RA and the State of Pain Meds

I have been lucky thus far. The pain pill issues and the war this country is waging on pain patients has only touched me somewhat — with pill shortages here and there and some minor hiccups. For the most part, though, I’ve been lucky. That is, until now.

I have a surgery scheduled in ten (that’s 10) days from writing this, and I have suddenly gotten a message that my procedure has been delayed or canceled "as per the pain department." Here we go.

My surgery was canceled

I have had surgery before, and I have had pain before. Those of you who read my articles on the Blood Cancer community site know that I recently had cancer, and when you are talking about pain, there isn’t much that's more painful than cancer. Even through all of my previous procedures and the cancer, they were able to control my pain and keep me at least mildly comfortable in the hospital.

Now, suddenly, my surgery has been canceled out of the blue with no warning whatsoever – so suddenly that, if I had not checked in, I would have walked into the hospital on the morning of surgery and then been told it’s canceled. It’s as if I went to pick up a new car, having already sold my old one, only to be told, "Have fun taking the bus."

This is the state of pain medication for chronic pain patients now.

Pain management is a big part of my care

Yes, we are all aware of the opioid crisis and how it has seriously affected this country. It is a terrible thing for sure and should be a priority for us to resolve, but taking it out on chronic pain patients isn’t the way, and canceling surgeries without any warning definitely isn’t the way.

I am a patient with a documented 30-year history of surgeries, rheumatoid arthritis, cancer, heart attack – you name it, and I have most likely been through it. As you can imagine, pain management is a big part of that care, because after a certain point, there’s just not much the doctors can do to manage the condition other than mitigate the pain symptoms. I can take more steroids, but that comes with significant side effects, as many of you already know. So that means it’s pain meds or nothing, and nothing isn’t an option.

Pain medication is crucial for quality of life

Pain meds are just like any other med in that they are necessary, needed drugs that give people who otherwise have no options a way to claw back some quality of life. Without pain meds, I wouldn’t be able to do any of the things I do now, including writing this article.

Just like insulin or chemo, pain meds are an essential part of the regimen that people like me use to control our illnesses and their myriad of symptoms. Taking away any part of that regimen, be it immunosuppressants, anti-inflammatory drugs, or pain meds, would result in the same thing – a serious decrease in the quality of life for me and many others who rely on them.

Decades of experience dealing with pain

That brings us to today, where I am literally fighting for my right foot. The surgery needs to happen or I may lose the foot, and now I am in a struggle with a pain department that is filled with doctors who have likely had their licenses for less time than I have been living with chronic pain. That fact doesn’t inherently mean they don’t know what they are doing, of course, but it does mean that I, the patient, should be listened to, considering I have decades of experience dealing with pain. Disregarding what the patient has to say about their own body is a recipe for disaster. We know our bodies best, better than any exam or blood test could show.

Another plan?

So now it’s a waiting game, as I continue to call and leave messages for doctors who never seem to be available to talk on the phone. I may even have to go there and make myself a nuisance to be seen, which may result in me still being told "No." If that happens, then I’ll have to make another plan, as all of us who live with chronic illness are wont to do when things go awry (which they often do.) It just seems criminal to me, though, that simply because we take pain meds we can be cast aside without even a phone call.