picture this

I’ve taken to taking pictures of things like when my ears, hands, or face and neck (and chest) get red and hot.  And of my mouth, when whatever the hell is going on makes it red, spotted, and sometimes blistered.  It all started in 2002 when I had my (then) bf take pictures of my lyme rash.  It was huge and I thought “damn, you just gotta get a picture of that.”

That picture has helped me more than I could possibly have imagined when I took it.  When I took it, I didn’t know that lyme disease was anything other than a tick-borne infectious disease.  I had no idea that it was going to earn me long term effects, “post lyme syndrome” or “chronic lyme” or whatever the flavor/name of the month is depending on what side of the exceptionally contentious debate you’re on (personally, I favor “post lyme fucked”).  I never had an exceptional set of labs, some bands here and there on the western blot but nothing that fully met the CDC surveillance criteria (which is so commonly misused as diagnostic criteria).  And so this picture has been helpful.  “Are you sure it was lyme disease?” I have been asked at various first patient appointments.  And I bust out that picture and the response is always a resounding “yup”.

So, I had been trying to get pictures of my hands when they do that swell up and turn red thing.  Red doesn’t always come

picture of woman's hands with intensifying redness from knuckle to fingertip.

If it looks like it hurts, that's because it does.

out well in a picture, and swelling…well, how does the viewer know that my knuckles don’t always look like that or that my veins don’t always stand out like ropes?  But then there was the mouth thing.  In 2009, it was horrible so I took some pictures.  Again in 2010.  At my GI appointment, the doctor mentioned casually “but no mouth sores, right?”  Oh, mouth sores?  I got mouth sores.  Wanna see?  Voila!  Mouth sores.  On two dates, severity of pain correlating nicely with severity of how damned gross my palate looked.  I recently had occasion to show these to my primary care who was seeing me for what I thought was a returning thrush infection.  “This is not thrush.  I want this biopsied.”

Ok.  And at the endocrine appointment, while being grilled about what KIND of flushing I have, I said “you know what, next time I’ll take some pictures, alright?” and they said sure.  Last night, I had hubby take some.  Lovely red splotches on my face and, I hadn’t realized, neck, and chest.  Lovely.  No wonder nosey co-worker routinely asks me “are you ok?  You’re all red, like you’ve been scratching yourself.”

Next time I go back to the B.A.T.H. endocrinology clinic, they’d better get ready for a slide show.

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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.

probably, maybe

The results of my thyroid biopsy are in.  I probably don’t have thyroid cancer.  Maybe.

They were only able to get a sufficient specimen for pathology from the larger nodule, which does not have calcifications.  It was analyzed using Papanicolaou and H&E staining, says the report, and it was negative for the kinds of cancer you can see using that stain…i.e. morphological analysis.  They did not do a stain with immunoperoxidase, which apparently is how you check for calcitonin, which is how you check for medullary thyroid cancer….Which is the one I was most concerned about since systemic symptoms include those of hypercalcitonemia – diarrhea and “flushing” (as in overheating, turning red).  But it is a rarer thyroid cancer.  I suppose because of its rarity, it is not routinely checked for.

I think I handled this well though.  “We could do a lobectomy” the ENT surgeon said when he finally called me to discuss my results.  “Or we could wait and check back in on it in 6 months to see if it has grown or changed, maybe try another biopsy.  The likelihood that it is cancer is very low.”  He asks if I understand what he’s telling me and I say yes, that there is a kind of thyroid cancer that is routinely screen by the biopsy they did, and that the nodule they were able to get a good sample from was negative, which means it is not very likely that I have that kind of cancer.  I tell him that I knew there was more than one kind of thyroid cancer and that the one I was mostly concerned about was the one that causes elevated calcitonin levels, and I mention the diarrhea and overheating/flushing.  “Medullary thyroid cancer” he says.  “Yes, that one.  Would the tests they did on the biopsy sample have shown that if it was present?”  “No, not really, not unless it was a really good sample,” he tells me.  “Ok, then what I’d like to do is to see what my calcitonin level is and if it is not elevated, I’m ok with taking a conservative route and monitoring this,” I say.  “What was your calcitonin level?” he asks.  “No one’s checked it” I tell him.  And so we order a calcitonin level.

And we wait.