Thank-you seems inadequate


The initial portion of the Social Media Mayo Clinic submissions for their Social Media workshop is coming to a close.  You had to have been under a rock if and haven’t seen my requests (translation: urgent pleas) to LIKE me and my essay.  I’ve reached out to so many people who know me and my work as a health advocate to support my efforts and  I want to send out thanks to everyone. I am touched that so many of you stopped to read my essay, register your LIKE or TWEET and  even take a moment to comment.   Your comments have left me smiling, even when they brought me to tears. All your words are a bright spot in an often difficult day.

Beyond the individual friends and family members who took the time to like me, there are a number of groups I want to acknowledge who have not only jumped in and helped to get the support for my essay but also have provided the platforms where I can learn more and interact with others.

A big thank you goes out to:

The WomenHeart sisters at, where this all started in 2008.  I may not know you personally but I know your questions and worries and doubts as you search for your new normal. Keep telling your stories so others can learn.

The Multiple Sclerosis forum family at, who I spend way too much time with via my laptop.  The whole group of you might as well be living in my basement, we are that close and talk that often.  If you doubt this, just ask my husband.  We all live with this MonSter, not knowing when it will rear its ugly head and we are in this battle together.

My local chapter of the American Heart Association and the GO RED for Women’s Heart Health committee, who allow me to share my story over and over. I know we are making a difference, one woman at a time and I am so happy to add my voice to the collection. We really do save lives when women (and men) listen to us and act when they suspect a problem.

The Ohio Valley Chapter of the NMSS, and the people who join me in the pool every week for our aquatics workout.  The OV chapter works to raise funds and awareness, while the swim group works to keep moving.  I am happy to be able to celebrate successes big and small with both groups.

My new friends at The Nancy Davis EraseMS foundation, who understand the value of celebrity in gathering attention for this cause.  Your sponsorship of emerging scientists is exciting and perhaps one of them will unlock the big answers for all of us.  You definitely are a specialty niche for MS support and I look forward to nurturing this relationship.

There are several groups and people on Facebook who graciously allowed me to post links to my essay and beg for support, and they include the WomenHeart group,  Heart Sisters,  P2P – Peer to Peer support for the Chronically Ill, and Trevis Gleason’s Life with MS.

I’ll wrap up this list with a special shout out to WEGO Health, a group of people who have gathered the top health activists who use Social Media.  WEGO describes itself on their Facebook page – ‘If online health communities are an unruly high school, then Health Activists are its dedicated teachers – and WEGO Health is the teacher’s lounge. We help leaders to come together, to learn from each other, and to go back to their classrooms better at their craft.”  Not only does WEGO Health offer great resources, they provide encouragement, enthusiasm and camaraderie for health activists.  You can find out more about  WEGO Health at I hope if you are a health activist you will consider joining us at WEGO.

Certainly I have overlooked some group, and my sincere apologies in advance for that oversight.  I know the Oscar winners are always forgiven for their oversights and I hope you will forgive mine as well.

This process of gathering likes was awkward -at my age, needing people to like me is just a distant memory from junior high days.  It takes an incredible amount of time and contacts to gather just a few likes  – it feels like an off-year election primary where despite all the money spent on campaigning, voter turnout is still low.  I can only hope the judges award points for effort and diversity.

I’m hopeful that I will be among the three people chosen for this scholarship, but if not, this has still been a valuable activity and made me stop and appreciate all the resources and opportunities I have been afforded because of my chronic diseases.  There are always little rainbows hidden in the clouds and reaching out to so many people for support has brought out quite a few of mine.

Understanding Social Media and how it influences the physician/patient relationship is a larger question than can’t be covered in a short week, and I am fortunate to work with some talented people who have agreed to help me with a new research project on this topic.  Whether I attend the Social Media Clinic at Mayo or not, my attention is turned toward looking for answers to this larger question:  How do patients use Social Media for guidance for their health care?  It’s a concept we know very little about and I am excited to delve into the topic further.  Stay tuned – we will be sharing our data for everyone to learn from.

Again, I extend my heartfelt thanks to each and every one of you who share this journey with me, both in our real life search for medical help and answers, and this scholarship contest through Mayo Clinic. I hope I will continue to have your support into the future, never knowing what is coming next.


Wishing you well,














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