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.


The Expert of Your Own Experience

Back in May, after spending 2 days in Milwaukee for the 8th annual Arthritis Introspective Conference, I returned home in an immense amount of pain/swelling. After getting just 2 hours of sleep due to pain that night, I got up the next morning and immediately called the on-call rheumatologist at the clinic I had been seen at since November of last year.

From the beginning of our conversation, the physician I was speaking to was belittling, condescending, and rude to me. As I described my symptoms and pain level, he said things such as: "oh, well that's interesting," "I don't know what to tell you," and "there's nothing I can do for you." My personal favorite was: "I'm looking at your chart and there appears to be some confusion about your diagnosis. You're just going to have to wait until you can be seen at Mayo Clinic in July."

After a short diagnosis debate, I shared that I had taken 4 Tramadol in the past 24 hours to no avail. To that, he said,  "I guess I can get you some high dose, short term Prednisone." As he was finally writing the prescription, I asked him to send it to the pharmacy nearest to the place I'm living for the summer versus the one I had entered in the system approximately 30 minutes away (in the town where the clinic is located). His response? "You live in St. Paul, why can't you drive 30 minutes to pick this prescription up?" 

A million questions raced through my mind.

  • Did this physician listen to me when I told him I had been bedridden the past 3 days due to pain?
  • Does this physician realize how much LIFE has been taken away from me because of said pain?
  • Does this physician understand that driving 30 minutes is absolutely out of the question because of the extreme symptoms I am experiencing? 
  • Does this physician recognize that July is TWO months away?

I told him I would take care of transferring the prescription myself and ended the phone call by asking him one simple question: "Doctor, do you suffer from any kind of chronic pain?" He responded, "No, I don't." And with that, I left him with one word: "Exactly." 

About two weeks later, I made another call to the clinic to speak with my (now ex-) rheumatologist. I had been bedridden for another 3 days due to a low grade fever, severe pain/swelling, and awful fatigue. I called to get her suggestions and something get me through until I could see a new rheumatologist in the area + make it to Mayo after months of waiting. After a few hours of waiting for a return phone call, I got her nurse on the line. The nurse said these exact words before proceeding to tell me to have a nice day: "Dr. ******* says she can't do anything to help you."

Now, perhaps this little stunt wouldn't have upset me so much had I not been experiencing level 8 pain or had I not already endured countless rude interactions and useless phone calls with other doctors in that clinic...but this really set me off and aided in reaching a whole new level of hopelessness. Things were looking bleak. These are issues within our healthcare system that need to be addressed.

The most aggravating part of this entire situation is clicking onto the clinic's website and reading their mission statement which states that their number one goal is: "...to provide the highest quality consultative and comprehensive rheumatologic care to patients..."

I'm not Merriam Webster, but I can tell you that those words and the care I've received are not 
synonymous. Let's break them down a bit:
Consultative (adj.): giving advice; having suggestion(s); possessing the power to give advice, but not to make decisions. 
Comprehensive (adj.): including many factors; covering completely or broadly.

None of the phone calls I received in response to multiple cries for help could be described at consultative or comprehensive. This is NOT patient-centered care and it is certainly not care that I will be subjecting myself to any longer. 

My decision to leave this particular clinic (though it was process in itself to find someone new) was my best decision yet. In mid-July, I saw a new rheumatologist in my area who took my entire chart into consideration and further searched for answers even when they were not black and white. In fact, she searched for them ESPECIALLY because they were not black and white. She also caught new signs of joint inflammation and degeneration and started me on a rigorous treatment plan. I went to Mayo Clinic a week later and received similar care and concern.

It's now been about a month since I saw my new rheumatologist. I am slowly adjusting to new medications, therapy sessions, and a more elaborate daily schedule. I am doing well because someone decided to listen. I am preparing to move back on campus in two weeks and because of this new treatment plan, I will likely be able to thrive. At the very least, long days spent bedridden and writhing in pain will not be the "norm." Should I experience a flare like that again (odds are I will at some point -- that's just autoimmune disease), I know that I have a physician who will make it her mission to help me get it under control as soon as possible.

All that to say, I did not write this post to slam the clinic I was formerly seen at (though I would not recommend them to anyone). I wrote this post as a reminder to advocate even if it involves tears, your voice shaking, and having to lay down the law with doctors who think they are superior and all knowing. You are ALWAYS the expert of your own experience(s)...especially when it comes to suffering from chronic pain/illness. You are the one who has to keep holding on when the pain is unrelenting and excruciating. Don't forget that...and please don't forget to use your voice.