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. 

You never know who you will meet on any given day.  Better yet, you never know who you will come across that will have an impact on your life. 

On the way to Philly my Mom and I sat together on the plane.  You’d think this would be a good thing, but it was not.  I freak her out with my “Oh God’s” “What’s that noise?” “Are we going down?” 

On the way home it just so happened that my Mom and I sat apart.  Although I hate to admit this, I usually do better sitting next to someone I do not know, because I feel like I have to hold it together.  I can’t be grabbing on to a stranger’s arm every 2 minutes.  That could get me into big trouble. 

If you recall a while back, at my last monthly appointment with Larry (Sports Med doc and the “captain” of my medical team), I was given an old fashioned homework assignment.  After having a mental breakdown in his office, he gave me this task…To watch Apollo 13, and relate it to my EDS and POTS by creating any craft project I want.  All he told me was he wanted me to pay attention to the energy conservation theme. 

I watched the movie on Monday (yes, I had a whole month and procrastinated until the day before just like the old days) and ended up taking 6 pages of notes.  It took me 4 hours to watch the 2.5 hour movie because I kept rewinding to make sure I had info, space lingo, and quotes correct.  Then I went to work on my “crafting.”