A Painful Journey from Confusion to Confusion
Conclusion
Yes, I am starting with the conclusion first—let’s mix things up a little.
I’m so tired and exhausted that I don’t know what to do anymore. That’s my conclusion. Quick side note: as most members of the chronic pain community know, talking about being tired and exhausted often means a patient is in a bad place mentally. It’s our code for heading towards the bad place. That is not the case for me now; I’m just tired and exhausted, which means my confusion is matching my pain levels. I don’t know what the right answer is anymore.
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.
And that’s the kicker: if I’m confused or not enthusiastic about a procedure, how can I expect it to improve my quality of life? It’s also not fair to my doctor or healthcare providers in general to criticize them for my uncontrolled pain when I’m not even convinced of the reason for, or the treatment of, said pain.
From a patient advocate perspective, it’s easy to tell me to trust my feelings, trust my experience with pain, and keep fighting until I get the answer I’m looking for. This makes for a great meme and rallies the community around a viral post. But what if radiofrequency ablation is the right and only answer I have left at this point? As my first physical therapist told me after my rock-climbing accident, “I am lots of hurt.”
From a healthcare perspective, maybe I do have an underlying issue that got obscured by my rock-climbing fall, my 1,202,038,320 car wrecks, and all the damage my neck has endured with degenerative disc disease, osteoarthritis, and facet joint syndrome, to name a few. Maybe with $10 million more in testing and another 5-plus years, the underlying issue will be discovered. That’s a lot to ask from a patient who is already tired and frustrated.
It’s easy to treat a symptom. In many cases, it’s also easy to treat the illness once discovered. What we don’t have a treatment for is confusion (especially when a major reason for said confusion is exhaustion), regardless of whose perspective the confusion originates from. Many, if not most, chronic patients and their healthcare teams experience confusion, even if we try to hide or mask it through things like paternalistic medicine. So I guess the question is, how might we better accept confusion as part of the patient journey so we can build better treatment models that include confusion management? Or better yet, how can we cure the confusion along with the pain at hand?
Pain – What the beep is pain, especially chronic pain?
A 30-second hypothetical for you. Imagine being at your local coffee shop. The barista tells you the total will be $12.92 (you got a piece of banana bread too), so you reach for your wallet. Your wallet is open, and you’re about ready to grab Uncle Visa when suddenly, your neck is in so much pain that you must drop everything. The pain is so sharp and intense that you need a couple of minutes to regroup and calm down before you feel comfortable trying to pick up your wallet. To put it another way, you’re momentarily scared to pick up your wallet. As I’m sure you’ve already assumed, this isn’t a hypothetical for me—it’s happened to me twice in the last 7 days.
For those of you who might not be experienced in the art of chronic pain, there are many different flavors or types. First, there is my normal or everyday pain. Often this pain is well controlled by my pain medication (opioids) and exercise. However, it’s important to understand that “well-controlled” does not mean gone or cured. I’m still susceptible to bad pain days, which my mom or a very close friend might detect, but I can generally hide it from everyone else. Next, there is pain from a flare. A flare is anything that has aggravated my rheumatoid arthritis or one of my other conditions. The only thing that helps this type of pain is time. Basically, I must wait it out. Pain from a flare can send even the most experienced and toughest of patients to the emergency room. There is acute pain, which comes from what my mom calls “overdoing it.” This could mean pushing it too hard at the gym or becoming overly stimulated at a family dinner. Finally, there is strange, weird, undefined, and possibly alarming pain. Patients like me are alarmed because it doesn’t fall under any other pain category, but it has an extra hurt or mental health component to it. It’s alarming, too, because often there is an element of absurdity or ridiculousness to it, like needing to drop your wallet and Uncle Visa because of the intensity of the pain.
It’s this intense, unexplained pain that has me questioning my current diagnoses and wondering if I have an underlying issue that has not yet been identified. This pain episode is relatively new. I had a similar experience while paying my copay after a pain management doctor’s appointment a couple of months ago—chronic pain has a strange sense of humor. For the first time, at least as far as I can remember, after the second episode this week, the pain intensified for a couple of hours before it leveled off. At one point, I even considered going to the emergency room because I felt dizzy and brain foggy. Whatever is causing this pain doesn’t feel degenerative in nature, nor does it feel acute. I’m almost positive it’s new pain.
Time for a quick FYI (for your information). Many, if not most (I’m in this group), will chance putting our own health in danger rather than going to the emergency room for one main reason: the politics relating to the so-called opioid crisis. Too many ER doctors and hospitals have adopted a “judge first” policy towards chronic pain patients. They believe we are only there to score more drugs. We can’t possibly be in so much pain that we are scared to pick up our wallets, so we must be there for a better high. This is despite the fact that evidence shows most overdoses come from illegal drugs bought on the street, for which the victim was not a patient of any kind. I once endured a 20-minute condescending lecture from an ER doctor on my use of opioids before he would give me a Toradol shot—which, if you’re not familiar, is a non-steroidal anti-inflammatory drug and not an opioid. That doc was a true arse!
O.K., here is an introduction:
When I started blogging some 1,002 years ago, it wasn’t because I was on a patient advocacy mission or that I even had a plan for a blog. I had no idea about message creation, nor did I have much of an understanding about the power of my patient story (I’m very much a chronically introverted fellow by training). With no real clue what I was doing, my blogging career started late one Friday night due to a bad mixture of frustration and exhaustion with my healthcare at that time. In my head, the reason my doctors were having a hard time controlling and managing my pain was because of my lack of storytelling skills. After all, my doctors were only as strong as the information they were receiving from me, so it had to be my fault that I had so much uncontrolled pain. To improve my articulation and storytelling skills, I decided to jump on the blogging trend in hopes that it would make me a better patient and storyteller.
It’s now a thousand years later, and I think I am a better storyteller, but my frustration and exhaustion are now at record levels. My neck hurts more than ever, but my doctors are claiming it’s on par with my expected levels of degeneration. The thing is, I’m not sure I agree with them. It sure feels like there is something new in my neck that is either developing or was already there but got hidden by my rock climbing falls, car wrecks, degenerative disc disease, and post-trauma osteoarthritis, just to name a few. In the spirit of returning to my roots, today’s post is about improving my articulation and storytelling skills by sharing with you some of my recent episodes involving my neck pain. With a little luck, and maybe with some well-intentioned commentary from you, the reader, I will become a better patient, which in turn will increase the likelihood of better pain control for me. If nothing else, this post will give me a distraction to work on for a couple of hours, which falls under the category of pain management, for which I’m obviously OK with.
