What to say?

My brother and I were talking about how difficult it is to put together a cohesive narrative, autobiographically speaking.  We were talking on the topic of job interviews (my sister’s currently looking, employed but not loving the job).  “I’ve gotten very good at this,” my brother said.  According to him, the last time he was in the E.R., the doctor taking his history told him he was amazed at how much information my brother had been able to get across.

I need this now.  Granted, my history is not quite as remarkable as my brother’s.  Little brother has HIV, HCV, a history of syphilis (oh christ how do you spell that?!), giardia, MRSA (skin and lung)…I think I’m forgetting something, and that’s not touching on the family/psych history stuff.  So mine is a little less hair raising – thankfully – however it doesn’t have short names.  So for each complaint, there is this long rambling crap that goes with it.  How do you boil this down?

I’ve been thinking about this because I have my first appointment with the potential new primary care doctor on Thursday.  I feel, as my brother would say, like a “hot mess”.  Maybe I should just write that on the history forms.  Dx: hot mess, 2002.  That’s about as good as “post lyme”.

The problem, ok, a problem with saying “post lyme” is that I have no idea if all the symptoms I have had since having Lyme are in fact part of the “post lyme” or something else.  Also, wtf is “post lyme”?  I mean, to too many doctors it seems to mean “Ah, I can comfortably ignore your symptoms because ‘post lyme’ is an ill-defined phenomenon at best and is not curable”.  But if I don’t say “post lyme” and instead list off everything with dates and progression, well, I’ll be there for a while.  Long enough to see the doctor’s eyes glaze over and the beginnings of the long white beard starting to twine down into the stethoscope.  And then there’s the not post lyme.  There’s the gynecological stuff.  The migraines I had before lyme but which maybe got worse after unless those head aches and dizziness spells I get now are not migraines but something post lymey, or not post lymey but something that just happened to start post lyme.

Ugh.  You’re starting to see the problem.  Throw in the intestine stuff too for good measure, why not?

My therapist suggested just presenting a list of the symptoms without trying to categorize them or cherry pick (my term, not hers) based on what I think they will think is relevant.  Let the doctor figure out what is relevant.  This was something she suggested with the GI doctor though, I’m not sure about how this will work in a less contained (i.e., “partialist”, as Dr. Dinosaur would say) context.

So.  Do I make a list?  I suppose I may.  I might also bring my handy “history of Dyspatient’s thyroid, rheumatological, and lyme bloodwork results” just for fun.  What I’m not doing is copying my entire record from 2002 (yes, I have it) and bringing it in.  It scares them.  And they don’t read it.  I will bring it by if this guy seems like a keeper.  And I’ll just have to trust that the doctor will give it a look through if he can stand to wade in.  Oh, if only the world of electronic medical records was here.  But that’s a whole other blog topic.

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  1. queenofoptimism

     /  June 8, 2010

    I think about this a lot, Dpt. (Is that an ok abbreviation?) The approach I took when seeing Neuro #4 was to mark everything relevant on the generic what-the-hell-is-wrong-with-you sheet but I did not put specifics. I let him ask. And as far as current complaint, I limited the scope – I put something to the effect of increasing difficulty with mobility. Again, I let him ask when this started and instead of going back to symptoms that appeared a long time ago, I focused on the past year and a half as that is when things shifted for me a bit in terms of symptoms. I especially emphasized the past few months at that time because there had been a significant change/increase. I only mentioned long ago past when asked

    I know a specialist appt is different than one with a main doc but perhaps starting with what is your most pressing problem? Or even saying it straight – I’m not sure where to begin. What do you prefer? I told Neuro 4’s resident to cut me off if I was talking too much about irrelevant stuff and he did and I thanked him.

    Overall, it worked better for me than previous appointments. I think mostly because I was focused and didn’t get all frustrated like I usually do. Does this make sense? Can I help you with some specific aspects of pulling your narrative together? I’m happy to be a sounding board for you though it sounds like you get great support from your borther which is effin awesome.

    I have high hopes for Thursday! Fingers crossed.

    • My brother is good. Most of the time. Last spring he had a bit of a fit, telling me he had “four deadly diseases” in a context that made it sound like it was some kind of contest. Whatever. He’s got a right to freak out now and then, he was having big work stress and was about to start treatment for Hep C. He *is* very helpful in the talking to doctors and commiserating about talking to doctor stuff. And in turn, I’m his health care proxy and I go kick ass when necessary. Much easier to do now that I’m not in grad school 2 hours away. I love the hell out of him. I always think of him as a kid too, even though he’s an incredibly articulate and dashing 6’4″ full grown man. To me, he’ll always be that kid who got crayons stuck in his nose and couldn’t pronounce “spaghetti” right.

      Thanks for the offer! Hell yes. So this guy has this UNBELIEVABLY detailed history form. Forms. I’m taking your advice on the “reason for visit” section, and in filling in the “current and past medical problems” section. I put all the DXs I actually have, and then I listed out all the shit that is “undiagnosed” other than descriptively. And I like the telling him to cut me off if he needs to bit. I need that. I’m wondering if I should even mention “post lyme” or just leave that totally off the table.


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