paging doctor, um…

Had to page my GI doc at Big Granddaddy of all BATHs three times this week to get a call back.  Who dropped the ball?  Well it depends who you ask.  The predominant answer seems to be “not me!”  A very stressful call with the BATH switchboard staff last night.  So much so that I DID break a stress/anger sweat, got dizzy and faint on the phone with GI doc after, then spent a half hour shaking.  Then hit a big wall and slept like I was drugged for nearly 12 hours.

Jeezus.

So in my attempts to get ahold of GI doc this week, after paging Tuesday and Thursday, on Friday I faxed a status report to her office with a “hey call me, Girl” note attached.  I use the fax as the last ditch effort.  I know they read the faxes.  For anyone who has a complex medical thing to discuss with their doctor, if your doc doesn’t use (at all or reliably) email, then feel free to steal this trick.  It works well, providing you don’t over-do it.

When we did talk, she told me that she got my note and thanked me for it.  I’m better able to express myself in writing, but the added bonus of having sent this is that this detailed one page statement of what’s up for me is now going into my medical record.

In the fax I sent to GI doc, in addition to her requested update on GI meds, diet, lower and upper GI symptoms, and weight, I included a paragraph called “referral”.  In it, I state that I want her assistance getting a referral to a very special specialist to assess for neuropathy.  Here’s what I wrote:

Referral:  I’d like to ask for your help in getting an appointment with a doctor who can evaluate for – and, if needed, treat – autonomic neuropathy.  I have a history of symptoms of autonomic dysfunction (fainting starting at 8 years old, an abnormal tilt table test in June 2010) which have increased slowly over time and which I am certain have worsened in the last 8 – 10 months.  Compared to this time last year, I have more dizziness, more episodes of very low blood pressure (80s/40s), and I recently discovered that I am not sweating much (sometimes at all) in hot environments.  I sweat last summer.  This summer, I ironed a shirt in a 95 degree room and didn’t break a drop of sweat.  I am using ice packs, spray bottles, and just purchased a cooling vest because I have been feeling dizzy, frequently near fainting, and having chest pain even while resting in the recent heat.  My primary care has expressed concern about causes for the gastroparesis, especially in the context of my other autonomic symptoms.  He would like me to see a neurologist who specializes in “inflammatory neuropathy”, “peripheral neuropathy” or autonomic dysfunction.  I would like to see someone at (Mega-multi-BATH network) for insurance reasons but my primary care is not very familiar with (MM-BATH) groups.  Do you recommend anyone and can you facilitate my getting an appointment?  I find that (MM-BATH), (Big Granddaddy of all BATHs) especially, is quicker and more efficient when processing “in house” referrals.

And so after she and I discussed the GI meds and symptoms follow up stuff, we turned out attention to the referral.  She agreed that this was a good idea and said she would be happy to help.  So yay!  This really is a big yay since the very special specialist I tried at BG-BATH was like “we require a referral, but if your referring doc is outside MM-BATH network, you need a note from the pope asking us to see you and why, then you wait 2 weeks while we mull it over, then we schedule you for next March.”  If the referring doc is in MM-BATH network, they just click a button on a computer screen and done.  GI doc said she’d email the very special specialist I wanted to try to see, so again, yay.

In the meantime, I’ll ask PCP to write up a note anyhow since he knows more about what’s up outside of the GI context although I think the gastroparesis plus the abnormal tilt test alone should be enough to win me a referral, I like to hedge my bets.  Doctors have taught me to do that.

Advertisements

Dig

Today is Mary Leakey’s birthday, my google doodle tells me.  I figured it out before I moused over it…I didn’t know what the dogs were doing in the picture, but I saw a woman kneeling in sand, human footprints, a trowel in hand, a toolbox by her side and I thought “oh, archeology”.

I used to want to be an archeologist, we’re talking when I was a little kid. I think it was influence and glamorized by Indiana Jones movies, but the desire was there earlier than that.  Was it the “In Search Of…” episodes we used to watch?  I was always drawn to antiquity, to early human societies and their remnants.  Also to poking around and wondering about the stories behind various “finds”.  A very young me digging in the dirt under a neighbor’s shrubs for god only knows what reason, I found a broken Snoopy necklace.  Why?  How did it get there?  Was it buried intentionally or did it drop from someone’s neck, broken and loose and into dirt that was soon to be disturbed?  I feel the same way about graffiti.  I don’t mean the stylized tags that have grown increasingly popular since the mid 80s.   I prefer the legible ones.  The stalls in the women’s room at my first college were full of this ledger of dramatic human behavior, stratified, cataloged, left in place for someone to try to follow the story…at least until the janitorial staff were summoned to slap up a fresh coat of paint.  One of my favorite books when I was studying anthropology was a book on ancient Roman culture that included excerpts from graffiti in various Roman cities.

I gave up on anthropology and archeology a long time ago.  I don’t miss pursuing the formal study of it.  It turned out that standing in a lab cleaning dirt off tiny little pieces of nail with a soft bristle toothbrush and a bucket of COLD water, then painting little tiny ID labels on said bits of metal is not a hell of a lot of fun.  But I am still drawn to antiquity, and to graffiti.  I still am fascinated by the notion of a record that is left and can be read and interpreted later, of a history that can be reconstructed and understood from the remains.  I very intentionally did not say “like” in those last few sentences.  Sometimes, fascination and like are not the same.  Doctors who study cancer can be fascinated by cellular pathology but don’t “like” it.  Just like I can find the development of civilizations and human society interesting without loving all elements of those civilizations and societies ( human sacrifice; institutionalized slavery, misogyny, and child exploitation – to name a few less likable human social trends which have been more widespread at various points in history).

Today I went through my medical records box because new GI doc needs records.  And I need new GI doc.  Yesterday, the EBS came back with a vengeance.   And so I started my dig.  A while ago, I put everything in order.  Medical records post lyme, post 3 laparoscopic surgery for endometriosis, post perplexing and disabling hip pain, post onset of chronic diarrhea with massive weight loss, post migraines going into overdrive.  There was a lot to put together and it sucked to read through the notes.  Oh the notes do you in.  I do not recommend reading them over.  Just shove them in a file and leave them there – a sealed tomb with hieroglyphs warning about dire consequences for those who dare disturb it.  This dig was complicated by the fact that I have had to raid my lovely, ordered record several times over the last few years.  A radiology report here that someone wants to see.  A set of labs there.  And although I always meant to, I didn’t always put things back well. I did at first, but as life got busy and we moved….three times since I wrote that post about sorting my medical record in June 2010…I just started raiding the binder then shoving things back on top of it.  And I accumulated new stuff that was never hole punched and filed under the right tab. Eventually, I think on the second to last move, I took the binders and what was not in the binders but on top of them and placed it all in a box.  The Box has been sitting upstairs at the place where we currently live, slowly but surely accumulating more stuff.  The Box is my site, and it is a mess.

Why put myself through this unearthing of things?  Well, if you were about to become my GI doctor, you might want to know that I have had several upper scopings since 2001 and 3 or 4 lower scopes since 2004 and I have records of all but the most recent, which are forthcoming.  All show “mild” inflammation in my stomach. Starting in 2004, all showed gastric polyps, which were determined to be benign.  All showed nothing special in the colon department, although the last two involved “inadequate prep”.  There are also several abdominal imaging reports, some of them ridiculously interpreted (worst ER visit ever, where they read me as having a normal uterus on the CT…except my uterus was removed 15 months prior to the CT) but at least establishing a baseline.  Oh and I got the CDs with the actual scans too.  Those are in there.  Labs, labs, and more labs.  OR reports from laps in 2002, 2007, 2012, and hysterectomy in 2011.  Nearly none of these things were done at or ordered through the BATH where new GI doc is, so that means nearly none of this is accessible to her.  It is up to me to get and bring in what is needed.  To sort, to sift, to get down on my knees and carefully peel apart the layers.  Gently lay aside my finds, grouped by type.  Into one pile go artifacts what may be relevant.  Everything tells a story, but what tells the story she needs?  Does she need the bone scan for my hip back in 2005?  Probably not.  Does she need the abdominal CT scan from 2007?  Yeah, maybe.  Will the growing pile of “relevant” overwhelm her?  Possibly.  Probably.

In gathering my artifacts for the new GI doc, I glance for a moment in the other binder, the often undisturbed one.  The cursed tomb.  On the first page is a note from a GI doctor who did not work out in Ye Olde New England Outback.  This is the one I was seeing during the massive weight loss that heralded the onset of chronic diarrhea.  My weight is recorded as 114 pounds on that page.  I am 5’5″ and apparently I “look anxious” and complain of diarrhea that the doctor describes as “intermittent” but then later says “occurs after eating”.  I remember how it was back then, this little artifact is enough to call it all to mind.  I ate, I was hungry. But everything I ate kicked off pain and intense bowel sounds/motion within 15 minutes and then a massive flushing out of my gut.  I couldn’t escape the toilet.  I went from 147 pounds to 114 in a few months.  Do I bring that?  The notes?  No.  I decide I don’t.  I want to present her with the facts, the tests and the numbers.  Not the interpretation of the facts.  I don’t trust that she will view them without a bias towards assuming the other doc was correct.  He was not, that was the doctor who intimated that I had an eating disorder and whose “treatment” consisted of threatening to give me an appetite stimulant although in his notes he indicates that I report no problems with my appetite, and an addictive pain med which he told me was not addictive (but which I recalled from my ex-husband as otherwise and looked up and yep, addictive – and it also turns out that it is contraindicated for patients who are emotionally unstable, which is what Ye Olde GI doc had clearly wanted to classify me as).

And so now I have a pile of what is relevant. I’m going to take it to work with me and scan it.  I had started doing that before but didn’t get very far but my god, I’m sick of maintaining this growing pile of reminders of the history of this illness.  I know it is useful but I am not impartial enough to want to take the time to care for this stuff.  I believe I could manage it better if it were digital, if I could zoom straight to what I want or what is needed without having to whistle my way past the scary sealed tombs, which I sealed for good reason, each time.  Eventually.  I promise.  For now, I’ll just work on putting together this particular exhibit and be done with it again for a while.

Reckoning

It’s coming.  I’m nearly out of the short supply of pantoprazole the covering GI doc wrote for me after I was given a half script the last time I saw my GI doc.  I truly dislike the doctor finding process.  There should be an interview stage, where you can meet with them and ask them questions to see if you will be a good fit.  It would save everyone time and I’m fairly certain in the long term save money as well.  Changing docs means repeated procedures, tests, etc.  I can’t tell you how many times this GI doc has re-ordered tests my primary already did.  Usually, I skip them and just tell her to get those results.  Maybe this is part of my “difficult patient” charm, but I see no reason for me to have two thyroid panels within a month of each other just because one doctor doesn’t want to take the time to get and look at another doctor’s results.  Especially not when the ordering doctor isn’t even going to be the one to have to go and get the previous results.  That’s up to the patient.  But it’s dispreferred and I think it has to do more with wanting to be able to quickly look in one (electronic) place for the results than anything having to do with good medicine.

I may (and I say this with some significant reservations) be looking into a pelvic floor dysfunction group – and those groups have GI docs.  Either BATH 1 or BATH 2…not sure which.  BATH 1 is closer, they seem to have a less surgery-centric approach, and they at least mention dysfunction of types other than cystocele and uterine prolapse.  BATH 2 is where my GYN surgeon and gynecologist are.  Both claim to take a multidisciplinary approach, but when you look at their medical staff, BATH 1 has GI, colorectal surgeons, and PT where BATH 2 lists two urogynecological surgeons.

I’m reminded of my naive question at the nurses’ station waaaaay back when I was a wee little newbie worker.  My first “real job” was as a unit secretary on an inpatient surgical unit (the kind of unit that has been changed to outpatient/ambulatory care now that patients are hustled out post op without waiting for the all important eating, drinking, and voiding requirements).  I wondered out loud why so many of our patients were on the GYN services.  The nurses shook their heads at each other, then explained to me that for “female problems”, most of the treatments are surgical.

We had a fair number of GI patients too.  Which brings me back to my main point.  Finding a new GI doc.  Ideally, I want someone who doesn’t think “functional” disorder means uninteresting and not worth her time.  I want someone who sees a diagnosis of a functional disorder as a hypothesis which she is willing to revise or revisit should new evidence – even evidence from systems other than my stomach or gut – present itself.  And I want someone who thinks of ALL of me – who wonders about the sores in my mouth as much as she thinks about the motion of my intestines.  Someone who cares about my nutritional status, someone who recognizes and incorporates into diagnosis, treatment, and general approach that I have some sort of screwy systemic thing going on which may be connective tissue based, may be autonomic nervous system base, or may be both, and which I’ve had all of my life.

Tomorrow I see my gynecologist for a routine check up and we will talk about pelvic floor dysfunction referrals.  I don’t need a referral, but I feel better about having one.  I worry that self referral is another sign to doctors that you’re a difficult and unstable person/patient.

But that’s tomorrow.  Today, I need to call the current GI to ask for a new script.  Bracing myself for this.  I’m guessing it’s not going to be easy since I already called twice about it when I first noticed the screw up and they have yet to resolve it.  This is  the “no, seriously, she needs to deal with this” call.  I hate those calls.

don’t go there

I have an appointment with a new GI doctor today, at the urging of my primary care.  This is one of the two he recommended.  In preparation for this appointment, I gathered up my GI procedure notes and reports, which lead me to have to look in the binder, the one with the doctors’ notes in it.  I should just shred this, because it is chock full o’misery.  I’ve started scanning my record but I hadn’t gotten the various endoscopy stuff done, some of which I couldn’t find at first and so I started looking all over, including in that horrible binder.  It always gets me down, seeing the incorrect stuff “patient reports no symptoms since last visit” in the GI notes – a load of horseshit, I was seeing them for chronic diarrhea and when I say “chronic” I mean CHRONIC; “I spent 50% of appointment counseling patient” Oh boo fucking hoo, he spent 50% of time counseling patient because he was offering only an addictive pain medication and a med that would increase my appetite, which was never an issue, to “resolve” the massive weight loss from CHRONIC diarrhea and the post prandial pain.  With that doctor, the medication I eventually ended up on was one I recommended to my primary care, and which she prescribed – elavil.  I had found out that it was used for IBS-D and for chronic migraines so I asked about it.  And it helped.  Didn’t fix it all, but I gained weight back and even when I’ve lost it when the diarrhea went through periods of exacerbation, between the elavil and the levsin (no longer available, btw) I didn’t lose as much as I had that first year and a half in 2004-2005 when this all started.  But that GI doctor (and the neurologist I was seeing at the time) took credit for suggesting the medication.  Fucking asshole.

And this is a bad thing to be considering going in to my first appointment with the new GI doctor.  That plus the fact that the surgeon’s office still hasn’t called on the ultrasound results = me in a mood.  Less bad than Friday but I can sense that hard little ball of pissed off, frustrated, and deep dark despair knotted up in my psyche like a hornets’ nest just waiting to be poked.

Scanner, here I come

One of the ways I feel better about the – shall we say “extracurricular” crap I take at work is to sometimes put office equipment to less than official use.  My justification is this:  Work crap makes me sick.  I need to then copy more medical records for the appointments I need to go to because their crap makes me sick(er).  Ergo, copying medical records is work related.

Yeah, pretty flimsy I know.  But, it has improved my knowledge of our office machinery.  E.g. I now have a higher level of expertise at scanning to file as email attachment than anyone else in my office.

So since we’ll have some down time soon and since this and last week I was put through the wringer at work, I’m may  to avail myself of the opportunity to get to know the scanner’s duplex input modes a little better.  Mwahahahahahahaha!

pre-op appointment tomorrow

I’m assuming there will be med students.  And histories.  I hate histories.  I hate giving them, I hate the looks.  Hrrmph.  Well, I doubt I’m anything they haven’t seen before.  I just hope they don’t fuck up my history with biases or discount something important.  That is always my concern.

In addition to my medication list and list of “shit that’s wrong with me”, I have a list of questions.  I have no idea if tomorrow’s venue is the appropriate ones for them, e.g. “what can be done to lessen complications of anesthesia like nausea?” “what sort of pain control will I have postoperatively?”  But I’m bringing them anyhow.  I’m resisting the urge to bring everything.  They can ask and I can fax if necessary.  I’m not in the mood to lug the whole thing around.  Oh for the electronic medical record.  Why the hell isn’t it here yet?

sorting

I’m sorting.  It’s hot as blazes out and only going to get hotter.  I’ve got the day off and the air conditioner going.  So I figured “what the hell – I’m gonna stay in and sort some medical records!”  Yep – there it is, spread across the living room floor.  So far, I’ve got OR, scopes (and other procedures), and imaging all sorted.  Now on to labs and notes.  Which is the bulk of the mess.

I need a carrot though.  Um…shopping?  Ice cream (got my purse full o’lactase ready to go)?  Ideas welcome!

It’s official

I pass out.  ;p

It did not take me long to pass out on the tilt table.  About 10 or 15 minutes at 60 (?) degrees upright.  The young man was very good about bringing me out of it – got me head down and cooled off fast (I always get super hot as I’m going out).

I want my data.  My husband is a data freak and loves time series stuff.  I asked the kid (and I do mean kid!  he was so young) what kind of analyses they do – variability and curve fitting it seems.  “What?  No entropy measures?!” my husband practically yelled as we careened into the B.A.T.H. cafe for my much needed post-tilt coffee.

That’s right.  My fella wants to single handedly reform how doctory types look at and use physiological data.  I’ve offered him a guest blog post on the topic, along with “how electronic medical records should work”.

Memories

It’s official.  I must scan my medical record.

I had been thinking about not wanting to make another copy of it, something I already did in part several times this past year on account of moving, getting a new primary care, GI, GYN (two takes for that one).  Providing a full copy means not only copying (and paying) but sorting.  See, I had it all nice and neat and sorted in a binder.  But then I was working and my schedule was difficult to manage in the Fall, and time was tight – long story short, whenever I had to pull out some record of crap for some other crap that would itself eventually become part of the record, this past year I just kind of yanked it out and then shoved it back in any which way.  The shit’s a mess.  Not a disaster, but not neat.  There are multiple copies of crap, but not uniformly multiple, so I can’t be sure what’s a duplicate and what’s a copy.

This means to make a copy of it, I need to sort.  Sorting means reading.  And reading means Memories.  I had been thinking that the reason I was reluctant to bring a copy of my record was the bringing and delivering and the witnessing of the office/doctor reaction of “holy shit that’s a huge medical record”.  And now I’m realizing that I feel this sucky feeling EVERY time I have to spend too much time with that record.  I am realizing that probably a big part of why I was reluctant to make a copy was that making a copy means witnessing my own reaction – which does involve thoughts of the lucky recipient to be – but which also and possibly more significantly is recognition of the dead ends that are reflected in the record…and how it felt to hit them.  As much as I’d like to (and as much as I truly, consciously believe that I can) disassociate the very unpleasant feelings this record evokes, I think my current mood is a testament to the fact that I cannot.  It’s as if while I am doing what I believe is the sensible, non-emotional work of sorting and filing the many pages in this record, some internal mental archeologist is in there compulsively reconstructing emotional events from these artifacts.

So.  The solution is to scan this shit.  Obviously there is emotional maintenance to do too, but I think scanning is part of that since generally, emotional maintenance of this sort takes the following forms for me.

  1. Reflect and try to figure out what’s up.
  2. Try to find a way to feel better right now.
  3. Try to find a way/ways to do things so I don’t feel as bad in the future.

Ok, I think I have a start on (1).  I’ll talk to my therapist about it too.  Maybe she can help me explore this a bit.  For (2), I’m going to go to the beach.  I put the files in a quick order, I moved them OUT of my bedroom (I don’t need that stress in my sanctuary), and I will finish shorting in small bits later, when I have the promise of something nice and social and engaging to do after.  For (3), I’m going to scan this shit so the next time I have to access and duplicate even one small piece of the record, I don’t have to go pawing through the paper.  With a digital copy, properly annotated and/or named, I can access the exact thing I need without having to LOOK at the other shit around it.  Yes, seeing the folder size might evoke a bit of a response, seeing the list of dates in the file names might be a bit bothersome, but I can’t imagine that accessing digital copy will trigger such a compulsory trip down Memory Ave* as does having to look, look, look and read, read, read to get to what I need.

* = Memory Ave is different from Memory Lane.  “Lane” sounds quaint and cute.  It brings to mind a gently curving road bordered by nice yards behind white picket fences, with jolly ruffled curtains in the windows of the houses overlooking it.  Somewhere, someone is making lemonade.  Porch swing creaks and chipper whistling can be heard.  Memory Ave, on the other hand, could be on the way into Detroit.  What houses are there look abandoned and hopeless, the “yards” are strips of dirt where trash and broken children’s toys huddle.  Empty lots between them show various industrial views: self storage facilities, a power plant, and various faded brick buildings.  There’s probably a belligerent drunk on the corner up ahead, ready to leer and breathe foully at you as he tries to bum a cigarette.

What to say?

My brother and I were talking about how difficult it is to put together a cohesive narrative, autobiographically speaking.  We were talking on the topic of job interviews (my sister’s currently looking, employed but not loving the job).  “I’ve gotten very good at this,” my brother said.  According to him, the last time he was in the E.R., the doctor taking his history told him he was amazed at how much information my brother had been able to get across.

I need this now.  Granted, my history is not quite as remarkable as my brother’s.  Little brother has HIV, HCV, a history of syphilis (oh christ how do you spell that?!), giardia, MRSA (skin and lung)…I think I’m forgetting something, and that’s not touching on the family/psych history stuff.  So mine is a little less hair raising – thankfully – however it doesn’t have short names.  So for each complaint, there is this long rambling crap that goes with it.  How do you boil this down?

I’ve been thinking about this because I have my first appointment with the potential new primary care doctor on Thursday.  I feel, as my brother would say, like a “hot mess”.  Maybe I should just write that on the history forms.  Dx: hot mess, 2002.  That’s about as good as “post lyme”.

The problem, ok, a problem with saying “post lyme” is that I have no idea if all the symptoms I have had since having Lyme are in fact part of the “post lyme” or something else.  Also, wtf is “post lyme”?  I mean, to too many doctors it seems to mean “Ah, I can comfortably ignore your symptoms because ‘post lyme’ is an ill-defined phenomenon at best and is not curable”.  But if I don’t say “post lyme” and instead list off everything with dates and progression, well, I’ll be there for a while.  Long enough to see the doctor’s eyes glaze over and the beginnings of the long white beard starting to twine down into the stethoscope.  And then there’s the not post lyme.  There’s the gynecological stuff.  The migraines I had before lyme but which maybe got worse after unless those head aches and dizziness spells I get now are not migraines but something post lymey, or not post lymey but something that just happened to start post lyme.

Ugh.  You’re starting to see the problem.  Throw in the intestine stuff too for good measure, why not?

My therapist suggested just presenting a list of the symptoms without trying to categorize them or cherry pick (my term, not hers) based on what I think they will think is relevant.  Let the doctor figure out what is relevant.  This was something she suggested with the GI doctor though, I’m not sure about how this will work in a less contained (i.e., “partialist”, as Dr. Dinosaur would say) context.

So.  Do I make a list?  I suppose I may.  I might also bring my handy “history of Dyspatient’s thyroid, rheumatological, and lyme bloodwork results” just for fun.  What I’m not doing is copying my entire record from 2002 (yes, I have it) and bringing it in.  It scares them.  And they don’t read it.  I will bring it by if this guy seems like a keeper.  And I’ll just have to trust that the doctor will give it a look through if he can stand to wade in.  Oh, if only the world of electronic medical records was here.  But that’s a whole other blog topic.