Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Well ya win some and ya lose some. Much to the Drs disapproval she wrote the script for the electric wheel chair, finally. She called the NIH and is faxing records to them now to see if they will accept us. She wrote the script for OT to do a home eval to see how we can make the house more functional for him. I did find out why he never gets admitted to the hospital. When they call her she tells them she doesn't believe his pain levels are as bad as he says. OK ready for a laugh? She said it doesn't make sense that loose joints should cause pain. It would seem he would be in less pain because nothing is pulling on the joints. I just told her that was a misconception on her part. I'm tired of trying to teach her. She said we needed a fresh start. Start over. Get a new primary. Well gee.... like I hadn't already come to that decision. So she fired us. She does not agree with all his meds and wants him to tough it out. Deal with the pain and move through it. She asked for me to go home and bring him back to see how he could walk. I did. She tried to force him to walk further than he was able to and said I was babying him when I got the wheel chair to take him back to the room. I told her she was wrong again. There was no meds available to help him cope with the 5 days of outrageous pain from what she was asking him to do. I tried to make her understand, that is isn't just the pain from walking, but the pain that lasts for days after, that is the bigger problem. 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. I know he is in pain, and he settled down. I let him now I will not give up and we will find an answer. He's doing better now. 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 8, 2004 Report Share Posted January 8, 2004 Well, Cindy, just to make myself feel better, I'd give her some damn phone numbers! I'm sure there are several people on the list that would speak with her regarding this. You might send out an appeal to those who would be willing to speak to her, or fax her their pain levels and what medications they're on. Maybe even someone would be willing to share their doctor's name so she could call that doctor?? I still wouldn't go back to her I don't think, but she DOES need to be educated!!!!! Until someone walks in another's shoes, how can they know for SURE that they don't have pain?!?!? So do you go to a pain clinic now?? If so, and they examine him and prescribe something, I would also send that to her! How very frustrating for you AND for Dylan!!! I'm so sorry it turned out this way! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Well, Cindy, just to make myself feel better, I'd give her some damn phone numbers! I'm sure there are several people on the list that would speak with her regarding this. You might send out an appeal to those who would be willing to speak to her, or fax her their pain levels and what medications they're on. Maybe even someone would be willing to share their doctor's name so she could call that doctor?? I still wouldn't go back to her I don't think, but she DOES need to be educated!!!!! Until someone walks in another's shoes, how can they know for SURE that they don't have pain?!?!? So do you go to a pain clinic now?? If so, and they examine him and prescribe something, I would also send that to her! How very frustrating for you AND for Dylan!!! I'm so sorry it turned out this way! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Well, Cindy, just to make myself feel better, I'd give her some damn phone numbers! I'm sure there are several people on the list that would speak with her regarding this. You might send out an appeal to those who would be willing to speak to her, or fax her their pain levels and what medications they're on. Maybe even someone would be willing to share their doctor's name so she could call that doctor?? I still wouldn't go back to her I don't think, but she DOES need to be educated!!!!! Until someone walks in another's shoes, how can they know for SURE that they don't have pain?!?!? So do you go to a pain clinic now?? If so, and they examine him and prescribe something, I would also send that to her! How very frustrating for you AND for Dylan!!! I'm so sorry it turned out this way! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 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 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 8, 2004 Report Share Posted January 8, 2004 Thanks and Lana. I'm not exactly sure what I'm going to next. He is already with a pain Dr, but she said she was going to call him and tell him she feels the meds are not right for Dylan. That really bothers me. She is just a family practice Dr. She needs to know what Dylan has is real, and it is not something he has made up to get out of school. I can't believe she actually ask me that one. She is actually a sweet Dr. She just does,t get what is going on with EDS. Maybe giving her others to talk to, would help, I don't know. She doesn't believe that others on these big meds for pain. I don't know what it will take to convince her. I like the office the staff and her too, but its hard when she doesn't believe me and Dylan. If I don't teach her, I'll just have to teach another DR. Give me some time to organize my mind. Re: Battle gear off I'd give her some damn phone numbers! I'm sure there are several people on the list that would speak with her regarding this. You might send out an appeal to those who would be willing to speak to her, or fax her their pain levels and what medications they're on. Maybe even someone would be willing to share their doctor's name so she could call that doctor?? I still wouldn't go back to her I don't think, but she DOES need to be educated!!!!! Until someone walks in another's shoes, how can they know for SURE that they don't have pain?!?!? ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Thanks and Lana. I'm not exactly sure what I'm going to next. He is already with a pain Dr, but she said she was going to call him and tell him she feels the meds are not right for Dylan. That really bothers me. She is just a family practice Dr. She needs to know what Dylan has is real, and it is not something he has made up to get out of school. I can't believe she actually ask me that one. She is actually a sweet Dr. She just does,t get what is going on with EDS. Maybe giving her others to talk to, would help, I don't know. She doesn't believe that others on these big meds for pain. I don't know what it will take to convince her. I like the office the staff and her too, but its hard when she doesn't believe me and Dylan. If I don't teach her, I'll just have to teach another DR. Give me some time to organize my mind. Re: Battle gear off I'd give her some damn phone numbers! I'm sure there are several people on the list that would speak with her regarding this. You might send out an appeal to those who would be willing to speak to her, or fax her their pain levels and what medications they're on. Maybe even someone would be willing to share their doctor's name so she could call that doctor?? I still wouldn't go back to her I don't think, but she DOES need to be educated!!!!! Until someone walks in another's shoes, how can they know for SURE that they don't have pain?!?!? ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Thanks and Lana. I'm not exactly sure what I'm going to next. He is already with a pain Dr, but she said she was going to call him and tell him she feels the meds are not right for Dylan. That really bothers me. She is just a family practice Dr. She needs to know what Dylan has is real, and it is not something he has made up to get out of school. I can't believe she actually ask me that one. She is actually a sweet Dr. She just does,t get what is going on with EDS. Maybe giving her others to talk to, would help, I don't know. She doesn't believe that others on these big meds for pain. I don't know what it will take to convince her. I like the office the staff and her too, but its hard when she doesn't believe me and Dylan. If I don't teach her, I'll just have to teach another DR. Give me some time to organize my mind. Re: Battle gear off I'd give her some damn phone numbers! I'm sure there are several people on the list that would speak with her regarding this. You might send out an appeal to those who would be willing to speak to her, or fax her their pain levels and what medications they're on. Maybe even someone would be willing to share their doctor's name so she could call that doctor?? I still wouldn't go back to her I don't think, but she DOES need to be educated!!!!! Until someone walks in another's shoes, how can they know for SURE that they don't have pain?!?!? ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Cindy -- Reading your email about what happened is like wading thru a nightmare. Did this " person " even graduate from medical school and take the " oath " -- or maybe she thought the oath was a bunch of lies, also???? Good riddance to her -- I hope you find a new primary who is actually a doctor!! Please know that my thoughts and prayers are with both you and Dylan. Love, Patti Battle gear off Well ya win some and ya lose some. Much to the Drs disapproval she wrote the script for the electric wheel chair, finally. She called the NIH and is faxing records to them now to see if they will accept us. She wrote the script for OT to do a home eval to see how we can make the house more functional for him. I did find out why he never gets admitted to the hospital. When they call her she tells them she doesn't believe his pain levels are as bad as he says. OK ready for a laugh? She said it doesn't make sense that loose joints should cause pain. It would seem he would be in less pain because nothing is pulling on the joints. I just told her that was a misconception on her part. I'm tired of trying to teach her. She said we needed a fresh start. Start over. Get a new primary. Well gee.... like I hadn't already come to that decision. So she fired us. She does not agree with all his meds and wants him to tough it out. Deal with the pain and move through it. She asked for me to go home and bring him back to see how he could walk. I did. She tried to force him to walk further than he was able to and said I was babying him when I got the wheel chair to take him back to the room. I told her she was wrong again. There was no meds available to help him cope with the 5 days of outrageous pain from what she was asking him to do. I tried to make her understand, that is isn't just the pain from walking, but the pain that lasts for days after, that is the bigger problem. 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. I know he is in pain, and he settled down. I let him now I will not give up and we will find an answer. He's doing better now. 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 8, 2004 Report Share Posted January 8, 2004 Cindy -- Reading your email about what happened is like wading thru a nightmare. Did this " person " even graduate from medical school and take the " oath " -- or maybe she thought the oath was a bunch of lies, also???? Good riddance to her -- I hope you find a new primary who is actually a doctor!! Please know that my thoughts and prayers are with both you and Dylan. Love, Patti Battle gear off Well ya win some and ya lose some. Much to the Drs disapproval she wrote the script for the electric wheel chair, finally. She called the NIH and is faxing records to them now to see if they will accept us. She wrote the script for OT to do a home eval to see how we can make the house more functional for him. I did find out why he never gets admitted to the hospital. When they call her she tells them she doesn't believe his pain levels are as bad as he says. OK ready for a laugh? She said it doesn't make sense that loose joints should cause pain. It would seem he would be in less pain because nothing is pulling on the joints. I just told her that was a misconception on her part. I'm tired of trying to teach her. She said we needed a fresh start. Start over. Get a new primary. Well gee.... like I hadn't already come to that decision. So she fired us. She does not agree with all his meds and wants him to tough it out. Deal with the pain and move through it. She asked for me to go home and bring him back to see how he could walk. I did. She tried to force him to walk further than he was able to and said I was babying him when I got the wheel chair to take him back to the room. I told her she was wrong again. There was no meds available to help him cope with the 5 days of outrageous pain from what she was asking him to do. I tried to make her understand, that is isn't just the pain from walking, but the pain that lasts for days after, that is the bigger problem. 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. I know he is in pain, and he settled down. I let him now I will not give up and we will find an answer. He's doing better now. 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.