I kept falling asleep while I wrote this…and when I tried to proofread it, the same thing happened. So, oh well! It is what it is.
Remember how I mentioned pain management last time? How I said I’d had to call, almost immediately after surgery to say, “Yo, this medication isn’t cutting it, can I take more?” And then, I had to go see them, again, to say, basically the same thing?
Well, I had to call again. It still wasn’t strong enough. I was told to take a different combo of the same meds, at a different time. Because of the amount of meds this would require, I needed a refill almost immediately. I know, I know, it sounds like I might be a giant baby. Or, I am craving my Dilaudid and Oxy combo, and becoming some kind of fiend. Or, the most likely scenario, the whimpers and sobbing that came out of me, as the meds wore off, are indicative that the medication is both not strong enough, and not lasting long enough.
So, now I was on visit/call number FOUR, to pain management. This time, I was scheduled to see the actual doctor, not her PA. This was the big time. I was both afraid, and excited. I was afraid, because I knew I had to tell her that I’d been taking one extra pill per dosing period. I knew that was important for her to know, so she could dose me properly, when she adjusted meds; but, this was the first time I’d ever taken more medication than I was prescribed. To put that in perspective, I’ve been on opiates of some kind since 2014. In five years, I’d never taken a single extra pill. That’s how brutally painful this surgery has been. So, this scared me, because I was afraid she’d think I was taking them for the wrong reasons. In reality, if I didn’t take them, I was shaking in pain. I was excited too though, because I thought that she might be able to help me. There is nothing, nothing, nothing that will ever shake my optimism about seeing a doctor when I’m truly sick. I continue, perhaps blindly, to believe deeply in the curative power of the white coat, and the deep humanitarian desire to help others that they all share.
Sitting in the waiting room was brutal. I’d gotten close to my dose time while we were sitting there, so I was in agony. It isn’t that I couldn’t take my meds while I was at the doctor; they have water, and I packed my pills. It was that I couldn’t take them for another hour or so; I was only close to my dose time. Close means my meds had worn off, and I was suffering. The worst part was that we had sat there, patiently, for forty-five minutes past our appointment time, before we asked the front desk if something had gone wrong.
They, of course, said I was next, and I’d be called momentarily. You could see them scrambling behind that little window. Someone had clearly misplaced my chart. I’d never have been called, had Bryon not gone to the front desk and asked about me. They called me back, almost immediately…to what amounted to a spare stock room, not an exam room. Sure, I was next. It was absolutely planned this way. Except that the tech that called me back profusely apologized for misplacing my chart and causing the whole thing. I do love when people apologize for messing up when they are in a face-to-face customer service industry, it makes all of the difference in the world. I was immediately no longer frustrated.
Anyway, when the doctor came in, a doctor who I’ve never met, yet who is the doctor I’m billed under every time, this is how the beginning of our conversation went:
R: I don’t know you. (yep, this is how I greeted her). I mean--sorry. Probably should’ve said something else, it’s just that I have been seeing someone else. Maybe---
Dr: Probably Diana?
R: Yes! Diana!
Dr: Don’t worry. I oversee all my patients. I’ve read your chart from top to bottom and I just reviewed it now. I see your meds are fucked up for this. Tell me about your surgery. It looks like hell.
R: (Shocked pause….then told her about the surgery).
I thought I would never find a doctor I loved as much as Doctor W in California, but she’s quickly becoming a close second. She swore, so goddamn much, I was impressed. I’ve never seen a doctor behave like that. But, It wasn’t he swearing that I liked, it was the matter-of-fact way that she dealt with my situation.
When I told her that I was taking an extra pill at every dose, she wasn’t mad, she didn’t judge me; she said she was glad I told her because she needed that info for her math to figure out how to plan to dosing for what she wanted to prescribe next. She was pissed that her staff of PA’s didn’t think of putting me on a long-lasting opiate, instead of short-acting ones, that work, but have the nasty tendency to provide peaks and valleys of pain relief and absence of pain relief for patients in acute pain.
I told her that I’d specifically asked for an extended-release opiate when I came in, before my surgery, and we discussed the plan for pain relief. The doctor got angry when she heard that. A few “F-bombs” were dropped. I explained that, based on my brain surgeries, I knew that had been what worked the best for me, for serious surgeries; so, it was my best guess here.
Now, four weeks in, I was up to 80 mg of oxycodone, and 16 mg of Dilaudid a day. That is an insane amount of opiates. It was enough to be getting dangerous, especially when combined. The worst part was that I was still in pain, despite the massive amount of drugs I was taking. It seems impossible, but I was. I could kiss my doctor for telling me that it wasn’t, and that it was perfectly reasonable to be in this kind of pain with short acting meds, after this kind of operation.
She scribbled on a piece of paper for several minutes doing all kinds of complicated math. She mumbled half addition and multiplication problems randomly, drew arrows all over my intake page, crossed-out, and finally came up with an answer. She prescribed an extended-release opiate, in the 36 mg dose, which happens to be the largest it comes in (the pharmacy had to order it). I take it twice a day (every 12 hours). Additionally, she prescribed a short acting opiate for breakthrough pain that I’m allowed to take up to three times a day. Viola, a plan that should work.
She ended the appointment with this:
“You call here if there is a shitstorm, and we’ll fix it. This amount of pain is unacceptable. Un-accept-able. We’ll get through this. Together. I promise.”
There’s no way of explaining how awesome it is to feel like your doctor is totally on your team. I felt like I could pick up the phone, at any time, call, and say, “it still hurts, help,” and she’d drop everything to call in something new. I needed that feeling, right then, after struggling for so many weeks.
So far, for the last few days though, I think we may have found the right balance. The problem will be that getting off the extended release opiates is a different story than getting off short acting opiates. It is a whole different animal, and a pain in the ass. I’ve done it before, and I can do it again, but ugh. All I can say is that at least it’s not Fentanyl.
Alas, this is where we are at, at the moment. I’m finally on extended release opiates, and I just started PT, which is brutal. I cried yesterday, but she didn’t stop. I think she liked watching me writhe. I am still taking my Harvard class, and kicking ass in it. Yeah, that’s right, broken leg and all, I’m doing awesome. Nothing brings me more joy than school. I’m crazy, I think. I wish we had class every day. I can’t wait for next semester, when I have two classes. It will be a dream!
I am up to being encouraged to bear 25 lbs. on my broken leg, which doesn’t sound like much, but the goal is to be off the crutches in about a month. So, between the exercises that PT has me doing at home, the massages that they want me to do, and just regular aches and pains of healing, my leg is giving me a run for my money. Thank goodness for new pain meds, and a pain management doctor who cares about pending shit storms.