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

A Heartfelt Letter Written by a Friend

Written by Katie. Posted in POTS Awareness

I read this letter this morning, which was written by a fellow POTSy friend.  It is beautifully written, honest, and REAL.  I found that it reflected a lot of what I have also tried to express to others this past year about having POTS.  I encourage you to read Susan’s letter if you have the time.  As tears streamed down my face as I read, I just kept thinking, “Thank you, Susan,” for putting into words the emotions that come with redefining life after being diagnosed with this crazy thing called Dysautonomia. 

http://dysautonomiadetour.blogspot.com/2011/07/with-me.html

Heat and Tunes

Written by Katie. Posted in Music

The heat can break any time now.  I have been experiencing a whole new level of fatigue lately and I am convinced that it is because of this ungodly heat.  It’s really weird because even when I am in the air conditioning, it feels like my body still knows that the heat index is 105 degrees. 

Just something else I am learning.  Extreme heat + POTS = Bad combo for me. 

So glad to see relief is in sight by Monday. 

Since I have been spending a lot of time in the AC, I have been trying to work on a few pretty exciting projects, as well as immersing myself in music.  Here’s a few of my favorite tunes right now…

POTS in Toledo Round 2

Written by Katie. Posted in POTS Appointments

Last Monday, Brad and I traveled to Toledo to see the infamous Dr. Grubb.  When I was first diagnosed with POTS, I researched Dysautonomia like crazy.  Dr. Grubb’s name kept coming up over and over again.  From there, I read many of his research papers about POTS and other types of Dysautonomia. 

I made it my mission to see him after I was diagnosed, so I called his office back in November, and the very nice nurse explained that I would have to wait more than a year for an appointment.  However, she explained that I could see the NP, Beverly, in about 4-6 months.  I told her I was totally fine with that.  Therefore, at the beginning of December I faxed the office all of my test results and diagnosis paperwork.  In March, I was called to set up my first appointment with Bev for April.  On April 20th, I saw Bev for the first time. 

Five For Friday 7/15/11

Written by Katie. Posted in Five For Friday

1.  Medical Stuff:

  • I had my follow up POTS appointment with Dr. Grubb in Toledo.  I need a chunk of time (as well as some time to really process the info and my emotions) to post about the appointment.  I will get to it as soon as I can find a good amount of time + a good amount of energy.
  • 1 Day of PT
  • 2 Days of Home Rehab
  • I’ve needed a new neck this week!  Anyone have one they want to give me?

EDS Tweets

Twitter response: "Invalid or expired token."

POTS Tweets

Twitter response: "Invalid or expired token."