Wednesday, September 05, 2007

Orencia, we hardly knew ye

I went to the rheumatologist yesterday. I love my rheumatologist, but I hate going to see her. There are three reasons for this: I always cry, I have to get a battery of labs, and the bills. I have insurance, but of course they refuse to pay things left and right, so I spend the whole visit in a state of anticipatory distress. The aforementioned lab extravaganza seems to be one of the insurance's favorite things to not pay, so there's the added pre-bill stress on top of the regular I'm-going-to-get-yet-another-incompetent-phlebotomist stress.

Then there's the crying. I don't really cry a lot these days. But whenever I go to the rheumatologist I end up tearing up. First of all, my doctor seems to care, which makes me horribly uncomfortable. I want to have a business relationship with this person; the insurance (or more likely, a little bit the insurance and the rest, me) pays her, and she provides a service. But she seems to feel bad for me. It's not terrible, but this, along with the next thing, is a deadly combination.

The second thing is simply the fact that, stepping out of my protective self-involvement bubble and going to see her brings into sharp relief just how awful this is. It's putting salt in the wound. Hell, it's rubbing, salt, lemon, and vinegar in the wound and then leaving it to marinate for a few hours. Even when I do think I'm having a good day, I'm forced to admit that, yes, all my joints are swollen and yes, they are all tender, and yes, they all hurt, and I can't stand for any length of time, and I can barely walk (she was astounded a visit or two ago that I was able to walk a few yards from the elevator to my desk at work), and I haven't been able to put my own shoes on for months,--something so intimate and humiliating that I somehow manage to ignore each morning when my husband does it for me, but at the doctor's office there is no ignoring.

Here, I'm forced to discuss the fact the Orencia is not really working. Yes, it helps a little, and I can definitely feel it when it's time for another dose--like right now. A dose which I have not scheduled in light of the "Surprise! You owe us four thousand dollars!" missive I received not long ago. I'm not the kind of person who just has four thousand dollars laying about to send to the good people at the hospital (for whom, of course, everything is DUE NOW), both because I'm big fat failure and can't manage my finances properly, and because I simply don't make enough to both pay these gigantic bills and my other luxury bills like electricity and mortgage. So here, I am forced to confront the fact the Orencia isn't cutting it, and to talk about my massive bill (because of course, she's curious as to why I haven't scheduled my next dose).

Here, I am also forced to discuss the fact that the fibromyalgia is back. In short, my body has gotten so screwed up once again from being in constant pain from my joints, that my pain threshold is out of whack and my body, in its infinite wisdom, has decided that the best way to deal with this is with constant pain from soft tissues, more fatigue, and even less sleep. This means that I am in terrible pain in every single joint of my body, and in agonizing pain everywhere that's not a joint. Brushing against anything hurts. I yelp when my husband accidentally touches my shins when he's putting my shoes on. Sitting up hurts, but of course so does laying down. Wearing clothes hurts.

Here--last but not least--, I am forced to admit that I'm (no big surprise) deeply depressed and that I wish nothing more than to die. She tries, unsuccessfully, to convince me to try to get treatment again, which seems pointless to me.

She suggests that we stop the Orencia and switch to Rituxan, which works, she reminds me, by destroying my B-cells.

(I have, once again, the brief "Don't I need those?!" panic moment).

She assures me people at her office will work with the insurance to make sure it's covered. But people from her office already worked with the insurance to make sure the Orencia was covered.

She suggests I talk to patient financial services. I have already dealt with these people (in a previous "Surprise! You owe us two thousand dollars!" episode, when another insurance company decided I had not been diagnosed enough, in spite of having been diagnosed with RA by three or four doctors over the course of several years, and thus, my treatment was an optional luxury item, a pair of medical Manolos, if you will). Their help consisted of dutifully reminding me that the full sum is DUE NOW and sounding intimidating.

In an effort to not make the Giant Bill situation worse, she sends me off to the lab with the fewest labs she can get away with. This means it's two or three vials of blood instead of the usual two-gallon milk jug plus urinalysis.

And then, because this is how I repay kind professionals who show compassion towards me, I wonder how many of the labs she normally orders are actually needed.

2 comments:

Anonymous said...

Does typing hurt?

Sporks said...

Often, but when things get really bad and I'm stuck at home, typing is about the only way I can keep from being too isolated and going nuts.

If I can't type, that usually means I can't hold a book, or walk, either, so I spend the day in bed and listen to the radio.