Dad would be the first to admit he could have been a better father, coworker, human. He was incredibility hard on himself and expected others to be just as hard on themselves which is where I get this characteristic from. For dad, perfection wasn’t an ideal it was the minimal standard of acceptance. That said, dad knew that he had a great life and that my brother and I turned out ok. In the end, there is no life without living—so go live while you still can.

Your story doesn’t need to be tidy. It doesn’t need to follow a structure. It does need to be told over and over in your voice, in different ways, with different tools and styles.

At the heart of healthcare isn’t just data or protocol. It’s us. Without our stories there would be no life to medicine. The more honest, messy, and fully lived our stories are, the more human the system becomes. Afterall, its somewhere in the complexity of life that our lived patient story and our medical team’s knowledge combine to add a greater quality of life to our ongoing patient story.

So, here’s the big picture: treatment is part of the definition of being a patient. It matters. And telling our full stories—the good, the bad, the gnarly—is how we make medicine more human. And in a world where impersonal artificial intelligence is rapidly becoming as common as a band aid, we need to continue to do all we can to keep the humanity in medicine.

Simply put, exercise works. Not only does it make us look better naked which gives us the confidence for selfies (like I said if you are into that kink ), it helps with disease management while at the same time providing some measure of pain relief. Like with any everything else in medicine, there is some risk or potential for side effects, but they are usually easy to manage. Movement is medicine, this is a fact.

Balance is a verb, somedays I’m going to fall and even fall hard because of my chronic pain levels. There is no way to avoid this aspect of chronic pain, so the best I can do is prepare.

Pain shares many similarities with hunger. For example, hunger is both an acute and chronic condition, just like pain. In this analogy, opioids are like eating three meals a day. Steroid injections, trigger point injections, and radiofrequency ablations are like eating out at a fancy restaurant or at grandma’s house. Even working out, going to the gym, hiking, spending time with family and friends, reading, or creating art fits into this analogy. These activities are akin to physical or occupational therapy, cognitive behavioral therapy, or any other mental health counseling related to pain.

Much like everyone else, healthcare is also caught up in the excitement and buzz surrounding AI. Depending on the news article or some venture capitalist's profit fever, AI is going to reduce the cost of healthcare to mere pennies while increasing profits to a billion zillion dollars, save billions of trees by making the need to fill out 2,363 forms before a doctor’s visit obsolete, and with a little luck, finally make healthcare realize that the fax machine can finally be retired. I know, that last one might be reaching for the stars, but a boy can dream, right?

In the case of dad at that point in his life, which included both his physical and mental health, his definition of a quality life was simple. It was about enjoying a great steak with a bottle of good wine; it was sitting on his porch experiencing every aspect of a good thunderstorm, it was giving treats and providing a place to sleep for a friendly cat someone had left in his neighborhood or watching an amazing sunset. Most importantly, for dad a quality life meant remembering the names of his kids, talking to them about their lives and providing advice whenever he could, helping his oldest (me) every time he fell off something even though said son was technically an adult, or being a friend to his long-time friends. It was not being confused by an elevator, it was not being lost in a town he had been living in for decades, or not recognizing anything about his own house. For dad, that was not living a quality life, it was being akin to being a zombie or undead. Pure ridiculousness.

Human caused problems are caused by the conflict that arises when our better angels try to party with our political beliefs. When both drink a beer together, we can get cures for cystic fibrosis or even cancer. However, when one wants to drink water while the other is looking for a vodka tonic, we get trouble. In this case, we get opioid policy prescriptions that are not conducive to the chronic pain, or any type of pain for that matter, experience. To put it another way, my quality of life suffers so others can fill comfortable with their vodka tonics.

This story began last week after I noticed an increase in pain, numbness, and some other symptoms following my most recent radio frequency ablation. After trying to be a tough guy for more than a week, I called my doctor on Friday morning and scheduled an appointment for Monday at 8:30 a.m. Here is the kicker which might be controversial. Not only do I not regret having the ablation procedure, but I also don’t consider it a failure just because I'm experiencing more pain.

Here is my current situation. My pain management doctor has recommended another radiofrequency ablation, which I’m not excited about. History shows my record of success (though I’m not entirely sure how to define success anymore) with this procedure has been mostly positive, with only one negative side effect that landed me in the emergency room. To be clear, I’m not concerned, worried, or scared about having another ablation. At this point, I think I have more experience with them than with dating. Ablation procedures do hurt—a lot. It is very much a "fight fire with fire" approach to pain management. I’m just not sure if this treatment is the right solution for my problem. It kind of feels like going to physical therapy for a bad cough.

This past Sunday, the great Jon Oliver talked about hospice care on his show Last Week Tonight. Based on my personal experience with hospice care for my dad, I felt his show did an excellent job examining this important topic. However, if I have one complaint or suggestion for Oliver, it would be that they should have mentioned the utter weirdness of the first meeting with a hospice provider. For some reason, no one seems to want to discuss this first meeting.

Obtaining a second opinion, any opinion, should be a time of opportunity, of excitement, because it is a chance at a higher quality of life. Maybe if we made it harder to obtain a fast-food cheeseburger than health care, I would not have to write posts about whether I should seek a second opinion because I’m so exhausted from living in severe pain.

On Friday, June 28th, the U.S. Supreme Court overturned a decades-old legal precedent that gave government regulatory agencies the power to interpret vague legislation when crafting regulations. This legal precedent, known as the Chevron doctrine, allowed courts to defer to an agency's and its subject matter experts' interpretation of the law if the statute was ambiguous. Now, judges will make those decisions.

I thought I would share my thoughts and experiences obtained from having so many surgeries. However, to make it more interesting for you, the reader, while providing me with an opportunity to become more articulate, I will add a tongue-in-cheek element that is not normally found in a post like this. After all, if you can’t have some fun while contemplating the ridiculousness that is our healthcare system, are you really a chronic patient?

Can’t a hospital be the one aspect of our care that goes out of its way to reduce vulnerability? Shouldn’t this be part of everyone’s standard of care? Asking who I am and what my date of birth is only helps the hospital accountants and finance people. Why do they get more attention and care than I do during my time of vulnerability?

Too often in healthcare we want to judge success based on quantifiable measurements like fear, risk but not reward, or some other negative that ensures no chance of a higher quality of life. Maybe if we switched to metrics like reward, number of new chapters in our life, or even coolness of one’s scar, we would see higher quality of life scores. Here is my surgical story which is being written after a 6-mile hike yesterday, life isn’t that bad despite the chronic relentless pain and working towards my 12th surgery.

Yes, patient stories need more attention and visibility since we have traditionally been shut out of meetings, conferences, webinars, and other methods of exposure common in healthcare. But this attention and visibility cannot come at the expense of learning about the Rheumatology Research Foundation’s #RheumChampion program. It can’t come at the expense of learning the story behind the Foundation’s $200 million-plus worth of targeted research grants. Like patients, there are researchers and foundations doing incredible work but not getting the attention they deserve. We need to know their stories too because that will ultimately help raise my quality of life! Bringing the patient perspective must mean finding a blend of stories so no one feels left out, alone, forgotten, or intimidated within this beast we call healthcare.

It’s election season?! While the political landscape may seem tumultuous, it presents an opportunity for chronic pain patients like me to advocate for change. As leaders grapple with the complexities of the opioid crisis and its effects on our healthcare system, it’s crucial for them to understand the perspective of those of us who rely on opioids for pain management. To put it another way, we must share our patient stories as loudly and proudly with our leaders, the power of our stories will change minds.