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


Written by Katie. Posted in Random

What a week so far!  Prolotherapy round 4 was Monday in Indiana, I helped host a jewelry party yesterday (what was I thinking the day after prolo?), and I was in Toledo all day today for the POTS appointment I’ve waited six months for…Tomorrow I have PT and then I will get to updating if I don’t crash after therapy. 

You Just Never Know…

Written by Katie. Posted in Favorites, Memorable Experiences

You never know who you will meet on any given day.  Better yet, you never know who you will come across that will have an impact on your life. 

On the way to Philly my Mom and I sat together on the plane.  You’d think this would be a good thing, but it was not.  I freak her out with my “Oh God’s” “What’s that noise?” “Are we going down?” 

On the way home it just so happened that my Mom and I sat apart.  Although I hate to admit this, I usually do better sitting next to someone I do not know, because I feel like I have to hold it together.  I can’t be grabbing on to a stranger’s arm every 2 minutes.  That could get me into big trouble. 

Five For Friday 4/15/11

Written by Katie. Posted in Five For Friday

After a big week last week of Bob Seger and Philly, I knew I had to lay pretty low this week…Sunday and Monday I was a mess, but by Tuesday I was feeling a lot more human.  Hopefully these five won’t bore you to tears…Especially since I have only a couple of pictures.  Everything on my computer was wiped out yesterday.  I still don’t know why.  Sighhhhhhhhhhhhhhh…

1.  Medical Stuff: 

  • 2 days of PT.  Circuit work and elliptical work.  I tried to do the recumbent bike yesterday but I was “taching” too much (heart rate too high) so I had to stop.  At least I got in a good amount of strengthening before the POTS attack hit.
  • 2 days of home rehab.
  • I had my monthly appointment with Larry.  I turned in my Apollo 13 assignment, we talked about where I am at with my goals/progress, what to discuss with Dr. Cantieri on Monday and Dr. Grubb’s NP on Wednesday, and we figured out a plan for my continuing physical therapy.
  • After going over my sources of pain, we realized that EDS is affecting my jaw.  It keeps popping and subluxing, giving me some of my neck and jaw pain.  I am to wear my mouth guard more, and watch it.  If it gets too bad, I can be referred to a doctor who only works on TMJ problems.  I have also heard you can have prolotherapy on your jaw.  Hmmm… 
  • Larry wrote me a prescription for a new pain med cream I had to have made at the compound pharmacy to help with spasms; especially in my neck (since I HATE taking muscle relaxers).  He also wrote me a prescription for open toe compression stockings!
  • The good news about open toe stockings?  They are open toe.  The bad news about open toe stockings?  They only come in opaque, not sheer like my other ones.  I guess beggars can’t be choosers, right?  I am still waiting for them to come in the mail.


Written by Katie. Posted in Family

As you know, my Mom and I traveled to Philly April 5-9 to visit my older sister, Kristen, my brother-in-law, Jake, and my niece Cecilia.  The pictures I am posting pretty much sum up the trip.  We spent most of the time at Kristen and Jake’s house just hanging out, which is just what the doctor ordered. 

On Wednesday and Thursday Kristen and Jake had to work so my Mom and I got to be Cece’s “daycare.”  So tiring, but so FUN.  On Friday, Kristen took the day off and Allie drove from Maryland for the day.  So what do you think the five of us girls did?  Lunch and shopping of course!  Saturday, it was already time to go back to Michigan. The trip went so fast.

EDS Tweets

How is it possible that my mom is ALWAYS gone when I have a health crisis or have an invasive procedure scheduled? #EDS

IsaJennie IsaJennie

POTS Tweets