Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 Hi. It sounds like we are very similar. By the way, I bruise very easily and my 15 month old type 1 OI daughter gets many nosebleeds. Congratulations on the upcoming wedding. I am sure you will be beautiful. -Sharon > >Reply-To: ceda >To: <ceda > >Subject: Hello! >Date: Sun, 16 Dec 2001 01:59:35 +0200 > _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2001 Report Share Posted December 16, 2001 Hi Jenni-Juulia -- Glad you made it to the list! and congratulations on your upcoming marriage! Hopefully some of the people with VEDS can answer your questions... Happy Holidays! --le Hello! > Hi! > I'm also new to the list. I joined you, because I'm trying to figure out, > what's wrong with me. I have not been diagnosed with EDS. > > My name is Jenni-Juulia and I have OI type 1. I haven't had many fractures, > but I have suffered from many kind of joint pain all my life. I appologise, > that I don't write english very well but I live in Scandinavia. > > I had an appointment with a doctor on friday. I haven't met him earlier, but > he was very good. He saw, that my right hip was not in a right position and > that caused a " snapping " (and hurting) sound when I walked. Because of the > hip pain I have walked with crutches about 2 years now. The doctor pulled my > leg and got the hip to the right position, and now I'm wearing a belt, that > keeps my hips together. He couldn't promise, that my hip will stay like > this, but he promised to pull my leg again if needed. I really hope that I > finaly get better. I'm getting married next summer and I wan't to walk the > isle without crutches. > > I don't know, if my harms are caused by OI, or is there something else wrong > with me? Is it possible to have both OI and EDS? Or does all OI:ers have > flexible and hypermobile joints? > > I have also had troubles with bleeding. I have got blood transfusions quite > often lately. A few years ago they found some tiny " angio dysplasia " in my > small intestine, but they were not bleeding during that examination. I'm > very anemic all the time and that makes me very tired and worried. I red > that people with VEDS have thin hair and especially thin skin. I'm happy > with my hair, but I can't say if my skin is VEDS type. It stretches well, > but what's normal and unnormal?Could someone give me more details about > VEDS, please? Is there any pictures of VEDS skin at the internet? > > One specialist told me, that OIers don't have trouble with bleeding. Never. > I don't know, why it was hard for me to believe him. Why do we get bruises > so easily then? Is there any bleeding OIers on this list? > > I have hypermobile fingers, but I think that's normal among OIers too. And > my scars do look like they are made of thin papyrus. But can these symptoms > be caused by OI? I don't know. > > It would be nice to read about your experiences. How did you get > diagnosticed etc? > > I would also like to express my gratitude to le, who told me about this > list. > > Thank you for your time, > > Jenni-Juulia (27, student, female, deeply in love > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2001 Report Share Posted December 16, 2001 Jenni-Juulia, Welcome to the group! I understood your English just fine. I don't have any answers for you but I bet someone on this list does. -Nanette " <jennijuulia.wallinheimo@s...> wrote: > Hi! > I'm also new to the list. I joined you, because I'm trying to figure out, > what's wrong with me. I have not been diagnosed with EDS. > > My name is Jenni-Juulia and I have OI type 1. I haven't had many fractures, > but I have suffered from many kind of joint pain all my life. I appologise, > that I don't write english very well but I live in Scandinavia. > > I had an appointment with a doctor on friday. I haven't met him earlier, but > he was very good. He saw, that my right hip was not in a right position and > that caused a " snapping " (and hurting) sound when I walked. Because of the > hip pain I have walked with crutches about 2 years now. The doctor pulled my > leg and got the hip to the right position, and now I'm wearing a belt, that > keeps my hips together. He couldn't promise, that my hip will stay like > this, but he promised to pull my leg again if needed. I really hope that I > finaly get better. I'm getting married next summer and I wan't to walk the > isle without crutches. > > I don't know, if my harms are caused by OI, or is there something else wrong > with me? Is it possible to have both OI and EDS? Or does all OI:ers have > flexible and hypermobile joints? > > I have also had troubles with bleeding. I have got blood transfusions quite > often lately. A few years ago they found some tiny " angio dysplasia " in my > small intestine, but they were not bleeding during that examination. I'm > very anemic all the time and that makes me very tired and worried. I red > that people with VEDS have thin hair and especially thin skin. I'm happy > with my hair, but I can't say if my skin is VEDS type. It stretches well, > but what's normal and unnormal?Could someone give me more details about > VEDS, please? Is there any pictures of VEDS skin at the internet? > > One specialist told me, that OIers don't have trouble with bleeding. Never. > I don't know, why it was hard for me to believe him. Why do we get bruises > so easily then? Is there any bleeding OIers on this list? > > I have hypermobile fingers, but I think that's normal among OIers too. And > my scars do look like they are made of thin papyrus. But can these symptoms > be caused by OI? I don't know. > > It would be nice to read about your experiences. How did you get > diagnosticed etc? > > I would also like to express my gratitude to le, who told me about this > list. > > Thank you for your time, > > Jenni-Juulia (27, student, female, deeply in love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2001 Report Share Posted December 16, 2001 Hi Jenni-Juulia, Our family also has been diagnosed with OI type 1, after being wrongly diagnosed with EDS for many years. Still, the family is very similar to EDS. I dont have OI/EDS myself....my husband and his family and our youngest daughter are affected. They are all very hypermobile and dislocate easily. They also bruise very easily, and my husband has papyraceous (papery) scars from some surgeries to fuse his spine. Do you belong to any OI lists? There are a couple I know of. I will have to get you the subscription address for one, but to join the other send a blank email to oiparents-subscribe@... . It is meant to be a list for parents of OI children, but there are lots of parents there who have OI themselves, and we do discuss adult issues. Also might be very useful if you are considering having children. Cheers, Glenda Canberra Australia Hello! Hi! I'm also new to the list. I joined you, because I'm trying to figure out, what's wrong with me. I have not been diagnosed with EDS. My name is Jenni-Juulia and I have OI type 1. I haven't had many fractures, but I have suffered from many kind of joint pain all my life. I appologise, that I don't write english very well but I live in Scandinavia. I had an appointment with a doctor on friday. I haven't met him earlier, but he was very good. He saw, that my right hip was not in a right position and that caused a " snapping " (and hurting) sound when I walked. Because of the hip pain I have walked with crutches about 2 years now. The doctor pulled my leg and got the hip to the right position, and now I'm wearing a belt, that keeps my hips together. He couldn't promise, that my hip will stay like this, but he promised to pull my leg again if needed. I really hope that I finaly get better. I'm getting married next summer and I wan't to walk the isle without crutches. I don't know, if my harms are caused by OI, or is there something else wrong with me? Is it possible to have both OI and EDS? Or does all OI:ers have flexible and hypermobile joints? I have also had troubles with bleeding. I have got blood transfusions quite often lately. A few years ago they found some tiny " angio dysplasia " in my small intestine, but they were not bleeding during that examination. I'm very anemic all the time and that makes me very tired and worried. I red that people with VEDS have thin hair and especially thin skin. I'm happy with my hair, but I can't say if my skin is VEDS type. It stretches well, but what's normal and unnormal?Could someone give me more details about VEDS, please? Is there any pictures of VEDS skin at the internet? One specialist told me, that OIers don't have trouble with bleeding. Never. I don't know, why it was hard for me to believe him. Why do we get bruises so easily then? Is there any bleeding OIers on this list? I have hypermobile fingers, but I think that's normal among OIers too. And my scars do look like they are made of thin papyrus. But can these symptoms be caused by OI? I don't know. It would be nice to read about your experiences. How did you get diagnosticed etc? I would also like to express my gratitude to le, who told me about this list. Thank you for your time, Jenni-Juulia (27, student, female, deeply in love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Welcome to the list and the beach. You can do this. I've been on nearly 11 months and lost 62 pounds now. I can't imagine eating any other way anymore. I don't even desire it. You are doing good to not follow the menu. I've found from observation that people that follow the menu don't lose as well for whatever reason. What I did was take the list, make up my grocery list with all the things on it that I love and put them in order of foods groups, that makes it easy to shop. If you do a search on SBD recipes, there are a lot of them. I think in the files too. Lots of them that are easy. Once you get to phase II and add in fruits and whole grains, you can use hundreds of recipes from all over and just change things: regular milk for skim, regular sugar for substitute, regular noodles for whole wheat, ext. Lots of recipes that are easier, and that will use the foods you bought from that list. I wish you lots of luck. You can do this. Believe me, if I can, anyone can. I am the person with the least will power. Well, I was before SBD. Carol Hello! Hi Everyone, I just joined the list today. My name is Shaunna, I am 42 yrs old, have been married 25 years Sept 8th to my high school sweetheart, , with 1 Son, Kameron, who is 14. We live in Northern California. I started SBD a week ago. Previously I was on Somersizing and before that Atkins, I had some success with both, but couldn't seem to stay on it long term and I need to lose at LEAST 100 pounds and can't afford to keep messing around. I found out my body is too acidic which may be from all the protein I was eating on the low carb diets, so along with SBD I'm trying to eat 80% Alkaline forming foods and 20% Acid forming foods. I haven't been following the duggested menu so I hope I'm still ok. I just bought the Cookbook, but I have to say I'm kinda disappointed in it as most of the menu's seem to call for things you don't normally have in your kitchen and seem labor intensive. I've been keeping it pretty simple with lots of salads mixed with Spinach greens, a little chopped meat (chicken breast or pork tenderloin) and garbanzo beans and some grape tomatoes with Olive Oil and Vinegar dressing. I also have been making large pots of lentils and also Navy Bean soup which I just cook in my crock pot with onion, garlic, celery and some Olive Oil. I know I will have to branch out or I'll end up getting bored but for now in Phase 1 plus watching the Acidic problem, I think this is best. If anyone notices me mentioning something I shouldn't be eating, PLEASE LMK! I have to get in an exercise program, am thinking of the treadmill at the local gym. My DH and I are going on a Mexican Cruise for our anniversary this year. Its Nov 14-21. I'm hoping to be able to lose 25 pounds between now and then. Thanks for letting me join, I look forward to getting to know you all better. Shaunna Kay Beauty ConsultantShaunna Frasureshaunnakaye@...tel: mobile: www.marykay.com/shaunnakaye Signature powered by Plaxo ... Want a signature like this? Add me to your address book...Reminder: The South Beach Diet is not low-carb. Nor is it low-fat. The South Beach Diet teaches you to rely on the right carbs and the right fats-the good ones-and enables you to live quite happily without the bad carbs and bad fats. For more on this WOE please read "The South Beach Diet" by Arthur Agatston, MD. ISBN 1-57954-814-8 This message scanned for viruses by CoreComm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Thanks Carol, Your message is the first I've received, I didn't even see my own post. I wrote to the List owner but that message bounced back, I was beginning to think I was alone out here! LOL! I would LOVE to lose 60+ pounds in a year, I'd be halfway to my goal weight, thats terrific, what a tremendous accomplishment for you. I'll have to look up those recipes you talked about in the files, thanks! Shaunna Kay Beauty ConsultantShaunna Frasureshaunnakaye@...tel: mobile: www.marykay.com/shaunnakaye Signature powered by Plaxo ... Want a signature like this? Add me to your address book... Hello! Hi Everyone, I just joined the list today. My name is Shaunna, I am 42 yrs old, have been married 25 years Sept 8th to my high school sweetheart, , with 1 Son, Kameron, who is 14. We live in Northern California. I started SBD a week ago. Previously I was on Somersizing and before that Atkins, I had some success with both, but couldn't seem to stay on it long term and I need to lose at LEAST 100 pounds and can't afford to keep messing around. I found out my body is too acidic which may be from all the protein I was eating on the low carb diets, so along with SBD I'm trying to eat 80% Alkaline forming foods and 20% Acid forming foods. I haven't been following the duggested menu so I hope I'm still ok. I just bought the Cookbook, but I have to say I'm kinda disappointed in it as most of the menu's seem to call for things you don't normally have in your kitchen and seem labor intensive. I've been keeping it pretty simple with lots of salads mixed with Spinach greens, a little chopped meat (chicken breast or pork tenderloin) and garbanzo beans and some grape tomatoes with Olive Oil and Vinegar dressing. I also have been making large pots of lentils and also Navy Bean soup which I just cook in my crock pot with onion, garlic, celery and some Olive Oil. I know I will have to branch out or I'll end up getting bored but for now in Phase 1 plus watching the Acidic problem, I think this is best. If anyone notices me mentioning something I shouldn't be eating, PLEASE LMK! I have to get in an exercise program, am thinking of the treadmill at the local gym. My DH and I are going on a Mexican Cruise for our anniversary this year. Its Nov 14-21. I'm hoping to be able to lose 25 pounds between now and then. Thanks for letting me join, I look forward to getting to know you all better. Shaunna Kay Beauty ConsultantShaunna Frasureshaunnakaye@...tel: mobile: www.marykay.com/shaunnakaye Signature powered by Plaxo ... Want a signature like this? Add me to your address book...Reminder: The South Beach Diet is not low-carb. Nor is it low-fat. The South Beach Diet teaches you to rely on the right carbs and the right fats-the good ones-and enables you to live quite happily without the bad carbs and bad fats. For more on this WOE please read "The South Beach Diet" by Arthur Agatston, MD. ISBN 1-57954-814-8 This message scanned for viruses by CoreComm Reminder: The South Beach Diet is not low-carb. Nor is it low-fat. The South Beach Diet teaches you to rely on the right carbs and the right fats-the good ones-and enables you to live quite happily without the bad carbs and bad fats. For more on this WOE please read "The South Beach Diet" by Arthur Agatston, MD. ISBN 1-57954-814-8 Quote Link to comment Share on other sites More sharing options...
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