over done

Ok, so I may have gotten a little manic after doing the medical record sort.  It is done, which is great.  But I’m done too.  What did I do?  I returned a shirt I had gotten for my husband at TJ Maxx – exchanged for one for me.  He’ll get one, but he needs to come with.  He’s a big guy and how the clothing is cut makes a pretty significant difference in whether or not it’s wearable.  Then off to the pharmacy, which was packed.  Then to the grocery store.  Which was not packed but nutty – there’s a storm coming and I got there as the commuters were arriving, making quick mad dashes hither and thither.  Now home, moved half the food out of the fridge in the apartment across the hall (did I mention we had no power last night because an outlet shorted?  Yes, I believe I forgot to post that….power’s back on but it was a warm, dark night).  Brought in the groceries and got the fridge thing sorted out, took out the recycling.

And like a total fool, I was still thinking of the dinner I was planning to make – but you know what?  It’s just not gonna happen.  I have cramps, I’m not just done, I’m overdone.  So I’m just going to sit here and not do much of anything while the celebrex kicks in.  When my husband gets home, I may cheer him on as he prepares turkey wraps and orange chips* for dinner.

What a day off!

* = orange chips are cheddar and sour cream crack by Ruffles.  I am utterly addicted to them.  When I’m premenstrual, I NEED orange chips (plus PMS basket, see below).  I’ve convinced myself these are medicinal.  They have high sodium (mine’s low) and potassium, so I figure those plus the water I am chronically in need of is about as good as gatorade, but so much yummier.

cvs basket filled with dark chocolate, candy, kotex, and water - a.k.a. "P.M.S. basket"

PMS basket

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!

“The old people scare me!”

I was at the lab for my glucose tolerance test this AM.  While I was having my first draw, a woman and a child came in.  I only knew they came in because the kid was so loud.  Random loud kid noises, then I heard it say “Why are there old people here?”  It went on to say “I’m scared – the old people scare me”.

This went on for some time, interspersed with the child skipping about and leaning on various things perfectly happily, then stopping and saying “I’m scared!” in a sort of sing songy, anything but scared voice.

This kid looked to be about 8 in size, but all other signs of maturity pointed at 4.  While the scary old person was having her blood drawn, the child was thudding about in a chair not far from me.  Her mother finally started trying to engage her – by reciting the alphabet.  “A is for….” mom said.  “Apple!” the child yelled triumphantly and then continued “B is for Bacon!  D is for Donut!  F is for….FRENCH FRIES!!!”  This went on, with letters in a sort of loose order but always immediately preceding some food, until the phlebotomist announced from behind the partition (where she was still working with the scary old person) “Ooh, you’d better stop, you’re making me HUNGRY!”

Now, before this story continues, let me just say I was approaching 1/2 hour after drinking the 100 grams of orange flavored heartburn inducing glucola.  I’d been fasting for 13 hours (except for my sugar drink), I had over two hours of fasting to go, and had had no coffee or cigarettes this AM.  Oh and I’m premenstrual.  Bearing that in mind, what do you suppose my reaction was to an obnoxious, immature 8 year old who was “scared” of old people and yelling about food and whose mother was totally checked out?

Yeah, not nice.  Taking the phlebotomist’s comment as my opening, I turned to the mother and said “Actually, you know what?  I’m fasting and will be for the next two hours, so really, please, STOP”.

Some time later, well after this child nearly beat the phlebotomist to a pulp during her stick and had left (I noticed, without a piece of candy) another mother/child duo entered.  This child looked a bit younger than the first.  And he was acting like a child – he came over and stuck his face in my husband’s space because he wanted to see the iPad.  He had to be told three times not to touch this or that.  And he cried when they stuck him, but he didn’t beat up the phlebotomist, he was curious and didn’t understand adult social boundaries 100%, but basically, he was just a kid. BUT, he didn’t set off my “obnoxious child” sirens like the other one did.  I’m thinking it was the “old people” comment that did it to me, and the fact that mom #1 hadn’t said one word to the kid about it, no matter how many times she repeated it.  The list of food and the merrily called out declarations of being scared about the test, well, I’m guessing that those wouldn’t have stuck out as being quite so horrible to me if not for the “old” thing.

live free or, fuck you

Some details of a recent news story out of New Hampshire really bother the hell out of me.  I’ve highlighted those details below.

Gov seeks probe after death of N.H. woman whose power was cut off
June 25, 2010 04:41 PM, By Brian R. Ballou and Martin Finucane, Globe Staff, and Alex Katz, Globe Correspondent (
full story at the Boston Globe)
SALEM, N.H. — The governor of New Hampshire called today for a speedy review of power company shutoff policies statewide, saying he was troubled by the death, after her electricity was disconnected, of a Salem woman who used an oxygen machine.

“I am terribly saddened and troubled by the tragic situation of Kay Phaneuf, a woman from Salem who depended on an oxygen machine and whose death may be connected to a decision by National Grid to terminate her power for non-payment,” Governor John Lynch said in a letter to the state Public Utilities Commission…..

The Public Utilities Commission is investigating what happened to Phaneuf. The commission sent a letter to National Grid Thursday seeking a number of records, including records of the Phaneufs’ billing and payment history, copies of past due and disconnect notices, and a chronology and detailed description of what happened on Monday….
National Grid spokesman David Graves wouldn’t comment on the status of the Phaneufs’ account but defended the company’s policies on shutting down power to people’s homes.

He said the company sends out notices on bills that are a month late telling customers they need to submit overdue payments. After another month, they send a notice telling customers that they must pay or face shutoff of their power. After another two weeks, they send a notice saying that shutoff is imminent unless payment is made by a certain date.

Graves said the state of New Hampshire also requires that a customer, if they have a medical condition that requires electricity in the house, send a letter to the power company every 60 days. That letter ensures that the power won’t be shut off in case of non-payment. Graves said National Grid’s own policy is the letter only needs to be sent every 90 days. He wouldn’t comment on whether a letter had been sent in Phaneuf’s case.”

Because life isn’t difficult enough for someone with a chronic medical condition, they have to remember to get a letter sent out every 60 days or risk DYING.  I’ve never really had a whole lot of respect for New Hampshire.  To me, they’re sort of like the South Carolina of New England.  But really New Hampshire?  Every 60 days?

Just do it, sort of

I’ve been thinking for some time that I need to get in a pool, and not with a twitty physical therapist.  On my own, not using my unreliable ankles for pivots, and not doing more than about 15 minutes at a pop.

However, this is not as easy as it sounds.  I’ve looked.  Health clubs with pools are, for some reason, scarce – at least in my area.  There’s one.  It costs a buttload.  The Y?  Looks better, a little more affordable, so I looked over the programs and pool schedule.  I’m not loving it.  I don’t want to swim with kids.  I don’t want to do laps.  Maybe I can do pool exercising for grannies (now called something vague like “easy does it, formerly senior swim something”), that looks promising.  Except you can’t schedule in advance.  Classes are on weekdays at 11:00 AM and would be participants need to show up an hour before to book in.

Er…. no.

I’m not giving up.  I’m going to call, and failing that, show up and ask.  Here’s what I need:  I only want to use the pool.  I want to use it to paddle around in, not doing laps but also not swimming with toddlers.  I want to do this in the early evening or on the weekend but I will make time in my work day schedule if necessary.

While I’m hoping this will be possible, I’m not running out and getting my legs waxed just yet.

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”.

Syncopest

On Friday, I will be passing out.  A little back story…

I pass out.  But to assume this means a clean and simple faint would be folly.  I pass out slowly and gross.  It feels like it takes forever.  I get sweaty.  I’ve been told I turn white and/or greenish.  I moan and groan, which is usually me trying to vocalize things like “get this blanket off me”, “cold wet cloth, please”, or “I think I’m going to puke/poop”, or really just that visceral “unnnnngg!” that loosely translates into “make it better please, oh god please”.

It is ugly.  Once it starts, it doesn’t stop easily – usually it ends with me unconscious and jerking (so I’ve been told) and/or going stiff.  “I practically had to break your legs to get you off the toilet” ex-husband doctor told me after I passed out on the can.  He had a lovely bedside manner (he was an ER doctor – not to malign the lot of them.  I’ve known some lovely, kind ER doctors.  Like, two ;p)

Now this shit all started when I was 8.  Or I at least remember passing out when I was 8.  Then again two more times in grade school.

  • Once at home when I was ill and looking for food.  I had stood up on the pantry counter and was rummaging around in the back of the shelf for where I was sure there was a cup o’soup and I came to on the floor on top of the toaster and a fork.
  • On a historical site field trip in 6th grade.  I was feeling unwell and told a teacher that I thought I needed to eat lunch.  I was told that we’d be eating soon and that if they let me eat lunch, then everyone will want to eat lunch now.  So I passed out in Paul Revere’s house.  I woke up on Paul Revere’s bed.  I have since learned that it’s not his bed or his house, but a reconstructed house on the site of Paul Revere’s actual house.  It sounds so much funnier to say I passed out and woke up in Paul Revere’s bed.

Then high school.  Lots of passing out:

  • At a restaurant with friends.  The staff brought me food at my friends’ request, salad with french dressing.  Then they threw us out because they thought I was on drugs.
  • Strapped upright into a seat on an airplane as we were landing in Europe after a transatlantic flight – the retching and groaning started and my mortified little brother tossed the barf bag at me.
  • At lunch.
  • After a bad IV stick for an upper endoscopy.
  • After a blood draw for mono.

College (9 year period):

  • At my boyfriend’s parents’ house after dinner.
  • At a subway station after a dinner out with friends.  A female friend was helping me walk to catch the train (last one, then we’d be stranded in the city) and some guys coming out of a nearby sport venue surrounded us and called us “dykes”.
  • In my dorm room after an awful lot of pelvic pain.  I was later told it was an ovarian cyst.  The student emergency response team kept asking me what I’d had to drink.
  • At work as a campus safety escort walker, later told it was “mittleschmertz” or somesuch bullshit.
  • Out at dinner with a nurse friend (“Jeez, why did you call 911?” I asked the nurse friend later.  “Because you were out for a long time and when I pulled your head up off the table, your eyes were rolled all the way back in your head.  And you’ve got BIG eyes!”).
  • On the can, Dr. Husband helped with that one – aside from the gruff manner, it was honestly the best response to my passing out.  Got me (a) out of the upright position I was stuck in and (b) onto the bed with my legs up (c) without  hurting me and (d) didn’t freak out and call 911.

Grad school (9 year period):

  • Dinner with my sister.
  • New Year’s party at a friend’s house, horrible – I was with my boyfriend, who was a type 1 diabetic.  He checked my blood sugar “It was below 50” was all he’d tell me later about it.  He got me the HARDEST piece of chocolate I’ve ever put in my mouth to “bring my sugar up”.
  • At my apartment after I’d been up late working at the computer.  Had to pee, but also was feeling gross.  Stood up, and thought “fuck, if I go lay down, I’m going to wet myself.  I’ll pee first”.  You know what?  BAD idea.  That one got me a concussion and a super cranky ER nurse who kept asking me what I’d had to drink that night.
  • At home after dinner x 3.

This year:

  • At home after dinner in August.
  • At the dentist’s office – a very near “near faint”.  I had medicated in advance and I was whisked down to a flat position and given O2.

The high school stuff  happened in front of medical staff twice so I was worked up for seizures.  I couldn’t drive because they were so frequent that every time I would get close to going the required amount of time without a “seizure”, another one would happen.  Mind you, my EEGs were normal.  But they called ’em seizures because I had gone stiff and had a few jerks, and so I was stuck.

I’ve spent a good deal of time trying NOT to pass out.  Part of why I don’t go out and do much socializing these days is that I feel so fatigued and shaky so routinely, I’m about this close (hold finger and thumb together) to a faint.  The feeling is terrible.  And people are terrible at dealing with it.  No, really, they are.  The diabetic (who had passed out plenty of times himself) with the super hard chocolate was the same guy I was with the night of  “pee or pass out”.  After I staggered into the bedroom and fell (hitting my head off a large chest of drawers, the door, and a wall on my way down), he pulled me up by my stiff arms and onto the bed.  I was Soooooo sore.  I complained bitterly that my arms were inexplicably sore many times before he told me what he’d done.  Anyhow, so there’s that.  My basic distrust of people and them working hard to earn it.  And there’s the whole food thing.  I’m more likely to pass out if I haven’t eaten, but conversely, I am also likely to pass out after a big meal.  When, what, and how you eat can be more readily controlled in your home, or at least when you don’t have to do things by committee.  Like with inlaws.  If I’m having a blood draw or an IV placed, I warn them. I lay down.  And I take a lomotil before I go because it’s got atropine.  Yum.  I’m not sure how legit this use is, but the neurologist who tapped my spine in 2002 (lyme) gave me some pre-procedure and hey, I didn’t pass out.  I nearly did, a nurse had to hold my legs up on her shoulders for quite a while, but I didn’t pass out even though I had a needle in my spine and it wasn’t a very easy tap.

And so, I have spent a lot of time and energy since high school trying to find ways NOT to pass out, or at least not to pass out in public (outside my house counts as “in public”).  I got the call today that the tilt table test my nPCP ordered is for Friday.  This Friday.  I was thinking maybe next week, or the week after.  Plenty of time to psych myself up for it.  But blam, it’s in three days.  Three days or the week after July 4th, when my inlaws are coming up.  So it’s in three days.

Ok.  I can do this.  I’ll be all hooked up to a monitor.  And strapped in.  And they’ll put me down when I pass out.  It’s still hard to think about intentionally passing out though.  Wish me luck.

Balancing

Since I’m moving sloooow this morning, I thought I’d poke around in the blogosphere, and hey, looky here!  I just ran across a pretty neat blog called “FWD/Forward: Feminists with Disabilities For A Way Forward” via a great post by contributor Chally, which touches on some topics I’ve had quite a bit of experience with as both a teacher, a student, and a college staff member.  What is “doing fine” for someone with a chronic illness based disability?  Especially with one that robs you of your energy.  Some interesting questions are raised:  Do you go for the flat out pace that is expected (demanded) of people by society?  Do you pare it down and use your bone deep understanding of personal pacing and balance to ward off feelings of not living up and of being judged internally and externally for it?

I add the category of family to the mix.  As women, we are expected to accommodate – the primary zone for this agreeable accommodation is family (not because of nature, but because despite advances of women outside the home, western social norms insist that home and family are “woman’s domains” – any doubt of this can readily be tested:  who plans birthday and holiday celebrations?  Who plans meals, grocery shopping, cleaning?  Yes, men do “help” more often but until they stop “helping” and just “do”, I argue that these areas are seen by men and women as primarily responsibilities of the woman).  So how do you find your balance among these areas of responsibility, of demand, where you as a student, worker, mother, daughter in law, wife are expected to live at a pace defined by the ability to consistently and (minimally) compliantly rise to an impossible level of work?

No, seriously.  That’s not a rhetorical question.  How do you do it?

Say “ahhhhh”

Every once in a while, I just need to go look at something pretty.

picture of city skyline from beach

...add ice coffee and a shady bench. Relax.

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.