i want to change the world/instead i sleep

Although I have absolutely no interest in writing a novel and have thus ignored NoNoWriMo for a decade, I fully intended to write at least a little bit this year for this blog.

I failed utterly.

I meant to write about my adventures reading the last 15 years of Marvel Comics in an attempt to better understand the Marvel Cinematic Universe.

I didn’t.


I meant to write about my obsessive collecting, ever since was I was a child, and how I’ve used it as a way to stave off mania and anxiety, and how often that’s backfired on me.


I didn’t.

I meant to write a post that has been percolating for almost two years now, about music videos, because that’s obviously totally relevant to the year 2015.


I didn’t.

I slept.


My struggles with chronic pain have become more consistently overwhelming than they were in the past. I know there’s an autoimmune component; that’s been clear for a long time. But it’s not specific enough to really find anything to do about it.  Meanwhile, whatever the root cause, more and more afternoons, the only times I have free, are spent with a heating blanket wrapped around my neck and my head, in a desperate attempt to relax the spasming muscles that press on my occipital nerves at the base of my skull for at least a little while, before my children return home and engage me once again in the physical endurance test that is inherent to raising two sensory-seeking autistic kids under the age of 7. The specifics aren’t important.  Suffice it to say, when you combine an obstinate four year old mentality with the need for heavy pressure, everyday tasks become a much bigger physical challenge than anything those sadists at Double Dare ever managed to come up with.  And I don’t even win a new pair of British Knights or a Casio keyboard at the end of the day.


The fatigue is constant. I find myself drifting off when I’m sitting next to my son in the morning, much like a couple years ago I was drifting off behind the wheel.  I had a sleep study done back then.  Nothing out of the ordinary. No reason for me to be so tired; nothing obviously dysfunctional about the amount or quality of my sleep.


A few months ago I had a really crappy experience with a neurologist who clearly wrote my symptoms off as psychosomatic as soon as he saw the words “bipolar disorder” on my chart.  He did a standard neurological exam on me, even though I could tell him I wasn’t actually experiencing any of the vertigo or weakness or aphasia or tremor at that exact moment (it takes a little while for a referral to go through, after all), so obviously I would pass.  He told me I didn’t have MS or Parkinsons or Huntingtons, which I knew, and thus he was uninterested.  Tears welled up in my eyes when I asked him why, if there was no obvious neurological cause, I was having neurological symptoms.

He suggested yoga. Or maybe swimming.


I left the office holding in my sobs.

He sent me for a nerve conduction test, I think maybe as a sop so I would feel like something was being done. If you haven’t ever done a nerve conduction test, don’t.  It involves being poked with a ton of needles and then mildly electrocuted again and again.  The neurologist at the testing site bounded in like an oblivious puppy dog: “Good news, you have no signs of nerve damage!”


Yes, obviously that’s good news.  I didn’t WANT to have nerve damage.

What I wanted, though, was something approaching an answer.  He gave me none.

I’m starting to feel a little desperate.  I’m flailing. Recently I’ve had wildly fluctuating blood pressure readings.  Could I have some sort of dysautonomia as a result of autoimmune illness?  Maybe, but there’s only one doctor in all of Western New York who specializes in dysautonomia, and she doesn’t take insurance and seems like a bit of a quack. When I called the local headache clinic to see if they could help me with what I’m convinced is occipital neuralgia mimicking a lot of migraine symptoms, I get told they aren’t actually taking new patients (despite their ads on the radio) and are instead referring to the neuro center in Buffalo, over an hour away.


(Side note: When I hear politicians saying that single payer health care would be a disaster because people in countries with universal health care have to wait a really long time for specialists, I just shake my head.  What universe do they live in, that they don’t realize the same thing happens in this country, we just pay absurd overhead and out of pocket costs for the same shitty care?)

The day I took a shower and the water running onto my face burnt like fire, I got out of the tub and stared at myself in the mirror in shock.  The skin on my face was so red and raw and dry it was peeling off in flakes.  I have to wear two layers of moisturizer, repeated throughout the day.  I really like my dermatologist, she’s an old friend, but there is literally no point to going back to her every time I have an obvious cutaneous autoimmune attack.  Because it means nothing more towards the overall picture; it’s just another checkmark in the same column that gets checked over and over.  When I’m flaring, my skin flares brightest.


Some days I can’t squeeze the gas pump long enough to fill up my tank.  Whatever is going on in New York State that apparently mandated the removal of the little flip-down bars on gas pumps so you didn’t have to stand there squeezing like an idiot, I’m pretty sure it’s a violation of the ADA.

But whatever.  Some days I can’t squeeze my shampoo bottle hard enough for anything to come out, so it could be worse.

At the beginning of the year, I went to my daughter’s classroom for the yearly open house.  The teacher told us that one of the first activities the class was doing involved the concept of “filling people’s buckets” — some sort of convoluted metaphor for thinking of acts of kindness you can do for other people. Up on the wall were a few rows of orange buckets with semi-legible first-grader handwriting on it.  I scanned the wall, not sure if my daughter would have engaged in the exercise, and after a few seconds I recognized a couple of telltale letters that immediately identified the writing as hers.  My first reaction was shock and pride at the fact that her handwriting was actually better than most of the other kids, and she had written a longer sentence than almost anyone.  Fine motor skills are a challenge for her, and writing long chunks of text are a real source of anxiety.  I was so impressed that she had risen to the task.  And then I read what she wrote.

The way she could fill someone’s bucket was to “be nice to mom because she always hurts.”


I am broken, and my children know it.

So when they’re gone, I sleep, because then maybe when they’re here, I can pretend not to be broken for a little while.

And that’s why this is my only post for NaBloWriMo.

I suppose there’s always next year.



One time on House it actually was lupus, though.


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.

I hurt. A lot. Like, a lot of the time. And it’s one of those things that sneaks up on you, because your back goes out or your knee starts doing something wonky or your head just starts to feel, on the regular, like someone has taken an orthodontic rubber band and wrapped it around your skull in some misguided attempt at jerry-rigging a brain corset…so you go to your doctor and you’re like, yeah, so, this/that/the other body part hurts, and they say, “Well, do you feel fatigued?”

There is LITERALLY no way for the mother of two young children to answer that question in a manner that provides any sort of clinical relevance whatsoever. Like, YES, asshole, I’m fucking tired. Who isn’t tired? Are there actually people out there who aren’t tired? Who are these people? Do you have a heavy object I can hit them with, repeatedly? Because they suck and deserve to have bad things happen to them.

But apparently I’m more tired than I should be. That seems to be the consensus of the doctors I have met of late. After a relatively pointless New Years Day ER visit last year that got me a shot of demerol for a spazzed-out trapezius, and a series of unsustainably expensive “gentle chiropractic” visits to address a piriformis spasm that left me walking like I had a piano strapped to my back, I ended up with an appointment last summer to have my hyperextended knee looked at. And the doctor on call, who I had never met before, kindly told me that I was channeling all my stress through my body and needed to find a more productive outlet. “You need to find a better way to deal with stress,” he said, in a way that sounded, in the moment, considerably more condescending than sympathetic. I wanted to punch him; instead, I started laughing hysterically and burst into tears. “Oh, OKAY!” I said, rolling my eyes. “Do you have any particular ideas?” He sent me to physical therapy, which, although I love my physical therapist, really only added more stress! Because now I had to find times to fit weekly PT appointments into a family calendar that basically consists of “Husband: works from 8 A.M. to 7 P.M. weekdays and essentially on and off all weekend; Child #1: school occupational therapy speech therapy behavioral therapy movement therapy special needs gymnastics TV & iPad addiction, feed somehow, bathe somehow, toilet somehow, periodic meltdowns; Child #2: neglected; Mother: fetal position when not driving Child #1 all over town and utterly failing to live up to needs of Husband and Child #2.”

There’s this thing that comes up a lot in articles about parenting, and books about parenting, and pamphlets about parenting that you get at your kid’s well-child pediatrician visits with a little clip art lady with her head in her hands on the front…it’s this checklist item called “Self Care” and it’s about taking time out to take care of yourself, do something you enjoy, let yourself exist independently of your mom identity…basically find a way to make your life look like a yogurt commercial for an hour or two a week. This is not a concept I have ever been able to make a reality in my life. I was reminded yet again of this particular failure by a rheumatologist I saw recently. He asked me, very casually, as he was washing his hands, “So, what do you do for fun?” It was almost like he was making small talk, but he wasn’t; it was diagnostic. Because someone who is healthy should have an answer, any answer. I didn’t. I was stumped.

The other question he asked that stumped me was similarly simple. It was, “When was the last time that you can remember that you were not exhausted or in pain?” Silence. System error. Null set. The denominator cannot equal zero. The limit does not exist.  THE LIMIT DOES NOT EXIST.