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

Archive for April, 2011

Five for Friday 4/30/11

Written by Katie. Posted in Five For Friday

1.  Medical Stuff: 

  • 1 day of PT: More circuit work, more pelvic clocks, and I graduated to the full foam roller for back stabilization marches!  Woot! Woot!
  • 2 days of home rehab.
  • I had my tri-weekly Dr. Rosen appointment.  The quote of our session (which should be the quote for my life) was, “All you need to worry about is making today right.” ~Dr. L. Rosen.  I also followed Larry’s instructions and showed Dr. Rosen my Apollo 13 poster.  He gave me another A+, and thought it was a genius exercise for me to do.  Gotta love the team approach when it comes to my docs. 
  • It’s been a week of increasing my Propranalol.  I haven’t felt a huge difference, but hopefully when I add Midodrine to the mix next week, I will feel better. 

This is all I got…

Written by Katie. Posted in Ehlers-Danlos Awareness

I came across a couple of interesting blog posts by eye doctor, Diana Driscoll about EDS and POTS, and the possible MS connection.  You can read them here.  (It makes more sense to read the second one first and then scroll up to read the first one.)

POTS in Toledo

Written by Katie. Posted in POTS Appointments


April 20th was finally the day I had been waiting for!  Brad and I went to Toledo for my POTS appointment with Dr. Grubb’s nurse practitioner, Beverly.  When I was diagnosed back in November, I researched, and researched, and researched POTS like it was my job.  I would say that 90% of what I found about POTS was either written by Dr. Grubb (an electrophysiologist), was written by a team of doctors including Dr. Grubb and Beverly, or included quotes from Dr. Grubb.
When I went to see Dr. Tinkle in Cincinnati for EDS, Dr. Tinkle told me I needed to get in to see Dr. Grubb because he has such a strong understanding of not only, Dysautonomia, but also how POTS and EDS play into each other.  However, I was warned that it takes quite some time to get into him because people all over the country travel to see him. 

Five For Friday 4/22/11

Written by Katie. Posted in Five For Friday


1.  Medical Stuff:
  • 1 Day of PT~I did a new circuit that had me rotating through light treadmill work, light elliptical work, Body Gym squats, and toe raises…I also did arm and back strengthening, balance exercises and my PELVIC CLOCKS!
  • 1 Day of home Rehab.
  • I had prolo round 4 on Monday on my neck, upper back, mid back, and ribs.  I go back May 31st for round 5.
  • On Wednesday I went to Toledo to see Dr. Grubb’s NP, Beverly, for POTS.  I am still working on this (long) blog post, but I will say that my appointment did not disappoint.  I left with a much better understanding of why my body is doing what it is doing, and hopefully ways to help better manage my POTS. 
  • I filled a prescription for Midodrine for POTS.  I don’t start it for 2 more weeks though.
  • My open toe compression stockings just came in the mail!  As soon as I try them on, I will grace you all with a picture. I better make sure my toes are pretty first!