Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 In a message dated 1/30/2004 10:14:24 PM Central Standard Time, monica-jb@... writes: Sounds like OCD to me. Yes, he's been told he's somewhat obsesive, and my daughter thought he was - she's an RN. Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 In a message dated 1/30/2004 10:14:24 PM Central Standard Time, monica-jb@... writes: Sounds like OCD to me. Yes, he's been told he's somewhat obsesive, and my daughter thought he was - she's an RN. Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 In a message dated 1/30/2004 10:12:43 PM Central Standard Time, monica-jb@... writes: Can you imagine? , I can just a little bit! I can't imagine what it's like to be scared every night! The few times I have been scared, it was horrible! I didn't want to go to sleep - I was exhausted. Poor baby...please give her a hug from me and tell her I admire her for trying so hard every day! It must really be a pain...for all of you. You will be in my prayers! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 In a message dated 1/30/2004 10:12:43 PM Central Standard Time, monica-jb@... writes: Can you imagine? , I can just a little bit! I can't imagine what it's like to be scared every night! The few times I have been scared, it was horrible! I didn't want to go to sleep - I was exhausted. Poor baby...please give her a hug from me and tell her I admire her for trying so hard every day! It must really be a pain...for all of you. You will be in my prayers! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 In a message dated 1/30/2004 10:12:43 PM Central Standard Time, monica-jb@... writes: Can you imagine? , I can just a little bit! I can't imagine what it's like to be scared every night! The few times I have been scared, it was horrible! I didn't want to go to sleep - I was exhausted. Poor baby...please give her a hug from me and tell her I admire her for trying so hard every day! It must really be a pain...for all of you. You will be in my prayers! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 In a message dated 1/30/2004 8:33:05 PM Central Standard Time, Mdmssmile@... writes: Did Mayo tell you that narcolepsy and Add are treated the same way? I never knew that. Yes, they did, . I asked them if they were basically the same thing, because I wanted an answer, and I wanted Mike to hear the answer. What he said was that at this point, it's really a matter of Semantics, as they are treated with the same medications. Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 In a message dated 1/30/2004 8:33:05 PM Central Standard Time, Mdmssmile@... writes: Did Mayo tell you that narcolepsy and Add are treated the same way? I never knew that. Yes, they did, . I asked them if they were basically the same thing, because I wanted an answer, and I wanted Mike to hear the answer. What he said was that at this point, it's really a matter of Semantics, as they are treated with the same medications. Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 In a message dated 1/30/2004 8:33:05 PM Central Standard Time, Mdmssmile@... writes: Did Mayo tell you that narcolepsy and Add are treated the same way? I never knew that. Yes, they did, . I asked them if they were basically the same thing, because I wanted an answer, and I wanted Mike to hear the answer. What he said was that at this point, it's really a matter of Semantics, as they are treated with the same medications. Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 No, she can't sleep well at all. She goes back and forth with her rituals. Sometimes she will spend hours organizing her room. Her problems about sleeping are that she has these rituals she has to do in just the right order, and until they feel just right before she goes to bed. Then, she lays there and worries about scarey things that may happen to someone in our family. She's allways afraid there is someone watching her from outside her window. She has bad dreams alot. I mean really scarey ones. She told me about one the other night, and I got really scared myself just thinking about it. Her rituals have gotten better since she's been on the celexa, but they aren't gone. Her therapist is gonna work on her sleep. When we don't sleep right, we can spend a lot of time in that " dream state " and not get into the deep sleep state. People who do that, have a lot of bad dreams. I think that's the right explination. Then, of course, they are tired a lot. Anyway, she doesn't sleep well, and has trouble falling asleep. She is really scared. She's scared all the time, but it's worse at night. Can you imagine what it would be like to live like that? Can you imagine being the mom of a girl who feels that way? Can you imagine being in a family with someone who has this horrible disorder? It is horrible for everyone in the family. And my poor baby suffers so. She has her whole life. I knew she had OCD when she was 2, by the way she had to take her socks off and put them on until they felt just right. And, the same with her shoes. Then, the laces needed to be tied just right, and the bows symetrical. I just didn't know about the anxiety and being so scared until about 2 1/2 years ago. She's suffered with that in silence all her life. I could go on and on about what rituals she does, but it would take a book. Can you imagine? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 My isn't bother at all with any good smells. Isn't that weird? But, when picking out a lotion or shampoo, she has to smell every single one on the shelf until she find just the right one. UUGGHH! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Sounds like OCD to me. But, they only really treat it if it takes up a lot of time. I think they say anything over an hour a day. was taking at least 3 hours a day, sometimes more for her rituals. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Sounds like OCD to me. But, they only really treat it if it takes up a lot of time. I think they say anything over an hour a day. was taking at least 3 hours a day, sometimes more for her rituals. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 In a message dated 1/31/2004 8:26:29 PM Central Standard Time, monica-jb@... writes: I was gonna ask again when and where the conference is. I must have deleted that. The conference dates are as follows: July 14-18, 2004 July 14th, Wednesday, is set up mainly for the group representatives meeting July 15, Thursday, we have the opening session, workshops, and opening reception. July 16, Friday, workshops continue. Later that day, around 3:00 you will be on your own to sight see or relax, except for our lucky representatives. The group reps will be meeting again for part two of their group rep meeting full of stimulating ideas to take back to your group. Don't worry group reps, we don't plan to keep you all night. Probably from 3:00-5:00. (For sight-seeing information call the Buffalo Convention & Visitors Bureau at 1-8882BUFFNY or 1- for those of us who don't like to figure out those letters.) July 17, Saturday, we are very excited to have the following at our Medical Talks: Dr. Byers, Dr. Ulrike Schwarze, Dr. , and Pepin MS, CGC - all of whom are from the University of Washington, Dept. of Pathology, Collagen Diagnostic Laboratory. Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 In a message dated 1/31/2004 10:03:59 PM Central Standard Time, monica-jb@... writes: I don't even have the dx yet anyway. That wouldn't matter at all, , but I CAN understand you not wanting your daughter to fly alone. But if there's any way, we'd LOVE to see you! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 In a message dated 1/31/2004 10:03:59 PM Central Standard Time, monica-jb@... writes: I don't even have the dx yet anyway. That wouldn't matter at all, , but I CAN understand you not wanting your daughter to fly alone. But if there's any way, we'd LOVE to see you! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 In a message dated 1/31/2004 10:03:59 PM Central Standard Time, monica-jb@... writes: I don't even have the dx yet anyway. That wouldn't matter at all, , but I CAN understand you not wanting your daughter to fly alone. But if there's any way, we'd LOVE to see you! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 I was gonna ask again when and where the conference is. I must have deleted that. It helps so much to know other people who have the same problems as she does. When she first found out, she thought she was crazy. Then, the first person she told, one of her teachers, told her that his wife has OCD too. Oh boy, did that make her day! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 I was gonna ask again when and where the conference is. I must have deleted that. It helps so much to know other people who have the same problems as she does. When she first found out, she thought she was crazy. Then, the first person she told, one of her teachers, told her that his wife has OCD too. Oh boy, did that make her day! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 I was gonna ask again when and where the conference is. I must have deleted that. It helps so much to know other people who have the same problems as she does. When she first found out, she thought she was crazy. Then, the first person she told, one of her teachers, told her that his wife has OCD too. Oh boy, did that make her day! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 So, Buffalo, NY? I doubt I'll be able to go. I don't even have the dx yet anyway. I see Dr Byers is speaking. I'm seeing him on the 16th with my daughters. It would be nice to go, then I could hop over to Corning to visit relatives. But, we are thinking about going to Atlanta when goes to her youth medical forum about this time so she won't have to fly alone, which she doesn't like to do. (I'll also be very worried about her flying alone and then trying to find out where to go once she gets there). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 In a message dated 1/31/04 11:06:39 PM Eastern Standard Time, monica-jb@... writes: << I see Dr Byers is speaking. I'm seeing him on the 16th with my daughters. >> You will most likely at least have an idea of whether he believes this is a possibility......some come to the conference to see if they can get confirmation of their diagnosis by speaking to some of the doctors. And remember......for many types of EDS there is no definitive way to diagnose the condition.....I'm sure there are many who are not sure but come to be amongst those who are like themselves. Everyone is always welcome to come to the conference, it is not just for those with EDS. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 In a message dated 1/31/04 11:06:39 PM Eastern Standard Time, monica-jb@... writes: << I see Dr Byers is speaking. I'm seeing him on the 16th with my daughters. >> You will most likely at least have an idea of whether he believes this is a possibility......some come to the conference to see if they can get confirmation of their diagnosis by speaking to some of the doctors. And remember......for many types of EDS there is no definitive way to diagnose the condition.....I'm sure there are many who are not sure but come to be amongst those who are like themselves. Everyone is always welcome to come to the conference, it is not just for those with EDS. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 In a message dated 1/31/04 11:06:39 PM Eastern Standard Time, monica-jb@... writes: << I see Dr Byers is speaking. I'm seeing him on the 16th with my daughters. >> You will most likely at least have an idea of whether he believes this is a possibility......some come to the conference to see if they can get confirmation of their diagnosis by speaking to some of the doctors. And remember......for many types of EDS there is no definitive way to diagnose the condition.....I'm sure there are many who are not sure but come to be amongst those who are like themselves. Everyone is always welcome to come to the conference, it is not just for those with EDS. Hugs, Sue 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.