hard to swallow

scale image of pill camera used in capsule endoscopy vs. U.S. nickel

PillCam...hey I probably can choke that down.

Down the hatch Thursday. On the plus side, the capsule endoscopy prep is Mag-citrate and not that horrible gallon of liquid plastic crap.  On the down side, I have to do clear liquids “after breakfast” Wednesday. Ha, well that’ll be coffee then clear liquids for the rest of the day because, on the advice of the NP at my last GI doc’s office, I don’t eat breakfast.

And speaking of things to swallow, I had a big helping of familiar but difficult disappointment today, fortunately there was some compassion to wash it down:  I had my follow up/sick visit (nearly all visits are sick visits for me) with my primary care.  Nothing conclusive.  Abnormal fecal fat.  Low BUN.  As reported earlier, the blood cortisol was a little on the low end but still in normal.  24 hour urine was all good.  I asked “what’s low BUN mean?” and he said he really wants that fluid deprivation test the nephrologist ordered.  “It might be diabetes insipidous ‘light’.”  Which is exactly what the nephrologist wanted to rule out.  My PCP asked how the specialists were.  “Were they all ok?  Do you feel like any of them need to be corrected or put back on track for what I sent you to them for?”  “I need to know – it’s my job to coordinate this for you,” he added when I sort of pissed around on whether they all were doing what they were supposed to and how I liked them.  Ok, unpacking that, what I said was “I don’t know.  I think they were ok – I tend to judge doctors more on the follow through, as in how they do if and when tests for the obvious stuff come back negative or equivocal.

Ok, they all seemed decent.  Cardiology was best – she was addressing the hypotension.  Hadn’t gotten the tilt table test, he’s going to make sure she got the results.  I told him that my impression was that endocrine took a sort of a “let’s wait and see”, i.e., it seemed EndoDoc wants to see if what and how I eat is setting off my blood sugar and if that’s what’s making me feel shitty.  “Yes, but I wanted him to look at why you’re hypoglycemic,” my PCP said.

I told the PCP that the nephrologist seemed a little aspergers-y and that I thought he was paying a lot of attention to the lyme disease – which I don’t like, but maybe that’s not reasonable of me.  The PCP explained that Lyme disease can have implications for kidney function.  Ok, I guess I missed that.  I do remember that the nephrologist mentioned something about that.  I guess when doctors start talking lyme sequelae, my brain seizes up.   I mean I sort of heard it when the nephrologist told me that lyme can do something to your kidneys or fluid processing….I think my brain just loaded and ran the scrip I heard so often from my last PCP in CT, who I’d go to when some new thing was rearing its head or when some old thing had gotten worse and who would do a couple of tests, refer me to a naturopath or a questionable specialist, then declare me “post lyme chronic fatigue”-y or “chronic lyme”-y if nothing came back remarkable, which unfortunately went with her then writing me and whatever the symptom was off.  This is how I come to have a chronic rash, for example.  Or the cycling intense fatigue, fevers, malaise (boy that’s a loaded term…I’ll write about it some time) that have been in high gear since early Spring 2009.

BTW, this was the huge fucked up history that poor 1st year resident had to slog through on Friday.  That history plus the bristly prickliness I have about how it and everything that’s come since was all handled by too many of my primary cares, including the one who hemmed and hawed on my initial lyme diagnosis despite this rash.

large E.M. rash on torso, lyme disease diagnosed.  ELISA equivocal, western blot positive IgG and IgM but not CDC criteria

my big fat lyme rash, Summer 2002

At some point in my visit today, my current PCP also apologized for all the tests and appointments.  I told him I knew what I was signing up for – but that this is why I hadn’t rushed off to have that fluid deprivation test done.

Back to the results of what’s been done so far.  In addition to the abnormal fecal fat, normal 24 hour urine creatinine and cortisol, as usual, some vitamin levels came back crappy.  D is low (again) and a couple of Bs were on the very low end of the range.  My magnesium could be better, but it’s in range.  Well, we’ll see how the capsule endoscopy goes.  And the fluid thing.  There are a few things pending, but they aren’t really make or break sorts of things – a couple of repeats and urine electrolytes.  I see that look on his face – the “I’m doing everything I can think of but fuck if I know what’s going on with you” look, and I’m spooked.  He’s not given me reason to think that he’s going to wash his hands of me, get all dismissive of what’s up (e.g. no vitamin therapy, no low dose corticosteroid) but still I felt that sinking feeling.

I’m reassuring myself by reminding myself (with the help of my husband) that if in the end my PCP can coordinate my care, thoroughly investigate any new and enduring symptoms, and treat the chronic stuff as it flairs, he’ll be head and shoulders above most of the doctors I’ve seen in my life, and whole body lengths above nearly all of the doctors I’ve seen in the last 10 years.  Trying to keep my hopes up here.  Realistically up.

Ah, and as for the vertigo/imbalance thing:  He referred me to a neurologist, whom I’ll see soon and locally I hope.  “The dysequilibrium you described does not sound like vertigo” he wrote in his note (which he gives me a copy of at the end of the appointment – I said I liked this guy, right?)  We discussed that it could be migraine in overdrive, in which case I need something more than a prophylactic med (elavil) for it.  And that alone warrants neurology, or as the PCP said “What do I know?  I’m just a bug guy.”  Hardly, but I get his point.

So all that’s a lot to swallow.  But as I mentioned, I knew what I signed up for and it’s nice to have some compassion to wash it down with.

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