not invisible

The limitations that my health problems impose on me are disabilities.  I define disability, at its most basic functional form, contextually.  This stands in contrast with notions of “crippled”, “invalid” (stress on the first syllable), and “diseased” as more inherent properties.  This latter set of categories share the property of being relatively static.  They describe a state that, while it may be transitory over time, is enduring while it is experienced regardless of what the experiencer is doing or where or how the experiencer is doing it.  E.g., if you are sick, you are sick whether you’re standing, walking, laying down, playing a game, working…you get the idea.  So while I think these categories are useful definitions of condition, they do not encompass the situations where your condition plus your context results in limitations, changes, non-normative participation in events.   For that, we have the concept of disability.  I’m still working on this as a formal argument, but the basic, inelegant definition I propose is that disability is not being able to do the things you want to do when you want to do and how you want to do them.  It can also be, and frequently is, not being able to do what others want you to do, when they want you to do it, and how they want you to do it.

I believe that this functional definition has implications for what I would argue is a false label of “invisible” disability.  First off, it should be called “imperceivable” and not “invisible” since into the category of “visible” disability would go aphasia, for example, which is not seen (the condition causing it may be, if you’re a doctor doing neuroimaging).  But I’m willing to give a pass on “invisible” as a short hand for “imperceivable” and not really attack that.  It’s not the modality of the phrase or idea with which I take issue.  It’s the idea that disability is “invisible”, ever.  As I believe disability should be properly, practically defined, there is just no way it can be invisible.

  • Condition that limits ability to move. (Cause is often not visible, except in case of amputation or significant atrophy/”deformity”.)   
    • Visible disability example: using a mobility aid.  
    • Invisible disability example:  walking with pain, walking slowly, avoiding lifting or moving things, not participating in events that will require you to move a lot.  
  • Condition that limits ability to visually perceive as “normals” do, either entirely or partially.
    • Visible disability example:  wearing glasses, using a guide dog, a cane.  
    • Invisible disability example:  squinting, positioning yourself to increase what you can see.

You can do this exhaustively.  The point is that what falls into “invisible” is not invisible.  Your co-workers, family, friends, they all do not fail to perceive that you are asking “what’s that?” when your tinnitus or auditory processing deficit means you can’t hear what they’re saying in a slightly noisey environment.  It’s not like the people you work with don’t notice you showing up to work late if you couldn’t get out of the house for the number of bathroom visits you had to make.  Your mother in law most certainly was aware that you were not chipper and helpful last Christmas when you suffered through dinner with a raging migraine.

What is invisible in these things we call invisible disability is not the disability but the actually cause, condition, state.  The disability itself is often quite perceivable, however the cause is misattributed.  The misattribution is not a property of “the afflicted”, it’s a property of the perceiver.  If you want to test that, just go ahead and disclose and watch how people still fail to apply the knowledge of cause to the observable consequences.  They will decide instead that you are just not being a team player, that you’re lazy, that you’re weak, that you’re not trying hard enough, that you’re not committed, that you don’t care, that you are angry, that you are unhappy, that you don’t like them, that you’re stuck up….oh I could fill a page with what explanations people give to observed disabilities.  Listing them doesn’t answer why.  It only helps to show that there is a rigid and compelling tendency to assign an antisocial cause to inadequacy, insufficiency, non-normal, behavior…compelling because they do it despite knowing exactly what is the reason.  Rigid because you can tell them over and over and they will claim to get it but then fail to apply it.  How can the knowledge exist and not be applied?  That’s largely rhetorical but if you want to take a stab at answering it, please do.  The best I can come up with has to do with a basic level of entitlement which is threatened when it is confronted by someone who is asking for, taking, or making allowances.  It makes me feel very misanthropic.

The take away message for me is that calling disabilities like these “invisible” is letting other people off the hook for their own inability to be sensitive, empathetic, and accommodating of people who are struggling to do the best they can with the far less than ideal set of tools life’s stuck them with.

Miralax, how I love you

A week straight of anti-nausea meds, two days of limited fluids due to test preps, and my incredibly touchy gut = bad.  While it happens infrequently, when I do get backed up, it is a nightmare.  My gut continues to fire, it’s discoordinated muscle contractions continue to happen.  Just now, they are more like a child having a tantrum.  Just screaming its head off and stomping its feet and nothing much coming of it.  Maybe a broken lamp.

I’m the lamp in that analogy.  Totally screwed up my weekend.

So yesterday, after suffering through a day of tantrums and then waking up to more of the same plus vomiting, I called my new GI doc.  I do not love her.  But she did call back quickly.  And when I explained what was up and that I needed some guidance on what to take and how to take it (outside of the few bowel preps I’ve done, I have very little call for taking things that accelerate my intestinal transit), she was very good and worked with me not only to recommend OTC meds, but to explain what each was, how it worked, how much to take, and how to time things.  And ended with a “please call me if you have any trouble.”

You know, this can be taught in med school.  I don’t think this woman is particularly fantastic.  I think she has some tools that allow her to handle a Sunday afternoon page for something that might be seen as silly with some grace and apparent consideration.

So, Miralax and a box of Dulcolax suppositories.  I took the Miralax as she recommended, one dose, waited an hour, not much happening so took a second and that started things going.  Slowly but surely.  Thankfully, I have not had to use the Dulcolax.  Thankful because I am reluctant to take a stimulant laxative.  It’s not that my gut lacks contractions.  I have a very strong sense that they happen, but they are timed wrong.  In my former life as a researcher, I worked with a group that did coordination research.  They were a multidisciplinary group that combined research in cognition and kinesiology to look at human perception and action.  An interesting subject.  I recall sitting through quite a few lectures on inter and intra-person coordination of action.  I know some basic concepts of phase relations in this setting.  One of the big problems with my gut is that there is a phase problem.  Think of it like a drunk trying to milk a cow.  That’s the basic idea.  Usually, the cow’s ready to go and just suffers through the drunk’s manhandling.  But right now, the cow’s not doing so good and I think to add a stimulant on top of that would be like giving said drunk a whole lot of 5 hour energy drink and then letting him at said cow.  A complete disaster.

the slippery slope

Today’s news brought to mind issues of stigma, how revealed traits and social ties can help to knock it down, and the difficulties of being charged with that task.

The news item I’m referencing is the story that an apparently prominent U.S. republican senator has come out in favor of same sex marriage.  He attributes this break with this element of his party’s widely held and harshly wielded platform to the somewhat recent knowledge that one of his sons is gay.

“My son came to Jane, my wife, and I, told us that he was gay, and that it was not a choice, and that it’s just part of who he is, and that’s who he’d been that way for as long as he could remember,” said Portman.

What was the Republican senator’s reaction?
“Love. Support,” responded Portman.

From One conservative’s dramatic reversal on gay marriage, By Dana Bash, CNN Chief Congressional Correspondent, March 15, 2013.

This has sparked a debate among my friends on Facebook. Not about whether same sex marriage should be legal.  With the exceptions of a few inlaws hanging out in my “friends” list, I can say with certainty that 100% of (the rest of) my friends on FB are pro-gay marriage.  I do not FB friend indiscriminately.  Despite having been on FB for a long time, I have fewer than 100 friends and that number stays relatively stable.  The debate has been along the lines of “oh now that this guy has a son who is gay, he’s ok with gay.  Hypocrite!” vs. “when things affect us personally, our world view changes…”  I come down on the side of the latter, although I have to claim that I had the “hypocrite!” reaction too.  That was my initial reaction, soon followed by the recognition that it is through social interaction that humans develop a sense of “other” and it is through meaningful social interactions and positive connections that we develop a sense of acceptance for those “others”.

Part one:  Invisible chronic illness (ICI) comes with intense stigma.  Disease is stigmatized, but there is increasing tension if the illness is invisible, chronic, and if “the afflicted” is female.

If the trait is considered bad, then the person with it is considered bad.  That is my quick and sloppy definition of stigma, which holds for not so clearly “sinful” traits as well (see Part Two below).  So what’s the stigma of the ICI?  The stigma is twofold.  There is the “disease = bad” that all people with an illness or a disease-perceived disability deal with.  For those with a chronic illness, there is the added issue of their illness going against the collective disease narrative which people without a chronic illness have constructed for themselves (and everyone else).  You get sick.  You get better.  The end.  Chronic illness, chronic evolving illness, violates this and it challenges people.  And the common unexamined reaction to that challenge is to get pissed off.  Pissed off at yourself if you’re “the afflicted” for not being able to do what you used to be able to do, or for doing something that makes things worse because you try to do what you used to be able to do…etc.  Pissed off at your coworker, e.g., for taking so much time off this month.  And so on.  For a chronic, evolving illness which is invisible (or largely invisible), the stigma manifests in reactions which state or suggest that “the afflicted” is not afflicted with anything save a desire to cop out, get attention, get a break, complain, openly express feelings that we are supposed to lock up (disappointment, frustration, anger, fear, sorrow).  If you can’t see it or quantify it in a lab value, you can easily believe that the afflicted is looking for a pass on social requirements.  And this explains why women with ICI are so extra screwed.  The first woman most of us know is mom.  Mom is a special kind of saint.  Mom makes food for you from her body.  Mom changes your diaper when its full, relieving you of a set of what must be truly unpleasant sensations.  Mom picks up after you.  Oh I know, there are bad mommies out there but let’s use those exceptions to prove the practically universally held concept of MOM, which is one that starts and becomes fixed at a quite young age, when MOM exists to serve and love you.  Mom does NOT walk into the room and say “you know what kid?  change yourself!  I’m exhausted and can’t even stand up right now let alone deal with your diaper full of poop.”  When moms are shown doing or reported to have done anything other than being that serving MOM, there is undisguised public revilement (I say public because while people seem to feel a deep and rewarding compulsion to jump on the “bad mommy” bandwagon in public responses to abuse and neglect by a mother, few of them are willing to actually do things to make this abuse and neglect less likely to happen).  A woman is a potential MOM.  It is part of what defines her as a woman.  And a MOM who doesn’t make dinner, who needs help with the laundry, who doesn’t put the secondary social needs of her relations over her own physical well being, who doesn’t act/talk/look gracious and effortless in doing what she should properly do is a BAD MOMMY.  You put a woman with an ICI into any social context and you will very quickly see both internal and external struggles about power and efficacy all of them with the threat of being labeled as selfish (the cardinal sin of MOMs) lurking around every corner.

So many women I meet, virtually or in person, who have an ICI seem to have at least one significant source of unsupportive, stigma enforcing people in their lives.  Often, there’s at least one source per sphere.  Some at work, some at home, some friends, some at the doctors’ offices, some extended family.  I wonder sometimes, about myself, if the source is actually me.  Am I just projecting my internal struggles with feeling like I fall short of what I want to be and do onto others?  Yes.  I know I am.  But this doesn’t mean that there aren’t also people out there who are quick if not happy to also judge me negatively for displaying traits of an ICI.  The two feed on each other.  This is the slippery slope.  It doesn’t take much evidence of unsupport for me to get into a nasty cycle of feeling bad about me and feeling bad about others.

Part two:  I think support doesn’t come without love, and I wonder if you can have love without support.

I personally feel the answer is no.  I realize that this goes against what we are told, what is codified in the saying of “love the sinner, hate the sin”.  I am reflecting on ICI because it is my own personal experience but also because it shares the features of concealable and unchosen with sexual orientation, what kicked of this meandering.  Knowing and loving someone with an ICI bestows a better understanding of the experiences from perspectives ranging from first person (the observed “afflicted” beloved), to second person (the experiencing belover of the “afflicted”), and even to filtered third person (the doctors, the extended family, the coworkers of the “afflicted” beloved and belover).  That understanding extends beyond the immediate relationship and to others who are in similar contexts.  Consider the old friends I connected with around Christmas this year.  If you aren’t up for following the link to that post, the short version is I that despite disclosing, I experienced a relatively warm and supportive interaction with some friends who I hadn’t seen since before I was a person with an ICI.  I suspect a lot of this was due to the shortness of the interaction, but I felt some of it came from the fact that one of the more socially leading of this set of friends has a son who was born with a heart defect.  This was cause for a health crisis immediately after the son’s birth and has become an ICI now in the child’s older years.  And not to disparage my friends, but I suspect that lacking that experience, they would not have been as supportive and warm.  I strongly feel it is human nature to be cruel about things you don’t understand.  We are wired to judge quickly, even to prejudge, and to act on those judgments.  And from that wiring comes behavior we classify as bias and bigotry in otherwise “nice” people.*

I think that support comes from love, even if it is not for the exact person supported.  My friend can love his son who has an ICI, support his son who has an ICI, and extend some of that support to me.  And my husband can love me, support me, and extend that support to others with ICIs.    But what about the people who love someone with an ICI but do not support them?  Me, I’d argue that they don’t truly love.  Maybe they don’t truly love that person.  Or maybe they don’t truly love.  Maybe they have some predisposition to narcissism, some inherent limitation of empathy, too much resentment for anyone else who they think is “getting a break” while they are left to struggle with their own personal burdens.  All of these things are impediments to caring about anyone to the degree that you  care about yourself.

Part three:  You  cannot change minds if you don’t disclose but god damn, it sucks to be the one disclosing.

I have and still do try to deal with the stigma through concealment.  I try not to disclose or I am consumed by managing who I disclose what to.  This is because I used to be a much more open person.  I assumed others were as willing as I was to listen to other people.  I present as evidence my past belief that when people asked “how are you?” they really wanted to know.  I really wanted to know when I asked. I wouldn’t have asked if I hadn’t, or if I hadn’t had time.  Oh but the glazed looks on people’s faces finally sunk in.  Hey guess what?  For the most part, they don’t give a shit.  They are not asking a question.  They are making a salutation.  The two are not the same.  Amazing that it took me a degree in linguistics and nearly 30 years of life to figure this out.  Now I ask and answer this “question” with impunity.  “Great!”  or “not bad!”  I’m glad I figured this out before I got sick.  I do feel the tension when a coworker – who has been affected by a recent schedule change due to my ICI – asks me the next time they see me “how are you?” I do feel a twinge of “oh crap…do I play it cool and provide the socially acceptable but factually inaccurate answer which might, if they are thinking about it, make them wonder “well if you’re fucking ‘great’ today, why the hell weren’t you here yesterday afternoon?!” but at least I know I have a choice in how to answer.  More often than not, my answer in such a situation is a compromise between socially acceptable and factually accurate response, i.e. “alright, thanks…and you?”  It is one of the strategies of concealment which anyone with an ICI understands.  Concealment can work for a short time, for interactions limited by short duration or infrequent occurrences.  Over time there comes a point where even if I am working really hard to hide my ICI, it shows.  I might pass out.  I might have to take my shoes off or put my legs up because my blood is pooling in my feet and they feel like they are on fire.  I might not be able to walk as fast as my colleagues when we are leaving the office at the same time to attend a meeting nearly a mile’s walk from our building.  I might choose not to leave at the same time so I don’t have to worry about being seen to not keep up, which might make me seem to be anti-social.  I might have to leave work early for a doctors appointment, or come in late because I didn’t factor the hour lost to an unexpected vagal episode into my morning routine.  I might not be able to take a trip to California to see my inlaws.  I might have to cancel my vacation and answer questions at work about why I canceled it.

I have also tried to deal with the stigma through disclosure and trying to force acceptance on myself and others.  This, I am not so good at.  My use of the word “force” is not accidental.  I’d like to say “engender” but the reality is I have no idea how to do something so subtle.  I am largely graceless in my attempts to play the respectable sicky.  Some of this is just my nature, me pre-sick. I’m really much more of a “yeah that’s what it is, so what are you gonna do about it?” person when it comes to protecting the weak, which now includes me.  However, I have mellowed with time.  I have a few more tools in that toolbox.  But when it comes to me and my illness, that toolbox is waaaaaay out of reach on account of the piles of self recrimination, disappointment, frustration, and grief which I have surrounding my own feelings about me and my broken, bastard of a body.

Here’s what I do know though.  My husband loves me.  And he supports me.  He is now one more person, like my friend with the son with the heart defect, who will be an ambassador for people like me.  The more people I can get in my corner, the more people I can get in all our corners.  When I can, I will come out.  And when I can, I will build allies, even if they are only temporary.  It helps to feel like I am doing this for more than myself.

Ok, well I’m done for now.  Now, I’m off to shower up and then go for an upper endoscopy to find out why my body is playing this new trick of unending, intense nausea.  Here’s hoping there’s an addressable answer in my stomach and that it’s not just one more unmeasurable and therefore invalidated new fact of my life.

* it would be a gross oversimplification to misapply this to explain all bias and bigotry.  What I’m describing is the human tendency (and perhaps evolutionary necessity) to take cognitive short cuts which can lead to carelessly cruel behavior that is the sort of unintentional bigotry we all have experience with.  I do not think that this or this alone can account for intentional cruelty and abuse.

fast

I am fasting.  I hate this because it means no water, and no coffee.  Prepping for an ultrasound of my liver and gallbladder at 10:00.  Really tough to schedule this thing.  It kinda makes you understand why people just go to the ER.  Not me though.  Nope, I med up and go to work.  I was thinking about this yesterday, that most medical providers would assume if you’re ok enough to go to work, you’re not sick.  Or not that sick.  This rule does not apply for me.  I go to work with a BP of 84/47.  I’ve worked with a migraine, not well, but I’ve done it.  If I have a ride and a private place where I can close the door and whimper to myself when I’m feeling really terrible, there’s a lot I can work through if I need to, and right now I  need to since I had a massive sick day use month in February.

So, it’s fasting, ultrasound, then trying to work after if I can manage.  Yuck.  I’m not even sure I can break the fast either, since if the ultrasound is normal, they’re going to try to tack me on as a scope at the end of the day.  So maybe water and black coffee after the scan if they don’t dick around getting me in on time, but that’s it.

something funny

That’s what I needed this morning.  I thought I’d turned a corner on the nausea since it hadn’t been too bad for a day or two.  Yes, more evidence that I am – despite outward appearances – actually an optimist.  But last night, it was back in a big bad way – it woke me up twice – and I woke up again this morning to it.  Guess the zofran wore off.  So more zofran this AM and some Onion.

photo of red onion

No, not that kind.

This kind:  Procrastinating Surgeon Putting Off Coronary Bypass By Cleaning Entire Hospital

(Photo credit: Killiondude, September 29, 2009, Whole onion.jpg, via wikimedia commons Creative Commons)

calling all gallbladders

Ok friends.  Several regular visitors to this blog have had gallbladder disease.  I need your input.  Tell me about your early symptoms.  I know that’s not always easy, since those of us with chronic health issues tend to blow off, minimize, or otherwise downplay (and ignore) new and subtle symptoms.  So if you can’t recall the super early stages, I understand.  I know what an attack of acute gallbladder pain looks like.  I’m not so sure about the grinding day to day of smoldering or building gallbladder disease.  And I’d like to because I’d like to know how hard to push on looking into this nausea and upper abdominal pain that is becoming a daily thing.

My ECBF (ex cohabitating boyfriend) had gallstones that got him all screwed up for a bit.  They presented themselves loudly shortly after a Halloween party one year.  We had eaten loads of nummy things that night, including stuffed mushrooms, which could quite accurately be described as mushroom coated fat balls (butter and I believe the stuffing had sausage in it).  He woke up in the middle of the night with horrible abdominal pain, power-puking several times, diaphoretic, and just plain ol’sick as a dog.  We thought maybe he had food poisoning at first, but the pain was so intense and a puking type 1 diabetic is a bad thing, so I took him to the ED.  Pancreatitis, said the labwork.  He was admitted to Ye Olde New England Outback Memorial Hospitale for a week while the Olde Timey Gastroenterologist did some tests, including a HIDA scan.  While the doc was competent enough to order it, he was not competent enough to interpret it.  The results were “within normal limits” and so the Olde Timey doc ruled out gallbladder and called it diabetic gastroparesis.  Big surprise, an MRI a month later confirmed that the ECBF had gallstones.  Reflecting on the months leading up to the pancreatitis, ECBF did have symptoms.  He’d feel sick, need to lay down, usually after he’d been over at the family’s house (eating bad things).  We only put that together after the fact.  And while ECBF certainly complained about his state in the interim, it was hard to get a sense of timing of symptoms since he was treating his gut and gallbladder so badly during that whole period.  He continued to eat food that seemed to trigger or worsen his symptoms – often at the urging of his evil family.  It was like watching an afterschool special, where the schoolyard “bad kids” were his parents and uncles and instead of trying to get him to smoke a cigarette, they were trying to get him to eat bacon cheeseburgers and wash them down with a few shots of whiskey.  Basically, they were a family with a family-wide eating disorder on top of family-wide alcoholism.  DEEEEElightful people.  So against that backdrop, it was hard to tell what the bare bones symptoms of ECBF’s gallbladder ailment were.  You know?  I mean, it’s like you have a rash on your arm that has some nice specific characteristics, but then you take flame thrower to it and then you go to the dermatologist and say “hey what’s causing this rash on my arm?”

So I’m asking you.  I know at least two of you have had gallbladder disease, Mo and Ana…and probably others, forgive me if I’ve forgotten.  If you don’t mind, let me know what it feels like in a person who is not filling their guts full of badness.  What’s it like when you’re doing the best you can to take care of yourself but still have this happening anyhow.  For me, whatever is going on, it’s daily nausea that reaches crazy levels and that somewhat strangely seems relieved by eating.  It comes back/starts up again within about an hour of eating, building up to the crazy bad again.  The pain is sharp and very much in the upper abdomen, so upper that it feels like I should call it my “lower chest”.  I suppose it’s properly “epigastric”.

stupid decisions

I am faced with some, mine and others.  My own include the decision to go on a trip in about a week.  The trip involves plane travel and a lot of time off of work.  Ok, not a ton but for someone who has a lot of sick time use, taking 4  days to just f-off is a lot.  And I am apprehensive about it.  Extra apprehensive since I used a CRAPton of sick time last month due to getting the flu on top of all the usual, day to day stuff my body throws at me.  And hey, here’s a new day to day thing it’s throwing at me.  A new trick.  Severe nausea and upper abdominal pain.  What’s up?  No idea.  Is the liver unhappy from the several weeks of fluconazole?  Is my gallbladder acting up?  I’ve never had gallbladder problems, but why not, right?  It’s a strange nausea, a sort that is relieved by eating and then creeps back in within an hour or so of my eating, ramping up until I find myself checking potential puke receptacles in my immediate area.  I’m telling you, this is some intense nausea.  I’ve had less post-op.

Satellite image of Winter Storm Saturn at 9:45 am EST Friday March 8, 2013.

Nor’easter in the north east? How unexpected!

Why is that relevant to the aforementioned trip?  Because I hadn’t counted on it in my “yeah I think I can do this” estimate for travel.  I hadn’t counted on a new and resource sapping symptom that I’d have to haul around like an oversized carry-on.  And I certainly hadn’t factored it and the week of flu-based sick-time into my equation of “do I have enough time off at work to do this?”

Others’ stupid decisions include work not closing yesterday.  Up here in Big Northeastern City, we had a bit of a nasty storm Thursday night into Friday.  It was predicted to drop 1 to 2 inches of snow, then blow on out to sea.  Instead, it stalled and dumped pile after pile of snow on both Big Northeastern City and Ye Olde New England town where I live…which is just south west of the city and just high enough into the hills that we get about 1.5 times the snow the city and more coastal areas get.  Everything around Big City closed Friday, and consequently few plows were seen, most going by with blades up.  But the Mayor of Big City made his the decision about whether to call a snow emergency based on the forecasts and the current weather reports, which continued to be dead wrong well past the point where a quick look out the window would show anyone just how dead wrong they were.  Hard to rely on a weather report that’s saying “1 to 2 inches of snow” when there is clearly at least 6 inches on the ground already and snow coming down at about an inch an hour.  But rely on it they did, and as goes Big City, so goes my employer.  Eventually, when there was about a foot of snow in Big City and when our Olde New England hill town was cemented in under the shovel breaking burden of well over a foot of heavy wet snow, my employer sent out the usual email, text message, and phone call alert that they would be closing shortly.  Ye Olde New England Town got a total snowfall of just over 29 inches, btw.  Big city has not exactly advertised storm totals, but I’m seeing at least 13 inches.

All Friday morning, I sat here sweating my decision to stay home, to take more of my earned time off after a month full of absences, and a week before I am to go away for a fun and nausea filled “vacation”, from which I may need time off after to recover.  My boss has been tetchy lately, and most recently (Thursday in fact, the day before the big storm) gave me a bit of shit about when and how I can work from home (she has to approve it in advance…all well and good for times when I know in advance that I am not feeling good enough to get and stay at work, but not so great for times when I wake up feeling crappy and can’t manage it but could manage 8 hours at home).  So yesterday, I had to make the unpleasant call of saying “Ok, well we just broke a shovel trying to dig out, it’s still coming down, the road hasn’t been touched, so I am not going to be able to get in today and” because I didn’t have advance notice to ask if I could work at home “I will be taking a personal day.”  And all because the people who had to decide about canceling or limiting business as usual abdicated that responsibility.  Yeah, I said abdicated.  I don’t count yesterday’s “business as usual” approach to a major storm as simply a bad call.  I count it as my employer saying “but the mayor said it’s ok!” and the mayor saying “but the weather forecast said it was ok…” and so on.  Anyone with half a brain and who has lived in Big Northeastern City knows that Nor’easters go bad with some regularity and to stick to a shitty forecast despite clear evidence that the forecast was shitty is not doing your damned job.

The weather here is like my body.  To say that a worse than expected storm is unaddressable (both before and during the fact) is a load of hooey.  Where we live, Nor’easters come.  And sometimes they come, then stall out and just camp over the area, dumping a whole bunch of snow.  While it may be unlikely that this will happen – much like it’s unlikely I will get on my plane and then re-enact the puking scene from The Exorcist – it is possible…and certainly within the realm of somewhat probable outcomes.  So why not plan for the possibility that the storm will be bad?  Or why not at least change plans when it becomes clear that things are worse than expected?

Since this is how I think, I am wondering about my trip.  Do I cancel it?  Do I shorten it?  I will be letting a lot of people down.  But if I go and am sick, it’s going to suck and be full of letting people down anyhow.  And I may end up missing MORE work on the back end when I get home from the trip from hell and am flattened.

I’m stuck with the reality that I am oriented in a vastly different way to trouble than most other people.  I am willing to acknowledge that perhaps I swing a bit far on the limitation side of things, but that is because I absolutely hate getting stuck in that tree (see this post for an explanation of what it means to be “stuck in the tree”).  Do other people just assume that someone will come and save them when they make a dumb decision?  What about when they are deciding for others?  Because for me, I always feel like my decisions about what I  can and can’t do involve others.  They involve my co-workers, my husband, my friends…anyone who I might commit to and then have to reneg on because my body had the equivalent of an unexpectedly stalled Nor’easter.  And while I might be ok with beating up on myself (I’m not usually, but I might be), I am most certainly NOT ok with signing them all up to deal with the consequences.

(Photo credit:  NASA/GSFC.  Satellite image of Winter Storm Saturn at 9:45 am EST Friday March 8, 2013.)

over billing and underpaying

Last week’s mail brought some unpleasant surprises.

Surprise 1:  A bill from BATH for PT/OT.  Which I paid, in person, during therapy.  Which they already tried to double bill me on once and which I already took the time to call them about.  No date of service on this one so I’ll get to start off with wrangling that info out of the complete, blithering morons who work in their billing office.  This is the 3rd time this particular BATH has tried to double bill me.  Both previous times were their error and I am 100% sure this one is too.

Surprise 2:  New dentist sent me a bill.  For what?  A filling it seems.  I compared the pay out from my insurance and what my payment was to be.  Paid that.  Yep.  And still this mystery bill.  So I get to call them and ask wtf?

Surprise 3:  My husband was sent a request for justification from an outside review agency about “medical treatment” I received in October.  Labs, to be precise.  In addition to alerting me that my insurance company would like to find a way to squirm out of paying for these labs (and, I later learned, for the PT I got in December/January), the letter was all shitty and started with “this is your SECOND notice”.  I called and lit into them, starting with “what is this, 1950?  If you have a question about MY healthcare and MY health, you ask ME.  You address your correspondence to ME.  Not my husband.  I am not a minor.  I am not mentally incapacitated.”  That settled, I know get to call my health insurance company today to ask wtf too.  Fan-frikking-tastic!  One of the things I am interested in knowing is whether they would prefer a person with EDS and chronic pain simply be treated with addictive narcotics for pain rather than attempt to seek healthier alternatives to pain management.  Because that is why I went to PT.  If they deny this claim, I am going to raise 9 kinds of hell.  My state legislature has recently made significant attempts to limit access to narcotic pain medication in a well intended but, I think, ultimately misguided attempt to reduce abuse of prescription drugs. I am pretty certain they would be interested in hearing about how my insurance company is effectively pushing that option like a corner crack dealer.

 

rescue me

When I was a kid, one of our cats got stuck in a tree.  Several cats had climbed this particular tree but had found their ways back down promptly.  Not this one.  She went up it and then stayed.  The tree had a strange placement, really my whole back yard was strange.  Our yard backed up onto a massive rock formation.  It wasn’t too wide behind our house.  From east to west, it created a relatively flat shelf full of thorny bushes and small trees that went back probably 50 yards or so.  But it was high and long…it ran about a mile to the south, expanding in width as it got further from my house to fill the area between houses and highway.  As the rock bordered our yard, it eased from a steeply dropping rough mound, which rose to the third floor of our house, to a more gradual set of slopes at the north west corner of our house.  The tree grew where those slopes met the ground in piles of large rocks covered in moss and brambles.

The tree wasn’t far from the side of my house where my bedroom was, so at night we could hear the cat crying.  And in the daytime my siblings and I, and the neighborhood kids, would all try to climb up the nearest highest rocks and reach up to coax the cat down.  I distinctly recall smearing most of a can of nine lives cat food onto the rough bark of the tree…no use.  The cat stayed stuck for days.   Why did she go up?  We asked ourselves, each other, my parents.  No good answer.  Why did any cat go up?  It’s what cats do.  Go up trees.  Run around like fools.  Chase squirrels, birds, and other small wildlife that flourished in the woods that grew on and around the rocks.

Another one of our cats decided to come along with us one day during an exploration of the woods.  We were a little older then and ventured quite a bit further.  We packed food and punch.  It was hot out.  We had moved through the wooded areas and broken into what was known as “the crushes”, a sort of gravelly expanse with not a tree in sight.  It was summer, the sun was out, and it was hot.  The cat kept up for a while, but after an hour or so, she started panting.  Shit.  Who’s gonna take the cat back?  No one wanted to be the one but no one wanted to leave her there so near the highway.

Both stories resolved.  Both cats were saved.  The one who got stuck in the tree continued to do not terribly bright things and eventually got lost because she had taken a nap in my dad’s car one summer day (the window was open) then dashed out as soon as he stopped several miles from our house.  The other was a hell of a lot smarter.  She lived a long, happy life of chasing and catching snakes and doing adorable things for nibbles of people food.  She eventually died of natural causes when I was living out in The Great Midwest as a young adult.

You don’t think of cats as needing rescuing.  They’re very independent. They’re little predators even.  But sometimes they do things that get them stuck.

And so it is with 41 year olds with chronic illnesses, it seems.  I hate having to be rescued.  I can honestly say, with the exception of the time I dropped out of college and my parents had to come help me move back home, I have not had to be rescued since I was a little kid.  Actually, now that I think about it, even the times when I properly needed it, like passing out, not one person has done a good job of taking charge.

  • Felt bad at lunch and told the teacher.  She left me alone in the classroom rather than sending me down for lunch.  I started feeling really bad and chose to walk myself to the nurse’s office.  I passed out and came to alone in the hallway.  I was 8.  

    illustration of placing person in recovery position

    Notice how no one is dragging the afflicted person around by his arms…

  • Felt bad on a field trip into Big Historic City in 6th grade.  Told a teacher.  Was told, basically, to just suck it up.  I passed out and came to alone on a bed in the recreated house of a famous US patriot.  
  • Felt bad on a flight to Europe in 11th grade.  Told my brother, who was embarrassed and whose single gesture of “assistance” was to throw the barf bag into my lap.  Passed out.  Came to.  No help.
  • Felt bad at lunch in 11th grade.  Told a friend, who took me to a lunch monitor, my guidance counselor.  Was told to suck it up again, lunch was almost over and I could go to the nurse then.  Passed out and was dragged through the entire lunch room by the guidance counselor and the friend.  
  • Passed out numerous times in numerous bathrooms throughout adolescence and early 20.  Alone, came to alone.  Took care of myself.  
  • Got horribly sick at college, retching and cramping, feeling really faint.  Campus emergency response came and I had to explain that the strange blood pressure readings they were getting were symptomatic of shock and insist that they call a real EMS.  Then had to convince real EMS that my insurance would pay to transport me to the less horrible local hospital, this convincing included calling my dad while in bed, drenched in sweat, not able to see because the graying of my vision had reached such a severe point and I could barely hear for the roaring in my ears.  Got it straightened out, onto the stretcher and started down the stairs, then passed out.
  • Passed out while out for drinks with a friend from work. A nurse.  She left me at the table alone while she went to call 911.  Came to still in a chair with a law student trying to check my pulse with his thumb.  Made my way to the bathroom where I refused to come out of the stall.  
  • Passed out at home on the toilet when I was married to my ex the doctor.  “Oh you go stiff when you pass out” he told me.  “I practically had to break your legs to get you out of there.”  I don’t count this as particularly helpful, although I was grateful that he at least knew an unconscious, upright person is a bad thing.  My legs god damned hurt for weeks.  
  • Passed out on my ex the diabetic.  Started feeling faint, called for help – was ignored.  Staggered into the bedroom then promptly fell, hit my head, and lost consciousness.  I had to insist he take me to the ER after I came around, and I kept asking why my arms hurt so much.  It wasn’t until much later that the idiot admitted he had yanked me up and onto the bed by my arms.  
  • Got a sudden onset migraine at my old job that reached monster proportions.  I felt shaky and like I was going to pass out, I couldn’t see much at all, and I was sooooo nauseous.  I couldn’t hide how sick I was when I told my boss I had to go, and so she decided to “help”.  While my boss and other staff stood around me in the lobby trying to decide if someone would drive me to the ER or just give me the damned taxi number like I had asked for, the vomiting began.  So I dropped to my knees, grabbed the nearest trash can, took out the bag inside and reached in for the extra empty bags I knew the custodial staff put at the bottom of the can, then rocked back up into the chair I had been hunched over in, bag in hand.  Everyone was just staring like “d’uh?”  Yeah, thanks guys.  The staring and doing nothing to assist is really super helpful.

I don’t consider any of those times to be situations where I was rescued, like really rescued.  Like taken care of without stupid arguments, and stupid (sometimes dangerous) behavior.  Or taken care of with cool cloths and even minimal first aid including appropriate body positioning.

Since getting sick(er) in my 30s though, I’ve needed rescuing.  Like the cat, I get places then find I cannot get myself out of them.  So mostly, I’ve just stopped climbing the trees.

Sometimes I do though.  Last night, I did. I thought, I’m feeling  a bit better. And it’s not too cold out, it’s not raining.  My husband’s done so much for me the last month, I want to do something nice for him.  I’ll pick up food at the excellent middle eastern place that’s only four blocks from work.

We made plans, tentative based on how I was feeling.  But I was feeling ok.  So I went.  As I was ordering, I noticed that I couldn’t see the server’s face.  Shit.  Shit shit shit.  Surreptitiously, I covered first one eye, then the next.  Is it?  Yes, a little faceted sparkle in my lower right visual field of my right eye.  As I moved down the Subway-like food ordering line – giving instructions and answering questions “yes, tahini.  no hot sauce.  no tomato,” – it grew.  By the time I got to the register, the lateral border of the entire right visual field of my right eye was throbbing in a shimmering warning of the pain to come.  Thank god at least there is this count down.  It does help, well, sort of.  It’s hard to walk when your vision’s doing this.  And there’s the nausea.  And the talking.  I drop word endings or put the wrong ones on.  So my verbs come out all foreign caveman-like, “he drive now..then we walks later!”

I began texting my husband, which in case you haven’t guessed, is not easy when your vision is set on scramble. I guess it’s time to put in some short cut text for “I have a migraine and will be waiting inside.  Please call when you pull up”.  I don’t know how he figured out that what I typed was meant to be “washington street”.  I looked at it later and while it did start with “w”, it all went to shit after that.  My knight in deisel hybrid sped down the roads of Big Ass (historic) City, nearly knocking pedestrians out of cross walks and probably pissing off more than a few taxis, and called me to let me know he was there.  I was testy.  He seemed to want to talk me to him over the phone but I cut him off.  “Ok, so I have to hang up now,” I said in a tone that I hate “because I don’t actually have much vision in my right eye and I have to stand up, put on my coat, pick up my bag, and get the food and I can’t do all that and talk on the phone like this”.  I’m no good at being rescued.  So no more trees for a while for this cat.