Would You Like An Autoimmune Disorder With Your Autoimmune Disorder? (Part 3)

Previously on my screwed up medical life:

• Some crazy blood test results and intense stomach cramps landed me back at the doctor in August 2014
• She ran a bunch of tests
• Those tests revealed nothing

…And that was about it. There’s a pretty defined limit to what a PCP can do in our current medical system when working with diagnostics. After a certain point, they have to put their hands in the air and call in the specialists.

Since my *ONLY* symptoms were those mystery stomach cramps, my doctor referred me to a gastroenterologist. So, less than a week after I first went to her with the symptoms, I found myself in the waiting room of… duh duh duh… A Specialist.

I actually brought notes with me on this visit of everything that I could possibly think of that could be related to my eosinophilia. There was the Europe trip, and the weird flu thing that I seemed to catch at the end of it, the, ya know, Type 1 Diabetes thing, the cramps that initially were so mistakable for period cramps, the clinical trial… the list went on. Seeing a specialist was at once comforting and terrifying. Like, hey, I live in New York City and have access to some amazing doctors. If anyone can figure out what’s going on with me, it would have to be a specialist in a major American city, right? At the same time, though, it felt terrifyingly like “the end of the line”. Like, if this guy can’t figure me out, where the hell do I go next?

The very kind gastroenterologist allowed me to ramble on for fifteen minutes or so about what had happened. He pushed around on my stomach asking me to rate how “uncomfortable’ things felt (uhm… “medium” uncomfortable? “Medium-high” uncomfortable?), and then he marveled at how cool my Dexcom was. (It is cool, isn’t it?) He took a hundred notes on his computer and studied my charts, nodding sagely as though he was just a second away from piecing it all together. Then, he sighed, sat back, and prepared to speak.

And I prepared myself for the satisfaction of finally getting a neat and tidy answer to the question posed by my impossibly random medical issues.

“Well,” he said, “You’re a tricky one, aren’t you?”

Le sigh.

I’ve often wondered if you doctors like getting us “tricky ones”. Was I more “fun” for my doctor when I came in with glucose of 500 (DING DING DING! DIABETES!) or with eosinophils of 45% (Uhm… WTF?)? Do doctors like the challenge of unknown symptoms, unconfirmed diseases? Part of me assumes yes, but since this would literally be among my worst nightmares, I can’t really understand how one could possibly enjoy that.

He explained in no uncertain terms that if I weren’t a Type 1 Diabetic, he would absolutely assume that I had a stomach parasite. It would be the explanation for these kinds of numbers in almost any case. However, I had already done a stool sample as part of my PCP’s barrage of tests, and that had come back negative. Not that one negative test meant no parasite. He ordered another stool sample or two, but then he really let the hammer drop.

I’m a diabetic. That’s an autoimmune thing. Therefore it was possible/probable/likely that there was some kind of autoimmune thing at play. And it wasn’t gonna be as easy as “take some parasite medication!”

I remember how warped my opinion of this whole diabetes thing was at first. I’ve already admitted this, but when all my doctors speculated about whether or not it was Type 1 diabetes or Type 2, I secretly crossed my fingers that it might be Type 1. It would mean I hadn’t done it to myself, I wasn’t a fat loser, blah blah blah.

Guess what, you guys. When it comes to these kinds of interactions, like, the ones you have with your doctors, it would have been so so SO much better to have gotten Type 2. There’s so many reasons it would have been better to have gotten Type 2, of course; this is just one of them. But once you’re a Type 1 diabetic, you suddenly zoom to the top of all your doctor’s watch lists. You become high risk, likely to get other obnoxious things at any old time. If I had just gotten Type 2 Diabetes, Dr. S would have patted me on the head and sent me on my way. In fact, if I had gotten Type 2 diabetes, I most likely never would have met Dr. S at all. Because none of this nonsense would have even happened. The shame I used to feel when my doctors speculated about Type 2, I now feel – on a smaller scale, but I still feel it – when they start sentences with “Because you’re a Type 1 diabetic…”.

I hate my new high-risk, high-maintenance status.

If I didn’t like the first thing that came out of Dr. S’s mouth, I certainly wasn’t going to like the second. He gently informed me that the next step was probably for him to “get in there” to see exactly what was going on – which would require, in his words “some invasive tests”.

Scopes.

My readers under the age of 50 will probably not know what I’m referring to, now, and bless you for that. “Scopes”, in my case, meant a colonoscopy and an endoscopy – you know, that thing where the doctor sticks a camera up your butt and down your throat and then pulls away little pieces of your intestine and esophagus so they can be studied under a microscope. That thing that’s a necessary medical procedure for patients over 50, or 27-year-olds with type 1 diabetes and elevated eosinophil counts.

He began describing the procedure of “prepping” for the colonoscopy and endoscopy, as well as the actual experience itself, and I won’t lie, I think my brain kind of turned off. Instead, I found myself wondering what would happen if he just took a blood sample and discovered that my eosinophil count had, you know, like magically gone down on its own? That could happen, right? Maybe? Or like, maybe I could poop in another jar (I warned you guys, this narrative has way more poop than any of us would want), and they’d find like a dead worm in it and I could take whatever poison it is they make you swallow when you have little critters living in your intestine and we could call it a day?

You know you’re in trouble when you’re hoping there’s critters living in your intestine.

Dr. S had more good news! He had had a cancellation and there was an opening for the endoscopy/colonoscopy TOMORROW! Of course, it would mean I would have to run on home and start taking my laxatives, but he would be able to jump in right away!!

In my mind, though, I was already planning how cool I was going to play it when he took another blood sample and discovered my eosinophil count had gone down on its own. “No worries, Dr. S. I guess I’m fine now”

Uhm, you want to poke your tools up my butt tomorrow? Thanks but no thanks. I requested an appointment in a few weeks time and demanded the stool sample jar.

He took my blood and sent me off to the bathroom to get the sample.

You know that old saying about pooping on command? How it’s impossible? Oh, that’s not a saying? WELL IT SHOULD BE BECAUSE POOPING ON COMMAND IS IMPOSSIBLE.

…

So, I had a whole paragraph written there where those ellipsis are that discussed my experience collecting a stool sample at home and then riding my poop through the subway system to drop it off at the doctor’s office, but you know what? I’m actually gonna go ahead and censor myself here. Given how open I’ve been with sharing just about everything on this blog, I hope you can respect that this self-censorship is very much for the best.

Spoiler alert: the blood Dr. S took that day did NOT reveal that my numbers had improved. They were still bad – slightly less bad (out of the 40% range), but still bad. Bad enough that I definitely had to go in for the scopes.

And since we’ve all hit our maximum of Jessie’s-butt content for the day, I’m gonna stop here.