First of all I know this will come as a huge surprise to some of you but I can't do it all. I try to convince myself that I can and then the big old MS monster arrives and reminds me I can't. Then I sleep for about four days straight until the fatigue gets better. Let's just say traveling to NJ followed by a super stressful week at work and several evening commitments really kicked my butt.
Second my laptop is being a big pain in the butt. It is only six months old and it has decided it doesn't want to charge anymore. So in order to get it to charge I have to position the cord in a very specific way and can't even move it a millimeter or it will stop charging. So yeah there is that. No laptop makes the to do list get very long.
Anyways got it to charge a little so going to quickly get this post out before I forget everything about my AMAZING weekend in NJ sponsored by Novartis (the makers of Gilenya which just so happens to be the MS treatment I'm on).
hotel (the Hyatt in Morristown, NJ) several hours later and had a few minutes to relax before the evening dinner. Check out my hotel room! My TV even had my name on it when I turned it on. Yes little things impress me. I'm use to staying in hostels. Haha!
The next morning we met downstairs in the hotel for breakfast and the summit. We were in a room off of the hotel lobby which made it very convenient. We didn't need coats or to go outside which was nice considering it was freezing out! Above is the great group of bloggers. I had so much fun getting to know each one of them. We all had one thing in common - MS of course but we all had so many differences too. It was so interesting to hear about everyone's experiences.
There were a few of us on Gilenya but Novartis didn't just invite people on Gilenya. They wanted to hear from all different views. I love that about them. Others were on Tysarbi, Tecfidera, Rituxan, or no treatment at all. One person had even done a stem cell transplant/clinical trial several years ago.
We represented California (2 bloggers), New Mexico, Florida, Virginia (2 bloggers), Delaware, Louisiana and of course Massachusetts (yours truly). Some were married, some weren't. Some had kids, some didn't. Some were diagnosed many years ago and some were newly diagnosed. DIVERSE group of amazing people!!!!
Here we are with the Novartis staff who participated in the summit. They were all amazing. They represented several different departments are were so interested in what WE had to say. They wanted to hear it all - good and bad. They really listened and genuinely cared about what we had to say.
It was great to be able to share feedback and see several of them taking notes. Oh and they kept thanking up. Like 100 times! I really feel like they will take the info we provided to them and use it with their staff to make some changes in how they do things. It is pretty awesome to know I can make that kind of impact that will affect so many other people living with MS.
How cool is that light that was hanging in the hotel?! Oh and we were important enough to make the hotel tv screens in the lobby. Again easily impressed.
Ming 2 and it was SO good. I had chicken pad thai and a delicious martini with a crazy garnish in it! Lychee fruit I think!?
We enjoyed even more great conversation and all left the restaurant full and exhausted. I think it was only about 8:30 when we got back to the lobby but we were all so tired we decided to call it a night and said our goodbyes. Oh and lucky me had the earliest pick up time the next morning. . .
I stood in the security line cursing every slow person in front of me. I ran to my gate with my boots in my hands (no time to stop and put those back on) and when I got to the gate the staff person said "Jodi?" Guess who was the last person to board the flight? THIS girl! Yup that's how I roll. The flight wasn't even half full and I don't think I got any glares from the other passengers. Whew! It was a close call. Too close. I was sweating! Haha!
It was such a fun time. I loved meeting the other bloggers and feel SO honored to have participated in this event.
Thank you Novartis for inviting me and being interested in my feedback. Thank you to all the other bloggers for sharing your experiences with me. I learned something from each and every one of you. I look forward to being in touch with each of you in the future!
Go check out their blogs:
· Dave Bexfield - http://activemsers.blogspot.
· Jamia Crockett - http://www.mymsheels.com/
· Jeri Burtchell - http://www.partnersinresearch.
· Joan Wheeler - http://shortinthecord.
· Jon Chandonnet - http://jonchandonnet.com/blog/
· Lisa Emrich - http://www.brassandivory.org/ and http://www.msbloggers.com/
· Matt Allen - http://www.mattsms.com/
· Nicole Lemelle - http://www.mynewnormals.com/
Let me know if you have any specific questions about the summit and I will try to answer them when I do my follow up post on what we discussed.