Do you remember how one of my 50 goals for 2011 is to choreograph a dance?  Growing up, I was always choreographing with gymnastics friends and my sister, and it has always been a love of mine.  I helped my sister choreograph one of her last floor routines.  Dancing is definitely a hobby that I want to work towards to be able to do again with stamina. 

I’m sitting…ok lying here after PT trying to get my body to move but not having much luck.  I guess that is to be expected with my first PT session after prolo.  I did surprisingly well during therapy but I am definitely feeling it now.

On the Dysautonomia POTS FB page this morning, this status caught my eye:
“It is important that you recognize your progress and take pride in your accomplishments. Share your achievements with others. Brag a little. The recognition and support of those around you is nurturing.”  ~Rosemarie Rossetti


This quote was very timely today. 

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.

Let me just say that I am realizing that Ehlers Danlos and POTS are such weird disorders.  There is so much inconsistency with how they affect me day to day.  Last week was such a better week for me.  I didn’t need my cervical collar as much, it felt like my meds were really doing a good job controlling the POTS, and I was able to rehab with much more stamina. Then Sunday and Monday came and POTS and EDS decided to hit me like a ton of bricks.  My joints felt so loose and I had to use my wheelchair again.  Sigh.

I keep saying I just don’t understand these disorders.  I have kept journal after journal trying to pinpoint patterns so I can try and predict good days and not so good days.  So far these are a few of the patterns I have been able to find…

We spent so much time in Dr. Lavallee’s office, so we had to race to my third appointment a couple blocks over with Dr. Halleran, a cardio electrophysiologist.  Dr. Lavallee referred me to him for POTS. 

My appointment started with an Echo (which must have been fine because they didn’t say anything about it).

Dr. Halleran came in and listened to my history and my symptoms.  He explained a lot about POTS and that he actually does not like the name POTS because this disorder has to do with a lot more than just tachycardia.