June 05, 2007

Lyme Disease-- again? Part 2

The recurrent headache on admission might have been a clue I missed, but the inability to spell and frequent startling -- as little as a knock on the door or a sudden noise or unexpected sight would cause me to cry out, my arms flying up in front of my chest -- did in fact make me wonder if I were experiencing a Lyme flare-up again. After all, that sort of startling was practically pathognomonic of neuro-Lyme, at least in my case. In other words, it was that single symptom alone that clinched the diagnosis in the mind of the first Lyme doc I saw in Greenwich, and since then it has been the single most reliable signature of a flare-up.

At first I thought I was simply nervous, after all I wasn't startling at everything the way I had at Y2K-- And the dyslexia was really pretty mild, and furthermore, well, I was taking the antibiotics religiously, so it couldn't be Lyme now, could it? I decided not to worry about it and concentrate on other things for the time being, wait and see if things got worse or better.

Meanwhile, they had weighed me when I first was admitted and finding me well under 94 pounds had put me on "inputs [food and liquids] and outputs" measuring the latter with a receptacle they called a "hat". This was supposed to be monitored for several days at least, and my weight taken daily, but after the second day it seemed that no one quite knew what anyone else was doing, with the result that most of the time the inputs were acquired only at the last minute, by asking me if I happened to recall what I might have had that day and several times the outputs were simply forgotten until the hat overflowed. On Sundays, everyone was routinely weighed again. Though I was supposedly on daily weights, in practice this had been completely neglected, for which I was thoroughly grateful.

The girl before me stood on the scale. "97" the nurse read off the meter. "Whoopee!" the young woman cried, "I weigh 97 pounds!" I wasn't altogether sure what this meant to her, was it good to be so low or good to be that high? It had struck me before that there was an enormous amount of attention paid to weight and appearance on this unit, especially on the part of the young women, but the older nurses were by no means unaffected or immune. Everyone talked about it, no matter the race or ethnicity, weight and being fat worried everyone...It didn't seem like a good situation, not for me.

My turn. The scale showed that I'd actually lost a pound and a half. Now this was mainly due to my wearing lighter clothing than upon admission, and to general dehydration, since I had not yet found a way to obtain enough liquid I could drink. I knew this to be true because my pee, collected in the hat, was brown. But the nurses did not know this and I could not exactly explain, what with the next person behind me ready to get on the scale.

The next day, T, a male nurse who'd made out my "care plan" with me (but mostly for me, since I scarcely had anything to do with it), came into my room. "You're off ins and outs," he crowed. I looked at him, asked a question with my forehead. Huh? "You weigh 97 pounds, that's why. How heavy do you want to get?" I knew they had confused me with the young woman who had been weighed before me and in an effort to be honest, tried to tell him so but he didn't seem to hear so intent was he on telling me not to gain any more...

This chilled me. Recoiling slightly, I wanted to write, but didn't want to write, unable to decide if it was worth saying anything more at all. Clearly this guy had his own agenda, nursing profession be damned. The truth was, I was completely appalled. The misunderstanding about how much I weighed only went in my favor, as it took some scrutiny off me. But T's comment, "How heavy do you want to get?", implying as it did that my weighing the supposed 97 pounds at 5'3 (or maybe taller; I slouch so I don't actually know how tall I am) was just right, that I found inappropriate and extremely unhelpful, not to say unhealthy. He seemed to be counseling me not to eat lest I gain "too much" weight, i.e. over his desirable 97lbs. In fact, he was suggesting precisely that, what else could he be telling me? But what gave him the right to dictate that or decide something so inappropriate?

Now, I may have difficulty with wanting to gain weight at all, but I certainly do not want someone with some authority telling me I ought to keep my weight down to a rigidly underweight status quo. He was a nurse! Surely he'd studied nutrition. Surely he must know the risks involved! I don't give a femtogram about his private desires and fetishes, when he came to work, he damn well better act like a professional or he had no business working in a psych unit. Jeeze--

I am not sure, exactly, why his comment so upset me, why it upsets me still. After all, I do not want to gain weight anyway, nor do I intend to go back to that unit or expect ever to see nurse T again. It just seemed so destructive to say such a thing, to make his personal sick preference known! The whole unit was like that: nurses all huddling behind the desk at the nurses' station, there being no back room to talk privately in, so they conversed openly about patients, laughing and mocking me or, and this I heard a lot, discussing their own weight problems and what diet they were on. This may have been going on more in the hallways, I dunno. I could not localize a lot of what I heard, because I was in my room, listening to people talk outside my room and had to guess from what direction the sound actually came. But there was a great deal of talk about so and so being fat or having lost weight or gained it etc and nothing at all about healthy eating or nutrition or exercise, except insofar as someone ought to take up "power walking" as a way to lose "that fat ass of hers."

This was definitely not the place to be for treatment of certain other problems! Moreover, the food -- and I'm not fussy, mind you, it is pretty hard to make a turkey sandwich so awful that I won't eat it -- the food there was abysmal, so much so that I reckon most patients do not eat it while hospitalized even on the medical-surgical floors. This cannot help assist healing. Studies have been done to show that when hospitals hire a chef and serve good tasting and nutritious food, food patients enjoy and actually consume, wounds heal faster, illnesses resolve quicker and hospital stays are cut short...But does this particular "top 100 hospital in the country" care about that? Evidently not, since it is a white bread, gravy, and processed, refined, canned everything that they serve, without variation, day in and day out. Lord help any poor teenaged anorexic who had the bad luck to be admitted there for treatment! It would be a particularly unhelpful and counter-productive place for her to stay. to say the very very least.

Well, as for Lyme, a couple of days later (I was still unable to make myself speak) Dr Gonzalez came into my room carrying a sheet of paper along with his glasses, which he put on, peered at the paper, then took off again. "I got a letter from your doctor, the one in New York, Dr L--- How do you say--? "

I wrote out the name phonetically.

"Yes, and he sent me back the information we needed for you to get your antibiotics. We cannot give you the B______ until you agree to an EKG but I want to start the Am______ today. Is that all right with you?"

I nodded. It was nothing new. Just the same thing I'd already been taking at home. So I thought. But when I actually got the antibiotic I learned that all this time I should have been taking twice the dose I actually had gotten. Somehow, somewhere along the line, someone had been confused about the dose and it ended up with me being given only half the amount prescribed. Aha! So, maybe it was Lyme after all. Maybe it wasn't my fault, my own weakness or something that I did or overdid or underdid that led to the hospital stay, but Lyme once again...Maybe I hadn't been on an adequate amount of Am_______ to keep the bacteria down. That would explain things, it would make things much more understandable. Maybe I didn't do anything wrong this time. It wasn't clear, but clearly there was that possibility...

Posted by pamwagg at June 5, 2007 04:16 PM | TrackBack


Since when is Am___________ given for Lyme? I thought that Do______ is the correct drug. Maybe that was the problem'

Posted by: Julia at June 10, 2007 10:32 PM

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