Sunday, November 18, 2007

I need a second opinion, even if I am a nice patient

In the next week, I did as Dr. P suggested. I took my aspirin, but not the Valium. Over the next week, the dizziness went away completely. I would have moments when I would list unexpectedly, like a tree bending in the wind, but that was bearable. The speech was still pretty bad. Even the people at work were beginning to fill in the blanks when I could not get a word out. I took to touching my nose, like I was playing charades when someone got the right word. I was still dropping things and stumbling. The left side of my body ached and felt swollen, but I was no longer getting anything new, symptom-wise. I was getting used to coming home from work and going to bed.

Sort of.

A week after my blood draw, I got the news from Dr. P. All of the tests were normal, but she said that the marker for lupus was raised, slightly. It was out of the normal range, but not a lot -- based on that number alone, she was hesitant to diagnose me with lupus. She said it could be almost anything -- atypical MS, a brain infection, a different connective tissue disease ...

We had a nice chat about what I was supposed to do from here, and she basically said that I should not worry. I could taper off the valium over the next two weeks, if I wanted to. I confessed that I had not taken it at all. She laughed, but said that if I had taken it, I would not have been so anxious over the week. (I had called her office more than once, but the lab people had not sent the results and they needed to be asked to fax them over.) I told her that even if I did take the medicine, my mind would be anxious, even if my body was relaxed.

She gave me her cell-phone number and said I could call her at any time and to call immediately if I had any symptoms of lupus and she would start treatment right away. I told her thank you very much. She gave me the name of a physician in my area to call, saying that they had talked over lunch and that he would see me on an emergent basis, especially as I was a nice patient.

Oh! I said. Thanks!

She laughed and said that, although I was a nice person, what she meant was that I was a nice patient. Which is different. She meant that I was diagnosable. That I could be treated successfully.

Although only people who actually know me are reading this *waves* -- in case someone, somewhere ever does read this who does not know me, I work in a mental hospital.

One of my newer patients and I were talking the other day. He is relatively young, bright, articulate, a little manic (in the bipolar sense). We were talking about his behavior on the unit and he was saying that he was trying to be a good patient. In some ways, this is a good idea. A good patient is one that causes the staff no problems -- no demands, no headaches and basically takes any crap that is shoveled out to them.

But part of me really hates it that being invisible is considered to be a good thing -- that it is seen as progress to be passive and keep one's head down. So we discussed it, seeing the reality of the situation but also talking about whether that was a legitimate goal. So when I was deemed a nice patient, the reality of my situation hit me, yet again. If I have some chronic disease, I will be a patient.

Being a patient requires that you take on a certain set of characteristics -- being told what to do and following instructions. I am not really good at this. At all. I don't know how to be a good patient. I wonder how I am going to do at being a patient if I have a long-term condition.

This sux.


Rowan said...

Ah Bob! The invisibility issue. You raise a topic which always puzzled me as a student when reading about behaviour modification techniques: the not exhibiting a behaviour as a goal in itself. Have always wondered that if a feeling which precipitates a behaviour is not addressed, but just the way it manifests, is it just teaching the person with the fear or issue ways of not expressing it? I suppose that techniques like relaxation and and teaching people to recognise negative thinking wouldn't come into the category, but maybe so, in some cases. I really do not know much at all about treatments in this field, so plese excuse my dunderheid lack of knowledge, but it is very interesting.

This ties in for me with what you said in an earlier post about sometimes needing people to be horrified for you about something that has happened. I know a psychologist who has told me she never reacts when patients reveal distressing trauma, but I think If I were a patient, that would make me feel at some level that my feelings were not considered valid.

Am so glad you discussed the issue of being a good patient in such depth with the laddie in your unit. Am sure it helped him hugely,made him feel valued and gave him a lot to ponder. You are a good Doctor!

As for being a good patient, I can only say I am not one. I have had a low-impact chronic thingy,and would read, with no background expertise, about side-effects and not take meds,or save them up instead of taking them, in case they went out of production, and I really needed them one rainy day.:/ But I always smile sweetly at appointments.

You have already been awarded the title of good patient, Bob, which allows you a little dissident leeway. You will bug them only for a split second, until your questions catch their interest! And you can keep yer virtual claymore at the ready, for any officious reticence you may encounter.

As you say Bob, it sux, and hope you get some answers and helpful input soonly, lassie.

The Singing Patient said...

I can relate to not wanting to be a good patient. in fact, often the pain in the butt paatients do better than the passive ones.
i think the happy balance is to be a participant in your health decisions, rather than just saying yessir or nosir.

Dr. Bob said...

Hi Singing Patient!

I went over to your blog -- I am looking forward to reading it. I looooovvvve Steven Chow too! Thanks for coming over.

The Singing Patient said...

hey dr bob
i set up goggle alerts for lupus day and lupus illness and i get notifications/ links once a day on articles containing those words. i would just put "lupus" but then you get every article about endangered wolves and anyone named lupus...
so that's how i found you!
great issue, and an important one.