bad cop, other cop

It’s been a while since I posted.  busy busy busy at work.  But I’m through the worst of it and in fact don’t need to go in to work today at the crack of dawn hours I’ve been keeping since late September.  And finally, work has approved hiring me an assistant.  A very part time, “casual” assistant but one nonetheless.  She’s smart and agreeable and I’m happy to have her even for just a little bit every week.

The medical stuff.  When we last left off, I had asked for a serum calcitonin level since I have thyroid nodules, diarrhea, and flushing/overheating.  The calcitonin was 2, so not out of range.  The ENT doc recommends a follow up ultrasound in January.  I’m ok with that.  My neck isn’t.  Two nights ago, it started the stabbing pain that I now know (from the biopsy) is right around the area of that little, microcalcification containing, hard to biopsy nodule that is apparently practically on top of my carotid.  Nothing for that pain, other than to smush the pillow into my neck until I can barely breath and wait for it to abate.  Coughing, sneezing, straining all makes it hurt more.  Currently, it is quiet.  Please stay that way.

I had a GI appointment some time back now in which my primary asked them to consider carcinoid.  Apparently that’s another pooping/flushing thing.  GI said that she thought I should see endocrine and set it up.  And off I went to endocrine, again, last week.  I took my husband into the exam room with me.  And, as he put it, we played “bad cop, other cop”.  It was necessary.  They were all ready to focus on the hypoglycemia again and I had to redirect them.  Carcinoid.  Can we look into that?  That’s why I’m here.  “But your chromogranin A was only mildly elevated.  You’re on Protonix.  PPIs can do that,” I was told.  Ok, so would the PPIs account for the diarrhea and flushing?  No?  Right.  As I said, can we look into the carcinoid thing?

I got a bit surly with them, them being the fellow and the attending at the current B.A.T.H.  How long have I had these symptoms?  Diarrhea since 2004, flushing since 2009.  “So that’s a long time…” the attending says.  And if you look up carcinoid tumors, one of the things you will find is that most patients who have them have a long time between initial symptoms and diagnosis.  We’re talking years and years here, not months and months.  So can we look into the carcinoid thing?

And so we are.  More 24 hour urine, fasting blood tests.  Then following up with endocrine, who will likely dismiss any levels that are not outrageously out of range.  But I have my primary who had said on two occasions now “I’ll send you for a scan if I have to,” because he’s convinced that there’s some kind of nasty secreting thing hiding out here somewhere.  It was disappointing that the very evident thyroid nodules were not the thing (disappointing because it would be nice to have an identifiable culprit that explained two of my most troubling daily symptoms) but I trust him enough to not feel like I’m going to be abandoned if this most recent round of find the needle in the diagnostic hay stack turns up bust.

For people who don’t get why it is so important to have a (somewhat) unifying diagnosis, consider disability accommodations.  I’m currently filling out paperwork at my job for this.  And in it, I am asked to list my “conditions” with some explanations of them and then, based on those and my job tasks/description, request accommodations that will allow me to do my job (or do it better than phoning it in).  The list of conditions is lengthy and is more a description of symptoms or symptom sets, e.g. “chronic fatigue”, “orthostatic intolerance”.

My job in filling this shit out would be much simpler if I could just put “X” instead of “A, B, C, D…” under “conditions”.   It would also make answering the “so what’s wrong with you?” question so much easier.  I’ve come to truly hate this question, not just because there is no single answer and this plagues and dismays me on a personal and functional level, but because people expect a single answer and when they don’t get one, it highlights the ease and magnitude of social invalidation of the cumulative impact of my various “conditions”.  I’m thinking of just making shit up because I find that the people who ask are pretty ignorant about medical stuff.  I.e. they have no idea that “orthostatic intolerance” is a symptom and not really a diagnosis.  I already do this with my joint pain.  I tell people who ask (when I can’t take stairs two at a time in bounding leaps) that “I have arthritis”.  Technically, I do not.  I have arthralgia, which, again, is a symptom and not a diagnosis.  But you know what?   They don’t know and they don’t care, not to the level of needing to hear the difference.  But I can’t do this on a disability form.  So off I go to catalog the fiddly little details of misery in a way that, I hope, will make sense and be legitimate to HR.

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  1. badges? « Final Trick

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