melting and melting down

It’s been warm, well warm-ish.  Some warm days, then some frigidly cold ones.  Always fun for the thermostat wars at work.  “The students say it’s cold in here,” my step-boss says.

    “step-boss” is my term for the person who used to have part of my boss’ job and who now holds some nebulous position which I guess is best summed up as “cronie of boss”.  In this relation, they cover for each other when they are out – which in the case of step-boss is frequently.  She arrives late and leaves early every day she is in, and I’ve not known a week when she’s been in every day yet.  Because of this coverage, when my boss is out, her cronie is my boss.  Hence “step-boss”.

Step boss really has it in for the thermostat in my work area.  She’s snuck in on several occasions to turn it up to 76, 78, or 80.  Our last “discussion” of it came when she walked through my office, told me she turned the heat up earlier because it was cold, and then proceeded to argue with me when I said “yes, and I turned it down a touch because when it’s up that high, it does get too hot in here.”  The truly perplexing thing about this, and as I write this I realize this is in fact the truly perplexing thing about my entire workplace culture, is that so many of these shall we say “sticking points” erupt in arguments which consist entirely of observables – and how those are measured, and the weight given to them.  I.e. “I observe it to be too hot and so we will do this”  “Well I observe it to be too cold and so we will do that.”  Sure, you could say this about most arguments.  But here’s the rub.  For many of the, let’s call them agents, in my workplace, strength of supporting factors in these arguments is seen as being legitimately gained by adding that others think or have observed what you think or have observed.  It is not, and here’s the exceptionally hard to swallow point for me, NOT gained by undertaking methodical observation which includes observing under controlled conditions or observing under perturbation of one condition at a time.   That’s hard to do in the real world, but what helps is observation of conditions and their context (e.g. “8:30 AM Monday – cold.  Heat at 72 degrees”, “2:00 PM Monday – hot.  Heat at 64 degrees”).  So let’s just say that the approach I favor and inherently gravitate to is undertaking careful observation and recording of the observables using multiple objective measurements (e.g. a thermometer) as well as subjective measurements “I’m hot, he’s hot, she’s comfortable, she’s cold”, all sampled multiple times over multiple days.  And that the approach most people in my workplace favor is one time sampling using subjective measures.

While this is at the moment about the temperature in my work area, the whole distinction between approaches to problem recognition and solving is one that permeates the entire work environment – social as well as physical.

So this is how the weeks back at full time started.  “We were cold when we came in this morning so we went ahead and  cranked your heat….enjoy when it gets up to 80 degrees by 10:00 AM and you can’t cool off the room because none of the windows open!”  And my boss just being an all around…um, word that rhymes with “bundt cake” minus the cake.

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tempting

One of the people at work who has explained how she can wish away her illnesses is sick.  “I’ve had this cough for weeks and I’m just so exhausted,” she tells us.  “I slept all weekend, I feel like I can barely get up and do anything.”

How tempting is it to tell her that she needs to try harder to wish her way healthy?  VERY.

But I take the high road.  I don’t say it.  I am sympathetic and I do not pry.  I tell her that’s terrible, and that I hope she feels better soon.  I wish her luck at the doctor.

Because this is me.  As much as a part of me is practically screaming “HAHAHAHA!” inside, another part is saying in moderate but stern tones “Now Dyspatient, making fun of someone who is sick is wrong and bad and you of all people know this so settle down.”  It sucks to have such a vocal and principled super-ego sometimes.  Because sometimes – like after having a bad week or two at work and knowing there are two more coming up, knowing that the person I am feeling this ambivalence about is part of the problem in many ways – I just want to let my inner bitch loose and not be so god damned principled.

the world is very different since the robot uprising

Affirmative!

I got a roomba!  Works great so far – perfect for a neat freak with chronic fatigue.

labs

Oh I got labs.  Here’s what’s on deck for this afternoon:

  • hepatic function panel
  • Basic metabolic panel
  • CBC w/diff
  • ANA w/reflex
  • ESR
  • Magnesium
  • Phosphorous
  • Prolactin
  • Gastrin 478
  • ANA choice cascading reflex
  • Vasoactive intestinal peptide
  • Parathyroid hormon, intact with calcium (serum)
  • CRP
  • Catecholamines, fractionated and total, plasma
  • Catecholamines, fractionated and total, 24 hour urine
  • VMA, 24 hour urine
  • Pheochromocytoma evaluation
  • Dopamine, urine
  • Homovanillic acid, 24 hour urine
  • Metanephrines, fractionated, plasma
  • Chromogranin A

That is a lot of bloodwork, and possibly several jugs to pee into.  Reasons for this (on the req) include:

  • chest discomfort
  • tachycardia
  • hypotension
  • theraputic drug monitoring
  • hypoglycemia
  • abnormal high adrenaline and adrenaline breakdown product levels on screening
  • episodes of flushing
  • diarrhea

With the following notes to laboratory:
“Additional history: Positive antinuclear antibody, abnormally elevated chromogranin A, possible pleurisy”

Jeez, he forgot fatigue, migraines, multiple avitaminosis, mild hypercalcemia, and arthralgia.  ;p

And this is what I mean when I say my PCP is god damned thorough.

scurvy dog

Hey, so here’s some fun news from my primary care doc:  my vitamin C level is “undetectable”.  “What?!”  “Ok, nearly undetectable” he added.  I guess I have cred for the next “talk like a pirate day”.  Husband asked if I plan to wear an eye patch and carry a cutlass.  garrr!

manic monday

My husband was out of town this weekend to visit with his family a few states away.  His brother’s birthday, his sister in law’s birthday, and just general “let’s all get together”-ness.  That’s nice.

I haven’t had the need for that in my own family in over 10 years now.  And the last two families I did do this sort of thing for certainly didn’t love me for it.  What I remember of it is largely pain in the ass running around, feeling like you’re trying to please all the people all the time, etc.  My own family actually was pretty chill on the whole “hey gang” kind of planning.  “Hey gang!” being my term for what I see in these other families – it’s not enough for the visiting family member to plan his or her trip so as to maximize time with all family members (equally).  All family members must engage in activities, and all activities must involve all family members.  This is in fact a strictly enforced code.  My current husband’s family is definitely a “hey gang”.  My ex husband’s family was also although they didn’t think they were, which actually made it that much harder to address.  The guy in between’s family was ok with members going off to do their own thing providing it was approved by the family patriarch as appropriately cool – e.g. preferably involving expensive toys and large amounts of alcohol.  Any other independent planning was seen as wuss-tastic and insufficiently important to leave the family behind, and therefore subject to undermining.

While my husband was gone, I planned to have my sister over to visit.  She’s been having a rough time with work.  This coming week was my first full time week back and my husband and I planned out how to split up errands and chores on the weekend so that I wouldn’t be exhausted heading into it.  My husband suggested that my sister might be able to help with grocery shopping.  Or not.  My husband explained that he didn’t mind going grocery shopping when he got home Sunday.

Friday night two things changed.  My husband’s family called to tell him that plans changed to suit the convenience of the ones doing the hosting.  The practical result was that my husband now had to travel a bit further and would spend more time in transit and less time with the family.  My sister called and told me that she had quit her job on Tuesday, with no notice.  Just quit.  And that maybe now she’ll be homeless but at least she’ll be homeless with a clean conscience.

Bright and early Saturday morning, my husband got on the road.  My sister didn’t call until 4:45 PM and didn’t actually make it here until about 6 (she lives about 20 miles away).  So no grocery shopping.  I spent the next nearly 24 hours playing career and life counselor to her.  My husband came home in a distant mood.  I was exhausted and had just lay down on the couch.  He went shopping and asked if I would rest while he was out so I could help prepare food for the week when he got home with the groceries.  Which I did.  We cooked and I cleaned and were done with it all by 8:00.  I was happy because I thought I’d get into bed early and get a good night’s sleep to start off my big first week back at full time.

Nope.  My husband had other plans.  Other amorous plans.  This did not end well.  Had his plans been stated explicitly, I might have been able to discuss it without getting pissed off.  However, they were not.  There were four reasons his plans were a bad idea, all of which I’d have expected him to know.  First, non-explicit.  As a sexual abuse survivor, I require actual communication of intent and consent.  Even with my husband.  None of this just tumbling into sex shit for me.  I need to know the person’s intentions and I need to be given a no strings attached chance to agree or not.  Second, I was fucking exhausted.  Third, it was Sunday night and my first week at full time since before Christmas.  The Sunday night sex plans are not a terribly great idea in general – hell, there was even a crappy pop song addressing that in the 80s.  Fourth, he was distant emotionally earlier and we hadn’t really reset.  I need that reset time.  See number one for reason.

And now I’m upset.  And tired.  Happy Monday.

rekindling the spark

People with a chronic, as yet undiagnosed illness know this situation all too well.

  1. You go to a doctor, the doctor takes an interest in your troubling condition.  The doctor may even offer some theories/hypotheses about what is going on.
  2. The doctor orders some tests.
  3. You have a follow up appointment.  The tests are inconclusive or negative.
  4. The doctor, at this point, may refer you to a specialist (repeat steps 1 through 3) OR doctor skips straight to step 8.
  5. Without answers or treatment plans, you continue to feel shitty OR 5b. you try a treatment and it works but then stops working OR 5c. you try a treatment and it makes everything worse OR 5d. you try a treatment and it makes no discernible difference.
  6. You make an appointment to see doctor.
  7. Repeat steps 1 through 5 OR
  8. Doctor shakes head and shrugs shoulders/can’t remember your name and complaints/dismisses and invalidates your symptoms because no answers can be found/verbally abuses you.

Yes, you’ve hit the end of the story.  It often seems at this point that all that is left for you is to cycle through the above steps with only minor procedural variations.  And I say it seems this way based on my own experiences and based on the experiences of others.  But because I am a hopeless idealist, I keep thinking….

There has to be another way.

There has to be a way to reignite the interest that was shown in step one.  If for nothing else, then at least for plan to treat your symptoms and help you find ways to lessen their impact on your life and livelihood.  E.g. offering to work with you to request accommodations at work so you don’t lose your job trying to accommodate yourself without official documentation to back you up or failing to do your job because key components of it are not doable without accommodations.

To put it like this seems to imply that there should be some magic words, some single possibly simple way of redirecting your doctor’s attention at least to the issue of your health and wellbeing in the context of continuing, very real, life altering symptoms….if not to continuing the quest of finding an answer.  But so far, I just can’t think of what that is.  Which makes me think that I am deluded.  Which in turn pisses me off.  Because I don’t think it is impossible in a healthcare context which emphasizes patient wellbeing, which values and allows for (if not promotes) careful review of cases, results, and notes rather than reducing consultations and care into the medical equivalent of speed dating.

While I personally think I have a primary care who would be willing to try, I honestly don’t even know how to ask for it.  I had been thinking of making an appointment to try my hand at refocusing my PCP, but I was lacking even the start of a script…e.g., what to say when the secretary asks what the appointment is for.  I put it off.  And off some more.  And then in the last two weeks, I started having some troublesome crap.  Racing heart rate that made my head pound – literally, my teeth would clatter if I didn’t clench my jaw, and my (one) ear ring in a throbbing buzzing tone, chest pain, and shortness of breath.  I tried just taking care of it on my own.  Resting and sitting or laying down when it got bad, drinking more water since I thought maybe I was just dehydrated.  But it persists.  I lie in bed at night and feel like my heart is racing and straining against a too tight hug, like something high and deep in the middle of my chest is pressing down and in and choking off the normally free and relatively imperceptible motions that make up the mechanics of my chest’s innards – and I’m not freaking out or panicking while this is happening (otherwise I’d say it’s an anxiety attack).  Rather, I’m bothered, annoyed, and frustrated by the pain and discomfort.  And concerned.  So I called.  “Well if you’re having chest pain you need to go to the E.R.”  “Oh I’m not having it right now,” I lied – because I don’t have five hours worth of time or patience to sit around on a monitor that doesn’t work while the staff work me up as if I were either a 65 year old obese man or an anxiety prone 40 year old type A woman (my experience is that these are the two common schemas for dealing with presentation of chest pain and s.o.b. in the ER…were I younger and possibly not white, then it would likely open up the possibility of a third stereotype…uh I mean protocol, which is “possible drug user”).  I’d get a CBC, vital signs while laying down in a bed, and at best a well intentioned lecture about anxiety and stress.  Possibly also smoking.  So I lied.  And I have a sick appointment for Monday.  And I will try like hell to respect the constraints of the medical visit, i.e. not to try to direct him to all the old, long standing shit and to just focus on what’s up now because I respect his time and I don’t want to turn what will inevitably be scheduled as a relatively short, contained visit into an attempt to revisit EVERY damned trick my body does in it’s chronically treacherous state.  I’ll leave that for another time, a time when I have more energy or more motivation to go a’trailblazing into the unexplored territory of the “let’s revisit this shit and try to come up with even a set of practical steps if not a comprehensive plan” appointment.

Ok, so Monday…step one…

damned if you do

I just got reprimanded by my boss for going 1.5 hours over my hours last week.  Mind you, about 40% of the time clocked for me last week was time I didn’t actually work but which was credited to me when we closed for bad weather.  And the per day (that I actually worked) extra hours were there because (a) the weather sucked most of the other days of the week, and the walkways are covered with snow and ice, so I left extra early to leave myself time for delays; (b) I had to catch up on all the work that wasn’t being covered while I was out; and (c) I had to catch up for work that was missed during the weather closing days last week.

The big pressing reason for the alarms on my “going over” last week are because we were given a temp since I’m on reduced hours and that temp’s pay is coming out of the budget for my position.  However, the temp is not covering my job in the least and is sitting at her desk bored to death in the afternoon (I know because she told me this).  And the person who is covering a bit of my job while I am not there is literally covering a tiny bit of my job.  I.e., she sits at my desk doing other work more valued by my employer and only does that when there is a need for a body to be at my desk, which is rare – the rest of the time she is off in another office doing that afore mentioned more valuable work only.  Which leaves the rest of my full time job uncovered and leaves me to try to manage it all in my reduced hours.

So.  I’m vacillating on whether to talk to HR about this.  I think it’s ridiculous that we have a temp because I am working part time but the temp is not actually helping to get even half of my job done.  If I didn’t know my boss’s approach to accommodations/modifications in the workplace already, maybe this wouldn’t strike me as such a problem.  Her established attitude is that they are an inconvenience, which she passes on to the employee in the form of failing to fully accommodate in the hopes that the employee will feel hassled and then give up and relinquish claim to them.

Drink! Drink! Drink!

I need an internal chorus of this to remind me to drink more, well to drink more than coffee.  I do drink water, but not as much as I should.  Coffee, I never forget to refill my cup (keeping it below 3 cups a day).  And it seems that lately I’ve been more dehydrated than usual.  How do I know I usually am?  Because of the orthostatic vital signs frequently taken at my doctor’s office.  Nearly every time, it’s said either to me or to the doctor in the hall as the assistant/nurse leaves the room “well, she’s dehydrated…”  How do I know I am more so than usual right now?  Because every time I stand up, I get that brain sucking, vision graying, wobbly kneed, pounding pulse feeling…and when I’m up and moving around (e.g. getting showered and dressed for work in the AM), my heart is slamming hard and fast.

It’s not like I deprive myself of fluids.  But apparently I don’t drink enough.  Today I resolve to drink more water.

So am I orthostatic today?  Looks like it.  I know there is some debate on the proper way to to check this stuff, but I’m going with how my doc’s office does it.  Laying down, my BP was 104/64, hr is 73.  Standing (as passively as possible) for 10 minutes, BP dropped to 87/58, hr went up to 108.  Is this from being dehydrated?  That’s what today is meant to address.  If I drink more and still feel this shit, then no, it’s probably not.

Flu season

If you haven’t watched the Flu Season episode of Parks and Recreation, go watch it now – ungodly funny.  I think I may show it to the students at work as part of an educational lecture series on not coming to work sick.