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.

Not smoking

Why am I not smoking. Because I had a cold which went immediately into my chest. I don’t normally get that. But this time I did. And the very same day I was realizing the coughing fits were increasing and I was feeling distinctly unwell, unbeknownst to me my little brother was in an ER in Massachusetts with a rapidly developing atypical pneumonia.

Turns out little brother has a MRSA pneumonia. It’s scary. He wasn’t sick before this. Just BANG, MRSA pneumonia. He is HIV positive but his T cells are pretty decent. Perhaps they’ve been looking at the wrong T cells my sister the lab assistant says. I don’t know my T cell from my B cell, so I’ll just wait for my brother’s next HIV update, which won’t be for another month or so.

Regardless of where his immune system is at, he is damned sick right now and I’m his health care proxy. Moreover, I’m his sister. I want to be able to be there, I mean really physically there. It sucks to be that sick and alone. So not wanting my chest cold to turn into something which would lay me out in bed for a week, I decided I’d try not to smoke.

Thus far, it’s been 8 days since I had a cigarette. Sometimes I really want one. Then I start coughing and this shit comes up, or I call my brother and hear him gasping into the phone like he just took two flights of stairs in three leaps and I don’t want one so much.

He’s doing better. Not well but much better than he was. He transfered out of Babyfarm Suburban Hospital on Wednesday of last week, he came off the O2 Friday, and the team who’s covering him over at Man’s Best Hospital had been talking of sending him home early this coming week until the pleural fluid culture came back today. We don’t know what’s in it yet. We only know the 4th year popped in with just enough information to make my brother uneasy and to confirm my call that this was the start of the Discharge Cha-Cha (Let’s go! cha-cha-cha Woops no! cha-cha-cha)

Odds are he’ll be recovering down here at Chez Hygeian if he’s discharged this week since Nurse Mom went ahead with her elective surgery on Friday, recovery from which doesn’t allow much in the way of ambulation for something like two or three weeks. And Mr. Nurse Mom is an overgrown baby who’s ability to take care of even just himself, the pets, and Nurse Mom while she recovers is quite doubtful.

So I figured it’d be best to at least TRY to keep up the nonsmoking. God knows my brother’s not going to need smoke in those beat up lungs.