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

Five For Friday 1/30/16

Written by Katie. Posted in Five For Friday

1. Medical Stuff:

  • 1 Day of PT. Running in place with a leg band around my ankles is HARD.
  • 2 Days of Home Rehab. Treadmill, recumbent bike, and floor strengthening.
  • No doctors!

2. Well, that is a wrap for the first semester! One down, one to go…This week was full of report cards, testing, paperwork, testing, report cards, paperwork…and more report cards, testing, and paperwork! I can now forget testing for a while and go back to what do what is actually developmentally appropriate for 4, 5, and 6 year olds. (Cue a big sigh of relief : ) )

3. As we speak, I am currently working with our webmaster on getting the benefit concert pages up on our website…if all goes well, technology cooperates, annnnddddd the stars align, tickets should go on sale on Monday or Tuesday! Stay tuned…! www.ZebraNation.org…

4. Sometimes you come across something that really speaks to you. I read this quote by the Dalai Lama this week, and fell in love.

“Every morning think as you wake up:
I am alive,
I have a precious human life,
I am not going to waste it.
I am going to use all of my energies to develop myself,
To expand my heart out to others,
To achieve enlightenment for the benefit of all beings.
I am not going to get angry,
Or think badly about others.
I am going to benefit others as much as I can.”

5. Thank you all for your prayers, good mojo, and thoughts for my friend Susan who had a stroke last week…This is one of her latest messages…they are working! Keep ’em coming!

So, people have been wondering HOW I had the stroke. But I had been sick with that nasty virus, and coughing so much. Guess you could say I really did almost cough my head off. The core issue is a disease I have, called Ehlers Danlos Syndrome. It is a genetic thing and basically means I don’t have enough of the glue that holds us together. We always thought I just had the hypermobility type, which makes me very flexible and ‘double jointed’. But it turns out my vascular system is effected too. So I coughed really hard, and it caused what is basically a whiplash injury… it only took the smallest nudge to push things over the edge from there. My artery tore. The inner lining of my Vertebral Artery separated from the rest of the vessel. This formed a flap in there, which pushed up and blocked the blood flow to other arteries, which caused the stroke. And all of this IN my brain stem. To summarize – I should be dead. And at the very least, I should be paralyzed from the neck down. Which is almost too much to even process. The doctors have said there must still be something left for me to do in life… and I still catch them staring at me sometimes. Apparently I’m the talk of the hospital. Go big or go home I always say, LOL! So that’s the scoop. I’m still at a serious risk for another stroke until that artery heals. And even afterwards. But God has gotten us this far…. guess he can manage the rest.

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