a rare heart condition

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?


According to my GYN, the ultrasound was read wrong. Or done wrong. Turns out it wasn’t Medea after all. It turns out this cyst is on my right ovary. And so I need a new name – Large Marge.

Marge is big and the whole thing is displaced, now sitting behind my uterus (which is, on account of it being tipped backwards, sitting on top of my bowel). I can’t imagine there’s much room back there. Poor gals. They’re all crammed in like sardines in a can, like clowns in a car, like adjunct faculty in a storage closet turned office.

We’ll look at it in one month, says my GYN, and at that time we can decide what to do. “In that case,” I told him “I’ll save my barrage of ‘why do I keep getting these friggin cysts?’ questions for then.”

What’s the lesson from this? BYO Films and not just the report. I think I knew this already, but as with so many other lessons in life, I have a less than steep learning curve.

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 2×4 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?

we go together?

I was looking up vitamins, looking into what’s out there for doses, routes, and whatnot. This stopped me in my tracks.
Buy this item with Home ~ Dixie Chicks today!

And I’m thinking, wtf does a B12 sl supplement have to do with the Dixie Chicks? Do 9 out of 10 doctors whose patients listen to Dixie Chicks worry that their patients have pernicious anemia?

I wonder now what if I look up calcium supplements on Amazon will I find them paired with Celine Dion or Shania Twain.

What I need

I never, ever imagined there would be a point in my life where I’d be wishing for hemorrhoids…

I got a call from the GI doctor’s office with my results of the various scans – probably Medea and not much else is my guess. The call came right in the middle of the second two hour lecture I was giving today, which ended at about five PM. Yes. Of course. Hey, at least it wasn’t Friday.

I realized while I was thinking about the above and my health in general this evening that what I think I need most right now is this…

…because you can never have too much “Box of Kittens”

Update: Medea has been declared a 4.8 cm simple functional cyst who needs attention in the form of more pictures in something like 6 to 8 weeks. I can’t help wondering if my mirena should be implicated as a suspect in Medea’s recent waxing.

Also, now that I’ve written the phrase “my mirena” I have the Macarena song in my head… “Aaay, my Mirena! Yikes!”

While I’m on the topic of a medical remix of the Macarena, do you think the scrubs the guy’s wearing in this macarena tutorial are a fashion statement or an indication of his profession? The digs, foolishness, and time for the recording certainly help make the case for 3rd year med student.

ready for her close up

Medea just can’t get enough camera time it seems. There she was, a big round dark blob on the ultrasound image, now essentially the entire ovary which is a bit of a new look for her. She needs to go on a diet.

I’ll wait for the report before jumping to any conclusions about the ovary to Medea ratio. From what I understand, round, dark, and regular is good – well good as these things go. I’m having this all faxed to the GYN and I’m seeing him in two weeks so we can talk about Medea and her recent enlargement then.

I gotta say, the folks at the imaging facility I went to for the CT scan and ultrasound were really nice. Aggressive prep aside, they were genuinely pleasant and human. Always a good thing.

(late) summer reading

A long chain of internet whatnot starting with some thoughts of Foucault lead me to a book called Under the Medical Gaze: Facts and Fictions of Chronic Pain by Susan Greenhalgh. Dr. Greenhalgh is a professor of Anthropology at UC Irvine.

A preview is available at Google Books. I’ll let you know what I think after I get it from the university library. It certainly sounds interesting.

Excerpted from the book’s description at the University of California Press:
This compelling account of the author’s experience with a chronic pain disorder and subsequent interaction with the American health care system goes to the heart of the workings of power and culture in the biomedical domain. It is a medical whodunit full of mysterious misdiagnosis, subtle power plays, and shrewd detective work. Setting a new standard for the practice of autoethnography, Susan Greenhalgh presents a case study of her intense encounter with an enthusiastic young specialist who, through creative interpretation of the diagnostic criteria for a newly emerging chronic disease, became convinced she had a painful, essentially untreatable, lifelong muscle condition called fibromyalgia.

Greenhalgh ultimately learns that she had been misdiagnosed and begins the long process of undoing the physical and emotional damage brought about by her nearly catastrophic treatment. In considering how things could go so awry, she embarks on a cogent and powerful analysis of the sociopolitical sources of pain through feminist, cultural, and political understandings of the nature of medical discourse and practice in the United States.

my little “friend”?

I think I should name the cyst on my left ovary. “M” names spring to mind. Martha? Or maybe Medea, seeing as it’s caused me some trouble. Yes. Medea it is.

I suspect Medea’s at it again. I had a pelvic and abd CT on Wednesday because, well, because I’m bleeding. Very lower GI bleeding in fact. Oh ok, I’ll stop pussyfooting about. I’ve been bleeding out my butt and not a little. I can’t imagine how that must be for guys who bleed out their butts. As a woman, I am somewhat used to seeing that much blood in the toilet now and then. Granted, knowing that it is coming from the wrong side is problematic, but I imagine the whole visual would have to be more shocking for a man. At the insistence of my new primary and my sister, I finally made an appointment to see a new GI doctor. They seem ok.

The rectal exam showed no fissures and no ‘rrhoids (as a friend of mine used to delicately call them), but I had a very painful external pelvic exam. This is not unusual, I explained to the nurse practitioner who did the exam. I’ve been having daily pelvic pain for a couple of years now. I wear lose pants and skirts. It helps. And providing it’s not the dropping me to my knees pain that sometimes flares up, I can deal more or less. Currently, I am assured as I settle into my IUD, I’ll feel better. It’s better, but it still hurts.

The nurse at the GI office was feeling a little uncertain about the pain. I don’t think my adding in things like “hey you have diarrhea every day for 2 years, you’re probably gonna bleed out your butt” reassured her.

I was really expecting the CT to be negative. I truly was a bit taken aback when the GI doc’s office called on Friday (of course on Friday) to tell me that the GI doc wants an ultrasound for a “pelvic cyst”. I said “Uh, is it gynecological?” The woman on the phone was evasive.

While I am not 100% satisfied with this response, I do understand the need for it. Imagine if the call had gone like this instead:
“Hey Ms. Hygeian, this is GI doc’s office calling. Your CT showed a pelvic mass. Oh don’t worry, it’s probably not a tumor but the doctor would like you to have an ultrasound to make sure, ok?” That would alarm most people. And I get that.

However, if this is Medea, I don’t think we need to give her more face time than she’s already gotten. She’s been there for a while. Medea’s been such a pain in the ass, or rather side, that at my pre-lap appointment in May, I told my GYN to please take the whole friggin’ thing, ovary and all, if it looked even a little ugly. I was told they like to leave as much as they can, the whole thing if possible. Apparently Medea didn’t look too ugly to them, and so she remains. At several pelvic exams before and in the one since the surgery in June, someone has always remarked “hey you’ve got a cyst on your left ovary.” And every time I say “Yes, this seems to usually be the case…” (or similar).

The lack of alarm from the GYN people seems to suggest that Medea is nothing to be concerned about. Right? Not that I know it is Medea, but I do strongly suspect it is. I think I also hope it is. Because while the diarrhea and pain suck, the thought of a mass which is not Medea sucks a lot too. I do realize that telling myself it is Medea is a way of making myself feel better about that concern. I’m quite aware of that. But I’ll take my strange comforts where I can get them.

Medea has freaked some folks out in the past. I had a pelvic exam many many years ago at a primary care doctor’s office. She felt Medea and sent me off for a stat ultrasound. Within minutes of the exam, I was careening down the highway chugging as much water as I could get in.

So when I asked “Is it gynecological?” on Friday, I was asking “Is it Medea?” because I’d like to put them in touch with the GYN if it is and they can chat about whether or not I really need this ultrasound. Because ultrasounds kinda suck a bit, and really, who needs unnecessary suck? Not me.

While all the online stuff says ultrasounds are not painful, I think that they should add the caveat that drinking and holding that much water for an hour is at least quite uncomfortable. Add in a cold waiting room and it can become painful, not necessarily highly but quite unpleasantly. It’s going to be a lot of water. This imaging place has very ambitious preps. I am to drink 48 ounces of water an hour before the ultrasound and hold it until the exam is over.

So….we’ll see on Tuesday. Or rather, they’ll see on Tuesday. I’ll probably know on Friday (again).

e = mh2

Where m “mood” and h is the constant for “health”.

I found a very well phrased summary of why it’s hard to have, make, or keep friends when you’re dealing with an energy sucking illness. It’s on Abide, a blog by sbpoet. Here’s a small sample of her post.
And for the person who is ill, friends are seen in a new light. When energy is severely limited, one cannot afford relationships that exhaust and do not renew — even if these relationships were enjoyable when energy was cheap.

Of course a poet would be able to turn this phrase so well. I remember back when my energy was cheap too. An image instantly springs to my mind of a teen standing in front of the refrigerator, door wide open, while he ponders – at length – whether he wants a glass of orange juice or lemonade. This was how I was with my energy before.

It’s not an exact analogy though because one’s own personal energy is not like power from the electric company. Carefully conserving it in my 20s, always having been sure to close the door to the fridge while I made the moment to moment daily equivalents of beverage decisions, would not have resulted in my having any more at my disposal now.

Still, I sometimes feel like I squandered what I had.