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.
| Pounds lost: 14.2