The Balance Between Chronic Pain & Rules

Dad Joke Time – Did you hear that the Pope has a bad case of the bird flu? Doctors think he caught it from one of the Cardinals.

Good Morning (check local clocks for your own specialized greeting)

One of the first skills I learned as a ski instructor was that the key to success is to steal exercises, progressions, and class handling techniques from more experienced, certified instructors. Why work harder when you can steal good ideas from others? That was the logic. Most senior instructors understood and were happy to help me understand the "why" behind what they did so I could become better or pass my next certification exam. For them, it was a sign of respect. There were a few cranky, old—let’s just call them—dudes who did not like to share, but that is just life. Thanks to these helpful senior ski instructors, I was able to quickly move up the ranks in our ski school.

As I’ve continued my journey as an e-patient or patient advocate, I’ve found that stealing from other advocates, regardless of their disease silo, is still one of the best ways to improve my own advocacy skills. Just because a narcolepsy or cystic fibrosis (CF) patient talks about a particular subject or aspect of healthcare does not mean it won’t apply to my world of chronic pain and rheumatoid arthritis. Often, these other advocates are just experiencing something in their own story before I have had a chance to. Others are just, frankly, smarter and more articulate than I am.

Diabetes advocate, fellow Stanford University #Medx e-patient scholar, and friend Dana Lewis is a great example of an advocate who is smarter and more articulate than I will ever be. If you are not familiar with Dana’s work, she, along with her husband and some others, essentially invented an artificial pancreas and then shared it for free with the rest of the world. She is a blogger, speaker, designer, author, and superwoman (Dana's Story) who gets her message out through multiple media and content styles. And now, she is a victim of a Big Al theft.

Today’s post is inspired by a recent post of Dana’s (Click Here For The Post) about the complex balancing act between knowing when to break the rules of healthcare versus when bending them is the proper course of action. Dana does an excellent job of discussing this on a high level; I’m going to try to illustrate these ideas by using my neck pain, rheumatoid arthritis, and type 2 diabetes as a foundation. To put it another way, I’m going to try and dive deep into the weeds of my disease silos to bring to life these important ideas that patients are faced with almost on an hourly basis throughout their lives. As we say in skiing, it’s now time to send it.

Quick Background

Many, if not most of us, like to pretend we are good people who are above the normalization of online cruelty and judgment found on social media platforms like Twitter. This tends to be the case until someone’s story differs from our own—then, it seems to be all right to attack. In the world of chronic pain and rheumatoid arthritis, attacks are common when discussing exercise, of all things. Based on my personal experience, attacking people like me who utilize exercise is now normalized. I mention this because I’m going to be talking about utilizing exercise to help reduce my chronic pain and rheumatoid arthritis flares.

When I left my last job in April of 2023, I decided one of my goals was to get back to the gym on a continuous basis. No more one month on, three to six months off like I had been averaging while working with my health conditions. I wanted—frankly, needed—to get back into the gym on a regular basis. Turns out, just because I can remember my 20s doesn’t mean I’m still in the same shape as I was back then (I know, breaking news, right?).

To make a long story shorter, I began this goal by trying to go three days a week and spending at least 15 minutes on the stationary bike. Understanding my health is a factor, I considered going to the gym twice a week and spending at least 12 minutes on the bike a win. On days I felt “good,” I would allow myself to spend an extra three minutes on the bike during that first month. A win that first month back was normalizing going to the gym on a regular basis, not the time spent exercising. Normalizing exercising would start in my second month back.

Since I entitled this section as a “Quick Background,” I will jump ahead to today. I now go to the gym five to six days a week and spend at least an hour there exercising. Impressive, right? I almost have the confidence to start posting body pics like every gym influencer. Despite what many will say, exercise does help with pain management. When done smartly, it does improve one’s mental state, which makes coping with pain easier. And probably most importantly, the fact that I exercise regularly does NOT reduce the severity of my conditions or make me any less of a chronic patient—all of which I’ve been told in the past by fellow patients and so-called advocates.

Sitting Is Truly the New Smoking

I have not talked online about this yet, but last month I went to work as a temporary Processing Clerk for the Idaho State Tax Commission. In simple terms, I sit at a desk 8 hours a day and process individual tax returns looking mainly for typos, software errors, and obvious mistakes. Basically, my fellow temps and I were hired to process the “easy” returns while the full-time, regular staff handle the more complex, problematic returns. Although it probably sounds boring to most of you, I enjoy the work because it is like a puzzle of which I’m trying to put the pieces together so taxpayers can receive their refunds as quickly as possible. Now that I think about it, I’m guessing there probably isn’t much of a market for tax nerds who show their gym bodies online so maybe I shouldn’t act like I’m a gym influencer 

Now, I’ve talked a lot about how my neck continues to deteriorate which means more and more pain for me. After about 3 hours of sitting at my desk on my first day, my neck started to act up because it was not happy sitting and staring at my 2 monitors. The trauma from the immediate increase in pain aggravated my rheumatoid arthritis which started a bad pain flare the start of my second week back. This sounds more dramatic than I mean it too because this isn’t unusual at all for patients like me. In fact, it is so routine that getting an extra tasty coffee at Black Rock or Starbucks is often considered more interesting to us chronic pain patients than a flare which are a regular part of our lives.

One of the more common symptoms of a bad pain flare is brain fog. Basically, brain fog is when 2 plus 2 equals Alan posting scandalous photos of himself online because he had a great workout at his local YMCA (ok last gym influencer joke I promise, you don’t need to ask if I understand the phrase “beating a dead horse”). In life, brain fog commonly leads to ego embarrassment due to foggy decision making but while processing a tax return, it can mean thousands of dollars going in the wrong direction if I make a wrong decision. The trouble is, I can’t ask my boss if I can go home and lay down for several hours every day so I can ice my neck or knees in the hopes of breaking the pain. Well, I could if someone would be willing to help me set up a moderately successful Only Fans page to make up for the loss of pay from going home every day(my expenses are low so that’s why I say moderately successful).

As a type 2 diabetic with rheumatoid arthritis, and chronic pain, health care has rules and regulations largely to help me to remain “stable”, some of which are designed to protect my doctors, and others are there to hopefully prevent the severity of my pain from reacting levels that cause me to go back into atrial fibrillation like it has in the past (last time it took 4 heart procedures in 90 days to get my heart back into normal rhythm which was not fun).

Probably the rule that affects me the most is I’m limited to only 4 Oxycodone’s a day. Technically, I’m limited to 1 tablet 4 times a day. This means I’m not supposed to take a double shot even if my pain levels shot through the roof like one might with Advil for example. Now, when I was unemployed this rule was easier to follow. If my pain levels did shoot through the roof, it was relatively easy to call it a day and head home to ice my neck or whatever joints I needed too. Obviously, work would prefer I take 0 tablets during the day. The trouble is pain almost never responds to a treatment the same way twice in a row. Although success is often measured in terms of a yes or no proposition by doctors, the public, employers, and even many patients that is simply not the case when said pain is chronic. That’s one of the reason’s I’m such a proponent of patients having a large amount a discretion or if you like this analogy better, a large amount of rope to treat their pain on a moment-by-moment basis as needed.

At this moment at the office, I have increased neck pain, which is causing my rheumatoid arthritis to flare, which is now starting to give me a headache too, but I still have another 4 hours of work (or 30 tax returns to finish processing) before I can leave work. In this state, rules are becoming less important to me because the need for any kind of relief has become more important (this inverse relationship needs to be discussed more by doctors, policy makers, academics, and of course patients).

My pain management clinic is a fan of using caffeine to combat headaches, especially headaches caused by increased pain levels. Research has shown too that caffeine can act like a pain reliever too. The trouble is most caffeine comes in some sugary drink like soda pop. Now diet Coke does not have sugar, which obviously helps keep my diabetes under control, which is another health care rule, it does have enough acid type chemicals in it to clean battery acid (I’m not kidding, trying using it one day and you will be amazed at how well it cleans battery acid) despite it being so tasty.

So, with all of this in mind, here is the play I went with to try and prevent me from needing to go home because of my pain and brain fog. Instead of drinking my water with my lunch that I had brought from home, I went to the cafeteria on campus and got a large diet Coke. I did my best to drink is slowly so it would last me for the better part of the afternoon in the hopes it would control my headache. In addition, I took my second dose of Oxycodone at lunch instead of trying to wait until I got to the gym at 4pm like I normally would. If you are curious, in a perfect world, I would be allowed to take a dose at breakfast, lunch, before the gym, at dinner, then one before bed so I would have a better shot of sleeping through the night. Finally, decided to go to the gym and workout for at least 45 minutes instead of my usual hour.

Despite what many patients and some stupidly conservative doctors will claim, exercising does not put me in anymore danger, nor will it further aggravate my rheumatoid arthritis flare any more than it already is. If I’m going to be in pain regardless of my activity level, I might as well try to work out because it will increase my chances of a better tomorrow with the same risk tolerance if I didn’t do anything. Yes, there are days where I can’t physically or mentally finish either a full or even a partial workout and should walk away because the risk of injury is higher in that situation. However, the key is understanding that I’m only walking away from that individual session, not from exercising altogether. Often the increase in blood (oxygen), flowing to my joints can provide measurable relief, especially when combined with my Oxycodone use, which makes sleeping a lot easier while in a flare.

In the end, I consider my play to be successful even though I’m still in a flare. By drinking the diet Coke and taking my second dose during lunch, I was able to get through the rest of the day without a major mistake or a dramatic drop in my production levels. Most importantly, by at least attempting to work out that day, I was able to get enough sleep to continue to get through the next day and the next without incidence.

Plausible Deniability

When it comes to all things medicine, it is easy to want to follow our doctors’ orders without question or deviations. Afterall, we pay often obnoxious amounts of money in the hope that their orders will raise our quality of life to new levels. On paper, seems like a simply of enough transaction.

Much like life, there is nothing about life that can be classified as simple (unless you are talking about the joys of a good chocolate chip cookie). The perfect world I describe earlier can exist if you are willing to let’s say experiment with the rules. For example, my Oxycodone bottle does say “as needed for pain” at the end of the sentence. Does that mean if I don’t use all 4 tablets on a good day that I should throw the leftovers away or return them to the pharmacy? Of course not. As the bumper sticker says, sometimes rules are meant to be broken. Risk and Adherence are Excel spreadsheet columns, they mean next to nothing in this game we call life, especially if that life involves near constant pain.

Time To Wrap This Up Mr. Chatty

For my conclusion, I’m going to end my post with something Dana said in hers that was brilliant because it perfectly articulates what a life of near constant pain is like. She points out that “Over time, it can be hard to resist the conclusion that the rules don’t matter or don’t apply to you. The reality is somewhere in between. And it’s the in-between part that can be a challenging balance to figure out. Learning to navigate this balance requires understanding which rules are flexible and which aren’t.”

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. Some days that will mean only working out for 20 minutes and not post body pics (sorry I could not resist one more stupid joke). Other days it means take a dose of my pain medication with a diet Coke then hit the gym despite tears in my eyes due to my high pain levels. Then there are days where I must utilize a “perfect world” strategy to get through the day. Yes, the fall will hurt, both physically and mentally. But if I look at the challenge as an unavoidable part of my life, I can learn and develop skills to lessen its impact so instead of going to the gym, maybe, just maybe I can return to the mountains with my skis which is where I rather be in the first place after processing everyone’s tax return of course.

Does your Dad have his name on a fighter jet???