Saturday, July 6, 2013

Ehlers Danlos sign

This is my offical EDS sign for our secret club

A Ways to Go

I never realized until recently how many of my dreams I gave up on when I received my diagnosis. Everything became about security. Whether it was my job, my friends, my house it didn't really matter. I had to make sure I could take care of myself and that no one would have to worry about me.  I realized that I didn't want to lose control of the aspects of my life that I could still control. I really think I let this whole Ehlers-Danlos Syndrome thing take over but honestly it was so hard not to let it. It seems like every time I go to the Dr. they want to test me for something else and diagnose me with some other unknown problem linked to EDS and the amount of information they give you is astronomical and overwhelming. I miss dreaming about the future and being hopeful instead of scared of what EDS will do to me.  I need to start dreaming about the future again in a positive light instead of dwelling on the bad. More and more lately I am realizing that I am more than a diagnosis. I am more than my syndrome and I can learn to be positive and hopeful again and do the things that I want to do in my life. I may have a ways to go to get there but at least it's a start.

Thursday, February 7, 2013

Worn out

It takes a lot of strength to get up everyday align my joints and put on a smile. It hurts.  Even when something is not dislocated it still hurts. It always hurts.  Being positive has never really been tough for me though.  I have always thought that there is someone out there who would love to only have Ehlers-Danlos Syndrome and that I should be happy that it's not worse.  Someone recently told me that I must have been born with extra endorphins which I think might actually be true!  While being positive is a great thing it has really caused me to forget about myself and ignore the pain I am in which really gets me into trouble in the long run.  For my health I really need to start thinking about myself and learn to not ignore the pain and try to put my needs higher up on the priority scale.