I have been seeing my current pain specialist for about a year. During this time, I’ve made a lot of progress towards a stronger body thanks to lowering the pain using ketamine infusions and working my butt off every day. Everything is going great, which is why it was strange to wake up early today feeling trepidation about attending an appointment that I’d been looking forward to all week.
That anxious feeling was just the ugly face of history threatening to repeat. In my experience, pain specialists often get a bit antsy around the one year mark. Some of them decide that 12 months is long enough for me to be cured of CRPS already and then decide not to treat me anymore. I know, right? It’s hard to be a doctor and not be able to fix incurable diseases by magic, it’s really hard to exercise compassion when reality is reminding you that your medical degree does not make you a god.
Please, everybody, let’s take a moment to appreciate the overpaid medical specialists who were studying so hard that they forgot to develop emotional maturity. Those poor dudes.
Now, let’s talk about what happens when a specialist is supportive instead of distortive… (What do you mean that isn’t a word? It fits into this sentence perfectly!)
It was so freaking amazing to have a totally positive consultation this morning! It went something like this:
Pain Specialist: You look amazing! Have you lost weight?
Me: Yeah, I can move now! My legs have muscles in them!
Pain Specialist: Yay! (might be paraphrasing) Are you still studying?
Me: Nah, my hands broke down before I could finish the course. They started flaring badly about a month after the last infusion because I did some weeding and it was too much for my forearms to handle, then I learnt that I need to be stretching my forearms because they’ve forgotten how to be flexible, so I’ve been doing that since then.
Pain Specialist: *nods* You’ll probably find that building up that strength will take time, much like it has for your legs.
Me: (WOAH DID YOU JUST NOT YELL AT ME FOR NOT GETTING BETTER IN A STRAIGHT LINE?!) That’s what I figured! They’ll catch up if I keep working at it.
Pain Specialist: You’re doing really well. A lot of patients want medication to be a straight out cure, however relieving the pain doesn’t help much in the long term without a lot of determination to improve strength and lifestyle.
Me: (WHY ARE YOU MAKING SENSE? ISN’T THIS THE PART WHERE I GET KICKED OUT AND THEN GO HOME AND CRY?) Oh, and I’ve stopped taking all my meds. I tapered them off but they’re all stopped now.
Pain Specialist: *nods* *makes note* *smiles*
Me: (AM I DREAMING? WHERE IS THE LECTURE BECAUSE I MADE AN AUTONOMOUS DECISION ABOUT MY HEALTHCARE?)
Pain Specialist: OK, so we’ll do another day? (of ketamine)
Me: Yes please! ASAP please!
Pain Specialist: Sunday?
Me: I’ll be here!
And… Done. Basically. I mean, we chatted a little more than that but you get the gist.
The things that made this appointment fabulous from a patient perspective were as follows:
The doctor listened when I explained about my hands playing up and acknowledged my efforts to cope with that hiccup. A lot of doctors seem to forget to pay attention to their patients’ answers because they’re too busy thinking about what the patient “should” be saying.
The doctor did not have impossible expectations of me. The assholiest Melbourne specialist that I’ve seen once berated me about not having a job or volunteering even though at the time I could hardly walk or feed myself. As you can imagine, that was super helpful and made me feel absolutely chipper.
The doctor did not blame me for my condition. Sometimes chronic conditions get worse and sometimes they get better and it’s usually not the patient’s fault. We don’t live in a completely controllable environment, I know. Shock! Horror! Can somebody please tell Centrelink?
And so… I shall be off to hospital for infusing this weekend and I’m super excited! Seasonal flaring has made the last couple of weeks difficult and it will be wonderful to get some relief from that. Hopefully, everything will keep running smoothly and after the infusion I’ll be able to build up more functionality.
I just can’t tell you how wonderful it is to be able to look forward and actually see how things could be better and then look to my side and see there’s a doctor willing to help me on the journey. Amazing. I will never accept bad doctoring again, I mean hopefully I won’t encounter it, but if I do, that bad doctor will be getting a calmly articulated piece of my mind rather than a tissue full of my tears.
Love & Smiley Hugs,