“you look hypermobile…”

This is what the physiatrist said to me yesterday in her office.  Oh how nice to have someone not question this because I no longer can do all my bendy things without hurting later.  Even the easy guided motions we did during the exam made me hurt about a half hour later.

“People like you, they don’t usually dislocate all the time as much as they sublux.  Subluxing is like a partial dislocation” she told me, moving my arm into a ridiculous position behind my back while checking my range of motion.  “Oh boy, yeah, look at that…you’re really flexible.”

The disappointing thing was that she had been saying PT with weight training and I was like “!”, but that was BEFORE she examined me.  Specifically, it was before she got to my hips and sacrum.  “This is….did you know your left hip is considerably higher than your right?” she asked.  “No, but I’m not surprised to hear it,” I told her.  “When I’m symptomatic, there is a lot of clicking and popping going on back there.”

As we were wrapping up the exam, she said “I don’t think PT would be good right now.  Until that’s fixed, it’ll actually just make things worse.” She has a chiropractor that they use, she said he is really good and doesn’t rack up the extra visits.  Ok, well I’ll give it a shot.  If it’ll have some promise at fixing the shockingly intense and enduring pain I get from things like walking or going over a bump in the car, I’m game.  I can’t imagine that this is a good thing, to have your hip all bent out of place.  Can’t imagine it’s good for your hips, pelvis, back, etc.  You get the picture.  She even drew me a picture, showing me how she thinks my hip is rotated.  Well now.  How come no one mentioned this before?  She also strongly recommended I start taking melatonin and magnesium supplements.  She says they’ll help with the pain sensitivity, but for me, honestly, better sleep would help with a lot of things.  When I don’t get enough sleep, I am spacey, and when I’m spacey, I move badly – then I hurt myself.  I also identified sleep deprivation as a significant migraine trigger for me many years ago, even back before I had them all the damned time.  Magnesium’s supposed to help with migraines too, so we’ll see.

Other doctor stuff this week…

I finally had my appointment with Neuro #3.  It went pretty well.  I’m finally (!) getting that ganglionic acetylcholine receptor antibody test I’ve been asking about for 6 months.  He’s the only person who has said he’d like to rule out what I would like to rule out (autoimmune autonomic ganglinopathy).  It can take months to get back, only two places in the country do it (Mayo is one, I think I knew this from my research, they had a really nice protocol for testing).  We talked about midodrine for the POTS, he thinks it might help my gut if I got my POTS under control.  Hm.  Maybe.  Mr. Patient was there with the magical ID badge too.  Mr. Patient asked “And would you just recommend treatment to her primary care or would you prescribe it yourself?”  Neuro #3 said “Oh no, I’d follow her.  And I’d want to follow you, I wouldn’t just prescribe.”  Good.  Finally a specialist who isn’t like “ok I did my thing now fuck off!”

My cousin, who is not related by blood but should be, had asked me the day I saw Neuro #2 back in September if I could recommend a good primary care because she was done wit hers.  I gave her my doc’s contact info.  Texted with her last night and she says he was great.  She also says he agrees that we must be blood relatives somehow, because not only do we sort of look alike and act alike, but we also have crazily similar medical stuff.  I’m glad that I could connect her to my primary care.  He doesn’t have all the answers but he’s smart and caring and I think he’s exactly who people like us need.  First on the list, he’s sending her to the geneticist I saw in 2012 after serend-hip-itously “subluxing” my hip at a visit with my primary care.

So that was my two days of doctor appointments this week.  Back to the office today, where I am scheduled to meet with HR to discuss the locking of the accessible entrance to my work building.  I’m not sure it’ll make a difference, but I am sure doing nothing will not.  So off I go, to charge another windmill!

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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.

 

Out at work

We had a staff meeting yesterday.  Towards the end, my boss announced that another department is doing a “fitness challenge” and wanted a volunteer from our office to participate.  I’m a little fuzzy on all the details but the general gist is this.  All departments recruit at least one member to sign up for a certain time period of semi-public sharings about how many times they took the stairs, walked a mile, ate some kale, shit like that.

This is so not me.

My boss said “I did it last year and it was a pain in the ass, so I’m not doing it this year.” and then we went around the room and each of us tried to get out of it in various ways.  Our office coordinator, an unbelievably cheerful and accommodating person, said “I already was recruited by X department” (she has a lot of friends in X department) “and last year I did it with Y”.  Assistant director didn’t say anything, but put his finger on his nose, the universal gesture of “not it!”  So, me.  “I’d do it if I could think of some way to adapt it to me and my health stuff, but let’s see, taking the stairs?  Not something I do.  Food?  Let’s see, I can’t eat before noon, so the whole ‘healthy breakfast’ thing is out…and there’s an increasing number of things I can’t eat, many of them are what’s considered ‘healthy’.  I don’t know how I’d do this without a mass disclosure of a lot of health stuff, and while I think it would be good for people to have the educational experience, I’m not sure that I want me and my body to be the lesson in such a public way.”

So, in other words, “not it!”

It makes me apprehensive to have to bow out of these sorts of things.  I worry that at some point, I will be seen as taking too many liberties, too many “special” circumstances.  But damn, it’s work, you know?  I need my energy at work for WORK, not for sprinting up and down flights of stairs while the training montage music for Rocky plays.  My big “fitness” challenge is managing to do my PT exercises, and you know, I’m just not in the mood to share those with the group.  I have to deal with public judgement in a bad way almost daily.  Why ever would I sign myself up for participation in an activity where my abilities will be officially compared to my (mostly healthy) peers?  That’s like inviting a really bad day, every day.  No thanks.

AM OT, PT, OMG

Knowing that you have a PT appointment in the morning is like having to go to gym class.  It’s usually not as bad as you imagined, but it is still something that makes you groan when you get up in the morning.

That was my experience today.  After waking up at 4:00 AM drenched in sweat.  Again.  I fell back asleep finally, then woke up to a frozen iPhone cheerfully blinging at me that it was time to get up.  Unable to just “snooze” it, I did a hard shut down (yep, half asleep even) thinking “oh hah, I don’t have to go to work today, I’m working from home!”  then fell back asleep until husband’s much later alarm went off.  Then I looked at the powerless iPhone still clenched in my hand, and remembered I have gym class…I mean PT today.  Crap.

I’m working from home today and tomorrow.  Right now, I’m taking a break.  A bad break since I should take a full break from the computer when I’m taking a work break, so say the occupational and physical therapists.  They are right, of course.  I’ve been working for the last hour and a half straight, editing calculus figures for a student who is blind.  This means lots and lots of mouse.  So break away from the computer in a moment.  On a related note, I really need to get a better mic for my dragon use.  I have the crap one that comes with it.  I may as well talk through a tin can with a wire plugged into my line in jack.  USB microphone is the way to go.  I had a gorgeous one that I bought at my last job, it was so fancy and nice.  I need one of those.  So I can blog and stuff without hurting the hands.

I am “discharged” from PT and OT, sort of.  I’ve been going for a month.  I’ve definitely made some progress.  Less pain, and better strength.  Baby steps.  PT guy said that we had two options.  We could do today’s evaluation and then continue to add exercises or we could take a break, I can keep doing the exercises he gave me (really just 4 very low impact things for core strength), and then come back for more PT when I’ve built up the strength. I said “I’m leaning towards option B”.  So B it is.  With the caveat that if I have questions or need a refresher, I can call and come in.  That’s cool.  Works for me.  I’m definitely in the baby steps phase.  I was thinking of making some kind of exercise chart.  I need visuals, otherwise I just sort of poop out and go “meh” and don’t do what I should do.  I’m  thinking something with star stickers.  I’ll post a pic if I make one.

In other news, my husband and I bought a couch as our christmas present to ourselves and we just got word that it’s in and can be delivered soon.  Wooo!  We’re probably going to postpone delivery until February since that’s the first weekend slot that’s open.  I am already working at home today and tomorrow this week (medical appointments, more on that in a moment) and I don’t love the idea of taking another day off right away unless I have to.  So, yay!  New couch is coming!

Tomorrow’s appointment is with the dentist.  I get the first of my four metal fillings taken out of my head.  I’m looking forward to moving a step closer to being metal free but not looking forward to the experience or the aftermath of sucking in metal vapor.  I’m going to ask for nasal O2 and advise them to be liberal with the suction.  From what I’ve heard, this helps.  I’m also going to premedicate with a crapload of benadryl and H2 blocker.  And husband is going with me (a) since I’ll be benadryl drunk and (b) in case I have a bad reaction to the metal vapors.  This is the dentist who said “I’m a little worried about anaphylaxis…”  And kudos to her for even considering it.  I figure that since the dental clinic is not only affiliated with, but also mere steps away from, Man’s Greatest Hospital if I’m gonna have a big awful reaction to having these things taken out, I’d rather have it there.

mapping pain

My ex told me that people “can’t remember pain”.  I scoffed at him.  Of course we can.  No, you can remember having had pain, but that’s different.  People suck at remembering the pain itself.

I have never researched this to see if ex was right or was just running on and presenting his own theories as fact.  But now that I’ve had to try to explain the location, character, and intensity of pain in various medical settings, I can tell you that I truly do suck at it.  What helps is if I keep a journal.  I don’t like doing that because I find it draws too much of my conscious attention to it.  It’s not like you can NOT attend to it, part of the nature of pain is that it is a compelling sensation which demands attention.  For some kinds of pain, I can “zone out” and displace it for a while.  It’s still there, but I have this trick I used to do with menstrual cramps where I could sort of put them off to the side – I explained this trick to a therapist once and she said that what I was doing was a form of self hypnosis.  Cool.  Not all pain allows for this though, and very few circumstances do.  I need to be in a very controlled environment.  I.e. not at work, not at a gathering where I need to interact, not in a noisy place.

Trying to recall pain on the spot, pain that is intermittent and so isn’t always manifesting by the time I get to a medical appointment, turns me into a blathering idiot.  “It’s like sort of stabby…” I say, as if I don’t have a bachelor’s degree in English.  So when I need to communicate about the location, nature, and intensity of pain, I need to take the time to chronicle it as it happens.  I’ve had a hell of a time finding a good pain mapping application or utility.  Some are not too bad, but none fits the bill.  The American Chronic Pain Association has some really neat interactive pain maps for Diabetic Peripheral Neuropathy and Fibro, but neither of those patterns fit mine in terms of location so I can’t use them.  What I’ve had to do is download a “body blank” image and then draw on it.  Below is an example.  The text description of the pain image is below the image

Illustration of woman's body from front, back, left and right showing patterns of pain.

Decriptive text:  12/19:  Waking with pain, worsening in leg as day progressed.  Activity = walked approximately 1 mile at work on break.  Pain on waking was left hip sharp/catching pain, bruise-like right inner/upper thigh pain, sharp right ankle pain less intensity than night before on waking, and back pain like the night before but more diffuse and higher.  Left hip pain was very intense – low, back/outside, juncture of top of thigh bone and hip.  Felt more in top of thigh bone.

By the time I had walked ¼ mile, right thigh pain had extended down front to just above knee.  Very tender, even clothing on it felt bad – like I’d been skinned down the front of my thigh.  Right ankle/calf pain made it hard to step up and down curbs and stairs.  Back pain increased in intensity with catching in sacrum and left hip.  On the way back, legs felt heavy and weak.

So this is what I take with me today for my second PT appointment.  Let’s hope it’s helpful!

PT/OT for EDS

So I’m going to try it.  What finally pushed me?  It was turning.  I was in the kitchen to get something, I don’t even remember what now.  Walked to the rack that had it and reached (not stretchy reaching, just reaching) for the thing and PING went something in my pelvis/abdomen.  I realized immediately that it was because my shoulders and hips were not lined up, see I had done the dread “turn and reach” maneuver that is apparently forbidden by my bastard body now.  It was not a far outside a normal range of motion turn and reach, but apparently it was enough.  And let’s be realistic here.  I have no clear sense of what is beyond a normal range of motion since a normal range of motion for me is apparently a crazy “go go gadget arm” motion for someone else.

I held my gut where the pain was, it’ll go away, I thought.  I’m a crazy optimist.  Breath, and pain.  Start to move leg, and pain.  Finally, I sat on the floor in the only comfortable position I could find (slightly leaned back, leg on the offending side out in front of me) and tried to relax out of whatever spasmy bullshit was happening.  Putting firm pressure over where it hurt helped.

That was Friday night.  It still hurts today.

One of the BATHs actually mentions EDS on their rehab medicine page and has a protocol for EDS, at least a somewhat encouraging sign.  When I called, I was very upfront about it.  “I have Ehlers Danlos, hypermobility type, and I have chronic pain.  I’ve been told to try to see someone in PT or rehab for some help.”   The secretary put me on hold for a minute, then said “Ok, sorry, I was just checking to make sure we do that.”  Slightly less encouraging, but it was not a long wait while she checked so I’m hopeful.  Also, she started to schedule me then said “No, wait, not with him.  He’s new.”  Also a good sign.  I do not want someone who has no idea what EDS is.  Or as my primary recently put it, “If you do PT, we’ve gotta find you someone who knows what this is so they don’t kill you.”

I’ve been feeling crappy the last few days.  I think it’s migraine, I’m not sleeping well.  Pain = poor sleep.  And so you can imagine my delight at being asked to attend a meeting in a far flung building which truly is uphill both ways on a day when they’re calling for first snow in my area.  Oh joy.  I feel like I am personally keeping the cabbies outside my building in business.  Did I mention it’s a “bring your own laptop” affair?  Yep.  Bring a laptop, because the boob who chose the room for this not only chose one far away from most of the staff who are being trained but also chose one without computers.  I’m pretty stressed about it since even walking for coffee yesterday was a massive and physically difficult achievement.  Coffee shop is only two blocks away on flat terrain.  By the time I got back to my building, I was literally holding on to the wall to keep from tipping over.  With regards to the trip uphill with laptop in the snow today, I feel like someone said “hey, you’re going to have to walk a tightrope today.  That’s ok, right?”

Self referral

I shudder at the thought.  It should be reasonable, but even trying to write about why the prospect bothers me is difficult.  Here’s the situation.

I have joint pain, lots of it.  In 2005 (I think) my left hip rather suddenly started hurting.  I had been on my feet all day, moving tables, chairs, setting up for a poster session at an undergrad research presentation event.  I often forget that part of the onset.  At some point, my leg felt “off”, a feeling I wasn’t unfamiliar with, that usually resolved if I shifted position or kind of shook it out.  By “off” I mean it felt like things mechanically weren’t right.  This time, the feeling grew until it felt like my hip was being pulled off my body – I tried to walk to get to my car and had to slow, slow, slow, and eventually stop and practically lay on a wall.  For months after that, it hurt horribly daily.  It eventually stopped.  What stopped it?  Massively reducing my activity.  It would flare up again if I did too much, too much walking, moving furniture around (even small stuff like a coffee table).

I have knee and ankle pain weekly.  That started with the Lyme Disease, although when I say “started”, what I mean is that the pain for no good reason started.  I always had pain after walking a lot, mall walking, city walking.  A day spent browsing around a city would leave my legs throbbing in pain but I just assumed everyone had this, that it was normal.   What started with the Lyme, and stayed, is having that pain despite doing little or no walking.  Rainy days = pain.  Weather change = pain.  Sleeping wrong = pain.  Stepping the wrong way = pain.

I have arm, wrist, and hand pain and tingling.  My job and my hobbies are killing my hands.  Typing, writing, photo and audio editing.  I keep saying I’m going to look into alternative mouse options but so far I can’t seem to find the time to check it out.  I did at least get a split keyboard at work and oh wow does that help.  I can’t handwrite anymore – I’m good for about one sentence before my hand and forearm cramp up and my usually sloppy writing becomes completely illegible.  A page worth will leave me needing a cool water soak after.  And when cooking, I am no longer allowed to cut veggies.  Too many trips to the ER in rapid succession from 2008 to 2009 for big ugly gashes.  I’ve cooked since I was a kid.  I did not have a problem handling a knife.

I have this thing which I think is best described as erythromelalgia in my hands and feet.  This started in about 2004 I think.  Again, post Lyme, but there is the confounding factor that since getting Lyme and the pain and fatigue that came and never really left, I had to reduce my activity level or be in too much pain to do things like go to work, go to school, feed myself, clean my home, you know, all those little pesky things that make a life.

For a while, I tried getting doctors to care about these things.  I’ve seen ortho for the hip and had 2 rounds of PT, the first of which was helpful but the second was vastly unhelpful – the PT was very “it’s your hip” specific, and treated it like it was an acute injury in an otherwise healthy person.  I’ve seen rheumatology for the arm and hands and swelling hot extremities (erthyromelalgia).  I gave up eventually because under even the best circumstances with the least doctor levied invalidation, what I got for my troubles was what Louis CK so aptly phrased as “you just do that now“.

And now there is the pelvic and sacral pain.  Let’s just for a moment consider that area.  While I have given up many formerly pleasant activities which make life fun, and even (some would say) worth living, I had not yet given up sex.  However, the prospect of enduring post-coital pain is a bit of a mood killer.  It’s simple aversion conditioning.  Sex = pain.  Makes sex less up there on my list of fun things to do.  That’s not to say I don’t, but I plan it out now.  “Hmmm, it’s Saturday and I’m not totally in the mood but if I want to have sex, I should do it today since if I do it Sunday, I will have to face Monday at work in the worst of the pain that I’ll have for the next 3 to 5 days.”

A long history of being turfed between GI and GYN for any complaint located between my diaphragm and my knees has taught me that diagnosing “pelvic/abdominal” pain in a woman is apparently one of the great mysteries of life.  Sort of like looking for the Loch Ness monster or Big Foot.  And I played that game for a while, when the symptoms seemed to be GI and/or GYN based.  But this is different – really it is.  It is like the hip pain but deep inside my trunk.  It radiates around my flank and into my back.  It travels down my leg to my knee, and if it gets really rocking, it can make my whole leg hurt like I’ve jumped off a wall that is a little too high.  And the sacrum.  Oh god.  It feels like it’s coming apart.  Just like the hip back so many years ago.  Let’s not forget there is this one other little spot of connective tissue in the pelvis that goes unnoticed unless there is a problem.  It’s called the pubic symphysis, and it’s a little tiny place where the front of your pelvic bones come together, and it can hurt like a mo-fo.  It seems to be the case that this pain comes from trauma, sports injuries, or pregnancy.  But for some people, no.  We “just do that”.

So.  Signs point to connective tissue issues.  And they fit so nicely with my other general symptoms (the POTs type stuff, the GI/motility stuff, the migraines, the fatigue).  And yet, who do I see for this?  Primary?  Well, it really is a bit outside his area.  Joint and shit?  Lady joints and shit?  Oh hell no.  He’d want to refer.  But who to.  Ortho will treat individual areas, in my experience, separately.  Mechanically.  Overly-reductionist.  Rheumatology doesn’t want anything to do with me because my autoantibodies are just not high enough for them to give a crap.

I am not certain it is “pelvic floor dysfunction” but what other name to give to chronic pain in the areas from my lower ribs to my thighs that is now affecting and affected by everything that strains it:  sex, voiding, walking, cleaning, carrying anything…even how how I sit or stand.   Do I self refer to the pelvic floor dysfunction group and say “hey, it may not be this but I think you guys should take a turn at it because everyone else is all out of ideas and well, it might be this”?  And how do I communicate that, initially?  at the outset?  Over the phone to the office staff?  Not likely.  Better would be a written referral from a doctor I see, but so far, I’m not having luck with that.  What would you do?

rainy days and hip pain

It was so hard to wake up today.  Usually, my brain is awake around 6:00, if not earlier, and it’s just my body that refuses to accept that it is time to get up.  But today I was just out.  “Does that at least mean you slept well last night?” my husband asked as I staggered around the living room this morning.  No, not really.   I had to get up to pee a lot.  And I remember being very disoriented while getting up to pee.  Stymied by the bedroom door.  Unsure which way to turn for the bathroom.  I have a theory – that my blood sugar bottomed out while I was sleeping.  Here’s my favorite quote on that:  “Nocturnal hypoglycemia seems to have no immediate detrimental effect on cognitive function; however, on the following day, mood and well-being may be adversely affected.”  So this morning, after my alarm went off for the third time and I found myself quite ready to not only stay in bed but return to a deep sleep, I grabbed some candy I keep in the nightstand.  Got up to an ok blood sugar, 91 by the higher meter’s reading.  My not very well controlled tests with the meters suggest the higher meter is a touch high and the lower meter is rather low.  So probably my sugar was somewhere in the mid 80s.  80s isn’t bad for a fasting blood sugar.  It’s a little odd for someone who just ate three pieces of candy.

Yesterday, I had an appointment with my gynecologist.  He was not really convinced that my pelvic/abdomen pain was anything, mostly based on his hitting the bad spot on the external exam then failing to hit it exactly again.  “See, now it’s gone.  I might have been gas and I pushed it up.”  “You didn’t really push the same way the second time” I told him.  Whatever.  He’s not a bad sort, he’s just way out of his wheelhouse on things relating to joints, tendons, and ligaments.  Other than that, I didn’t have any pain during the exam.

But after getting home, the inside of my left leg started hurting bad.  And this AM, it’s the left leg and the left hip.  And it is some bad, hard to sit, walk, or stand pain.  And today is going to be tough.  It’s stormy, the weather is changing dramatically, which makes the pain worse and heightens the likelihood of a migraine.

So it looks like if I think I need a work up for pelvic/abdomen connective tissue issues, I need to find it myself.  Otherwise, I can look forward to more GI saying it’s not GI, it’s probably GYN.  And GYN saying it’s not GYN, it’s probably GI.  Turf, turf, turf.  At least the GYN isn’t a total turf queen.  He does follow up, he wants you to let him know how things turn out.  E.g., he called me last night after hours to say that he had seen my mammo and boob ultrasound was scheduled for over a month out.  “Was that for your convenience or was that the soonest they would do it?”  No, it was me.  I wanted an appointment later in the day (and yes, I know, I have a new lump in my boob.  But I have cystic boobs, I’ve had a mammo and U/S for them once before and it was a cyst (different spot).  And I’m sort of all filled up on dealing with the medical crap that makes it hard to get through the day, so I made a judgement call and decided that this can wait a few weeks).  And that he had also checked on my recent thyroid ultrasound and indeed there are some nodules so he wanted to know if I was seeing anyone for that, was it going to be followed up on?  Aww.  This is why I don’t want to fire this guy even though he demoted my chronic problematic pelvic pain to “gas”.

I think before I go for another GYN appointment, I’m going to look into some way to brace my hips when I put my legs up in the stirrups.  I believe the pain is from my leg lolling out too far to the side during the exam.  I need something to stop that from happening, because god knows my joints aren’t going to stop it on their own.  Any suggestions are welcome.

Update:  a google search on positioning for terms including pelvic exam, lithotomy position, hip stabilization, arthritis did not give me jack all.  Just med students whining about being thrown out of the room during exams (and sounding like the sort of person who should be thrown out of  the room during a pelvic exam), myriad random crap, and a few vague references to patients with scoliosis and arthritis needing alternate positioning like laying on their side with the upper leg supported on the clinician’s shoulder or held by an assistant.  You have GOT to be kidding me.  I guess it really is time to find some good PT folks around here.  Not gym teachers in clinical clothes, but actual real physical medicine and rehab folks who deal with actual sick people (and not just baby boomers who overdid it in spinning class).

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.

what makes a man Mr. Lebowski?

I’m reminded of this conversation between the “big” Lebowski and the Dude from the Coen brothers’ right now.  What’s on my mind is what sort of person goes into what sort of medicine.  I think most of us know that the claim of “I want to be a doctor!” is driven by many factors.  They are not factors I can personally relate to, but I cohabitated with and was married to one for a bit during his residency and the first few years of his career as an attending so I have a little bit of a glimpse into the world of docs in training at least.  A little.  And I realize that it is limited by the specialty.  Which brings us to the set up.  Not only is there some set of causes which end in the drive to be a doctor, there are factors which also determine what specialty or type of doctor they want to be.  This lend themselves to stereotypes.  Ortho docs are jocks.  Internal medicine = nerd.  Surgeons have a god complex.  ER/Trauma doctors are adrenaline junkies.

While you’d be an idiot to rely on the stereotypes as universals, is there a grain of truth to them?  Clearly there will be certain specialty specific cultures, just like there are cultures that go with any profession.  And what I’m wondering right now is what that is for gastroenterology.  As a patient, no field has given me more trouble than GI.  Admittedly, I have a sampling bias.  I’ve had GI problems my whole life.  And I did have a good GI doctor as a kid, but I had the misfortune to need to see others in his practice from time to time and let me tell you, those people were class A dicks.  GYN is a close second – reflecting on my hospitalization in 1992 for “pelvic pain” and loss of consciousness highlights an interaction of the two (in the context of 20 year old me, still a lot of rough edges back then).  I was in on a weekend, via ambulance to the ER, after a horrible episode in my dorm.  “Why is the top number getting higher and the bottom number getting lower?” one of the student emergency response team members asked while checking my blood pressure and waiting for the real responders to arrive.  “Because I’m going into fucking shock” I said, then leaned over the side of the bed and puked into a trashcan.  At the hospital, I was bounced back and forth between GI and GYN like a ping pong ball.  On the unit, no one wrote orders for pain meds, my regular meds, or food.  I remember crying while talking to the nurse, who reported that the covering GI doc thought this would be a good time to take a “vacation” from Zantac to see how I fared without it.  I was told there was “free fluid” on the pelvic ultrasound, discharged and told to follow up with GYN.  Which I did and which was a disaster.  I now know to carefully choose my GYNs.  Back then, I was just going to the guy my mother saw.  But with GI, it doesn’t seem to matter how carefully I screen them.  It’s like the old black and white sock drawer game*, except in this drawer, I am starting to think all the socks are the same color.

And so I’m starting to wonder if maybe there is something about the specialty, about gastroenterology that selects for jerks.

My current GI is on her way out.  My last appointment, she took quite a bit of time with me.  That time was to tell me to change my diet to an IBS diet – she didn’t have a suggestion but she promised she would find one, kudos on that I suppose, except I’ve tried the fibery diets and found them to do nothing except accelerate the symptoms; work out – and when I said I have a hard time with activity because of the fatigue, joint pain, and heat intolerance, said “work out in an air conditioned gym” and when I reminded her of the joint pain, said “join a gym with a pool”.  I said “sure, if I want to poop myself in the pool” – for a GI doc, she’s a bit squeamish on the poop references.  I didn’t know it at the time, but I found out later that she called in a refill for protonix that was half what I take – not listening, not reading the chart, or not caring?  She then left for vacation and I was left to try to find a refill for my meds, which cost me a $40 copay per month, and which I spent $80 on to fill for the last month because of her oversight.  Apparently money is no object to her, as she made clear by the “join a gym” comment.  Um, I’m sorry, I make less than $40k a year, have massive student loan debt, and just had to move AGAIN.  I don’t have the fucking money for a gym, let alone one with a pool, and even if I did, there isn’t one near me.  If she really felt strongly that this was the key, why not offer me some help in getting a PT consult and make suggestions for ones that offer aquatherapy?  That I keep a blog came up when we were talking about my recent GI symptom history, I mentioned something like re-reading my blog I noticed my symptoms actually had picked up in January.  She looked perplexed.  I explained “I write an anonymous blog about my health problems and experiences”.  Then she looked like I’d said a dirty word.  Oh dear.  Well, she’s one of those.  The genetics med guy I saw was actually very happy to hear I wrote a blog and had a small community of people I could turn to for support.  “We all have sort of complex or mystery illnesses, so we share a lot of the same challenges” I told him.  And speaking of the genetics guy, at my GI appointment I mentioned I had been diagnosed with EDS/hypermobility disorder since my last appointment with her and said I’d been told it could have GI manifestations.  “I don’t think so” she said and looked it up on the computer.  Based on one broad couple of second search, she said “no”, except for something she said by long special name, and I said “something vascular?” because it had angio in it.  Again, she made the face.  I’m sure she took this as evidence that I know too much, which is of course totally illegitimizing if you’re a patient.  You’re not supposed to know what “angio” means!  You must be a hypochondriac, even though you’ve lost over 10 pounds since the last time I saw you…. (oh they have ways to explain that too.  I had a GI doctor who grilled me on eating disorder questions when I had lost 35 pounds at the start of all this, then at a follow up appointment his staff suggested I was using laxatives).
Just to show you what my soon to be ex-GI doctor missed in her 3 second search, here are some highlights:

So, I had resigned myself to her being what I call a vending machine doctor, i.e. one who writes my scripts and does little more than that.  But it seems she can’t even get that right.  I left messages about the script, which a resident called in while my doc was on vacation (after just having come back from a quite lengthy conference) and which has no more refills after today.  No call back.  She should be back from vacation.  Maybe she took a post vacation vacation.  If I had to guess what makes someone choose GI, I’m leaning towards money.  I did a little research, it’s one of the better paid specialties behind things like spinal surgeon.  What makes a GI doctor?  The ability to deal with poop and a desire to make some serious money for writing scripts for motility drugs and PPIs.

*Sock drawer puzzle:  Cathy has six pairs of black socks and six pairs of white socks in her drawer.  In complete darkness, and without looking, how many socks must she take from the drawer in order to be sure to get a pair that match?