i have never heard of this diagnosis, so at first, i didn’t really know what to expect. i didn’t have time to look it up either, so i went to her room with a knowledge so basic, i was a little embarassed. i mean, my knowledge was just based on my own basic definition of the diagnosis.

P has stiff person syndrome.
stiff. that means not relaxed.
person. that means the patient.
syndrome. something that summarizes her symptoms.

i wasn’t that shocked to see her toes and fingers contracted, overlapping and literally so stiff. i kind of expected that. her pain was expected too, but still, her extreme frustration to the point of crying when the meds were not yet due, was difficult to watch.

i do understand the doctors’ inhibitions to follow exactly what the patient said, but sometimes, this line of thinking is questionable to me. i am not saying that it is true all the time, but there are a lot of times when patients come in with a rare illness, and i think it is unfair not to listen to them just because they are asking for meds that resemble the requests of a junkie.

take P for example. she was diagnosed with this rare neurological auto immune disease in 1996. when it is not flaring up, she functions normally just like me. when it flares up however, she is in excruciating pain and her whole body is so sensitive to any stimulus, that she has learned the only way she can cope with it is to be sedated.

so, for the times she had been in the hospital for the flare up, for almost 12 years now, this was how she was managed:

ativan 1 mg IV, dilaudid 2 mg IV, phenergan 25 mg IV. all given at the same time, every 3 hours.

i know. an experienced nurse will turn the light bulb on right away. the judgement will come easy. after all, the said treatment is a very clear picture of a demand every junkie’s dream is made of. i assume that’s how the docotrs feel too. they ordered only phenergan and dilaudid, the requested dose, but every 4 hours.

i don’t know. maybe i’m gullible. but based on her history, this was not a patient who was in and out of the hospital every month, just for the high. i don’t think it was possible for her to fake the whole thing. if she was faking it, well, she might as well grab helen mirren’s oscar. i’m just saying…maybe she knew what she was saying, and after seeing her with lesser doses and farther frequency still crying in pain, maybe it was time to believe her and not let her suffer.

to make the short story long, i believed her, and told her i will talk to the doctor about increasing the frequency of her meds. as expected, my pleas to the on call doctor was in vain. not only that he didn’t want to overrule the attending’s decision, but i also sensed his nonverbal doubts about the patient’s honesty. i felt bad i gave up, but i had no one to blame, i did my part. the whole night, hearing P’s cries for an hour before the meds were due, i was irritated with the fact that doctors decide what they decide, because let’s face it, they don’t deal with the patient face to face for 12 hours. how easy is it for them to say “tell her that’s the most we can give her, and that’s that.” sometimes, i wonder if they will say the exact same words if they were asked to stay at the patients’ bedside and watch/listen to them cry.

i hope i am not making it look like doctors are heartless. i will never make that generalization. what i’m actually saying is, i wish that sometimes, they take the nurse’s assessment and opinions for what the really are and trust that our suggestions are wise and based on good reasons.

another difficult part is, some doctors listen to the patient enumerate their tried and tested treatment plan, but they don’t tell the patient upfront that they will not follow it. the poor patients, convinced that the treatment plan is settled, expect the exact enumerated thing, only to find out from the bearer of bad news (read: the nurse) that “no, the doctor did not order that.” so often, the poor nurse, aware that it is not his/her fault, still stay with the patient to take in all the gripe, blaming how the system sucks the whole time.

we do what we can do most of the times, but sometimes, even THAT, is not enough.

i went home feeling like i lost a battle, but what can i do? the next day, i was off. i talked to the nurse taking care of P just to check on things. i found out the attending eventually followed P’s treatment med request down to the letter. she told me P was asleep most of the day, which was what she wanted, and might be out of the hospital when i go back to work tomorrow.

to make the long story short…at last, a happy ending. i’m glad.

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anyway, you probably noticed. i finally caught the twitter bug. feel free to comment on my senseless musings, or to follow me if you want to. i am following people i know, and i hope you don’t mind. email or tell me in the comment section if you don’t mind being “stalked”.

as always, thanks to shane for setting the twitter thing up, and for hooking me up at healthcare today. and, thanks to beth over at pixel RN, for the help and for “rubbing off” the bug on me. i’ll blame her if i get addicted to twittering. just kidding! :)