Thanks to all that have helped!!!

Sunday, September 29, 2013

Medicine X...I'm not in Kentucky anymore

As Medicine X draws to a close I’m finally in a place where I can kinda write about what I’ve experienced. This has been one of the most amazing experiences in my life. It’s been informative, fun, overw…helming, emotionally and mentally draining…and so much more that I don’t have the words for.
When I stop to think about what this conference represents, I’m very pleased to report that for the first time in my medical career I’ve met a group of people (read as physicians, administrators, patients, business owners, and various others) that share a vision of healthcare where patients are given all options and physicians work for patients; not the other way around. Yet this was not the most amazing part of the entire conference. Over the next few days I will expand more on the amazing lessons I learned from the speakers and classes I attended here…that’s not what this blog is about right now…no this about the “ePatient” experience.
As I boarded my plane in Louisville, I was excited and nervous…I haven’t flown since I lost my leg and expected an enormous hassle dealing with our lovely TSA agents…Luckily, I was wrong. The transition through security was smooth and easy. Once I made it to North Carolina…the nerves had turned into a feeling of uncertainty and expectation…then a wonderful surprise happened.  In the row behind me sat a mother with a young child, he may have been 3 years old…the mother was upset that she wouldn’t be able to sit with her husband and older child…a bubbly blond sitting next to her husband graciously gave up her seat so they could be reunited…that blond was Emily; otherwise known as the blogger at Chronic Curve…Emily is in her early 20’s and has been fighting an uphill battle with a rare form of rheumatoid arthritis. We had only met once, and that was on a google hangout. Yet, when we saw each other it was like seeing an old friend. She sat behind me on the plane and suddenly that nervous expectation turned again, only this time into anticipated excitement. We didn’t speak much on the plane. It was a long flight and both of us tried to sleep to save our energy for our upcoming adventure.
Once the plane landed, we made plans to meet up with another ePatient. We decided to take advantage of being in San Fran and go on a tour. It was beautiful and very tiring. It was great to see the bridge and all the beautiful scenery, but we quickly realized that 3 people with varying health issues maybe should have rested a bit more before tackling such a large endeavor. We had hiccups in navigating the public transportation system, but all in all it was fun.
Friday and Saturday was mentally and emotionally draining. I’ve met some amazing people who are navigating the minefield of chronic illness, healthcare, and owning their own data…They are the driving force behind Medicine X. This is my initial take away from this conference. Yes, the panels and lectures have been beyond amazing. I have been in a metaphorical downpour of information, it’s been overwhelming at times, and it’s very welcome…yet the patient experience is what I take away.
I walked into Medicine X seeing myself as a healthcare provider/patient; yet while here I had an epiphany…I’m listening to all these amazing people open their hearts about their battle with chronic illness and disease, and realized that I met the definition for a “chronic” patient. I’d never thought of myself this way. Sure, I’m an amputee, but I’m not sick…yet when I paused to reflect I realized that…my leg isn’t growing back. I’m chained to my diagnosis for the rest of my life, this was a punch to the gut…I think over the last few years since my accident I hadn’t taken the time to really adjust my self image. Now I’m faced with looking within to see that yes…for the rest of my life I’m stuck…not just myself, but my family, my wife, my kids, everyone around me has now been enrolled in the chronic caregiver role. Yes, I will have fewer issues than many of my counterparts (and I’m thankful for this), but I was faced with the realization that my condition (and that of the millions of other amputees) directly effects those we love. Here is why I loved this conference…in the middle of this identity crisis, I am surrounded with incredible stories of success. I’m blessed to see how others have that will to live; I purposely did not use the word survive here, survival speaks to barely making it and holding on by a string…no, these empowered patients that surround me truly live.  So if you were to ask me what I gained from Medicine X 2013…the first things that come to mind are that I am more than my diagnosis. I am not just an amputee, but a whole host of labels that I wear with pride. I am a father, a husband, a son, a brother, a paramedic, a joker, I am all these things and more…I just happen to have had an amputation and now a prosthetic. Secondly, and most importantly, I was able to witness firsthand the incredible difference between surviving and living. Living involves integrating your disease process into your life and then leading the life you want instead of the life you have.  I have seen the power of an informed and empowered patient and that a small group of people will change the world…we may just have to take small breaks to rest.

I’ll be back in a few days to recap the educational experiences…
Thank you again to @AfternoonNapper, @Iam_spartacus, @HurtBlogger, @Larrychu, and especially @MedicineX



  1. Ah, Joe! You are so going to make me get all emotional and worked up again.

    What are the odds that we'd meet on the plane the way we did. Damn good thing I recognized that leg of yours! God knows I'd not have made it through San Francisco or that crazy travel mess without you and Laura looking out for me. Quite frankly, I'd have been in the hospital way before Monday without the group taking such amazing care of me. That kindness is not something I'd ever experienced before and I have to say, you and the rest of the epatients taught me a valuable lesson about letting others take care of me. I didn't realize it, but I need to learn that lesson.

    It was a privilege and an honor to get to know you, truly, and it feels like I've known you for 15 years the way we connected this week. I cannot wait for next year. Fingers crossed we are both back in Palo Alto for round two...only this time with a rental car and no CalTrain fires :)

    Signed with a whole lot of love,


  2. Thank you, Joe, for the great post! You've put into words a lot of the feelings I've been having as well. I agree, my biggest takeaway was the patient stories and I feel totally inspired by you all - and some kind of new sense of urgency to make things happen. Hoping to put together my thoughts soon. xo