A JOURNEY WITH NO REAL DESTINATION

In December of 2010 I was diagnosed with Lupus/Mixed Connective Tissue Disorder. In March of 2011, I was diagnosed with Ehlers-Danlos Syndrome, type 3. The MCTD/Lupus Dx was incorrect, they should call EDS "ACTD", (All Connective Tissue Disorder)!
Since my Ehlers-Danlos diagnosis, I have read a few wonderful blogs that have inspired me and touched my heart. One blog brought me to my knees; I cried, my heart broke, I laughed, I smiled and I identified with this Katie's story. Reading her journey made me realize that I wanted to share my own.
Details are not something I spare and I have never been a girl of few words. I hope I inspire you, educate you, motivate you and touch your heart. I hope by writing this, I learn, understand and accept my new journey...Is there a destination?

Thursday, April 19, 2012

POTS


Many people that have Ehlers Danlos Syndrome also have some form of a condition called Dysautonomia. Most EDSers that I know have been diagnosed with a type of Dysautonomia called POTS. No, POTS is not when you walk around with a pot on your head; it stands for Postural Orthostatic Tachycardia Syndrome. EDS is not the only condition that "brings on the POTS", there are many! Did you know that Astronauts suffer tremendously from POTS when they return from space. Hmmmm. I'd never thought of this before but on my bad "POTS Days" I am very Spacey! :O) Some of the "pros" call it "Scrooge Syndrome" and say POTS is caused by a small heart which (in their opinion)is directly related to lack of exercise and immobility. Well, in my case I KNOW they are WRONG WRONG WRONG! Whew! If you know me even a tiny little bit you know I have a HUMONGOUS heart and even on my worst days, I run around like Speedy Gonzales! 
I'll discuss this more in a blog later this evening once the boys are in bed. Just wanted to "throw something" out there to start contemplating! 
It's THANKFUL THURSDAY! Tell me 3 of the most RANDOM things you are thankful for today! :O)(Come on y'all, think up some good ones!)
Here are my 3 (Gosh, can I keep it to only 3?)
1. Old people, I LOVE to hug them and do things to make them happy!
2. The fact that my kids are so hilarious, they make me laugh everyday...without fail. 
3. Feet (it would be kinda hard to walk without them!)

Gentle Hugs y'all! We are off to Pig out on Pizza! 

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