adenomyosis

“That’s just a word for ‘fibroids’,” my neurologist said at my first appointment with him summer.  He had been reviewing my medical history.

    A bit of an excursionary side note here:  I always feel vaguely guilty when I list my medical conditions and/or recurring symptoms – like I have no valid right to claim to have them, like I am heaping it on, like I am writing out the invitations to a pity party.  Or at least, that I will be seen this way.  Why ever would a patient experience those feelings, one might ask.  I can tell you, they didn’t arise on their own.  These are iatrogenic, at least in large part.
    I used to try to keep it to only things I had a diagnosis for, a name for.  “Endometriosis, GERD, Migraines, IBS-D”  That’s a short list.  Again, because of the response of doctors.  “Who told you have …..” was a response I heard one too many times.  Interestingly, I’ve heard it for two things with confirmation – endometriosis and Lyme Disease.  “Who told you you had Lyme?!” one doctor said in an abrupt tone.  And this is when I thank my lucky stars I had the forethought to take a picture of my lyme rash.  The endo was questioned until I could firmly reply “It was confirmed by laparscopic surgery”.  But until I could say that, it was considered by some doctors a questionable diagnosis.
    So I know from those two test cases that there is a good chance I will be questioned, sometimes rather ham-handedly, about what I put down on that form.

The neurologist was not the first to question “adenomyosis”, a diagnosis I was given in 2007 after my last lap for

illustration of uterus with multiple fibroid tumors

Fibroids, from http://www.nlm.nih.gov

endometriosis.  The first one was a GYN I tried out briefly.  “That diagnosis can only be made after hysterectomy” I was told by the stressfully thin looking impatient young doctor.  I told her that I was just reporting what my last GYN had said, that he had been the one doing the surgery, and that he had made the diagnosis based on imaging and his observations during the lap.  At this, she bristled with contradiction, as if I had personally insulted her.  Really, I greatly dislike this sort of doctor, well to boil it down -I dislike this sort of person but especially so when they are in a person-caring profession.  No one is as smart as me! seems to be their motto.  Needless to say, she did not remain my GYN long.  Moreover, her estimate for recovery time post-hysterectomy was an unqualified “2 weeks”.  No “every patient is different” or “it depends somewhat on what we’ll find and need to do when we’re in there”.  And this, ladies, is why I vowed never to go to another general purpose OB/GYN again.  Any OB/GYNs out there reading this who don’t suck, I apologize for painting you all with a broad, drippy brush but time and again in your offices, I’ve run into various versions of this soul scouring combo of ignorance, arrogance, and dismissiveness.  I’ve had it with the bad apples in your bunch who should just stick to pap smears, breast exams, handing out birth control, and perinatal whatnot.  I’ve had it with being a pinata for someone who decides to engage in a farce of diagnostic gynecology despite having a clear lack of preparation for that sort of thing.  It may come down to a flaw in the general OB/GYN training or it might have to do with a selection bias – too many of a certain kind of person who chooses to go into OB/GYN (babysniffers?).  Whatever the reason, the field is rife with men and women who do more harm than good with it comes to dealing with gynecological pathology in a general practice rather than referring the patient out to someone with more experience.

Illustration of a uterus with intramural endometrial infiltration, adenomyosis

Adenomyosis, from http://www.med.nyu.edu

Back to the neurologist’s comment.  It turns out that no, adenomyosis is NOT just another word for fibroids. They are distinct entities, with some significant implications if one if mistaken for the other.

And as for what I put on my medical history forms now – I still go back and forth.  If I’m feeling like this doctor needs to know everything, I list by name what has been confirmed with objective tests or impressions (and yes, that includes adenomyosis and migraine) and for the others, I write descriptive symptoms, e.g. “chronic joint pain” “chronic fatigue” “nausea”.  And mostly, these days I just try to avoid situations where I would feel uncomfortable doing anything else.

talk like a caveman

Not long ago, I was discussing misspeaking with a colleague.  It’ a big topic where I work, since most of the students in our program have language related disabilities.  Consequently, there are a lot of misproductions in both spoken and written language.  My background – which includes way too many years in a cognitive psych PhD program, way too many years in a Linguistics PhD program, and growing up with my sister who almost certainly has CAPD – has prepared me to take these in stride…when they come from other people.  Not when they come from me.

I’m one of those language people.  I don’t speak 20 languages.  But I do break down linguistic structure like nobody’s business, and always have.  I learned out to read and write at an early age (doing both by 4, with some “creative” spellings and letter forms…I thought the number of horizontal lines on a capital E was set at three or more, my Es often looked like combs standing on their ends.  I also inverted lower case b and d a lot).  I used to read dictionaries for fun as a little kid.  I’d get giddy looking up etymologies of words.  To balance out all that boastfulness, let me add that I suck (outloud) at math.  I transpose numbers and functions.  I pick up math concepts which are presented through calculations and equations like molasses goes uphill in January.  Also, I am not musically inclined, although since 2005 my brain’s been on permanent iPod shuffle much of the time.  Not sure what that’s about.  Anyhow, just because there’s music in my head doesn’t mean I can play it, sing it (well), or even reliably tell if certain chords differ.

Alright, so that’s a long walk to tell you that I’m not simply boastful and think I rock at everything.  I’m just good at language.

And yet, when I am premenstrual, I talk like a caveman.  Not only do I have word finding problems – “hand me the um, thingy, with the thing…you use it to put things in and it’s, uh, over by the thing” – but find I also have a problem with morphology.  Morphology consists of things like the plural markers on nouns; markers for tense and number on verbs; how we make comparative and superlative forms of adjectives and adverbs (e.g., “more quietly”).  So far, I don’t think this phenomenon has made its way into my pronouns.  I still manage to keep “he/him” etc. straight.  It had been confined to or at least predominant in the regular morphology (word structure) and not to the irregular.  Until today:  “closeder”, as in “more closed” or “less open”.

Abbreviations, etc.

As requested by the Queen.  There are terms I use sometimes that need some ‘splaining.

Some are medical terms, probably out of date by now – most of which I know because I had to learn them to decipher doctor scribble way back in the day (1990s) of handwritten everything (do they still handwrite and transcribe all orders?).  Also, my mother used the abbreviations as short hand in notes to us when we were growing up. I told you, they tried to make me one of them. Some are idiosyncratic terms coined by smaller groups, sometimes as small as one (me).

Here’s some guidance to them.

Idiosyncratic (and not) Terms and Abbreviations I use:

ABx = antibiotics.  I took a lot of them when I was being treated for Lyme Disease.

Babysniffer = a person (most often female) who is crazed for babies and all things baby related.  They obsess on it.  They seem to sniff out babies from miles away.  They are creepy in that they tend to say things like “Oooh, he’s so cute I just want to gobble him all up!”  See Dot from Raising Arizona.  Usage note:  A babysniffer is not the same as someone normal who wants to have kids or someone who expresses a non-pathological delight in a baby.

B.A.T.H. or “BATH” = Big Ass Teaching Hospital.
BI-BATH = Best Itty Big Ass Teaching Hospital. One of the orphans of the Big Northeastern City’s mega-BATH conglomerate, affiliated with Ye Olde New England University Across the River.

BBM = Big Bad Migraine.  The kind with all the trimmings – photosensitivity/photophobia, hyperacusis and phonophobia (I swear the sound of bubbles in an open soda can will send me over the edge when I have this), nausea, aura with a scintillating scotoma.

BCPs = birth control pills.

CMD = crazy making drug.  E.g. “My doctor put me on Zonisamide for my migraines, I looked it up and it says it can make people suicidal.  That’s one hell of a CMD.”

Dx = diagnosis.

F.A.S.T. = public health stroke awareness acronym for stroke assessment – Face, Arms, Speech, Time.

G.P. or GP = Gastroparesis. When your stomach (gastro) don’t move right (paresis). Leads to all sorts of feeling bad, malnutrition. All around sucky. There are several types based on presumed or actual cause, my favorite being “idiopathic”, which if observation is correct means “I, your doctor, am too much of an idiot to care why your gastro is paretic, so fuck it, let’s just say it’s idiopathic!”

‘HO = House officer (it may come up), but when said with that certain inflection, person who doesn’t answer his/her 80,000th page (this time it really is for something important, really).

Hx = history.

Judy = As always, with the caveat that I’m sure there are many people out there named Judy who are not like this.  However, I have encountered just one too many Judies in my lifetime – as either coworkers or office staff I need to interact with and who all strangely share a certain set of ungodly frustrating features which include

  • slow processing speed and limited verbal comprehension ability (which I can handle if the adult who has these traits is aware of them and has developed skills to compensate…I have a hard time with people whose apparent challenges are intrusive, pervasive, and yet exceptionally opaque to them).
  • very stereotypically feminine attitudes and manners including what I call “man pandering”.
  • a tendency to be easily overwhelmed by the mundane and routine tasks of their jobs, again in that oddly opaque way where they THINK they are doing a bang up job but their coworkers are ready to flog them for their ineptitude.

Manses = term for moody, dreary, and sometimes outright cranky phase of my husband’s mood cycle.

Minipause or mini-pause = Possible reason for my night sweats and BBM in the weeks after my hysterectomy.

PI = primary investigator or principal investigator.  MD/PhD or just plain ol’ PhD.  A very well educated but not usually well socialized person who has managed to get a grant to do something that they (probably used to) love.  This person’s job is to manage or oversee management of a research project.  When used in combination with B.A.T.H., this person could reasonably be called “research overlord” and possibly should be since it is likely how s/he thinks of her/himself.

Purulent = the adjectival form of puss.

PVCs (you can look them up below too) = premature ventricular contraction/complex.  It’s described as feeling like your heart “skipped a beat”.  The ones I had that wouldn’t go away, those felt more like my heart was going in reverse for a good three or four “beats”.  Like sucking instead of pumping.  Not painful (for me) but uncomfortable and makes you overly aware of your heartbeat.  Until they go away and you stop thinking about them totally.  Until they come back.

TBI = Traumatic Brain Injury

more as they come up….

General References:

Medical Abbreviations

Prescription Abbreviations

NIH Medical Dictionary

Required reading

I just found a great site, linked in Dinosaur’s blog. It’s called “Multiple Sclerosis Sucks”. The writing is honest, informative, and entertaining. I liked the pages How a Scientist Thinks, Statistics, and You Be the Research Scientist so much that I may suggest them for my upcoming research method course.

On this site, you can find affirmations of the following sort:
When life gives you lemons, find somebody you despise and squirt them in the eye.

As if this weren’t enough to endear the author to me for his ability to pull together exactly the right words, I soon found a page called The Semiotics of Chronic Illness. Here’s how it starts.
Semiotics is a subdiscipline of linguistics devoted to the study of how we communicate both verbally and nonverbally using signs and symbols. Being chronically ill is something you can choose not to talk about, but even if you don’t talk about it you will inevitably end up revealing your chronic illness through body language, gesture, and facial expression. You’re going to constantly be sending out signals whether you want to or not.

Go check it out and enjoy.

A timely article

Since I was just writing about compliance (to medication regimen), Medea, and Large Marge, this seems to be an appropriate reading for the day. I’m supposed to be writing a lecture on hypothesis development and testing, but ow.

And my attention is less than razor sharply focused.

I’ve gotta say, after looking over the abstract, I find myself quite curious about the “pictorial blood loss chart” used in this study.

Also, I can’t help wondering – where’s the imaging man? Here I am looking at stuff on muh-muh-muh-My Mirena (see, it’s not just the Macarena it fits with – it’s a quite musically handy word) and finding a long term study on side effects of the blasted thing and it seems they didn’t collect data on ovarian cyst formation in women using The Device.

Can I get a hearty wtf?