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

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?

50 Goals Progress Report 6 1/2 Months In

Written by Katie. Posted in Goals

We are more than halfway through 2011.  Crazy.  I figured it was time to revisit my goals and see where I am. 

Goals are a beautiful thing.  They keep me focused and driven. They keep me pressing on.  I am thankful for my many years as an athlete where we were expected to set goals regularly and keep track of our progress.  Goals keep me in the zone.
Dr. Lavallee told me at the end of my appointment in January to make sure I have goals set; both long-term and short term.  He stressed that is always important to be working towards something; especially when illness is involved.  I couldn’t agree more. 
It is interesting to look back and see the goals I set for myself back in January.  It is also interesting to look at the new goals I have set for myself 6 months later.  I have definitely learned that goals must be flexible and at times need to be altered as life happens. 
Anyways, here is my “mid-year” goals progress report.

Good Times Around the Bend

Written by Katie. Posted in Challenges

Many people often comment on how positive I am.  I do pride myself on the fact that I usually can find a silver lining in hard situations, and I don’t take myself too seriously.

But tonight I am struggling. 

Not because I had a bad day, or a bad POTS appointment.  In fact, I saw Dr. Grubb today, and my appointment went well, and I have to say that Dr. Grubb truly is an incredible man. 

But sometimes life smacks you in the face and it is overwhelming. And exhausting. And you feel vulnerable and defeated.

Five For Friday +1…7/8/11

Written by Katie. Posted in Five For Friday


1.  Medical Stuff
  • 1 Day of PT.  Had a re-eval and made a few new goals.
  • 2 Days of Home Rehab.
  • Had my monthly Larry appointment.  We talked a lot about future goals, while he did some gentle manipulative medicine on my neck.
  • I saw Dr. Rosen.  To be honest there was not much of a theme to this appointment.  Even though I was all over the place, I still think I sorted a few things out in my crazy, jumbled up mind.  It always helps me to be able to really talk things through.

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