HealtheVoices 2016

Last year I was invited to the inaugural HealtheVoices, but was unable to attend as my friend was getting married in Florida and I was singing at her wedding. (Post trip, I wrote this insightful piece)

Yup, that’s one thing you may not know about me. I love to sing. It’s apart of who I am and definitely something that describes me other than just a patient advocate or blogger. Check out this post about the time I had vocal nodules or this post about when I was in the American Idol experience at Disney.

I was really bummed to miss out on the opportunity to attend the conference, but I knew I’d have fun in Florida celebrating my friends Amy and Tim! But, after the conference, I can’t lie, I felt JEALOUS!

All of my friends who attended had had the opportunity to meet up in real life, and I missed out. I’ve had opportunities to meet up with other patients before, but most of these opportunities only bring a few together or they’re within the same disease state. I’m not complaining about that at all – I’ve created so many awesome friendship which have truly turned into family.

But this conference was different.

This one was giving me the opportunity to meet up, across disease states, and learn from each other.

The next time I met up with my psoFamily they were ranting and raving about how awesome it had been. I felt like the odd ball! The kid in school who’s parent’s didn’t allow them to go on the trip. I vowed to make it this year. Some way, some how, I was getting my butt to that conference.

Applications went out and I won’t even lie, I totally said a little prayer when I sent mine in. I had to be picked! HAD!!! I couldn’t miss out AGAIN!!!!

When I received my acceptance email, I was PUMPED!! Pretty sure I let out an audible YAAAASSSSSSSSSS!!!!!!!!!!!!!!!!! I was going to get to experience this awesome conference for myself.

So, to say I had high hopes and expectations coming into that weekend, would be an understatement.

Friday morning I got up and, as I was getting ready to head to the airport, I spilled my pill-box (don’t even get me started on this one. All the white supplements look the same…), my smoothie and my tea – I was so freaking excited I couldn’t even contain it. Seriously. So excited.

 

You might not think this about me, but I’m the type of person who worries about who I’ll sit with at conferences. Will it be awkward? What will we talk about? What if no one is talking to me? I always have a list of things in the back of my mind to bring up if there’s an awkward silence or things get tense. #sadButTrue

But going into that weekend, I wasn’t nervous. I wanted to meet as many people as I could. I had this grand idea that I would connect with every single patient advocate there. But once I got there, I was overwhelmed with the amount of people and quickly realized I definitely had my work cut out for me.

You know that feeling you have when you’re so comfortable, so in sync,  just everything seems perfect? That’s what I felt that weekend was like. Sure, everyone had their disease state families, but I tried to bounce around and meet other people across conditions.

Remember when you were little and your parents told you not to meet anyone online? Well, I wanted to basically go completely against my parents wishes and meet all of these amazing people who I talk to online through twitter handles, facebook groups and blog posts. I wanted to put a REAL LIFE face to a name!

Honestly, I could cry with how awesome this felt. I can’t even describe it. I’m tearing up as I write this.

To be in a room full of people who just “get it” . . . Wow. Excuse my French, but holy f@#$ing shit. Being in that environment makes you feel all the feels. Sure, this group knows we’re not alone, but to be there. In person. Really showing each other we’re not alone. I can’t even find the words to describe that.

I’ve been to many conferences in the past 3+ years, but this one takes the cake. Hands down. No competition.

Not once did I have to ask for something, because Tonic and Janssen had already thought it through.

Not once did I have to worry about food, because they were on it. (I literally got to enjoy a 4 course meal with NO food substitutions…. and that included dessert as well!)

Not once did I have to take myself out of the moment to worry about myself. They made it so easy to focus on networking and learning and connecting and just being able to feel normal.

I hope that Janssen, Everyday Health and Tonic all know that I appreciate this with every bone in my body. This is something that DID NOT go unnoticed and I’ve heard time and time again from patient advocates.

So what are my take aways from the weekend?

1.  Social media connects us all and should win the Noble Peace Prize.

2. Social media is great, but NOTHING beats personal interaction. Nothing. To be able to hug Aaron who totally gets my AVN struggle, to be able to connect with bloggers who are similar to me like Marisa, to have a light bulb moment mid conversation when you finally put a name to a twitter avatar, like Annemarie and Eduardo, and to meet new individuals who you hadn’t had the chance to follow yet, like Aaron, Christy, Jamie, Ben . . . Ok, I’m crying writing this. . . I gotta wrap this up.

3. My family always says they’re so proud of me for what I’m doing, but wow. The amount of pride and inspiration and motivation that weekend gave me. Talk about “recharging your battery”. You couldn’t write the plot of a movie script any better.

Oh anddddd I need to up my gif game because Ben is awesome with them.

 

Trevis Gleason gave a presentation about taking your advocacy offline. During his presentation he asked “why we do what we do?”. I said that I would have never chosen to become sick but, because of it, it’s given me my purpose. And his response was so awesome I wish I had thought of this analogy before . . .

He said, NO. Your diagnosis didn’t do that for you. Your diagnosis gave you a Shaw Shank redemption moment. You used that little hammer to chisel at the cement, until you were able to crawl through the ducts and finally out into the rain. Your diagnosis provided you the opportunity to grow into yourself and to find your purpose.

He hit the nail on the head. That’s what I was trying to say, but hadn’t articulated it well enough. (Maybe that’s why he has a book agent and I don’t?! Haha!!) Also, as he was saying it, I totally was picturing myself in a cell, chiseling at the floow, crawling through some ducts and then finally dancing in the rain.

Everyone in that room had used their diagnosis as a Shaw Shank redemption moment.

Sure, there were points along our journey’s that we felt Ike victims.

Times when we were saddened and overwhelmed and frustrated and every other emotion.

And sure, we still may have days like that.

But these are the leaders of change.

These are the people who every healthcare company in the world should be calling upon.

These are the people who should be recognized as drivers for the future.

These people are the people who your Mom meant when she said “surround yourself with people who will build you up.”

These people are just like me.

These people are my family.

We’ve all overcome (and continue to overcome) adversity and decided to step up and make a change.

These are my people.

This is my chosen family.

I already can’t wait till next year.

Wishing You A Pain Free Day!

 

 

 

 

Disclaimer: Janssen Global Services paid for my travel expenses for this conference. All thoughts and opinions expressed here are my own.

I have to write this for disclaimer purposes, but just know that this post is TRULY TRULY TRULY how I feel and, even with them paying my expenses, I still feel 100% grateful and humbly blessed to have been able to go on this trip.