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

You Just Never Know…

Written by Katie. Posted in Favorites, Memorable Experiences

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. 

A++

Written by Katie. Posted in Ehlers-Danlos Awareness, Favorites, My Creations, Other Appointments, POTS Awareness

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.” 

Wake Up Call

Written by Katie. Posted in Challenges, Favorites, Music

Sometimes you need a wake up call.  Usually I try not to whine about the little things that get me down about EDS and POTS, but yesterday I failed at this. Big time.

It was 84 degrees and sunny yesterday.  In all other years I would have been ecstatic about this weather; especially on April 10th.  I would have broken out my Reef flip flops and capris, and spent as much time as I could outside reading, relaxing, and soaking up some rays.  I would have also probably have gone and gotten my first pedicure of the season. 

But not yesterday.  I whined and complained all day.  I even got on MY nerves after a while. 

The "What NOT to Do" Conclusion

Written by Katie. Posted in Challenges, Favorites, Memorable Experiences

Well, I do have to say that persistence does pay off.  I may have overreacted a lot bit, but not knowing to me is the WORST.  If I know I have something, then I can start to deal with it, but I do not do well with the waiting game.

I did not get a call yesterday and stressed, and cried, and prayed, and slept fitfully throughout the night.  I felt like I was back to the summer and the fall, waiting, and waiting for answers.  Thankfully, this morning I was called with the answer I was looking for.

"Making the Invisible, Visible"

Written by Katie. Posted in Ehlers-Danlos Awareness, Favorites

This pretty much sums it up.  Honestly, the first thing I thought of when I watched this, was “Welcome to my world.”  Out of all the videos I have watched and things I have read, this one has rang the most true for me…And she talks about struggling with POTS as well. I love, love, love that she is working towards a marathon.  Makes me wish I could hug her.