In 2013, I vaguely remember hearing that Britt ‘Hurt Blogger‘ Johnson had gotten involved in this weird thing called MedX.
I didn’t really know what it was, but as time went by, I learned more and more about it, including that there were some awesome people attending with great ideas towards changing the future of healthcare.
In 2014, I wound up with a flare the weekend MedX happened, allowing me to basically fully participate in the online portions of the conference. I had already taken a MOOC via Stanford on patient engagement and was excited to catch any part of the conference I could. Thanks to my flare, I was able to watch some of my favorite people and friends give amazing talks about their experiences with illness and issues that need to be resolved.
As I watched the live stream and participated in the twitter feed, I was able to really see the goal of MedX firsthand – to bring all stakeholders in healthcare together to make changes for the better. I was able to see the passion that everyone had for these changes, and it helped to reignite my spark which had been lost in the day-to-day health issues.
See, in 2012, my close friend Laura of Still’s Life passed away due to our shared disease. I also had recently had to change jobs and stop graduate school due to my illnesses. I had become engaged and so I threw everything positive I had into wedding planning to ignore my depression.
It wasn’t the best idea but my wedding in August of 2014 turned out awesome, so all’s well that ends well!
With the wedding out of the way and all this extra time on my hands, watching the live stream was exactly what I needed. It threw me head first back into the advocacy world with more excitement and ambitions for the future than before.
I decided to apply to attend MedX in person – and I got selected! I got the news over Thanksgiving weekend – and on the same day I heard about my new job – all while spending my first holiday with my father’s family.
It was intense.
This point in a NASA countdown explains my life right now:
Just prior to this moment, if everything is functioning as it should, the command will be given to start the space shuttle’s main engines. Beginning at the T-minus 6 second mark, each of the three main engines will be ignited and roar to life.
When I was selected to go, I ramped up everything I was doing in my life to focus on one goal – changing the future of healthcare. I attended other conferences this year, started a new administration job in pediatrics, and will start school shortly to work towards my MS in health care administration with a goal of being a patient advocate due to my focus on advocacy and navigation in the health care system.
And I have my new CreakyJoints blog on sex and relationships.
I’m really getting around, pun intended.
I was a little nervous about going to MedX. I’ve worked really hard in the last seven years on advocacy and awareness, but am I ready for this? I mean, getting to meet a ton of people I look up to all at once could be a little overwhelming. Luckily, I was able to meeting Britt and Kenzie at the Arthritis Introspective National Gathering in May. And then I was able to head to the JA conference in July. I didn’t meet any MedXers there, but I learned a little more about myself as far as why I keep fighting.
I physically have everything I need for MedX now – a better carry-on bag, all sorts of braces and wraps, and some nicer clothes so I look professional. My flight is booked, with some time set aside to spend with my sister. I’m ready for some comfy weather and that Cali sun.
Mentally I’m still not sure I’m prepared.
At five weeks out, I’ve started to look at my schedule which is tricky. What in the world am I going to do about all these amazing sessions?
I have a time turner on my keys, but I’m sadly unsure that it’ll work.
A while back I was questioning the validity of having me attend this conference. How in the world am I possibly qualified? Am I enough of a patient? Am I well enough to attend?
Seeing all the steps I’ve taken in the last two years to improve not only my life but the lives of others, I think that feeling has dissipated… especially since my new biologic has killed my brain fog. I feel like I have my life together, and that’s awesome.
What am I most looking forward to at MedX? It’s hard to put into words.
I’m ready to bring back information for the doctors I work with, just as the head of our department is excited to hear about it. They could use some of the information for sure.
I’m excited to bring back information to my new rheumatologist, who is beyond stoked that I’m going. She’s super into patient engagement and shared-decision making, and I love her.
I’m happy I can reconnect with people I’ve met in person like Britt and Kenzie, and to meet others I’ve interacted with before but not yet met.
I’m ready to sit and learn and share information non-stop for days. If I could do this type of thing all day every day, I would.
I think that most of all, though, I’m ready to be with my people, my tribe. As a rare disease patient who didn’t receive medical care growing up despite several illnesses, I have a unique perspective on things. My combination of physical and mental issues don’t always make things easy. I think, though, that MedX will provide me another ‘home’ – just like the one I’ve found with AI. To me, they’re almost two sides of the same coin. AI focuses on living the best life we can right now and MedX focuses on changing things to make that easier and better.
I’m ready to sit in a room with other patients and be treated like my opinion matters, like I am an expert on a part of health care. The acknowledgment that patients matter to health care and that our input matters? It’s an amazing thing.
I’m excited to go be a part of it.
The solid rocket boosters will be ignited, and the bolts that have secured the shuttle to the ground in the last six seconds of the countdown are explosively released, allowing the orbiter to rocket into the sky. Once this happens, we have liftoff!
Well, in late September at least 🙂
I hope that you’ll join me on my MedX journey! I’ll be live tweeting the whole time so hit me up @kirstie_schultz, catch the live streams, and join in the conversations using the tag #MedX.
This is really neat! I will be following it! Also, you will make it through your masters and have an amazing career. I was less disabled in school then I am now, and I have been working in mental health for almost a decade now at the masters level.
I have 3 conditions that cause vertigo and still do a job that involves a lot of driving. The right supports, the right motivations, and a lot of hope can keep us going.
Thanks 🙂 I've been really lucky in that I recently started a medicine that feels like a miracle to me, so hopefully it's just the start of me kicking Arthur ass!