from bad to worse

I had to cut my visit with my friend short yesterday on account of intense nausea.

Not to mention anxiety.  it’s not as bad as it was, but it’s creeping up and that disturbs me.  I know this is triggered by the difficulties managing my GI symptoms and diet, and the concerns about having to wait so long to see someone new.  I tell myself that I can hang on, that I’m strong, and that it’ll get better but it’s hard.

I called the potential new GI back yesterday (through nausea-gritted teeth) and asked if they had a cancellation list.  No, they told me, but it’s ok to call every morning and see if there have been any cancellations that day.  “Are you sure I won’t be a major pain in your ass if I do that?” I asked.  They assured me that I would not.

I didn’t call today because it’s supposed to be ungodly hot out today and I need to rest from yesterday.  I decided today will be a rest, rehydrate, and try to “eat” more than 600 calories.  I set my phone timer so that I can drink a half a shake every hour, if I keep it up I should get in about 4 shakes today (I have to stop “eating” by 6:30 or the reflux is terrible).

But tomorrow,  I am going to call.  I printed out my reports, I have my hopefully soon to be former GI doctor’s notes from last year (not from this year but I can get them if the new guy wants to take me on as a patient).  I feel like so much is at stake here.  At the urging of an online friend from a patient forum over at Inspire, I tried looking into the motility specialist at another of the B.A.T.H.s in town.  Well, actually what I did was call my insurance to see what I would be charged if I saw someone at the other BATH that is out of my “preferred network” (more on that in a sec) and found out that for pretty much every procedure a GI doctor would do, I would have to pay $150.  Only an ultrasound, plain x-ray, and lab testing would involve no out of pocket costs.  So endoscopy?  $150.  Ph testing?  $150.  Esophageal manometry?  $150.  Great.  I can’t afford that.

I have “good” insurance.  If my current GI doctor did any of these tests, I would have no out of pocket costs.  That’s because my current GI doctor is in the “preferred network”.  The “preferred network” exists because my insurance is through my husband’s employer, which happens to be a monster health network that comprises two of the better known BATHs in the city and several smaller hospitals to the north and west of the city (but not to the south, oh no….never down here.  The proximal southern suburbs of the big old historic city are not wealthy like the proximal western suburbs – as for the north, I’m not sure what that’s about but the monster health network managed to worm their way in up there but not down here).  Anyhow, my husband is a researcher in a lab that is part of one of the hospitals in the monster health network, and as such, he can only choose an insurance plan that has this “preferred network” shit, where you pay a lot less for going to doctors and facilities in the monster health network.

Sounds just fine, although certainly nicer if you don’t live south of the city, except that I have to see what I call “very special specialists”, and these are hard to find.  Some of them just don’t exist in the monster health network, for example, they have no autonomic neurologists in their network. They had one guy who was just starting out, but his mother got sick and he took an indefinite leave to take care of her.  The monster health network has exactly TWO motilty specialists, both at the same practice.  I see one (my current and hopefully soon to be former GI doctor), and have tried to transfer to the other but was denied that privilege by the office management.

Which leaves me very much shut out of getting the help I need.

I woke up this morning with the anxious chatter in my head again.  This is the second day of that, I hadn’t had this for a few weeks and I really thought it was over.  But I guess not. I think for a while, I’m just going to be extra susceptible to excessive anxiety during stress.  Unfortunate, to say the least.


Waiting for an authorization to continue my pantoprazole.  You’d think this would be a pretty straightforward thing for the GI doctor’s office to process, wouldn’t you?

Apparently not.  I called Tuesday.  It’s Thursday and still nothing, not just no authorization but no communication from them about whether they need more info.  So yeah, I’m gonna be that end of the week call, a little pissy, a little demandy.  Because they can’t get their shit together?  Not sure what the reason is.  I do know that this method – where the insurance tells the pharmacy, they tell me, I tell the doctor, and they need to then tell the insurance who needs to tell the pharmacy who needs to tell me – doesn’t work so well.

Kinda feels like this, and I’m Harpo, there in the middle, unable to stand up straight on my own all through it:


Sometimes I think I need the affective equivalent of the Mac OS spinning pinwheel or the Windows hourglass to use when I am in one of those situations that taxes my resources way way way beyond their capacity.  A message that says “This person has become unresponsive.  Do you want to wait or force quit?”  Or in the case of yesterday’s dealings with the insurance company and my primary care’s office/billing coordinator, “A fatal error has occurred.  Out of patience.  Shutting down.”

It would spare me the pain of having to try to explain what I’m trying to explain while also trying to explain my processing.  Which I will do.  At length.  Because, to continue the computer analogy, I have a somewhat quirky operating system courtesy of my very dysfunctional upbringing.  I’m like the old Dell in the corner, the one with all that memory but which has an old crappy processor and is running Windows Vista.  Sure, I have some really cool programs but if you tax my resources by opening up too many browser windows running all kinds of flash, I have nothing left for the simple operations like switching tasks appropriately or, oh I don’t know, being able to handle your choice to insert some clip art into a Word document.

Yesterday was a very taxing day.  It’s been a taxing week, with a long prodrome.  This week, I had a conference way out in the Western part of Northeast State that my boss, when she was feeling pissy with me back in March, basically insisted I go to.  Then Wednesday through Friday is another conference, which I am presenting a nearly 2 hour workshop/lecture at.  And next week is another conference.  On top of all of this, I have a few fires that keep popping up at work…last minute “OMG” type stuff that has to get done or at least considerably started now now now.  Oh and all the normal stuff that I do for my job too.  I am doing all of this juggling on between 850 and 1100 calories a day – 1100 is a GOOD day and is only accomplished with significant time, effort, and on days when I’m out of the house, extra weight because wherever I am going, I have to bring my own food or run the very high risk that I will have nothing at all to eat.

This does not make for a happy, well adjusted set of responses to stressors.

So when my health insurance company called me after part one of the week’s three day conference to tell me that oh they changed their minds (again) and I  can’t see my primary care as a primary care because my doctor’s office either can’t or refuses to bill as a primary care for me, I was not in an ideal position to handle that.

I’ve been dealing with this particular issue for months.  I have several pages of typed notes.  And among all of it, the one person I have NOT been able to connect with is my doctor’s billing/office manager.  I left her a message a few weeks ago asking, as recommended by the insurance company, if she can tell me whether my primary care CAN bill as a primary care with this insurance company. She called back….oh it was a few days later I’m sure, and left a message that did not at all answer my question.  She answered a different question, the one the insurance company always starts with, and which I know from miserable experience that you have to press the largely not very with it people who you first get on the phone when you call Big Crappy insurance to get them to even understand what you are asking.

Here’s the background on the plan and the conundrum.

  • My plan has two tiers.  There’s what we can call the basic network of providers and a preferred network of providers.  All of them are in Big Crappy Big Shot insurance network, just some are also in Big Ass Teaching Hospital Preferred Network too – this distinction makes the two tiers of coverage/billing/copay.
  • If you see a specialist in Big Crappy Big Shot network who is also in Big Ass Teaching Hospital network, you pay $15 as a copay.
  • If you see a specialist who is just in Big Crappy Big Shot network but NOT at or affiliated with Big Ass Teaching Hospital, you pay $40.
  • Moreover, the plan I have does not REQUIRE a primary care, but it does allow it.  A primary care in Big Crappy Big Shot network can bill as such and can therefore charge a $15 copay for primary care visits.  And, trivially (from a logic perspective) a primary care in Big Crappy network who is also in Big Ass Teaching Hospital network can charge a $15 copay because even if they are billing as a specialist and not a primary care, it’s only going to be $15.

Ok.  Got it?

So my doctor is in the Big Crappy Big Shot network and is not in the Big Ass Teaching Hospital network.  I consider him my primary care, he considers himself as my primary care, and he is who I see for my primary care.  He does have a double specialty but in my state with the primary care shortage, the doc who you see for primary care can have a specialty that is not traditionally one of the primary care specialties.  I double checked this with Big Crappy Big Shot healthplan in one of the very early phone calls.  So, I should, theoretically, be able to see my guy as a primary care and have him bill both the insurance company and me as an in Big Crappy network primary care.  I.e. I should have a $15 copay.  And yet it keeps coming to me as a $40 copay, suggesting that he is billing as a non-preferred specialist.

A reasonable question here is does my doctor not have a primary care contract/privileges with this insurance company or is there just some mistake in how it is getting processed in the billing cycle.  What the insurance company keeps thinking I am asking and which I have to break through every single time we talk about it is “what is my copay to see a specialist who is in Big Crappy but not in Big Ass Teaching Hospital network for a specialist visit?”  Why the fat frickity frick would I be asking that?  That is easily answered.  It is very clear.  I would not spend hours trying to clear that up.

The insurance company tells me that the bills coming in from my primary care visits to this doctor are coming in from this doc’s office coded for specialist.  Hence the $40 copay.  “Ok, well, can they bill for him as a primary care in your plan?” I ask…and I have to ask it alot since I’ve been through three rounds of laying this all out, then getting to the point where I can ask that question, then told they have to research it and call me back, then called back with an answer that either isn’t an answer or, as I said, isn’t an answer to that question.  Yesterday, I spoke with someone at Big Crappy who generally gets the issue and who I have to spend far less time setting it up for.  She tells me that I should call the doc’s office and find out if they just don’t bill as a primary care.  “Does he have a primary care contract with you?” I ask.  She doesn’t know, provider services would but I can’t call them.  My doctor’s office should know this, she tells me.

So back to the doctor’s office and the billing manager.  I left this question for her a few weeks ago.  She called me back a little while after I left that initial message.  Instead of answering my question about whether my doc can bill as a primary care in Big Crappy Big Shot insurance, she says in the voicemail she left: “Your insurance doesn’t require you to have a primary care.  The reason for the $40 copay is that if you see  a specialist who is not in the preferred network, it’s $40 because you have a tiered plan.”  Ah, so she answered the dumb question.  I did not blame her for the dumbness, because I know that the folks at Big Crappy will assume that any question about copays is THAT question about copays.  I call her back that day and I get her voicemail.  I was on a short break at a conference (yes, another), and so I had to speak quickly and concisely.  I thanked her for calling them and explained that unfortunately Big Crappy didn’t answer the question I actually had, which was etc. and yadda yadda and whatnot.  I wait.  She did not call me back.  This takes us to yesterday.  Yesterday, the Big Crappy people follow up again telling me that all of my bills from the doc in question are being submitted from his office as specialist visits, not primary care and that I need to ask the primary care’s office about whether he can bill as a primary care with them.  Big Crappy tells me that the doctor or his billing manager should know this and if they don’t, they can call provider services.  Big Crappy insurance gives me the provider services number too.

So I call the office manager yesterday.  I leave another message.  I sound brittle, because I’m trying really hard not to sound as infuriated and frustrated and just plain EXHAUSTED as I am.  I realize as I am leaving this message that maybe the reason why she hasn’t replied to my clarified question that I left her a few weeks ago is that she might have been on vacation or out.  I call the main number and ask.  “Oh she’s been in and out.  I’ll tell her you called.” the secretary tells me.  “Uh, ok.” I say, realizing then that this means the billing coordinator has just been blowing me off, probably assuming she answered my question and not interested in re-answering it or explaining it.  So I add “can you let her know that I did get her message but I did have a follow up question and that’s what I’m calling about?”  Yes, says the secretary.

The office manager calls me and from the start, she’s got a chip on her shoulder.  I try very very very hard to work with her, but it is clear that she feels that she has put in more than enough time on this.  As she is explaining it though, it’s clear that she’s still answering the wrong question.  So I try to let her know, and believe me, I try gently, that I appreciate the effort but that I think the insurance company didn’t understand the question.  She says that my doctor can be a primary care with my plan, but that with my plan, I don’t NEED to have a primary care, and that she only has one provider number for my doctor.  I say that I know that I don’t have to have a primary care, but I can have one…and say “the problem is, there’s a difference between ‘need’ and ‘can’ here…” and I was going to finish that sentence with “that the insurance company seems to overlook when they are answering questions about primary care for this plan” but she cut me off (about the 5th time she interrupted) and said “Oh well I’m sorry that my understanding of the English language is so bad that I apparently don’t know the difference.”

Boy, that escalated quickly.

There is just no need for that sort of shitty attitude.  I don’t tell her this (5 years ago, I would have).  I say “It sounds like you are offended, and I think you think I was insulting you – is that accurate?  Are you offended?”  “Yes” she said sulkily.  “It really wasn’t my intention.  I don’t think that you don’t understand the difference, I think the insurance company is playing games with words here, and I just need some help breaking through that.”

I think I deserve a fucking medal for being so god damned nice about her shitty attitude.  And mind you, this is on a grand total of about 200 calories at that point for the whole day.

So I’m still processing this shit.  I just really don’t know how to proceed or where to file this away in my brain so that it doesn’t alternately piss me off and distress me greatly.  I need my primary care to be a part of my team, on my side to help me manage elements of living with an evolving, chronic illness.  It’s already tough enough that the systemic barriers between doctors’ offices and health care networks, on top of the historic culture of medicine, actively prevent collaboration between care providers.  Add to it leaving the patient out to hang on dealing with the insurance company and billing and you’ve got something that is just so unbelievably toxic.  While I process, I think I need to hang up the “fatal error” sign, spin the pinwheel, and just let people know that all of my resources are otherwise engaged so please don’t ask me to open up another tab in facebook or you’re gonna get blue screened.

over billing and underpaying

Last week’s mail brought some unpleasant surprises.

Surprise 1:  A bill from BATH for PT/OT.  Which I paid, in person, during therapy.  Which they already tried to double bill me on once and which I already took the time to call them about.  No date of service on this one so I’ll get to start off with wrangling that info out of the complete, blithering morons who work in their billing office.  This is the 3rd time this particular BATH has tried to double bill me.  Both previous times were their error and I am 100% sure this one is too.

Surprise 2:  New dentist sent me a bill.  For what?  A filling it seems.  I compared the pay out from my insurance and what my payment was to be.  Paid that.  Yep.  And still this mystery bill.  So I get to call them and ask wtf?

Surprise 3:  My husband was sent a request for justification from an outside review agency about “medical treatment” I received in October.  Labs, to be precise.  In addition to alerting me that my insurance company would like to find a way to squirm out of paying for these labs (and, I later learned, for the PT I got in December/January), the letter was all shitty and started with “this is your SECOND notice”.  I called and lit into them, starting with “what is this, 1950?  If you have a question about MY healthcare and MY health, you ask ME.  You address your correspondence to ME.  Not my husband.  I am not a minor.  I am not mentally incapacitated.”  That settled, I know get to call my health insurance company today to ask wtf too.  Fan-frikking-tastic!  One of the things I am interested in knowing is whether they would prefer a person with EDS and chronic pain simply be treated with addictive narcotics for pain rather than attempt to seek healthier alternatives to pain management.  Because that is why I went to PT.  If they deny this claim, I am going to raise 9 kinds of hell.  My state legislature has recently made significant attempts to limit access to narcotic pain medication in a well intended but, I think, ultimately misguided attempt to reduce abuse of prescription drugs. I am pretty certain they would be interested in hearing about how my insurance company is effectively pushing that option like a corner crack dealer.