10.28.2015

The MedX Experience

Back in December of 2014, I wrote a post sharing that I would be traveling to Stanford University in California as an ePatient scholar + advocate in September of this year. I titled that work "Embrace What's Difficult" and was preparing to undergo hip and ankle surgery at that time. While writing that post, I experienced a broad range of emotions. I was excited, nervous, and flattered. Mostly, though, it just felt so incredibly surreal. 

I spent many nights lying awake in bed wondering how on earth I got connected to an online patient community that has changed my life in such a radical way. I wondered how on earth it was possible to have formed such deep, lasting, and God-honoring friendships with individuals online -- many of whom I have never, ever met in real life! I wondered a lot, but no amount of wondering in the world could have prepared me for the MedX experience.

I flew out WAY too early in the morning on Wednesday, September 23rd. Two of my dearly supportive roommates woke up and drove me to the airport (I know, I live with SAINTS). I had the nervous jitters and it meant so much to me that they wanted to be the ones to send me off. I love them something big.

I had a layover in Chicago before flying to San Francisco. I prayed for my pain levels to be manageable during travel despite how awful I'd been feeling the past week, but my body chose the latter. I ended up lugging my carry on + purse through the airport with my right shoulder in a sling. Thankfully, each of the airport workers I encountered were incredibly helpful. Other passengers even offered to put my bags into the overhead bins! 

There was a wheelchair waiting for me in Chicago + San Francisco and the flight attendants were helpful for the most part. It was a positive experience "getting there" for sure. :) During my layover, I even started rereading one of my favorite books by Kay Redfield Jamison with a latte in hand. Bliss, I tell you. Pure bliss after adjusting back to the grind of college and needing a serious break with some leisurely reading.


Kirsten picked me up from the airport when I got in. We had officially met at another health conference in May and it was fantastic to see her again as we've been long time internet pals! We had a lot more time to talk with one another and share biofreeze than we did the last time. :) I really don't have words to express how wonderful Kirsten is and how much of a warrior she proves to be DAILY. Her honesty and willingness to be vulnerable about all aspects of her story has changed the healthcare community -- I am sure of it.

I met my hilarious roommate Danielle later that night after I worked on homework for a bit and ordered pizza (all while collapsed on my bed, mind you). I knew Thursday would be a busy day and I had been up and active enough all day to use up every last spoon and then a few more. Flaring and flying...do not try this at home, kids!

On Thursday, we headed over to Stanford's campus to get to work! I took part in a workshop on behavior change which focused on connecting patients and providers. I got to share quite a few of the ideas I've formed based on personal experience. The most amazing part? I got to connect with healthcare professionals who acknowledged them. It was a long day and by the end of it, my body had exhausted every ounce of energy...but pushing through was absolutely worth it.  

Below is the most empowering photo I have ever seen of myself. And, of course, California in all of its beauty (!!!). Complete with a selfie with Kirsten...we were stoked about our registration packets and name tags!


Thursday night was the opening ePatient dinner. I got to meet Leslie in person after following her online for many years. Kirsten and I got to bond more and I also got to meet fellow Minnesotan Britta as well as some other new friends! Ally, too, was a pleasure to meet in person and I couldn't wait to have my dear Britt introduce me to Marvin whom I've had a huge friend crush on since like...ever.

Truth be told: I was too chicken to introduce myself that night, but had Britt introduce us Friday morning. ;) It was at this point that I began to kick myself repeatedly because we could've had approximately 12 more hours together in person had I just gotten the courage to, you know, TALK TO HIM. Marvin is a fellow cervical dystonia warrior and he is a complete gem. We spent majority of the remaining conference together and had some incredible conversations. It's friendships like these that remind me how absolutely wonderful it is to have found a community that truly "gets it."

I also got to meet Liz for the first time. Oh. My. Goodness. This girl is my HERO. She had brain surgery just days before flying out to SFO for MedX and she had nothing but positivity to offer everyone there. Incredible. Absolutely incredible.


The patient talks on Friday were absolutely fantastic. I was moved to tears, empowered in a whole new way, and encouraged to share my story in numerous ways. This year, it may have been through live-tweeting...but I am praying that next year, it will be through an Ignite talk of my own.

On Friday night, I had the opportunity to grab dinner with a long time friend from Instagram. Gayle and I are kindred spirits and she has blessed me immeasurably with her friendship and thoughtfulness. There were no awkward silences -- no lulls in the conversation -- it was like we'd known each other for years (well, we sort of have)! I am convinced that we could have sat there all night chatting if it weren't for the fact that we both share the same disease and an incredibly limited amount of energy due to said disease. ;)


Saturday was a BIG day. Danielle, Kirsten, and I got the opportunity to talk a little bit about how the online health community has empowered us and given us the strength to share our own stories. It was wonderful to hear from two advocates that I look up to so much. These women and their compassion = absolutely REMARKABLE. I am honored to call them friends. 


As I said, Friday was big! We got our professional headshots taken, there was a sunset get together of sorts on the lawn following sessions, and I got to meet my long lost #EndoSister Abby. I was diagnosed with endometriosis in August and have struggled to find other women who understand the pain. Abby vivaciously faces hers with a wicked sense of humor and reminded me why sticking around is always, always worth it. Answers come if you fight for them -- and while that is such a negative aspect in our healthcare system today, it is also an incredibly empowering one. MedX reminded me that we have the ability to change things.

Friday night, Cat came to visit Britt and I at our hotel. I've chatted with Cat on Twitter for years -- we've compared symptoms, griped about chronic pain, and supported one another through multiple procedures. It was LOVELY to finally put an actual voice to her words and sweet demeanor. We chatted biologics for a good, long while and thoroughly enjoyed each other's company.


It's likely no surprise that this girl gets her own collage of photos within this post. My MedX experience (and life experience in general) would simply not be the same without her. Britt has played an absolutely essential and instrumental role in my life. We "met" on Twitter 5ish years ago...at which time I was undiagnosed and dealing with extreme clinical depression. Through the online community, we became close friends and eventually began texting. We met at the juvenile arthritis conference 2 summers ago and have gotten to reunite at a few other health-related conferences since. I've adopted her as my big rheum sis and she's adopted me as her little. :) The craziest part is that people get us confused for one another from time to time...we're not actually sisters, but we might as well be!

Britt shared her #ChronicLife experiment in a breakout workshop and empowered patients with her words in a meaningful and timeless way as she always does. Her talk left me in a puddle of tears and I was reminded, yet again, just how much this community means to me.


Before we knew it, Sunday rolled around. Final breakout sessions began, I started figuring out just how I was going to get back to the airport, and the emotional goodbyes began. Matt and I had a priceless and incredibly memorable conversation about faith and how we're hoping to integrate our own experience(s) as patients into our careers one day. Marvin and I took another good round of selfies, gave one another 17 billion hugs, and teared up one too many times.

And just like that...I found myself waving goodbye to Stanford's beautiful campus and each new and wonderful connection I made during my time there. I was filled to the brim with creative energy, excitement, and empowerment, but my physical body needed R.E.S.T. I had been "pushing through" all week and using my narcotic pain medication(s) almost daily. Was it worth it? Yes. Absolutely. Did it hurt like hell? You betcha. Is it possible to constantly live that way with chronic illness? Not a chance.

Unfortunately, I had an awful experience traveling home. The San Francisco airport denied me a wheelchair on multiple occasions and several airport employees deemed it appropriate to belittle my "so-called disabled state." Because my leggings were covering up my swollen knees, my jacket hung over my aching shoulders, and the swelling of my spine was not visible,  I was deemed "healthy" and my disability was questioned when I asked for help. By the time I boarded my flight (with just minutes to spare until take off) I busted into tears and took the maximum dose of my pain medication. I slept most of the way home, but was entirely miserable. I really don't want to travel again for a long, long time. 

*** The San Francisco airport ended up directing me to the report center and assisted me in getting my experience/concerns heard. The situation has since been addressed accordingly.


And there it is. MedX in pictures. MedX in jumbled words. There is so much I want to say...so many people I want to hug...but because I can't tangibly do all of those things from where I sit typing this post in St. Paul, MN...I will try my best to keep it short and simple by saying: THANK YOU. To all who have shared this journey with me. To all who have made me feel at home a thousand miles away. To all who "get it." To all who don't "get it" but desperately want to. THANK YOU. Thank you for encouraging me to continue on in my personal fight.


Even what the enemy means for evil, God can use for our good and His glory. There is not a single doubt in my mind that God has ordained the experiences and connections I've had and formed up to this point because of my chronic diagnoses. These diagnoses have blessed me much, much more than they have cursed and that is absolutely because of the people surrounding me.

Thank you, MedX. You were absolutely sensational.