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. 


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?

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