Luck Fupus

A lupus blog…

Big time, I’m on my way I’m making it…

You know that feeling after a fantastic first date, when you find exactly what you are looking for in your size, or a colleague you respect gives you praise? Best feeling in the world. That’s basically how I felt after driving home from the ePatient Connections Conference in Philadelphia a few weeks ago back in October. Yes, I am REALLY delayed getting this post up.

Originally, I was only supposed to attend the last session of day 1, a patient meet up where I would be facilitating a small group in brainstorming ideas on how pharma can increase patient engagement. I didn’t have to arrive until 3:30 that afternoon, so I had big plans to spend my morning doing a whole lot of nothing.

Imagine my surprise when 10am the day before, my phone rang and on the other end of the line was Bob Brooks, Executive Vice President of WEGO Health, and Kristin Mraz, Community Manager of WEGO Health, asking if I wanted to present at the conference. My first thought was Damn, I wonder who bailed. That said, I jump on any opportunity to attend conferences and speak, so honestly, I could have cared less if I was the 347238476th choice; of course I would present.

Bob and Kristin went over details; I would give a 30 minute presentation, giving insight on how for-profit health companies (pharma, medical devices, life sciences) can provide more tangible information to patients. We figured 20 minutes of talking and integrating Power Point slides, followed by 10 minutes of questions and answers would suffice. The downside was that I had less than 24 hours to put this thing together before I was expected to stand up in front of the attendees.

My mouth was saying “I got this!” while my brain was going FUUUUCK!

One would have expected I got straight to work, but, that wasn’t the case. I had a doctor’s appointment that was located 30 minutes away, and straight after had to get blood drawn. I should also mention it was pouring rain outside. Sore, creaky joints plus exhaustion after getting blood work was not a great combination for coming up with a presentation that would wow my audience. Frankly, when I got home, all I wanted to do was sleep.

It was a miracle I could keep my head up and type ferociously away at my keyboard. It was not a pretty day, there may have been some tears, a lot of cursing out Bob for giving me less than 24 hours (sorry Bob!), and wonderment how I could have multiple college degrees, yet royally suck at Power Point. About every 4 paragraphs written, I would read my presentation to Steve, and have him time and critique me. There may have been more cursing, but finally I put together a 20+ minute presentation.

I hardly slept that night and got up to the computer once or twice to make changes, and when my alarm went off it felt like I had just fallen asleep. Let the coffee be my guide.

I finally got to meet Kristin from WEGO Health in person. Over the past 2 years we’ve only had an online “relationship,” so meeting her was exciting; she’s every bit as great in the flesh as she is in email. I was introduced to the conference’s co-chairpersons (co-chairpeople?), Dr. Emily Freeman, risk management/global patient safety scientist at AstraZeneca, and Jodi Seidler, President of 2 Hip Productions. Right away the 4 of us were chatting and cracking jokes, which is always an indicator of a great day ahead.

And then it was time for me to go up and do my thang. As usual, the 20 or so minutes I was speaking felt like an outer-body experience, but at the same time, I was fully caught up in the moment and could tell I had everyone in the room captivated (yeah, I fucking rocked it). As I was sharing my story and showing pictures of myself that most people wouldn’t let anyone see, I could feel the emotions of my audience shift with what I was trying to convey. I’m especially self-conscious when it comes to my chemo-lupus brain fog, and sometimes I allow that to further trip up my words when I’m speaking. But, even as I stumbled, I shrugged it off and let myself just go with the flow. There was laughter, applause throughout, and I even got a “greats boobs!” from Jodi after I spoke of my mastectomy. All my years on stage, even when I played the sick bald boy with cancer (foreshadowing?), I’ve never captured an audience like I did in those 20 or so minutes. It was exhilarating, empowering, exciting, and any other adjective that begins with an ‘e.’

ePatient Connections

I received a standing ovation. I kid you not, I stood there gripping the podium looking out like a deer in headlights as everyone got to his or her feet and applauded for me. Unexpected to say the least, but I’d be lying if I said it wasn’t amazing as I took it all in. (Editor’s Note- I was the only one in two days of presentations who received a standing ovation. Toot toot!)

10 minutes of questions and answers followed, and by that point I had used all my brain power so I have no recollection of what I was asked. Once I sat back down it probably took 45 minutes for my heart rate and blood pressure to come down; it was one of the best highs of my life.

ePatient Connections

The next two days were just as much a rush as my presentation. I was in a room with patient advocates, pharmaceutical marketers, doctors, nurses- people who positively want to make a difference in the healthcare experience.

A panel of three patients turned authors shared their stories both struggling with disease, and the process of writing and publishing books. Wendy K Williamson and Honora Rose, authors of Two Bipolar Chicks Guide to Survivalwere raw and compelling as they described dealing with the trials of mental illness, and I loved that they took something that has such a stigma, yet turned that energy into a book that would educate and support others.

CaringBridge.org is a website developed by founder and CEO, Sona Mehring. After a friend had a baby prematurely, she asked Sona to update friends and family. Instead of making a number of phone calls, Sona created a website to go to for updates/photos/videos and to leave words of support, and from there CaringBridge was born. In 2002, CaringBridge became a 501(c)(3) nonprofit organization, providing support when those need it first. Many patients and families utilized CaringBridge when I was working as a nurse at CHOP, so it was wild to be in the same room as its founder. Yep, I went a bit fangirl on Sona. And we bonded over my Periodic Table of the Elements bracelet. Bonded. Elements. Chemistry. Anyone?

Sona & I #sodium

Sona & I #sodium

I got to meet fellow patient advocates Julie Cerrone of It’s Just a Bad Day, and Todd Bello of Overcoming Psoriasis. Julie gave an insightful presentation, starting by having the group find their zen by having us do some yoga (namaste), and Todd participated in a panel with more patient advocates, Kelly Conway,co-founder of the International Foundation for Autoimmune Arthritis  and my Lupus Sister, Leslie Rott who writes the amazing blog, Getting Closer to Myself. I met Leslie back in April at the GSK Lupus Summit, and it was great to reconnect with her again.

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Julie Cerrone

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Todd Bello, Kelly Conway, and Leslie Rott

 

 

 

 

 

 

 

 

I could go on and on about all the incredible presentations, and the number of influential people I had the luxury to meet, but we would be here all day.

I do have to throw in that I met Keith Olson, who works on a website called Your Care Moments, a patient community where you can sign up to do surveys to improve and enhance patient experiences. He and I got to talking, he told me a bit about what he does, I told him what I do, and soon we realized that not only did we both go to the same college, Rowan University, but in his past life he used to work in television, and worked on one of my favorite reality shows, Jerseylicious. Do you remember Jerseylicious? Probably not, because I’m quite certain I was the only one who watched it. I’m ashamed to say that once he told me, all I wanted to do was talk Jerseylicious, and not, you know, discussing how we could work together to better the patient journey.

Don’t you judge me.

See, even patients can learn about being healthy from Jerseylicious

So it took me 3 months to sit down and finally get this blog post published. This conference shook me up, in a good way. It got the wheels spinning, and the proverbial lightbulb turned on even brighter. I was influenced by every single person I met over those two days, and it was there that I realized there is SO much more I can do.

Thank you to WEGO Health, specifically Bob and Kristin, who had faith that I could throw something together in less than 24 hours. As always, you have been the bridge I needed to get me to bigger and better things!

TOP: Todd Bello, Bob Brooks, Julie Cerrone, Kristin Mraz BOTTOM: Kelly Conway, Jodi Seidler, MarlaJan DeFusco, Leslie Rott

TOP: Todd Bello, Bob Brooks, Julie Cerrone, Kristin Mraz
BOTTOM: Kelly Conway, Jodi Seidler, MarlaJan DeFusco, Leslie Rott

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Comments

  1. Kelli says:

    Yayyy you! It’s funny how sometimes your dreams and hardships come together into something completely wonderful.

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