I witnessed something recently – and it was something that we are aware of about ourselves but watching it in action was interesting.
A good friend of mine, who is also a chronic pain patient, had the bad luck of breaking her hip. She then had the even worse luck of contracting pneumonia postoperatively. She was put on a ventilator shortly after her surgery and basically was aware of nothing for the next 9 days. She came to on Saturday and they removed the vent on Sunday. I think she is still a little traumatized by the whole thing.
She is in Intensive Care, and I spent the day with her. Like all of us, she is scared to ask for pain medication because…well, we all know how we’re treated. This time, she was basically being told one thing – that the nurse (we’ll call her the Ice Queen) would let her know when she could have a pain pill – and then expected to do another – no pain medication unless she asks for it.
Mixed messages are fun, aren’t they?
We brought to her nurse’s attention that it had been six hours since her last pain medication, and that the nurse had told us that she would let us know. The nurse immediately became extremely defensive and began to talk about tapering her down. This is, of course, the response we usually get – the one that we usually expect - the lecture about how dangerous opioids can be.
I supported my friend, and kept my mouth shut to the nurse. A very kind doctor came in a few minutes later and I expressed some concern. At this point, my friend was in tears. The doctor really got it. He promised that nobody was going to be tapering anyone and promised to make a note in the chart.
She got her medication and once it took effect, she decided to nap so I left for a little while. When I returned, my friend was in tears again. The pain was ramping up and she was generally emotional from everything that had been going on.
The Ice Queen came into the room, and we asked if she was due any medication any time soon.
“You have to ask for it” replied the Ice Queen. “I think I should warn you that I’m recommending that we start taking you off the medication. I think you’re an addict.”
As you might have guessed, that was just the push needed for both of us to basically go off. But the Ice Queen wasn’t listening.
I’m sure that we were hard to understand because we both started talking at once. Reminding her what had been said just six short hours before.
You could just tell that the Ice Queen was not pleased about being confronted by two chronic pain patients.
After she left the room, my friend and I talked about how this was the perfect example of why we don’t like hospitals, emergency rooms, doctors in general.
We discussed how in our normal lives, we don’t want to be labeled the victim but that at the same time, it was not always easy putting that same old mask on every day. The one that tells the world “I’m fine – don’t you even try to mess with me – I got this.” Whether we really do or not.
It had been a lot of years since she had been through surgery. I had to remind her that this is not the time to postpone things and be a martyr. That this is when you must speak up.
Shift change came – I was so relieved that my friend wouldn’t have to deal with the icy one for too much longer.
Pretty sure the Ice Queen hand-picked who would oversee my friend’s case that night. This dude was just as bad perhaps worse.
My friend told him that she was really having a lot of trouble. That the pain was too much. He wordlessly left the room and came back with a pill. As she took her medicine, he looked straight at me and addressed me directly.
“This medication is dangerously addictive – you don’t realize what you are dealing with.”
That was just about enough.
I looked at him straight on and said “my friend and I are more aware of what this medication does and does not do than you ever will be. We are both chronic pain patients. I doubt that you could handle a day in our shoes.”
My friend was agreeing with me – at this point we may have started raising our voices just a little bit.
He asked what her pain level was, only to be met by a fresh round of tears. The only thing that my friend knew for sure was that she was suffering from a new and different pain. She tried to explain it. This time, he looked at me and asked if I could explain to her what he was asking for.
“We know what you’re asking for – you are asking someone who is in horrific pain already to label her pain. At this point, I don’t know if that is possible.”
I heard sobbing from the bed.
“Do you understand what I’m asking her?” he asked
“Yes – you are asking a woman who is constant pain to define this new pain that is obviously really taking its toll on her.”
“That’s right but do you understand the difference?”
“Yes sir, I do. Surgical pain will get better. She will heal and it will hopefully go away unlike the pain that she already suffers from.” He glared at me, I glared back.
“It’s a pain we wouldn’t wish on our worst enemies.”
After a long moment, he said “I will just write down that it’s a 10.”
“You don’t get it. This is no 10, it is just different. We are actually used to worse.”
I hear from the bed “it’s a nine.”
He left the room.
A short while later, a wonderful lady came in and told us that they had moved that nurse to a different patient and that she would be taking care of my friend that night.
She might as well have had a halo and wings.
My friend was still upset. I had been preparing to leave anyways, so on my way out, I pulled the new nurse aside.
“My friend and I are chronic pain patients. She has been through a traumatic experience from this whole ordeal.”
I briefly explained how her day had gone. The new nurse had not even had a chance to look at her chart yet. She listened. She had a warm smile.
I told her how there had been mixed messages and how, as chronic pain patients, it isn’t always easy for us to ask when it comes to pain medication. I told her how we are all a little gun-shy from various experiences.
She got it. She really understood. She immediately went back in the room and showed more warmth and compassion than anything we had seen that day.
Knowing that my friend was in good hands for the night, I went to leave. The nurse stopped me. She asked me if I was okay. I told her that for me it was just a normal pain day.
She asked me what number my pain was.
I told her that I function at an 8.
She thanked me for taking the time to talk to her. She thanked me for speaking up – and told me that I should find a way to be heard.
I had to smile. If we can only educate one at a time, then that’s what it will take.
But it was truly interesting to watch the whole scenario play out.
I headed back to the hospital the next day. My friend doesn’t need the extra stress. She is still too weak. If I can help by speaking for her and with her, then I will be there every minute until she is discharged.
We live in quite a world when your encounters with nurses turn into an educational experience…for the nurses…