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

PM

The Last Call...

Today was rough, but not because of the usual reasons. No...today was rough because it was one of those days that every public servant dreads...Today we laid one of our own to rest. Paramedic Christopher Pickerell passed away on September 7th. It was a beautiful service. An honor fitting of the man. I think Chris' best friend said it best..."Chris wasn't perfect, but Chris was real." That statement stuck with me...the same thing could be said for any number of us, yet when applied to Paramedic Pickerell, it was beyond fitting. Chris was real...sometimes to a fault. At times it seemed that he lacked that filter that most of us learn as we mature. He was a sometimes whimsical mix of adult and kid...sometimes that kid would speak before the adult could censor the outcome. This was Chris...and this is why many of us were honored to call him our friend.

The memorial service ended, as most public safety funerals do, with "The Last Call." Since I know many of my readers aren't public safety workers I will explain. In this line of work, your radio is your lifeline. No matter what is going on you answer the radio, it's ingrained in all of us to the point that to not answer the radio is borderline painful. During the last call the dispatcher attempts to contact the fallen responder a few times...each time met by silence. After the last attempt a brief synopsis of the person's career is given followed by some variation of "we will now hold you out of service for the remainder, your shift is over, we have coverage from here, rest in peace and god bless." Simply typing these words puts chills up my back. This is the end most of us know is on the horizon but fear and pray our family (both biological and throughout the extended brotherhood of public safety) never have to hear. It's a beautiful sentiment and a grim reminder of the mortality each of us face. Today we laid to rest another amazing person...not just a paramedic, but a husband, father, son, friend, brother...etc...this list could continue on.


So for tonight this is all I have to say...be sure to tell those around you how you feel. Tell them you love them, hold them close, always say what you mean (Chris never had a problem with this one), and most importantly live life.

Goodbye to Paramedic Pickerell...You served your region with pride, rest easy brother. You're 10-7 for the remainder...we will cover the rest from here. God bless and God Speed....

Everyday Superman

Who was your favorite superhero growing up? Was it Spiderman? Batman? Who...what drew you to liking that particular hero? Was it their cool nonchalant ability to mitigate any situation no matter how impossible it seemed? I was always drawn to Superman. Not for the obvious reasons...although what boy didn't want to fly or have x-ray vision...no I liked that Superman was his alterego. With all the other superheros they became avengers as a change from their normal selves. Not Superman. No, his alterego was Clark Kent. That's how he saw the human race...it's a poingent moment when you realize that. I have heard this compairison made before, so I cannot take credit for thinking this up...although as a child I remeber liking this about Superman. He pulled back his ability to seem less than he really was. He made himself look weak and unassuming because that's how he saw the world.

I'm sure you're wondering what that diatribe was about...well, it's a great social commentary. We all have the ability to be more than we are on the outside. To many people, I'm sure you already are. Being in the healthcare field is an excellent chance to see the human race at it's best and worst. I've seen superhuman boughts of strength from the most unassuming places; not always physical strength either, no I'm speaking of emotional toughness here. We've all heard the stories of a distraught  mother who lifted a car off of their child, but what you rarely hear about is the emotional strength of the family members involved in chronic healthcare issues. These are the real superheros. These are the amazing stories that never make the front page. From my own personal life, the incredible strength of my wife and family amazes me. They have supported me through my time in the hospital until now. Supporting my advocacy and various causes that I have championed since my amputation.

So this post is a huge thank you to all those supermen and women out there. The unsung heroes that are behind the scenes. All of us, have the ability to step up...it's just being willing to step outside the box and have these amazing people in your corner.

4 Amazing Adovocates...

Just completed my first "Google Hangout" with the other members of the Patient NeXt panel  discussion slated for Friday at Medicine X. It's going to be amazing. I have the pleasure of speaking with an incredible group of people. It's amazing how despite varying medical issues, some topics are global. I look forward to updating everyone from the floor at MedX and can't wait to meet these amazing people at Stanford.

Please check out the blogs of the other panel members, each of them are amazing patient advocates:

http://66roses.blogspot.com/

http://chroniccurve.tumblr.com

http://womenwcancer.blogspot.com

http://tobesugarfree.com


It's an honor to be listed amongst these 4 amazing people. Please check out their blogs and show them some support.

I'm working on another post for later tonight or tomorrow...till then.

PM

She's still here...

An open letter to my wife:

If you look in the dictionary under difficult you will find my picture, well, you should find my picture. I'm not an easy person to live with, I'm always reaching out, trying to help, stretching myself thin...which in turn stretches my family thin. I try to balance being a husband,a dad, a paramedic, a supervisor, an amputee activist, a friend, a son, a brother...etc. As you can see the list goes on and on. No matter how hard I try something on this list is going to suffer neglect as I try to keep all the titles in the air,and from time to time I drop the ball. This is where the amazing part comes in...she's always there. Always. 

On May 8th, 2011, as I lay in Room 9 at University Hospital I begged her to leave me. It's one of the few memories I have from being in the trauma room. I begged for her until she was there, then I begged her to move on with her life without me. She deserved better...but she was there, as always. When I had my leg amputated, once again I tried to convince her she deserved better than me, she didn't need to spend her time taking care of me...she told me to shut up...and she was still there. 

When our son was born,well a few days after, when I realized how difficult it was going to be to care for an infant on one leg, realized that the night time care would fall to her...she didn't run...no she's still here. 

That brings us to today. I've got several fires burning. I'm trying to balance all these things and keep up appearances, and when I feel like I'm failing. She's here. I haven't given her the credit she deserves. Yes, I have a lot of people in my life that have stood by me, my family and friends have been here as well. Yet, in those quiet moments, when I'm having an off day and hate everything that I've been through, hate my prosthetic and the circumstance that has led me to this existence...I can always count on her to remind me that against all odds...I'm still here, and so is she. 

As I prepare to continue on this journey, I felt I needed to take a moment to peek behind the curtain and say with all certainty...behind all my successes there is an even more amazing and successful woman that I am blessed enough to get to call my wife. 

PM  

Working Locally Thinking Nationally

First off...here's the link to the news story from yesterday, for those of you outside of the Louisville area.
WDRB Fox 41 News Story

It's been an interesting past 24 hours. In the time since the story aired, I've had several donations to the Stanford Trip Fund, but more importantly I've been contacted by several people stating that they will be keeping an eye on this trip and look forward to my report when I get back. I'm hoping that I can take the many lessons learned from Medicine X and apply them at both the local and national level.

For the last year, we have been looking at getting the prosthetic parity laws passed at a state level, and while this would be great for the thousands of amputees here in Kentucky, it does very little for amputees nationally...the solution; band together as a group. GO NATIONAL!!! There are several groups that are looking into pushing this prosthetic parity (fairness) law on a congressional stage. With the looming Obamacare changes (like them or not, I won't go into that now), it seems very likely that an addendum could be added into the language, or a whole new law all together.

Ah well...that's a fight for another day...but will be fought none the less.


Until next time...If you have the ability please consider donating to the airfare fund above. Every little bit helps


PM

New Interview on Fox 41

For my readers in the Louisville area, tune into Fox 41 (WDRB) tonight at 10 PM to watch my new interview. I'll be speaking about my upcoming trip to Stanford for the Medicine X conference, Kentucky's Prosthetic Parity (Prosthetic Fairness Bill), and the future of Prosthetics in America. Tamara Evans was nice enough to come out to the house and interview me for my speaking engagement at Medicine X and the Patient NeXt movement. I'll be posting a link for those outside the viewing area as soon as possible.

I'm also including a link to a fundraiser to raise the funds for the trip (Airfare etc...) Please consider donating if you have the ability. The Prosthetic Medic is going to Stanford!!!!!