“Why don’t we try to maintain some continuity of care, yes?”
The doctor was staring me down. I’d just explained that she was the fourth rheumatologist I’d seen since moving to New York six months earlier. In the three years I lived in New York, I saw six different rheumatologists.
I liked Dr. Four. She’d completed a fellowship in ophthalmology, which put me at ease since I was having problems not just with my joints but also with my eyes. She nodded with empathy when I cried while describing how bad the prior three doctors had been.
“I think we are going to work well together,” she told me. I hoped so.
People are always surprised by my doctor horror stories. They assume that because I’m a lawyer, the doctors who see me will be especially careful with my treatment. I could sue them!
I’m a proactive patient. I will try any kind of treatment you suggest. I will show up for my appointments. I will timely take all of my medication. I will actually get a bone density scan. I have no problem expressing what I need and I certainly have no problem telling people when they’re not meeting my expectations. Did I mention that I’m a lawyer?
But there’s something about rheumatology. None of the above ever works for me. I’ve had decent insurance for as long as I’ve had RA, and have lived in big cities like Chicago, Los Angeles and New York, cities bursting at the seams with great doctors. Still, the rheumatologists whose care I’ve been under have been remarkably terrible. And each bad rheumatologist was terrible in his or her own way.
This is the story of the worst of them.
Dr. One, the first rheumatologist I went to in New York, had an office on the Upper East Side, a plush suite of green carpets and brown leather chairs right off Park Avenue.
He walked into our first appointment, gingerly closed the exam room door, and, realizing it was time to smile, forced his lips to curl up at their ends in a way that looked like he was about to have a bowel movement.
“What can I do to help?” he asked.
I started to answer and he looked away. He’d uttered these words to appear more personable, not to actually be personable. It was an imitation of kindness. Still, he asked, so I answered.
“Well, I moved to New York about two weeks ago and I’ve been flaring really bad. The walking has been really rough on me. My hips are sore, which is new. My knees are always swollen but in different ways, so my legs aren’t the same length. I actually fell going up some subway stairs.”
“Uh huh, uh huh,” he mumbled.
“Get up here please,” he said, pointing at the exam table. He was holding my mortal enemy, the reflex hammer, in his right hand.
“Doctor, I know there are certain things you need to test, but can we hold off on the refle . . . AAAAAH . .
Too late. He’d gone for it.
As my foot jerked up my knee clenched. It was too swollen to smoothly adapt to the way the reflex had made my entire leg jolt.
No reaction from Doctor One. No indication that he’d just caused me a great deal of pain.
“Lay back,” he commanded.
As I lay on my back, a position that had very little to do with the way I moved in my every day life, he bent my knees to my chest and then straightened them out. Grabbing on to my knees, he rotated my legs around my hip bones.
“Looks great,” he proclaimed.
He hadn’t heard a thing I’d said, and most importantly, he hadn’t watched me walk. Nothing about the lifechanging flare I was having had registered with him.
So instead of treating him like a doctor who could help me, I treated him like the middle man. The person who held the papers I needed to get my real care. This visit was the toll I had to pay to move on to the next step.
“Well, I’d love to try physical therapy,” I told him, my shoulders raised meekly, my head tilted to the side. I looked at him like I was sincerely in need of his guidance. A good act I’d perfected over time.
“Physical therapy, yes, I’d recommend that.” He was already writing out a prescription that read something like “RA dx knees 2x w.” I’d have to fill in the details when I actually saw a physical therapist.
“Let’s try that for four weeks.”
Fine with me. I’d have a new doctor by then.
“Doctor, do you mind refilling my prescriptions?”
“Prescriptions, yes, let’s do that.”
It seems to me rheumatologists will give you pretty much anything if you make it seem like it was their idea to begin with.
I rattled off my dosages and he scribbled away.
“Great. See you back in three months. Anything else?”
The prescriptions safely in my hand, I let go of my fake smile, and nodded my head “no.”
He moved quickly on to the next room. No one told me whether it was time for me to leave or if I had to see a nurse, so I quietly slipped out the front door, the noise of busy uptown Manhattan bringing me back to reality.
Over the next few months, I sat for the New York bar exam, had 40 ccs drained out of my knees, switched from Enbrel to Remicaid, and had nightmare-inducing experiences with rheumatologists affiliated with major New York City medical centers, who I’ll call doctors number two and three. Those stories are for another day. I have to warm up to them. They’re that bad.
Doctor Four, whom I really liked, the doctor who knew about knees and eyes, was my doctor for about two months. We hit a snag when I called her office three times to try to get her to call in my methotrexate refill. Each time I called I left a very detailed message.
She never called in the prescription.
When I called for the fourth time, several weeks had passed.
“What’s going on with Doctor Four?” I asked the receptionist.
“She’s no longer with our practice,” was the explanation.
“Was anyone going to tell me?”
“We’re just getting around to calling her patients.”
“Great. So who’s going to fill my prescription?”
“Dr. Five will. But he needs to see you first. Can you come in . . . let me see, in three weeks?”
I’d love to have continuity of care. But continuity of crap? That’s where I draw the line.