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. 

http://dysautonomiadetour.blogspot.com/2011/07/with-me.html

More POTS in the News

Written by Katie. Posted in POTS Awareness

It seems I come across a lot more articles about POTS that are written in the UK, than the US.  I wonder why that is…Anyways, here’s the latest POTS article I found.  I tend to look for more info about POTS when I am struggling with it more myself.  I really hope that articles like this can continue to spread awareness.  Yay, Dr. Grubb!

http://www.telegraph.co.uk/health/8596450/How-gravity-can-knock-you-sideways.html

Energy Smarts

Written by Katie. Posted in Ehlers-Danlos Awareness, My Creations, Other Appointments, POTS Awareness

I had my monthly Larry appointment today.  At my April appointment, Larry graded my Apollo 13 homework assignment he had given me after I spent my March appointment with him in serious meltdown mode tears about life in general.  After I received my A++, Larry gave me another assignment, which was due today.  My assignment was to show some kind of scale that represented things I COULD do on a 0%, 25%, 50%, 75%, and 100% energy day. 

This assignment was meant to help me reframe my thoughts.  So instead of getting upset and saying something like, “Oh my goodness, it’s a 25% energy day and I can’t dust the house,” I could instead look at it as, “It may be a 25% energy day but I CAN do a load of laundry, some floor exercises, and post on my blog.” 

A++

Written by Katie. Posted in Ehlers-Danlos Awareness, Favorites, My Creations, Other Appointments, POTS Awareness

If you recall a while back, at my last monthly appointment with Larry (Sports Med doc and the “captain” of my medical team), I was given an old fashioned homework assignment.  After having a mental breakdown in his office, he gave me this task…To watch Apollo 13, and relate it to my EDS and POTS by creating any craft project I want.  All he told me was he wanted me to pay attention to the energy conservation theme. 

I watched the movie on Monday (yes, I had a whole month and procrastinated until the day before just like the old days) and ended up taking 6 pages of notes.  It took me 4 hours to watch the 2.5 hour movie because I kept rewinding to make sure I had info, space lingo, and quotes correct.  Then I went to work on my “crafting.”