My body is weird. I don’t say that in a “I hate my body” kind of way. Don’t get me wrong, I hate my body in all kinds of womanly ways. I hate when I get constipated and my stretchy baby bucket allows my woman pooch to fill up and look like I have a poop baby, gestating to about six months, instead of just a little bloat. I hate that I my boobs are too small, and I hate that I still get acne breakouts. I hate that I have enough cellulite, that a few months ago, Collin, who still follows me to the bathroom asked me, “Mommy, why is your butt skin bumpy and mine isn’t.”
But, that isn’t what I mean. I mean that my body behaves weirdly, which makes medical diagnoses difficult, time consuming, and frustrating. There’s a theory, in the medical community, that when you hear hoofbeats, think horses, not zebras. For me, it’s always the zebra, or maybe an emu, or even an ostrich who identifies as a horse, wearing horseshoes.
On television, we see doctors like Dr. House, who get a mysterious patient, hone in, and refuse to let go, until they reach a solution. In reality, someone like me, who presents with a wild array of insane symptoms, even one with an already bizarre diagnosis, which may complement the bizarre array of symptoms, and even be a part of the list itself, is shuffled around to an ever-growing list of specialists to find not one diagnosis to tie them together, but a laundry list of them.
It’s a game of hand-off, pass the patient. It makes the patient (me) start to wonder if they are crazy. Am I sick? Is there actually anything wrong with me? Maybe this is all in my head? If Doctor A couldn’t figure it out, maybe it’s because there’s nothing there, and I’m actually fine. Am I just a hypochondriac?
Then, I remember that Doctor A did find something. He found lots of things; he just isn’t the right doctor to deal with the stuff he found. Medicine, these days, is so compartmentalized and specialized. It’s out of his area of expertise, and the stuff he found was scary. It was so scary, he was worried and insisted I see Doctor B. But, the tests Doctor B ran, ones he was sure would present a positive diagnosis, didn’t; but, they turned up something out of his area of expertise, and now I have to go to Doctor C. And on and on it goes. Now, I am all the way to Doctor Q, and I am tired.
Side Note: is Doctor Q a cool villain name, or what?
Eventually, I question if I am a not only a hypochondriac, but if I am such a hypochondriac, that I am being a hypochondriac about being a hypochondriac. How meta is that? I am constantly asking doctors if all this is necessary. I am constantly pressing them whether this is crazy; couldn’t I just be fine?
Can you imagine being my therapist? She’s paid well.
In the past eighteen months, here’s just a sampling my saga:
I pass out sometimes, for no reason. I just, poof, go down. Imagine lying on the couch with your head hanging over the side, then quickly standing. For me, just sitting normally gives me that feeling when I stand. I also pass out if I’ve had a bad headache. I’ve never worried about it. I always wake up, right?
My primary care physician felt otherwise, at my annual physical, when she took my blood pressure, and it presented as approximately low enough to be dead. Meh, it’s always low. I wasn’t concerned. So, I mentioned the “spells.” She made me do the sitting, standing, lying down blood pressure tests, and they changed dramatically, so she shuffled me off to cardiology for several other tests.
All signs pointed to a POTS (Postural Orthostatic Tachycardia) diagnosis, not uncommonly comorbid with Chiari.
Then, I had a tilt table test, which is the gold standard for diagnosing POTS. They strap you to a mechanized table, that tilts up and down, to see how long it takes to make you pass out. Only medical test I know of that’s basically an amusement park ride. Because they used this table so rarely, at the hospital I went to, the table barely worked; so, I passed (not out) with flying colors. Instead of it “tilting,” to any degree of speed, it moved at the rate of a 103-year-old woman standing up and down.
This left the cardiologist scratching her head, and she basically said, “whelp, for all intents and purposes, I’d have diagnosed you with POTS except for the tilt table test.” In other words: Dunno? Looks like a duck, quacks like a duck; but seems like it might be a whale? So, POTS-ish?
Did you know that a hepatologist is a liver, gall bladder and pancreas doctor? I do. I know this because I have a hepatologist. I also know my liver’s soft/hard value, because it’s been tested. This is bizarre and seems like something that a chronic drinker should know. I’ve had approximately three glasses of champagne in my entire life.
For as long as I can remember, doctors and nurses have said, in passing, after blood draws, “oh, your liver number is elevated,” or, “hmmm, everything looks great, but your alk phos (as if I know what that is) is a little off, probably nothing.” Again, my primary care physician, being ever diligent, noticed a pattern in those pesky numbers. Turns out they are always off. Turns out my liver is a weird-o. Turns out whatever day the random doctor noticed the numbers wasn’t a fluke; it’s consistent.
What no one knows is why it’s off, or what to do about it. Liver issues are noted with alcohol, or with obesity. They aren’t noted in thin, vegans who don’t drink. There are a few autoimmune diseases that cause liver disease; I tested negative for all of them. So, I have idiopathic fatty liver; but he isn’t sure I even have fatty liver. At this point, he is just guessing.
But, the values of my labs are so off, I have to continuously provide blood to monitor them. The good thing is it’s being watched. The bad thing is that I feel like a time bomb, waiting for my liver to randomly need a replacement. I know it doesn’t really work that way, but it feels that way. Mostly, I think it feels that way because my doctor is in the Georgetown Liver Transplant Center, and his waiting room plays, on a loop, a video about liver transplants. It’s unnerving.
Thanks, vital organ, for being weird and janky.
I did NOT want to go to rheumatology. I felt like it would be a rabbit hole. My pain doctor in California begged me to go for the three years, insisting that my joint deterioration, swelling, and even some of my other body symptoms were all connected. He was sure I was suffering from an autoimmune disease, and that I could be so easily helped, if only I could get a diagnosis that would tie everything together. After a particularly rough week of exhaustion so bad that I could barely move, I thought that surely no normal person is ever this tired, I finally made an appointment.
I have been tested for everything under the sun; but, my doctor was almost positive that I have Sjogren’s. It fit with all my symptoms. I am practically the poster child for it. For once, at my next dentist appointment, I’d have no shame about the inevitable new cavities. I would be able tell him that I have Sjogren’s and no matter how much I brush, floss and rinse, it’s almost impossible to battle the crippling dry mouth. I have virtually no saliva, cavities are going to grow. Not that Sjogren’s is just about dry mouth, but since it’s one of the things that’s most annoying, it came to mind.
I did find a solution that I particularly like for dry mouth though. If anyone out there has dry mouth from Sjogren’s, or from any meds that you are on, try these! I can’t find them in a store anywhere, you have to order them directly from the company’s web site. My dentist recommended them; they are amazing. It’s not too much to say that they have, literally, changed my life. Better than any rinse, strip, toothpaste, or anything out there. Best thing I’ve ever tried for dry mouth!
Alas, Sjogren’s doesn’t have a single test. It’s a diagnosis based on patient history and a few other tests that “help” make a diagnosis. I was negative for the ones that “help.” The test they consider the “gold standard,” is a lip biopsy. We all know how fun that was, based on my last post. I forgot to mention that I was so nervous to get the damn thing done that Bryon came with me, and was leaning over the chair hugging me when the doctor came in to start. The hug looked so awkward based on the chair’s position, that it looked like we were in a rather “delicate” position. The doctor and nurse, literally excused themselves as if we should have our privacy! So embarrassing! When we told Collin the story, he said,
“The doctor thought you were humping!”
My son, ladies and gentlemen.
My appointment to go over this negative result is in a few weeks; but, I expect the same type of conversation that we’ve already been having, an echo chamber of what I hear from my other doctors, really: there’s a ton of stuff we are finding in your imaging, tests, and in your blood, but it’s not matching with the predictions we’re making….you have something, I just don’t know what.
It’s so unhelpful and makes me so confused and frustrated. It’s always the same story: I have all the symptoms, I have almost all the positive test results, and then poof, I’m negative for something, and it’s very confusing to everyone. But then, alas, I’m positive for something else.
Today, I am declaring myself my own disease. I have Rachel. Since Rachel is incurable, there’s no point looking for that. Not to fear, it’s not lethal. However, symptoms are alleviated by her wonderful family (duh), presents purchased from Anthropolgie, Jonny Was, Frye, and especially from Tiffany’s. Symptoms are also reduced by spending time in California with loved ones, and by jolly kittens. They have to be jolly, otherwise the whole thing’s off. Other salves are relaxation with good books, painting, and creativity. Exacerbation of symptoms can be caused by traffic, people who don’t turn their phone volume down in waiting rooms, and anyone who won’t shut up about Game of Thrones.