My Epilepsy Story

Full Plate

Life has been so busy here. I have so many things to update everyone on. We have had two wonderful benefits for the organization since I last blogged. One was in Atlanta and the other was in Nashville. They both were held at The Hard Rock Cafe and AStar promotions helped coordinate both of these. Thank you so much to the Hard Rock and AStar!

In the past month, I have traveled to Atlanta, Washington, D.C., Boston, and Martha’s Vineyard while running to get to see my daughter run her first year of cross country. Someone asked me a few days ago if I traveled a lot and I said no but then said well, the last month I have traveled quite a bit. In Atlanta, we had one of our recent benefits for the organization and I also went back to Emory for the MONEAD research project that I am participating in. I was able to meet with our board chair, Dr Kimford Meador, before he left Emory to take his new position at Stanford. I must say, I was a little sad knowing that he was leaving Emory and heading off to Stanford because Emory is only 4 hours away. This is an exciting opportunity for Dr Meador and I look forward to traveling to Stanford soon to see him there. While in Atlanta, I was able to attend the COPE Investigators Meeting and meet with Dr. David Loring for the COPE research project. I shared with the COPE researchers about the My Epilepsy Story organization. Dr. Loring and I then traveled to Washington, D.C. to present our COPE research project before the PCORI Board of Governors. This was an exciting opportunity to get involved in research and have the patient’s voice heard. I met so many wonderful doctors that are passionate about allowing the patient to have a voice. PCORI is wonderful! Make sure you check out the link below and watch our presentation.

While in D.C., I had the opportunity to meet Eric Miller, face to face, for the first time. Eric lost his wife, Carolina, to SUDEP and has shared her story on our website. He is also the driving force behind 50 Concerts in 50 States. It was so great to finally meet after talking with him for almost two years. I look forward to seeing where our friendship will lead and participating next year in 50 Concerts in 50 States with him.

I was then off to Boston to participate in a video shoot about my personal epilepsy story. As the video is finalized, I will share more about this opportunity. It was great to have this opportunity as well as make some new connections. I had meetings and then headed to Martha’s Vineyard for a moment of rest before heading back to Nashville.

On a personal note, over the past few months I have struggled with having my plate full of too many things. In life, sometimes we think that we can do it all or have it all without something suffering. The reality is that we cannot have it all. We must choose the things that are important and then put down the things that are not. We also need to remember that things are not going to be perfect and in those imperfect times comes sweet memories. After having a heart to heart with one of my mentors, he reminded me that my plate was too full and I needed to give some things up. He told me that this didn’t make me a failure it would make me better in the end. In life we have to let go of jobs, friendships, relationships, school, commitments, etc because they come at the wrong time. This doesn’t mean that we will never have these opportunities again, it just means that the timing is not right or something better is out there. However, when the timing is right for things we need to give them our all. I would encourage each of you to go to your quiet place and sit for a while. For me, my quiet place is Sewanee, TN where I love looking at older homes that have “history” with them. I dream of moving there one day….. I was able to go there and regroup. When I am there I can dream about the future and see the good things that are to come. I can also see what I need to get off of my plate so that I can focus on what I am supposed to be doing. I am thankful to have wonderful people in my life that encourage me to be the best that I can be and remind me to let go of things that are not right for me at this time in my life. Be encouraged in what you are doing and remember that it is okay to take some things off your plate. Here are a few photos from this last month. Where is your quiet place?

Watch our presentation panel here (We start 35 minutes into this webcast. Feel free to skip ahead to it.): http://events.mediasite.com/Mediasite/Play/f2e67451274449cf9401bf01ab8b5cae1d?catalog=8bc52422-173e-4698-83d0-bea739eca1c4

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Disclaimer: Education materials on our website offer general medical information based on up-to-date evidence and, when available, practice guidelines. They are not intended for individual medical advice. Please refer to your treating physician to understand how this information may be applied to your care.

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