foodless in CT

I have a meeting set up with a temp agency today and I thought it would be good if I weren't passing out in their bathroom. Hence, no breakfast for me this morning. I don't like skipping meals, it makes me irritable and lethargic but last night was horrible. I was about 10 minutes into dinner when I got massive cramping lower down. I stopped eating and took a bentyl (my first one). I ate a little more when the first wave of cramping subsided but my appetite finally gave up when the pain started again, and again. Within an hour I was in the bathroom drenched in sweat, huddled on the toilet, retching into the trash-can and hoping the whole thing would just get over with. I lose track of time when things get that bad - it felt like an hour but I think the whole thing lasted only about a half hour acutely. When it was over, I felt deflated, sweat-soggy, cold and shaky for the rest of the night. Times like that, yes I will happily take a Donnatal...well, a quarter of a Donnatal.

And this, in a nutshell, is a BIG part of why my life is so very small now. Even if it's not a bad day re: joint pain, fatigue, migraine, and endo/etc., you just can't go anywhere if experience indicates that any gut cramps might turn into those gut cramps. Oh I suppose I could go places and just not eat, however while the no-food strategy works for the duration of a job interview, it is not a practical option in most situations. So I prefer to eat and thus stay close to home or at home. Ideally, I also prefer to be able to take the medicine I need to help ensure that I at least won't pass out from pain when my gut is launching quasi-digested food into the toilet 5 to 8 times a day. But without the hyoscyamine, I'm stuck fiddling with new meds and hoping one of them (timed right and taken at a high enough dose) works right. For the rest of this week, I'm planning to premedicate with the bentyl (20 mg instead of 10) rather than wait and risk another one of those horrible episodes.

In the meantime, I present for your reading pleasure a relevant (for me at least) abstract.

Simrén M, Abrahamsson H, Svedlund J, Björnsson ES. 2001. Quality of life in patients with irritable bowel syndrome seen in referral centers versus primary care: the impact of gender and predominant bowel pattern. Scand J Gastroenterol. 36(5):545-52.

BACKGROUND: Quality of life (QOL) is reduced in patients with irritable bowel syndrome (IBS) and little is known about differences in QOL in relation to referral status, gender and predominant bowel pattern in IBS patients. This study aimed to explore these relationships. METHODS: 343 patients with IBS according to the Rome I criteria (251 females, 92 males) completed five different self-administered questionnaires to evaluate QOL. There were 119 patients with diarrhea-predominant IBS (IBS-D), 93 with constipation-predominant IBS (IBS-C) and 131 with alternating constipation and diarrhea (IBS-A). The study group comprised 209 hospital outpatients and 134 primary care patients. The questionnaires were mailed to the patients with an overall response rate of 88%. RESULTS: QOL was reduced in hospital outpatients compared to primary care patients, but only in females. IBS subgroup (IBS-D), physical fatigue and general health independently predicted referral to a gastroenterologist. Females had lower QOL than males. No differences, except in severity of diarrhea and constipation, were observed between IBS subgroups. Perceived fatigue was related to well-being, psychological and gastrointestinal symptoms. Independent predictors for fatigue were depression, trait anxiety, general health and vitality, along with eating dysfunction and female sex. CONCLUSION: IBS female patients seen in referral centers versus primary care is a highly selected group with reduced QOL. QOL in IBS is affected by gender, but not by subgroup. Our findings have implications for the generalizability of results in IBS trials. Fatigue is a common symptom in IBS that correlates to general well-being and psychological and subjective gastrointestinal symptoms.

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.

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.

strong

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.

Wanda Sykes on paying for meds

inflamed

Still on the prednisone. I think I'd like to stop but I guess I'm supposed to taper. I haven't been on it long, although it's a high dose and I suppose better safe than sorry. I'm ready to be done with it though. Yes, my hip feels excellent. My gut hasn't felt this well in some time, and so far (knock on wood) I haven't had a single GI side effect from the prednisone.

However....every evening something starts up where my neck, shoulders, and upper back are just killing, and all along my lymph nodes is so sore I feel like they're going to pop. My primary care thinks the pred might have unmasked a minor tonsilitis/sinusitis thing. Sure, why not. My tonsils are of the chronic variety, plus it hurts in all the likely places so that explanation fits. But man, it feels like having a head cold on steroids. (that was a joke, get it?)

And so I've about had it with looking fabulous and feeling shitty. I'll take looking shitty and feeling less shitty, really. However, that's not entirely why I'm blogging. I'm blogging because I just got a health-reduced lifestyle related smack upside the head and it's making me feel totally toxic. I need to get this out somewhere, and well, here's this blog waiting for things to be put into it so what the hell.

I think I've blogged about this or related issues in the past here. I'm not sure. I know I linked to Christine Miserandino's excellent essay, The Spoon Theory, (read it!!!) on the topic of the additive and preemptive ways you limit and are limited when you have chronic, as in daily, health issues. As it plays out over life, the consequences are further reaching than just the things you can't do. I've particularly struggled with the frustration and sometimes near grief over the things I was planning to do but had to cancel. It gets so discouraging sometimes I will simply avoid making plans so I won't have to deal with canceling them.

On top of my own feelings, which are varied and strong, about cancellations, avoidance, or other manifestations of wellness related limitations, I deal with the feelings and reactions of the people around me. Sometimes these fall short of supportive. E.g., I found out today a family member believes that when I limit myself, I am in fact just fine but would rather not do whatever it is I had planned to do, what I wanted to do, or what this family member wanted me to do.

At the moment, this bit of news leaves me immensely frustrated, discouraged, and disappointed.

Feel bad, look great

I recently have discovered that although I kinda feel like shit on prednisone, I look good while I'm on it. This may be the beauty secret find of the season. The low grade fevers I've been running since day three have added a rosy glow to my otherwise normal pallor. And the facial bloating is at a level where it has just filled in a bit of the normally over-deep hollows under my cheekbones giving me a fuller, more sensual look.

Still, I am not looking forward to my next dose.

consent

The capacity in which I deal with consent processes is quite different from the issue at hand in the story below. The people I am obtaining consent from are in a research setting, not a treatment setting. Thus, in the contexts I am most familiar with, the issue of withdrawal or refusal on the part of the patient/participant is to be assumed a basic right. As a researcher, I am very careful to not only explain this but to make the environment felicitous to such a choice on the part of the people who reply to recruitment for our studies. As a teacher, I give my students examples of behavior which would constitute a "cost" for withdrawal, such as adopting even a negative tone of voice or posture with a potential or actual participant.

My point is, I am biased. I realize that this withdrawal/refusal bias is not quite appropriate when it comes to medical treatment as opposed to behavioral (or medical) research. So I try to keep that in mind as I turn over the story below about a mother who refused two (related) types of Lupus treatment for her minor daughter. Still, I can't help feeling that the choice to bring neglect charges here was a poor one. How much information was she given? And most importantly, were the medical providers aware of and sensitive to the reality of this woman's distrust which was fueled by - if not entirely based on - the suffering her daughter was experiencing?

It's not the best written story. As with any media account, there is trimming and fluffing. I've taken out what seems to be fluff but I can't make up for the lack of information. Still, it's the only story on this case out there at the moment. It's a tragic situation, one I can't help relating to somewhat since I also have trust issues with medical providers which have lead to some very and I'd say inappropriately contentious encounters. I can only imagine I'd be the same way if I had a kid who was sick.

I present the information in the article as food for thought. The issue being not whether the mother's judgment was correct or incorrect but whether the issue of patient or patient advocate/guardian trust could be better recognized and better addressed in such situations.

Excerpted from the Hartford Courant
Girl In Medical Dispute Dies
By Hilary Waldman and Colin Poitras, Courant Staff Writers
March 12, 2008
Chelsey Cruz, a 15-year-old who ended up at the center of a custody battle between her mother and the state that left each side accusing the other of harming her, died suddenly Tuesday.

The state Department of Children and Families last August filed charges of medical neglect against the girl's mother, Kimberly Castro, and took custody of the East Hartford teenager.

Castro had disagreed with three teams of doctors who treated Chelsey for lupus.

DCF stepped in following a complaint by child welfare authorities in Massachusetts. Chelsey at the time was being treated at Children's Hospital Boston.

Doctors from Connecticut Children's Medical Center in Hartford and Yale- New Haven Children's Hospital had filed complaints with Connecticut authorities, contending that Kimberly Castro was hurting her daughter by objecting to the treatment they recommended. Those charges did not stick.

After the Boston complaint, however, DCF placed Chelsey in the custody of her grandfather, who agreed to follow the doctor's orders. Both sides were awaiting a final ruling in the case when Chelsey died.

In an interview last autumn, Chelsey, an honors student, said she felt her mother was acting in her best interest. She said her biggest wish was to go home and be healthy.

"I feel kind of angry that I'm not able to be with my mom right now," Chelsey said in October.

Michael Perez, Castro's court-appointed lawyer, said Chelsey was taken to Connecticut Children's Medical Center Tuesday morning and probably died of cardiac arrest caused by sepsis, an overwhelming infection that can shut down the body's organ systems very rapidly. Perez said an autopsy is planned to determine the exact cause of death.
...
The dispute over Chelsey's care began almost six years ago, when doctors at Connecticut Children's Medical Center diagnosed the girl with lupus, a disease in which the immune system mistakenly attacks the body's healthy tissue.
...
Chelsey, her doctors said, had a serious complication called lupus nephritis, which can cause devastating kidney damage. They prescribed steroids and an immediate intravenous infusion of Cytoxan, a drug approved for cancer treatment that has shown promise in stopping or slowing immune system attacks in lupus patients.

When Chelsey continued to be wracked by complications, including abdominal pain and diarrhea, her mother lost faith in the doctors at Connecticut Children's Medical Center. Castro transferred Chelsey to Yale-New Haven Children's Hospital. There, the doctors found that Chelsey's kidneys had failed.

They blamed the lupus, but Kimberly Castro blamed the medication.

At Castro's request, the Yale doctors switched Chelsey to a newer form of treatment. But that, too, caused serious side effects and Castro objected to that, too. That's when Yale called DCF, accusing the mother of medical neglect.

After an investigation, DCF determined that Castro simply no longer trusted the doctors. As a compromise, DCF and Castro agreed that Chelsey's care be transferred to Children's Hospital Boston.

But it wasn't long before the same fight Castro had at Connecticut Children's and Yale broke out in Boston. Castro did not want any more Cytoxan or the alternative drug, Cellcept. The drugs, she said, were killing her daughter.

After a lot of angry back-and-forth, an order of protection was signed in Massachusetts in late August. Until Chelsey was returned to her grandfather's home in East Hartford, a uniformed guard was posted outside her room in Boston to prevent Castro from taking her daughter out of the hospital.
...
Perez said a Superior Court trial on the medical neglect charges had just concluded in February and that Castro was awaiting a ruling. And he said, she remains convinced that the strong medications were too much for her daughter.

"Ms. Castro strongly believes there is a connection between the drugs that were being used and the results today," Perez said.
....

the WTF files

From a local paper this week:
School administrators locked down two schools Thursday afternoon as five middle school students were rushed to hospitals after swallowing various pills. A sixth student didn't require hospitalization.

The students showed up in the nurse's office after lunch complaining of feeling sick after they took over-the-counter and prescription medication, Police Chief Mark Palmer said.
...
Officials say the pills likely came from students' homes, and six students took about six pills. None lost consciousness, police said.

The pills were aspirin; Naproxin [sic], an anti-inflammatory; Xenical, a diet pill; and tetracycline, an antibiotic.

Aside from seeing the obvious reminder for parents to keep their pills out of reach of children (and that may mean locking the pills up), and feeling a bit of relief that the kids didn't get into something like dad's valium or mom's zoloft, this story leaves me wondering....
What on earth were the little tykes hoping to accomplish with this particular cocktail? Were they looking for that elusive but excellent tetracycline high?

fuel for the fire

Another Lyme headline. The part that spooks me is the third paragraph.

(excerpted from the Stamford Advocate)
Medical board approves probation, fine for controversial doctor
Associated Press
December 18 2007
HARTFORD, Conn. -- A New Haven pediatrician who has been praised by patients but criticized by the medical establishment for the way he treats Lyme disease was reprimanded, fined $10,000 and placed on two years probation by state regulators Tuesday.

The Connecticut Medical Examining Board voted unanimously to impose the sanctions after concluding that Dr. Charles Ray Jones violated care standards by diagnosing Lyme disease in a boy and his sister and prescribing antibiotics based on a phone conversation with their mother, months before he examined them in May 2004.

The board also found that Jones broke standards by failing to reconsider his diagnoses of the children after lab tests came up negative for the tick-borne disease, which can cause painful arthritis, meningitis and other serious illnesses if not treated promptly.

Board members further concluded that Jones was wrong to prescribe antibiotics for nearly a year without repeat exams and without any arrangement with another doctor, because the children lived in Nevada, to monitor for any side effects of long-term antibiotic therapy.

Hartford lawyer Elliott Pollack, who is representing the 77-year-old Jones, said he will appeal the board's decision.
...

Other things aside for a moment, I know it's hard but try, consider that part of the board's ruling was based on the finding that Dr. Jones "broke standards by failing to reconsider his diagnoses of the children after lab tests came up negative for the tick-borne disease". I thought that a Lyme diagnosis was supposed to be more based on clinical presentation than lab values. What crazy Lyme-loving website did I get that from? The CDC, among others.

Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migrans.

On the CDC Lyme website, this passage continues with a helpful link to the current, detailed recommendations on serological testing for Lyme. If you do click there, what you get is a report called "Recommendations for Test Performance and Interpretation from the Second National Conference on Serologic Diagnosis of Lyme Disease".

The Second National Conference on Serological Diagnosis of Lyme Disease was in October of 1994.

I'm going to let you all do the math. You'll do it faster than me. I nearly had to count it out on my fingers...good thing it wasn't much older or I'd have run out of fingers!

My point. There are two, or one somewhat bifurcated one depending on how you look at it. My point is that the CT board's finding engenders and perpetuates too high a level of confidence in serological testing for the clinician dealing with the realities of Lyme presentation. The board's level of confidence would be well founded if the testing had improved much in the over 13 years since the "current" test performance and interpretation recommendations were made. It has not. I wonder now as I so often do when I read the latest Lyme fueled controversy story (or maybe more appropriately, the latest controversy fueled Lyme story) - Can't we do better than this?

bye bye candy man?

Excerpted from today's Hartford Courant:
UConn Prescription: No Freebies
Doctors, Medical Students Urge Committee To Ban Gifts From Drug Companies
By William Hathaway
Courant Staff Writer

The University of Connecticut Health Center is debating whether to become a no-pizza zone for pharmaceutical sales reps.

Spurred by a national student-led campaign to ban drug company freebies, Health Center officials Wednesday updated doctors and medical students on a committee's work to create uniform policies on accepting gifts, fees and educational reimbursement from drug company marketers.

Students and some doctors who crammed into a small meeting room at the Farmington campus, in turn, urged officials to completely ban such gifts.
...
Medical schools such as Stanford, Yale, University of California-Davis, and Michigan have already adopted such bans, Fleg said.

hmosis

From Harvard Pilgrim Health Care's "Why Does Your Drug Require Prior Authorization?" page.

Why does Zyvox (linezolid) require prior authorization?
Zyvox is a very strong and costly antibiotic. It has been shown to be just as effective as other antibiotics currently available to treat infection, however because it is one of the few antibiotics shown to be effective against resistant gram positive infections, infectious disease experts caution that this drug should be used conservatively. The Harvard Pilgrim Prior Authorization Program helps to ensure that this drug is used only when medically necessary.

It's tangential to why I'm quoting Harvard Pilgrim Health Care's FAQs, but I have to say the statement that Zyvox "has been shown to be just as effective as other antibiotics currently available to treat infection" is so flagrantly misleading it's insulting to anyone with more than two neurons to rub together.

The relevance though is that my brother was denied his medication (zyvox) tonight when he went to pick it up from the pharmacy on his way home from the hospital. Two weeks inpatient and he's not sick enough for the HMO.

"Prior authorization" means he will spend hours on the phone tomorrow trying to get this cleared up. He'll have to do it himself because if someone tries to advocate for a patient, even a very sick patient, the bureaucrats bust out the HIPAA gags before you can even say "health care proxy".

So if my brother's got enough luck, tolerance, and energy to fend for himself with the HMO tomorrow, he might get the drug approved in time for his next dose.

I totally get not wanting people to hand out Zyvox like it's candy, but a vancomycin resistant MRSA pneumonia really looks like one of those situations for which Zyvox is the best thing going (1, 2) - better than the other antibiotics Harvard Pilgrim's website nebulously refers to.

Also, I've got to wonder...does it really need to be this hard for the doctor, the pharmacy, and the various departments (or rather, databases) at the HMO to get in the same chapter if not on the same page? It's not like we have to wait for the pony express to deliver the document with the diagnosis on it from the hospital way out East to the HMO head office....er, way out East. We have electronic databases, intranet, and internet. Even the slower connections and programs on poorly maintained 3 years out of date systems (what I hypothesize are used in many if not most medical contexts) are usually faster still than a bike courier at 3 on a Sunday morning in Boston. Point is, I'll bet if an insurance company had the proper motivation (i.e. business related) to facilitate communication between it's departments (e.g., that which handles inpatient care claims and that which handles prescription coverage), we'd see that info moving so fast you'd think it was magic.

Update 10/16/07, 7:12 PM. Hospital has faxed "the form" and the HMO is doing whatever it does which we would consider mulling it over. And my brother is going without antibiotics for two doses and counting.

A timely article

Since I was just writing about compliance (to medication regimen), Medea, and Large Marge, this seems to be an appropriate reading for the day. I'm supposed to be writing a lecture on hypothesis development and testing, but ow.

And my attention is less than razor sharply focused.

I've gotta say, after looking over the abstract, I find myself quite curious about the "pictorial blood loss chart" used in this study.

Also, I can't help wondering - where's the imaging man? Here I am looking at stuff on muh-muh-muh-My Mirena (see, it's not just the Macarena it fits with - it's a quite musically handy word) and finding a long term study on side effects of the blasted thing and it seems they didn't collect data on ovarian cyst formation in women using The Device.

Can I get a hearty wtf?

bitter pill

When I was taking doxycycline for my acute Lyme infection many years ago, I developed a serious aversion to it. I had to force myself to swallow each twice daily dose. So great was the desire not to take it that I sometimes gagged on it and had to spit out into my hand, take a moment to visualize that it was a large tic tac, and then pop it in for another go. I often forgot to take it when I was supposed to. There were many, many nights when I had to get up out of bed, eat some crackers, and take the damned pill because I had totally "forgotten" to take it before I brushed my teeth and settled down for sleep. How did I remember after I got into bed? I had finally taped a sign to my bedroom ceiling to remind me to take the pills.

Why was it so bad? Because within two hours of taking it, I would feel HORRIBLE. It wasn't an upset stomach. It's hard to describe...I felt like my brain had been scrambled. My head felt like I had taken a blow from a 2x4 right dead center on the forehead. My eyes ached. I couldn't stand light and sitting up or standing made me feel like I was going to puke and pass out.

This happened every single time I took a pill. The time frame on it might be off. It's been a while since I was on the doxy and I tried so hard to forget the details. Some of them will stay with me for a while I'm sure but stuff like "did it start in two hours or was it peaked and falling off by two?" is information I can and therefore do forget.

When I was on the IV rocephin a year later, I had another sort of odd psychological reaction. This one wasn't based in any physical aversion training. It was the creepiness of knowing that little port not far above my elbow was the leading end of a line that went smack into the superior vena cava. The exact placement of the end of the line was quite apparent to me since for a few days after I had it placed, every time I crossed my right arm over my chest - say to brush the teeth in the left side of my mouth - my heart would go "ka-chu-u-unk" instead of the usual "ka-thunk". I had them pull it back some. (Yeah, like I said, I'm that patient.)

Point is, I knew it was there and I sometimes had to think really hard about not thinking about it so I wouldn't get skeeved out. About the second week in, I noticed that if I successfully accomplished this goal, I'd forget about the line maintenance routine. So it's flushed twice a day, once after the drug and once again about 12 hours later. On the days when I'd managed to not be thinking overly much of my PICC and where it went, I'd forget to bring my supplies with me if I was out. It was sort of a catch 22 - think about it and fret but remember to be prepared to take care of it or not think about it and be so blissfully unaware that I got caught more than once without my syringes.

These days, when I miss a pill or forget if I took one, I can't help wondering if there's some kind of aversion issue happening. The ones I forget now have none of the obvious displeasures associated with the doxy or the PICC line, but there are two in particular which I consistently forget to take or forget if I've taken. Unlike my elavil, which I seem to hardly ever forget to take and never forget if I have taken, I far too often find myself standing there looking at the package of PPIs or bottle of NSAIDs in my hand and wondering "crap...did I take one of these already?" or realizing many hours later (usually when the symptoms get raging) that I can't remember having taken one.

I've considered that there may be some regularity to this pattern. The one which has worked the best and without which have an eventual visible, marked effect (weight loss) is the one I am good about taking. It's not a simple cause and effect thing though. I don't feel immediately or even directly better after I take the elavil. It's a cumulative thing on a much longer time scale than I would have thought necessary to induce such an association. So what's going on with the others then that makes them so readily forgotten?

I was thinking about this today after I got off the phone with a friend who's been doing chemo every other week for about many months now. She's been switched to a once every three weeks course now, but says it still sucks a bunch. I also thought of another friend who had to administer Hepatitis C treatment to herself at home (this woman hates needles) and my brother who's taken various HIV and psych meds, all with various side effects and the occasional adverse event.

How the hell do they face each dose?

pain in the ass

I read an interesting post over at Musings of a Dinosaur called Drug Seeking in Primary Care. In it, the writer discusses encounters with different types of pain med seeking patients. He makes an excellent distinction between "the patient legitimately seeking to form a new doctor-patient relationship for management of a chronic condition requiring controlled substances" and what are traditionally called "drug seekers" (but which more properly could be called "drug scamming addicts").


While looking over the responses to his post, I came across Cathy's Place, and her recent post describing a visit to her doctor's office where they had recently hung a sign in reception stating "Do Not Ask for Pain Medication". Cathy's initial response to the sign is similar to what I think I myself would experience were I to find myself face to face with such a notice. Reading her post made me consider how pain has been handled in my medical history.

Here's a patient perspective on just some of the problems presented by "drug seekers" (that is the "drug scamming addicts" kind). They take up time and resources which should more appropriately be used for patients who have a legitimate medical complaint or concern. Their habits, narcotic and interpersonal, can serve to establish or confirm any underlying health care provider approach of doubt or suspicion of patient complaints and patient interactions. In short, their behavior creates risks for compromised care of all patients.

But Cathy's post raises an interesting point. Given the acknowledged dangers (for providers and patients alike) of creating or feeding a narcotic addiction, it seems the general tendency would be towards caution - either zero tolerance type caution of a type the "Do Not Ask for Pain Meds" sign suggests or sensible discretionary caution, as seems to be described on Musings, where long term pain medication can be approved but only in limited circumstances, such as when a continuing, confirmed painful condition cannot be otherwise treated. And yet this is not the case. Not by Cathy's experience and certainly not by mine.

My own recent experiences with this come from both outpatient and ER care. I'll go with the ER one first.

I have migraines, had them since I was in my 20s. They had been mostly menstrual, and I had been taking Frova in what is apparently an off label manner premenstrually to keep them at bay. Last summer, they changed in frequency coming any old time of the month and sticking around for days. I made an appointment to see the doctor for a reassessment, and he increased the frequency of the medication. Then they changed in character. In addition to the photophobia and over sensitivity to sound, I had tingling in part of one hand, near blindness in one visual field of one eye, some creepy cognitive changes, and one episode of vomiting. I took my migraine meds and rested, waiting. It seemed to abate some a few hours later, so I got up and started making dinner. The usual dull rotten feeling of the pain came back and brought with it a novel sensation of a series of sharp lancing pains in the occipital/temporal area which were so intense they left me gasping for breath. I went to the ER. I went because I have the misfortune to have studied stroke patient case histories in my grad neuropsych courses, I'm over 35, I smoke, and I have a family history of cerebral vascular disease. Hence, I felt the smart thing to do was to make sure this wasn't something worse than a migraine.

In the ER, I got an IV, and antiemetic, and an offer of pain meds. They offered morphine I think, but remembering something about this possibly raising intracranial pressure, I asked for something else. I can't remember what they gave me, not morphine but possibly also not something which was a non-narcotic. What I didn't get was any imaging, which I found a little troubling.

Then there's the GI doctor. Good old fired GI guy. I came to his service under one of his colleagues after diarrhea and post-prandial intestinal cramping cost me about 20 pounds in less than a year. For a while, levsin and loperamide got the symptoms controlled enough that I was finally digesting the food I ate, regaining weight, and not in so much pain. Then the symptoms started getting worse again. I started losing weight. I went for a re-evaluation and ended up with the now fired GI guy. Fired GI guy's response was to prescribe Ultram. "Isn't that addictive?" I asked. "Oh no" he assured me.

Meanwhile, he worked me up as if I were a 50 year old man and found nothing which would explain the symptoms. Had I remained under his care and his recommendations, I would have been taking Ultram for the pain, a higher dose of loperamide and levsin for the the diarrhea and apparently quite rapid transit of food through my gut, something else for the nausea that I inevitably had when on a higher dose of levsin and loperamide, and possibly another drug for to increase my appetite so I would want to eat more even if eating anything caused pain and nausea.

Now to me, these treatment plans and decisions don't sound like they come from people who are worried about perhaps unnecessarily creating a drug seeker. The ER doc? How about a head CT? I know at the weetiny-ville community hospital I went to that night they may not have been able to do an MRI that night, but a CT could have happened. Instead I got "treat it and beat it". The GI doctor never took into account that endometriosis might have been causing or exacerbating an underlying irritable bowel. Rather than allowing himself to think of my whole body (or even proximal organs) in an attempt to find (and treat) a probable cause for the symptoms, he retreated to a diagnosis where the only option is to treat the symptoms.

In both of these cases, I went in looking for answers, looking for identification either to rule out something terrible or to ultimately (hopefully) treat of the cause of the symptoms. In both cases, happy drugs were the only answer I was offered. Sometimes the only choice is between the lesser of two harms - harming someone by allowing chronic pain to go unchecked or harming someone by making them dependent on a narcotic. This choice should be a last resort, one weighed only when other means or options have genuinely failed.

What I'm realizing in thinking about these cases in the context of the drug seeking patient issue is that too many times I've not had the assistance of doctors in ensuring that we've exhausted the other options. I've managed to skirt treatment which could result in my being labeled as or in my becoming a drug seeker (in the nicer or less nice sense) only by being a total pain in the ass - that is only by insisting on a higher standard of practice than these doctors were willing or able to give.

Gynecological diagnosis III

Continued from Gynecological Diagnosis II

The gynecologist I saw in 2002 specialized more in ob than gyn. After the lap, she told me she had left several sites of endo during the procedure. She told me she did not feel confident attempting removing them, particularly the one on my right ureter. She put me on birthcontrol pills, said to come in for a follow up a few months later.

A month later I called to talk about trying a new pill since the ones she prescribed were giving me morning sickness (no really). I was told she had left her practice.

Soon after that, I caught Lyme Disease. Bad luck and geography conspired against me I suppose - I had just moved to a county with the highest per capita Lyme rate of my state. I had the big old bull's eye rash and all. I mention it because it becomes relevant.

I eventually found another gynecologist through word of mouth and MUCH internet research. He does not do obstetrics, which was what initially interested me in him. I saw him in late January of 2003.

We tried progesterone, but to everyone's immense surprise, it gave me breathing trouble. At the time we didn't know it was the progesterone doing it. No. I had no idea it was even a possible effect of the medication, although I recall thinking once or twice "hm, that started in February, and I started the progesterone not long before that". But the breathing problem had not started suddenly. It came on gradually and worked its way up to where I could not talk or walk more than a few feet without feeling like I couldn't breath. I felt like I was drowning, like I could take breaths but wasn't getting enough air anyhow.

The chest X-rays showed "mild hyperventilation" and that was it. The new PCP I had dismissed it. I use that word a lot in this, I know. But it is an accurate word. Dismissed is what I felt, and dismissive is how he was. He knew I had had Lyme Disease, and I think - even though I showed him the picture of my rash and the western blot results - he approached me with caution because I continued to complain of fatigue, headaches, and strange pains in my hands and feet. It never crossed my mind these were symptoms of Lyme. I had in fact asked him to check my thyroid level since all three of my paternal aunts had thyroid disease. I figured fatigue, you know, could be thyroid. What I certainly wasn't thinking was refractory Lyme, or post Lyme, or chronic Lyme, or anything Lyme. However, it seems he thought I might have been simply by having "LYME" in my history and the temerity to not be feeling well in his office (it was my first appointment...shoulda known then and there). This made me someone to approach as if I were an idiot or crazy. Or a crazy idiot.

The breathing problem got to the point where I would have to break up lecturing to catch my breath (one of my jobs as a grad student is to teach undergraduate classes, discussion sections, and labs). I was in the midst of talking to some fellow grad students at school one day when the usual breathing issue started catching me up. I stopped and took a few breaths, deep ones as usual. Then a gulp. I didn't feel right. Then I felt like something kicked me in the chest, a hard sudden jerk and a sucking feeling. According to my friends, I blanched and then fell over. I only remember the feeling, disorientation, and then being on the ground. The whole thing happened really fast with all of the parts coming in rapid sequence.

I called the doctor and he said to come down to his office.

When he came into the exam room, he was in a mood. He was gruff and dare I say, cranky. We spoke about the breathing and he reminded me he had already done a chest film and it was clear. He brought up the issue of "somaticizing". I said "so you think I'm a hypochondriac?" He said, with irritation, "that's a lay person's term". I got pretty pissed off at this point. "Well I'm a lay person, so that's the word I use. They're roughly equivalent though, right?"

We went on like this for a while. At one point, he actually raised his voice. I raised mine back. He told me he "didn't believe in chronic lyme disease". I had never mentioned the words "chronic lyme disease". I had never even heard the phrase "chronic lyme disease" until he said it.

He ordered an EKG and stormed out of the room. While the tech applied the electrode patches, I started sobbing.

Prolonged QT interval. Nothing much.

On the way home, I was in an extremely dark mood. I was never certain if this was the progesterone or the "not chronic Lyme" (which turned out to be neurolyme, confirmed by a spinal tap - sometimes the oral antibiotics don't work, but that's another issue) but during that time period, I would get extremely angry. We all get angry, I'm sure no exception. This was different. It felt like I couldn't come down out of it. I was an experienced angry person and I had spent a good deal of time and money in therapy working on how to deal with that. By the age of 30, while I still got pissed off, I also could usually get myself out of it. During this time, I couldn't. I could only wait.

I was enraged on the ride home. When it finally dissolved hours later, it left me depressed and cold feeling. It's a simplification to say I "got over" how the primary care had treated me. I got over it enough. Sometimes I still think about mailing him an envelope full of ticks and then calling him and yelling "hey, what's that about chronic lyme now you a**hole!?"

I think what helped pull me up out of the emotional hole I was in was that I honestly wanted to be well, I had an extremely strong urge to be better. The fatigue was not ok. The developing other stuff like joint pain and headaches were not ok. I took these as being signs of stress (not neurolyme) which would improve when I had addressed the more pressing issue of the breathing. I can't do much if I can't walk and talk, right? So I went to a cardiologist, a pulmonologist, and I did research on my own.

In the end, I'm the one who came up with the answer. It turns out this hormone is used as a respiratory stimulant. As I understood it, it works at the central nervous system level, so you wouldn't see any changes in the tests my doctors did - except perhaps evidence that I was breathing too deeply, too much. Essentially I was hyperventilating all the damned time because my brain was stuck sending out signals there wasn't enough oxygen.

When I first saw a few articles (peer reviewed articles) about this use of progesterone, I asked the pulmonologist, a very nice fellow, about it. "Could that have any effect on what's going on here?" I asked. He assured me that it is used for sleep apnea to stimulate breathing, but not at my dose. I'm still not sure he knew what my dose was. It wouldn't be the first time a doctor misread a chart.

I felt certain it was the progesterone only after October. In early October, it was like the progesterone stopped working all at once. I had been on IV antbiotic for a month over the summer for the Lyme. During that time, I kept on taking the progesterone. I took it faithfully since it wasn't for birth control but for pain and endo control. I had no periods and very little pelvic pain during that time. But then BLAM. I was out in Michigan, where I had lived for some time, visiting friends. And I got a period - the first one in over 6 months. The flow was heavy and the pain was unbelievable. I had to leave a restaurant in the middle of a meal after nearly passing out. I spent the evening in my hotel room in searing super strong ugly pain.

I came home and told my gynecologist. And we stopped the med. Within about a month, I was breathing free and clear. I take this as empiric evidence that the hormone was the cause of the breathing problems. I wanted to send all my doctors a bill.

By December of 2003, I started to have GI problems again. Intermittent at first. I thought it was stress. I saw a GI doctor who recommended more fiber. In Spring 2004, I had another poop/puke/pass out, this time at dinner at a faculty member's house. That definitely topped boyfriend's parents' bathroom for most horrible place for this to happen. I started having diarrhea frequently. That GI doctor left for California. I saw another one in his practice, who said to stop the fiber.

As it turns out, and I'm skipping ahead here a bit, I had done something very, extremely dumb which may have had something to do with this return of the GI issues. I don't like to admit it, but it's part of the story so here it is. After stopping the first progesterone therapy in mid October of 2003, I had started a different progesterone type medication at my doctor's order. I was on it for less than a week when I started bleeding and bleeding and bleeding. This was not spotting. This was a torrent. So we stopped that too.

And then I avoided the Gynecologist.

That's the stupid part.

(to be continued...)

Gynecological diagnosis II

Continued from Gynecological diagnosis I

At the office the day of the follow up appointment, the receptionist said "routine exam?" I said no, it was not routine. I started to tell her the short version of the hospitalization story but she had shut the window.

A few minutes later, she opened it and said "The doctor had an emergency call to labor and delivery. He should be back soon." Over an hour later, I was ushered into an exam room. The nurse handed me the paper gown and told me to get changed and wait up on the table for the routine exam.

"I'm not here for a routine exam" I practically growled at her. "Oh, well, uh, ok" she said and left the room fast, understandably looking a little on the defensive from my rotten attitude and tone. It wasn't her fault. I knew that. But I was still pissed off.

After she left, I sat in the corner fully clothed, glowering and waiting for the doctor. When he arrived, he looked puzzled not to see someone on the exam table, sunny side up, waiting for him. He scanned the room quickly, finding me sitting in the corner. I saw his eyes shift a little once they found me. They took on a focus, an aspect that isn't usually there in the "routine exam" context, something personal. If life had sound effects, his would have been this.

He said "So what's going on?"

We went over why I was there and I explained I was NOT having ANOTHER pelvic exam unless it was necessary and I didn't see why it was necessary so he was going to have to tell me what the HELL was going on first. At his suggestion, we adjorned to his office. He sat behind his desk and used words like "endometriosis" and "ovarian sites" and "small amount of blood in the cul de sac". I had some idea of what he was talking about, but nowhere near enough to understand even what questions to ask at this point. He concluded by telling me that I probably would never be able to get pregnant. I realized even at the time this was an incredibly irresponsible if not plain old stupid thing to say to a 19 year old sexually active young woman.

Then he wrote two scripts and sent me on my way.

Back in my dorm, I called my mother. I read her the scripts and she told me they were for a diuretic and a psych med. I threw them out without filling them.

It's many years later now. I'm 35 and I just had my second laparoscopy. The first one, in 2002, confirmed the endo diagnosis.

In Spring of 2002, after exhausting the resources of my primary care physician (I found out over a year later that he'd been dealing with his own personal case of refractory Lyme Disease - which was why his office kept canceling his appointments at the last minute) and after having lost my patience with my grad school infirmary's health care providers, I finally went to my regular routine Ob-Gynecologist. She was one of the very few left practicing in my area due to a combination of the region being somewhat rural and the apparently quite high malpractice insurance costs in the state.

I wasn't certain it was gynecological at first. Having had a history of both GI and GYN problems, I guess I made the same mistake my doctors had made in the past. I assumed pain between my pubic bone and diaphragm was probably GI. Especially when that pain came with a heavy dose of nausea.

What lead me on the 2002 trip through the GI/GYN maze and eventually to that first lap was that I'd been sick for nearly 2 months. I had persistent pain in my right side, sort of in the middle. That's an odd way to phrase it, isn't it? But I say "middle" because the issue of latitude (so to speak) came up when the infirmary's nurse practioner ordered an ultrasound.

"A pelvic ultrasound," the infirmary nurse said on the phone "for right upper quadrant pain." Although I could only hear her side the conversation, I knew enough from calling in these test myself what kind of hell she was getting from the radiology department's scheduling clerk on the other end.
"Well, it IS a pelvic ultrasound!" she said into the phone. I said "not when the pain's above my belly button it's not..." She ignored me.

The nurse practioner and I hadn't hit it off. My opinion of her immediately sunk after she asked me "How much work are you missing because of the pain?" "I'm in pretty much every day, but I find myself walking to my building looking for where I can stop and puke if I need to. I mean, that's like how I get from the garage to the building, one trash can and bathroom at a time. I feel bad all the time, every day, and sometimes I feel even worse."
She said "It can't be that bad if you can get up and go to work."
I answered "I'm a PhD student working as a research assistant. I don't GET sick time. I have to go to work, so that's not a valid measure."

I've found that doctors and nurses really don't take that kind of tone or response very well. I resolve, every now and then, to find ways to temper my tone in such situations. I won't temper the terms, but I could at least try on the tone. Unfortunately, when I'm not feeling well, I'm not at my best. And when I'm not at my best, it's hard to implement that resolution.

The nurse eventually managed to order an ultrasound which would cover the areas of interest. She sent me off saying "it's probably just a stomach flu".

The ultrasound showed nothing. My follow up appointment with her ended with a diagnosis of "stomach flu". I left and made an appointment with my gynecologist - an appoinment which couldn't be scheduled until several weeks from then.

In the meantime, the pain persisted. Three things about how I felt concerned me deeply. One was where the pain was. It had started in my pelvis - quite acutely one day at breakfast. I was at Bickford's. I remember very well. I was eating an omlette, which I didn't make it through. I have occasion to look back on the days before that breakfast as the last few days I felt genuinely GOOD.

When the pain started that day, it was central and in a sort of column up, starting about 2 inches over my pubic bone but stopping abot an inch or so below my waist. Genuine pelvic pain. After a few days, it radiated up and around my side, nearly into my back, and there it had remained for months.

The second this that concerned me deeply was that I felt so baaaaaadd. I was constantly nauseous and run down, like I had the flu. I had an elevated temp, never reaching the standard for a fever but high for someone who's normally hanging out in the high 97 area.

And lastly, I was starting to fall behind in my school work. I would have liked to be as dismissive about this illness as the infirmary nurse, mostly because I was getting tired of feeling like the chronically sick girl. When the hell was I going to get better? It was very frustrating, it wore on me. It made me cranky and a little sad. I had never been a super active person, but I enjoyed walking, it was not unusual for me to take a five mile walk on a day off. Also, I was typically a rather animated and energetic person. And I am smart, verbally quick, and usually somewhat funny. I like to socialize. But it's hard to be your walking, energetic, smart, chatty, funny, sociable self when you feel so run down, sick to your stomach, and in PAIN all the time.

I had no idea pain could be so exhausting.

The day of my appointment with my gynecologist, I was in an immense amount of pain. I'd been taking ibuprofen in doses even my mother the old battle axe nurse would have disapproved of (she tended to see the maximum doses on most OTC meds as mere suggestions - except for acetaminophen), but I was barely able to lie flat on the exam table.

My gynecologist said she thought it might be the endo but that she couldn't be sure without a lap. I said, somewhat to my horror, "then do the lap." I needed to know and I needed this fixed. I could live like this, but I certainly wasn't going to be able to live well like this. I was 30 years old and, despite the occasional, isolated, and those days quite rare acute pain/poop/puke/passing out episodes, I was pretty darned healthy.

I took a stats exam the day we decided to do the lap. I did not do well on the stats exam. I ended up taking an incomplete in the class. This was not unheard of, but I had done very well in Stats I, and to take an incomplete in Stats II was something of a mark of shame in graduate school. Especially in my program, which was heavily analytical.

(to be continued)

House call

I'm sitting here waiting for my neurologist's office to return a call.

I called about 24 hours ago. I called again this morning. "Sometimes it takes up to 72 hours to return a call..." the woman who answers my call tells me.

It's been over a month since my insurance company refused to cover the off label prescription for migraines my doctor gave me. My doctor's office's solution to this problem? That I should come in for another visit. Nothing in my condition has changed since my last visit, except that now I have migraines so often I can barely find a day when I don't have one to drive the substantial distance to my doctor's office.

The only problem which necessitates my needing to get into the office is that my doctor and my insurance company have different opinions on how I can and should take this drug. Meanwhile I have insurance which covers prescriptions and no migraine medication. To me, this sort of defines the term "clusterf*ck".

So what do you do to remedy this kind of situation as quickly and cost effectively as possible? If I were to judge my options by my doctor's office staff's unwillingness or inability to work with me on this issue over the phone, it seems I have no choice but wait a month for an appointment, line up a ride in case it's a bad day, do the 50 mile round trip to his office, pay a copay that is 1.5 times my normal copay (since he's a specialist), and rack up charges for my insurance company to pay.

Doesn't it seem like there should be a simpler, cheaper solution to this?