Yes, I did finally see a rheumatologist, although my route there was almost comically circuitous. You see, when I was at the beginning of my pregnancy with D, I developed a rash. Nothing excruciatingly itchy or horribly disfiguring, but these spots started appearing around my ankles and then slowly, randomly, scattered themselves up my legs and onto my torso. The first ones I thought were spider bites, but then they got bigger rather than fading. They were red, kinda scaly, kinda itchy. So I showed them to my OB. “I have NO IDEA what those could be.” (In his defense, he was a third year resident at the time.) He sent me to a dermatologist (also a resident). “I have NO IDEA what those could be!…Can I take some pictures?” Nothing better than having the red splotches all over your swollen belly photographed repeatedly while you stand in your underpants waiting for a surprisingly painful punch biopsy. The results came back and the dermatologist, in her somewhat strained English, described it as “lichenoid…like lichen planus. It’s maybe autoimmune.” “So, like, my skin is allergic to my fetus??” I ventured, although even as I asked I knew the answer would be inconclusive and unhelpful. She ordered something called an ANA titer. ANA stands for Antinuclear Antibody, and it’s basically a really broad test that indicates whether your immune system has possibly gone haywire and is trying to attack itself. My result was borderline high (1:160) and I was told to go have a baby and then come back to check in afterwards.
I dragged a livid, wailing two-month-old into the dermatology clinic half a year later to show the doctor the even larger annular lesions that had formed on my thighs and chest late in my pregnancy but were starting to fade. She prescribed a steroid cream to help them skedaddle faster and had me retake the ANA test, along with a larger set of tests that check for the presence of more specific antibodies that can help pinpoint particular autoimmune diseases you may be at risk for. A few days later, I heard from a nurse in the office, telling me that my ANA was high again, so I might want to maybe think about seeing a rheumatologist. I said I was kinda busy with the whole “my daughter is screaming bloody murder in her car seat” thing, so I’d probably wait to see if anything weird panned out. The nurse said that sounded fine.
And then I went off and started attempting to parent and realized with horror that it really doesn’t become any easier to make time for “self-care” as your kid gets older. It actually gets way harder. And then I had a second kid. Ha ha ha ha, yeah, I know, I’m really not all that bright. And then my older kid got diagnosed with Aspergers! And ADHD! And then my fucking muscles started popping off like rusted bedsprings one at a time and I was all, hmmmmm…maybe I should get that referral after all.
A small patch of psoriasis on my knee finally gave me an excuse to head back to the dermatologist — a different woman this time, who seemed decidedly more concerned. She gave me another ANA test. While I waited for those results, I flipped through my medical records (which I happened to have in full due to the legal process following a car accident) and found some interesting information that had not previously been adequately disclosed to me.
First of all, the pathology report on that biopsy was eye-opening, to say the least. The rash that my doctor had said was “sort of like lichen planus” was actually described as “lichenoid dermatitis” and the pathologist specifically said he thought it was “unlikely” to be related to lichen planus but rather possibly associated with “collagen vascular disease”. Thank god for the good folks at Habush Habush & Rottier, LLC, because none of that shit showed up on the little biopsy summary on the UW Health My Chart app. Also, some numbers caught my eye. The ANA test they took after D was born was actually higher than the first one (1:360) , and it wasn’t the only positive result. I was also positive for something called Anti-SSA, an auto-antibody closely associated with Sjogren’s Syndrome and lupus. I honestly don’t think the doctor ever even saw the Anti-SSA positive. Nothing in her notes says anything about it, and the last call I got from the office was the morning before that result came back.
This time around, a nurse called from the dermatologist’s office the next day. My ANA was positive, and they would be referring me to the rheumatology department. “The good news,” she said in a misguided attempt to be perky, “is that all your kidney function tests are normal!” Was I supposed to be worried about my kidney function? Shellshocked, I hung up without asking for the actual result and had to call back to find out. 1:640. They took it twice to be sure. When they do an ANA titer, they dose the cells with fluorescent dye and look at it under a microscope to see the patterns the antibodies form on the slide. These patterns can also help indicate what autoimmune disorder you’re dealing with. The first time they ran it, it had a “speckled” pattern, which is relatively non-specific but rules out much stuff other than Sjogren’s and lupus. The second test, the pattern was listed as “homogeneous”, which is pretty much only seen in people who are either completely healthy…or have lupus.
So now one side of my brain has turned into George Costanza, wringing his hands and whimpering, “Is it lupus? It’s lupus, isn’t it?” And the other side of my brain is Greg House and is shouting, “It is NOT lupus. It is NEVER lupus.” And, you know, in general I’m inclined to agree with anything Hugh Laurie tells me. He’s the damned Prince Regent, after all. He spent a night of ecstasy with a pair of Wellingtons and he loved it. But given that I wasn’t seeing any doctors at Princeton Plainsboro and it’s pretty unlikely that I have naphthalene poisoning from termites or a tick in my vagina, the Costanza side of my brain seems to have more weight than usual.
But I don’t have lupus. At least, not yet. You have to have four symptoms off a list of a possible 11 to qualify for the diagnosis. So far as I can tell, I have three. Which does qualify me for rheumatologist visits every six months until one of my vital organs goes into imminent collapse. Meanwhile I maaaaaybe have an undifferentiated connective tissue disease, but I also maybe probably have fibromyalgia? Or maybe also/or myofascial pain syndrome? Piriformis syndrome? All of the the above? Unfortunately, what I definitely 100% do have, and have had for a very long time, is bipolar disorder, and all the drugs that work on fibromyalgia are effective because they futz with neurotransmitters. As do the two other medications that I’m on, medications that have kept me from being a total basket case for nearly a decade.
You know what’s worse than a parent who is exhausted and in chronic pain? A parent who is manic. You know how I know that? Because I’ve been manic. And manic people are the worst. Worse than Chris Brown. Worse than graduate students. Worse than everyone in Keith Olbermann’s book. WORSE THAN KEITH OLBERMANN. Depressed, I can do in my sleep. That’s actually a very precise description — if all else fails, if I’m depressed I can probably just go the fuck to sleep. But mania sneaks up on you. There is nothing more terrifying than knowing that if you let your guard down, or your prescription drug coverage lapse, there is something waiting in your brain for the perfect moment to take control and ruin your life. Stupid fibromyalgia. I couldn’t have something that could just lead to a relatively benign opiate habit. No, I get the pain that needs antidepressants to treat it. Which just adds to the impression, one I myself am not immune to, that fibromyalgia is a bullshit diagnosis, is “all in your head” as they say. It’s not bad enough that I spent the first three decades of my life dealing with the perception that all my mental health issues would be resolved if I stopped acting like such a stupid lazy fuckup who never lived up to her potential. Now you’re telling me that the pain I actually feel, in my actual muscles, pain that makes my shoulders twist into ropey knots, pain that shoots down my sciatic nerves and stabs me in my temples, pain that makes me be for mercy when something as seemingly inconsequential as my jaw seizes up…is pain that Cymbalta can fix? Man, fibromyalgia can suck it.