2016: A Fantastic Year In Review

This year has been an interesting year.

I’ve had some really high highs, and then I’ve had some struggles along the way. But, when you really put it all into perspective, this year was fantastic.

I became a God Mother, I experimented with raw vegan, I spent quality time with family, saw the Pens win the Stanley Cup, celebrated 1 year post Regenexx and had a PRP treatment on my knee, went zip lining for the first time and made so many amazing memories.

At the end of last year, I wrote a post about my emotions and how I was feeling as 2015 came to an end. {Click here to read it!} Per my post, I was: scared, nervous, excited and freaking out. Which, sounds about right.

2015 had been a GREAT year, full of HUGE successes – like getting off of crutches and all pain meds.

And I was scared. I can’t lie and say I wasn’t nervous about what my new-found successes would bring me. People think it’s crazy to be afraid of successes. But, your nerves can act up a lot- even when you’re excited and unsure of how things will go in a positive light.

The biggest change I knew 2016 would bring me was getting back to work. And boy did this year deliver. Not even just on the working front, but it brought me some really awesome opportunities that I would NEVER have had otherwise.

2016 got me back to living my new normal.

I have to pace myself, I have to make modifications, I don’t have a day off from my chronic condition. But that doesn’t matter. In the long run, I can still have a kick-ass, wonderful life!

Even though I have a new normal, I started to fall into old Julie patterns. (Which, was something I was DEFINITELY afraid of at the end of 2015)

In true Julie fashion, I started to overload my plate.

For 3.5 years, I spent the majority of my time focused on ME. Sure, I was definitely the busiest person you’d meet on disability, but I ALWAYS made my health a priority. 2016 started off the same way. I focused on my health and didn’t make sacrifices. But then the opportunities kept coming. And coming. And coming. And coming. (I feel like I shouldn’t even be allowed to complain about that!!)

And, of course, I kept saying yes and yes and yes. I soon found myself in the exact same position I had been in prior to disability. Overwhelmed and trying to do everything.

It was very frustrating to me because as soon as I had the opportunity to implement all the tools I had be picking up the last few years, I reverted back into old patterns. Just goes to show, it’s a constant battle. You always have to choose putting yourself and health first – no matter what.

This fall was the busiest I’ve ever been, hands down. From Labor Day until the second week of January 2017 I’ve had something going on. It’s been nuts! I wish I could be a bear and hibernate for January and February!

I think the biggest challenges I faced in 2016 were

1. My Hands
2. My inability to say NO

Which, if you think about it, I’m SURE overloading myself and trying to take on the world aided #1.

But, in the end, I’m eternally grateful for 2016. For all of the amazing opportunities, all of the successes, all of the wins and all of the challenges. I did a hell of a lot of things this year that I would have NEVER had the opportunity to do had I not been on disability the last few years.

Facebook reminded me the other day of this post.

It made me think back to that day. Although I don’t remember that day specifically, I remember that time period.

I was in so much pain and so inflamed. No one had any idea what was going on with me. And really I had no idea what lay ahead of me.

But now, a few years later, and a little bit wiser (I’d like to think), I can see that it was all for naught. I learned very valuable lessons the last few years and I really do feel blessed and honored.

There always is the plan. There always is. And where did that plan take me in 2016?

Here are some of the highlights of 2016:

Speaking Engagements

ePharma Summit 2016

I kicked off 2016 by speaking at the ePharma Summit with a distinguished panel of Patient Leaders. Casey Quinlan,  Randi Oster, myself and Jack Barrette spoke to 600 of our closest pharma marketing friends about what patients really think when it comes to pharma ads on TV. My friend Tiffany put together these 2 great storifies – Check them out: Part 1 & Part 2.

 

Farm To Table

Focusing in on the fact that food is medicine, I gave an Elimination Diet presentation at the Pittsburgh Farm To Table 2016. An Elimination Diet is extremely important for helping heal your body and can help you identify triggers which are exacerbating your symptoms! Learn more about my Elimination Diet eCourse here.

 

FDA

I had the chance to attend an FDA hearing on stem cells this year. Here’s a write-up of my whole experience and a video of my testimony. It was pretty cool to be in a room with top thought leaders in the stem cell space. It also made me realize that there was a lot I did not know about stem cells. But, I am an expert in my story, and that’s why I was there. To convey my personal stem cell experience.

 

Stanford Medicine X

Having the chance to speak at Stanford Medicine X was pretty surreal. I had attended the conference in 2014, but in 2015 had not been selected as an epatient scholar. This year, I refused to miss it again and submitted two different speaker abstracts To my surprise, both speaker abstracts were accepted! Not only did I get to go to the conference this year, but I gave 2 different talks!

I gave an oral ignite talk on how social media and patient advocates online helped me regrow my femur bone. Eventually, the video should be up online. As soon as it is, I’ll be sure to post it!

And the second presentation was a breakout session on how I used my own data to create a personalized medicine treatment plan for my psoriatic arthritis. It was amazing to not only present what I had done, but to then have top doctors, leaders and scientists ask ME questions. What should they tell their patients? What did I think about X, Y & Z. It was pretty freaking awesome, to be honest. Definitely in the top 10 moments of my life.

 

Fearless Warrior Yoga Conference

Having the honor to present at the Fearless Warrior Yoga Conference helped round out my year by allowing me to talk about another passion of mine! During my talk, we did a meditation and talked about tools to help you identify what is holding you back. It was the first time I was in front of an audience in yoga pants instead of being dressed up. It was great!

 

NYC Medicine X Pop-up

As if the two speaking opportunities at Stanford MedX weren’t enough this year, I had the honor of being asked to give my ignite speech again at a pop-up event in NYC. I gave the same talk I did at Stanford (about social media and regrowing my femur bone), but this time to a completely different audience in an awesome space at Parson’s School Of Design.

 

Events

FDA – Psoriasis

I had the opportunity to attend an FDA meeting, with the National Psoriasis Foundation, focused on psoriasis. The FDA hosts patient focused meetings and have been having such success with them. Click here to read a little bit more about it and to hear my public comment.

 

HealtheVoices

This year I was able to attend the Health eVoices conference and had an amazing time. The previous year, I had been unable to make it as my friend Amy had gotten married that weekend. All my friends raved about the event and I knew I had to get my butt there this year. Click here to read my post all about it.

And, I’m very excited to announce, that I am on the advisory board for 2017 Health eVoices. Make sure to keep your eyes out for applications which should be available in the new year!

 

ACR

This year I helped with the International Foundation of Autoimmune Arthritis ACT program. A Community Team (ACT): Redefining Research is a 2015 Celgene Innovation Impact Award: Unleashing the Patient Voice in Research WINNING project was designed to address the need to incorporate the patient voice in early drug development discussions so that better outcomes could be reached.  The ‘team’ has three key players:  Patients, Researchers, and Industry (companies who manufacture treatments). This project aims to expand communications between the players so that we can help streamline research processes, improve outcomes, and make better use of research dollars. I had the opportunity to be a moderator during the online research groups and then I was able to represent the patient voice at the American College of Rheumatology conference this year. At the ACR, we interviewed researchers on Facebook Live. It was so much fun! Learn more about the project here and watch the facebook live videos here!

 

Pharma Events

I had several opportunities this year to work with different pharma companies. From sitting on virtual ad boards, to participating in interviews, to flying up to NYC to participate in World Psoriasis Day. Each of them were sponsored by different companies but aimed to help patients as their end goal. Many do not like working with pharma, but I do encounter amazing individuals working at these companies. They really are trying to help make a difference – whether most patients believe it or not!

 

Work

This year I started back to work after having been on disability for three and a half years. I first started working for HealthCentral – writing psoriatic arthritis posts each month and managing co-managing their Psoriasis HealthCentral Facebook page.

I graduated with my 200-hour yoga teacher training certification in November 2015 and had been teaching community classes around the area. But, this year I picked up teaching yoga twice a week at Cool Springs in Bethel Park, PA.

Shortly after, I started working with Rehabilitation And Pain Specialists, to help promote more patient testimonials and to get their social media sites up and running. They conduct Regenexx procedures, the same as I had done for my knee!

The last few years I’ve become obsessed with the idea of raising the patient voice and making a different in the healthcare landscape. So I was MORE THAN EXCITED to start working at WEGO Health. I feel like it takes all of the skills that I have acquired over my life thus far and allows me to put them into play. AND I get to work with the most amazing and inspiring patient leaders that there are out there. I’m very excited and humbled every day to work with them!

During the year I’ve participated on many Advisory Panels, written for other publications and have signed up to be the 5th blogger on LEO Pharma’s PsoStrong. And don’t forget my blog! Sure, this year has seen fewer blog posts than the previous 3 years (I blame my hands!), but I still was able to accomplish a lot. Like my 5 part series on managing my psoriatic arthritis (click here to start at part 1), to the release of my Elimination Diet eCourse last January and my Chronically Grateful ebook in the spring.

 

I feel extremely blessed and am incredibly grateful for the last year.

I can’t wait to see where 2017 takes me – onwards and upwards from here!!!

Where has your journey taken you this year? Make sure to comment below!

 

Wishing You A Pain Free Day!