Well, in my own little mind, anyway.
I feel a little bit badly about it, but I know shortly I’m going to have to leave the doctors I am with — not because of them, but because the hospital network they are tied to is so horrendously managed that I’d actually imagine hiring in an outside consultant would help. And anyone who has ever seen a “management consultant” (or workflow, or procedural, or whatever) at work would know how it’s far more likely they’ll screw up the way things are done. But I think this health network’s management had to think and long and extra hard about how they could make this the most excruciatingly slow and cumbersome experience for doctors, patients, and insurance companies working with them.
The kicker is, the doctors are decent. I wish they’d turn the damn “doctor filters” off sometimes and trust a little bit more that I might actually have been present through the entire course of this train wreck and might have some actual, factual insight into the chronology and behavior of things that are going wacky, but a larger number there seem more likely to hear at least some of it. (And maybe that’s still a problem, but…)
There’s no way, though, that I can take the management making their jobs harder and making me jump through extra hoops simply because otherwise the paperwork is confusing for the system. I’m already very sure that I’ve been denied certain services because the hospital network decided my insurance wouldn’t cover it — and my insurance does. It’s just that they can’t be bothered to check and send the paperwork to my insurance.
The problem is, even if the management is better elsewhere, it doesn’t mean the care is — but either way, it’s busted. All I know is right now I’ve got a lot more confidence in my ability to determine what’s a problem now and what isn’t, and what the past can tell me about what’s on the horizon than I do in the medical profession’s ability to do so.
It’s just brutal to start over. Again. I mean, it’s brutal to try to find ways to make things work and be meaningful with another step down in functionality on my part — and it’s crucial to do so. And it’s brutal to start over with new doctors who imagine that this is a case just like all the others (an aside: I know this is complicated and not a usual situation I have going on. I am not 100% sold on the idea that this is something unnamed, unrecognized, or unmanageable in some respect. I know that this is uncommon, maybe even rare, but I refuse to believe I’m that damned special. It’s easier to believe doctors are chalking what they don’t know up to a magical status. Sorry.)
It sucks to explain it to new doctors, who’ll hit you (again) with the same tests (again) with little result (again). And then they’ll say, “Do you have any stress or anxiety?” And I roll my eyes and they say, “Well, you know what it looks like, right?”
No, I’m a frickin’ idiot. Of course it looks crazy, mainly because there’s pages upon pages of my ESR, TSH and CPK that are all lovely and normal. Sure, there’s weird bits, but since they don’t actually form a diagnosis when you pull every third consonant and first vowel out of the names the abnormal tests, we can’t figure out what it is.
But then they’ll see something and panic. Usually something that I tell them isn’t worth panicking about. Let me share that they don’t necessarily appreciate it when they say “You aren’t having a heart attack and you haven’t had a pulmonary embolism” and I say, “No shit. I could have told you that and been out of here hours ago.”
Or the lovely statement: “Well, it doesn’t look like you’re going to die any time soon!” Um, wonderful. Am I going to get a shot at living before the Reaper comes in the far future?
Any snarky answer (and boy, it’s haaaaaaard to hold back on them) and they go in to the “how important it is to make the most of every day” speech.
I KNOW. That’s what I do. I’ve been doing that for years, and I realized that probably long before many of these dorks were practicing medicine. That’s why I keep putting up with this bullshit. That’s why I haven’t lost hope. I know that if they could see, they’d probably have a hard time reasoning that sometimes the most I can make out of the day is a walk on the treadmill, a shower, and loading the dishwasher (by the way, loading the dishwasher ought to be a measure of disability — it is one thing that every last person with something chronic says is a living hell, but no one can really say why). Sometimes I can do more than that, often enough, it’s a struggle. But I do it, because I need to — and at the end of it all, however it shakes out, I can say that I always tried even if the medical profession tended to flake out on me periodically.
At this point, it’s just crappy because where ever I head next, it’ll be more of the same. I just hope in lesser amounts than I am expecting.