captcha? I don’t even know her!

Holy cow, the Blogspot captchas are getting really out of control.  I consider my vision to be decent, and by the eye doctor’s accounts it’s just fine (no accounting for floaters in the eye doc’s office).  So I wonder what people with actually bad vision do when they encounter the little “prove you’re not a robot and enter the ‘text’ you see here into this box” thing.  What I do is scrutinize the thing, then cautiously type the letters and numbers in, wondering if capitalizations count, and wishing the new blurry house number pictures would just go straight to hell.

screenshot of a captcha field in blogspot

wtf?

I’ve tried the audio. A massive mess, when it does play, it plays a synthetic voice with noise, echo, and an overlapping loop of what can only be described as cacophonic nonsense.

So, if you have a blogspot/blogger blog and I sometimes don’t comment, it’s probably because I tried but had to give up after too many attempts to guess what I was supposed to be typing.  I’m hoping the NFB sues them, maybe they’ll make it more accessible if that happens.  Until then, I’ll go on trying but boy do I wish there was a better way to screen comments!

what are you waiting for?

Waiting is a common enough theme in this blog that I probably should make a category or at least a tag for it.  Here are some of the things I’ve been waiting for lately.

  • Waiting for Human Resources to process (i.e. find ways/reasons to deny) my health accommodation requests.
  • Waiting for an appointment with my primary care (this Wednesday) to go over the most recent documentation request from HR – I made an appointment  this time because of all the fruitless waiting I did last Fall with the initial set of accommodation physician documentation forms.
  • Waiting for results from my rather difficult to time 24 urine and “while you’re symptomatic” blood draw for histamine by products.  I have an  appointment this Friday, which I am trying to change to earlier so I don’t miss quite so much work, and so add to this list…
  • …waiting for the Endocrine clinic at B.A.T.H. to call me back.
  • Waiting for an EMG (also this Wednesday) on my totally screwed up right hand/wrist, which I totally screwed up by overuse at work and by waiting to too long to get it checked out.  It’s now not just an acute injury.  It’s a new trick for my body to do.
  • Waiting for an appointment with some genetics doc (next Wednesday) …this came out of the January appointment when I popped my hip out of joint getting out of the car, ended up being tacked on to the schedule of a Rheumatologist my primary care shares his office space with sometimes, and referred for checking out of the whole super bendiness/spontaneous dislocating/subluxing (subluxating?) stuff.  The appointment is to evaluate me (genetically) for Ehlers-Danlos syndrome.  I haven’t decided about whether to mention testing for a RET gene mutation – maybe I will ask my primary care about this on Wednesday.

What made me think of waiting was a post on Professor Lisa Gualtieri’s blog, which seems a decent blog.  I found it through an old article in the Boston Globe which was a recruitment call for patient bloggers for a survey research study (now closed, but a slide show of findings is here).  In her post Must waiting be inherent to medical care?, she gives what I guess can be called a taxonomy of waiting which patients experience.  Yup, seems right.  My least favorite part is the final step, “loop”.  That one kills me.

My strategies for waiting to be seen once I’m there include the following:

  • My primary care’s office is always backed up.  However, they are very good about letting you know how far behind they are if you call ahead.  I find this to be a good solution, and I respect that they are behind because my primary care has a lot of complicated patients and because he doesn’t rush through appointments with us.
  • I bring something to read, something to work on, something to play with, or someone to talk to.  I have played countless games of solitaire; written numerous pages of journal entries, letters, or poems; drawn on my iPad; listened to downloaded podcasts or episodes of shows like This American Life (interesting and informative).  It helps.  I feel bad for people who do not have access to mobile devices or engaging diversionary materials (e.g. books instead of insipid waiting room magazines), which help pass the time.  I have often wondered about starting some kind of book/tech drive at waiting rooms – E.R.s, O.R.s, and ICUs specifically.   One day, when I am not working, I  think this will be a project of mine.
  • I manage my expectations.  I do not expect to be in and out fast.  I think that this is easier, or at least comes more readily, for those of us with chronic illnesses.  We sort of learn to discard the stresses that we can, because there are so damned many of them.  If we let a one hour wait in the doctor’s office drive us over the edge, we’d have no resource left over for all the other things that are stressful in our lives.  This isn’t to say that it doesn’t get to us.  It does, but I think that if one were to calculate a “per visit freakout” ratio, one may find that the people in the many years chronically ill group inclined towards the lower side.  Dunno for sure, just a hypothesis.

So, what are YOU waiting for? How do you deal with waiting in medical contexts?  Have you found that your chronic illness has made you better or worse at being a patient patient?

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

Good site

Hey, it’s another cool site. Bad Cripple by blogger William Peace. So far, I’ve spent most of my time on there reading up on his experiences with the Obama campaign and accessibility. It’s making me want to go and fix up all my posts with pix (I’m certain I don’t always provide alternate text). I’m looking forward to reading more by William and I encourage you to check out his excellent blog.

Nice site

Hey I just ran across a great section of what is looking like a pretty neat site, IBS Treatment. The section I came in through has patient reviews of various IBS drugs, with both an American version and a UK specific listing. The latter is a bit small, and I don’t know if this reflects a true low number of UK specific IBS drugs or if the database just needs to be grown. To write a review, you must be diagnosed with IBS. The site is run by Sophie, who also has an IBS blog.

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.

occupied

Thank you to Catherine at Women 4 hope who listed No Harm in her five new blogs for Blog Day which I missed hearing about entirely due to my complete self absorption at this time of year. Classes started last week – earlier every year it seems – and I start teaching this week. My blogging here has been slim while I’ve been prepping the course material. I’m really hoping to steer some of the students towards a health-psych project since it’s a field which is gaining popularity, it’s a new program in my department, and it is truly interesting. There’s even been some high profile news stories in this general area, such as the report on the study of implicit bias effects in doctors’ treatment recommendations for chest pain patients in the ER.

There’s only so much you can cover in a short intro research course, which means most of the really interesting stuff is out. Still, the last time I taught it I had a group of young women who did a very nice project on students’ attitudes towards mental illness and the effects of positive or negative portrayals of mental illness (and the mentally ill) in the media. Theirs was the best design and had some lovely, interpretable, and interesting results. It’s always gratifying to see the students pull off something like that given the constraints of the course (which are considerable, believe me).

On the bright side, at least this year I was reminded in time to celebrate Talk Like a Pirate Day on September 19th (thanks to Bubblewench).

diurese this

I noticed two recent hits on this blog from people looking for the same topic. I mean exactly the same. Both were referred from Google searches for what the lay person’s term for diuretic is. Two different IP addresses even. How odd. I find myself wondering if someone referred to a diuretic in a House rerun or something.

Anyhow, since two hits count as a significant portion of the site’s traffic, and since I’m a sucker for language, I’m giving my vote on this one. I’m going with “water pill”. It’s delightfully old fashioned, isn’t it? Sort of like “the vapors“.

with coffee spoons

The Spoon Theory by Christine Miserandino is an excellent, I mean truly excellent essay about “what it’s like to live with sickness or disability”. While reading it, I thought of T.S. Eliot’s Prufrock measuring out life with coffee spoons.

The essay is linked through But you Don’t Look Sick, (oh another great name) which I just discovered was founded by Ms. Miserandino. Well done Ms. Miserandino!

For anyone who is interested in knowing what it is like to live without the luxury of good health in a world which presumes all are well (or well enough), I offer more words from the poet as advice. Do not ask what is it. Let us go and make our visit. Read the essay.