discomfort, hurt, and harm

There is a difference.  I found the tilt table test uncomfortable, but it didn’t hurt or harm me.  I find that most IVs hurt, but usually don’t harm me.  But what about when you’re the one giving the care?  How do you know the difference between when you’ve done something that your patient finds uncomfortable, painful, or harmful?  Does your patient know?  I’m guessing that if you’re lucky, you have a very aware and articulate patient who can distinguish between unpleasant sensations vs. painful sensations and that you know enough as a clinician to be able to discern whether any of those sensations (or signs, like their blood pressure plummeting) means that you are now actually harming someone.

You don’t get all of those potential channels with an animal, and when you’re a pet owner who is trying to take care of your pet, you really are just left guessing based on how your pet is reacting.

I’ve been thinking about this a lot lately.  A good friend of mine has two sick, elderly kitties that she’s caring for at home.  Both get oral meds and special diets, but one also gets subcutaneous fluids which my friend has to administer at home.  Her cat grumbles throughout, but towards the end, according to my friend, the cat kicks it up a notch and my friend is horrified, worrying that what she’s doing to the cat has crossed from uncomfortable to painful or harmful.  And so starts the freaking out.

We’ve both been looking on line for information on how to do this procedure on a “difficult” cat.  Not unholy hell beast, not like my cat for example, but on a cat that is not as sedate and chill as all the cats that you find in majority (entirety?) of “how to” videos.  So many of the videos focus on things like how to deal with the infusion set or how to place the needle.  Admittedly, those are important factors but there are also the not trivial issues of “how to calm the cat”, “how to get the cat to sit still”, “how to gauge if your cat is just ‘grousing’ vs. telling you that something is wrong”.

I’m guessing that there aren’t videos on this because the people who make the videos choose the calm cats to (a) show how “easy” it can be and (b) to allow them to focus on the stuff like infusion set and needle placement.  I do wish someone would make some on the other issues though.  Anyone who has had to deliver medicine or care to a feline at home knows that response to your cat’s apparent distress will make a big difference in how successfully you can administer treatment.  My own cat, for example, acts like any constraint is killing her.  She will fight you wildly if you try to hold her down for more than a few seconds.  E.g., this morning we had a nice combing and catnip session, after which I forgot to clean the fuzz out of her comb.  I went back to my desk only to notice a few minute later that she was doing something with the comb…oh crap, she was eating the hairball.  I immediately start trying to startle her away from the comb by making sounds at her, only to realize that it’s too late for this approach when she looks up at me with wide, freaked out eyes and a huge hairball hanging out of her mouth.

I go to her, grab her, and hold her with my forearms while I try to pluck the hairball out of her mouth with my hands.  Not working because she’s writhing and bucking, windmilling her paws at my arms, and snapping her head up and away from my fingers.  “Need some help!” I call to Mr. Patient and present the wriggling cat, still wedged between my elbows to him as he comes over.  The cat greets him with more writhing, bucking, and snapping.  But she’s out of luck.  Mr. Patient grabs her face and picks the hairball off her lip.  I release the cat and she bolts from the room.

brown tabby cat sitting under a coffee table

Try grabbing me now!

She comes back a few minutes later, and this is how I know we have made some progress with this cat.  When we first got her, anything  that startled her was sufficiently traumatic that she would hide for hours after.  Now, she recovers faster.  Although note the pose in the picture to the left.  She’s back, but she’s barricaded herself under the coffeetable.

Admittedly, I would not have approached her like that to give her a medication.  Had I not made the alarming noises at the cat to start with, I might have had an extra second or two between grabbing her and her turning into the hellbeast. But those extra seconds wouldn’t have been worth much if the medication were anything that requires time to administer, like fluids.

For your amusement and edification, I’m sharing this gem I came across in researching how to give fluids to a difficult cat.

I also thought I’d share the following tip, although I haven’t heard back from my friend on whether it worked or not.  I started out by noting that it’s tough to know how to interpret your cat’s “feedback”, so toward that end, I recommended my friend try a “sham” infusion with her cat.  That is, set everything up as if she were going to inject and infuse, but don’t actually place the needle.  Just poke the cat, then keep her still for the time she’d usually have to stay still for the infusion.  If the cat’s grumbling pattern is low and grousy then kicking it up a notch toward the end, we have reasonable evidence to conclude that the escalation in vocalization is not pain or harm but the “discomfort” of running out of patience.

the usual

“we usually just get pizza” my boss told me of food for student workers.  We were discussing the transition of supervising student workers to me, temporarily, since our staff member who currently does this is leaving next week for another position.  I had told my boss that I wanted to have a meeting with the student workers to talk about the transition, scheduling needs, work priorities, and things like my sick policy and my health.  More on that later.

Back to food.  I am not one to think that all work events must have food, not anymore at least.  Too difficult to figure out what I’d eat, so it doesn’t come to mind as a meeting essential.  But my boss raised the idea and offered to spring for it.  Ok.  So food.  “Can I do something other than pizza?” I asked.  “Sure….”  Although it wasn’t on my mind consciously at that moment, I remembered later that one of our workers has Celiac Disease and needs gluten free.  Not only is this a known requirement, but it’s one that the school has screwed up on…hosting events that she’s required to attend without providing an option.  And then there’s her mom.  Her mom called our office one quiet summer day and we ended up talking for over an hour about a number of things, including how discouraged it made her daughter to go to school events with no option for food…while everyone else eats.  And lastly, there’s my own recent experience with being told I had to go to work events which were food-centric (“must attend all social events” said one work document addressed to me this past year) but where I could not eat anything.  It sucks and I’m damned if I’m going to pass that crappy non-option on to someone else.

And now I’m wondering…what to get for food.  Or just dispense with the food thing entirely.

It is nearly Halloween, so some kind of Halloween themed food or candy seems appropriate.  But  here’s the thing.  I am woefully ignorant of gluten free options.  Having determined through both empirical and lab test means that I am not gluten intolerant, and having not hosted in a looooong time, I really don’t give it much thought in my life.  And so I am asking you, dear reader, if you know of easy, tasty gluten free snacks or food, let me know!  I’m thinking I’d rather stay away from cooking.  I have nothing against the idea, but with people of this age, home cooked is not usually their favorite option.  Also, there are liability issues I think with bringing in your own, homemade food.  So I was thinking maybe Trader Joe’s or Whole Foods had some good gluten free baked goods or other goodies that I could pick up and bring in but again, given my ignorance, I wouldn’t know what’s good and what’s not in the panoply of pre-packaged gluten free options out there.

I welcome your ideas, recommendations, and suggestions to make this an inclusive (and tasty) event.

Now, as I said, the agenda is going to include my health.  This is because one of the student workers has made a bit of a habit of asking me stupid questions or making insensitive remarks to me that relate to my health.  Like asking me at top volume in an office full of people if I’m going to be out “again” next week.  When I tried to dodge his question, he kept pressing.  Finally, I asked him why exactly he wanted to know and he said he was just wondering if he was going to have to cover for me.  Me.  A full time professional staff member with very specialized skills.  Him, a relatively unskilled undergrad who spends a lot of work time watching TV shows on his mobile devices.  Yeah, you go on and just try to “cover” for me, boyo.  I’m more than a pulse in a chair.  Most recently, I came upon him watching TV at work and enlisted his assistance in clorox wiping down tables and desks.  It’s a busy time of year, we have students in and out all day.  Many of them are taking exams with us, and given the time of year, many of them are taking their exams sick – we had one who had to run out in the middle of a test to go puke (a stomach bug’s been going around up here).  And then there is the non-negligible number of students we serve who have chronic health problems that affect their immune systems.  I preface with all this to give you a sense of WHY I think that wiping down the surfaces with clorox wipes is a good idea.  So, we’re wiping.  I do a bunch of desks and keyboard/mouse sets and this student is slowly wiping a conference table. I finish up and say “here, I’ll help” (it’s a big table).  There are several piles of eraser debris and I hit them with the wipe and they scatter and smear across the table and onto my pants.  “Oh, gross, eraser crud” I say, wiping at the bits with my bare hand.  The student stops wiping and says “‘Gross?’  Are you a germ-phobe?”

Oh he got a bit of a talking to.  I mentioned this all to my boss at our meeting and said that I wanted to have a talk with him.  She said “Do it.  Set him straight.  And let him know that I want everything wiped down every day too…”

So the meeting’s agenda will include the topics of invisible disability in the work place, how not to make an insensitive idiot of yourself when dealing with a coworker with a disability, and what keeping a “safe, healthy, and welcoming” office means.  Can’t wait.  😉

What can you do?

I know some friends and family are hopelessly unhelpful when it comes to supporting someone with a chronic illness, but a great many more are just unaware of what to do.  If you’ve never been there, you don’t know.  And you probably don’t want to seem like you’re imposing, or insulting someone.  And sometimes, your offers are rebuffed for what seems like no good reason.  I’ve been on both sides of this and I know it can be tricky to navigate.  Here are some tips I want to pass on.

Keep in mind that help or support needs to be really and truly freely offered and given.  Take dinner.  Helpful if you know the person’s dietary restrictions and needs and can truly abide by them. Offer, kindly and without strings, to make and bring something that can be refrigerated or frozen.  What is less helpful is an offer to invite yourself over for dinner, or invite your loved one to dinner.  They may not be up for entertaining or being entertained, and if your offer comes with that string attached, they may refuse.

I’ve long wished for a way to give a service like PeaPod as a gift.  For readers outside of the area where you’d know what that is, it’s a service that lets you buy your groceries from a local supermarket online and then arrange to either pick them up bundled and paid for, or have them delivered.  My god I would love the latter.  Probably there is a way to do this, and if anyone figures it out, tell me.  I have a dear friend I’d love to do this for.  Not as a “I’m buying all your groceries forever” kind of gesture, but as a “hey, I set you up with a gift certificate that pays for 4 deliveries of your groceries so you don’t have to use up your resources staggering through the supermarket”.

Pet care.  Pets can end up being affected by their owners’ illnesses too.  I myself have forgone having a dog for years now because I know I do not have the energy that it requires to care for one.  Sometimes, you had the pets before you got so sick.  Sometimes, you need the pets for the love and comfort they provide but have a hard time managing to care for them when things get tough.  A good case in point:  I have a good friend who is going through a real upheaval right now.  She’s got a couple of chronic illnesses, endometriosis, migraines, been diagnosed with fibro and frequently struggles with the “fibro fog”, intense fatigue, and chronic pain.  Her husband lost his job about two months ago, just before she started a new full time one.  She had already been worried about whether she would be able to do the schedule this new job demanded, then about a month into it…a month of her husband having no luck looking for jobs locally, her husband got a job one state and over 5 hours away.  Money is incredibly tight and he has to take it.  So he’s moving to be near the job, and will come home on weekends to be with her.  But it leaves her all week with managing their household and her new, already incredibly challenging full time job alone.  Her household consists of three cats, one of whom is seriously ill and needs timed medication including subcutaneous fluid injections; and two energetic labs that they rescued about a year ago after her husband’s dog of many, many years died.  My friend needs to find someone who can help her with the meds and with doggie care during the day, her job keeps her out of the house for 10 hours a day three days a week and you cannot leave energetic dogs alone for that long without big behavior problems.   While she lives far away and I can’t offer to pet sit (and my own schedule and illness wouldn’t allow for it), I can offer to pay for a few days of doggie daycare to give her a break now and then.  It’s about the cost of a good mani-pedi.  So I’ll paint my own damned nails and toes once a month.

Laundry…especially if your loved one has to do laundry at a laundromat.  Offering to come help carry clothes in and out is a huge help, and you can schedule hangout time while you wait for the cycles to run.

Yardwork and snow removal.  When Mr. Patient is out of town, I have images of me wasting away in my home, snowed in.  There is no way in hell I can shovel.  If you have a friend with a chronic illness, offer to clear snow or pay a local kid to do it.  Yeah, your friend might have a capable spouse or family living with them, but if they are supportive, they’re already doing the grocery shopping and the laundry and the cooking dinner…you get the picture.

If you’re a really close friend or family member, you could offer to drive them to a doctor’s appointment now and then.  Doctors’ appointments can sometimes involve painful tests or procedures, and even when they don’t, they can be emotionally draining.  If I had a nickel for every time I have had to pull over and cry while driving myself to or from a doctor’s appointment, well I’d have enough for a cup of coffee at least.  So know that if you offer to drive, you are offering to be moral support too.

The time to pitch in is when you hear of a change.  Is your friend having surgery?  A flare up of symptoms?  Is your friend’s spouse going out of town?  This is when your friend will really need the extra help.  And it’s better than flowers or cards or fruit baskets.

Dr. Dumbass

Oh, someone wins for clueless doctor in the news.  This one may top my top ten.
Mid-South Doctor Gives “Ghetto Booty” Diagnosis
From WERG, Channel 3 Memphis
Posted on: 4:04 pm, July 12, 2013, by Candace McCowan, updated on: 06:49pm, July 13, 2013

A Mid-South woman has filed a complaint with the Tennessee Department of Health after she said the doctor she went to see for back pain gave her an insulting diagnosis.

“He said ‘I know what the problem is. It’s ghetto booty,’” said 55-year-old Terry Ragland about what she was told by Dr. Timothy Sweo in April.

…. “I think I blacked out after he said ghetto booty. I think my mind was just stuck on the phrase because I couldn’t believe he said that,” said Ragland.

The doctor’s response to the complaint: “I was trying to take a technical conversation regarding your lower back and make it less technical.” and “I think I do understand why her feelings were hurt but I don’t understand what’s offensive about it,” said Sweo.

The patient’s response to the doctor:

“It says to me that he doubts what type of intellect I have, how intelligent I am to be able to understand what he conveys to me in a medical term,” said Ragland.

As Dr. Evil would say, 

long lost people

Apologies for the long absence.  Tough times for me personally and up here in Big Northeastern City.  April is a cruel month.  I’ll post more about that later.

Last night, I got a call from a number I don’t know.  I recognized the area code as one from the woodsier part of Northeastern State but not the number.  Eh, that’s what voicemail’s for, I thought and let it go.

And then I got a text.  It was from one of my cousins and she mentioned that my mother (boo, hiss) had said she should call me about some medical stuff.  I had two sets of cousins for most of my childhood.  I say “most” because my mother was adopted and found her birthmother and a whole set of half sisters with kids when I was in my early teens.  So that opened up another bunch of cousins.  All boys, which was funny since the two sets I’d had up til then had been all girls.  Three girls who were my dad’s brother’s kids (although my dad came from a pretty large family, all my dad’s sisters had endometriosis back when that meant unaddressable infertility) and three girls who were my mother’s brother’s kids.  My mother and her brother were both adopted.  Remember that, it’s important.

The one who reached out to me was my uncle’s second child.  Another middle kid.  I have the following associations with her:

  • She was always very pretty, in a fairy-like way.  Gorgeous long blond hair on top of the delicate features she and her sister shared.  
  • Young.  Always so young.  All of our cousins were younger than my little brother, which meant that the eldest of the cousin sets was still my junior by some years.  The consequences of this are that although I felt an affinity for the middle daughters in both sets, there was a bit of a divide since in childhood social spheres, age does make a difference in peer relation. 
  • Peppy.  Not crazed with energy, but peppy.  
  • Easily injured.  It didn’t keep her down, but she did fall a lot.  

Seeing her text, I immediately called her back.  yeah, it was late and yeah I’m gonna pay for that today but I had been thinking of her and her family so much over the last few months.  I think it started around christmas time and has just been picking up steam.  Not a week has gone by where I don’t think of them.  We weren’t super close.  My parents were just kind of isolated and aloof so this meant we didn’t get really close with any extended family.  So I’m not sure why this branch of my tiny family tree was on my mind so much but it was.  And when I saw her text, I thought “ok if this doesn’t mean we need to connect, I don’t know what does.”  The first thing she said was that I sounded exactly the same.  It’s been almost 20 years since I last saw her, and that was at my first wedding.  I’d be surprised if I said more than a paragraph to her during that since I was stressed and running pillar to post and she was sick and down for the count some.

The next thing she said was “so I hear you’re a zebra too.”

What is up?  Health wise, I asked.  Turns out that my cousin has very likely got EDS, definitely has POTS, heavy on the “T”.  And endometriosis.  The list goes on but I don’t want to put all of her health info up here like it’s mine.  This is an anonymous blog but still, not my right.  Suffice it to say, we have a hell of a lot of overlap in clinical presentation.  Although she’s cold intolerant

I was staggered.  At one point, she said “I feel like I’m talking to myself.”  And I knew exactly what she meant.  “Are you sure weren’t not related by blood?”  Pretty sure.  But boy that is some strangeness.  “WTF was in the water?  Doesn’t it make you wonder if there was something in our environment?” I asked.  But it’s not like we spent a ton of time together or at each other’s houses.  We lived rather far apart too.  We were on city water, she was probably on well water given the rather rural town where her family lived.

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.

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”.

standing by

I wrote a little while ago about being involved in a medical emergency at work (the link to that post is here).  I wondered what to call this social phenomenon of people assuming someone else will act and so failing to do what is needed, what is practically and morally required.  Turns out there is a term of it, the bystander effect.  And it’s in the news today, in a medical context.  A news story has been picked up, based on a New England Journal of Medicine article, about doctors at Yale-New Haven Hospital failing to treat an acutely ill patient who, no surprise, got sicker.   Too many doctors, specifically too many specialist groups, and no one coordinating the care.  No one making the calls.  No one designated, and therefore no one taking on, the role of pulling it all together and actually taking care of the patient.  Oh they ran tests, and apparently each team spent quite a bit of time talking about the patient.  But, according to the news story, no one took the needed steps to treat the man.  What I found particularly interesting was this part:  “Our inability to easily name his disease process quickly created ambiguity about ‘ownership’ of the patient,’‘ the authors said.

Let that sink in for a moment.  To me, this article could have been titled “why patients should care about having a diagnosis” or “what’s in a name?

I am going to ask hubby to get me access to the NEJM article and then I am going to make copies of it for the doctors I see who complain about patients who want a name for an illness.

Two great points in one article.  Let’s hope the medical community takes notice.


Link to the original article in NEJM, you need a subscription to access it.

accentuate the positive

I recently “unliked” an EDS group on Facebook.  I hadn’t been active in it, just a reader.  But then some drama broke out and I found myself starting to seethe reading the comments people posted…and I decided to just drop it.  I have no idea what kicked off the drama, from what it seems, someone must have written something nasty to the moderator/administrator.  And then all hell broke loose.  What got me riled was reading “supportive” comments of people which went something like this:  “I hate all the whiners who let the disease take over their life…”  Basically, multiple slams on people who are not chipper and positive and “can do” in the face of a debilitating illness.

I have no room for that in my life.

Everyone has bad days.  People with chronic, life stealing illnesses are going to have a lot of them.  And a lot of “negativity”.  I guess this is a sore point for me because I find that the “buck up and shut up” sort of attitude is so prevalent in life and serves to perpetuate the belief that if you are not up and running marathons, your “rotten” attitude is responsible for your poor physical state.  You get this from so many sources in your life, when this attitude is embraced by members of a “support” group, I run in the other direction.

Old friends

This is perhaps the busiest christmas season I’ve had in a long time.  Party at my brother’s work (BATH research group), party at work, party last night, and party tonight at my boss’s house.  The first one didn’t go so well.  It was smack in the middle of the week and after a long day of work.  I’d already been sick on the weekend with a god awful round of stomach cramps.  And I forgot to premedicate prior to the party, so I had to leave the party early and get sick at home.  😦

I took it easier on Thursday, and I took Friday off/worked from home – which was great since Friday night was the getting together with old friends night.  I didn’t feel good all day, and gave my husband the head’s up that it would probably be a “hi/bye” kind of event.  I managed to last about 2 hours before I was swaying and dealing less than gracefully with the whole autonomic screwery.  Some highlights from last night included the bar tender telling me that my drink order (ginger ale) was “boring”.  Well fuck you too missy.  Enjoy that nickel tip.  Explaining to my friends (thankfully, a small group at that point) that I don’t drink because alcohol and me don’t agree.  They were gracious about it, only one follow up question and it seemed to be asked out of genuine concern and not some kind of puerile interrogation type of inquiry.

Then there were references to my not driving when we all knew each other in my late teens and early twenties.  “I wasn’t allowed to get a driver’s license until I could go 6 months without passing out – I passed out a lot” I explained.  “What?  You did?  When?”  a group asked.  “Jesus, all the time.  The time at lunch in 11th grade, the time I passed out on the field trip to Paul Revere’s house, the time I passed out on the plane trip to Italy….”  “What was wrong?”  I explained that I was hypoglycemic and didn’t know it.  I think I did a decent job of not over explaining or offering too much gory, eye-roll inducing detail but still managing to convey the important bits of info (i.e. “why I always mooched rides off everyone”).

And then there was the talk about taking public transit and walking around in the city, and how people get in your way and crowd you, even when you walk with a cane.  “You have a cane?” one person asked with some evident shock.  “yeah, I only use it sometimes” “why?”  “I have a connective tissue thing, it’s painful.  I’ve always been very flexible, but before I could bend and pop things out of joint and it didn’t hurt.  Now, it does.”  Head nods all around.  I’m one of the younger in this set of people, and I’m 41.  Everyone is becoming familiar with the rotten tricks their bodies can play on them.

I think it helps that one of the old friends who has kids has a kid who was born with a heart defect.  The kid is doing great, and is now verging on adolescence.  This friend is not a stranger to hospitals, his son has had multiple surgeries and still needs to go in routinely for moderately invasive check ups.  People with that kind of experience do not tend to look at you like a freak for having medical problems.  It’s a very welcome change from how my disclosures are sometimes greeted.  I think it helps that they knew me when I was young and spry and they knew that although I never was known for my amazing feats of strength, I was definitely not a shrinking violet who needed to be treated with kid gloves.  Miles long walks through the city, running and jumping around on the beach wall and climbing lifeguard chairs at night, dancing in mosh pits and spending the night hanging out on the Boston Common because we missed the last train out.  Actually now that I think of it, one of them was with me when I fell once.  We’d been out at a dance, his car had been towed, we ended up in a bad part of town getting it out, and at one point I had to haul ass across a busy street in my way too high heels. I wiped out and came down on my knee, hard, but other than some serious swearing, I got up and soldiered on.  I think the fall and post fall experience made it clear that I’m not a wimp.  He tried to help me scrub the glass and gravel out of it later at his apartment but he was being too delicate.  “Give me that” I said and took the washcoth, then proceeded to scrub with a vigor that made him turn a rather green shade of pale.  Contrast that to the people who only know me now, as a “sick person”.  The judgment I get from them is pretty severe.  Not all of them, but for example, at my last job I was treated to frequent conversations about how to will one’s way out of being sick, or to the 100 stupid questions about what was wrong with me.

So overall, despite it being a short event, it was nice to see folks.  A few of them live quite near me it turns out, and we’re planning to get together again a dive bar in my old neighborhood (they live in the part of town where I grew up).  There’s a comfort to staying close to home, to familiar places.  If I get in trouble, health-wise, I know where to go, I know the taxi phone numbers, I know what hospitals are good and what aren’t.  I know how to drive home even feeling bad, without getting turned around or lost.  On my way out last night, one of them said “Ok, we’ll definitely do a bar night!” and I said “Absolutely, but earlier…I can hang out longer if it doesn’t start at 8:00 PM”  “Not a problem!” he said – and boy doesn’t that make a difference.