Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Cindy -- I think you did fantastic - the unconditonal love and respect you have for your son is a beautiful thing. Just as Mike said, Congratulations!! Love, Patti Re: Battle gear off Congratulatons! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Cindy -- I think you did fantastic - the unconditonal love and respect you have for your son is a beautiful thing. Just as Mike said, Congratulations!! Love, Patti Re: Battle gear off Congratulatons! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Cindy -- I think you did fantastic - the unconditonal love and respect you have for your son is a beautiful thing. Just as Mike said, Congratulations!! Love, Patti Re: Battle gear off Congratulatons! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Cindy, The real shame is that in her ignorance, she will undoubtedly enter a good deal of misinformation into Dylan's medical file. As I see it, you can only keep looking for a more knowledgeable and compassionate practitioner. My thoughts and prayers are with you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Battle gear off Cindy, The real shame is that in her ignorance, she will undoubtedly enter a good deal of misinformation into Dylan's medical file. As I see it, you can only keep looking for a more knowledgeable and compassionate practitioner. My thoughts and prayers are with you. ~~~~~~ You bring up a good point, ! Cindy, you have the right to get copies of all of Dylan's medical records. Fill out the forms to get copies and tell them it's for continuity of care so you won't have to pay for them. make sure you pick them up personally and carry them with you to the new MD. Also check for inaccuracies and request/insist that the mistakes be changed and that you get NEW copies of the amended records! Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Battle gear off Cindy, The real shame is that in her ignorance, she will undoubtedly enter a good deal of misinformation into Dylan's medical file. As I see it, you can only keep looking for a more knowledgeable and compassionate practitioner. My thoughts and prayers are with you. ~~~~~~ You bring up a good point, ! Cindy, you have the right to get copies of all of Dylan's medical records. Fill out the forms to get copies and tell them it's for continuity of care so you won't have to pay for them. make sure you pick them up personally and carry them with you to the new MD. Also check for inaccuracies and request/insist that the mistakes be changed and that you get NEW copies of the amended records! Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Battle gear off Cindy, The real shame is that in her ignorance, she will undoubtedly enter a good deal of misinformation into Dylan's medical file. As I see it, you can only keep looking for a more knowledgeable and compassionate practitioner. My thoughts and prayers are with you. ~~~~~~ You bring up a good point, ! Cindy, you have the right to get copies of all of Dylan's medical records. Fill out the forms to get copies and tell them it's for continuity of care so you won't have to pay for them. make sure you pick them up personally and carry them with you to the new MD. Also check for inaccuracies and request/insist that the mistakes be changed and that you get NEW copies of the amended records! Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Cindy, I suggest that you make a copy of all of the numbers that are given to you write them down 9and hey maybe even with some personal informaiton as to what type of EDS they ahve and what med's they are on (I would be willing to give you ALL of this information) and then take it into that so called docotr and had it to her in person and say here, here is the informaiton that you requested and Good Bye. Good Luck on your quest to find a new GP/ primary care doc for your son and your family. Sharon > > > Cindy, > > That doctor really does not know what she is talking about. If you > would like you may give her my phone number. > > Hugs > Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Thank God there are families like yours and mine who do believe and stand up for us and with us! Children and adults both can cope so much better when they know that someone believes! Should you need to give this " DR " a phone number regarding wheelchairs/mobility issues, please give her mine. I would be happy to speak with her both as an EDSr and as an RN. I am sending you my number privately. Grrrrrr! gentle hugs, Sue J. > > She had him crying in anger. I had enough. I let him know, I believe him, I will fight for him, She is just a person, and her opinion, is just that. Her opinion. On a last note. She asked If I know any body in a wheel chair due to EDS. I told her, yes many. She wants phone #s. She said she wants to talk to people because she does not believe EDS can hurt this much. Time to move on. Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Thank God there are families like yours and mine who do believe and stand up for us and with us! Children and adults both can cope so much better when they know that someone believes! Should you need to give this " DR " a phone number regarding wheelchairs/mobility issues, please give her mine. I would be happy to speak with her both as an EDSr and as an RN. I am sending you my number privately. Grrrrrr! gentle hugs, Sue J. > > She had him crying in anger. I had enough. I let him know, I believe him, I will fight for him, She is just a person, and her opinion, is just that. Her opinion. On a last note. She asked If I know any body in a wheel chair due to EDS. I told her, yes many. She wants phone #s. She said she wants to talk to people because she does not believe EDS can hurt this much. Time to move on. Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Thank God there are families like yours and mine who do believe and stand up for us and with us! Children and adults both can cope so much better when they know that someone believes! Should you need to give this " DR " a phone number regarding wheelchairs/mobility issues, please give her mine. I would be happy to speak with her both as an EDSr and as an RN. I am sending you my number privately. Grrrrrr! gentle hugs, Sue J. > > She had him crying in anger. I had enough. I let him know, I believe him, I will fight for him, She is just a person, and her opinion, is just that. Her opinion. On a last note. She asked If I know any body in a wheel chair due to EDS. I told her, yes many. She wants phone #s. She said she wants to talk to people because she does not believe EDS can hurt this much. Time to move on. Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Thank You , for the offer of your phone number to give my Dr. But I am going to spend my energy finding a new Dr instead of continuing to teach one that doesn't want us. If I run into a problem like this again, I sure know where to turn, You've all been wonderful in offers to help. I love the way we stick together. Thanks again, but I'm letting it go and moving on. Cindy C. Re: Battle gear off >On a last note. She asked If I know any body in a wheel chair due to >EDS. I told her, yes many. She wants phone #s. She said she wants to >talk to people because she does not believe EDS can hurt this much. Do you want my phone number, Cindy? Not only am I in a wheelchair, I am in a powered wheelchair after ruining my wrists using a manual (not helped by high keyboard use, as I was a Software Engineer). But I had to fund it all myself, because the council doing the funding would only fund a powered wheelchair if you cannot walk at all. My hobbling is considered walking, so no funding. The OT I spoke to agreed that this was a silly criteria to base need on, but her hands were tied. (We had a mutual whinge about bureaucrats and red tape.) I helped out my supplier with computer problems and also send lots of business their way, so I got a discount. Paying for something doesn't always require money. My supplier made it affordable for me and I helped them out, so everyone benefited. Unfortunately it no longer meets my needs, but I cannot afford to do anything about it. I am not able to do 'in kind' work anymore, so I'm not sure what I am going to do. -- Fuller Furry purries Grace, Poppy, Flo and Fliss Folding for the future with the Arthritis Warriors team. 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 Thank You , for the offer of your phone number to give my Dr. But I am going to spend my energy finding a new Dr instead of continuing to teach one that doesn't want us. If I run into a problem like this again, I sure know where to turn, You've all been wonderful in offers to help. I love the way we stick together. Thanks again, but I'm letting it go and moving on. Cindy C. Re: Battle gear off >On a last note. She asked If I know any body in a wheel chair due to >EDS. I told her, yes many. She wants phone #s. She said she wants to >talk to people because she does not believe EDS can hurt this much. Do you want my phone number, Cindy? Not only am I in a wheelchair, I am in a powered wheelchair after ruining my wrists using a manual (not helped by high keyboard use, as I was a Software Engineer). But I had to fund it all myself, because the council doing the funding would only fund a powered wheelchair if you cannot walk at all. My hobbling is considered walking, so no funding. The OT I spoke to agreed that this was a silly criteria to base need on, but her hands were tied. (We had a mutual whinge about bureaucrats and red tape.) I helped out my supplier with computer problems and also send lots of business their way, so I got a discount. Paying for something doesn't always require money. My supplier made it affordable for me and I helped them out, so everyone benefited. Unfortunately it no longer meets my needs, but I cannot afford to do anything about it. I am not able to do 'in kind' work anymore, so I'm not sure what I am going to do. -- Fuller Furry purries Grace, Poppy, Flo and Fliss Folding for the future with the Arthritis Warriors team. To learn more about EDS, visit our website: http://www.ceda.ca Quote Link to comment Share on other sites More sharing options...
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