It’s a small world

My nature includes a strong sense of self composure and discipline.  Oh that’s not to say I don’t act like an idiot, I surely do.  But here’s an example of what I mean, as it relates to someone else’s sickness.

In 2003, my then live in boyfriend, T, got very ill.  He had type 1 diabetes and so any serious illness was always extra troubling, even more minor ones could mess with his blood sugar in bad ways.   This particular time, T woke up in the middle of the night with intense abdominal pain.  He proceeded to power puke a few times and just had that “oh boy are you sick” aspect.  So I took him to the hospital.  Lots of screwing around in the ER.  The only thing of note (aside from his sugar being high, oh yeah and the horrible pain that he still was in despite the morphine) was that his lipase was 10 times the high end of the normal range.  After much debating, the ER doc admitted him.  He was in the hospital for a week while they ran various tests and waited for the pain to subside and the lipase level to come down.  Our apartment was a half hour drive away, and it was winter.  We were both in grad school and I remember that despite having a large group of friends, and despite T’s family being local, I was having a hard time finding someone to go to our apartment and feed my cat while I was at the hospital with T.  T’s mother and grandmother were at the hospital as much as I was.  I would come in the morning before class or having to feed the cat because if you aren’t there in the morning, you miss rounds and you have to rely on your drugged up loved one or his useless family to tell you the details of that day’s medical events/doctor thoughts, leave, then come back and have dinner with T and go over whatever results were to be had, then go home.  Leaving him was hard.  Not being there when the doctors randomly showed up to report on some test was hard (T’s family were useless with medical information.  it slid off their brains like water off a duck’s ass), going home and going to bed instead of staying up all night on the internet looking up tests and doing what I call “functional fretting” was hard.  But I did leave, I did go home and take care of our lives so it wasn’t a mess when T got out of the hospital, I did feed myself and sleep so that I wouldn’t also get sick (I had fatigue, hypoglycemia, and joint pain but overall, my health wasn’t as bad then – the GI stuff didn’t kick in until mid 2004, the spontaneously and chronically subluxing hip not until 2005, the overheating/flushing not until 2008).  Let me repeat:  it took an immense and very pointed effort to redirect some of my energy to taking care of myself so I could take care of him but I did, because that, as they say, is how I roll.

So here we we are in 2012.  Taking care of myself is a full time job.  When I say I have a strong sense of self discipline, what I mean to say is that I have all the normal desires to do and go and live outside a small, narrowly defined world but I also have plenty of experience at giving in to those desires only to find that I have to give up doing something else, like say, working.  Just like with T, I end up in a sort of divided mental state.  I am patient and nurse for myself.  Nurse is the best word I can think of since it combines aspects of social worker, occupational therapist, and parent.  I have to tell myself “hey dyspatient, I know the house is a mess and you really want to do nothing more than spend the next three hours immersed in a two-story cleaning fit, but….you did that a few weeks ago on a short work week no less and you were exhausted and in pain going into the work week.  Every day of the week, you had an episode of near syncope at work.  Remember how much that sucked?  yeah.  All because on the weekend, you overdid it.  You got so wrapped up in cleaning that you put off eating until you were done with just this one more thing, but one more thing lead to one MORE thing after, and the next thing you knew, your blood sugar was 61 and you had drank nothing but coffee until after noon.  Consequently you were staggering around like a drunken fool which meant you over reached and positioned yourself badly while you were sweeping, scrubbing, and vacuuming and ended up pulling several joints out of whack so badly that you had to use a cane the next week….so how about we NOT clean today?”

The patient in me says “but surely I can clean a little…”  And the occupational therapist says “no, other people can clean a little.  You, apparently, cannot.  And until you find a way to clean just a little, you are forbidden to clean on the weekend before a busy week that you need all of your limited resources for.”

You know what else the patient would like to do?  Go out to brunch with an old friend.  But if I do that, I may exhaust my day’s energy.  It feels like a low energy day, and I need to conserve some to help make food for the week.  So no brunch for me.  It’s laundry, rest, eat, rest, cook, rest, cook some more, rest, fold clothes, rest, eat, rest, bed.  That’s my agenda.  It makes for a small world.  Couch, bed, bathroom, and kitchen.  Husband and cat, and no spontaneous brunch with a friend who may not last much longer since I never seem to be able to go out.

This is not a pity party.  And I’m not feeling like it’s all on me.  I’d actually be much happier if my friends could configure their expectations around my abilities and not get their noses bent out of shape if I can’t go out.  We can still talk.  My many rest periods allow for a phone call.  This is just me thinking about these choices I have to make.  I do feel that I have a choice, and sometime I choose to overextend.  Not today though.

Eye, yi, yi, yi…

Something is stuck in my eye!
I picked up a t-shirt, flicked it like a big jerk
and something quite gritty flew off it.

(to be sung on way to urgent care)

So I’ll be talking to that new primary care a bit before I anticipated.  Because I have awesomely ambiguous insurance:  I am covered for an ER visit in the case of an emergency but “crap stuck in eye despite flushing with half a bottle of natural tears and prodding with wet q-tip is (oddly) not listed under the “e.g.” for emergency conditions.

I get it.  It’s not like a heart attack.  And I feel dumb for having done it and for need to go to urgent care, and for calling this guy (on call no less) to say “hi, you haven’t met me yet but you’ll be getting to know me SOoooooo well…”  I get it.  But it is my eye.  Last time I flicked some mystery bit into an eye (nearly 20 years ago), I ignored it even after the oozing started – ended up in the ER anyhow.  So now that I’m older and wiser, apparently I can’t be trusted to do normal routine tasks without hurting myself but I am responsible enough to not wait for the ooze.

Oh yes, and also I get two new categories on my blog.  “Eye” and “doing something stupid”.

Update 6/2/10:  Ok I decided not to go to the ER.  For three reasons.  (1)  I couldn’t get a call back from the primary to be (not super happy about that – he could have at least called, no?)  (2) I really didn’t want to go and found all kinds of reasons like “my local ED probably doesn’t have the equipment to even look at my eye let alone get this thing out of it”.  (3) After rinsing my eye about 2 dozen times, I finally moved the bit away from my iris.  My eye still stings and I woke up to cloudy vision but it passed (cloudiness, not stinging) so the hell with it.


It’s July. This means it’s national “how the fuck do I order that?!” month.

As a unit clerk, I dreaded July. Sure, it meant some new fresh folks to replace the ones who had been worn down and frayed by February. But it also meant too many over-eager interns and inflated residents strutting their stuff through our halls, sitting at my computer, walking off with my pen, running away with charts, and sleeping through pages. Overall, I saw July as one big pain in the ass. However, I hadn’t really thought about what it meant for the patients until 1997.

Back in 1997, my brother was admitted to a big city hospital, one of those mammoth teaching/research jobs, the first week of July. Depending on your perspective, he presented either a mess or a mystery. That is, there were several paths you could have gone down to try to come up with one explanation for all the symptoms.
Here’s the most obvious stuff. He was a recently HIV positive 25 year old male who came to the emergency department with renal angle tenderness, vomiting, diarrhea, fever. Oh and he was quite overtly jaundiced too. I don’t know the meds or the lab values – this was years ago now and if I knew this information I’ve long forgotten it. Long story short – here’s the important info which a good history would have elucidated. My brother had spent the weekend before this illness started at a Pride celebration which apparently entailed the mandatory drinking of many Rolling Rocks in the sun for the better part of two days. He had tried to keep up a good (non-alcoholic) fluid intake since one of his HIV meds came with stern warnings about fluids and what could happen to his kidneys if he didn’t get enough with the med. However, the intentions for decent hydration were shot when he ate some bad yogurt which resulted in vomiting and diarrhea and fever. Oh and he has Gilbert’s syndrome.

Needless to say, my brother’s hospital stay was a fucking disaster. He was bounced from one service to the next in the attempt to come up with a single diagnosis which would account for each symptom, sign, and lab value. His primary care doc (ID) was on vacation, a fellow was covering in the office. No one knew who was authorized to talk to whom. The various services couldn’t keep my brother’s coverage straight, and the nursing staff didn’t know which doctor was on what service and what service was on call when. Labs which were ordered didn’t get drawn because they weren’t ordered right the first time (and sometimes second), peaks and troughs were inverted or totally missed. Unnecessary imaging was performed, biopsies were ordered and then canceled at the last minute. Follow up on any error was somewhat expectedly poor given the many, massive cracks for something as apparently minor as bloodwork or a CT scan on a stable inpatient to slip through. Like I said, fucking disaster. But we stuck it out. We did so by constantly leaning on the primary’s office, keeping our own notes about what had been ordered when, and getting to know the interns and residents really well. Yes, we were the pain in the ass family, but keep in mind, my brother’s HIV status was still new and his doctors had been going down the path of kidney infection so we were scared. Eventually, the multiple, cascading causes of my brother’s presentation were elucidated and addressed (more or less) and after only three false starts (“hey, he’s going home today as soon as they do rounds and write the order!”), he was finally discharged.

I’d like to think that hospital and residency administrators had identified the little mini-catastrophe that a service-wide medical staff change like this causes every year, that they’d learned some tricks like staggering schedules so that radiology, anesthesia, internal medicine, surgery, emergency medicine, and infectious disease didn’t all completely change staff at the same exact time, but I’m guessing this is more of my boundless optimism. I’m guessing that because my aunt just checked herself out AMA from another (different) big city hospital last night after being juggled, bounced, and rescheduled around for days. She was admitted Friday night for a Monday AM bronchoscopy (looooong history of heavy smoking – PET scan showed a mass). The scope was postponed all day Monday due to a back up. Then Monday night, the team changed its mind and decided on a needle biopsy (placement of the mass), but it was impossible to schedule with radiology through Tuesday. Tuesday evening, a nurse told my aunt “yeah, this kind of thing happens all the time”. I understand why she said it, and I expect her intentions were entirely good and even sweet. Unfortunately, my aunt had been cooling her heels inpatient for too many days so she could undergo a procedure to confirm that she has lung cancer – at least this was what was going on in her mind no doubt. And while she waited, patiently or not, she was witnessing the hospital screwery that is July. I think the conversation with the nurse was the last straw and also an excuse to run away. Within an hour she had signed herself out AMA and now plans (or says she plans) to have her primary care doctor set up the biopsy outpatient through Local City Hospital, which has earned the nickname of “Local Shitty Hospital”. But who knows, maybe Local Shitty (not a teaching hospital) isn’t so bad comparatively speaking, at least in July.