Illness Part 9: Breaking Up

 "Can I break up with my endocrinologist?" I asked my primary care doctor, a General Practitioner.

He smiled, and said, "Well, you're the patient. You can do whatever you want."

That's patently false. I spend much of my time getting medical tests and otherwise jumping through hoops, so that my insurance will pay for things. I am not in charge. (But I should be, along with my GP.) In actual fact, my insurance company is in charge.

But, still, I was glad. When I started seeing the endocrinologist, my GP had said, "If anybody can figure out what's going on with you, she can." I looked forward to that. My body chemistry has been just not quite right all of my life. I have developed an aversion to hearing the word "should," as in, "...you should be feeling..." and, "...this should be working...", because often, that is not how I feel, and that is not how my body works.

After my thyroid was removed, my sister wanted to know what had caused it to be enlarged and covered in nodules. I told her, "Nobody seems to know, and they're not particularly interested in finding out." But I wanted to know. Something caused it. Should it be treated? Will it affect other things? So, my family and I were very excited to send me to a specialist, one who would figure it all out.

At my first visit, I went over things going back to my childhood. She seemed interested; she listened, and occasionally asked questions. But it soon became apparent that she was not looking for what caused the gland to need removed. Her entire process revolved around the fact that it was now gone.

Well, OK. It's probably hard to diagnose after the fact. I get that.

Still, any symptoms I had also were disregarded as irrelevant. Every appointment, I'd be handed a sheet asking me about symptoms, and I'd check box after box. Near as I can tell, no one even glanced at those forms. All that was ever discussed were my blood tests. When I'd bring up symptoms, I'd be told, "Don't worry. You're still adjusting. It will all even out eventually."

Ten years later I can say with conviction: it never evened out. Ever. (Illness Part 4: Symptoms) Through different medications, different doses, different protocols, I still have almost every symptom. I had them before the thyroid was removed, too. Obviously, there's something we're not looking at. I have become convinced that we don't yet know even what questions to ask, much less how to check my body. I just hear over and over about what "should" be.

Soon, I rarely saw the actual doctor, and just saw her physician's assistant. Not a deal breaker. I also rarely recieved eye contact from whoever treated me; they spent the entire visit, minus checking my vitals, looking at a screen and typing on a laptop. Years ago, this became standard. I don't know if the directions came from the AMA or the malpractice insurance or the medical board, but every single provider now spends their visit looking not at the patient, but at a laptop. They spend more time filling out forms to "prove" that they're treating a patient than they do actually treating patients. That annoys me tremendously. But, as I said, it's standard; I can't really get away from it.

I have listed the issues that I had even getting an appointment (Illness Part 5: Caring For My Health). It was just so exhausting, and gave me a bit of insight into the fact that the office ran exclusively on PROCEDURE. Again, not terribly unusual and not a surprise, but so aggravating. Every office seems to expect everyone in the outside world to know about and comply with internal procedures as a matter of course. This is a problem, because the layperson doesn't work in your office, so of course they are not going to know How You Do Things.

Now, actually being seen at the office, I had to deal with the office staff too often for anyone's comfort.

For instance, I had to be seen every month. To me, that means "roughly every 4 weeks" or "in 28 to 32 days." Not to the office staff; to them, it meant in 30 days, exactly. If day 30 landed on a weekend, the woman making the appointments would fuss and huff and talk about "getting back on schedule next month."

I once pointed out to her that my monthly blood tests were not 30 days apart. I was sent home with a paper, and I took it to the lab and got tested whenever it was actually convenient. Usually, I did it on day 25 or so, but it might be on day 15 or day 29. She looked at me blankly, like she did not understand the language I was speaking, and then gave me a long explanation of how I had to come in every 30 days EXACTLY "so the records will be accurate." The fact that when my blood was drawn seemed far more critical than when I walked in the door to discuss it with the doctor seemed to just pass her by. Finally I just ignored it and resigned myself.

Then one month, as I was leaving, I was asked to come back in exactly 30 days, and I balked.

"That's the first anniversary of my mother's death. I don't want to even leave the house that day."

"Oh, you'll be fine. Just take yourself out to lunch, or maybe go shopping."

I stood there in disbelief and stared at her. What I wanted to say is, "Oh, of course, a nice restaurant meal will totally distract me from the fact that my mother is dead." But I didn't say that. (In retrospect, I should have.) Instead, I said, "I would really like an appointment on another day. Can I come a day later?"

"No, no, no, it's thirty days. You'll be fine. How's 11:00?"

I wanted to scream, "It is not FINE. She is GONE. Don't you have a mother?" Instead, I got an appointment for 11.

It wasn't too many months later when I ran into an issue that she couldn't bully me through. The only appointment available in 30 days was at 8:00 am. The office is 30 minutes away from my home, and I had to pick up a child, a child who did not yet drive, from a class at 7:30 am. The class was 10 to 15 minutes farther away from my house, so if my child walked out on the very stroke of dismissal, and I had great traffic and luck with lights all the way home, I could potentially leave home at 7:45. The math simply did not work, especially during rush hour traffic.

I explained all of that, and asked for another day. No, of course, I HAD to be seen on that day, and that was THE ONLY appointment available.

"I WILL be late. I can't avoid it," I told her.

"Just get here as soon as you can," she said.

Fast forward exactly 30 days. I browbeat my child, with instructions to come to the car immediately at dismissal, to not stop and say hello or goodbye to anyone, just run out to the car. Eyeroll; "I will, Mom." And he did. I drove like a crazy person home to drop him off, then sped across town. I was, as promised, and guaranteed by the laws of physics, late.

"You're late," the receptionist huffed.

"I know. I told you that I would be. (This was literally the same woman who made appointments.) I had to pick up my son across the valley at 7:30."

"Well, I don't know if we can even see you now."

"When I asked for a different day, because I'd be late, you told me that you couldn't do that."

"The patient after you has already been called in!"

"OK, you gave her my time slot, so give me hers." 

"Her appointment was scheduled after yours!"

"So you said. You have two patients, and two time slots. You gave mine to her, so give hers to me."

"We can't see you if the patient after you has already been called in!"

At this point, I threw out any pretense of being polite. I raised my voice; I'm an actor. I can project. "I told you that today was not convenient for me. I told you that I would be late. I asked for a different day or time. I don't know why I'm here, anyway! I can tell you exactly how this appointment will go. I will walk in and say, 'I feel great.' She'll say, 'But your numbers are terrible,' and I'll walk out of here with a new prescription. I COULD DO THIS OVER THE PHONE."

She stared at me, then out at the semi-full waiting room, and said, "I'll see if we can get you in."

And just like magic, they could. It took all of 15 minutes for the entire thing, from being called in, to being seen, to being dismissed. I walked out of the office with the predicted new prescription.

That was the day I decided that I didn't want to go back.

"I don't ever want to speak to anyone but you about my medication," I told my GP. "If I'm sick, I can see whoever's available. But I don't want to discuss this with anybody else. Ever."

Well, I didn't quite get my wish. I've seen the Physician's Assistant repeatedly. Now, my doctor is going on a church mission out of state. Some day, he will retire. Maybe, by then, I'll be OK with that.

But I have never regretted breaking up with my endocrinologist.