I just need to lay all this out so that when I finally do lose it, people can look back and say, "Oh, well, yeah, now I get it. It makes perfect sense, I would have gone bananas too."
Last xmas I decided in 2016 I was going to be pushy about figuring out what's wrong with me, neurologically - be my own advocate, finally get some answers. What actually happened is I saw a lot of doctors, endured a lot of tests (some of them quite painful), endured lots of people's opinions, and was made to feel bad about myself and question my sanity while my symptoms continue to get worse, all the way here into October, where I'm hanging out with a little more information but no real explanation. And this post isn't even about all that, it's just to set the stage.
Because here's what I want you, dear reader, to understand: for every one of these appointments (and we are in the dozens - intake, test, meet to talk about it, that's typically three per doctor, not counting my regular providers, who I see on either a semi-annual basis for maintenance or as-needed for problems, and always with a follow-up) there is an average hour and a half out of my day (driving to/from, sitting in the waiting room as the clock ticks past the appointment time, sitting in the exam room waiting to actually see the doctor, and then actually seeing the doctor). That's also an hour and a half out of my husband's day, which includes his lunch break if we were lucky enough to schedule somewhere between ten and noon so he could watch the children, unless I brought the kids WITH me (so that Wiggles can tear apart the room and scream and make the doctors look at me with annoyance or outright scold me), or unless he took the whole day off OR we recruited his parents to babysit. Always his parents, who also watch the kids during the IEP meetings and every other kid event or crisis that comes up. It takes a village, is what i'm saying. Every single time. Also, it takes a co-pay. And usually there's some sort of insurance flub that I find out about a month later and spend hours on the phone or writing appeal letters over, but that's a WHOLE OTHER rant.
So anyway. This is all just to give you a frame of reference for my state of mind while this OTHER medical ridiculousness unfolded.
In June of 2016 (about the time that I was nursing my son up out of a bipolar depression and getting circles of skin cut out of my leg for my birthday) I realized I'd been having a problem of, let's call it, a womanly nature. This womanly problem had gone on for over a month and had not been resolved in the usual manner of things, so it became clear that I needed to see my womany doctor.
Unfortunately, my womanly doctor (or more accurately, her womanly minions) failed to resolve this problem over the course of three or maybe four visits (I lost count. I think there was at least one in there where I didn't have to pay anything because it was a follow-up/call back for something they were supposed to have done earlier).
This brought us into July, when, even though I'd been swabbed and milked of all kinds of bodily fluids, I developed a raging fever from a UTI that they had not detected.
So, mid Julyish, I'm now at my GPs seeking help for the 104 degree fever. The doctor tries to get hold of the womanly doctor minions for results of the test I'd had like a week prior so she can determine which medicine would be best suited to my particular germs, but she can't, so she prescribes a broad-spectrum antibiotic.
The fever gets better, but the womanly problem does not. Also I get a bill for testing my pee from an out-of-network lab that I have to appeal (in addition to the $11,000 bill for my skin-circles, but, remember, that's another rant). So I make yet ANOTHER appointment with womanly doctor (we're in August now), spend almost an hour (while Tom is home with the kids, waiting to go back to work), waiting to see someone for this problem they still haven't fixed. And then I leave, because fuck them. Fuck everyone. I'll find a shaman or something.
So I go back to my GP. It's probably thrush, I'm thinking. Antibiotics tend to cause yeast infections (because the God of medicine hates women), and, well, there were other womanly reasons, so yeah, says the doctor, it could be thrush. I'm not going to test for that, though. Here's some liquid anti-yeast medicine for you to drink four times a day for ten days (and some more insurance bullshit to deal with. Lucky you!) Also, it could be acid reflux, so take some OTC antacids. Ok, cool.
Ten days plus some more later, I'm back at the GP saying, yeah, no, it's not all that better. In fact, my tongue feels numb now, like when you burn your mouth on too-hot pizza? It also kind of feels like when you suck on strong peppermints, and your mouth gets burny-numb. In fact, I've been sucking on a lot of peppermints because it's the only thing that makes me forget how awful my mouth feels. Do you think it could be related to my neuropathy (because i'd googled, and yes, that's a thing). No reply to that, but here, we'll swab now to see if it really is thrush, I mean, I'm not sure this is the right kind of swab, but I'll ask someone, and here, while we're at it, have some presription-strength antacids. Come back in two months.
Two weeks later, I'm calling the doctor again: yeah, I'm not better. Yes i've been taking the pills, but there's this coating on my tongue, everything tastes awful, I tried dousing it with mouthwash but it didn't go away and now I'm out of mouthwash. Did you maybe get results from that swab? No, it's not thrush? Could it be neuropathy? You know, like I have, and you've been helping me not find answer for? Still no reply to that, but we want you to go see a dermatologist now. Or, no, wait, a dentist. Yeah, a dentist.
Dear reader, have you been counting along? At this point we're at the end of a chain of seven-maybe-eight doctor's appointments just for this one thing. Not counting the other things. Like the aforementioned unexplained neuropathy or now the lump they found in my left breast earier this month (that's one mammogram, one pre-op exam, one biopsy, and one follow-up, assuming everything turns out to be normal). Seven-maybe-eight appointments, and now I've got to make another one to see a specialist, a derm-I-mean-a-dentist.
And then, well, insurance. The dentist I've seen since I was a teenager doesn't take our current dental insurance, so I hop onto the insurance website to pull up dentists near me who DO, and end up with a list of one hundred doctors in Chicago, even though it says "Near Newark Delaware" right at the top and, yeah, that's about when I had my nervous breakdown and posted pictures of spotty tongues on facebook. Let's roll past that.
Cuz the story's not done, see. I spent ten minutes on hold to the one practice in Newark who employs like twenty dentists - do you see what's happening here, America? McDoctors offices gobble up all the providers and then you can't get service because one office houses twenty dentists to serve an entire city. No wonder I was on hold for fifteen minutes... fuck them. Fuck everyone. I'll just live with pizza-burn tongue. With my shaman doctor. In my backyard. Growing our own corn.
But no. What I did was google "what kind of doctor should i see for my tongue", and then googled "ENT and tongue" (because it's "Ear Nose and Throat", not "Ear Nose Throat and Tongue", but yes, ENTs will treat tongues, and I HAVE one of those. So I made an appointment with my ENT - well not my ENT, because McPractice has like ten ENTs but mine is on vacation, but I don't want to wait until he comes back because now it's been two months without relief, so fine, I'll take whoever is open, even though that means I can never go back to my previous ENT because that makes perfect sense? Fine. Whatever, just fix me. I have Tom come watch the kids and go see my brand new ENT (appointment # eight-maybe-nine), and here's what he tells me:
You have "coated tongue". It's totally a thing, though not really, because we don't know what causes it, except that antibiotics often cause it. There's no treatment. It goes away on its own. Usually a lot faster than this, but you've been using a lot of mouthwash and sucking peppermints, and those can irritate it and make it worse. Oh not a lot of mouthwash and just mild peppermints from the candy aisle? Still. Stop doing that. Go home, do nothing, read about it on google but don't take any advice from google. don't try to make it feel better, and maybe it'll get better. If not, come back in two months, because it might also be a nerve thing (note that I didn't mention the neuropathy). It might also actually be thrush, but since they checked for that, meh, it's coated tongue. That'll be $25 please.
So yeah, this is how I spent a quarter of my year. It's my life in a nutshell, because everything is like this, really. A big complicated chain of ridiculousness that gets me nowhere but worse than I started, waiting for something to get better. Maybe.
On the bright side, two months without mouthwash and peppermints will put me in mid-December, exactly one year from when I decided this year would be the year I solve my medical problems.
Maybe 2017 will be the year of Fuck It. I'mma just wear a tinfoil hat and hope for the best.