Freedom.

Life is such an amazing roller coaster ride.  While this year has presented me with some crushing heartbreak (not to mention some really ridiculously tough times on the bike) there have also been many moments of tremendous hope, faith and the peace that I believe can only be gained by knowing you did your absolute best.  My best includes being an advocate, sharing my experience, being a connector of people and ideas, and being willing and open to learn.

I have been in two Artificial Pancreas clinical trials through Mount Sinai Hospital in NYC.  Two different sets of algorithms from two different universities.  I was recently asked to lend my story to an ongoing advertising campaign which Mount Sinai has been running since this summer.  I received no compensation for the ad and certainly didn’t get any sort of preferential treatment trying to schedule doctor’s appointments this week.  I still pay my endocrinologist out-of-pocket and move mountains to figure out my insurance coverage and the cheapest way to get my HA1c.

Here’s what I did get:

The chance to spread accurate information about the Artificial Pancreas Project (in the center of the New York Times magazine this past Sunday).  I was given right of refusal and the ability to make changes to the copy throughout the process of the ad’s creation.  If 1 person sees that ad, calls and makes an overdue doctor’s appointment, then I’m happy I did it.  If it encourages 1 person’s curiosity regarding our current diabetes technologies which we have fought so hard to obtain, then I’m glad.  If this helps convey my own sense of hope, then awesome.

I believe we all have chances to advocate.

Opportunities come in all sorts of odd and surprising forms.

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3 thoughts on “Freedom.

  1. I LOVE this…..just wish it was you on the Pinata bike or covered in silly string. this photo looks lonely and kinda sad…but GIRL, I am so proud of you! Love and hugs

  2. Well done! Kudos to them for giving you right of refusal. My local paper published an article written by a person with diabetes recently, all save for the headline which they added the words “diabetes sufferer” to.

    • Thanks, I think because it was an ad, and I needed to sign Hippa forms, that helped (I had a newspaper say I hadn’t had a good night’s sleep for 35 years with T1D… yeah, I don’t sleep great but I have made it through the night). “Suffered from diabetes” was my first objection. I politely explained through examples like the Paris attack, that “suffering” is a word I would not come close to using. They were great about it and I really do believe everyone learned a bit about T1D. Good stuff. And thanks!

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