much for any one person, but it is the body you are living in. I'm not here to say any words of wisdom or say something like, " things will be better " because I don't know that. I just want to say, I'm here, to listen, to try to understand how things are for you now, and to tell you my thoughts and prayers are with you. I pray things improve for you and you can walk off this ride sometime soon. I will send you healing energy with every thought I have of you. > Cindylouwho > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 I've got osteoporosis, had the DEXA scan, and bone chemistry is probably simply the calcium/phosphorus/Vitamin D blood levels -- I have those every 3 months... Quote Link to comment Share on other sites More sharing options...
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