by Noki4 – TPC Online Community Member

When advocating for others, we bring our “A game” to the table. We have our ducks lined up in perfect formation, and we know what we have to do. Unfortunately, the same is not always true when it comes to advocating for ourselves or taking our own advice.

I’ve lived with chronic pain for nearly half of my lifetime. Over the last 20+ years, I’ve learned so much through my own experiences and from others who are also on a “pain journey.” For those of you who are new to this journey, you’ll find that you never stop learning new things. You’ll get tips on how to live better with pain, how to use medications safely, and so much more.

My story today is about medication safety. For those of you who are on medications for pain relief, it’s the #1 thing you must learn and take very seriously. It should be in the back of your mind at all times.

I have a wonderful primary care provider. He’s not only been my family doctor for many years, he’s also my pain doctor. Over the years, we’ve formed a very good provider-patient relationship. It isn’t friendship; it’s a working provider-patient relationship. It means I am not afraid to ask about new treatments or to question him when he is suggesting a new treatment or medication that I am unsure about. It means he knows that he can trust me to take my medications exactly as he has prescribed them. It means that I trust him.

I gave you that little bit of background on the relationship between myself and my provider, because it plays a very big part in this story.

My long acting pain medication is a fentanyl patch. I’ve been using this same medication for many years. Not long ago, I found myself in unfamiliar territory and all common sense went out the window. I found myself up the proverbial creek without a paddle. Here’s what happened.

I had changed my patches earlier in the day, just like I do every other day. Nothing unusual on this day with the exception that we were having a major snow storm. We already had more than 12 inches on the ground, and it was still falling.

All my neighbors were outside trying to stay ahead of the snow by shoveling every couple hours. As I stood at my window watching all the activity, I felt left out. I wanted to be a part of the happenings. I knew I couldn’t shovel snow but I could help clean off vehicles. I went to great lengths to get dressed properly with lots of layers of clothes. I headed out and had some great fun with all my neighbors. We even had a spur of a moment snowball fight in the middle of the street.

When I came back in the house, I was cold but happy. It was a good time, and I was glad that I went out even though I knew the cold could and would increase my pain levels. I removed all the layers of clothes and finally got back to my outfit for the day. But, when I went to hang up the wet clothes and raised up my arm to hang up a shirt, I felt a tug on my arm where the pain patch was. “Hmm, what is that?” I thought to myself.

I went to the living room, sat down, and rolled up my shirtsleeve to see with great horror that the pain patch had come loose. It had not only come loose it, was stuck to itself, and only a tiny bit of it was still flat and attached to my skin. My ability to remain calm and think through the situation in a thoughtful manner failed me. What do I do? How do I fix this? Can I fix this? Will the pharmacists believe me? Will my provider believe me? Total panic took over. Like all pain prescriptions, you get a set number each month and there is no room for mishaps.

I pulled the patch the rest of the way off and began to try to unfold it. Imagine a band aid you have just removed and you fold the sticky part over on to the other sticky part. If you then try to unstick it, it doesn’t come off nice and flat. It rips and tugs and wrinkles, and the more you mess it, the worse it gets.
That’s exactly what was happening with the pain patch. The more I tried to flatten it out so I could put it back on, the more it became unusable. My heart sunk to my knees. I thought, “Oh no, oh no, oh no! This cannot be happening.”

I already knew that the manufacturer’s instructions were to dispose of the patch and replace it with a new one. I knew that was the safe thing to do. At the time, however, my mind and my common sense were not talking to each other. I was in a total damage control mindset. As I sat there trying to unfold this sticky mess, and the longer I messed with it, the more panicked I became. I finally gave up and came to the conclusion that it was unstuck and unfolded the best I could. I put it back on, sat there, and stared at it. My mind finally started working again and was telling me, “you know better than this; you know this isn’t safe; you know not to do this. What in the world are you doing?” I shook my head trying to get my mind to be quiet—even going so far as to say out loud to my own mind, “Stop talking to me!”

When I heard myself telling myself to be quiet, it was at that moment that my common sense came back. I pulled the mangled patch back off and picked up the phone. I dialed the pharmacy—hoping that my favorite pharmacist was working. I was confident that he would help me sort this mess out.

The winds were blowing in my favor. He was there. I told him what had happened. I knew that I had never ever given him any reason to doubt that I was a legitimate person living with pain, and that I always utilized all medications exactly as prescribed. Yet, my mind was still whispering, “What if he doesn’t believe me? What if he calls my doctor before I get the chance to explain what happened? What if, what if, what if?”

After hearing my explanation, he said, “We already know what the manufacturer says to do; we know that the insurance will not replace one patch; and we know that this may put a tiny red flag in your medical file, even though I do believe you, and I am sure your doctor will also.”

I said to him that I was pretty sure I got it flat enough, and that it wouldn’t hurt anything to put it back on. I lost it again for the moment. Then I heard my common sense scream at me, “Are you crazy? You know better than that!”

As I was thinking this, my wonderful pharmacist said to me, “Let me ask you a question, “What would you tell someone you were helping if they were in the exact same situation?” That one question stopped me in my tracks—it stopped the “what ifs,” and I came back to that place where I knew what to do and how to practice safe use with all medications. I thanked my pharmacist for being there for me. We discussed what our next move would be, and I hung up the phone.

I removed the mangled patch, took a photo of it, and disposed of it. I replaced it just as the manufacture’s directions said to do. I sat down at my computer and logged on to my doctor’s patient portal to send him a detailed explanation of what had happened and included the picture of the mangled patch. I explained what steps I had taken to fix the issue (leaving out the hour and half of sheer panic. I would tell him about that in person at my next appointment which was in two days).

I sent the email and I waited for a response, checking my email every few minutes. After refreshing my email for the millionth time, there it was in black and white. I was nervous and scared about what this could potentially do to the years of trust I had built up with him. I had heard the horror stories from other people living with pain about how one simple mishap or mistake ruined their relationship with their provider—even those that had been ongoing for years. Several of those patients were dismissed or fired by their providers.

I opened up the email and did not realize that I was holding my breath until I almost passed out. His reply was short, but to the point. He said that he had gotten my message, understood what had happened, and that he called and spoke to my pharmacist. He went on to say how proud he was of me for doing the right and the safe thing—even knowing there was a chance this could put up a red flag to him and my pharmacist. He went on to tell me that we would figure out how to get me back on track, since I did not have right amount to finish out the month.

The moral to this story: no matter how bad the situation and no matter what the possible outcomes may be, always, always take your own advice and do the right and safe thing.

Be safe everyone.

Noki4 – TPC Online Community Member