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JODYLEMKE's Photo JODYLEMKE Posts: 22
4/25/12 4:43 P

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AARRGGHH!!!! I just spent 15 minutes composing my brilliant welcome message, Brandi, and my stupid iPad suddenly cancelled out. Oh, well, Consider it done. :-) This is a good group!

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DONNASUE76's Photo DONNASUE76 SparkPoints: (10,676)
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4/25/12 7:20 A

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Hi Brandi, welcome to the group. I'm a recent member myself. You certainly have your hands full, but it sounds like you have a great attitude and can handle anything it brings.

I've only known about EDS for a few short years, when my niece started having extreme joint problems. Since then, when my knee swelled, my wrist had phantom pains and weakness, and thinking of my long-time arthritis in my hips, I would ask doctors about the possibility it's EDS and was always emphatically told NO! My PCP sent me to a rheumatologist, saying he wanted the matter put to rest, and that doc confirmed it. I'm lucky in that it's fairly mild, although it seems to be getting worse now.

I don't have a great base of knowledge to help you, but I'm happy to be considered part of the support this group can offer you.

I know they can replace hips and knees, and was interested to read that your ankles have been reconstructed. My ankles are giving me trouble lately. It's been about 15-20 years since I've been able to walk long distances (such as a shopping day at the mall) and I wear elastic ankle braces every day now. I get around just fine, but wonder about the day that is even more restricted.

I wish you well on your weight loss! I'm trying to stick to my exercise bike on a more regular basis, and hope to see results myself.

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BRANDIBOCK's Photo BRANDIBOCK Posts: 38
4/17/12 12:40 A

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Iím so excited to find this team! It has been so difficult for me to find any support and I have now found a group that is struggling like myself and trying to lose weight.

I was diagnosed with Classic to Severe Classic EDS in October 2009. I have a lot of problems with my ankles. My right one was reconstructed in 2004, my left in 2010. Arthritis in my ankles, knees, hips, hands, and back. All of my joints dislocate on commandÖ.or whenever they feel it necessary. Lately I have run into the problem of my hips popping out while I am sleeping. My biggest problem with this is I have not yet mastered the technique of popping them back in.

Iím not sure about anyone else, but I have had the hardest time finding a doctor that knows anything about this condition, let alone how to treat it. The geneticist that confirmed my diagnosis was great. He knows it inside and out, and has been helping me find a treatment doctor. Most of the doctors tell me I am too young to be experiencing the problems I have and donít know what I am talking about. The last doctor I saw is a rheumatologist. She has started me on physical therapy for joint stability and conservation along with the recommendation that I lose as much weight as possible. I am really hoping that either or both of these help as there are days that I am unable to get out of bed. (This is not a possibility considering I have 3 kids).

So here I am. I found SparkPeople through MyPoints (a site I'm a member of) and am very glad I did. My mom has decided to take the weight loss journey with me but the most of the people I am around/related to are skinny. My fiance has decided to tone up with me and has become my trainer and motivator at the gym. SparkPeople has really helped to get me focused. I love being able to track everything, whether I have visible results or not, I can begin to see a change immediately.

Now, about myself: I am a 29 year-old, divorced, mother of 3. My boys are 8 and 7, my daughter will be 4 next month. I am a stay-at-home mom with a wonderful fiancť. I live on a farm in Nebraska and love most of my life. My daughter, Savannah, has a list of medical conditions a mile long (Iím sure EDS is on it) and is a severe special needs child with a wheel-chair, tracheostomy, and mickey button (feeding tube to the stomach). At 18 months doctors said she would not live to see 4Ö we only have 37 days to go!!!!!! She has started progressing in the right direction and the doctors have started to discuss the possibility of removing the trach eventually.

I think Iíve rambled on for a good amount of time. I am really hoping to find some good support and friends in this group.


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