“Can you order a special meal, like they do on the airlines?  when you fly?” This is what the HR rep asked me at a meeting this week when we were discussing difficulties I am having with the departmental dinner that I was ordered to attend.  Handily, I had printed out a two page listing of foods one can eat on the various stages of a gastroparesis diet, and it was sitting on my desk someplace.  “Oh, well, it’s really restrictive…my diet.  Hang on, I have it…”  And wow, you’d have thought I had just started unbuttoning my pants to moon her or something.  She literally reared back in her seat and exclaimed “No, oh no you don’t need to show me…”

Now, let’s take a moment here to go through all of the ways that this sucked.

  • Primarily, if I don’t NEED to show her, how about she trust me when I say that eating out is not gonna work for me without a shitload of hassle that is going to sap my resources for the next day?  How about letting me make that call?
  • I understand that HR is sensitive to “forced disclosure” but this was not forced.  Well, except by her presumption that I can’t make a reliable judgement about what I can and can’t do given the intrinsic resources I possess and the external resources that my employer makes available to me (i.e. hard to plan whether you need to haul a heavy bag of food around Ye Olde Historic City when the people planning the event can’t tell you even what time it starts let alone what’s on the menu).  This was, given the conversation, me CHOOSING to try to educate her.  And her acting like I just did something shameful.  Nice.
  • The assumption that I fly, that I go out to restaurants on my own time.  And not just assuming, but hanging on to this assumption despite my telling her that I am very very limited in my capacities to get out and do things.  Did she just think that I was conveniently unable to do “social” stuff or travel for work?

Really, the first one was the kicker.  It underlies all the other problems I had with that, delineable and not.  I have my own personal struggle with whether to educate or not, most often at work but sometimes with the few friends I have left and family.  Needing to explain to my brother recently that no, I can’t go out to brunch with him because it would be an exercise in frustration and martyrdom for me to sit at a table while everyone else ate yummy food and I nibbled on a piece of dry toast.  He knows what’s up.  And still.  I struggle with whether or not to do it because I am, by my nature, an advocate and an educator.  I explain things.  Sometimes too much.  Woe be to the workstudy student who asks me what a word means.  I’m old enough now to not (usually) launch into a lecture on etymology and usage and to ask “How detailed an answer do you want?” before I go there.  I am the same way with the health stuff.  I have given quite a few impromptu lectures now on autonomic function (which I barely understand – but which my understanding of significantly surpasses what is possessed by most people without dysautonomia).  And yet, despite educating and offering this information, I see little change in the people I offer them to.  This is where the struggle comes in, and this is where I am likely to get pissed off.  I dislike disclosing to people there is no need to, and I dislike when I disclose and discuss with people and they fail to incorporate the knowledge into action.  E.g. “super fun lunch time” invite I got from my boss recently.  I KNOW I have discussed my functional limitations with her as they pertain to work activities.  Can’t stand up for long without getting faint; walking is fatiguing and sometimes very painful; can’t tolerate hot environments without risking passing out; can’t eat much and since I don’t know how food I didn’t make was prepared, really shouldn’t eat it unless I want to find out the hard way that it had too much fat or fiber or some other gut slowing ingredient; can’t delay eating or my blood sugar drops.  And yet, here’s the invite for our office to go (walk 3/4 mile) a tourist packed, overheated food court.  “Super Fun” indeed.  It is everything I can’t do.  Walking crowded city streets with ice and snow and a sizeable number of stairs on the shortest path; wandering around inside the food court, dodging clueless hunger crazed tourists; food I can’t eat; nowhere to sit; nowhere to put my coat and bag (and I would have a bag, for my water, my meds, and my food that I can eat).

So here’s someone I’ve educated and who has done nothing with that information.  Nothing useful at least.  And it puts me in an awkward position of having to say “no” to my boss, who is not good with being said “no” to.  And that is why I do struggle with the disclosures.  But that is my struggle.  I don’t need to add to that with attitude like the HR rep’s.

no, thank you

I am not good at saying no.  I like to think I am, but truthfully, I am not.  I have discovered this as I have gotten sicker.  I suppose I should have noticed it way back when my blood sugar and endometriosis were my biggest problems.  Specifically, the blood sugar.  I have passed out more times than I’d like in public due to not saying “No, I don’t want to keep walking around looking for a place where EVERYONE wants to eat.  I need to eat now, you all can stand out here and debate it but I’m ducking into this convenience store and buying a snack….”  There were a few times in my mid twenties when I tried this, always inelegantly.  And that is another example of being bad at saying “no”, doing it but doing it badly.

That’s, unfortunately, still where I’m at.  My health problems mean I have to say “no” alot.  These days, I often preemptively decline by avoiding situations which I suspect would lead to a whole bucket full of poorly executed “no”s or worse, going alongs and ending up with hell to pay health-wise.  This gives me the reputation as someone who does not WANT to, rather than someone who cannot.  I’m not sure there’d be a hell of a lot more understanding for me if it was the latter, but I can tell you there is zero for the former.

E.g., my boss sent out an email yesterday letting the office know about a food discount event going on at a local touristy landmark.  Local as in normal healthy people could walk there, wander around, and walk back without it destroying their day or week.  Not local enough for me.  And not something I think I can do.  Walking there and back is one thing, but add in the wandering around a food court full of stuff I  can’t eat anyhow during my lunch break, and if I choose to bring my own food so I don’t bottom out bloodsugar-wise, I will reduce my stamina but a significant amount due to having to lug the extra weight around while I walk and wander.  So this is something that seems like a clear “hell no” but I am reluctant to reply and say that.  I guess I’d like to better understand her point in inviting me.  I’ve discussed these limits with her, it’s come up in the context of work related social events that my boss’ boss’ boss holds periodically throughout the semester.  Does my boss think that my reluctance to attend those big boss events is based in something other than physical limitations, and does she therefore think that I’m like some faker debutante waiting for just the right invite to get off my ass and flounce off gleefully and spiritedly?  Or is she just being polite in inviting her big fat crippled worker along to this particular event?  Knowing which would help me figure out how to say “no”, with some grace and dignity.

Old school

Got a holter monitor on today, on account of the screwy stuff my heart is doing.  Maybe just POTS gone wild, but I need to make sure I’m not ignoring a potentially bad rhythm.  So 24 hour monitor it is.

While the monitor which records the signals from the leads has seen significant improvements since the last time I had any sort of prolonged monitoring device, the human data recording side has NOT.  I.e. there is still a crappy photocopied piece of paper that they hand out and tell you to record your activities, medications, and symptoms on.  Why is this not electronic?  Why is there not a “holter app” produced and distributed by the company that makes the monitor, that pairs with it via blue tooth and where you can record this stuff instead of scrambling for a sheet of paper and pen while short of breath and trying to remember to also push the button on the monitor?  Hell, I’d even take just an electronic log that DOESN’T pair with the monitor but at least gives you the freedom to program and then select symptoms with just a few taps.  It could be set up to do languages other than English on the patient side, to read items out loud or enlarge the font for patients with vision problems.  It could even prompt you to enter in activity if you haven’t tapped in a while, so the docs who are going to have to read and interpret your monitor’s data will have a better sense of whether you are at rest or not.

We have this technology.  For the love of god, why isn’t it in use?

I suppose one answer is that most cardiac patients are elderly and will be like “you want me to do what now?”  But most elderly cardiac patients also are not going to be able to easily read this tiny, degraded print on the paper log they hand out, or have arthritis and are gonna have a hard time writing legibly in those tiny little rectangles they give you to record your symptoms and activities.  How about for people without a mobile device, they give out a tablet where patients can tap in their symptoms?  It would be SO EASY.

I think another and more on target answer is that the human factor side of medicine is not always given the attention it deserves – not in a real, practical sense.  It’s so very reductionist and so very medical to ignore the patient side of things, to just say “now you need to make sure you do this difficult and pain in the ass thing over and over so that this test/treatment/whatever will work right…” and then just leave it at that.  We know that if you want better results, you need patient compliance with so many things because technology is only going to get you so far and very few tests and treatments are 100% patient-proof.  So acknowledge this, and incorporate it into the new designs. Sure, a smaller, more compact monitoring unit is going to help.  But how much better if in the next generation of at home monitoring devices (blood sugar monitors, BP, cardiac, EEG, the various gastric things they can now send you out with) used this spiffy new technology to make it easier for the patient to record their side of things?

way up north

I have something like a flu right now.  I say something like and not just “the flu” because while it feels very much like the flu (sore throat, fever, aches, headache, a bit of nausea) it feels like the flu at about 20%.  Now keep in mind, I have a quite recent memory of a very bad flu that left me completely unable to get out of bed for a solid week.  When I say this is 20% as bad as that, know that 20% is still plenty awful.  It started Tuesday morning.  This is the week before classes start.  And this week, my supervisor and coworker had decided that we’d all go on a field trip way up north to the Great New England Wilderness to give a day long mini-conference.  I cannot miss this conference.  Had I been involved at all in the planning, I would have pointed out that flu season and three days before classes start is perhaps not an ideal time for such an endeavor.  I was not involved in the planning.

So I’ve known about it for a while.  I made my plans and tried to take some solace in the fact that next week, I’d have two work at home days.  These work at home days were so crucial, more so since next week Mr. Patient is going out of town Wednesday through Saturday for a conference.  I had planned on taking those days as my work at home days and then one as a vacation so I wouldn’t be stuck getting in and out of Ye Olde Historic Northeastern City on my own.  The energy, time, and expense that this costs me is significant, it’s enough to derail me for weeks.

And then my boss dropped a bomb.  She’s going on vacation next week so my work at home days are suspended.  “Yeah, I’m gonna need you to go ahead and come in every day that week…” I found out right before Christmas break.


To recap:  By going way up north today, I’m being asked to do an exceptionally physically difficult thing today on even less reserve than normal (i.e. flu-like illness that’s gone on for 4 days now with no sign of relenting), then to do an exceptionally physically difficult thing all week next week.  This is a recipe for hospitalization in my book.  I am left wondering if my boss really just does not get it or if she gets it but waives it when it’s inconvenient for her.


Browsing the news this AM I ran across this story about Justina Pelletier, a girl with a “medical mystery” being taken into state custody by Boston Children’s Hospital and forced on to a locked psych unit rather than given the medical attention she was referred for.  As someone with a complex medical history and more than one “controversial” diagnosis, I am shaken.

The themes are so familiar to me:  how providers handle disagreements over “controversial” diagnoses; the chicken and the egg etiological conundrum posed by the apparent stress and emotional strain that is seen in people (and families of people) with these physical symptoms – i.e. “is the emotion causing the physical symptoms or the physical symptoms causing the emotion?”; the dehumanizing effects of encounters with medical professionals who seem to operate with a personal deficiency of empathy and/or who have no professional training or model for how to muster and apply it in a medical conflict scenario.

Despite having some appreciation for how the medical staff might have come to wonder if their patient had been “over treated” and mis- or over- diagnosed, could not help but think that they moved from suspicion to conclusion with what in medical timelines is lightning speed.  Need to see a specialist because your systemic symptoms might be caused by a form of cancer or a rare autoimmune disease?  That’ll be 6 months.  Need to invalidate a patient’s symptoms and void another doctor’s diagnosis because it doesn’t fit what you know?  Takes days at most.  What facilitates that transition, and in fact I think what engenders it in the form of feeding negative judgement, is the bad blood that arises when there is a clash between the way that medicine is taught and the way that complex medical ailments work.  It is taught as a science, and in our western tradition this means adherence to the tenets of simple linear cause and effect models only, an emphasis on what can be boiled down into a textbook, a system-wide lack of admission of the limits of knowledge, and a deeply held and unexamined belief that all medical encounters must be dichotomously defined as active agent provider and passive object patient.  When aspects of real world practice shake those tenets,  all hell breaks loose.  It is a nightmare.

Excerpted from “A medical collision with a child in the middle:  Justina has a metabolic disease. Or does she? Her parents and Children’s Hospital deadlocked, she was placed in state custody.” By Neil Swidey and Patricia Wen, Globe Staff, December 15, 2013

….These cases are rare, but not as rare as one might think. In just the last 18 months, Children’s — which given its reputation attracts many of the toughest cases from across the Northeast — has been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure. Similar custody fights have occurred on occasion at other pediatric hospitals around the country.

It happens often enough that the pediatrician who until recently ran the child protection teams at both Children’s and Massachusetts General Hospital said she and others in her field have a name for this aggressive legal-medical maneuver. They call it a “parent-ectomy.”

Typically in these cases, the child had been diagnosed elsewhere with one of several relatively new disorders that are complex, poorly understood, and controversial.

The child’s medical record usually contained references to the parents being highly stressed and difficult to handle. And when the parents in most of these cases rejected the suggestion by doctors that the child’s problems were more psychiatric than physical, that sparked the medical team’s concern, paving the way for the call to the state child-protection agency.

Read the full story, part one of two.

And here’s the irony.  As a child, I was seen at hospitals and even by providers mentioned in this article for GI complaints and fainting.  As a child, I was living in a very abusive home.  Did the hospital staff or my doctor pick up on any of that at all?  Nope.  I was told by my GI doctor to “try to reduce stress” in my life…as a child.  At no point did DCF/DSS get a call to look into whether the stress in my life was perhaps due to something very wrong and very out of my control.  Apparently, since my mother didn’t push the doctors too hard to come up with a unifying diagnosis for my problems or pester them when their treatments failed to control my symptoms, she didn’t trigger any alarm bells.  To me, this is the perfect accompanying piece of evidence that what can trigger conclusions of child endangerment/abuse is not genuine, informed concern as much as a desire to punish pushy people who disagree with doctors.

lock out

I recently posted about the accessible door to my building being locked for an event.  I have since found that the security guards in my building had started locking the door routinely in the evening.  That is, the building is still open, services in the building are still accessible for anyone who doesn’t need that door, they are just not accessible for anyone else because the guards locked them out.

Why?  I asked.  Of course I did.  The guard told me “They told us to start locking it to save energy, but now that I know you need it I won’t lock it until I see you leave.”

Um…..no.  So I wrote to the building manager, who initially thought I was saying the accessible door was locked when the building was locked (?!) but said he would look into it once I explained that I meant only the accessible door was locked during operation hours.  A few days later, I checked back in. I was told that the building had no such policy but that one of the guards had proposed that they start doing locking the only accessible entrance to the building after the guards noticed that “too many non-disabled people were using that door….” and they wanted to save energy.

Savor that for a moment.  Let it sink in.

This isn’t the first time I’ve seen accessible come up against “environmental”.  In the summer, the powers that be at this same building decided they would set the air conditioning system to less cool “to save energy” and would shut it off at 5:00 because “no one is in the building then in the summer”.  This was sent out just after an email about employee summer hours, where you can opt to work late 4 days a week then have the 5th day off.  So much for no one in the building after 5:00.  The air conditioning email was peppered with environmental rhetoric, but it was clear that this was about money.

I’ve encountered it more casually too, a fellow grad student once chastised me for taking “the lazy box” (elevator) instead of the stairs on a day when I was in so much pain and so dizzy that I had barely made it in to school.  I guess that one wasn’t so much about environmentalism, but about fitness. Both appeals (to environment, to fitness) involve people assuming some higher ground to justify the ignorant and marginalizing behavior.  Both involve people making groundless and hurtful assumptions about other people’s abilities and motivations.  They are similar in that they are both justifications for discriminating against people with mobility impairments.  And while people have the right to hold their ignorant views, they don’t have the right to impose them on everyone.  They don’t have the right to lock the fucking door.


My employer recently held an employee recognition event.  Notice that it’s not “appreciation”.  That isn’t directly relevant to this story, but I thought I’d mention it because it struck me as darkly humorous initially and a little more so after the event itself.  “Come on down to employee recognition!  See people you barely know get recognized for having worked here for a damned long time” went the gist of the many emails I got about it.  It was in my building, so  I thought it might be something I could go to and sit awkwardly at (see “awkward pumpkin painting”) and put in my face time at events.  Because it’s been required of me that I go to events.  It was put in writing even, back last spring.  It’s never been rescinded in writing, so although I find it burdensome (if not downright impossible) to go to most things and although I don’t know of another employee who has a written requirement to attend ALL events and functions, I’m honestly just not ready to sue.  So I try to go, when I can.  I assume if I don’t, I’ll get passed by for a raise again, seen as a poor team player, you know, all that.

But yesterday was busy.  We’re down a staff member in my office and while we do have a temp, we’ve still divided up some of the permanent position’s work among the permanent staff.  So I have other responsibilities and we’re heading into a bit of a busy time for me.  And we’re now interviewing (finally!) for the open job, and the interview schedule is messing up my schedule a bit.  I usually work from home Tuesdays and Thursdays but this past week and next I’m in all over the place.  So yesterday, despite the emails we had all gotten inviting us to recognize other employee’s recognition, I ended up working straight into the afternoon without giving this event another thought.  Until I went out for a break, at a time that I later realized was about an hour before the event started.  On my way back into the building, noticed they’d locked the accessible entrance.  “That’s odd,” I thought.  But then they had locked it the night before too.  The night before, it was late and I figured they just screwed up and locked the wrong door.  See, the front of my building has two doors.  A revolving door (not accessible) and an accessible, normal door.  The back of my building has a door too.  A non-accessible door due to it being up a flight of stairs from street level and having no button press-opener.  To get to the non-accessible back door, you take the elevator to the building’s second floor.  To get to the accessible front door, you go to the first floor.  Got it?  Ok, back to last night.

After encountering the locked accessible door again last night, and having to wait until no one was coming through the revolving door to use it (I don’t move fast enough for some people and have been clipped in these doors before, so I’ve stopped using them)…I thought “When I’m leaving tonight, I’ll go out on the first floor and ask the security guard if this locking the accessible door is a new thing.  If it is, I’ll drop a line to the building manager to let them know that’s not ok.  They’re pretty good about fixing things like this.”  Then I went back to my office and worked.

It turned out I worked well through the event without realizing it.  On my way out of the building, as the elevator neared the lower floors, I heard a lot of noise coming through the doors.  They opened on the second floor, which deposits you on a balcony/mezzanine level that looks out over the lobby and the accessible entrance, and I saw a big fancy looking event going on, people filling the lobby, little cocktail tables, music.  Ah, right.  The employee event.  “Ok,” I thought, “not going out that way then.  And I guess I know why that door was locked tonight.”  Making a note to follow up on the whole locked door thing,  I made my way out to the back, inaccessible door.  Still, I believed I had a choice in this.  I didn’t need the accessible door yesterday, so I chose to go out the back.  I was wrong, it turned out.  Because it turned out that even if I had needed it, I couldn’t have used the accessible entrance to my building to get out last night.

The security guard who was stationed at the back entrance was the regular.  He’s chatty.  We’ve chatted while I’m waiting for Mr. Patient to pick me up on cold nights when I don’t want to wait outside, or on nights when I’m feeling to bad to stand and wait.  The security guard was very animated last night.  He told me that they had shut down the front entrance of the building “without telling anyone!  They’re just sending people back here” he said, incredulous, “and those people are pissed!” he added.  He told me people had been “yelling in my face all night” because of the inconvenience of having to find their way to the back entrance to the building.  “One woman was freaking out because they shut off elevator access to the first floor, the elevator went down and the door wouldn’t open so she came out here and was screaming ‘what the hell!?  I was stuck in the elevator!'” (I doubt very much that she was screaming.  This is a young man in his twenties.  To him, any woman who is angry and verbal is likely seen as “screaming”, so I took it as a cultural hyperbole meant to convey the intensity of her emotional state).

Meanwhile, I’m thinking “that totally could’ve been me”.  “Uh, yeah, what about people with disabilities?” I asked him.

“Whaddya mean?” he said.

“I mean what if someone with a wheelchair or a brace or a walker wanted to get in…or out of the building tonight?  What are they supposed to do?”  He shrugged and gestured to the doors and the stairs that lay just beyond them.  “You’re kidding me, no plan?”

“Nope.  I guess carry them?” he said laughing.

I was pissed off.  I was personally pissed off because there are days when I HAVE to use the accessible entrance to get in and out of my building.  If was just a matter of them locking the door but with security there, and it was one of those days, I could ask to have it unlocked.  But they turned off the elevator.  No way to get down there even.

As I was in the car and going past the front entrance of the building, I saw that there was a cop standing in front of the accessible door, arms folded across his chest, looking imposing.  I suppose he was the one who was turning people away who were approaching the entrance from the street.  Man, it’s a good thing I didn’t know he was out there.  I have such authority issues, and I was so pissed.  I’d have been over to him in a flash, asking him to explain what the hell someone in a wheelchair was supposed to do.  Cops LOVE that kind of attitude, women “screaming” in their faces and what not.  Like I said, good thing I didn’t know he was there until I was safely separated from him by the car door, mechanical motion, and the busy street traffic.

I was pissed off on principle too.  I have seen people in wheelchairs and scooters in my building.  I know that they would have been left stranded, either on the sidewalk trying to get in or (possibly worse, I think) on the second floor without a way out.  I had troubling dreams last night about needing to use a guide dog and no one believing that I needed the dog.  I woke up a few hours after falling asleep, remembered the end of the day and the door thing, and was pissed off all over again.

So, not employee appreciation, recognition.  But apparently not even recognition for the disabled employees.


One of the things that marks my current job as different from my last is the preponderance of administratively condoned (enforced) social events.  They are, thankfully, on site.  I’ve attended them, even though they usually require hauling myself around a hilly and pedestrian congested part of my city.  I haven’t attended all of them, but many.  I’ve attended even when I couldn’t eat anything there, since these are work parties and the only way to mark a party at work from a meeting or other gathering is to add festive food.

We had one such event yesterday.  Thankfully, it was a Friday.  This is a good thing since for me, the parties are often physically difficult.  Even when they don’t require walking a distance that is a “nice walk” to everyone else but a death march to me, they involve doing physically taxing things like standing for a long time in a crowded and not well temperature controlled room.  I often feel unwell during and after.  Yesterday’s was a very short walk, just down the hall.  Of course I’ll go!  A chance to show my face and get counted as prosocial without having to worry about getting hurt just getting there is not something to pass up.

The invite announced that this would be a halloween themed event, including snacks, games, and pumpkin painting.  Well, at least I can do the pumpkin painting, so that’s nice, I thought.

I get there and I’m immediately greeted by two women who I know and am very distantly friendly with.  This distance is not my choice, it’s just there.  I’d like ways to move through it to more friendly, it’s nice to have friends at work.  But this is not happening.  We don’t work together much at all, and when we do it’s at quite big events where there isn’t much space or time for interacting.  So we’re politely friendly work people, not friends.  “Hey, Dyspatient wore something festive!” they announce, seeing my rust/orange sweater that I wore yesterday.  I made some remark that I intended to be nice, then pointed out that other people (including them) were wearing black…the sentiment was that not enough were.  Ok.  Then they moved off to more exciting and fun people who they were actually friends with.  I said hi to the few people I did have a history of chatting with, a very small set.  I stood on the edges of several conversations and tried to jump in…now please keep in mind that while I can be socially awkward, I am not generally. I’m funny, empathetic, a good listener, and more or less outgoing.  I’m not the life of the party,  but certainly not the death of it either.  I am, however, often not feeling well these days and standing and chatting boisterously as I used to is not an option.  I can do it for a few minutes but then I have to sit down and quiet down a bit.  Probably with a strange look on my face on account of the pain, dizziness, or nausea.   I think this is starting to come across to my coworkers as anti-social.  I mention the strange look on my face because I think that my countenance often betrays my not feeling well.  I have what I call the opposite of a poker face.  I’ve had friends and acquaintances remark that my general state of mind if not actual emotions are quite apparent on my face.  I try to keep this under wraps but it is just the way I am.  Big eyes.  I think that’s the key part of it.  If eyes are the window of the soul, then mine are bay windows offering a panoramic view of pain more often than not these days.  That makes people uncomfortable, even if they interpret it correctly…which I think few of them do.

So, now what?  I thought.  Now, under normal circumstances, I’d go browse the food table, maybe strike up a conversation with some unattached person who is over looking at the same food I am.  Except browsing the food is an exercise in futility for me.  Games?  The game was “pin the nose on the jack o’lantern”, and to be honest, not very popular.  I watched a person get blindfolded and spun around and though “oh hell no”.  Ah, pumpkin painting.  There, I can do that.  No one else is though.  Well, I’ll break ground on it.  Sure, what the hell.  One of the two remotely friendly coworkers saw me making my way to the pumpkins…. “Yeah!  Paint a pumpkin!” she called encouragingly.  Why not.

I’ll tell you why not.  Because I was the only person painting mother flipping pumpkins.

I’m referring to it as “awkward pumpkin painting”.  I was chatty with people who came by, suggesting that they also paint one.  One young intern either came over or was dispatched to the pumpkin painting station.  She was clearly a bit uncomfortable, I could tell because she’s a blusher.  We chatted while she painted herself a minimalist jack o’lantern themed pumpkin, then she was gone and it was back to just me.  A woman who is my boss’s boss’s boss (and the boss of everyone there) came by and said “Ah, you’re artistic….I can’t even draw”.  I said “Oh no, I can’t either.  The trick is you just have to not care.”  No pumpkin painting for her.

Well, I have two nicely painted pumpkins out of the deal.  I can’t shake the feeling that these events are becoming more and more of a chore though.  I’m inclined to bring a book to the next one, I mean since we’re reliving scenes from junior high school, I may as well fully embrace the part and return to being that friendly but quiet kid in the corner with her nose in a book.


we apologize for the inconvenience…

As I continue to work with a chronic illness, I am developing a real phobia of the term “inconvenience”.  On the subway, “inconvenience” means impassable obstacles such as a steep mountain of stairs between you and the street.  At work, it translates into no food, pain, migraines, fatigue.

I was thinking last week about what I would paint or draw if I could paint or draw.  It would be a series of dyadic scenes, one side is “what you see” and the other is “what I see”.  Keyboard and desk on one side; torture device on the other.  Rambling path through a hilly, sunlit park with people on bicycles, babies in carriages, and children on roller skates on one side; scorched, Escheresque hellscape crawling with demons on the other.

I’m thinking about this today because we have a standing meeting that was rescheduled from its usual standing time of my work start time to a half hour earlier.  It is also on the other side of a steep, cobblestoned hill (the short path involving slippery marble steps…the long path involving hordes of clueless undergrads, perpetual sidewalk construction, and other “inconveniences”).  Our receptionist also scheduled me for a back to back, so I have a meeting at my office (on the other side of the hill) set for exactly when the prior meeting ends.  Not ok, since the prior meeting always goes long and it takes me twice as long as my colleagues to walk back to our building after.  And if I want lunch today, I will have to drag that with me all the way, hoping that it is not getting too warm for the hour and a half or more that it’s not refrigerated (remember, my soft food/liquid diet = soups and puddings).  So I guess it’s to be pain and fasting for me today.  We apologize for the inconvenience.

Fired up

I think I need to fire my GI doc.  Again.  Another GI doc down the tubes.  The most recent of the GI doc follies came last night, around 9:00 PM, when mine called me to tell me that she needed to cancel the appointment I set up with her for today.  This would be ok, if it weren’t coming on the heels of her basically abandoning me in the middle of a medication crisis in August.  I hesitate to use that word, “crisis” because it sounds so alarmist, but there isn’t a better word for it.  “Snafu” sounds too cutesy to describe what happens when your med starts giving you creepy side effects that mean you have to either massively reduce (to the point in ineffectual) or stop the med.  We talked then, right when it happened, by phone.  She told me to follow up “mid week”, neglecting to mention that she was about to leave the fucking country.

I followed up Wednesday that week, and as is usual for her, she didn’t call back.  Eh, I figured, not knowing that she was about to high tail it to Europe, I’ll just call again tomorrow.  Tomorrow came and went and no reply from her.  I called the next day and was told she was out of the country for two weeks.  Well, fuck me!  “Do you want us to have the covering doctor call you back?” her office staff asked me.  “Yes, I guess so,” I told them.  Then I waited.  And again, no call back.

I finally called again and made an appointment to see my doctor.  “What’s the reason for the appointment?” “To check in on my medications, management of the gastroparesis, and to discuss communication.”  Her first appointment was for over a month away, but I took it.  And in the meantime, I managed my own god damned meds and did a better job than she’d done.  I gained weight finally.  Not a ton, but I’m back over 120 lbs and heading towards 125-land, still less than I weighed when this started and still too small for most of my wardrobe, but within a normal range for my size and age.  And then she calls and leaves me a message that she has to cancel the appointment and I should call her secretary today to set up something else that is “convenient” for me.

Hey, you know what would have been convenient for me?  For you to return your god damned calls.  To keep your appointments.  I’m not inflexible, I know things come up but with this doc, that is the norm.  If I were not working, I could perhaps make this shit work.  My primary care routinely runs 2 hours late for appointments, but with his office, you can call and they will tell you how late he’s running.  With GI doc, her office keeps up the pretense that she has her shit together so if you  call, you’re told to come at your appointment time, then you will wait over 2 hours to be seen.  That coupled with the August abandonment and then this most recent malarkey is too much.  Oh and I should mention that the bad feelings that getting this call so late at night raised for me kept me up until 2:00 AM.  On a work night.   So I think it’s time.  I need to find a new GI, which is one of my least favorite things to do.  I had been considering changing within the practice to a different doc, but the no call back from the covering doctor in August leaves me feeling a bit hesitant to do that.  If that’s a sign of how they run things over there, and if I have to go through the trouble of starting over with another doc, it may be just as well to leave her practice entirely.  :/