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

Riding the Roller Coaster

Written by Katie. Posted in Challenges

Let me just say that I am realizing that Ehlers Danlos and POTS are such weird disorders.  There is so much inconsistency with how they affect me day to day.  Last week was such a better week for me.  I didn’t need my cervical collar as much, it felt like my meds were really doing a good job controlling the POTS, and I was able to rehab with much more stamina. Then Sunday and Monday came and POTS and EDS decided to hit me like a ton of bricks.  My joints felt so loose and I had to use my wheelchair again.  Sigh.

I keep saying I just don’t understand these disorders.  I have kept journal after journal trying to pinpoint patterns so I can try and predict good days and not so good days.  So far these are a few of the patterns I have been able to find…

Adios Week!

Written by Katie. Posted in Challenges

This week was a struggle.  I think I cried more this week than I have in a long time.  I have been pretty quiet on the blogging front, because I have tried to take Thumper’s advice of, “If you can’t say anything nice, don’t say anything at all…”

On Sunday, I knew this week was already going to be tough.  I had gotten used to having Brad around the last two weeks, and I knew I would have to adjust to being on my own again during the day, since he went back to work Monday.  That in itself, got me kind of down. 

Breathe In, Breathe Out

Written by Katie. Posted in Challenges

WARNING:  What you are about to read is not full of positivity.   

 I promised the good, the bad, and the ugly, and today is just one of those days where I hope getting it out in writing will give me a dose of therapy I need.

Overwhelmed. With. Life.  That pretty much sums it for me.  I hit a wall yesterday and Brad ordered me to bedrest today.  I think I experienced yesterday what Dr. Tinkle was talking about when he said Type A people usually struggle the most.

Curveballs

Written by Katie. Posted in Challenges, Favorites

September was the month I would be starting my 6th year of teaching.  August was the month Brad and I were supposed to start trying to have a family.  July was the month we were supposed to go to Gun Lake with friends.  June was the month I would get to see my favorite band, Dave Mathews Band in concert.  None of these things happened.


If the last year has taught me anything, it has taught me that life throws curve balls that are often beyond my control.  This has been a very hard lesson for me to learn; one that is extremely hard to accept for a type A, control freak like myself.  I have also learned that putting timelines on life doesn’t always work out as well.

EDS Tweets

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POTS Tweets

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