There’s always an air of excitement when it is time for me to return to Toledo to either see Bev or Dr. Grubb.  I think it’s because it took so long for me to get into them, knowing that they are two of the best Dysautonomia experts in the world.  Call it hope, call it an understanding, call it an appreciation for doctors who care and “get it”…call it what you will, but it never seems like a chore to travel to Toledo to see these two incredible doctors and people. 

I recently received an email from a Mom whose daughter has just been diagnosed with EDS and POTS.  She had questions about my exercise routine with POTS and EDS.  It made me think about how I have really neglected this blog the last few months.  I am honestly having trouble finding the time and the energy to keep everything updated, but I am going to try and do better.  I feel it’s important; especially for awareness and documentation sake.  When I think back to why I started this blog in the first place, one of the reasons was to document my journey for learning to live with EDS and POTS.  When I was really sick, I remember looking all over the Internet for blogs that did the same. I found such comfort in reading about other people’s stories that were so similar to mine. 

1.  Medical Stuff:

• 1 Day of PT.  I was able to get back on the Reformer after doing my cardio on the Elliptical.  I find that I actually miss that “torture chamber” if I am away for it for more than a week.  I think I have kinda, sorta fallen in love with it.  It works my whole body; especially my core, while being kind to my joints.  Now I just need to figure out how to get in more Reformer sessions during the week.  (I never thought I would say that).

1.  Medical Stuff:

• 3 Days of Home Rehab.
• Physical Therapy was canceled because my physical therapist was sick.  Lots of sickness going around lately!
• No doctors appointments this week.
• I had major issues this week with my POTS flaring, and therefore insomnia.  Sometimes my heart rate gets so high that it feels like I am running a marathon when I should be sleeping.  Insomnia then makes my POTS worse and it ends up being a vicious cycle.  So needless to say, it has been harder to function this week, but I keep telling myself that like everything else, “This too shall pass.”

“KATIE, Tell me you have spoons.  TELL me you have spoons. TELL ME YOU HAVE SPOONS!”

This is how it all began, after I finally called my cousin, Jen back after she had already tried to reach me 4 times.