What were you expecting?

It’s a Wednesday morning and I’m sitting on the floor of my apartment, documents fanning out around me to the point where you can hardly see the rug underneath. I’m making a timeline of all the doctors I’ve seen and all the diagnoses I’ve been given in the last seven weeks. It’s all part of the misadventure of trying to figure out what caused the pain on my right side that I woke up with weeks ago and which has intermittently returned since. I have another doctor’s appointment this afternoon, and I’m trying to make it easier on her and me to keep track of what the fuck is going on.

One of the first tests I got was a urine culture at an urgent care center. They told me I probably had a UTI/kidney infection. The rapid results came back negative, but, they told me, that happens sometimes, and all my symptoms were consistent with a UTI. So they gave me antibiotics. They called me a few days later, after an ER trip and a urologist visit, to say that I didn’t have a UTI. Okay: cross that one off the list.

But now I’m sitting here, this sweltering Wednesday morning, holding the document they sent me with my test results. I guess I never bothered to look at it – I heard, “You don’t have a UTI,” and I filed it away with all the other documents from those first few hectic days. But I’m looking at it now, and — like all the test results I’ve been given — it reads like a foreign language. “Mixed urogenital flora,” it says. I guess this means, somehow, “no UTI.” On a whim, I decide to Google it. And wouldn’t you know it? It doesn’t mean “no UTI.” It means it was probably a contaminated sample.

But no one bothered to tell me this. It seems like, these days, my doctors don’t bother to tell me much of anything.

In her book The Faraway Nearby, Rebecca Solnit writes:

You must be patient, must become a patient, must take up residence in waiting rooms, must learn to wait for experts and results, must grow accustomed to being laid out on tables and invaded, described in an unfamiliar language, and treated with methods that seem like illnesses and injuries although they are intended to cure.

It reads a little bit like a checklist to me. You must take up residence in waiting rooms, must learn to wait for experts and results. Yes, done. The night I needed to go to the ER, I had to go to two separate hospitals. I waited at the first one for an hour with my mom before we asked someone how much longer the wait would be. The woman we asked told us she of course couldn’t say for sure, but looked around, lowered her voice, and said, “The person who has been here the longest has been here three hours and forty-five minutes and they’re still waiting.”

I could not wait that long and I knew it. We went to a different hospital, one where we could make an “appointment” at the ER. There was a promised wait time of a little less than an hour, but we sat for a little more than two. All I did that night was wait. I waited for the urinalysis results to come back, but they forgot to send my sample to the lab and I never got any results anyway. I waited for painkillers. I waited for more painkillers. I waited and I waited and I waited. After I left the hospital I waited between appointments. I waited for results and in waiting rooms and on hold with doctor’s offices, I waited at the pharmacy and on the phone with my insurance company.

You must grow accustomed to being laid out on tables and invaded…treated with methods that seem like illnesses and injuries although they are intended to cure. Yes, those too. I was thinking of Solnit’s words while I stared at the ceiling during a transvaginal ultrasound. (They’ve now started using the slightly-less horrifying euphemism “internal ultrasound,” but I don’t feel that quite captures the experience.) The tech had a coughing fit with the probe inside of me. I mean “coughing fit” in the truest sense of the phrase – bent over and convulsing and all the while had one hand on the probe. When she was finished with the exam, she told me to stay exactly as I was, legs spread in stirrups, hospital gown pushed up too high. “Don’t move,” she said. She put the probe in a holster and left the room and I turned my head to the side so I didn’t have to watch the blood — my blood — drip down the probe. I stayed like that for a few excruciating minutes before she came back into the room (she did not knock, and why would she?) and told me to get dressed. Then: more waiting. Ten full days for an ultrasound report. It should take 48 hours, tops.

From there, I can check off the part where I grow accustomed to being described in an unfamiliar language. A line from the ultrasound report: There is a dilated serpiginous structure in the right adnexa best seen on the cine loop through the right adnexa in the sagittal plane, most consistent right hydrosalpinx (in a fusiform configuration with areas of focal dilation and focal stenosis).

Oh, OK then.