bad dream and blood sugar

Which came first?  The low blood sugar or the bad dream that woke me up this AM at a quarter of 5?  The outcome is the same – laying in bed after sleep-kicking my husband (hard, btw) and not able to ramp down and go back to sleep.  So I’m up, drinking sugary coffee and turning my brain away from the bad family dreams to doing crazy things with PDFs.  The PDFs are for a student I work for.

My husband asked me last week if I felt that my job was challenging enough, “You know, I mean intellectually.”  It is challenging in other ways, for sure, and I’m glad he realizes that.  Is it intellectually stimulating?  Well, I do miss the more scholarly pursuits that I had once been on track to do forever.  But I think even if there had been jobs to be had, I would have eventually felt like what I was doing was glorified naval gazing.  With my job now, what I do is a lot of problem solving.  And it’s problem solving that allows people to get to where I got, to get an education, to have the tools to discover and choose (at least to some degree) what they want to be “when they grow up”.  While I do like the helping people angle, I have to admit that this is probably secondary.  I am by nature a problem solver.  I like untying knots.  Christmas lights used to be my job as a kid.  There is something engaging and ultimately rewarding about finding the connections, tracing the path, removing the tangles.

Ok, so I’m up.  Coffee’s working, time to work.  Do something engaging.  Untie a knot that is workable.  The ones that exist in my mind and body can wait.

 

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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!

Rx or Dx shopping?

Sitting here having my Sunday AM coffee (yes, and cigarette) perusing what the internet has to offer me today.

    • Facebook friends mostly asleep still, or at church, or out enjoying the few hours of sun that peeked through this morning after the blanket of fog lifted.
    • No new rentals in the local papers and Craig’s list is the usual wasteland of ads poached by questionable realtors competing to place tenants in overpriced apartments which justify their ungodly expense by offering “luxuries” like community activities, rec rooms, weight rooms, and massive (utility sucking) windows despite having shitty construction, poor management, and paper-thin walls.
    •  News stories.

There’s one on a national prescription database to help curb prescription drug abuse that catches my eye. It’s in my local paper, which is a bit too local for me to post a direct link to, but it’s a “big” story so it can be found repeated in any number of other online sources.

Forbes:  Fighting prescription drug abuse with a national online database, where ER physician Robert Glatter writes “It would be quite valuable for a physician to have knowledge of previous visits to clinics and hospitals as well as prescriptions that a patient may have received in a real-time fashion–not only as a safety-net, but also as a way to deter the ever growing problem of prescription drug abuse by “doctor shopping”.”

The Boston Globe: Bill would require screening on prescription pain relievers, “Implementation of the bill is expected to cost between $2 million and $4 million, mostly related to the expansion of the database. But lawmakers emphasized yesterday that the practice of doctor shopping and hospitalizations from overdoses carry costs as well.”

Ok, so here’s the thing.  I know that there are people out there who love the pills.  I don’t personally know any one, or know that I know anyone, with this affliction.  But I realize that my own direct experiences do not inform the entirety of the picture.  However, my own experiences are valid and are shared by others, and the rhetoric of these reports makes me nervous that people like me – non-drug seekers who end up “doctor shopping” because we have something that no one can or will diagnose and who, along the way, may accumulate some scripts for the more commonly abused drugs – are going to find the legitimacy of our experience completely trashed by casting us as people who are looking for something illicit and/or inappropriate.  Again.

I believe I’ve said it elsewhere on this blog, but let me say it again here for the sake of anyone who drops in to this blog by virtue of this one post.  I am not a fan of the narcotics.  I’m not a fan of the pills, in fact.  In the order of medical intervention, they are right up there just under invasive procedures for things I’d like to avoid.  Narcotics in particular seem to seriously screw my body up.  I spend most of my days fighting fatigue, hypotension and all the physical symptoms that it brings, nausea, bowel problems – adding narcotics into the mix is a recipe for complications that may be minor for some, if the goal is to pursue a high over all else.  They are not minor for me, someone whose goal is to feel BETTER or at least avoid accumulating a set of sensations and bodily phenomena which combine to make my life an impossible, dysfucntional hell.

Black and white picture of shelves of pills in glass bottles. Attribution: Candy Pills: At a Tiburon candy store. Snapped on: April 13, 2005.  Hasselblad 500C/M, Planar 80 C T* ISO125, Ilford FP4+ film, developed with TMax 6 minutes @ 21°C.

* …and one pill makes you small…

But I end up doctor shopping.  And because whatever is going on with me is difficult to diagnose, or because I sometimes see doctors who don’t have the time to deal with a complex patient, I end up with scripts – some of them for narcotics.  Most of them, I don’t fill.  Last Fall, when my primary care’s office sent me running to the ER from chest pain, I got a script for something…Vicodin maybe?  I didn’t fill it.  My criteria for taking extra-strength pain medication is unbearable, horrible pain that is at 7 or above on my own personal version of the pain scale (which, btw, is skewed high I think – a history of endometriosis, migraines, and bowel spasms can do that to a person).  However, my criteria for seeking medical attention has a lower threshold.  If it is interfering with my daily, necessary activities (washing, eating, dressing, voiding, working) and it lasts more than a few days, I will call the doctor.  What I’m seeking in this case is not drugs, or not only drugs, and certainly not just drugs to mask the symptoms without an explanation of what caused them and how to avoid that in the future.

What I’m seeking primarily or exclusively is ruling out something immediately bad (e.g., pulmonary embolism) and an understanding of how to feel better in the future.  What I tend to get is ruling out something that will kill me on the spot (usually) and an offer for meds – pain meds, antiseizure meds, appetite stimulant meds, psych meds, intestinal motility killing meds, antibiotic meds, anti-vertigo meds, anti-nausea meds, vasoactive meds, salt-retaining/volume expanding meds, PPI meds, histamine blocking meds.  If the thing that brought me into the doctor’s office, clinic, or ER continues after I am discharged without an explanation (and with meds that will only make my life shitty in other ways while reducing the initial symptom – e.g. narcotic pain meds), I am going to end up “presenting” elsewhere to try to get that last crucial bit…i.e. the answer about what the hell this is and a solution.  Not a pain pill, a solution.

So what bugs the bejeesus out of me is that I and people like me will end up looking like the pain med seeking “doctor shoppers” because the doctors we see  don’t have the tools or the skills to more effectively treat us.  yeah, I said it.  That sounds blamey, it shouldn’t.  I fully believe my body is a confounding bastard, so I don’t blame the doctors entirely for having a hard time.  I also believe that my contextualizing of my symptoms can effectively minimize to people who aren’t me and don’t understand the context; that my doctors are not incentivized or are actively punished for including research and THINKING time as part of their diagnostic process.  But I do run into doctors who are too arrogant, too biased, or possibly too stupid to do anything more than run one (possibly inappropriate, or inappropriately done) test then push you out the door – perhaps with a script, perhaps for pain meds, stuffed into  your hands and vague if any instruction about follow up or follow through on what brought you to them in the first place.

You put that all together and you are going to end up with people who are doctor shopping because they are symptomatic.  They may get pain meds, they may take pain meds, but they are not looking for pain meds.  They are looking for answers  and I worry that a one size fits all use of this database is going to put another attitudinal obstacle in our paths – we’re busy navigating the hurdles of being labeled as a socially inappropriate attention seeker only to be thrown into the pit of criminally inappropriate drug seeker.  And that troubles me.

* Photo © 2006-2007 Dennis Mojadocreative commons license

trust

My therapist asked me how I felt about having a diagnosis.  The diagnosis being Ehlers-Danlos Type III, a clinical diagnosis made by a genetic medicine specialist.  Blood work for EDS IV is pending.

Although the list of symptoms/presentation reads like a list of shit that’s wrong with me, I find that I distrust the diagnosis.  Some of this is because I know it will be questioned by many, many doctors, as all clinical diagnoses are.  “Well, how do you KNOW you had Lyme Disease?  I see your blood work here and it didn’t meet the criteria…”  For that one, I don’t bother arguing with them about how they seem to be thinking of surveillance criteria, which the CDC states are specifically “not intended to be used in clinical diagnosis” (or sole basis for diagnosis).  I just show them the EM rash picture and they say “Oh” and shut the hell up.  EDS Type III does not have a reliable test.  It’s “picture” is a mosaic of mostly “subjective” symptoms.  I.e., it is readily invalidated by any doctor choosing to do so.  And they do choose to do so with great frequency.  I consider much of that to be the result of a misapplication of the scientific method by people who are either inherently intellectually lazy or whose intellectual curiosity and excursions have been effectively beaten out of them by years of social reward for unquestioning conformity to authority and punishment for independent thinking (too often seen as feckless, unreimbursable meandering in the context of our education and health care systems).  Oh also there is sort of a tendency towards pissing matches among competitive people and my own experience working with, living with, and married to health care providers suggests that competitive types are over-represented in medicine.  It’s hard to make it through pre-med, med school, and residency if you do not have a strong competitive streak.

So all that said, while it is nice to have a name for that illness…the next time I have to fill out health care accommodation forms, for example, I will have a succinct and rather all encompassing diagnosis…I find I am less than enthusiastic about disclosing this diagnosis to other health care providers.  Like my GYN surgeon, for example.

I mention him because I am about to be cut up.  Well, rather cut into.  Now, I believe that more imaging would have been a good idea.  Perhaps a urology or general surgery consult.  But my providers are of the mind that if it’s not something that the morons who read my CT in the ER saw, then it’s not imageable (really I just can’t trust radiologists who read the CT of a woman who’s had a hysterectomy and bilateral salpingectomy as “the uterus and both adnexal regions are normal…”) and that if GI doesn’t want it, then I should follow up with the GYN surgeons.  And the GYN surgeons, being surgeons, are just like “hey, well it might be adhesions.  We can cut into you and look.”  Because an exploratory lap is not a big deal for them.  It’s like a walk in the park.

Initially, they offered next week and the very end of May.  I took the very end of May because at the time of the consult appointment, I was not in pain and had not had it in a few days.  I tend to have a ridiculously optimistic outlook on this shit, despite all my apparent cynicism.  No pain for four days?  Well then clearly it has resolved!  Stupid me, it came back on Wednesday night.  A little gnawing pain, oh maybe it will go away.  I’ll take half a pain pill.  Then a few hours later another half because it’s back.  Then the next morning, I wake up pain free and think “woo hoo!” only to shower for work, go to empty my bladder and have lancing LRQ pain that felt like I had been run through with a serrated knife.  Ok.  So take half a pain pill.  Nope, pain still there.  Take the other half.  Pain still there and escalating.  Call in to work, take another pain pill, squash myself up on the couch in a cushion cocoon, cry a little bit, talk to my husband who is concerned and stressed about moving, surgery, timing, etc.  And then call GYN surg back, still crying and say “Um, I’m really sorry to have to ask but do you think you can still do next week?  If I wait until the end of May, I’m going to end up using all my leave time from this pain.”

And so pre-op appointment today, surgery Monday, EDS-III possibly making recovery longer than the one the surgeon is going to recommend (they seem to assume all women will be back running marathons and horseback riding in one week after a lap).  I have more forms to fill out, little time to do it, and a surgeon to convince of the need for at least three weeks recovery.

While I have the optimism I spoke of earlier, paradoxically, I have a tendency to distrust that people will do the “right” thing when it comes to making my life more or less crappy.  I need to get over that.  Ultimately it’s about not wanting to have to push when I feel like the wrong thing is being done, or the right thing is not being done.  It’s about not wanting to be seen as pushy because pushy people are a pain in the ass and pain in the ass people are bad patients who invite invalidation, disregard, and maltreatment.  But not pushing gets you left in the dirt too.  So as always, I struggle to find a balance.