Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 For those of you who don't know what type of EDS you have or all of you for that matter. How do you all cope with not knowing, or knowing? Grace Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2004 Report Share Posted July 20, 2004 Grace I can't speak for everybody else but for me I have had many days where I wished I had never heard of VEDS. Since my son passed away and then I was diagnosed and of course we found out that he had it too, I have had days that were like a living hell. I have also had good days like when I found out that my older boy doesn't have this. I have had to take anti-depressants to help me deal with the diagnosis, grief etc. I have also become to rely on my cyber family for help, support, advice and for whatever I need. It has been a lifeline. I realize also now that you must have a lot of faith in whatever you believe in. That has become to be important now. I try & live life like my son who lived every day to its fullest .......that is his greatest legacy to us & to all those who knew him. SOme of us were dealt a rough hand and we have all lived with illnesses, great pain and a host of other things but we are survivors so that is how I am learning (and yes I am still learning) to cope. Hope this helps, sorry it is so long-winded. Betty How do you cope? > For those of you who don't know what type of EDS you have or all of > you for that matter. How do you all cope with not knowing, or > knowing? > > Grace > > > > > > 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 20, 2004 Report Share Posted July 20, 2004 Grace I can't speak for everybody else but for me I have had many days where I wished I had never heard of VEDS. Since my son passed away and then I was diagnosed and of course we found out that he had it too, I have had days that were like a living hell. I have also had good days like when I found out that my older boy doesn't have this. I have had to take anti-depressants to help me deal with the diagnosis, grief etc. I have also become to rely on my cyber family for help, support, advice and for whatever I need. It has been a lifeline. I realize also now that you must have a lot of faith in whatever you believe in. That has become to be important now. I try & live life like my son who lived every day to its fullest .......that is his greatest legacy to us & to all those who knew him. SOme of us were dealt a rough hand and we have all lived with illnesses, great pain and a host of other things but we are survivors so that is how I am learning (and yes I am still learning) to cope. Hope this helps, sorry it is so long-winded. Betty How do you cope? > For those of you who don't know what type of EDS you have or all of > you for that matter. How do you all cope with not knowing, or > knowing? > > Grace > > > > > > 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 20, 2004 Report Share Posted July 20, 2004 Hi Grace: My 17 yr old dtr has HEDS and the geneticist doesn't think she has serious enough bruising symptoms to warrant testing for VEDS, however I am certain she has some vascular problems because of her severe low blood pressure and dizzy episodes. For me it is much better to know and understand the effects of too loose ligaments and too elastic blood vessels. It was torture for me to know that something serious was wrong with my daughter and not have the doctors give it a name or provide understanding so that I could help her cope. We were constantly getting sideswiped by severe issues coming up and the scrambling to deal with them was horrible. It is still very tough to live with, but knowing the mechanism has helped tremendously in knowing what accommodations and defensive measures can be taken to deal with difficult episodes. I am no longer racking my brain in isolation to figure out how to guide my daughter and I am no longer putting unrealistic expectations on her physical endurance. Most important is that she no longer feels so alone in her struggles as she also has come to understand the underlying causes and the principles to implement ways to cope. It was extremely difficult for her previous to us having some understanding. I still feel very bitter that I had to do every bit of the research myself to uncover the cause and strongly feel this should not be so as the child is denied proper support and is unable to receive adequate schooling accommodations. My daughter was swarmed at school, largely because she was physically ill and the tough student recognised her physical weakness and discomfort. This does not occur with other medical conditions like rheumatoid arthritis or even cancer. My daughter still has difficulty accepting many of the limitations and rebels against this syndrome but that seems natural to me. Also she will escape from it in her computer games but that also is one of her ways of coping at the present time. It takes a great deal of courage to come to terms with living with this........and time........and more time. Regards, Bernie P.S. Talking with this group helps hugely to decrease the isolation Re: How do you cope? Grace I can't speak for everybody else but for me I have had many days where I wished I had never heard of VEDS. Since my son passed away and then I was diagnosed and of course we found out that he had it too, I have had days that were like a living hell. I have also had good days like when I found out that my older boy doesn't have this. I have had to take anti-depressants to help me deal with the diagnosis, grief etc. I have also become to rely on my cyber family for help, support, advice and for whatever I need. It has been a lifeline. I realize also now that you must have a lot of faith in whatever you believe in. That has become to be important now. I try & live life like my son who lived every day to its fullest .......that is his greatest legacy to us & to all those who knew him. SOme of us were dealt a rough hand and we have all lived with illnesses, great pain and a host of other things but we are survivors so that is how I am learning (and yes I am still learning) to cope. Hope this helps, sorry it is so long-winded. Betty How do you cope? > For those of you who don't know what type of EDS you have or all of > you for that matter. How do you all cope with not knowing, or > knowing? > > Grace > > > > > > 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 Betty you can be as long winded as you want! Thank you so much for replying!!! HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm How do you cope? > For those of you who don't know what type of EDS you have or all of > you for that matter. How do you all cope with not knowing, or > knowing? > > Grace > > > > > > 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 Thank you Bernadette. I fully understand about that lack of looking into this condition. After our youngest was found with an enlarged aorta a little over a year ago we went to see the genetics Doc. I had started doing alot of research on my own cause we had a 6 month waiting time for the appointment. I found Marfans Syndrome fit him the best. But my mom had been told when my dad passed away from an aneurism years ago that he probably had Ehlors-Danlos. So that was also in the back of my head. The first visit with genetics was a big production. She told me he didn't have Marfans but would look into the EDS next time. And to make sure we had all the children with us next visit. Long story short, she did the visual testing on the boys and Micah and could do 99% of the body bending. She said she is positive Micah has EDS and off to get tested for type 4. It came back negative. I approached her saying maybe it wasn't EDS and maybe it was something else. She said no, it was definitely EDS. Just a few weeks ago I had to call Gen. Councilor cause I was having problems with getting a doc to believe me when I said I had it. I asked why the EDS wasn't in Micah's records. She said it was. But I looked them over the last time we where at the Hospital and EDS was NOT in his records. So we are having some issues right now. No-one wants to do any testing on my oldest or myself cause there is no heart failure symptoms. UGH. Sorry this got so long....lol Thank you for replying! HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm How do you cope? > For those of you who don't know what type of EDS you have or all of > you for that matter. How do you all cope with not knowing, or > knowing? > > Grace > > > > > > 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 Thank you Bernadette. I fully understand about that lack of looking into this condition. After our youngest was found with an enlarged aorta a little over a year ago we went to see the genetics Doc. I had started doing alot of research on my own cause we had a 6 month waiting time for the appointment. I found Marfans Syndrome fit him the best. But my mom had been told when my dad passed away from an aneurism years ago that he probably had Ehlors-Danlos. So that was also in the back of my head. The first visit with genetics was a big production. She told me he didn't have Marfans but would look into the EDS next time. And to make sure we had all the children with us next visit. Long story short, she did the visual testing on the boys and Micah and could do 99% of the body bending. She said she is positive Micah has EDS and off to get tested for type 4. It came back negative. I approached her saying maybe it wasn't EDS and maybe it was something else. She said no, it was definitely EDS. Just a few weeks ago I had to call Gen. Councilor cause I was having problems with getting a doc to believe me when I said I had it. I asked why the EDS wasn't in Micah's records. She said it was. But I looked them over the last time we where at the Hospital and EDS was NOT in his records. So we are having some issues right now. No-one wants to do any testing on my oldest or myself cause there is no heart failure symptoms. UGH. Sorry this got so long....lol Thank you for replying! HUGGLES, Grace EDS, It's a Life Thing http://www.ehlersdanlos.ca/whateds.htm How do you cope? > For those of you who don't know what type of EDS you have or all of > you for that matter. How do you all cope with not knowing, or > knowing? > > Grace > > > > > > 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 I try & live > life like my son who lived every day to its fullest .......that is his > greatest legacy to us & to all those who knew him. ------------ Wonderful testament Betty!! Quote Link to comment Share on other sites More sharing options...
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