Saturday, July 14, 2012

Two Year Check In and Goodbyes

Well, its been another two years and the diagnosis has changed.  I have Ehlers-Danlos syndrome, hypermobility type, aka HEDS, aka EDS-III.  That's why my surgery has been less than successful (the operated hip started subluxing again) and that's why most of my joints are now involved.  Apparently, the hips were just the first to go!

Anyhoo, I'm keeping this blog around, but I don't check it and I likely won't be keeping up with it.  That doesn't mean I'm deleting it though.  Back in 2004-2005 when the hip dysplasia thing was just happening to me, I would've killed for more information, even a quiet blog.  There was only one out there at the time, an old live journal account a woman kept and that saved my sanity.  Now its amazing!  Hip dysplasia resources and blogs are EVERYWHERE.  So you don't need me anymore, especially considering that my case is now known to be a bit on the unusual side.

If you still want to find me, I blog about life stuff at likelystory.wordpress.com.  Mostly recipes, crafty projects, the occasional health issue *cough* EDS *cough* and my dog.  Otherwise, take care all of you!  xoxo

2 comments:

  1. Heather - I live in CHS too and also have JHS. Any other doctor recommendations?

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  2. I have zero doctor recommendations, I am sorry to say. I have had a hell of a time here in SC finding good doctors and after 6 years, I'm tired of trying. As of yesterday, my latest is that my rheumy thinks the EDS/JHS isn't actually causing me pain, but that I have Fibro too and should go on Lyrica. So who knows?

    I'm sorry I can't be of more help, but my medical experiences in CHS have been dismal. I can however, recommend an excellent Pilates teacher who is trained in hypermobility issues - Lauren Dauscher at Coastal Body Pilates in Mount Pleasant. She is excellent! I go to her Weds. night classes and she is really helping me gain strength. I'm hyperextending way less because of her. I think she'll even let you go to the first class free. Check her out!

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Hi Guys. I don't really check this much anymore. You are welcome to comment though, I just can't always promise you a personal response. I do hope this blog has helped though!