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

Five For Friday 1/28/11

Written by Katie. Posted in Five For Friday

Overall, it has been a better week. I feel like I have been a rehab’n machine, which is good since my health is my job these days.

1.  Medical Stuff:

  • Had 2 sessions of PT. Had to wear my new shirt to PT on Wednesday:
  • Saw the GI doc at U of M on Tuesday, and was prescribed Domperidone for stomach flares.
  • Saw my new PCP on Wednesday.  He was very willing to learn with me.   I think he will be a good fit.
  • Saw the high risk pregnancy doctor on Thursday.  I learned quite a bit…Brad and I have a lot to think about.
  • Started Florinef and the Testosterone cream. So far so good.  No chest hair yet.
  • Did a lot of home rehab exercises including these…
 I have such a love-HATE relationship with these superwoman’s.
I feel like such a weakling but I gotta keep at it…Plus I’m taking Testosterone 🙂

We\’ve Got Tonight

Written by Katie. Posted in Music

This will either make me cool, or really uncool (I don’t even think that is a word but oh well) depending on who you are but I cannot tell you how giddy I have been all day since I read this morning that Bob announced he will be touring again starting in March. 

I grew up listening to Bob.  My Dad has always loved him and he passed that love on to me.  I always remember singing to him as we sat around our camp fires at Lake Leelanau.  When Brad and I talk about our “desert island” albums, Bob Seger’s Greatest Hits is one of two albums that we both agree on in our all time top ten albums.

POTS in South Bend

Written by Katie. Posted in POTS Appointments

We spent so much time in Dr. Lavallee’s office, so we had to race to my third appointment a couple blocks over with Dr. Halleran, a cardio electrophysiologist.  Dr. Lavallee referred me to him for POTS. 

My appointment started with an Echo (which must have been fine because they didn’t say anything about it).

Dr. Halleran came in and listened to my history and my symptoms.  He explained a lot about POTS and that he actually does not like the name POTS because this disorder has to do with a lot more than just tachycardia. 

Ehlers Danlos in South Bend

Written by Katie. Posted in Ehlers-Danlos Appointments

After seeing Dr. Cantieri, we headed to South Bend.


My next appointment was with Dr. Lavallee, who is a sports medicine doctor, who also specializes in Ehlers Danlos.  He actually has Ehlers Danlos; the classical type, meaning it affects his skin and he also has the extreme joint hypermobility.  I had no idea what to expect from this appointment, except I was pretty excited to talk to a doctor who actually lives with what I am living with.