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

Archive for November, 2012

This One Goes Out to My Docs #NHBPM Carnival

Written by Katie. Posted in Diagnosis Path, Ehlers-Danlos Appointments, Medical Team, Other Appointments, POTS Appointments

Topic: What’s something your doctor taught you?

Well, as I am sure it is true for many of you, I have many doctors.  Each one has taught me so much along the way as I have learned to manage both EDS and POTS.  Finding such a great team of doctors did not happen overnight.  It took a lot of travel, a lot of help, and a lot of patience.

Zebra Questions #NHBPM Carnival

Written by Katie. Posted in About Me, Chronic Illness, Lists, Questions

Topic: What questions do you have for other patients?

One of the most important things for me is sharing with fellow zebras.  There is nothing like being able to talk to someone who is living a life similar to mine.  I’m sure many of you will understand what I mean when I say what an amazing feeling it is to meet someone who just “knows” what you are going through, because they are living it too. 

Let\’s Hear It for the Caretakers #NHBPM Carnival

Written by Katie. Posted in Chronic Illness, Favorites, Lists, Thankful

Topic: Write about your advice for someone caring for a patient with your condition

Caretakers in my opinion are unsung heroes.  Often it is the person who is sick that receives the caring phone calls, messages, care packages, etc.

My caretakers are the ones who have been behind the scenes, making phone calls for me, sitting with me during doctor’s appointments, driving me around the Midwest to see specialists, being there when I fall apart, making meals, bathing me, encouraging me, picking up prescriptions, supporting me, taking on more household duties, pushing my wheelchair, being my cheerleader, and the list goes on, and on, and on…

Five For Friday 11/16/12

Written by Katie. Posted in Five For Friday

What a CRAZY, busy week.  At a few points, I was not sure I would make it, but I am happy to say that I got through.  It feels good to sit here now, still in my PJ’s, drinking coffee, knowing that next week I have two work days, and then I will be able to relax with my family!

1.  Medical Stuff:

  • 3 Days of Home Rehab.
  • No PT this week.

EDS Tweets

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POTS Tweets

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