March 19, 2017

Advisory Board – January and February 2017

Advisory Board – January, February 2017

Where does the time go?

The advisory January blog took a swing and a miss. We have been beautifully busy at Chronically Awesome. Between posting your blogs, working on our Quote Quilt project and beginning our photo gallery it is hard to begin. I suppose I will begin with the biggest and the best!

This year our participation in the 10th Annual Rare Disease Day was, by far, our best. With amazing stories of patients who live truly Chronically Awesome lives, facts about rare diseases, and even some puzzles for you to try. Chronically Awesome is a proud NORD partner on Rare Disease Day.

The City of Laguna Niguel proclaimed February 28th “Rare Disease Day.” It was a special thing to be able to stand with our city council and look out at the residents and make them aware of the lives of those of us who live with rare diseases and to thank them for noticing us.

Here at Chronically Awesome, we have seen joys and sorrows over the last few months.

Yes, we have been up and down, left and right, some of us have been turned inside out as we have kicked off 2017. One thing we must never forget, the best thing about being Chronically Awesome is that no matter what direction life pulls us in we are resilient. It is resilience that keeps us from hitting the rock bottom of chronic illness. We have all found our steady-state again. We are in our ‘known good condition.’

Never did we stop what we had to do in the face of life and say, “I cannot do this today, I don’t have enough awesome in me.” When the amazing and wonderful challenges or the heartbreaking tragedies happen in our lives, we step up. Awesomeness fills us to the top. Chronically Awesome is that paced, smart, calm, wise resiliency that takes us to the finish line of any race we run. It is then that we sit down, look around at what we have accomplished, and say, “Job well done.”

We are moms, sisters, husbands and wives. We work hard to help you become Chronically Awesome. We do it because we have seen first-hand what having that awesome can do for us when times get tough.

So, to my board, I say, “Job well done!”

jules signature





Leave a Reply

Your email address will not be published. Required fields are marked *