Music.  Relationships. 

Relationships.  Music. 

These are the two things that have gotten me through this past year without going crazy.  These are the two things that I lean on heavily everyday for my survival.  For my sanity.  For my motivation and inspiration.  For my Faith.

I could write for hours and hours about both of these topics, and as I continue to blog, I know that they will keep surfacing as major players in my life.  U2 is something I have been meaning to write about since I saw them in concert at Spartan Stadium a little over a week ago.  It is funny because the first 27 years of my life, I liked U2.  They made up a chunk of my running playlist.  I would watch some of their concerts on Palladia.  I knew and admired that Bono was really involved with various charities. 

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.”  

There’s a lot I want to blog about, but yet I don’t want to blog about.  I know that doesn’t make sense whatsoever.  My mind is one, big jumbled up mess.  I hope you all reading will bear with me, while my “jumbles” start to straighten themselves out.


So I am going to just type random stuff, because that is how I roll today.  Very, very random.

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. 

I realize my posts lately have been a lot of copying, pasting, and redirecting you all to other sites.  As I am trying to spread awareness for Ehlers Danlos Awareness month, I have also been battling an intense amount of fatigue, tachycardia, headaches, brain fog, neck pain, and have therefore, been honestly having some pretty emotional and frustrating days.  Thus, my posts have been pretty short recently. 

…BUT what’s my mantra?  “This too shall pass!”

I have wanted to post about my weekend since Sunday, but I knew it would be best if I waited for my body to start behaving better, so I could actually write coherently.