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. 

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…

Back to the grind.  Meeting my new children.  New Mumford and Sons.  New DMB.  New Avett Bros.  

I have learned a thing or two since I was diagnosed in 2010.  I always have to preface these posts with the fact that I am speaking for myself, since EDS and POTS are such “spectrum diseases.”  

1. summer
2. fro-yo
3. feta
4. my hair stylist