Ups and Downs

I've had some amazing highs and lows over the past few weeks since we spoke last. I was lucky enough to be chosen as an Stanford Medicine X ePatient Honor Scholar. I love that I was described as being "persistently disruptive yet positive advocate." Medicine X was life changing, it rocked me to my core and galvanized my resolve to be a difference maker in the world of healthcare, not just for amputees, but for everyone. I was then asked to take part in a Google Hangout discussing my time at Medicine X and the lessons learned there. You can see the video here MedX Live Hangout

Now some of the lows I've experienced. Many of you know I have had a dream of becoming a flight medic well before my accident, I have wanted to fly. I had the opportunity to interview with a very prestigious flight service, and although my interview went extremely well, I was passed over for another medic who had years of flight experience. I can't blame them for their decision. I know, being a manager once before, I would have made the same decision. I remain unemployed for the Christmas season, and there's the kicker. How do you make sure your kids have a wonderful Christmas, pay your bills, and still have enough for the other little essentials like food and gas...that's where we are now. Kate is working, but without my income to help, I feel like I'm trying to dig a hole in the sand, the deeper I get the more sand pours in from the top. We've been blessed to have our family help us and keep us at least treading water, but I feel like I'm sinking and just want to fix it...I hope to have this solved by the new year. I've always been the eternal optimist and continue to be so; I know things look bleak but that's just today, I will have another opportunity to use my talents, I just have to find the right fit.

I'm still waiting on my socket from Otto Bock...you know the one I was supposed to have months ago so I can stop having these hives break out on my leg everytime I put my prosthetic on...yeah that one...I'm told it has made it to the US, in fact it is in Minnesota at Otto Bock HQ...now they are holding it up in order to build the frame there. My prosthetist has asked that it be sent to his office so he can make the frame himself, which would be done quicker than how they are doing it. I'm just stuck...waiting....I've lost a job, I can only wear this amazing piece of technology a few hours a day before it becomes too painful...I'm just in this holding pattern. So I wait...

While I wait I start to write, I've been trying to take time here and there to jot down this journey that I've been on, in a little deeper detail than I have here, looking back at the experiences that have shaped me into the person I am, and the dreams I have for where I will go from here. To start, I've applied for Stanford Medicine X again this year, only instead of just going as a blogger, I have applied to go as a presenter. Last year the Ignite speeches, from some of the other patients at the conference, were some of the most powerful experiences of my life. I want to be a part of that. I want to get out and speak out about my story and about the Medical Injustice of the Prosthetic Industry...namely the insurance industry. How much would you pay for your leg? Your arm? Your ability to walk, or pick up your child, or just simply stand up...how much is that worth to you? Now, realize that the prosthetic that could change your life, is lumped into the category of "Durable Medical Equipment" a category that also houses bedside commodes and wheelchairs. Then realize that most insurance agencies only pay $2000 for a lifetime or will only pay for one prosthetic per lifetime. I want to change this. I want parity for everyone, not just Kentucky, everyone. This is where I am headed. This is my goal now. I want to remain a paramedic, and I hope I can go fly, but I want it to be my means to an end...the end being a change in how we view amputees as a society and how we let money decide what limb is best.



Do you want to have the Stanford Medicine X experience? Do you have an idea on how to change healthcare? Are you an active participant in your care? If you can answer yes to any of these you should apply for an ePatient Scholarship to attend Stanford Medicine X 2014...but hurry the application deadline is January 10th

Apply to attend Medicine X here...Tell em the Prosthetic Medic Sent Ya!!!

Defeat...Maybe Not

It's been awhile since I've sat down to write. It's not that I haven't been able to, I simply haven't wanted to. I've been, as my wife puts it, "in the bell jar." I few weeks ago I was forced to resign from my job. That left me questioning what I was doing with my life. Where do I go from here? I spent so much time and energy fighting to get back to work as a paramedic, I never stopped to plan for what happens if I have to stop...In a sense, I have been defeated. I'm in a holding pattern, waiting on a socket to make its way from Germany to Kentucky. Due to an allergic reaction I am stuck only wearing my leg for a few hours a day. When I take it off, I'm covered in hives on my stump...needless to say this is a little more than uncomfortable. I'm hoping that the new socket will be here sometime this week and I'll be able to start looking for gainful employment again. I am not meant to sit at home, but that leaves the question...what do I do? I long to be in an ambulance, so I need to find a way to still make runs, but have the time I need to heal when it's necessary. A lofty goal indeed.

Thanks to the generosity of family and friends we've been able to pay our bills for another month. The sudden loss of income couldn't have struck at a worse time. Here we are in the holiday season and we're starting from well behind where we should be. I'm determined that I will do whatever necessary to rise up from this again. I fought my way back to the ambulance, against the odds some might say. So why not apply that same determination to finding a job that allows me to fulfill my goals with my physical realizations.

I want to end tonight by thanking you all. You have all supported me throughout this rollercoaster life over the past year. Kate and I have been wrought with ups and downs throughout all of this. I was given the advice once that "you know you're doing the right thing if every step you take you have to fight for it." Well, we are fighting once again. I promise, I will find whatever lesson there is to be learned from this latest pitfall and come out stronger than I was.

Until then, thank you for your support and if you know of anyone in need of the uneven point of view a one legged medic could bring let me know.

Unemployment and Dante's Inferno

I've been contemplating the beginning of Dante's Inferno quite a lot lately. You see, in the beginning of the Divine Comedy Dante finds him self trudging along life's path to suddenly realize he's lost in a "yellow wood." Lost and alone he comes across a leopard, a lion, and a she-wolf. After all these trials he is rewarded with a guided tour though Hell.

And here I am...I find myself for the first time in a year to be unemployed (more than I can get into at this time). I am Dante, only I faced the beasts to get where I was, and now I find myself lost in a Yellow Wood.

I'm faced with the terrifying aspect of not being a "traditional" paramedic. I haven't allowed myself to entertain this thought since I made the decision to have my amputation. It has sent my entire life into a tailspin. Not only my life, but honestly my family's life as well. I find myself constantly asking myself "now what?" sadly, I can't answer that. I could return to college and try a different degree...but what in. This is all I know. This is what I'm good at; it's where I feel I belong. I ache for the speed and bright lights. I'm at my best when others are at their worst...that doesn't really translate into a 9-5 office setting.

That being said, I have to weigh the option that I may have to move on. I just don't know where or how at this point. I've thought about becoming a prosthetist, making prosthetics for others, but that is a long tedious process. Honestly, I just don't know. I'm not sure...this is a feeling I don't know what to do with. So here I am...lost wondering in dark yellow wood, just waiting for my Virgil to be my guide and show me the way out.

Optimism for Activism

As the high from Medicine X comes crashing down I am left with an unbridled spirit of optimism. An optimism that the lofty goals set out by a few can be accomplished to help the many. Most of us never think about what would happen if we were to come down with a catastrophic illness or suffer through a debilitating injury. The problem is that this happens daily. There are roughly 185,000 new amputations each year in the US, that breaks down to roughly 5 people out of 1000. Go to a any professional sports game, there are roughly 25,000 in the crowd, that equals 25 of those people gaining new amputations for various injuries. The issue we have is that if you're unlucky enough to be one of these 25 people and live in one of the 30 states that does not offer prosthetic fairness then you should be prepared for an uphill battle. I know because I fought this battle. Amazingly, I fought this battle and won. I won because I had the power of social media behind me. For those who are new to my blog a brief synopsis. I was denied my prosthetic by an insurance company who does not cover microprocessor knees. After blogging here about my plight, the readers and my brothers and sisters in public safety took to my fight. Together we fought against the insurance juggernaut and forced a change in rhetoric. I am odd in this...sadly, this is not the normal way these stories pan out. No...the way this story normally ends is that the amputee is given a substandard knee that allows them to "function." A word I have come to hate. Function...to me this word says that it will work, but barely. If you had a car that just functioned then you'd probably look for a better car, one that not only functions but has the bells and whistles you need to enjoy your ride. So, why wouldn't you want that with something as vital as a prosthetic. No functioning doesn't lend itself to living.

If you look at most insurance protocols for prosthetics you would see that they lump them in the same category as bedside commodes and crutches; they call it "durable medical equipment." Most cap the spending on these items at $2,000, sometimes more, sometimes less. If you're lucky your insurance company will cover a prosthetic but limit you to two for a lifetime. If you have a child who happens to suffer an amputation, depending on age, they could need 10 times the approved amount. This is unacceptable.

Now, lets counter this with a state with prosthetic fairness. Your physician writes you a prescription for a prosthetic that matches your activity level. You get that prosthetic. It's as simple as that...well there will be hoops to jump through. You have to prove why this prosthetic will benefit your life. Trust me. It will and it's easy to prove.

I know. It's not free. It will take some input from everyone. In Kentucky, we looked at the financial impact such a bill would have on the taxpayer. In Kentucky, it would equal out to somewhere between 5-8 cents per person. A negligible increase on your premium.

Now, my goal is not only get this passed in my state, but to get this into the national spotlight. This needs to be passed nationally. We need to come together and push. Call your Senator, Call your Representative, Be proactive...and as I learned at Stanford...Stories change things. Patient stories will be the shoulders that carry this bill. Our voices will be heard, our voices can change the world...

Until next time.

PM

Medicine X...A world of Changes sparked by a new idea!-

I've been home for a few days now. Slowly, I'm making my way back into my normal life...but that's the difference. It's not my normal life. Something changed. I discovered a passion, a spark, that I did not know I was capable of. I have called myself an "accidental activist," I quite literally fell into standing up for others in my position. I didn't not plan on taking this path, and I acted as such. I wrote my blog, I spoke out when I could, I did what I could when it was possible to work that into my schedule. In Palo Alto, California I discovered that I need to me much more active. As I wrote before, I was most taken aback by being included in the same company as these titans of advocacy. I still can't believe my name could be brought up in such company.

These were not the only lessons learned. I gained a new respect for "Participatory Medicine." The thought that a patient can be, and should be, the expert of their own care. This education often comes at the patient's own expense. Not only through personal expense, but mental anguish, personal strife, and in the best of cases personal triumph. Triumph was what I heard most while at medicine X. Patients of all socioeconomic backgrounds, encompassing a myriad of chronic illnesses. These people are more than survivors. Surviving lends itself to barely making it through. No, these amazing advocates are truly living, not in spite of their illness, but in conjunction with it. Then I had an epiphany. Amputees ARE chronic patients. When looked at through the traditional sense, a chronic illness is just that. An illness that doesn't go away, often with increasing complications as time goes on and no currently known cure. As an amputee, there is obviously no cure, the only difference is I wear my medicine. My medication is my ability to interact with the world, I display it proudly, a badge of honor that I am not a survivor, but I am living.

I was able to interact and network with some amazing physicians, leaders of industry, and various other caretakers. Hearing of amazing innovations, new viewpoints of the patient/physician interaction, and ways to track your own healthcare data. What I enjoyed most about Medicine X was that the patient was front and center. We held a prominent place at the front of the room, able to directly interact with the various speakers and presentations. Every aspect was to show the importance of the viewpoint of the patient. Increasing awareness of the various chronic illnesses, but not actually focusing on the illness itself. No, for the first time in my medical career, the patient was more than their respective ailment. We were once again people, our ailments only a portion of who we are, fully integrated into our lives, but not dominating it. The way the healthcare experience should be...the way Medicine X convinced me it could be with the right education.

I'll have more later, I'm still digesting the massive amount of information.

Until Next Time...PM

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....