Good morning! Some of y’all have sort of hinted that you’re working under the delusion that I (more or less) have my shit together. I’m hoping the sordid tale that follows might clear these flights of fancy up for ya.
Yesterday was one of THOSE days that proves to yourself and the world just how “untogether” your shit really is. Even as I was blubber-shouting the words, “I’M A HEALTH ADVOCATE!” at my poor, innocent Neurologist (and no, it didn’t make anymore sense IN context than it does OUT of context. Yeah, it was THAT bad.), I realized that even though I encourage folks to talk to their Docs and advocate for themselves, I myself lack any and all brain power needed to act like a reasonable, intelligent person when dealing with them.
Over the last year (outside of the recent slew of bizarre glitches that’s landed me at Prompt Med or my GP’s office) I’ve not really “talked” much about my health. That would be because I lost faith. OK, to be more accurate, my Rheumy, Dr. Babyface, lost faith. His apparent conclusion that I was more bat shit crazy than actually illin’ left me feeling completely betrayed, abandoned, and basically what-the-fuck-ever about my own state of physical well being. THAT’S when I lost faith.
Ever since, I’ve pretty much taken the stance of ignoring it and hoping it went away/didn’t get any worse. (And I think we can all see how far THAT’S gotten me.)
So, when shit blew-up, I hit the interwebz, books, and talked to other Activist types about some of the weirder junk that led Babyface to his current level of ambivalence and everything kinda pointed to this cool little thing called Dysautonomia. (Basically, when your autonomic nervous system loses its damn mind.)
I’m NOT advocating self-diagnosis, but I AM saying it’s totally cool to do your own research and ask questions. Which is why I made an appointment with my Neurologist. To ask a LOT of questions. Which seemed like a good idea. Right up until yesterday.
Seeing as how I’m currently riding one hell of a wave of painsomnia, I was up at 3:00 AM. Sweet. Then our hour and 15 minute trip turned into a two and a half hour ride-of-insanity, thanks to the recent weather, an inconsiderate semi that decided wrecking on the interstate in the middle of morning rush hour was a good idea, and the suck-ass state of the Indianapolis roads. All of it amounted to me being 20 minutes late for my appointment.
(Door opens and Neuro flies in with white coat trailing in the wind)
Neuro- “We’re late today so let’s just get right to it. Why are you here.”
Neuro- “OK, what about it?”
Me- “Uhhhh…….do I have it?”
Neuro- “What make you think you might have it?”
This would be when I devolved into a blubbering, snotty nosed, runny mascaraed, pile of incoherency. My notebook of information and questions I wanted to ask? Never made it out of my bag. Everything I’d read and learned about it? Disappeared from my head like kids in the presence of a chore chart.
When I asked Hubby about it later, he told me it wasn’t as bad as I thought. I just sounded like someone who’d spent a week on WebMD, diagnosing themselves with a rare and exotic disease. (Yeah. Not THAT bad at all.)
On the up side, Neuro guy is awesome enough that, despite my lunatic-ish behavior, he heard my concerns to schedule me for a tilt table test. (Commonly the first step to check for Dysautonomia.)
Also, after shouting something along the lines of, “I HAVE BOOBS ON MY ANKLES!” and lifting my pant leg to display my foobs, he also gave me a nice order to be measured for compression stockings. (So far, I guess not half bad for a semi-public meltdown.)
He then informed me he still wasn’t convinced there wasn’t something deeper going on that needed to be found and dealt with. Since Babyface struck out (or dropped the ball, since I’m not exactly feeling very magnanimous this morning), Neuro Guy is sending me to a new Specialist; a Neuromuscular Guy. Hopefully, after the impending pokes, prods and shocks, they’ll be able to get a better idea of what in the name of Sock Monkeys is going on and (hopefully?) put the brakes on the thing.
Since I can’t just end this by sitting here with my head hung in embarrassment and shame (like I’d really like to do) I’m thinkin’ I need to find some moral or something. So let’s try this; the moral of today’s tale of idiot-like behavior in the face of the Neuro Guy, is to not doubt yourself. Or maybe it’s to try to get more sleep before your appointment. Or maybe if you’re gonna go out looking like a dumbass anyway, just go right on ahead and open with, “I HAVE BOOBS ON MY ANKLES!” and get the weirdness right out in the open from the word go.
Seriously though, it’s a far too often thing, for us chronically illin’ guys and gals, to be faced with a Doc (or DOCS) who’s convinced it’s all in our heads. We end up allowing ourselves to feel as if we have zero control over the future of our health, to doubt our sanity, to doubt symptoms we live with daily and to even doubt whether or not we’re in as much pain as we think we are or if we’re just big-ass wimps.
Self doubt has got to be the absolute worst side-effect of seeking medical help for a chronic illness. And to me, that’s sad commentary indeed.
And last but SO not least is the second worst side-effect; monstrous piles of embarrassment and semi-public humiliation that stems from flashing near-strangers your ankle boobs. *deep sigh*
Now? I think I’m gonna hide under my desk for the rest of the day and lick my emotional wounds.