Health Insurance and Other Stuff Update

I wasn't planning on updating this anymore, but @planetmoney retweeted a post from a couple of years ago that touched on my dealings with insurance and the health care system in general. I've gotten a couple of questions as to where I am now, so here's the update:

I'm still sick. Rheumatoid arthritis is a chronic condition; there is no cure--you just manage the symptoms. So I still have routine visits to the doctor and lots of blood-drawing.

But, I'm doing better. Some time towards the end of 2008, some of the medication I'd been taken for years (methotrexate) suddenly started working; it wasn't as if I suddenly could hop up and down stairs, but it helped, and it was an opportunity to start moving a little again. Luckily, methotrexate isn't one of the thousand-plus-per-dose medications that I'd tried; I just take ten pills once a week, and no trips to the hospital (and the costs that come with them) are required.

A little bit before this happened, my mobility and balance had deteriorated to the point where I was barely moving much at all, even when the arthritis wasn't flaring up more than usual. This, combined with some terrible stress at work, spurred me to drag my sorry ass to the gym to try to get a little activity. Exercise was difficult in and of itself, and it's a long story--maybe for another post, if I start posting irregularly again--but the combination of methotrexate kicking in, and being able to move again did wonders. I got on antidepressants again. I lost 80 pounds in a year. I still have terrible days, but it's not the norm. I'm still in pain, but it's much less distracting.

The insurance situation is about the same. A little better, as my current set of medications are cheaper than the alternatives. A little worse, as my workplace decided to axe the plan I was on, and the only remaining plan available to us is a "consumer-driven" high-deductible plan which tripled our copays/deductible and reduced the percentage of services covered. And since my husband and I work for the same employer, we're not allowed to cover each other as dependents, as spouses often do.

Thanks for asking.

Brave new...something

I got a phone call from a collections agency today; they were demanding (because collections agencies are not huge on the nice) that I pay them right-now-exclamation-mark for a medical bill I'd either already paid about half a year ago, or was new enough that the hospital hadn't even billed me yet (both transactions had similar balances, and figuring out which it was was part of the problem).

That's not very interesting. What's interesting, at least to me, is how much of my life is online.

Because this phone call was a complete out-of-the-blue surprise, I didn't have any documentation of dates of service or previous bills or any other paperwork with me. But I was able to gather all these things by just looking at a few places online.

I was able to get dates and amounts already paid from Mint, and further details on specific transactions through my banks' online sites. I got dates of doctor's appointments from Google Calendar, and further details on the timing of my MRI from Twitter. I was able to narrow down the end of my Orencia treatments and rheumatologist visits from this blog.

What's ironic, though, is that the hospital's online billing site, the insurance carrier's site, and the collection agency's payment site were all completely useless. They are annoying to use, their data is outdated, and they have no useful searching to speak of. They frequently error or time out, and the interfaces look dated; you're generally better off calling these companies, even considering how terrible most over-the-phone customer service (both in terms of competency, and, you know, service) is. These companies would do well to learn a thing or two from these flexible (and free) services.

In the end, we figured out where exactly the bill was coming from, and everything ended well. But that's not very interesting, either.

"Have you got anything without Spam?"

So, reading a bit about Rituxan, the new drug my rheumatologist wants me to start on, makes me feel like I'm in the Monty Python Spam skit. Except replace "Spam" with "death". Which is less funny.

As I make my way through various arthritis drugs, the side effects get nastier and nastier. I'm sort of scraping the bottom of the barrel, here; I've had this goddamned disease for what, eight or nine years now, and we're still trying to find something that helps. And so, we come to Rituxan.

"Some people who received rituximab experienced severe reactions to the medication. Some of these people died within 24 hours after they received a dose of rituximab. Most of these deaths happened after the first dose of rituximab," is the cheerful opener of the NIH page on this drug.

"Rituximab has caused severe skin reactions. These reactions have caused death," it adds (there's also dire warnings for people being treated for non-Hodgkins lymphoma, which luckily doesn't apply to me).

"Some people who received rituximab developed progressive multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death or severe disability) during or after their treatment."

The page leaves me with this final admonishment:

"Talk to your doctor about the risks of using rituximab."

Ya think?

Except, of course, that there was no talking. I didn't read about it until after speaking to the doctor, or I would have certainly had some more questions.

"There's been more reactions to this medication than some others," the doctor told me. "So we're going to keep you at the OIC a while longer so we can keep an eye on you."

Which is great, except the people at the OIC are jackasses. Seriously. Every time I call to schedule an appointment, the idiot scheduler girl makes me repeat my history to her; what disease do I have? Who referred me? And this doctor, she is located where? And so on, despite the fact that they have these newfangled "computers" now, that show you patient information when you book them, and I've been dealing with the OIC for months. After I have negotiated the pit of stupidity which is the scheduler girl, I show up, on time, every time, only to have to wait an hour or more because they're always double-booked. Last time I was there, I spent the entire afternoon in a room they use for drawing blood and administering injections; all the actual treatment rooms (you know, the ones where they keep the oxygen, and trained nurses patrol in case you're having a tiny death-inducing reaction) were booked.

"You might consider scheduling your infusion on another day of the week," the random nurse who put the IV in suggested.

You might consider not double-booking your motherfucking facility, I thought. But I just smiled.

It's like flying Southwest. They should just give us plastic numbers and have us trample each other as we race to the available rooms.

Then, there's the lecturing. Because I've already had a reaction to a similar arthritis treatment, my doctor has ordered that they keep me a bit longer--a couple of hours, as opposed to the usual fifteen minutes. This makes the nurses at the OIC cranky. Which is perfectly understandable. After all, no one seems to actually read the doctor's orders before getting started and it comes to them as a complete surprise every single time I'm there (this makes me somewhat uneasy about the mystery solution they pump into my veins, but so far so good). Also, because of the aforementioned double-booking and scheduling-girl idiocy, they have more patients than they can handle. So I get lectured.

"You know, we don't normally keep people this long," nurse du jour will start out (apparently chemotherapy and other IV treatment is a very drive-through-y affair these days). And it goes from there.

"We never agreed to observe you this long," the last nurse groused at me. "That's just something your doctor decided."

Yes, well. Doctors and their crazy "deciding" and giving doctors' "orders". Truly a tool of The Man, always telling nurses what to do.

(Also? Ask me or any of the other patients here how much we care about inter-hospital politics or power struggles between your departments. Come on, I dare you.)

At any rate, this means that my observation period isn't really all it's cracked up to be. The first time I was there, a nurse with a chip on his shoulder the size of Texas simply evicted me from my room (ah, fancy room with oxygen tanks, how I miss you) and had me sit in the waiting room for several hours, with the IV line flopping off my arm (the actual IV drip got to stay in the treatment area). Lately, they've just been keeping me for a bit and then deciding I'm done. So at least I get to go home, where I can be not-observed while playing WoW instead of being not-observed in the hospital waiting room.

Anyway, this whole "Spam, Spam, Spam, death, Spam" thing is distressing. I know I spend a lot of time wishing I was dead, but still, I don't always wish I was dead. And if nothing else, I'm just a contrary person; I might want to die, sure, but I'll be damned if some lame-ass medication is going to be what does me in--when I die it's going to be on my terms, or by hilarious accident; not as a side effect. I'm also worried about the "severe disability" part; maybe it's my personal vanity (because I cherish my brain above most else) but the idea of not dying but having my brain turn to mush instead is terrifying.

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.

Quick RA update

So I have this whole long thing about my adventures in Oncology, but I can't seem to buckle down and actually write it. For the time being, I'll let you guys know that I'm doing ok; I think the Orencia is working. It's a little disconcerting because my doctor is out of the country for the rest of the month. So far so good, though. More later.

Up next: Orencia (part 2)

I don't know why I'm so freaked out about this, but I am. I guess because of the way it came about. Yes, I know I'm lucky to have a supportive husband, and insurance, and a good job, and all that. I really do know this. I'm still freaked out, which puts me in a cranky mood.

So, for the gory details. My infusion takes place tomorrow, over a couple of hours. Tonight, I'm supposed to take four times my usual prednisone dose; this will make it so I can't sleep, so I'm taking the day off tomorrow. Once at the hospital, they'll give me yet another dose of steroids, and then the medication itself, intravenously. This is the part that takes a couple of hours.

When I used to go in for Remicade, I'd bring my husband's laptop (I didn't have one of my own at the time) and watch a movie. My laptop right now is sort of huge, though, so I don't know if I'd be able to hold it long enough to watch anything. Also, I may be too exhausted; it wouldn't be too bad to just sleep through the whole thing.

I'm worried about having an allergic reaction. This is what happened with the Remicade; I was doing great on it, and then, out of nowhere, I had an allergic reaction--couldn't breathe. So that was that. If this happens again, there is, I think, one other alternative, and then we may be out of options again, until someone comes up with a new drug.

I want to be able to not have to carefully weigh the pros and cons of having a drink, because walking to the bathroom (not to mention sitting), is such terrible pain.

It seems stupid to have my husband come sit with me for hours just because I'm freaked out. I can't in good conscience ask him to just hang around and twiddle his thumbs for the whole day. Either this thing will work or it won't; either I'll have a reaction to it or I won't; there's nothing that his being there will change, I guess.

The drug itself is pretty scary--"it works by blocking the activity of T-cells". I suppose that's no scarier than anything else that screws with your immune system, but still, it's odd to have your doctor recommend this--my gut reaction was, "T-cells? Don't I, you know, need those? *flashbacks to Pedro going over his T-cell count in The Real World*" Of course, my last drug was TNF inhibitor--and I mean, why would you possibly need the stuff that fights tumors in your body.

Side effects are the usual: infections, increased cancer risk, etc etc.

I've spent long enough on this for now; we'll see how stuff goes tomorrow.

Up next: Orencia

So, I have been avoiding the topic as much as I can, but it's arthritis time. I've been in a pretty bad flare for the past month-plus. I don't have the energy to go into detail about all of that--you can browse through the archives if you're curious as to what that's like.

I've also been waiting to get approved for a new treatment. First, my doctor's office took their sweet time to get the approval process going. Apparently there is one single person in the whole rheumatology operation at my hospital who is capable of doing this. And she was out of the office for a few weeks, so it took about a month just to get this going; after she came back, I had to chase her down because no one was calling me (as promised), and then had some trouble getting my calls returned (I can only imagine how swamped she was if she's the only person handling this type of thing), which added another two weeks or so.

On Thursday, I had to leave work early because the pain was so bad. On Friday, I was barely able to walk in the morning, and spent most of the day laying in bed. Apparently some time Thursday afternoon, the Girl From Rheumatology (sounds like "Girl From Ipanema" in my head) called letting me know that I'd been approved and the OIC (Oncology and Infusion Center) would be calling me to make an appointment. OIC called twice on Friday, of course, and I didn't even notice it, what with being in a pain-induced haze most of the day--not that I'd be able to do anything about it, since I couldn't hold a phone or dial during business hours.

I returned their call today morning, and got bitched at for not answering.

You'd think that people dealing with patients suffering from cancer and other diseases disruptive enough that require, you know, poison to be pumped directly into their veins in order to function would be a little more understanding.

I would like to take this moment to deeply and sincerely apologize to every receptionist whose appointment-scheduling has been ever-so-slightly disrupted by my inability to overcome the agonizing pain that keeps me pinned to the bed so I can sprightly hop on over to the phone and answer by the second ring. I have been truly selfish and thoughtless.

After sheepishly taking my well-deserved talking-to by the OIC Star Scheduler, she informed me that since I hadn't called them back until today--and really, this is my fault, I should've had the oversight to add more business days in between Friday and Monday--, she had gone ahead and scheduled me for an infusion. On the eleventh. That is, the day after tomorrow.

I'm lucky enough to have understanding bosses and to work for a fairly nice company. I shudder to think of what happens to the other poor bastards with this disease when they suddenly have to block out three to four hours in the middle of the week in the middle of a workday on two days' notice.

One last, additional problem with this whole thing: this week, of all times, my rheumatologist is out on vacation. She had mentioned she wanted me to dose up on prednisone before the infusion, but I don't have the exact dose or instructions. OIC was unable to provide me with any special instructions from my doc; her office is consulting the on-call doctor. Additionally, there may be other stuff (more meds plus observation), since I had a nasty allergic reaction to an infusion in the past. Hopefully she wrote this down some place accessible to the other people in her office.

I'm pretty freaked out and not too happy at this point. Will write more later about the medication itself and some of the things that are freaking me out about that.

Update time--
Glasses: the trapezoidification issue got a little better, but not much. I was being lazy about scheduling an appointment to get them fixed, but then yesterday morning my dogs decided to help me out by chewing my glassses up and breaking one of the lenses.

Cold: holy crap, I was sick with this BS for two weeks. Felt like death by the end, but I've been better this week, though I'm still sniffly from time to time. It's always a little stressful when I get sick every winter, because my immune system is not really up to par.

WoW: we've started poking our heads into Karazhan, which is fun. We're still hashing out guild/class numbers (hey look! we're recruiting!), but I'm looking forward to doing more stuff once we get this more settled down. And I'd just like to take this time to add my voice to the giant "WTF, Blizzard" being echoed by raiders everywhere.

This is the part where you non-WoWers can start to not care:

1) Lrn2math: before the expansion, WoW raids were 40- or 20-man affairs. After the expansion, new raids are 25-man. There is also one 10-man instance (Karazhan). You do the math. This is a nightmare for guild management. Also, Karazhan is where most guilds will spend the bulk of their time, because...

2) there is no "introductory" 25-man content. The two raids that were supposed to be entry-level content, are so unappealing and difficult that even the hardcore guilds (and I mean here, "average" hardcore, as opposed to guilds going for world-firsts, etc.) are either having trouble with them or have little incentive to even try them, because...

3) the risk vs. reward ratio is out of whack. You need massive consumables to beat fights that may have a large luck component, and the drops you get from these fights don't help you get away from the massive consumable use the next time you come back to fight the same guy.

Here's hoping that some of this gets fixed by the time we get there.

I'm sick!

But for once it's not the arthritis. I've got a nasty cold or flu or something that's making it feel like my brains have liquefied and are trying to come out my nose. It's all very bad. It's been about a week and finally I'm starting to feel better.

In other news, I finally got my glasses replaced, and since it's been so long since I wore them (and the prescription changed a little bit), everything looks off. I feel taller, and my monitor looks like /___\ instead of |___|. According to the people at my optometrist's office, it should wear off somewhere in between a few hours and a day or two, but until then, the monitor thing is driving me bonkers and making it pretty hard to work. Also, my husband amuses himself by pretending he's shorter or taller than he really is to try to trip me up.