#HealtheVoices17 Recap

HealtheVoices 17 was a few weeks ago and I’m still processing it.
It was awesome.
My pal Kenzie and I drove down together. It made the drive even better to have such great company!
It also made it easier to drag all my meds along!
Right as we got to the hotel, I hustled upstairs to meet with my fellow panel members for our stigma panel prep session. From there, I ran up and changed for dinner with the Joint Decisions crew! It was a great night.
My first major order of business the next day was obviously to snag my Do-Rite Donuts!
The first order of business was to meet up and spend time together for breakfast. We heard from Caroline Pavis and Rhonda Waters, two of my favorite people in the entire world.
Rhonda reminded us of how we’re like redwood trees. Did you know these trees have very shallow roots, despite being incredibly tall? The secret to their long-lasting strength is that those shallow roots are all connected.
Just like us.
It’s some powerful stuff.
C/O Daniel Garza
In the afternoon, me and the other cuties up above got together for our panel on stigma. We talked about stigma in the media, from doctors, and even from our fellow patients.
Next up, we heard from Dr. Tiffany Taft on some much-needed self-care stuff.
We talked a lot about how to change the way we talk to ourselves and ways to focus on ourselves – at least some of the time.
I wish we had a whole conference on stigma and self-care alone. It’s so needed.
That evening, we ate delicious food together and heard from Luke Escombe – one of the most hilarious people I’ve ever met. He also started off our open mic night! This was the first year they’ve done this and it was a hit.
Unfortunately, my capstone was due the same weekend as the conference, so I spent a lot of the nights working on my paper instead of spending time with friends.
Saturday was full of multiple sessions. My two favorite were Josh Robbins‘ session on ‘Here’s How to Get Video Done’ and Heather Gabel‘s ‘Creating Credible, Strong Content – How to Interpret and Share Scientific Data with Your Audiences.’
I popped down to do a few interviews.
And then we all went out for dinner at Wildfire – which was delicious!
Sunday went by quickly but was full of coming together to say goodbye.
The biggest news of the day was that Janssen started the HealtheVoices Impact Fund. The $30,000 fund is available for individual patients to accomplish their advocacy goals. Yes, before you ask, I already have some ideas in the works.
Mwahaha.
We talked about how to take care of each other and ourselves better. Josh even made us all sign cards saying we’d do that!
This is part of why I love HealtheVoices – being able to focus on our self-care and the connections we make.
It’s so great to connect with other health activists and spend time with dear friends.
I’m so grateful to Janssen and Johnson & Johnson for hosting this conference as well as the various supporters such as Wisdo and Healthline.
My Top 5 Takeaways:
1. It’s okay to take some time for myself.
2. We’re not alone in our fight – ask for help.
3. It’s easier to do more when we can support each other and feel supported.
4. I need to learn how to create some boundaries cause I don’t have them.
5. When you do health activism, you’re bound to have people who disagree with or hate you… but you’re also bound to have people who admire you and consider you their hero. They’re the ones to listen to.
PS: Janssen is paying my travel expenses for this conference. All thoughts and opinions expressed here or on social media are my own and do not reflect the thoughts or opinions of Janssen or Johnson and Johnson. 

 

Off to Healthevoices 2017

I’m heading to Chicago for the weekend for HealtheVoices 2017!
Chicago is one of my favorite places, so I’m excited to spend some time there with some of my favorite health activists in the entire world. It will also be great to see many of my Joint Decisions friends for the first time since our October summit.
Since I’m at the end of my master’s capstone writing, I may not get a recap up as quickly as I did last year. Still, I’m excited to be able to share things I learn with everyone else via the interwebs.
PS: Janssen is paying my travel expenses for this conference. All thoughts and opinions expressed here or on social media are my own and do not reflect the thoughts or opinions of Janssen or Johnson & Johnson. 
 
And, yes, in case you were wondering, I will be binging on Do-Rite Donuts again.

 

Recapping #Healthevoices16 in gifs

Chicago was SO MUCH FUN.
I cannot even begin to fully unpack everything – mentally, emotionally, and from my actual bags.
I got to hang out with some of my favorite people like Eduardo (RA Guy), Britt (Hurt Blogger), Leslie (Getting Closer to Myself), Kristin (Chronically Kristin), and Mariah (From This Point. Forward).
I also got to meet some of the wonderful people with Janssen that I will have the luck to work with more in the future as a part of Joint Decisions.
If all I did was meet them, the trip would have been worth it.
Thanks, Meme Crunch!
Our opening dinner was amazing. During which, I consumed two glasses of wine, sat next to Britt, and got to hear from the founder of Patients Like Me.
People came up and introduced themselves, excited about Chronic Sex or having been readers of mine for a long time.
HELLO TO YOU MY FRIENDS
On Saturday, I attended an amazing session with Trevis Gleason. Like my great grandmother Katie Mae, Trevis has MS and is a passionate advocate. He shared his journey, including my favorite part of the conference sessions themselves:
“Your illness did not make you better.”
It doesn’t stop there, but the following is a paraphrase: You had a Shawshank Redemption moment where you tore down bricks, made a tunnel, and “crawled through your own shit” to come out on the other side as a transformed person.
Thanks, Tumblr!
As if that alone wasn’t enough, he shared great ideas like working on publishing, inviting others through our apparel or accessories to discuss our illness, and then read to us from his book.
I’m in literary crushville.
The next session I hit up involved the legal aspects of blogging – defamation, trademarks, copyrights, protecting your information, etc – with Jimmy Nguyen.
With websites stealing information from us bloggers being a rampant issue lately, this was a much-needed session.
Many of us came together during the next session to discuss how to encourage a community feeling.
I hope that we will have visits, virtual convos, and tweet chats to help foster this.
.@Kirstie_Schultz shares her excitement at #HealtheVoices16 and how advocates can work together effectively! pic.twitter.com/Mf9NdxBau0

— HealtheVoices (@healthevoices) April 16, 2016

Ironically, I had to go have a rest during the Compassion Fatigue session I was hoping to attend with the amazing Rhonda Waters. The fact that she works often with the Joint Decisions group has me ecstatic, though.
Dinner Saturday night was tons of fun. I was with Britt and Leslie again, Molly (And Then You’re At Jax), some of the most amazing IBD/Crohn’s activists, and others.
You’ll have to forgive me on some of the deets because the amazing Deirdre from Tonic Communications snagged me a pitcher of red sangria… and I was the only one drinking it, save one cup.
Thanks, Giphy!
It was amazing.
KevinMD gave the Sunday keynote to a very… contentious room. He did not really alter his talk from speaking to HCPs to speaking to patient activists and advocates. This meant that he was asking us for help that we cannot give while downplaying the important things we do for free.
I was not thrilled with his talk, and he also didn’t stay very long for people to share more information with him afterward.
That was nothing compared to what happened next – all my new friends started to LEAVE!
Thanks, Mashable!
NOT OKAY, YOU GUYS.
Alas, I had to go home eventually as well.
Thanks, Tumblr!
I ended up getting motion sick and tossing my cilantro on the bus to the airport. The nice thing about that is the amazing patients I was with rubbed my back, got me bags, and took care of me until we hit the airport.
It was super sweet. Not unsurprisingly for those of you who know my background, my sister and my husband are the only ones who have ever really done those kinds of things for me.
That just secured it, though.
Thanks, Movie Pilot!
I CANNOT wait until next year.
No, seriously. Please let’s do things in the interim.
Growing up in an abusive home, a family of choice is something I’ve embraced wholeheartedly… I don’t communicate with my family of origin. Not everyone in my family of choice was at HealtheVoices16, but so many were: my sisters Britt, Kristin, and Leslie; my brother Eduardo; and our momma hens, Becky and Deirdre.
There is much I want to say, but right now I just cannot find the words.
Thanks, Goodreads!
PS: While Janssen paid for my travel to HealtheVoices16, all thoughts and opinions expressed here or on social media are my own… especially regarding how amazing people are.

 

I’m off to #Healthevoices!

This weekend, I get to attend the Healthevoices conference in Chicago! I’m actually leaving tonight after work because I love Chicago.
Not just because I get to snag a ton of gluten free Do-Rite Donuts in the morning then.
Chubbs the Adipose remembers
I am SUPER excited!
PS: While Janssen is paying for my travel expenses for the summit, all thoughts and opinions expressed here or on social media are my own… especially regarding donuts.

 

Healthevoices 2016

Healthevoices 2016 is happening in a month-ish!
I am incredibly excited to be able to attend this year along with several other AMAZING health activists and bloggers.
Look for fun information coming from my Twitter from April 15-17.
And if you’re in Chicago, give me a holler!
PS Janssen is paying for my travel expenses for the summit. All thoughts and opinions expressed here on my super-excitement are my own!