It was so great getting someone responding to one of my posts. I was lucky enough a few weeks ago to have a lovely lady email me about getting pregnant with EDS. I felt really great being able to share my pregnancy and to put her heart at ease about getting pregnant. I was so happy to know that after reading my post and talking to her doctors, she has decided to have her baby after all. I seem to have so many people looking at my blog, but at times I felt like the only person in the world with EDS, but it was a total buzz to have someone contacting me! Then only a few days ago another woman simply said...."I know how you feel" and those few words made me smile and stopped feeling alone. 'A shared concern or worry if halved', or so they say, so let's get talking and sharing ideas so we have a support network who understands.
I'd love to hear from anyone........anytime!
Rowena
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Hi Rowena! You're certainly not alone. I know it can feel like it though. Been going through a bit of that myself.
ReplyDeleteI have a subluxed shoulder I am nursing right now. Typing with one hand is interesting. ;)
Have you met Viv through the EDNF? She has a young teen daughter with EDS. I'm not sure where in NZ they live. I'll send you her email address privately.
hugs and hang in there!
~e
Thanks so much Elise! I hope your shoulder is better really soon. I haven't met Viv, but I would like too!
ReplyDeleteYou take care
Rowena X
Hi! A friend just passed on your link to me. I was diagnosed in April just gone (Classical EDS) after being 'sick' for 7 years or so. I've got 2 children and I'm pretty sure they've got EDS too. Sigh.
ReplyDeleteHi Rowena! Great to meet you!! I completely understand how much the phrase 'I know how you feel' means! Isn't it just like you just melt at the thought of someone truly understanding what it is we go through?! My blog has been a bit help in this - I hope yours is too. Just recently, people have started putting comments on my page and sending me heartfelt emails - allowing me in their world and to view their stories - it is so touching, so inspiring. Let's connect! I would love another EDSer who is into health and nutrition! And, it is so great to hear that you and your son have what seem like mild forms at the moment! I am glad you don't have to endure the pains on a regular basis. Nice to meet you and have a wonderful week!! xoxo Dani
ReplyDeletehttp://DanielleDavisEDS.blogspot.com
i was just dx'd, but not subtyped yet. after my last child, i was having trouble healing and decided to look into it, and this is phase one. surgeries to follow will be complicated by eds. i see my oldest child and my youngest both seem to have symptoms and i should get them tested and subtyped. start of a long journey i've already been on with out knowing it, but knew something had to be up re: a lot of pain, sprains, flexibilities, etc...over a lifetime. glad to see you putting the word out. and my middle child has aspergers syndrome with low muscle tone, etc...but no hyperflexibility
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