“don’t say I never gave you anything”

I took Monday off to unpack and do some of the many little things one needs to do after even a smallish move.  I came back to work to find a rather significant mess had been made of one of the jobs I do.  It was covered in pieces, which would explain some of the mess.  Part by a coworker and part by our boss.

“Oh she was out of control yesterday” the coworker told me regarding the boss.  And she came in sick.  Not just a little either.  “We were at your desk and I looked at her at one point and she was all red, all up and down her face and neck…”

Well you would be red too if you had scarlet fever.  Yes, boss-lady disclosed later in the day that she had scarlet fever and a pneumonia.

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“why don’t you just…”

…not tell me how to do my job when you have no clue.  When it’s asking for way too much, and when it comes from someone who doesn’t have a good idea what that job entails, it really is something I do not appreciate.

This week’s “why don’t you just” comes from a faculty member who thinks that the staff should just come in extra early (when we stay extra late nearly every night) whenever one of her students will need assistance, you know, to ensure that the full amount of assistance is given, no matter how long it takes.  “But we promise them!” she tells me sternly.  “I don’t see what the problem is,” she adds.  Yes, clearly she does not.

The staff are overworked.  They do not have enough resources to do even the jobs that they already do even with the extra time they commit in order to do them, often well and always sufficiently.  E.g., with a few exceptions for doctors’ appointments (my own and others’), the staff members have each come in early and stayed late most days this month.  And yet this woman thinks we can just do…well, more!   Come in early more, and “just go home a little early.”  My telling her that it doesn’t work like this fell on obstinately deaf ears.

The thing that is bringing me down about this is that the person who I’ve been having this discussion with is someone I thought was decent – by which I mean someone who is not so ignorant and short sighted that she couldn’t see that her own experience may not be a sufficient basis of judgment for EVERYONE else’s business.  If this person can think like this, then god damn, imagine how the not good people think?

It brings to mind a saying of my father’s:  “Why don’t you just stick a broom up my ass and I can sweep the floor while I’m at it?!”

hips do lie

Hip pain.  Got it again.  The left hip is the real bastard.  The one that came on like a tidal wave one spring evening at work in, god, was it 2005 or 2006?

I started feeling like my legs were tired, like I’d walked miles.  I thought “ok, time to get going” and gathered my stuff to leave.  I didn’t get far before I felt this intense pressure-like pain in my hip, like a cramp starting but deep inside the joint.  I thought I needed to adjust my gait a bit, smaller slower steps and just walk it off.  But it got worse.  By the time I made it the next few yards to a short retaining wall, it felt like my hip was going to pull off of my body – an angular pressure with the top lateral part of the hip feeling like it was pushing outward and away from me with the interior medial part feeling like it was pushing inward towards my groin and other leg.  I couldn’t stand, and eventually couldn’t even sit.  I had to lay down in this very odd pose and keep calling friends on my cell phone for help.

And so started the now “chronic” hip pain.

Just like every other chronic thing.  Started out as a “wow, what the hell is THAT?!” feeling and, as a result of non-specific or negative tests which didn’t point to a cause or a treatment, has become something my body just does now.  I manage it through inactivity, ice packs, and NSAIDs.  This works pretty well – although what the level of inactivity is doing to the rest of my body is probably not great – e.g. being all hypotensive and whatnot, I really should try to keep some level of activity up, keep those leg muscles in good working order.  But the practical issue is that I need to NOT be in pain, because when I’m in pain I can’t get around.  And that means not working.  So I take what is for the immediate time the only solution.  That I may be paying for this with an increase in fatigue-related systemic symptoms is not lost on me and is something I can get quite unhappy about if I stop and think about it much.

stylized x-ray image of left hip, 35 year old woman with recurring lateral hip pain

my hip is a dirty liar

There are times though when my activity level is necessarily higher.  Like moving.  I didn’t carry anything heavy yesterday, but apparently I carried enough up and down short flights of stairs and across uneven floor boards to get the hip going again.  Do I mention the pain to my primary care on Friday?  (got a follow up follow up then, had been hoping it was a wrap up or at least a sort of chapter summary type visit)  I’m not really thrilled with that thought.  It’s not like I glossed over it in the history.  But if I bring it up as an acute issue or an exacerbated chronic one, I might send my doctor off on another flurry of referrals.  Which would be ok with me except I think they’d be useless.  Believe me, the hip’s been worked up.  The only thing that I can think of that hasn’t been looked at is the vascular side of things.  Yes, I’ve had the usual inflammation blood work, all nice and normal.  Slightly elevated ANA, but I’m told it’s nothing to write home about at the levels it’s at.  Apparently if you don’t have serological evidence of inflammation, ain’t nothing wrong with your blood vessels.  At least this is the message I have received from doctors.

Emotional first aid

This is what I call it.  “What is Dyspatient doing?!” my boss was apparently hissing in the front office early this afternoon after seeing me talking to a sobbing student in a private room, away from my desk.

Let’s back up.  I work in a post-secondary disability service office.  I am in charge of making sure that students with disabilities get their tests with the accommodations they have been approved to have.  Sometimes, things go wrong.  Like today.  The short version is a computer program ate a student’s test.  The student was, understandably, upset.  She was in fact very very upset.  Rather than have a conversation with her like that in front of other testing students, I ushered her out of the test center and had the secretaries bring her to a private room.  I then made some calls, tried to find out what happened, then what could be done, and how it could be done in a way to help make this all less horrible for this poor student.  After getting the details, I went to her and talked to her.

“What do you say when they get like that?” a staff member asked me later.  “I say I’m sorry that this happened, that I understand and that this is genuinely upsetting, and that it’s ok to be upset.  I offer her tissues and I tell her what her options are and I try to help her get what she needs to make a decision about what to do now.”

My boss, however, felt that none of this was anything I should concern myself with.  “Just send this over to the ADA officer” I was told she said while I was trying to calm this young lady down.

I do not accept this.  It was our screw up.  I was greeted by a round of massive buck passing by the department where the test originated – “the student must not have hit save” or “she should have told you there was  problem before she did XYZ (with the program)”.  No.  Not ok.  If the program is not designed to work with a student taking an extra long test (as students with disabilities are prone to do with minimally accessible tests), it needs to be fixed.  If the student didn’t hit the right set of keys in the right order and it ate the test, then clearly that is not a robust program from a user perspective.  Moreover, it is not a reasonable alternative to a paper test because a paper test is not quite so fragile.  We own the program, we put it into place, we set the parameters on it, and so it is our problem, and part of making that right (or as right as one can in that situation) is dealing with the student’s reaction to the problem.

I’m waiting for the boss to come to me with her complaints about this.  I’m sure they will surface eventually, probably when I’m super busy tomorrow and have to choose between saying what I feel with no time or brain space to apply the boss filter vs. saying nothing.

never fails

Why?  Why is it that the only times I get a pre-bed time night snack craving, it is invariably after I have brushed my teeth?  I’m all fresh and minty and programming the coffee maker, or just closing things up in the kitchen, or moving something off the coffee table and BAM, there they are.  The gourmet cookies, the fun sized snickers bars, the dark chocolate hershey’s kisses, the left over Italian bread, the meatball in the refrigerated spaghetti.  Saying “ahahahaha!  To hell with your dental hygiene and plans to go to bed at a decent hour!  Have a snack!  Do it!  Put me in your mouth!”

Normally, or at least often, I’d ignore that.  However, I’ve discovered that what I take to be whims of appetite (thinking “hm, that yogurt I didn’t eat at lunch looks kinda good” when I’m 1/2 hour away from leaving work) might actually be warning signs that I need to eat something.  I’m not sure of the strength of the correlation, however I think that it extends beyond food and into things like wanting to lay down when my blood pressure’s low.  I know, this doesn’t sound like a blog worthy revelation (but you don’t know this blog if you’re thinking that).  Ok here’s the part that I found striking.  It’s that I skip noticing the physical sensation of hungry or dizzy/faint and instead consciously experience a desire to engage in the outcome/remedy behavior. And then, I’m so god damned busy at work or so committed to my schedule (and my oral hygiene) that I chalk it up to a whim and dismiss it.

And then I feel like shit.

So yeah, this is revelatory for me.  Apparently I need to learn to pay attention…if not to my body (I think this is a lost cause…chronic illness makes  it a good minute to minute strategy to tune OUT the body sensations) then to the little wee voice saying “oooh, you know I really could go for a gatorade and some orange chips right now”, then translate it into a statement of needs which I should attempt to address.  Because boy, if I’m too busy to eat a yogurt, then odds are I’m too busy for the blood sugar nadir that’s going to hit in about 40 minutes.

much needed

…A good laugh!  Mr. Dyspatient and I were looking for something fun to watch last night – ran across Patton Oswalt in the Netflix instant list.  Oh yeah!

new look

Decided I needed a theme update.  It’s too bad that WordPress keeps the editing of the template all locked up unless you upgrade.  Bummer.

So I went with a different repackaged theme, largely to prevent text overrunning in the sidebars.  This theme isn’t too different from the one I had before.  Also, I added an image to the header.  It’s a piece from a recomposed slice of an abdominal CT scan.  I figured all that radiation exposure should be used for something, other than taking up space in my medical record.

abstract image created from top slice of an abdominal CT scan.  Reds and greens, blocks and spheres

Abd CT, 2005 showing not much considering all the pain and weight loss. Maybe they just weren't looking at it the right way

got plans?

I did.  I had plans this weekend to pack for the upcoming move.  My body has other plans.

After finally feeling pretty decent this week, it has now been announced that I am going to get my period – and here are the cramps.

Crap.

Just took one of my precious celebrex.  I should have taken one last night though.  Pain like this is pain you need to get ahead of.

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”.

(not) blue

Back from the neurologist.  1 hour behind – I wish I’d called first because taking time off from work is making things difficult there.  My bad though, shoulda called.

Not much to report.  “All good”, the doctor chirped as he came through the door.  Um.  No, not all good.  All still not good.  It not being hot has helped, a ton.  But warm me up and I’m a mess.

The nurse had told me the EMG of my arms showed “an old injury and a new one” in my neck.  “I don’t remember doing anything to my neck.” “Oh it can happen doing anything, even just turning your head.”  Ok.  I get that.  The doc told me that the MRI was normal but the EEG showed some abnormalities in the left temporal lobe, he even busted out his brain model to show me where.  I sometimes wonder, should I say I completed course work for a PhD in cognitive psychology or just let them prattle on dropping such bon mots as “this is the temporal lobe…of course it doesn’t look this color normally, that’s just the model”.  Really?  It’s not robin’s egg blue?

Back to the lobe, mine, not the models.  Which is not blue.  “It’s non-specific and I am NOT saying you have a seizure disorder.  It sometimes comes with migraines, yours was there on and off, it got worse in the hyperventilation condition”.  Long and short, he recommends a sleep deprivation EEG to look a little further.  “It’s probably just the migraine, but this would help us be sure”.

I doubt it.  It seems like nothing will help be sure of anything.  I’ll probably do it but I did say I’m super busy at work and asked if this can wait a month or so.  He said yes.

I said “ok, so you’re saying that the symptoms I was having were all probably just a two and a half month long migraine?”  He said “yes”.  And I described how I felt during the hyperventilation episode and said that this was exactly the kind of crappy I feel when I feel really crappy (outside of induced hyperventilation during an EEG).  I said “During those times, when I’ve felt like that, I’m not aware of overtly hyperventilating or breathing strangely”.  He said I might not be.  He agreed it didn’t sound like the kind of normal thing you’d get with hyperventilation (tingling in extremities, etc.) but that he had no idea what might have caused it.  I said I’d ask my primary, and he said that my primary care probably wouldn’t know either.

Fantastic!

I conclude with this, I’ve posted it before but it bears reposting, because apparently I just DO that now.