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.

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Dear old m.o.m

Narcotics and milk of mag was the recommendation. I wonder how many prescription drug addictions insurance companies feature in. Reasoning that they won’t cover the non-narcotic pain med but will happily let me get more percocet – that’s some bad medicine I say.
Could they be liable? Are you even allowed to sue an insurance company these days?

So, one week post op and doing good. One very interesting thing…I’ve actually had menstrual cramps that hurt as bad as the pain I was feeling one day after surgery. That’s one day after having my uterus and cervix removed, part of an ovary taken out, a ligament resected (cut up to get a particularly nasty endo implant out then reattached), and various other endo sites dug out of me. I wish I’d had a hysterectomy years ago. I really do. That’s a lot of years of horrible pain.

It’s snowing like crazy here. Still more to come. My husband’s safe at home with me though, having gotten two weeks off work on FMLA granted leave. Interesting, and quite irksome, thing about his leave – if he were taking this time off for me to have a baby, he’d have been able to go on short term disability time instead of it coming out of his sick/vacation pay. Outstanding, isn’t it?

rock and a hard place

Pain management is not easy when you have GI problems.  The choice is between NSAIDs which upset my stomach and narcotics which deaden my intestine.  I’m down to only a few percocet a day (I’m 5 days post-op so I think this is pretty good) but to manage the pain, I’m taking copious amounts of ibuprofen.  This AM I woke up to that old familiar epigastric pain – the sharp stab just left of the midline of my abdomen (about 2 inches below my sternum) and the hollow ache immediately below and through to my back.  I know that pain.  That’s gastritis pain.  Which is a warning that the ibuprofen needs to slow down or stop.

So what are my options?  Not much it seems.  Keep taking the ibuprofen and increase the stomach symptoms (pain, nausea, no appetite) or increase the narcotic and slow down my bowel, which leads to bloating right where I don’t need it, pressure, and straining to poop – all of which increases the pelvic pain and pressure.  I think the other options are take the narcotics but add a motility drug (I’m already taking a stool softener 2x a day) or switch to celebrex and tylenol.

However, I know that the insurance company will not want to pay for the celebrex.  I also worry that if I call and present these options to the surgical team, they are likely to bristle at my impudence.

sister act

Here’s an email I sent to my brother and sister on Saturday morning.

Subject: request (birthday)
Hi,
I know we have plans for my birthday, brunch. And I’m still planning to do it. But I might need help between now and then and the help might make brunch less of an option. Here’s my pitch:
My doctor has ordered a month’s worth of weekly IV vitamin therapy since I have a few levels that are low. While they are low enough that treating them might help me feel better, they might not be low enough for the insurance company to pay for them. They don’t have a protocol for how malnourished you have to be before they will pay. Plus, quite recently, my insurance company refused to authorize my arthritis pain medicine, a drug that is a lot like motrin but without the stomach destroying parts. They will now pay for 5 days worth of that pill a month – so I’m allowed to have 5 days worth of pain a month and no more unless I’d like to become addicted to a narcotic, which they will pay for. Anyhow, my point is they are fully capable of doing stupid crap like that, so as much as I’d like to think they’d pay for the IV vitamins, they might not.
And that brings me to my request. I’m going to get this, at least one or two treatments. If they don’t pay for it, would you be willing to pitch in some money toward it as my birthday present? No more than whatever you’d have spent on me anyhow. I have literally no idea what the IV vitamins cost but I cannot take feeling this shitty and if something as innocuous as vitamin treatments that would help, then I will absolutely try it.

My brother replied within 2 hours.  My sister called that night to see “what was up”, to tell me that she had a headache the day before, and to say that she figured if she had one I probably did too.  Anyhow, she did not mention the email.  Saturday was a wretched day for me health wise.  Sunday was not great.  Today is ok.  I texted her today.  She promptly called.  Ugh.  Not up for a call.  So we talked.  I mentioned that I might go in a little late tomorrow so I can get a blood draw, stop at the hospital to drop off the script for the IV fluids/etc because nothing was open all weekend to get going on this stuff.  She said “yeah, the vitamin thing.  Will your insurance pay for it?”  Ok.  So she got the email, and I was pretty frustrated to hear her ask me if I knew if the insurance company will pay for it.  The whole point of the email is that I don’t know and probably won’t know until the bill goes to them and they chew on it for a while.  “I don’t know yet,” I said.  Still nothing from her on my request.

I honestly have no idea if she is being spacey or if there is intent here.  Both suck, admittedly the latter sucks much more.  Anyhow, I emailed her later today with a forward of the original message and just wrote “Can you let me know?”  We’ll see how this goes.  Could be a bit of a reckoning coming up here.  She doesn’t need to pony up, but what kind of person doesn’t even acknowledge the request?  That’s some seriously childish crap right there.

change

I got three pieces of mail from my insurance company this week.  One telling me I wasn’t approved for the Celebrex I finally got my doctor’s office to order.  Then came a letter saying I was approved for the MRI the neurologist ordered.  And finally, yesterday, I got a letter telling me I was approved, on appeal/resubmit, for Celebrex, for 5 days a month.  I’m allowed to be in pain 5 days a month.  Unfortunately, my uterus, hips, knees, and ankles seem to have other plans.

I’m wondering if the PCP’s nurse, who processed both the failed and resubmitted authorization, has a clear notion of why I take the celebrex.  I don’t think she does.  Well, it might be more accurate to say I hope that she doesn’t.  My initial request was not frantic.  My follow up, nearly a month later when my period was about to start and I discovered that the authorization still had not even been submitted, was.  And it focused on my period.  Which is very painful.  This may be where the “confusion” came in.  But I’m disappointed.  Disappointed that she processed the initial authorization late.  Disappointed that she processed it only as for menstrual pain.  Disappointed that she processed it as being because “nothing else works” and not because I have a history of upper GI complaints that spans over 20 years.  Disappointed that she didn’t take even 2 minutes to listen to why I take to much pain medication, even though it’s all over my chart.  I understand it’s a big chart, even just the history that was taken in their office.  But that is why the 2 minutes of listening would have helped.  I could have mentioned the chronic joint pain.  In my last call to her, the one to ask her to resubmit, she told me that the doctor usually orders an enteric coated naproxsomething or another.  I told her I tried that and that the EC really doesn’t seem to help much with the gut.  So she resubmitted.  She was rushed, I understood.  They’re busy, I didn’t want to eat into their time.  I figured we had it squared away.  I should have pushed.

Honestly, the joint pain doesn’t respond terribly well to Celebrex.  The Celebrex does not take it away.  But it’s better than nothing.  And it’s better than advil or the other non-selective NSAIDS in that I can take it and it helps some and it doesn’t eat up my stomach, which is chronically painful and problematic despite eating carefully and taking 20 mg of protonix twice a day.  Lately, i.e. since July when my Celebrex stopped, I’ve been taking a whole lot of Tylenol.  Which also helps some.  Again, not a great drug to take in big doses.  On the plus side, I don’t drink. Not a drop, so Tylenol is not the worst thing for me to take.

You’d think that it wouldn’t be so hard to get pain meds that aren’t narcotics, that aren’t addictive.  Instead, my insurance company has cut me off or made it difficult for me to get two of my non-addictive maintenance drugs and left me with the addictive options instead (last summer, it was “oh no, we don’t cover that anticholinergic that helps you not poop your brains out and pass out on the toilet…here, have some donnatol, with phenobarb!”)  And I have to say, I’m disappointed that my new PCP’s office seems to be less advocating for me than selling me out in this most recent round of stiff the patient.

I was really hoping for better.  I have another appointment with the PCP on Friday.  It’s late.  5:30.  Probably later since he runs late anyhow.  MRI at 2:00.  Haircut.  Doctor after.  We’ll have some things to talk about.  In the meantime, I’m going to hope for a change.  How I’ve been feeling is intolerable, physically.  And that’s making me feeling horrible emotionally.  And I really need to feel like I have help right now, not half assery.

Eye, yi, yi, yi…

Something is stuck in my eye!
I picked up a t-shirt, flicked it like a big jerk
and something quite gritty flew off it.

(to be sung on way to urgent care)

So I’ll be talking to that new primary care a bit before I anticipated.  Because I have awesomely ambiguous insurance:  I am covered for an ER visit in the case of an emergency but “crap stuck in eye despite flushing with half a bottle of natural tears and prodding with wet q-tip is (oddly) not listed under the “e.g.” for emergency conditions.

I get it.  It’s not like a heart attack.  And I feel dumb for having done it and for need to go to urgent care, and for calling this guy (on call no less) to say “hi, you haven’t met me yet but you’ll be getting to know me SOoooooo well…”  I get it.  But it is my eye.  Last time I flicked some mystery bit into an eye (nearly 20 years ago), I ignored it even after the oozing started – ended up in the ER anyhow.  So now that I’m older and wiser, apparently I can’t be trusted to do normal routine tasks without hurting myself but I am responsible enough to not wait for the ooze.

Oh yes, and also I get two new categories on my blog.  “Eye” and “doing something stupid”.

Update 6/2/10:  Ok I decided not to go to the ER.  For three reasons.  (1)  I couldn’t get a call back from the primary to be (not super happy about that – he could have at least called, no?)  (2) I really didn’t want to go and found all kinds of reasons like “my local ED probably doesn’t have the equipment to even look at my eye let alone get this thing out of it”.  (3) After rinsing my eye about 2 dozen times, I finally moved the bit away from my iris.  My eye still stings and I woke up to cloudy vision but it passed (cloudiness, not stinging) so the hell with it.

Pt. 1 Uterus?

They don’t even know us!

(somewhat continued from Gynecological diagnosis III)

I mentioned before that I’m having a hysterectomy for the endo and adenomyosis.  It was a long walk to get there, and I’m not even quite there yet but as a destination, it’s been added to my itinerary, so to speak.

I had a very good doctor that I saw for gynecological problems where I used to live, down in the New England outback.  There were only a few things good about living down there:   the GYN, the dentist, and the vet were among them.  Since moving in July 2009, I miss them all.

The GYN I first had in the New England outback was not good (2002).  A general service OB/GYN, meaning more OB than GYN.  She did my first laparoscopy and left some endo sites because she didn’t feel comfortable removing them.  Eh, what are you gonna do?  I guess I prefer that to her screwing up my ureter.  But what I’d have really preferred was a good gynecologist for that surgery because I came away from it knowing that it was likely I’d need another operation.

When the OB/GYN left her practice (there was a lot of that in the New England outback), my options were to see a rather far away baby doctor who my leaving OB/GYN had transfered her patients to or to find one on my own.  I opted for the latter.  I asked around, did some research, and found a guy who had become an endo specialist by way of infertility.  Not to say we didn’t have disagreements or some treatments that sucked.  He was far away too.  But he was a good doctor and a decent guy.  With the exception of his receptionist, his staff were superb.  I loved the NP and miss the hell out of her.

In July of 2009, I moved up here to a bustling New England hub for a job.  I needed to find a new GYN.  Shouldn’t be a problem, right?  I mean, you can’t throw a stick up here without hitting whole diverse populations of doctors – veteran practitioners, specialty clinics, fresh faced newbies just done with fellowships and whatnot.  But it turns out looking was much more difficult this past year.  Aside from the issue of a larger search space,  I don’t have my network of endo folks up here – some of my friends in grad school had significant gynecological problems and were unbelievably helpful in my search in the outback.  But up here I don’t know too many people really well anymore.  I asked some old friends who grew up in this city for their recommendations.  Most were healthy enough to simply suggest Dr. So and So, “a very nice gynecologist who delivered all my babies”.  The few who had gynecological complaints all insisted pretty much anyone at this one Big Ass Teaching Hospital would be excellent.  That’s where all of them had surgery.

It probably didn’t help my search abilities that I was working full time at a brand new job, i.e., I had less time to sit at the computer researching this stuff.  And finally, I have a more restrictive plan now – I need a referal for any damned thing.  So I was receptive when in August 09, my then new (soon to be former) primary care suggested a practice in her group.  I looked them all up to see who was the least baby-doctor-ish and found one.  Minimally invasive surgery, good.  Affiliated with two good hospitals, one of which was the BATH my friends had suggested.  Also good.  I noted her name and then I put it off  because by October, I was in a “no more doctors!” mood and the GYN stuff was not at its worst.

Well well (not not)

Here I am again.  Having taken a hiatus to find a real job in a really bad job market, I’m back.  I’m working full time – sometimes a 40 hour week, sometimes less, sometimes more.  My boss is insane (mantra is “she’s only interim….she’s only interim”) and had, within my first 6 months at work told me that I “look sick” and that I was “making myself sick”.  Fantastic.  Some months later, she was diagnosed with uterine cancer.

Before I go on from that, let me just say, this is going to be one of those times.  One of those “oh Dyspatient is really bitter.  How mean!”   I have to preface (further) by saying that I am not proud of this.

When my crazy boss – who has punished me by changing my sign in/sign out procedures because I had the nerve to advocate for restroom and food breaks at work; who told me that the other person who had my job just worked 12 hour days to cover what is an obvious and legal liability risking staffing shortfall; who made those disparaging remarks about me being sick (I didn’t bring it up, I got sick at work  prior to restroom and lunch coverage arrangements being in place and had to go to the ER) – announced to the staff that she had been diagnosed with uterine cancer, I did experience some moments of schadenfreude.

Yes, I’m a horrible person.  Yep.

Let’s see…I tried to catch up all that can be quickly summed up in my “About Me/About This Blog” section.  Some doctor stuff.  I’m living closer to a real city with big research hospitals.  Unfortunately, those hospitals seem to have a paucity of primary cares and my insurance won’t accept “rotating resident” from a clinic as a primary.  I had picked one who was local and fit a few of my preference parameters when I first moved up here – and I mean first, because while cleaning a glass and metal lamp shade in the days of unpacking post-move, I massively cut my finger.  It bled and bled and bled some more….finally after walking around with it wrapped in about a whole role of gauze, I went to change the dressing and it was still very actively bleeding.  So off to the hospital, which was covered by my old insurance with a big fat co-pay.  And then either back to the hospital some days later to have the stitches out (and another $50-otmy) or find a doctor who was in network for my NEW insurance (lucky me, I had insurance overlap!) who would take them out for a mere $15.

So I have this doctor now.  She’s a nice person I think, but not a great doctor.  She might be an ok doctor.  I can’t judge in those areas anymore.  I can judge shitty and great, but the middle ground is a place I just don’t dwell.  I tend to bring out the best or worst in them and I don’t think it’s just my affect.  How a doctor deals with someone with what is, unfortunately, a growing list of symptoms without identifiable causes (at least without primary causes) tends to be either really great or really bad.  And believe me, I’m pretty flexible on “Great”.  I’ll take compassionate, intellectually curious, thorough, advocating, educating, enduring, and with strong follow through even if there is no diagnosis at the end of it. Hear that doctors?  You don’t need to fix me!  I’d love it if you did but honestly, I’ll take helping me just get through the day to day without letting the ego threat of unknown causes and new symptoms turn you mean or dismissive.

Current primary has become dismissive.  She blew in and (tried to blow) out of that room like a whirlwind. I came in with a list of things to talk about – I knew I had this follow up scheduled so things that were problematic but not urgent, I just put on the list but I got to exactly one thing on it before I gave up on calling her back from the door. Truly, it was clear that she didn’t even read her own note for why I was there for the follow up she’d told me to schedule.  I left there feeling terrible.  And feeling very lucky to have gotten into therapy with a good psychologist, because I left with what I call the deep dark despair thoughts (D.D.D.).  So now I’ve got an appointment set up with another doctor.  Internal medicine/Infectious disease certified, good patient reviews, not as close as the one I’m leaving but if he’s good it’s worth it.  We’ll see.

hmosis

From Harvard Pilgrim Health Care’s “Why Does Your Drug Require Prior Authorization?” page.

Why does Zyvox (linezolid) require prior authorization?
Zyvox is a very strong and costly antibiotic. It has been shown to be just as effective as other antibiotics currently available to treat infection, however because it is one of the few antibiotics shown to be effective against resistant gram positive infections, infectious disease experts caution that this drug should be used conservatively. The Harvard Pilgrim Prior Authorization Program helps to ensure that this drug is used only when medically necessary.

It’s tangential to why I’m quoting Harvard Pilgrim Health Care’s FAQs, but I have to say the statement that Zyvox “has been shown to be just as effective as other antibiotics currently available to treat infection” is so flagrantly misleading it’s insulting to anyone with more than two neurons to rub together.

The relevance though is that my brother was denied his medication (zyvox) tonight when he went to pick it up from the pharmacy on his way home from the hospital. Two weeks inpatient and he’s not sick enough for the HMO.

“Prior authorization” means he will spend hours on the phone tomorrow trying to get this cleared up. He’ll have to do it himself because if someone tries to advocate for a patient, even a very sick patient, the bureaucrats bust out the HIPAA gags before you can even say “health care proxy”.

So if my brother’s got enough luck, tolerance, and energy to fend for himself with the HMO tomorrow, he might get the drug approved in time for his next dose.

I totally get not wanting people to hand out Zyvox like it’s candy, but a vancomycin resistant MRSA pneumonia really looks like one of those situations for which Zyvox is the best thing going (1, 2) – better than the other antibiotics Harvard Pilgrim’s website nebulously refers to.

Also, I’ve got to wonder…does it really need to be this hard for the doctor, the pharmacy, and the various departments (or rather, databases) at the HMO to get in the same chapter if not on the same page? It’s not like we have to wait for the pony express to deliver the document with the diagnosis on it from the hospital way out East to the HMO head office….er, way out East. We have electronic databases, intranet, and internet. Even the slower connections and programs on poorly maintained 3 years out of date systems (what I hypothesize are used in many if not most medical contexts) are usually faster still than a bike courier at 3 on a Sunday morning in Boston. Point is, I’ll bet if an insurance company had the proper motivation (i.e. business related) to facilitate communication between it’s departments (e.g., that which handles inpatient care claims and that which handles prescription coverage), we’d see that info moving so fast you’d think it was magic.

Update 10/16/07, 7:12 PM. Hospital has faxed “the form” and the HMO is doing whatever it does which we would consider mulling it over. And my brother is going without antibiotics for two doses and counting.

House call

I’m sitting here waiting for my neurologist’s office to return a call.

I called about 24 hours ago. I called again this morning. “Sometimes it takes up to 72 hours to return a call…” the woman who answers my call tells me.

It’s been over a month since my insurance company refused to cover the off label prescription for migraines my doctor gave me. My doctor’s office’s solution to this problem? That I should come in for another visit. Nothing in my condition has changed since my last visit, except that now I have migraines so often I can barely find a day when I don’t have one to drive the substantial distance to my doctor’s office.

The only problem which necessitates my needing to get into the office is that my doctor and my insurance company have different opinions on how I can and should take this drug. Meanwhile I have insurance which covers prescriptions and no migraine medication. To me, this sort of defines the term “clusterf*ck”.

So what do you do to remedy this kind of situation as quickly and cost effectively as possible? If I were to judge my options by my doctor’s office staff’s unwillingness or inability to work with me on this issue over the phone, it seems I have no choice but wait a month for an appointment, line up a ride in case it’s a bad day, do the 50 mile round trip to his office, pay a copay that is 1.5 times my normal copay (since he’s a specialist), and rack up charges for my insurance company to pay.

Doesn’t it seem like there should be a simpler, cheaper solution to this?