Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Helen Thanks you so much for your thoughts & prayers. Betty Re: To Those who have VEDS > Hi, this is Helen C, from Adelaide, South Oz. My heart goes out to you and > your children, Beth and Betty. Especially you Betty with your 17yr old son. > (Hope I have the right people!) I have Type III and have often wondered what > it would be like to know you have VEDS and what to do about your children. My > prayers, good thoughts and best wishes go out to you. I would not like to be > in your position. I have had enough problems just with Type III and it is not > life threatening as VEDS is and I don't compare my type at all with VEDS. > I live in Adelaide, South Australia and there are no doctors at all who > know anything or want to find out anything about EDS. We were only officially > diagnosed about 3 yrs ago, by that time my now 21 yr old had done ballet and > about 3-4 years of rythmicgymnastics and of course was very good!!! At 20 she > was having bad back pain and fatigue and is not happy at all to know she has > EDS. My now 17 yr old was doing vaulting on horseback and I would cringe every > time she did anything and especially when she jumped off. Fortunately (not > meaning to sound happy about it but) she ended up with very bad ankles and had > prolotherapy which is very painful for us EDSers, she is ok at the moment and > she decided herself not to continue. She continues to look after a horse for > someone and rides but she knows she has to be careful. One doctor I asked, " What > should or shouldn't they do? " and he said, " Let them do what they like! " As a > person who did not know about EDS until recently I believe the jobs I > undertook when younger very much possibly made me much worse today than perhaps I > would be and I don't want my children to be going through what I am at my age of > 50. I was a nurse back in the seventies, lifting 6' stroke patients by myself > and I am only 4' 9 1/2 " and before that I was a caterer lifting huge pots and > pans etc. I did the Cordon Bleu Cooking Course in London and we had to whisk > meringues and do many other things by hand. Ever tried whisking meringue by > hand!? By the time I was about 45 I couldn't even wipe my sink down because of > the pain. Fortunately prolotherapy has help me tremendously. So I guess it > is relatively easy for us Type III's to tell out children but I realise it > must be so difficult for you two. My heart goes out to you both and anyone else > in the same situation and all I can say is that I am thinking of and praying > for you both and to let your heart tell you what to do. Hang in there. I hope > you have a lot of support around you. > > Gentle Hugs > Helen C > South Oz > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Helen C, Thanks for your thoughts and encouragement. I know I am fairly quiet on the list. I don't often say much, but I guess I feel out of place at times as I don't actually have EDS, although my life is definitely affected and has been altered and changed forever by it. I am fortunate in that I do have a lot of support from my family and have had always. Take care. Beth Re: To Those who have VEDS > Hi, this is Helen C, from Adelaide, South Oz. My heart goes out to you and > your children, Beth and Betty. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Helen C, Thanks for your thoughts and encouragement. I know I am fairly quiet on the list. I don't often say much, but I guess I feel out of place at times as I don't actually have EDS, although my life is definitely affected and has been altered and changed forever by it. I am fortunate in that I do have a lot of support from my family and have had always. Take care. Beth Re: To Those who have VEDS > Hi, this is Helen C, from Adelaide, South Oz. My heart goes out to you and > your children, Beth and Betty. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Helen C, Thanks for your thoughts and encouragement. I know I am fairly quiet on the list. I don't often say much, but I guess I feel out of place at times as I don't actually have EDS, although my life is definitely affected and has been altered and changed forever by it. I am fortunate in that I do have a lot of support from my family and have had always. Take care. Beth Re: To Those who have VEDS > Hi, this is Helen C, from Adelaide, South Oz. My heart goes out to you and > your children, Beth and Betty. Quote Link to comment Share on other sites More sharing options...
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