Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Being Your Own Advocate is a MUST

Written by Katie. Posted in Challenges, Diagnosis Path, Editorials, Memorable Experiences

The following article really spurred me to want to write this post.

http://www.aarp.org/health/conditions-treatments/info-06-2011/what-to-do-when-your-doctor-doesnt-know.html

I was reading it when Brad looked over at me and said, “What are you doing?  I didn’t even notice it but I was nodding my head repeatedly as I read the article.

I have been through some crazy times in my short 29 years, but nothing has ever compared to the extreme amount of stress I felt last year when the doctors could not figure out what was wrong with me.  When I think back, I wonder how I got through it still standing.

A Different but Similar Perspective

Written by Katie. Posted in Editorials, Favorites

My friend Ila, who also has EDS and Dysautonomia recently sent me this blog post she came across to read (If the rest of this post is going to make sense, then you should read the post from the link above first).  I read it a few times, and have thought long and hard about this person’s perspective.  I totally respect what this person has to say and her experiences with both Dysautonomia and EDS.  There are so many things she says that I found myself nodding my head in agreement to.  However, there are a few things from this post, that I would like to just bring a different perspective to.  I feel that we must keep in mind that when someone blogs, it is one person’s perspective, based on their personal and individual experiences.   


I, myself, have to realize that when I post about EDS and POTS, it is from my experiences, and my experiences only; MY symptoms, My struggles, My triumphs, and where I am on the very wide spectrum of both disorders.  I know there are going to be things I say along the way that people disagree with, but when I started this whole blogging thing, I knew that was all part of the “game.”  

The Bright Side of Chronic Illness

Written by Katie. Posted in Editorials, Favorites, Positivity

Dr. Rosen asked me at my last appointment if I wished I was never diagnosed with EDS.  I was already emotional and actually got kind of angry at his question.  Without any hesitation, I snapped back that of course I wish I didn’t have EDS. 

After I left my appointment that day, it was as if Dr. Rosen’s question was haunting me.  I could not get it off of my mind.  I realized as I thought more and more about it that the answer to that question is not as black and white as I thought it was at the time.  I took that question with me to therapy.  I took it with me to Georgia.  I sent my Aunt Mada a Facebook message about it to see what her perspective was since she lives a full and active life with MS.  And then I thought about it some more. 

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