Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 In a message dated 3/3/04 6:16:57 PM Eastern Standard Time, kdavis@... writes: << The next issue of EDS Today is about the decision whether or not to have kids, and my story will be in that issue. >> I can't wait to see the issue! My sister is getting married in August and I can pass the issue on to her. She has not been tested (but primary doc is sure she has it) and is not sure about what to do, but maybe reading other's opinions will help her with her decisions. Thanks, Sue Ginley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 In a message dated 3/3/04 6:16:57 PM Eastern Standard Time, kdavis@... writes: << The next issue of EDS Today is about the decision whether or not to have kids, and my story will be in that issue. >> I can't wait to see the issue! My sister is getting married in August and I can pass the issue on to her. She has not been tested (but primary doc is sure she has it) and is not sure about what to do, but maybe reading other's opinions will help her with her decisions. Thanks, Sue Ginley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 In a message dated 3/3/04 6:16:57 PM Eastern Standard Time, kdavis@... writes: << The next issue of EDS Today is about the decision whether or not to have kids, and my story will be in that issue. >> I can't wait to see the issue! My sister is getting married in August and I can pass the issue on to her. She has not been tested (but primary doc is sure she has it) and is not sure about what to do, but maybe reading other's opinions will help her with her decisions. Thanks, Sue Ginley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Hi , > Fortunately, though, my > husband and I don't plan on having children. We do have a dog, > though. :-) Me too! My husband and I knew from the time we met 10 years ago that we weren't going to have kids. We both have EDS. We adopted a dog just over 3 years ago and he's quite enough. The next issue of EDS Today is about the decision whether or not to have kids, and my story will be in that issue. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Hi , > Fortunately, though, my > husband and I don't plan on having children. We do have a dog, > though. :-) Me too! My husband and I knew from the time we met 10 years ago that we weren't going to have kids. We both have EDS. We adopted a dog just over 3 years ago and he's quite enough. The next issue of EDS Today is about the decision whether or not to have kids, and my story will be in that issue. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Hi , > Fortunately, though, my > husband and I don't plan on having children. We do have a dog, > though. :-) Me too! My husband and I knew from the time we met 10 years ago that we weren't going to have kids. We both have EDS. We adopted a dog just over 3 years ago and he's quite enough. The next issue of EDS Today is about the decision whether or not to have kids, and my story will be in that issue. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 > I can't wait to see the issue! My sister is getting married in August and I > can pass the issue on to her. She has not been tested (but primary doc is > sure she has it) and is not sure about what to do, but maybe reading other's > opinions will help her with her decisions. I'm glad to know you're looking forward to it. EDS Today is doing a series on life-decisions including whether or not to have kids, pregnancy & childbirth, birth control, sterilization, etc. It's a bold venture, and one I hope resonates with our readers, regardless of which decisions they have made or will make on the issue of having kids. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 > I can't wait to see the issue! My sister is getting married in August and I > can pass the issue on to her. She has not been tested (but primary doc is > sure she has it) and is not sure about what to do, but maybe reading other's > opinions will help her with her decisions. I'm glad to know you're looking forward to it. EDS Today is doing a series on life-decisions including whether or not to have kids, pregnancy & childbirth, birth control, sterilization, etc. It's a bold venture, and one I hope resonates with our readers, regardless of which decisions they have made or will make on the issue of having kids. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 http://www.ndrf.org/NDRF%20Patient%20Handbook/SecB_pp265-274.PDF This has info on SSD and disability.... Re: Newbie in California , do you work or stay at home? Have young children at home? 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 March 3, 2004 Report Share Posted March 3, 2004 http://www.ndrf.org/NDRF%20Patient%20Handbook/SecB_pp265-274.PDF This has info on SSD and disability.... Re: Newbie in California , do you work or stay at home? Have young children at home? 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 March 3, 2004 Report Share Posted March 3, 2004 http://www.ndrf.org/NDRF%20Patient%20Handbook/SecB_pp265-274.PDF This has info on SSD and disability.... Re: Newbie in California , do you work or stay at home? Have young children at home? 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 March 3, 2004 Report Share Posted March 3, 2004 Thanks, . I just wondered if " fogginess " would be a problem for you, and if so, you should mention it to the rheumy so that he doesn't give you something that puts you in lala land. I take Ultram (Tramadol) and my doctor told me it wasn't a narcotic, so he felt better about giving that to me. I started with one each morning and night, and then went to two. He's told me I can take it a third time if I need to. It has done pretty well for me, and I didn't have any funny feelings from it. I also take Vioxx. Hope this helps. Love Lana p.s. you'll find lots of dog lovers on the list, as well as cat lovers, parrot lovers, lizard lovers, etc. Seems most of us have a pet of some sort! I have a cock-a-poo (Bucky). He's the REAL head of the household! LOL Re: Newbie in California Lana - I work full time as a speech therapist in an elementary school. I work with individual students or small groups of kids (my largest group right now is 4 students). I am able to sit for most of the day but also have the flexibility to get up and move around my office between groups of kids every 25-30 minutes. Plus, if I'm really achy I can fidget during a group. I've been able to do my job when I had my left arm in a sling and my right ankle elevated in a chair next to me. If I had been a regular classroom teacher, I think I would be in serious trouble with all the standing and would need to make serious modifications. As for your other question, I don't have any children, and I don't see how I would make it through the pregnancy, let alone chasing toddlers. Fortunately, though, my husband and I don't plan on having children. We do have a dog, though. :-) She can be enough trouble! But, the best thing about her is that she is an English Bulldog, which means she is lazy, so I don't have to worry about taking her on long walks or having her jump up on me and hurt me! Jen - I actually went armed to my primary care Dr with printed out articles as well as the Beighton and Brighton criteria all highlighted. He glanced at the criteria sheets adn I didnt bother to show him the others (linking syncope, fatigue, and anasthesia effects to HEDS and HMS) since he was willing to refer me to the rheumatologist. But, I plan to bring the same articles to show the rheumy. I figure if nothing else, it helps show that I have some idea what I'm talking about and I find the doctors tend to treat patients who have done a little research with more respect. And with documentation, I feel less like a hypochondriac. I was also planning to check withthe nurse about his experience with EDS, but I haven't gotten the return call yet. It is nice to hear that I seem to be taking some of the right steps. 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 March 3, 2004 Report Share Posted March 3, 2004 Thanks, . I just wondered if " fogginess " would be a problem for you, and if so, you should mention it to the rheumy so that he doesn't give you something that puts you in lala land. I take Ultram (Tramadol) and my doctor told me it wasn't a narcotic, so he felt better about giving that to me. I started with one each morning and night, and then went to two. He's told me I can take it a third time if I need to. It has done pretty well for me, and I didn't have any funny feelings from it. I also take Vioxx. Hope this helps. Love Lana p.s. you'll find lots of dog lovers on the list, as well as cat lovers, parrot lovers, lizard lovers, etc. Seems most of us have a pet of some sort! I have a cock-a-poo (Bucky). He's the REAL head of the household! LOL Re: Newbie in California Lana - I work full time as a speech therapist in an elementary school. I work with individual students or small groups of kids (my largest group right now is 4 students). I am able to sit for most of the day but also have the flexibility to get up and move around my office between groups of kids every 25-30 minutes. Plus, if I'm really achy I can fidget during a group. I've been able to do my job when I had my left arm in a sling and my right ankle elevated in a chair next to me. If I had been a regular classroom teacher, I think I would be in serious trouble with all the standing and would need to make serious modifications. As for your other question, I don't have any children, and I don't see how I would make it through the pregnancy, let alone chasing toddlers. Fortunately, though, my husband and I don't plan on having children. We do have a dog, though. :-) She can be enough trouble! But, the best thing about her is that she is an English Bulldog, which means she is lazy, so I don't have to worry about taking her on long walks or having her jump up on me and hurt me! Jen - I actually went armed to my primary care Dr with printed out articles as well as the Beighton and Brighton criteria all highlighted. He glanced at the criteria sheets adn I didnt bother to show him the others (linking syncope, fatigue, and anasthesia effects to HEDS and HMS) since he was willing to refer me to the rheumatologist. But, I plan to bring the same articles to show the rheumy. I figure if nothing else, it helps show that I have some idea what I'm talking about and I find the doctors tend to treat patients who have done a little research with more respect. And with documentation, I feel less like a hypochondriac. I was also planning to check withthe nurse about his experience with EDS, but I haven't gotten the return call yet. It is nice to hear that I seem to be taking some of the right steps. 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 March 3, 2004 Report Share Posted March 3, 2004 Re: Newbie in California Lana - I work full time as a speech therapist in an elementary school. Welcome ! I'm a speech therapist too. I've applied for SSD because I was in too much pain when I was working with the early childhood program. I worked in a school district for 7 months, doing an interim job as 40% SLP and 60% SLP aide working with early childhood thru 3rd grade. Before and after that I did long term sub assignments in middle schools and grade schools. I started out in nursing homes till PPS ruined the ability to work regular hours! I went back for my masters and a degree in Speech Language Pathology when I was 36 and had 2 years of undergrad courses to take and 2 years of masters. I graduated at age 40.... That was before I knew I had EDS. My daughter and I were diagnosed in 1998 with a variant of EDS. We have symptoms from several of the EDS types. I have it traced on my mother's side of the family and possibly on my dad's side too.... I had a huge speech/language/artic/swallowing/voice survey on the net this summer and I'm still working on the stats.... 2 other SLP's are mentoring me on it... Again, Welcome to you and all the other newbies! Bonnie Heintskill, MS, CCC/SLP EDS Variant Milwaukee WI area Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Re: Newbie in California Lana - I work full time as a speech therapist in an elementary school. Welcome ! I'm a speech therapist too. I've applied for SSD because I was in too much pain when I was working with the early childhood program. I worked in a school district for 7 months, doing an interim job as 40% SLP and 60% SLP aide working with early childhood thru 3rd grade. Before and after that I did long term sub assignments in middle schools and grade schools. I started out in nursing homes till PPS ruined the ability to work regular hours! I went back for my masters and a degree in Speech Language Pathology when I was 36 and had 2 years of undergrad courses to take and 2 years of masters. I graduated at age 40.... That was before I knew I had EDS. My daughter and I were diagnosed in 1998 with a variant of EDS. We have symptoms from several of the EDS types. I have it traced on my mother's side of the family and possibly on my dad's side too.... I had a huge speech/language/artic/swallowing/voice survey on the net this summer and I'm still working on the stats.... 2 other SLP's are mentoring me on it... Again, Welcome to you and all the other newbies! Bonnie Heintskill, MS, CCC/SLP EDS Variant Milwaukee WI area Quote Link to comment Share on other sites More sharing options...
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