wide the hell awake at 3:15 AM

You know when your body decides to mess with you in the middle of the night?  Like when it gets its little delicate internal clock screwed up and decides that 3:15 AM is just as good as 6:15 AM?  Yeah.  I hate that.

I think my being wide the hell awake at 3:15 AM has something to do with the dreams of violence I was having just before waking up.  Hard to work up a proper sleepy beddy-bye feeling after you wake up in a cold sweat (hey sweat!  I remember you!) after dreaming that you were fighting for your life.

And as I type that, I immediately know where the bad dreams came from.  Seriously, it had been a mystery to me until just now.  Sometimes I’m pretty thick.

Can my body be likened to a homicidal maniac waving a gun around in a home invasion?  Can how I feel while on this healthcare joy-ride from hell be metaphorically similar to how you might imagine you’d feel trying to protect yourself and someone or something precious but exceptionally vulnerable from said maniac?  You bet.  Is that what I dreamt about?  Indeed it is.  At least it was an anonymous gunman (woman) – so much tougher to wake from those dreams where it is my family.  So much more anger on top of the feeling of struggle and adrenaline and need.

But that said, there’s been a strange feeling in the air the last week in town.  Out on the street. Lots of violence in the news.  I’m sure that’s not helping.  That and reading involved papers about acetylcholine receptor antibodies and their constant mentions of paraneoplastic syndrome before bed.  Gotta stop that.

The struggle to see what I’m calling a “very special specialist” continues.  This all not to find out a treatment that works or anything but to minimally rule out an autoimmune response to cancer as the reason my already largely dysfunctional autonomic nervous system decided to just check the hell out sometime in early March.  Oh boy do I fit the bill for autoimmunity here.  Heralding infection?  Yep.  At each stage of this now nearly 10 year long progression, I have had an infection or big body stressing event.  Surgery and Lyme disease in 2002 – OI started getting out of control, lots of unexplained eye pain.  Bad bad bad case of the flu in 2004 – GI symptoms surged and I lost about 35 lbs.  Bad bad bad case of the flu in February of 2013 – gastroparesis and hypohydrisos (I’m being charitable here and not saying anhidrosis since I do still sweat when I’m about to pass out, and I am still waking up in a cold sweat at 3:00 AM, but put me in a 95 degree kitchen cooking soup and I’m dry as a bone).

I currently have calls in and referral processes going at a few very special specialists’ offices.

One is a turd.  No, really.  I’m told that he’s a really good diagnostician, the Neuro-House at one of the local BATHs, but the same colleagues who say this also say repeatedly that he has a terrible bedside manner.  I’d like take a moment to propose that this term “bedside manner” be abolished since it is code for basic human behaviors like empathy and the ability to recognize others as humans instead of objects.  What is euphemistically referred as a “lack of bedside manner” would be, in a patient, considered a pathological psychological state akin to high functioning autism or possibly psychopathic tendency.  I’m stating it boldly for some humor’s sake, but I am not joking about the sentiment that underlies this.  These people are not just kinda bad at an ancillary part of what they do.  They are flat out bonkers or massively maladjusted and god I wish their colleagues would call them on it rather than bury that turd in the box of “bedside manner”.

The other is, well I haven’t gotten any info on his “bedside manner” but I have been told by two very different sources that he is very good.  Ok.  My own observations of his lab/clinic is that he is one of those who straddles the line of researcher and clinician.  Can be good.  Can be bad.  And he’s damned hard to get an appointment with.  As luck would have it, the turd is a bit easier.  A clearer clinical schedule for the psychopath.  Go figure.

I forgot that there is another who I had asked a new friend about…he’s got more sensory/motor neuropathy stuff going on and sees someone at the Big Granddaddy of all BATHS who he likes a lot.  I wrote earlier about calling her office, got a bit of a rebuffing…letter from pope, etc.  She and that group are not out of the running, but I have better “ins” at the other two (turd and research guy) so I’m more aggressively pursuing them right now.  We’ll see which lucky bachelor it ends up being.

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Family time

My sister’s birthday was yesterday.  Although we haven’t been speaking since 2011, her birthday is not meaningless for me.  We had been very close all of my life, save for the periodic episodes of her deciding not to talk to me.  Those started after I got sick(er) and increased in frequency as the years went by.  The first one was in 2005, when things really took a turn for me.  It was a tough year, marked by a bad break up of a long  term relationship (in part because the guy couldn’t handle being yoked to a sicky), a transformation in my migraines to daily headaches, the addition of vertigo, massive weight loss from the then recent state change in my gut, and the onset of debilitating hip pain which now just comes and goes.

The next time my sister stopped talking to me was when I was un/underemployed after leaving grad school due to the inability to manage my health without academic accommodations.  And then most recently, this.  This is the longest period so far, coming up on 2 years.  We’ve had one short facebook chat, around this time last year, when I stumbled upon a news story in the local Big Northeastern City Big Newspaper where our mother was interviewed about her having come to the catholic faith late in her life.  The writer of this piece wanted to show how a parish was still growing despite the sexual abuse scandal that has been sweeping the catholic church for years now.  I don’t know if my mother was put forward by the parish leadership or if she self elected to tell “her story” but somehow she ended up as one of three people interviewed for it.  Her “story” was that she felt bad seeing the effects of the abuse and identified with the church leadership because there had been abuse in HER family and she didn’t know about it until too late and now, like the catholic church, had to deal with the mess.

Yes, she did.  My mother did liken herself to the pope.  And she also did completely and so publicly revise my family’s history – most notably with regards to her knowledge and the timing of that knowledge.  She knew plenty early to do something to stop it from continuing, and she didn’t.  The person who told her was my sister, as a very young child.  My mother knew, and she did not take steps to remove the abuser from our home or to protect us from him.  And so the abuse continued for years.

I wrote a scathing letter to the reporter.  Because she didn’t disclose the relation of those “abused” in my mother’s story, I don’t think the reporter technically violated privacy laws.  However, she acted unethically and I was sure to let her know exactly what I thought of that.  Before sending in this letter, because it disclosed some details of the abuse and my family’s history, I wrote to my sister and told my little brother.  See, that’s what you’re supposed to do before you start airing family’s dirty laundry in public.  They were both ok with what I wrote and with my sending it in.  But aside from that interaction, I have not had any conversations with, emails between, or sightings of my sister since late Fall 2011.

photo of boston from beach

4th of July, from the beach in my hometown.

This time, we stopped talking with a bang instead of the usual inscrutable random reason, like “you rolled your eyes when I said X during conversation Y at Christmas!” (2005).   This time, I blew the hell up.  It was related to health stuff.  I’d spent the day in the hospital, a day that was supposed to be a vacation day that I was going to spend with her.  The day after Halloween, and I had been looking forward to it for months.  But I’d had chest pain for days, that just kept getting worse.  Called my doc  after the weekend was over and was told “go to the ER!”  I hate that.  I won’t do that again, but I did it that time.  My sister took me, didn’t have to but she offered.  But I could tell she didn’t want to be there, stuck in the ER with me appearing not to be ill except for occasionally flinching when the pain gripped my chest.  So I told her if she wanted to go she could.  She did.  And fucked off for a while.  When time came to pick me up, I called and got no answer a few times.  Finally I got her, she was doing dishes.  She picked me up and instead of going straight home where I could rest (because I got speed and steroids in the ER and felt like shit), we had to stop at her house and finish doing whatever she was doing….her house was warm.  Bright.  Difficult.  Then to my place, where she did her laundry (I offered, but I had figured she’d maybe at least start it during the hours I spent in the ER).  And then the family bullshit.  She hadn’t been talking to my brother for a while at that point.  They’d had a fight.  She was supposed to see him that night for the first time in a while.  And she wanted to strategize with me I guess.  Talk about it.  Analyze it.  In the weeks before this planned event, she had tried to engage me in similar discussions.  I had told her that I did not want to be in the middle of her and my brother again.  That I hoped things worked out and they could reconnect but that I was not going to mediate.  I told my brother the same thing.

That night, in the course of this discussion, I tried saying this again.  And god I was so tired and so sad about my day being blown to shit.  And about not being able to do the things I wanted to.  My guard was down and my emotional resources were just gone.  And she decided that my brother and I had been conspiring against her, money was involved (tangentially, I thought but not for her).  She started going into her seething rage mode, tight mouthed and snippy.  The one that I, by that point, knew marked the start of a several month’s silence on her part.  I was panicky about this, those “no talking” times hurt, as I am pretty sure they were designed to do.  Then I got pissed off.  How dare she drop this in my lap, and then especially.  Why did it always have to be all about her and her tragic life?  And I got snappy with her.  She was going to leave in a huff, as she does before not talking to me for months, and seeing that this was where things seemed to be going, it was like a spark for what – that day – was a very short fuse.  If she’s going to act like my having a bad reaction to her bullshit is a monstrosity, then why do I hold back?  Why hide the rage and frustration that I feel about my health and my life getting so small, why hide how much it invalidates and demoralizes me when she sits there telling me all the things I should do, or could do (if only I’d stop playing sick apparently)….why hide how angry it makes me when an occasional failure to treat her with the delicate kid gloves she requires results in earning her apparent spite and condemnation? And so this time, I really blew up.  And while I’ve missed my relationship with her, I have not missed the relationship we had had for the last few years.  What I missed was one that had been gone for a while.

In the very early morning of her birthday, I woke up screaming.  That was 1:00 AM July 4, and my throat still hurts.  It was a lot of screaming.  It was a bad dream.  It involved illness, my mother, my sister, so much pain – both physical and emotional.  At the end of this horrible dream, I was being held down and hurt horribly, and woke up screaming.  Woke up my husband, who – god bless him – tried to calm me by holding me tight.  Not a good idea.  It took at least a half hour for me to stop crying after finally being able to articulate that he needed to let go.  Crying partly about becoming combative with him in my confusion, partly from the remnants of rage and horror, and partly from the continuing physical pain which rapidly became very real when my too tight muscles and rigid tendons were locked in his arms.  We finally got up and came downstairs, smoked, and recovered.  I told him about the dream and I said I was really sorry for throwing elbows while he was trying to comfort me.  I explained that if I need to be held after  a dream like that (they happen about 2x a year, more during stressy periods or holidays and family birthdays), I will tell him.  He was deeply apologetic for holding me like that, he said he had only wanted to comfort me and stop me from getting hurt – which I really do get.  When someone who dislocates is thrashing violently (not to mention screaming like they are being stabbed), it makes sense to want to hold them.  I told my husband that it was a good thing my parents lived far enough away to be inconvenient for me to drive over there and just start slapping.  If someone’s going to get elbowed in the face because I continue to suffer the ill effects of a broken development, it should be them.

In the late morning of the 4th, my brother texted me that my uncle died the night before.  This is not a man I knew well.  This is the second husband of a once favorite aunt.  Favorite of us kids, not of me specifically – she is my brother’s godmother and while she and her first husband made us all very welcome in their home, they had a special bond with my little brother.  Went spent a lot of holidays with her and her first husband.  He was a kind man who, even after getting sick with liver cancer, would try to be as fun as he could for quite some time before the depression and physical illness robbed him of that.  They had been very much in love and he had died young and rather suddenly.  Lost weight, got jaundice, got diagnosed, died all in a few months.  It took my aunt a long time to recover some footing from this.  Finally, at quite a later point in life, she met a man who she adored.  They quickly married.  I met him with her at another uncle’s funeral in 2007.  She seemed so happy, despite the sad occasion, when she spoke of this man and looked at him.  I was happy for her. A few years later, he had a stroke.  Then another.  A pretty bad one.  The next time I met him, last year, he had significant aphasia.  He could speak but it was with significant effort.  I found out from little brother that a few months ago, he had deteriorated further, another stroke, and had been transferred to hospice/rehab.  Basically, it was rehab but the staff and my aunt knew that it was really just comfort measures and palliative care.

The practical upshot of this is that I will be seeing the family quite soon for the memorial services.  What a week to have to see them.

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.

What’s in your gut?

Icky but cool – cool from the perspective of open source data.  I don’t think I’ll be participating since god knows my gut gets enough study as it is, but I thought I’d share this because I find the research model extremely interesting.  I’m also certain that my primary care is going to flip over this.

From the project site:

http://www.indiegogo.com/americangut

The Human Microbiome Project and other microbiome projects worldwide have laid an important foundation for understanding the trillions of microbes that inhabits each of our bodies. However, opportunities for the public to get involved in such research has been limited. Now, American Gut gives you an opportunity to participate and to compare the microbes in your gut to those in the guts of thousands of other people in the US and elsewhere. American Gut is a project built on open-source, open-access principles. Our data are for the good of understanding and will be shared both with participants and with other scientists. Our experience has been that our best ideas and work come when we involve people in as many steps of our work as possible, be they scientists, educators, roofers, ultra-marathon runners or corporate leaders. Everyone has something to offer, whether their sample, their hypotheses, their analyses or their dog (yes, their dog, we will get back to that). The more we can understand the complex microbial ecosystems on which we depend, the more everyone will benefit.

  • 10,000 people needed – join us!
  • Our Team: 30 scientists with over 800 publications
  • See how your microbiome compares to our community and learn how you might achieve an optimal or more healthy gut
  • we start mailing out the PERKs (kits) in January

What is American Gut?
You’ve probably heard by now that the trillions of microbes living on and in our bodies are changing both the way we think about health and disease and even how we define Self. Ever wonder what’s in your gut? Ever wonder how your diet might shift your gut microbes (for better or worse), or how simple lifestyle decisions may have a dramatic impact on your gut and overall health? Ever wonder which microbes on your husband sometimes make him smell funny?

The gut is our main focus, but it is also interesting to look at oral, skin and even vaginal communities for several reasons. It might be possible to develop biomarkers–canaries in our corporeal coal mines that let us predict aspects of your gut health based on a spit sample or a reading (swabbing) of your palm. We know, for example, that arterial plaque shares microbes with the mouth but not with the gut. Could we use plaque samples to predict features of our hearts? Maybe.

“latch on to”

Every now and then I do a search for “post lyme (disease) syndrome” to see if any new research results or information has been found.  Sometimes I find something interesting and useful, like this, Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms.  Often, it’s just rehashings of the “chronic lyme” controversy, like this Lyme Disease Complicates Doctor-Patient Relationship.  Despite its promising title, the story is actually less about the complications of the doctor/patient relationship for people who experience symptoms after standard treatment and more about a particular infectious disease doctor’s take on non-standard treatment protocols (the continuing use of antibiotics), and a caution that patients “latch on to” information on the internet to their detriment.

I found the doctor’s portrayal of how patients end up thinking that they have lyme or continuing lyme rather insulting.  It’s a significantly oversimplified one size fits all approach that paints everyone who wonders if they have reasons to consider lyme, treatment refractory lyme, undiagnosed lyme, post lyme, or “chronic lyme” as a boob who believes the first thing they read on a forum thread.  He also completely skips over the part that many of us, with or without a history of a lyme diagnosis, experience:  the doctors who are dismissive, invalidating of our symptoms and the impact they have on our lives, and who sometimes are just horribly uninformed.  That does happen, and when it does, it makes it a lot harder for a patient to be guided by that doctor.  I believe it has a cumulative effect as well, depending on how bad or how many bad interactions like this a patient has with health care providers, it can create a sense of deep distrust.  All of this is skipped over in the article, not even acknowledged as an afterthought or footnote.

I blame the interviewer to some degree – if this was meant to be about how symptoms of unclear etiology get in the way of doctor/patient relationships, then he did a poor job in guiding the doctor to discuss that.  I can’t help thinking maybe it wasn’t meant to be this but this was the label the editors slapped on the interview after listening to the doctor go on about how stupid and/or gullible patients are.

aspiring model

Anyone else read about Brittany Wenger, the 17 year old who won the Google Science Fair grand prize?  Her prize winning project is a neural network app that analyzes breast lump fine needle aspirate to diagnose breast cancer.  From the summary on her project blog:

The successfully implemented custom network is tested with 6,800 trials.  To assure maximum training, each sample is run through ten trials evaluated by different networks trained against all other samples.  The custom neural network achieved predictive success of 97.4% with 99.1% sensitivity to malignancy – substantially better than the evaluated commercial products.  Out of the commercial products, two experienced consistent success while the third experienced erratic success. The sensitivity to malignancy for the custom network was 5% higher than the best commercial network’s sensitivity. This experiment demonstrates modern neural networks can handle outliers and work with unmodified datasets to identify patterns. In addition, when all data is used for training, the custom network achieves 100% success with only 4 inconclusive samples, proving the network is more effective with more samples.

Aside from being thrilled that a 17 year old girl has kicked some serious ass and represented for all us “girls” in the too long male dominated field of science, I am quite literally tearing up thinking “Yes, this is exactly the sort of approach that needs to be developed for medical diagnostics!”  We have so many streams of data, so many bits of information, and too often each bit is considered separately, sometimes even by separate doctors.  Models which can include these multiple parameters, which do not discard “noise” but which include outliers are desperately needed.  They are more powerful and sensitive than how we currently do things, and it makes sense to develop and use them.  I’m excited to see this innovation.  Go Brittany!

Reading, writing, and obfuscation

POP of Medical Mojave recently posted a link about a student in Florida who was denied treatment during an asthma attack at school.  I’ve read over a few news stories about it and it seems the school’s defense of first confiscating then denying access to the student’s inhaler was that the student’s parents had not signed a form.  One of the articles I read reported that “The school district said they encourage all parents to make sure they file the proper paperwork each year.” Ok, so I took a little trip to the school district’s website and thought “let’s say I’m a parent with a student who has a medical condition requiring medication” and looked to see if I could locate the appropriate paperwork and the policy for medication in school.  It turns out you can do it but not without a lot of digging.  First, you have to go to the Parents and Students tab

screen shot of blackboard based page at http://blackboard.volusia.k12.fl.us/webapps/portal/frameset.jsp?tab_tab_group_id=_103_1

Parents & Students tab

But it’s not under the heading of “Parent Links” which advertises policies and procedures and has various documents associated with it, like this one, titled “parent guide 11-12”, or the various documents linked under “Back to school guide“.  Not in the District Wellness Plan.  Silly me, I always forget that “wellness” is only for healthy people, not for us rejects with chronic medical problems.

Once I clicked on back to school guide, I was taken to a page with a new set of sidebar links and one of them says “forms”, maybe it’s there!

Screenshot of blackboard based page at http://blackboard.volusia.k12.fl.us/webapps/blackboard/content/listContent.jsp?course_id=_795_1&content_id=_48162_1&mode=reset&courseTocLabel=Forms

Forms link

Oh, no.  It’s not. So back to the Parents and Students main page I go.  I scroll down…Under the “My Student” header, I see “Student Health Services“.  Surely this will get me to a place where the school district has made clear or at least mentioned their policy and has posted obvious links to the yearly forms that parents need to complete, sign, and place on their child’s file at school.  Well, immediately below is another screenshot of that page, and while that very important information is not directly on this main Student health services page, I am happy to say that any parent of a student needing medication is now only one click away from the policy* and two clicks from that all important form**!  Let’s see how long it takes you to find it, starting from the Student Health Services page itself.

Screenshot of blackboard based content from http://blackboard.volusia.k12.fl.us/webapps/portal/frameset.jsp?tab_tab_group_id=_103_1

Student Health Services

If you give up, here are the links and how one would get to them:

  • *Administration of Medication, on side bar.  Oh, on the page that describes their policy, there is no link to the form.  If you want the form, you have to…
  • ** click on “Health Related Forms” in the side bar, then click on the link to the “Authorization to Administer Medication” form  and congratulations, you have found it.  Now you just need to fill it out, have the doctor fill it out, and return it.  Once, right?  No?  Yearly?  That’s what the news stories said, but you know, I just don’t see that information on this form, so it must say that over on the “Administration of Medication” policy page.  Um….although I zoomed in to blow up the itsy bitsy font they used for the policy, I do not see that it actually spells that out.

Too much?  Well, I’ve got some time on my hands.  My husband is off visiting relatives in NY and the temperature is moving into levels that will make me sick if I try to go out and do much of anything.  And I guess the story of someone in distress while the people who are supposed to help – whose job it is to help – watch passively after having taken active steps to put the person in distress in the first place is one that resonates with me on a lot of levels.

As a child, I passed out on occasion.  Several of those occasions were at school.   All of those times involved me recognizing that something was seriously wrong with my body and alerting a school official who ignored it, dismissed it, encouraged me to do the same, and failed to respond appropriately during or after the episode.  All of them involved harm and significant risk of harm to me.

  • Once in third grade, I was 8.  My clearest memory of it is of the corridor to the nurse’s office.  First the abrupt sensation of the hard floor on my face – why am I pressing my face against the wall?  Resolving the orientation of myself in the cool, dark hallway by recognizing the coat hooks along the walls, I realized that I was lying on the floor.  I had passed out alone and woke up alone.  Being a strangely self possessed little person, I resumed walking to the nurse’s office.  I found it locked with the lights out, so being a typical child in terms of  my ability to develop contingency strategies for unexpected situations, I turned around and made my way back to the classroom.  To my knowledge, my parents weren’t called.  I was not given any medical attention.
  • I passed out again on a field trip in 6th grade – 11 years old – in the back of the tight, low ceilinged colonial era bedroom full of my peers and woke up to the empty room, lying on the colonial era bed behind the velvet ropes.  No parents, no calls, no medical attention.
  • There were two more…the last one involved my being dragged by my arms to the nurse’s office by the guidance councilor who had just moments before repeatedly denied me permission to leave lunch and go to the nurse.  I probably would have passed out anyhow.  Our school nurse was good though, she might have figured out what was up and been able to reverse it if I’d been able to get to her in time (a glass of juice would have been sufficient). I had about a 10 minute lead in terms of symptoms.  But regardless, I would at least have been in her office and, hopefully, laying down had the school official listened to and respected my judgement about my physical needs.

I used to think of these episodes as my problem and I still do outside of an institutional context.  That people in the restaurant where I passed out in 1997 didn’t know how to check my pulse or to put my head down and my legs up was not great but also, it wasn’t their responsibility either to ensure that the environment was controlled to avoid triggers for passing out (or, say, to avoid triggers for an asthma attack), or to assist me when I did pass out.  But in many institutional contexts, it is different and I believe there is shared accountability.  E.g., I can choose not to shop in an overheated store or not to eat in a restaurant that makes me wait so long for service that I go into a hypoglycemic stupor.  But I cannot choose not to work.  I cannot choose not to go to school if I’m a 17 year old who hasn’t graduated yet.  In those contexts, there must be mechanisms to accommodate the legitimate orgnanism based needs which are conveyed to the people who regulate and administer the institution-based factors like when and where people can eat, whether they can carry or have access to medically necessary medications or interventions. And there must be mechanisms which allow for  appropriately addressing the results of failures to accommodate.

We inhabit these glorious feats of complex engineering.  They share many common features among them, allowing us to be grouped into sets like species, sex, race, age.  Classifications like runner, swimmer, diabetic, and dancer, but which also sometimes put us into small sets like eight year olds with undiagnosed hypoglycemia and orthostatic intolernace or 22 year olds with dyslexia, OCD, and a congenital heart defect.  Or not so small but still marginalized sets like 17 year old boys with asthma.  Because of the many embedded levels of variety, a good number of the systems and contexts in which we must operate cannot practically be organized in a way that will always allow each of us to function to our best ability at all times.  But I think it is reasonable to expect a minimum of two things of those systems. One is that they will not be organized in a way that causes harm, maximizes risk of harm, or imposes unnecessary burdens on people who try to mitigate any negative effects their bodies experience in some less than ideal environments.  The other is that they should be flexible.  A system that is inflexible will most likely over-rely on a template, e.g. the template student with no medical conditions, and this creates a host of problems including the seemingly absurd but true scenario of administrators allowing a student to enter into a respiratory crisis rather than break a rule or violate a procedure that the parent and student are literally begging them to do.

The school in Florida certainly failed on both accounts.  The website alone is evidence of their failure:  the information is buried and the content, once you find it, is impoverished.  It’s clear that students with medical conditions were not considered part of the standard (and probably largely unexamined) construct of “student” when this site was laid out.  They were added on after the fact, a little “oh, we should post that online….let’s see, where to put it…” addendum.  Moreover, the process described for obtaining access to medication while at school is burdensome – a note from your doctor every year for a chronic lifelong condition?  really? When those factors combine with environmental triggers that are hard to control in a school (e.g., dust, mold, open windows instead of central air, chemical fumes) the  result is an an environment where the non-standard, template defying student is at risk of harm.  And because there is no systemic flexibility, there are no mechanisms available or accessible which will allow any of the participants to mitigate that harm:  not the student, who is treated as all students tend to be treated – with little to no respect for even age appropriate individual awareness, self-sovereignty (of body), dignity, judgement; not the nurse, whose motivators and thought process we can only wonder about but which must have included a strong belief that she had to follow the rules above all else; not the school administrator who apparently came on the scene and also failed to call 911, to authorize dispensing the medication, or to take steps to not exacerbate the student’s feelings of abandonment and helplessness (they locked him in a room).

I’ll buy that you can’t always arrange everything so it’s ideal, or immediately accessible, for every type of person, every type of “disability” if you want to call it that.  I’ll even buy that an institution needs to have mechanisms in place like the permission for medication.  But what I don’t buy is that it has to be so burdensome for the individuals with these needs, that the class of “student with medical needs” is so narrow and small that the school district can justify burying the very important information that is necessary for these students to enjoy the benefits of an education without risking life and health, and that the system has to be so god damned rigid that the administrators cannot formulate or execute prudent decisions in an evolving and increasingly urgent situation.  It is not that rare for a student to have medical needs, and even students who don’t have chronic conditions could develop a need.  With a system this rigid, I have to wonder how those are handled.  Is it really still as bad as it was when I was in school 20 to 30 years ago?  I suppose all the parents of students in this district should take a moment to track down and fill out the  “Special Medical Procedures” form just in case their child experiences an acute medical situation, because otherwise the school isn’t going to be able to do anything better than lock the kid in a room and stand around reassuring themselves that they are just following the rules.

Oh, one last thing I wanted to add.  Just in case anyone local to this school district wants to drop in to share their thoughts on institutional flexibility and inclusion for students with medical conditions:
NEXT SCHOOL BOARD MEETING
Regular Meeting: Tuesday, June 5, 4 p.m., DeLand Administrative Complex, 200 N. Clara Avenue, DeLand
During school board meetings and workshops, a live audio broadcast can be accessed from the School District of Volusia County’s website at http://myvolusiaschools.org.

très bizarre

Pea sprout plucked from Cape man’s lung
August 12, 2010

By L. Finch, Globe Correspondent

It wasn’t cancer that doctors discovered growing inside a 75-year-old Brewster man’s lung in May after an x-ray of his chest showed a small dark spot.

Doctors feared the worst when Ron Sveden, already suffering from emphysema, was rushed to Cape Cod Hospital, coughing with a collapsed left lung and pneumonia. But after multiple biopsies, doctors discovered not a tumor — but a pea seed germinating inside Sveden’s collapsed lung.

They removed the sprout, about a half of an inch tall, and Sveden has recovered.

(full story at the Boston Globe)

Stories like this are what lend credence to those “old wives’ tale” type warnings we used to get as kids.  You know the ones, “your face will get stuck like that if someone hits you on the back”, etc.  I suspect these are culturally specific.  E.g., a good friend of mine worked in Italy for a while and consistently horrified her host family by insisting on drinking not just cold beverages (which apparently is bad enough) but beverages with ICE!  One day, she did become ill, suffering from some gastrointestinal upset and pain.  My friend reported hearing members of her host family telling the doctor in hushed tones that although they had warned her not to, she had insisted on drinking ice cold beverages – which all right thinking people (Italians) know is a trigger for GI trouble.

So what is your favorite medical urban legend/old wives’ tale?

owning up

Idiocy will happen, to all of us.  Anyone who thinks they are immune is lying to themselves.  Here’s a really great example of owning up to a brand of idiocy that is especially cruel.

great idea!

Just reading the news this AM as I wait to do what I need to do with various, er, containers.

Here’s an excerpt from an interesting story – what a great idea!
He’s not a patient, but plays one for class
Students studying geriatrics in Maine live for weeks in N.E. nursing homes
By June Q. Wu
Globe Correspondent / July 19, 2010
Full story at the Boston Globe

Matthew Sharbaugh checked himself into a nursing home recently, complaining of chronic pulmonary obstructive disease, congestive heart failure, and right-side weakness from a recent stroke. He is 24.

Sharbaugh had signed away his youth for the next 12 days to play the part of an 85-year-old man in ailing health at the Old Soldiers’ Home in Chelsea.

A second-year student at the University of New England College of Osteopathic Medicine in Biddeford, Maine, Sharbaugh is one of six students living in a New England nursing home this summer as part of the school’s Learning by Living experiment, founded in 2005 to provide students interested in geriatrics with firsthand experience of the care of the elderly. This year is the first the program has expanded to include a facility in the Boston area.

Sharbaugh, who keeps a daily journal chronicling his observations, said last week: “I never really noticed how hard it is to live like this. I just always thought of old people as grumpy people who are easily upset.’’

By his fourth day, Sharbaugh, of Simsbury, Conn., came to appreciate the patience needed to cope with the daily frustrations facing wheelchair users: a misplaced TV remote, a notice posted too high.

Adjusting to his new life took time. His wheelchair beeped alarmingly every time he tried getting up or shifting his weight. His diet of pureed foods did little to satisfy his appetite. The first time he showered, he was unable to turn his wheelchair and ended up washing just the left side of his body.

Going to the bathroom became an art. With a twinge of shame, Sharbaugh learned to coordinate his bathroom trips with nurse shifts to avoid asking the same care provider for help more than once.

From his wheelchair, Sharbaugh also picks up on details that can enhance or detract from the quality of care for elderly patients.

He notes the importance of communicating at eye-level with the patient, of explaining medical procedures to the elderly and not simply to their adult children.

“It’s extremely difficult to hear the medical jargon and not know what it refers to,’’ Sharbaugh wrote in his journal. “When I have my practice, I will have to be sure to explain the patient’s care in terms that he or she will understand.’’

Established by his gerontology professor, Marilyn Gugliucci, Learning by Living is billed as the only program in the country that allows students to live for two weeks as patients in participating nursing homes, which willingly forgo the revenue, roughly $300 a day for 12 days, to support the initiative.

Gugliucci, who is the College of Osteopathic Medicine’s director of geriatric education and research, said she hopes to expand the program into a national fellowship for students interested in geriatrics.

….“There is a face and story behind every patient,’’ Sharbaugh wrote. “The patient should not be viewed by the conditions that ail them, but by the person beneath the disease.’’