Reliability does not equal predictive value

I guess because we’re in the midst of Lyme season here in the Lyme rampant states today I googled “lyme disease” + test + research. The second “scholarly article” return was this one which I found interesting enough to read in full text (and to follow several linked references to and from).

Klempner, M. S., C. H. Schmid, L. Hu, A. C. Steere, G. Johnson, B. McCloud, R. Noring, and A. Weinstein. 2001. Intralaboratory reliability of serologic and urine testing for Lyme disease. Am. J. Med. 110:217-219.
Article Outline
Laboratory testing for Lyme disease is controversial because of problems with test sensitivity and specificity, the lack of standardized reagents, and interlaboratory and intralaboratory variability [see article for hyper-refs]. We determined the reliability of a serologic test and a urine test for Lyme disease, each performed in a reference laboratory, in control subjects and patients with Lyme disease who had posttreatment symptoms.

Material and Methods
Study Subjects
We studied 10 healthy control subjects who had never had Lyme disease and 21 patients with a history of acute Lyme disease, as defined by the Centers for Disease Control and Prevention [see article for hyper-refs], who had chronic (>6 month’s duration) fatigue, musculoskeletal pain, or neurocognitive impairment despite treatment with recommended antibiotics.

Sample Collection
Serum samples were obtained from all 21 patients and the 10 control subjects. One aliquot was immediately analyzed; duplicate aliquots were frozen at −70°C and tested within 6 months after collection.

Serologic Test
In all 10 control subjects, the initial western blot analysis yielded negative results. In three of four duplicate specimens analyzed, the same immunoreactive bands seen in the original aliquot were present; 1 duplicate specimen contained a 41-kDa band that was not present in the original aliquot.

In the 21 patients with Lyme disease, the results of the initial western blot analysis were positive in 14 cases and negative in 7. Analysis of duplicate specimens yielded identical results in all 21 patients (κ = 1.0, Table 1). The same immunoreactive bands identified in the first analysis were present in 7 of the 14 seropositive duplicate samples; 5 samples had 1 additional band, and 2 samples had 2 additional bands. Repeat testing of the 7 seronegative samples showed fewer than 5 reactive bands in all samples.

To sum, using the “five band” criteria, the test-retest outcome was great when we consider just the 10 control subjects. Moreover, one might conclude that a negative blood test reliably predicts/detects the absence of disease in a person who does not have the disease. Further, a positive blood test reliably predicts/detects the presence of disease in people with it. However, a negative blood test is not so great a diagnostic tool for someone with the disease. That is, there are false negatives among the 21 experimental subjects, 7 false negatives in both the test and retest conditions (- reliably). That’s one third of experimental condition subjects who tested negative twice despite being diagnosed with Lyme. How do our authors interpret these findings? In explicit terms, very narrowly.

Our study showed that testing of duplicate serum specimens from 21 patients with Lyme disease and 10 healthy controls by a single reference laboratory using a commercially available immunoglobulin G western blot kit gave 100% concordant results for seroreactivity and highly reproducible results for the identification of individual bands.

Yes, the results were “reproducible”, thus the test is deemed reliable. What does this mean for practice? That is, should we extrapolate that the western blot is a good test for confirming (or disconfirming) a suspected diagnosis of Lyme Disease? The authors make a cited claim that “In patients with chronic symptoms of at least 6 months’ duration, the most appropriate serologic test for prior infection with B. burgdorferi is the immunoglobulin G western blot, which is recommended by the Centers for Disease Control as the final basis for determination of seroreactivity.” which, given its context in the publication, serves to link the reliability of the western blot with it being a good tool for diagnosis.

So I guess if you think you have Lyme, you’d better hope you’re not a member of portion of the population who may get a false negative test result.

For more (and quite interesting) reading on predictive value of tests as diagnostic tools (which is different from the reliability of such a test), search terms “sensitivity” and “reliability”. A nice overview of the topics as they relate to diagnostic testing is given in this piece by Tze-Wey Loong titled “Understanding sensitivity and specificity with the right side of the brain“.


I’m having my second ever colonoscopy on Friday. Or I’m supposed to at least.

PEG is such an innocent sounding word. Reminiscent of what is at the moment a sort of ironic song, or an ironic bit of lyrics. “Peg, it will come back to you…” And indeed, it may if what might be coming back (up) is your clear liquid dinner.

Really, it should be PEIG, which stands for “Plastic-like Emesis Inducing Gunk”. Why a PE(I)G prep? Why indeed.
From EndoNurse
In a recent attempt to assess which bowel preparation agent is most effective, researchers conducted a meta-analysis by pulling studies that were published between January 1990 and July 2005.2 The meta-analysis discovered that sodium phosphate (NaP) was more effective in bowel cleansing than polyethylene glycol (PEG) or sodium picosulphate (SPS). Patients showed more difficulty completing PEG than NaP and SPS. All three were comparable in terms of adverse events, with PEG resulting in slightly more adverse events than SPS. NaP resulted in more asymptomatic hypokalemia and hyperphosphatemia than the other two, leaving the researchers to conclude that “the biochemical changes associated with a small-volume preparation like NaP, albeit largely asymptomatic, mandate caution in patients with cardiovascular or renal impairment.”

I have no cardiovascular or renal impairment. So, ummm, why am I getting the PEG prep? My theory is that I am getting the prep which is standard when the clinician assumes the patient is likely to be overweight, hypertensive, and possibly older (male). Sorry if that sounds mean. Any hostility comes from my irritation that male is still too often the medical standard, and I have some issues about which populations are sampled and then generalized to in research in general.

Anyhow, I’m not in that set – the set being people who you should give a crappier prep to because the crappiness of the prep is overshadowed by the need to not pump this person full of salt. I’m a skinny, hypotensive mid-thirties woman who fills up so fast she usually can’t eat a whole meal at a time and who has a history of low Na levels.

Is this an example of one size fits all medicine or does my GI doctors office know something they should perhaps share? I’m too tired to push the issue. I’m going to try to get this shit down and keep it down, but if I end up not adequately prepped because my doctor’s office insisted on a crappy prep for crappy reasons I’m probably not going to be feeling terribly compliant…at least not for a little while since I already asked once “er, do I really have to do the PEG prep?”

My prep instructions tell me that “if vomiting persists, stop the prep and call our office for instructions”. When my GI’s office calls back about the Donnatal/anticholinergic/antispasmodic issue, I’m planning on asking exactly how many times a person must vomit before we consider it to have persisted.

Nice site

Hey I just ran across a great section of what is looking like a pretty neat site, IBS Treatment. The section I came in through has patient reviews of various IBS drugs, with both an American version and a UK specific listing. The latter is a bit small, and I don’t know if this reflects a true low number of UK specific IBS drugs or if the database just needs to be grown. To write a review, you must be diagnosed with IBS. The site is run by Sophie, who also has an IBS blog.

response to Disability Law

In response to my post Disability Law,
Stephen said…
McCain’s record of voting against issues important to people with disabilities speaks for itself. This recent complete reversal on his views is nothing more than typical McCain political pandering.

I started replying in the comment field but realized my reply is bigger than a comment.
So here goes.
I don’t know McCain’s record on the issue, but I’m not surprised to hear this Stephen. I do know that the quote in this article reads, to me at least, as McCain saying that his goal is to change the law to make it HARDER for people to qualify as “disabled” and thus limits the people who can seek legal recourse for discrimination and other (unnecessary, remediable) disabling circumstances.

I want to take a moment and clarify my definition of disability. To me, disability has (at least) a double meaning. That is, it can be a property of the individual when it comes to something like the ability to live without pain, the ability to think and reason at your full intellectual potential (that alone is a loaded term, “full intellectual potential”. It would take another post to unpack and you all would have to bear with my halting attempts to articulate something I haven’t really gotten straight in my own head. For the moment, assume I mean it in a more or less self-relative way). However, it is also and often a property of the individual in the environment. Is my now chronic joint pain disabling? Aside from the more person-based aspects of it, it certainly is in the practical or environmental sense if I cannot access accommodations like a van to get me around campus.

Here’s an example. I was once told on campus that access to a certain service was a privilege, not a right. This came up when I was trying to file a deferment of student fees over the phone. “No, you have to come in in person and do it” I was told. “Can I make an appointment then?” I asked. “No. It’s walk in only,” was the response.

Now, it was the start of the winter semester. There was snow everywhere and my campus does a notoriously poor job of removing that snow. This means if you have any mobility issues, getting around on the sidewalks on campus is exceptionally hard. It can create insurmountable problems if you don’t have the means, time and equipment included, to plan ahead. Moreover, even once you navigated your way to the building where you had to go in person to sign up for the deferment, you would have to stand (if ambulatory) in line, sometimes for over 30 minutes.

This was a problem for me. Although I can get around on my feet on all but the worst days, on most days I can’t stand for a half hour, and some days I cannot stand around for much over 5 minutes. Sure, I have the option of sitting on the floor – the floor that is covered in sandy slush from the boots of students standing in line. I have the option of stepping out of line and sit in a chair and hope the people before and after me are nice enough to let me back in with no or minimal fuss (and there is likely to be fuss because due to prevailing attitudes and how I look, I would be perceived as wanting “special treatment” by my peers). Thus, neither of these are ideal options. Neither is practical, and moreover, neither allows me the minimal level of dignity and self reliance that most of us (whether more or less disableable) reasonably expect.

So what to do? It seemed reasonable to me that the university should have some way to accommodate this, and I said so to the woman on the phone. What seemed easiest was to allow students for whom the set up and culture of the campus made accessing this service in person extra difficult to access this service remotely – i.e., by phone. The woman I was talking to became contentious. Her response – deferment is a privilege, not a right.

By extension, accessing fee deferment services apparently is a privilege afforded only to students who are not easily disabled by the (remediable) environmental restrictions of the campus (in winter) and the office (year round) in the context of the culture.

Could I have arranged a van pick up/drop off, I wonder now that I’ve managed to secure access to the campus van. Yes. However, in the case of accessing “walk in” (ha) service on campus, you never know (a) when you’ll be seen and (b) how long you’ll wait to be seen and (c) how long it will take to get the business done that you came to do – all of which create problems for trying to schedule van drop off and pick up times. So the van would be a problem (they prefer 24 hour notice of pick up/drop off times and locations) and if I didn’t want to end up sitting on a slushy floor or relying on the kindness of strangers, I’d have to wait until I had a full two hour block or a ride from a friend (which I hate using because my physical condition necessitates way too many “favors” already) to go in in person and conduct my business. Moreover, there was still the issue of standing around waiting in line. So it had to be a day when I wasn’t feeling shitty so I could stand in line for as long as might be needed. This is truly hard for me to predict with any accuracy, which means I may need to cancel a 24 hour in advance booked van ride at the last minute (something they frown on), cancel my request for a ride from a friend (thus “burning” a favor), or rally myself to get over there only to find I am too drained to wait as long as I need to in order to conclude my business. End result? What could be a more manageable aspect of my physicality becomes a disability with financial and education access repercussions (not to mention the emotional aspects of being told my physical status makes me unworthy of this “privilege” and of being totally thwarted in my attempt at self sufficiency).

I feel this should be the spirit of any law which is meant to address equal access for people with potentially disabling conditions. That is, the law should reduce disabling situations or disabling environmental properties. Not every physical trait can be predicted, although clearly some should be (limb use, sensory differences, and stamina being high up on the list), and thus the notion of “accommodations”. So when a situation or environment is such that despite being accessible for the predictable varieties of humans who will use them, any good law should grant and ENFORCE access to accommodations. Certainly, no law is going to make me pain free, but if it’s written right and enforced, it will make it so I don’t have to choose between hurting myself and readily accessing opportunities and/or services which are available with what are at most only minor inconveniences for other people.

Thus, my limited understanding of how the language of the law has been interpreted is that it has had the effect of creating increased disability (with the definition of disability being one which includes the context of the person in his or her environment) by assuming an overly narrow interpretation of what it means to be traited in a way that makes you more easily disabled and what it means to disable.

I added a link to this blog which I have only had a chance to explore briefly, but it looks pretty good. It’s an advocacy blog for the ADA Amendments Act. I’m looking forward to reading more on this issue and following it in the coming months.

Me and my meds

UPDATED August 30, 2008: I’m getting a lot of hits on this post from people looking for info about the hyoscyamine/Levsin shortage. The best I can offer (aside from my rambling story time post below which does actually have some useful information) is a more recently updated but still not very heartening bulletin from “The American Society of Health-System Pharmacists”, full text at link & excerpt immediately below. If you have any more elucidating information about what’s going on with this drug, please pass it along in a comment!
Hyoscyamine Tablet
25 August 2008
Products Affected – Description
Hyoscyamine sulfate, Alaven
Levsin 0.125 mg sublingual tablet, package of 100 (NDC 68220-0113-10)
Levsin 0.125 mg sublingual tablet, package of 500 (NDC 68220-0113-50)
Levbid 0.375 mg extended-release tablet, package of 100 (NDC 00091-3538-01)
Levbid 0.375 mg extended-release tablet, package of 500 (NDC 00091-3538-05)

Hyoscyamine sulfate, Capellon
Symax Fastabs 0.125 mg orally disintegrating tablet (NDC 64543-0114-01)
Symax SR 0.375 mg extended-release tablet (NDC 64543-0112-01)
Symax SL 0.125 mg sublingual tablet (NDC 64543-0111-01)

Hyoscyamine sulfate, Ethex
0.125 mg orally-disintegrating tablet (NDC 58177-0423-04)
0.125 mg tablet (NDC 58177-0274-04)
0.125 mg sublingual tablet (NDC 58177-0255-04) – discontinued
0.375 mg extended-release tablet (NDC 58177-0237-04)

Reason for the Shortage
* Multiple manufacturers (Actavis, Major, Ascher, Alphagen, Qualitest, Teva, Kremers Urban, Excellium, UCB Pharma) have discontinued their hyoscyamine products. All hyoscyamine products are unapproved.
* The manufacturer of Ethex brand hyoscyamine products (KV Pharmaceuticals) had multiple unapproved products, including hyoscyamine, seized and destroyed by FDA on July 30, 2008.

Some weeks ago, I had an appointment at my GI doc’s office. My gut had been more or less stable for over a year – as measured by weight and nutritional status as well as quality of life issues like number of bowel movements a day and level and frequency of pain. For me, I use the latter two as predictors of likely impact on the former. There’s a very tight and strong correlation if you map the symptoms and signs out over time (greater than a month I’d say). A few months ago, the gut cramps started getting routinely worse. My toilet time was increasing as well. I put off making an appointment, hoping this was just a bump. But when the pain and frequency got bad enough that they were affecting my job attendance (tardy because I kept having to return to the bathroom in the AM) and performance (alternately spaced and cranky from pain), I made the appointment.

I told the GI nurse practitioner I saw that I had already increased my hyoscyamine and was taking about 4 pills a day. I made sure to communicate that I can take more and am OK with taking more but I’d need a script written for more since my primary screwed it up last time they called it in. Also, I was very clear with the GI nurse that I thought this change in severity and frequency of my symptoms was something to attend to not simply for relief of these symptoms but for reassessment. This is something I’ve had a hard time communicating to doctors, particularly GI doctors, in the past. Maybe there’s something I don’t know, like maybe it’s normal (as in common, innocuous, and expected) for people with hyperactive guts (for lack of a better term) to become desensitized to their meds and require periodic increases or changes. But so far, no one has sat me down and explained that. Also, if anyone were to try, they’d have to do a lot of explaining because quality of life issues aside, I simply won’t accept that it’s innocuous for someone whose appetite and activity level are relatively stable to become clinically malnourished every 18 months.

GI nurse was agreeable. She’s up for a reassessment, starting unfortunately with a colonscopy, of course. This office has wanted to do one since last Fall and I put them off once already*. I agreed to one this August but with the understanding that if it’s negative, we at least consider looking at the small bowel and discuss vasculitis as well (steroids made my gut feel mmm-mmm good).

In the meantime, she told me she’d write me a script for something other than hyoscyamine, partly to give me something stronger for the worsening symptoms and partly because her patients were reporting problems with hyoscyamine distribution. Indeed, I had just been told at my pharmacy that I couldn’t have my script refilled. I find if somewhat disheartening that the pharmacist didn’t know (or seem to care at all) why there was no hyoscyamine to be gotten.

A bit of research has turned up the following information about the hyoscyamine shortage:
From the Cleveland Clinic Pharmacotherapy Update (full text is on the last page of this PDF document)
In June 2006, the Food and Drug Administration (FDA) made their Unapproved Drug Initiative a top priority (See Pharmacotherapy Update newsletter May/June 2007). This initiative was established to emphasize the FDA’s commitment to providing consumers with safe and effective medications.

All hyoscyamine (Levsin®, Levbid®) products are considered to be unapproved by the FDA. These products were on the market prior to the FDA’s approval process that establishes safety and efficacy. Although the FDA has not taken action against any of the manufacturers of hyoscyamine, many manufacturers have voluntarily withdrawn their product(s) from the market to avoid a potential review by the FDA. This has resulted in an unexpected increase in demand on some companies, and thereby creates a shortage for the remaining products.

And so I left my GI doctor’s office with a script for some good old fashioned donnatal . Ever had donnatal? If you’re a doctor who prescribes it or who believes the donnatal cocktail is a suitable substitute for the more simple but similar drug hyoscyamine/Levsin, you should try it. Seriously. I suggest this because apparently doctors think ingesting belladonna with a side of barbiturate is as innocuous as sniffing a daisy on a summer day but woah mama, let me tell you, it’s not. Why do I call it a cocktail? Because here’s what’s in it: A pinch of Hyoscyamine sulfate, a dash of atropine sulfate, a whisper of scopolamine hydrobromide, and a liberal splash of phenobarbital. I do believe it’s the last one which does me in, taking a toll on my ability to do things like walk and talk. I’ve had it before, once, in college. It is not a functional medication for me. That is, it leaves me stuporous and trippy, which is not exactly the goal in medicating my pain and frequency since both non-treatment and treatment with donnatal have the same outcome of lost productivity.

For the past few weeks, I let the Donnatal script sit in my drawer unfilled while I whittled down the plain ol’hyoscyamine-sl tablets left in my bottle. And while I was counting them (6 left), I discovered a nasty little bit of information. My script is for one pill three times a day, as needed. This is not exactly right, and the reason for it is the result of my new (as of this year) primary care doctor’s office having communication problems. What I had been on was 1-2 tablets 3 to 4 times a day. I hadn’t been taking it that much when my new primary refilled it with the scanty 1 tab TID order so although I noticed they called it in short, I didn’t make a fuss about it at the time. Now that I was in greater need and looking over the information on the bottle, I realized that by my reckoning, 1 tab TID should equal 90 pills for a month’s prescription. On my bottle it said “60 pills”. WTF?

I took out my other pill bottles and noticed similar shortcomings. Ok, it must be the PRN aspect, I figured. I took out even more pill bottles (I have a lot of pill bottles folks), finally getting to the Donnatal which was written for 1 tablet four times a day. Note that this is not a PRN order. How many pills should I have for a month’s supply then? 120, right? Not 80? No, definitely not 80. So why does the bottle say 80? Again I say, WTF?

I called the pharmacy today and asked them to look up how many pills they recorded the order being for. In each case, the number the pharmacy said my doctors’ wrote for was less than what you’d get if you did some math. Here’s what the doctors apparently wrote for.
Celebrex 1 tablet BID (PRN) = 30 tablets (not 60).
Hyoscyamine 1 tablet TID (PRN) = 60 tablets (not 90).
And lastly, Donnatal 1 tablet QID = 80 tablets (not 120).

I called the docs to ask “How do you guys calculate how many pills to write for on a script?” and referenced the particular script. Here’s what they had to say:
– PCP: Er, I’m not sure. I guess I can ask someone.
– PCP call back: Um, we don’t know. It depends on how long the patient needs to take it for and how long the patient’s been taking it for…(I’ve been taking this med for years, I tell them). Also, uh, it depends on the patient. It’s not that important though. (I explain that actually it is because I got a scant refill and then they ran out and now I’m taking a drug that is addictive and unpleasant – I believe in feedback).
– GYN: Hang on, let me get your chart. Ok, written on July 07, no number of pills recorded. Sorry, sometimes we just don’t put down that much information. Here’s the refill in January…by…oh, by me. I called it in for 30 pills with six refills, sorry about that – if you need anything at all, let me know, alright?
– GI: still waiting. The message I left actually was regarding wanting off the Donnatal. I mentioned Bentyl, and said the Donnatal was too sedating and I can’t take it on a routine basis. I’ll hit them with the “how many pills do you write for when you write a script” question when they call back.

Why do I care? This isn’t just nitpicking folks. There’s a real practical side to my asking about this for the PRNs and not. But for the sake of argument, consider a PRN med, like the Celebrex. I take on average one pill every two or so days. But if the weather’s bad and my joints are killing, I take more. If I have a higher than normal activity week, I take more. If I have a bad period, I take more. If one of the ovarian cysts rears up and hits me with weeks long pain, I take more. If some combination of these factors occurs in a given month, I will be taking it BID most days, and 30 pills 15 days worth at that dose. So in sum, I have to plan to have as much on hand as I might need because I can’t predict when I will need to take the BID every day dose and when I might be able to skip it. Therefore, if I need to make a point of saying “hey can you write that for Y pills please?” (where Y = daily maximum x 30 days), I will. But I need to know that I have to ask.

And why am I blogging about it? Aside from letting you know that Donnatal is not a mild drug, my point in writing this today is to share my experiences in a subtle little bit of patient advocacy/communication with you. If you’re a provider, you might want to consider it a caution in assumption. Write for what your patient takes. If you really do know the patient well, sure, you can assume more or less safely that you know what the patient’s needs are. But if you don’t know the patient that well, why not ask? If you’re a patient, look at the script carefully. Do the math. Ask for clarification and correction of even what seems like a small error or discrepancy in your meds and med orders. These little things can add up. For me, they add up to less than ideally managed symptoms. There’s a financial consequence as well in terms of more frequent refills.

* = I’m thinking there should be some kind of frequent flier program for scopes. Maybe like those cards they have at coffee shops, where you get it stamped or punched each time you go and eventually you get a free coffee or a coffee upgrade. If I’d been stamping since my first ever endoscopy, I’m fairly certain I’d have a free angiogram by now.

Disability Law

I find the last paragraph of the excerpts from the AP article (below) to be a great example of doublespeak.
For more in depth information on the bill referenced below and the issues surrounding it, go here.

McCain vows to back changes to disabilities law
By Jacques Billeaud, Associated Press Writer
Jul 26, 2008

COTTONWOOD, Ariz. – Republican presidential candidate John McCain is pledging support for a proposal to expand protections for disabled people under an 18-year-old landmark civil rights law.

Speaking from Arizona by satellite to a disabilities forum in Columbus, Ohio, McCain said Saturday that revisions to the Americans With Disabilities Act must leave no doubt that it was intended to protect from any discrimination that’s based on physical or mental disabilities.

The Supreme Court generally has exempted from the law’s protection people with partial physical disabilities, as well as people with physical impairments that can be treated with medication or devices such as hearing aids.

“We must clarify the definition of a disability to assure full protection for those the law is intended to serve,” said McCain, who was spending the weekend at his nearby northern Arizona getaway.

McCain said blame for the narrowed scope of the law shouldn’t be placed on the Supreme Court, but rather on Congress. “In all due respect, I would put the blame right back on us for not writing legislation that is strong enough and specific enough so that the Supreme Court wouldn’t even have to consider these cases,” McCain said.


I fell asleep in pain and I woke up in pain. Because I’m currently unemployed (going on two weeks now since my last job ended), it wasn’t as big a disaster as it could have been. However, to say that it gave me pause to be in such pain right now would be an understatement. I didn’t want to stay in bed because being unemployed is freaking me out enough, evoking the questions of how employable am I? E.g., would I be able to do a corporate training job which otherwise sounded exactly like something I can do and would enjoy doing but for the fact that the job description says I must be able to lift and/or move up to 25 pounds…with or without reasonable accommodations?

The negative effects of acutely experiencing the aspects of my physicality which prompt such questions in the first place would be worsened by feeling like I had to spend the day in bed. And for me, when I’m already worrying about my limitations, spending even extra hours in bed starts to feel like the dread practice of spending the day in bed. And so I got up and crept out into the kitchen. I sat on the floor to feed the cat (can’t bend over) and then stood up to make myself a cup of coffee. I did all these things because this is normal. Coffee, food, showering, getting dressed. This is what I’d need to do on a normal work day, and if I can’t do them today, does that mean I can’t do them reliably enough to be employed on a regular work week kind of basis?

As you can probably guess from my tone here, this little plan of mine ended badly. After having A___ help me get back in bed (and get the requisite cold wet cloth for my head – don’t laugh, it does work when I’m feeling “faint”, for lack of a better word*), I took some donnatal which has been sitting untouched in my drawer for the better part of a month. I’d rather not be taking but the current distribution problems with hyoscyamine have made my preference a moot point. The donnatal knocked me out pretty good. I slept for another two hours. This time, I woke up in less pain but feeling emotionally unwell. I’m frustrated and I feel less hopeful too. I couldn’t shake thinking that if this had been a work day, I’d be looking at a really shitty decision – call in and risk looking bad or go in and risk passing out (at a desk or – my personal least favorite – in a bathroom).

It’s situations like this morning’s pain crescendo which tend to push me to preemptively limit myself. I.e., feeling bad? Ok, so don’t get out of bed. Call it a “bad day” and try to take care of myself so I don’t turn one bad day into many. This attitude though, or maybe it’s more of a practice…how about “practitude”? This practitude is not without conflict. The conflict and attending negative feelings arise when I am faced with feeling the need to do what I believe (empirically) is best for me physically but which behaviors are considered by our social standards (and myths, and principles, etc) to be self-disabling. As much as I’d like to think I am a self made person, I cannot deny that it seems I have internalized some of the social bullshit about illness. Maybe, to cut myself some slack here, it’s not so much internalizing as it is simply awareness of these attitudes and how they will be applied to me. I have been (casually and not so casually) judged for engaging in preemptive “self-disabling” behaviors in the past and so maybe now I just have been conditioned to be hyper-aware of them.

I dunno. I’m thinking it’s more the former, the internalization thing. I think this is more plausible and one reason I believe this is that I wasn’t always a chronically sick person. I wasn’t always as limited as I have been in the last 6 years and so this means I was in fact one of the people who probably judged others. Let’s see….have I? Hard to know. The lens of the present quite reliably distorts attempts to get a view of the past.

Well it’s something to think about anyway. How to deal with my conflict has lead me to some research. I just ran across a paper called “Health Psychology: Psychological Adjustment to Chronic Disease” (Stanton, Revenson, and Tennen 2007) where some aspects of the struggle I’m talking about was summed up quite nicely.

Adjustment is most commonly defined as the presence or absence of diagnosed psychological disorder, psychological symptoms, or negative mood.

Unbalanced attention to positive adjustment can also have untoward consequences. The expectation of the unfailingly “strong” patient permits the ill person little latitude for having a bad day (or a bad year). Presenting a positive face may become prescriptive, so that one falls prey to the “tyranny of positive thinking” (Holland & Lewis 2000, p. 14) or the notion that any distress or negative thinking will exacerbate chronic disease.

* = I’d like a better word since “faint” doesn’t distinguish between that shitty but rather benign low blood pressure moment upon standing and that sweat drenched, gagging, nightmarish feeling thing that happens when I am going under completely.


It’s July. This means it’s national “how the fuck do I order that?!” month.

As a unit clerk, I dreaded July. Sure, it meant some new fresh folks to replace the ones who had been worn down and frayed by February. But it also meant too many over-eager interns and inflated residents strutting their stuff through our halls, sitting at my computer, walking off with my pen, running away with charts, and sleeping through pages. Overall, I saw July as one big pain in the ass. However, I hadn’t really thought about what it meant for the patients until 1997.

Back in 1997, my brother was admitted to a big city hospital, one of those mammoth teaching/research jobs, the first week of July. Depending on your perspective, he presented either a mess or a mystery. That is, there were several paths you could have gone down to try to come up with one explanation for all the symptoms.
Here’s the most obvious stuff. He was a recently HIV positive 25 year old male who came to the emergency department with renal angle tenderness, vomiting, diarrhea, fever. Oh and he was quite overtly jaundiced too. I don’t know the meds or the lab values – this was years ago now and if I knew this information I’ve long forgotten it. Long story short – here’s the important info which a good history would have elucidated. My brother had spent the weekend before this illness started at a Pride celebration which apparently entailed the mandatory drinking of many Rolling Rocks in the sun for the better part of two days. He had tried to keep up a good (non-alcoholic) fluid intake since one of his HIV meds came with stern warnings about fluids and what could happen to his kidneys if he didn’t get enough with the med. However, the intentions for decent hydration were shot when he ate some bad yogurt which resulted in vomiting and diarrhea and fever. Oh and he has Gilbert’s syndrome.

Needless to say, my brother’s hospital stay was a fucking disaster. He was bounced from one service to the next in the attempt to come up with a single diagnosis which would account for each symptom, sign, and lab value. His primary care doc (ID) was on vacation, a fellow was covering in the office. No one knew who was authorized to talk to whom. The various services couldn’t keep my brother’s coverage straight, and the nursing staff didn’t know which doctor was on what service and what service was on call when. Labs which were ordered didn’t get drawn because they weren’t ordered right the first time (and sometimes second), peaks and troughs were inverted or totally missed. Unnecessary imaging was performed, biopsies were ordered and then canceled at the last minute. Follow up on any error was somewhat expectedly poor given the many, massive cracks for something as apparently minor as bloodwork or a CT scan on a stable inpatient to slip through. Like I said, fucking disaster. But we stuck it out. We did so by constantly leaning on the primary’s office, keeping our own notes about what had been ordered when, and getting to know the interns and residents really well. Yes, we were the pain in the ass family, but keep in mind, my brother’s HIV status was still new and his doctors had been going down the path of kidney infection so we were scared. Eventually, the multiple, cascading causes of my brother’s presentation were elucidated and addressed (more or less) and after only three false starts (“hey, he’s going home today as soon as they do rounds and write the order!”), he was finally discharged.

I’d like to think that hospital and residency administrators had identified the little mini-catastrophe that a service-wide medical staff change like this causes every year, that they’d learned some tricks like staggering schedules so that radiology, anesthesia, internal medicine, surgery, emergency medicine, and infectious disease didn’t all completely change staff at the same exact time, but I’m guessing this is more of my boundless optimism. I’m guessing that because my aunt just checked herself out AMA from another (different) big city hospital last night after being juggled, bounced, and rescheduled around for days. She was admitted Friday night for a Monday AM bronchoscopy (looooong history of heavy smoking – PET scan showed a mass). The scope was postponed all day Monday due to a back up. Then Monday night, the team changed its mind and decided on a needle biopsy (placement of the mass), but it was impossible to schedule with radiology through Tuesday. Tuesday evening, a nurse told my aunt “yeah, this kind of thing happens all the time”. I understand why she said it, and I expect her intentions were entirely good and even sweet. Unfortunately, my aunt had been cooling her heels inpatient for too many days so she could undergo a procedure to confirm that she has lung cancer – at least this was what was going on in her mind no doubt. And while she waited, patiently or not, she was witnessing the hospital screwery that is July. I think the conversation with the nurse was the last straw and also an excuse to run away. Within an hour she had signed herself out AMA and now plans (or says she plans) to have her primary care doctor set up the biopsy outpatient through Local City Hospital, which has earned the nickname of “Local Shitty Hospital”. But who knows, maybe Local Shitty (not a teaching hospital) isn’t so bad comparatively speaking, at least in July.

Lyme-tube 1

I’ve been hoping to make a Lyme public service announcement for the radio, oh for a while now. If you have chronic health problems, you know what it’s like to find time for these “extra” things. Anyhow, I am determined to do it this year, mostly because I still run into people in my area who do not know even the basics about Lyme disease. Where I live is an extremely high Lyme disease area. I just went to a work party-thing where the host chided me and another guest for not wanting to sit outside. Three days later, we found out the host had been bitten by a tick. How’s your poetic justice? The guest who had taken the warnings of Lyme seriously has since dubbed such events “tick-nics”. An apt name for any outdoor event here in Lyme-ville CT.

I’m hoping my host doesn’t catch Lyme from this bite – although the tick was on for a while and as I said, the area has a very high rate of Lyme disease infection.

Don’t find out about Lyme after you get bit. Some people are diagnosed quickly and treated effectively, and they are fortunate enough to be cured. I know a few of them. But there are people whose symptoms fail to respond to treatment. I’m one of them.

Here are some folks who posted their Lyme stories on Youtube.