My Body’s Betrayal – a prose poem

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“I have no idea what I’m talking about / I am trapped in this body and can’t get out” 
— Thom Yorke

An empty husk, sunk into a permanent hollow in the flannel sheet and mattress
A mattress that used to be his mother’s
Everything here used to belong to someone else,
myself included.
Perhaps not the children, as when I gazed into the sky in my youth, I knew them. 
John too.
But certainly the beds, tables, dressers, couches. 
Even my migraine disease was bequeathed.

In my bedroom Treehouse Retreat
the fan is always whirring,
an open window lets in a little breeze, 
scent of the outside world.
My stack of books, zipper case of meds, tissues and trash, lipgloss and lotion, my phone and iPad, pen and paper.
The special prayer shawl made by a lovely group of ladies at the church where my agnostic parents have provided organ and hymns for 35 years.
Beautiful notes and pictures from the girls; poems from John, taped to the walls.
Framed wedding and birth photos, the sign I took with me when Waldenbooks closed, proclaiming “I will start fresh”
My sanctuary but also my prison of pain and isolation.

Downstairs the thumping, squealing delight of my precious daughters
the clicking prance of the dog, John’s quiet laughter, “Hey, hello,” and
“Hi Ding-doggie, you wanna go out, you need to go out? Yes.”
Loud, exuberant welcome home celebrations
I cannot be part of with my current neuronal sensitivity.

J is tired, day 3 of his new job is completed, and he has much to do.
I am tired, having been alone for many hours,
dozing my pain away under a feather blanket
for the second day in a row.
Pain that right now is unusual, not too severe, but soul crushing.
It never stops. It is immune to my one choice of pill,
the tricky “triptan” Imitrex.

I will be with the girls
while J reads through
his new work policies.
I will check the homework
select the next “My Little Pony” on Netflix, fetch snacks, push pajamas, brush teeth
but not really see them, a robot going through motions.

The pain settles behind my eyes
my movements delayed
my throbbing brain still slowly trying to process why, this time, and what I should do.
I lost my headache doctor.
My neurologist will allow me only one abortive med at home which I am to take only twice per week despite my daily headaches. 
I called for help last week and she wouldn’t prescribe anything else. 
I have been to the ER 3 times
since Dr. T’s decision on Feb 18
and once went to a Ready Care.
Feeling desperate I tried some new supplements which might have made me worse.

Because the truth is that the transition from chronic daily migraine to twice weekly episodic could take years.
Or be not a realistic goal at all.
And without being allowed different medications, I’m going to be constantly rebounding on Imitrex
and be back, back, and back to the ER.
So yes, I think, a pain clinic next Tuesday.
If I make it that long.

Not a burden on my loved ones though, never that, except someone always has to take me to the hospital or take care of the kids
and today once again no housework was completed.
My face is flushed, my nose huge,
my eyes don’t want to open,
and with this cool blue bead wrap velcroed around my head
I look and feel ridiculous. 
Pale and gaunt in a huge tee and J’s gray fleece pajama pants.
I don’t know what to do and have nowhere to turn. 

And now I am lying down again,
eyes mercifully relaxed, counting my focused breaths, but distracted
by the fact that J insisted I come back up here, to rest
to let him handle it.
A burden? Yes.
Tonight J will, once again,
have to do it all.
And tomorrow my parents will
be with my 8 and 5 year old,
taking them to school, picking them up, while I curl around the pain
into the hollow of this bed-space
I’ve made my own,
in my silent, seemingly sophistic
separate country,
this safe and sad prison,
my betraying body’s sanctuary.

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Serotonin Stockholm Syndrome

For those of us struggling every day with chronic invisible illness, one of the most discouraging feelings is realizing that someone may not believe the pain we’re suffering. It might be the careless observation of an acquaintance (“But you don’t look sick”); the frustrated words of a well-meaning friend (“You’ve tried so many medicines and NONE of them work?”); or someone on Facebook who links info about the newly-approved Cefaly neurostim machine on your timeline with the assumption you’ll now be cured. But when this minimization of pain feels the worst, at least for me, is when it is your own doctor who seems to not take you seriously.

I felt extremely lucky, recently, to get a timely appointment with my neurologist, due to a cancelation, which I wrote about in my previous post. I had been dumped by my PCP who had been prescribing my meds and was in a tight spot. I was realizing maybe I relied too much on pain medicine to get me through tough times, or even not so tough times, setting me up for bad rebound patterns. Dr. T agreed and did not prescribe any more pain medicine or benzodiazepines, saying I’d come a long way. Treat only twice per week, she said, with Imitrex. Yes, I suffer daily headaches, but by going to this Headache Workshop and that Pain Therapist / Biofeedback Practitioner I could maybe work my way down to two treated headaches per week. In spite of no longer being able to hold a job, and having recently been determined to be disabled by the government because of the intractable nature of my disease, I still wanted to believe.

On my way home that day, studying my print-out from the appointment, I saw with relief that Dr T had left the medications in question as “current” on my file. I assumed that meant if I was in a bind I could still use those meds occasionally, and with that flexibility I felt even more that this plan was something I could do. Relaxation, visualization, biofeedback, better rest, exercise, food, YES! I could DO it! And if not, a month of pain medicine here and there to off-set daily use of the Imitrex. I felt good about things. Hence the post “Good Things.”

Yet even at my most optimistic, I thought about how I’d never been able to treat headaches only twice per week in my whole life. Even with parent mandated healthy meals and bedtimes; exercise in gym class; a counselor father skilled in progressive muscle relaxation and biofeedback with whom I practiced the techniques daily, my migraines were always closer to chronic than episodic. I knew it would be a long, hard road, particularly because simply NOT TREATING, trying to relax, meditate, ice-and-heat my way through the pain had always backfired with vomit-filled hysterical trips to the ER. And in fact I did have to go to the ER the day after my appt with Dr T, and then again a few weeks later. One seven day period I managed to take only 2 1/2 imitrex, but after that, due to weather and stress and lack of sleep and who knows what else, I slipped back into a daily pattern of pain. I had to leave the Headache Workshop early on Friday and stopped at an Urgent Care on the way home, where they prescribed 8 Norco tablets. Less strong than Percocet, less acetaminophen than Vicodin, they worked pretty well. After a few more days I did go to the ER yet again, and afterward decided it was time to see if I could get a 30 day script for Norco maybe, to complement the Imitrex until I made it through this cycle, especially since it is not as strong as Percocet, Schedule III instead of II. I called and spoke to the nurse who runs the Headache Workshop, the one who had heard in class how anxious I’d been feeling about having only one abortive at home during our mandatory discussion of “uncomfortable feelings.” I thought it might help me that this nurse now *knows* me, and at first it did seem to help as she listened to my situation patiently.

However, when she called back late the next morning and left a message after talking to Dr. T, she sounded uncomfortable. She said that I had “done so well coming off them by myself” that narcotics would not be reintroduced. Something was mentioned about my decision to reduce my Cymbalta – maybe I should go back up on it, she said (I had stayed at 30 mg). Make sure you go to the biofeedback, she said (I AM), and maybe see if “the physician who prescribed the anti-anxiety medication” would let me try something different if it’s not working. Now, that seemed almost passive aggressive. Yes, I picked up my last Ativan refill, but it was prescribed by the doctor who dumped me, which I thought they knew, and while it is helpful for sleep it does not relieve pain and neither does Cymbalta. So what I ended up taking away from the long awkward phone message was that Dr. T thinks that my pain is anxiety-produced, psychosomatic (to use an older term), or more to the point, “all in my head.” That it could be better “fixed” by returning to a higher dose of a brain-tweaking anti-depressant which I told her I hated than with the milder narcotic pain reliever I had requested. I felt punished. That they thought because I’d used the last available Ativan refill I couldn’t be trusted. That because during Workshop with this nurse I had expressed anxiety about having only one abortive medication at home, my admission was being used against me in the actual treatment of my illness by the last doctor in whom I still had been able to place a modicum of trust.

So here I sit, tears streaming down the right side of my face, where the sharp burning radiates from forehead to temple, behind the ear to my neck. I have located enough Imitrex to take it daily; when I run out I will have to return to the ER, where the more you visit, the worse you’re treated. Two imitrex today, and yes, the dastardly Ativan to calm my angry, scared pounding heart, orally disintegrating Zofran for nausea, a camphor pain patch at the site of the invisible impalement of what feels like splintered wood dipped in acid protruding from my skull. My whole self, slumped in disappointment and defeat. A cooling “micropearl” band velcroed as tightly as possible above my eyes, holding my protesting scalp in place, adding to the indignity. Benadryl, Zanaflex, all my “helpers” but not the one addition which could break this cycle and make me more comfortable, prevent me from needing to take the Imitrex every day, some kind of precious elixir of the opium poppy or factory facsimile. But no, because I am no longer deserving. Because I am a flickering file on a laptop screen, shimmering numbers which no longer add up to a patient worth bothering with or a real individual in pain. Textbook treatment. While every single migraine medicine causes rebound, cheap, old-school narcotics get the bad rap. Big Pharma’s serotonin-messing triptans, antidepressants, anti seizures, even antipsychotics are what get pushed. It’s an assembly line. I am a faceless cog in the machine. Serotonin Syndrome, Stockholm Syndrome, they won’t stop until I’m brainwashed. Until I accept that this is all there is for me. “For you, there isn’t any more.”*

And yes I know that any headache specialist or neurologist these days advises against narcotics for migraine pain. I know it’s the “right thing,” what she’s doing, in a typical case of migraine disease. But I have never been textbook, and I was ready to try this better accepted way as long as there was a little flexibility. I have been on a narcotic or barbiturate analgesic of some kind as well as an ergotamine or triptan migraine medicine plus a preventative and separate anti-depressant and/or anti-anxiety med since I was a child. And now, at 40, I am cut off just like that and expected to “relax,” do a bit of biofeedback, go back to my higher dose of Cymbalta like a good girl?

I don’t think so. I deserve the individualized treatment my complicated history demands.

But “for you, there isn’t any more.”*

*thanks to The Troops for Truddi Chase and their amazing chronicle of DID When Rabbit Howls for the quotation.

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Good Things.

Very soon after I wrote the WWED entry, on February 18, things lined up in that magical way that sometimes happens, the way that makes me feel like the universe is letting me know I’m doing something right.

It started with panic. I had a week or so left of my Ritalin preventative, no Ativan, no Percocet. I was trying to get in to a pain clinic because my neurologist’s assistant couldn’t see me until April, and no doctor I’d called would take me. I began texting my mom for reassurance, and she said that maybe the change would be good. Then J’s and my best friend who’d moved to Florida several years before, S, began texting with me as well. His fibromyalgia had flared recently too, and as we compared meds and symptoms I admitted to Mom that perhaps I’d been a bit too reliant on my precious Percocet. J and I spoke in person at the same time about whether the rebound cycle from Percocet might often land me in the ER. But… would I have only Imitrex at home then? The thought made the panic increase. S told me he felt like there was craziness in the air. His clients at work felt it too. A writer friend from college contacted me as well, complimentary about the latest blog post. “Harrowing,” she called it. I hadn’t had so many rewarding, important conversations in a long time. I felt alive. Not at all confused about who I was. I confirmed to S, yes. There is craziness in the air, I feel it too. Oddly, he said, “Nothing we can do, maybe we should say the Serenity Prayer.”

I rolled my eyes at that, a bit. S had become nearly insufferably new-agey, doing reiki and chakras and all that sort of stuff. However from my week in a psychiatric unit 17 years ago I have a fondness for that particular prayer as well. The wisdom to know the difference. Asia began to dance around me frantically and J was out, so I got up, leaving my phone to charge (unusual for me to not have it on me at all times) and took her outside, into the deep snow.

I spent some time letting Asia play on the leash, and stood laughing at myself as I walked around in my pjs and boots and mismatched hat and gloves, poking through the crusty layers of snow and ice with a pointed pole I’d found in the garage, looking for Asia’s buried tie-out cord. I did not think about Dr. P or Percocet or the Serenity Prayer, but enjoyed the feeling of being loved by family and friends, the sense of strength, the hilarity of randomly poking a stick through the snow and playing outside with a dog while wearing pajamas. I did not think of J’s great aunt Sister Emily Fox, one of the magical Fox Family namesakes of my second daughter, the three good witches of J’s childhood, the only benevolent, kind family he had. His own grandma having passed years before, her sister Martha, the nun, following a few years later. Grandma was the nun drop out, having fallen in love with J’s shifty grandpa. This last sister, also a nun, had died just two days before, on Zo’s birthday, the namesake child herself. Magical. But I did not think of Sister Emily or the three Fox sisters’ fondness for the Serenity Prayer as I stood somehow gleeful in the dim February sunlight, in the snow, with my silly dog.

I brought Asia inside and went upstairs and sat down on the bed, reaching for my phone to continue the conversations which had so enriched my day.

It rang, and I jumped. It rang, jarring, the old fashioned ringtone which meant school, pharmacy or doctor’s office. I never answer my phone, believing if it’s important I can listen to the voicemail. The screen said “Neurology Clinic.” What could that be about? My heart pounded. Without thinking I slid the answer bar and said hello, this is elizabeth.

A very cheerful voice, a voice with good news to deliver, said “Hi Elizabeth, this is Julie from the Neurology Clinic. How would you like to come in for an appointment tomorrow at 10?”

And just like that, everything slid into place. Tears sprung to my eyes as I thought about how very nearly I’d missed this call, wondering how I had gotten so lucky when I’d never asked to be on a waiting list; in all the years I’d been a patient there, I didn’t even know they had one. I had just won the lottery. “Are you kidding?” I gasped. “YES! Yes yes yes! How?”

Julie laughed, delighted by my breathless response. “We had a cancelation.”

“It’s with C?” The headache nurse coordinator assistant.

“It’s… with T.” Not just the lottery then, but the mega-millions jackpot. My life had just been saved. Very nearly literally. The neurologist herself, who hadn’t had an opening until July. I told Julie I would be there with bells on and burst into grateful, disbelieving tears. I texted S and my college friend, and my mom, then called J, who was stunned into silence and then barked out a joyous laugh, the best noise I’d ever heard, and my grateful heart filled to overflowing.

The rest of the day remained amazing, miraculous. A friend who’d been testy with me about canceling plans apologized. I apologized in turn to another good friend, and others I hadn’t heard from in a while contacted me to say hi or to see how I was. I felt like a good things magnet. The oddest message was from my lactation consultant and friend, who said she was feeling “nudged” to tell me that Jesus died for my sins and loved me always. Still, I did not think of Sister Emily.

The appointment itself was everything it needed to be: scary and grounding and full of reminders of how far I’d come. I had detoxed off NSAIDS myself; had been off Percocet for weeks and had come to the conclusion on my own it wasn’t the best thing for me. Dr T agreed, and didn’t want me on Ritalin anymore either. Her goal was to get me to two treated headaches per week, with imitrex only. She prescribed Periactin, an antihistamine often used as a preventative for children with migraine. In fact it was the first preventative I’d ever been on, which felt perfect in that full-circle kind of way. She referred me to a pain therapist / biofeedback practitioner and to a headache workshop and said C would see me in 8 weeks. I left feeling very nervous, but at least I was no longer in such limbo.

On the way home, we passed the large cemetery by the river and J became visibly choked up. He gestured to the rows of graves swishing by behind the black iron fence as we drove. His grandma is buried there. “Sister Emily,” he said, his voice thick with tears. And then I remembered. Her funeral was taking place that very day, maybe at that very moment. Sister Emily had always loved and accepted me when no one else in J’s family would. She had learned reflexology in the convent, and once during a visit had massaged my feet, specific to migraine, describing the methodology as her tough, calloused hands worked their wonders.

Thank you, Sister Emily Fox, the last of my husband’s magic ladies, his protective trio of grannies. Thank you for his life and your love and for being the other pole of my good things magnet.

The day after my appointment with Dr. T, I had to go to the ER, but since I had just seen her I was treated well. Just one visit, one dose, and then for seven days I needed to treat only 3 headaches. This week has not been as good, but that is the way of migraine and I am not discouraged. And I know who I am.

On Thursday, February 28 I learned that my Disability was approved. APPROVED, after less than three months, on my first attempt. I am ready to send in the necessary financial documents in order for my monthly payments to be figured.

J’s second interview for a good job in his field is tomorrow.

Good things.

God[dess] grant me the serenity
To accept the things I cannot change
The strength to change the things I can
And the wisdom to know the difference.

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