Over the course of eight years, I have been extremely diligent about my search to relieve my pain. Anyone who orbits me knows I’ve tried, tried, and tried again. This past year has been especially stressful as I moved pain management providers, had two surgeries back to back and broke my foot. So I feel as though it goes without saying that I deserve a little bit of downtime.
When I started with my new pain management provider in September of 2017 I was extremely relieved to hear that she viewed narcotics to be just as appropriate as insulin for the right patient. She was like an angel when she agreed with my previous provider’s recommendation to allow me to stay on the meds I had been using off and on for the last seven years.
She started me on a low dose of long-acting and a few immediate-release tablets for breakthrough pain and told me to come back in three months. From that September meeting until our last appointment on May 2, she has been consistently prescribing the same daily dosage for me and I have been trucking through life healing from the rough fall and winter I had.
At our most recent appointment, I confided in her that I was really excited to get back to being as normal as possible for a while. No more surgeries on the horizon (as I had just seen my Gynecological surgeon) and the rehab for my foot was three sessions from graduation. Combined with the fact that she and I only meet every 12 weeks I was really looking forward to a summer of minimal medical intrusion.
She applauded my perseverance, coached me on my efforts to get back in the gym and even discussed my small group’s topic with me at length because she had done the study herself a few years ago. She offered pointers for being the group leader and we had a good conversation about prayer. I was finally starting to let my guard down with her, and felt like she was going to be a great addition to my team long term.
I was over the moon with the easy-going nature of the conversation until she asked me if I would try the drug Lyrica. This medication had come up at other appointments but this time the tone was much less “hey if you’re into this you should try it but no pressure” to “You really need to try this drug because I think it might help you”. When I expressed my concerns about the drug (the same ones I’ve had every other time I was offered it) she backed off a bit.
Then she asked me to cut back on my narcotic.
“Challenge yourself,” she said. “See if you can cut one out a day, or even just a half of a tablet a few times a week.” Then as if she could sense my anxiety skyrocketing she tried to soften the blow a bit more, “Just try to see if you can cut back.”
It’s not hard to read between the lines though. The message “you have resisted my request too many times and now I am pushing back.” Came through loud and clear. I suppose I could be wrong. It’s very possible that the two are completely unrelated and she truly is unaffected by my resistance to the Lyrica, but my gut tells me that this is the beginning of the past repeating itself.
I have tried so many medications and none of them have worked as well as the medications I am using now. I have been on anti-depressants, several different kinds of birth control, anti-spasmodics, muscle relaxers, anti-anxiety meds, several formulations of medical marijuana, and countless supplements.
Beyond that, I have subjected my body to numerous surgical interventions and participated in intense physical therapy off and on for six of the eight years we’ve been at this. I’m wondering if there will ever be a time when I can just live for a while.*
Sure I am concerned about side effects, but those wear off. I’m not super pumped to add another bottle to my nightstand, but if it works I’d happily add that bottle to the pile. The possibility that I will tolerate it long enough to establish a dose and then have to wean off and face withdrawal is a decent deterrent, but again; if it works. . .
IF it works.
That’s the deep, dark secret here you guys.
Every time I have tried something new I have allowed myself to hope that this could be the thing, the relief I have been hoping for. Each and every time I have gotten excited about the possibility of my pain being reduced, my life getting fuller, and things getting easier. And every single time I have had my heart broken when it fails.
There is no preparing for that.
When I confessed this to my provider, eyes welling up with traitorous tears**, she handed me a tissue and in a matter-of-fact tone said “it’s just a trial. Right? Everything we do is just to try it and see; no pressure”.
But I felt pressure.
Pressure, because even if she would continue to prescribe narcotics to me if I kept saying “no” to anything she offered, it’s out there now. The fact that she feels so strongly that this might work is just enough of a “what if” dangled in front of me that I can’t not try it. Because now if I don’t try it I will be the one doing the harm to myself, to my family and to my life. I will be the reason I’m not feeling less pain.
I wrestle with this every time a provider recommends a surgery, a therapy or a medication with any kind of conviction. The picture painted of a possible reprieve from the pain that I have felt every day for the last six years is too hard to look away from. So I allow myself to stare at it until I’m convinced I’m looking at real life.
Aside from that, I feel as though I have to try it just to ensure that I stay on the one thing that has been working. None of this feels good you guys. I feel sick to my stomach because I feel so pushed into this. At the same time I wonder if this is the push I need.
Half the time I am frustrated to tears that I am here again; just days after celebrating the impending return to “normal” life I am faced with yet another change. The other half of the time I am day dreaming about the possibility of this doing some real good and then immediately bracing myself for the letdown I will experience when it fails.
As much as she wants to color this trial with a neutral shade, it is glow in the dark neon green people. As the patient, living daily with the consequences of my diseases I am far too aware of the weight this drug trial carries. It’s impossible to go into it without some kind of expectation. Beyond the complexities of it all, there is the basic concept of the self-fulfilling prophecy.
If I go into this with the mindset that it will do nothing, – or worse, that it will do harm- I am that much more likely to have a negative experience with it. There is something to be said about looking for side effects. So I have no choice but to go into this with the hope that it will make a difference.
It’s not just me either, but everyone close to me as well. Of course, The Hubs has to know I’m trialing a new drug so that he can watch for side effects, changes in behavior, allergic reactions, etc. But he also has stock in this. He also hopes it will be a vehicle for change. If I have less pain then I am more able around the house. If I am more able to do things then our life changes for the better.
Likewise, if this goes badly and I end up sick for days trying to make this work, The Hubs not only has to care for me but for our kids and the house while I try to recover.
There is no way to package this as “just a trial”.
I had to wait for this to be approved by insurance and then processed by my pharmacy so even though this conversation happened a week ago I just picked up the med itself today. I considered waiting until after my annual Tulsa trip to start it, but it will occupy my mind until I try it so tonight’s the night.
Fingers crossed. . .
*This is something I have been wondering for 4 years now.
**crying in front of a provider is never, ever okay. But that’s another post.