“You held me down, but I got up
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up
Get ready ’cause I’ve had enough
I see it all, I see it now
I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion, and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am a champion, and you’re gonna hear me roar
Now I’m floating like a butterfly
Stinging like a bee, I earned my stripes
I went from zero, to my own hero.”
I don’t like any current popular music, but I do follow pop culture. My knowledge of Katy Perry includes that the partner of a good friend of mine ran the stage show of her recent tour; that she wears some insane costumes and shows a lot of cleavage, even on Sesame Street; that she used to be married to Russell Brand and that like every other hot single famous female, she dated John Mayer. However, her most ubiquitous song became the first performance music for my youngest daughter and her tiny hip hop dance group recently, and I fell in love with “Roar.” It is a triumphant song of strength and girl power, an “I Will Survive” for today’s pre-teens. The first time I saw Zo rehearse with the other girl and two boys in her group, I wept. You roar, my little one, I thought. You roar.
As the Technical Rehearsal for the big recital approached, I was having a bad headache week. Still seeing my pain therapist twice per month and treating only with Imitrex, there had been some improvements. For example, two “green days,” which on my pain app indicates pain less than 4 and no Imitrex needed. I hadn’t been to the ER in SIX WEEKS. I am fairly certain that six weeks is the longest I’ve gone between ER visits since last summer. But there was still a feeling of foreboding. By having only one method of treatment at home, I felt so limited. I grieved the control I felt I had had when my medicine cabinet and bedside box contained a whole cornucopia of medication choices. Something was nagging at me, knowing this was not going to work, this was not going to be enough.
I began to plan a trip to the ER to break the Imitrex cycle I’d gotten myself into. I had been taking 3 Imitrex a day since the previous Friday, and was experiencing the “brain zaps” so often reported when withdrawing from an SSRI. But I should have had too MUCH serotonin so I was confused. I also felt extremely emotional, which peaked on the day that Maya Angelou died. I felt like I wept silently for nearly 24 straight hours. Looking back, this was extreme aura, signs of the approach of the meanest, randomest bitch of a migraine I had ever encountered in my entire life. But at that point, I was expecting just a normal bad one, a normal ER visit, when I could get there. Amazingly, I made it to that Technical Rehearsal on Thursday night.
Friday morning, my mom took me to the ER. My pain wasn’t too bad, but my cycle needed to be broken. The procedure has remained the same for a while: IV fluids with Decadron (a steroid to break the cycle and prevent rebound), Phenergan (an anti-nausea med which also helps migraine), and Benadryl (because people can be sensitive to Phenergan and Benadryl makes everything work better). I felt calmer and my nausea had abated but my pain was actually a little worse, so I signaled the nurse and received an unprecedented 2 mg of Dilaudid at once. Afterward, the nurse told me my heart rate had been at 140 before the Dilaudid. Normally my heart rate is in the 90’s, very high, but not THAT high. I wondered what that was about, but my heart rate returned to my normal, and I felt better, you know, like amazingly better, and I went home.
The problem with Dilaudid is that it does immediately help, but the pain creeps back within an hour, sometimes worse than before. So I always know I will need to continue treating the headache at home. However the fluids, Phenergan, and Dilaudid are needed to break through the initial pain and start the process of dissolving the migraine at the root. Since I didn’t really have anything to help at home, except more Imitrex, I began making text inquiries.
I have two below-the-radar sources for needed medications which I could no longer get prescribed. Neither is a sure thing by any means, but I occasionally get lucky. Very, very fortunately, due to a good friend’s generosity, I was able to get twelve 10 / 325 mg Norco pills. I took one, and had something to eat, and placed a frequently-used pressure band thing around my head. You can put ice packs in it, but when I apply cold with that much pressure it’s usually too much, so this was soft, room temperature ice packs. For some reason, as soon as I pulled the velcro to its usual tightness, extremely severe pain shot around the crown of my head, reverberating through my temples. “Okay, woah,” I thought and pulled that sucker off. That has happened before, but normally as soon as I pull the band off, the pain stops. This time, it didn’t. This time, the pain stayed extremely intense, like somehow that extra pressure triggered something ELSE and all hell was going to break loose.
I gathered all my headache comfort items, as well as a basin because I could already feel nausea, ice, heat, bottled water, my phone. I slept for a while. It didn’t help. No no no no, I thought, and NO, I said, when J came home and asked “Do you think we should start making plans to go back?” NO. The second visit is always worse, they always are suspicious. And the worse I feel, the harder it is, and I already felt worse than I had before receiving the meds that morning. I used my standard chewable Benadryl, Drammamine, Zofran, and Phenergan suppository (sorry) as well as two Zanaflex (muscle relaxer). That is like three different effective anti-nausea medicines and a sleep aid, so even though I felt the tell-tale signs of approaching vomiting, I took two more Norco. I lay down. I sat up. I puked. I puked so much that it splashed out of the basin onto my bed. Waves of relief hit me as the short initial improvement from releasing the internal turmoil soothed my skin, which had been prickly with hot flashes just moments before. The pills, the pills, I was able to think in a panic. I found one, still whole but flaking on the outside from the acid, and put it in a tissue. Finding the other was harder but I did. I knew I would need them.
Still, I refused to go back to the ER. I could handle this myself. I lay down with a “heatie,” what we call the soft microwavable bags filled with feeder corn a good friend made for me, and tried hard to breathe deeply and focus and relax my body. The pain edged up and up and up… until both temples, my entire skull, and my forehead felt like they were on fire from the inside out. I threw up again. The girls stayed with my parents, and J ran to the gas station to get some coffee, and suddenly I knew.
My memories are starting to fade. I remember nearly every scream, every time I curled my hand into a fist and pummeled it into the left side of my forehead as hard as I could. I remember trying to slam my head into my bedrail. I remember hitting at J as he tried to restrain me, I remember shrieking “I WANT TO DIE!!!” But the order of how these things occurred is no longer fresh. I just know that after vomiting three or four times, and the headache had reached 10 on the pain scale, I decided it was time to bite the bullet and return to the local ER, which I’d just left 8 hours prior.
I sent J a text and threw on my comfortable skirt and flats. I rinsed out my basin and tossed some meds in my bag with a bottled water and the paperwork from my neurologist’s office, which I always take with me as insurance against the drug seeking accusation. I vomited again. I could feel that this pain was sharper, more relentless, more intense, and I began to need to verbalize and I knew I was totally done for. Once I am vomiting and wailing, it’s exorcist time. The migraine takes over and elizabeth is gone. I went out to the car and sat in the passenger seat, rocking back and forth, clutching my basin and sobbing.
J got in the car and we drove the 30 seconds it takes to get to our local hospital, less than a block away. He was rigid, gripping the steering wheel, and I did manage to worry about him then. He HATES taking me to the ER, and usually my mom does it because it doesn’t bother her and she impresses the doctors. We weren’t worried about impressing the doctors this time because I was in such bad shape it didn’t matter. But he hates seeing me in that state, hates the way I’m sometimes treated, and he knew we were in for a long few hours. At that point I was still able to wish I could protect him from it.
In triage, I was treated gently and kindly as J and I struggled to explain what was going on. My BP was taken and they got me a wheelchair, which was unusual. The nurse said “Would you like to go to a dark room?” And I started crying again at her kindness, however, once I was in the dark room away from the hustle and bustle, I felt forgotten. I tried to lie on the vinyl couch and couldn’t sit still. I vomited again, bile, feeling like I was retching myself inside out. I lay down, sat up, moaned, cried, pulled at my hair, sobbed “What is TAKING so long?” And J said “We’ve been back here for five minutes.” I began to arch my back and twist my neck around, trying to contort my body into any position that might relieve the pain in my head a tiny bit. The pain was all-encompassing, overwhelming, like my skull was stuck in some sort of medieval torture device that both increased pressure and had sharp needle points. Both crushing and sharp, twisting and constant, and all I knew was the pain. The pain had gone so far beyond a 10, so far beyond the last “beyond a 10” headache I’d had which was in January, that I finally lost all sense of self as I was retrieved from the dark room and taken to an examining room in the ER.
They put the bed rails up and I lay down. I sat up. I screamed. I yelled. I sobbed. “Please, please please help me,” I sobbed. J was scared and helpless and I asked him to go get someone, and he said no because Mom had told him she always just waits patiently. “This is different I HAVE NEVER BEEN IN PAIN LIKE THIIIIISSSSS!!!!!” I shrieked. I kicked my legs and rolled around and flailed and screamed for a God I don’t believe in to help me or put me out of my misery. I flung my head from side to side and growled. I vomited again. I flung J’s hands away from me as he tried to help and comfort. I began slamming my head against the metal bed rail. My labor pain before the epidural had felt something like this, but this was worse. It is the only thing I know to compare it to though, like my brain was trying to be born through my eyeballs and ears all at once. And I screamed. And I wailed. And I contorted and kicked and spit and vomited and cried and yanked at my hair as hard as I could. Finally I demanded that J hand me the nurse call button, and I pushed the red “PAIN” button which caused a far off beeping sound and the room number outside the curtain to flash. Those lights… the fluorescent lights shone right through the top gaps in the curtains, nothing to block it out. A nurse came in and said “We’re going to try a new treatment which is fast-flow oxygen.” Well duh, oxygen, of course, usually for clusters though. Interesting. I accepted the mask, but as it was strapped on my face I began to panic. The last time I’d had an oxygen mask was right before my scary c-section with Zo, which was dangerous due to my placenta being in the wrong place. I had panicked when the anesthesia took effect then, because I couldn’t move and felt I couldn’t breathe, so when they strapped this oxygen mask on me, which was forcing cold air in my face, it only increased my panic by making me feel claustrophobic. So I had to fight the urge, this time, to rip the mask off my face, and I did, several times, but soon I did feel that I could lie still. I could stop flailing and screaming. I forced myself to breathe, breathe, breathe it in, and distracted myself with thoughts of whether this meant I might have had a form of cluster headaches, called “suicide headaches,” all along, even though many of the symptoms don’t match (mainly their short-lived, cyclical nature). J also was thrown back to the day of my c-section, our most traumatic day as a couple, and re-living it while I was experiencing the worst headache of my life was not ideal.
After what felt like an hour but was 15 minutes, someone came in and turned off the oxygen. My memory here is very spotty. I know that I was able to sit up after that and talk coherently, and I remember thinking that I’d gone from like a 20 to a normal 10 on the pain scale. The doctor was pretty great when he came in. I told him that I was “down to” a 10, and he said “Normally I don’t like people to be at a 10, but in this case that is improvement.” He told me he would send some medicine asap. He is the one who will only give oral Benadryl instead of putting it in the IV, and the only reason I can think he would do that is to punish the patient. Because Benadryl makes you feel good, it calms you down, and is totally harmless. But I had been vomiting since arriving at the hospital so surely he’d put it in the IV this time right? Nope. When the medicines came, finally, after I was told I couldn’t have any more oxygen because “my brain would forget to breathe on its own” and the pain had ratcheted back up to way above 10 and I was again wailing and screaming and thrashing and begging for someone to kill me, they DIDN’T EVEN GIVE ME FLUIDS. They give me fluids even when I haven’t been vomiting, that morning and always, because dehydration causes migraine. But I had been throwing up so much I didn’t have anything left. An IV was inserted, but just the little tube, and I received only Decadron and Phenergan, and the damn little pink Benadryl to swallow. Awesome, I thought, you guys are awesome. John made a disgusted noise but we’d fought this doctor last time about the oral Benadryl to no avail. We had stockholm syndrome by this time, do what you will people, I was thinking. I don’t give a shit, I’m already dead. The doctor had acted nice and he could tell I knew what I was talking about (while I could talk) but he still wasn’t going to budge an inch. The Decadron and Phenergan did nothing but make me more agitated, without the Benadryl since my stomach obviously could not digest anything. I started to get angry, and I lay there, knowing I needed to wait 15 minutes before letting someone know I was still in a ton of pain. Time had never moved so slowly. IV tube sticking out of my beautifully tattooed arm, J frantically texting Mom and pacing, me kicking my legs and jerking my head back and forth uselessly, furiously, the pain again in the realm of un-numberable, burning, piercing, relentless, pressing, sharp as knives, my skin alternately pebbling with goosebumps and sweating, shivery. Temporarily not vomiting, at least, just wanting some Dilaudid so I could go home and start working on this crazy headache myself, once again. I pressed the “pain” button. A voice through a speaker said “Yes” and I said “I am still in a huge amount of pain.”
Too long. It took way too long. And the doctor walked in and he was on his freaking high horse. I looked up at him, and thought, “This is how you like it, doctor, patients at your mercy, who desperately want something you can decide not to give them.” He lectured us. He lectured us about giving me Dilaudid and the pain simply returning. You know, because if he doesn’t give it to me, then the pain never goes away at all. I looked up again and said, “I know. I know about Dilaudid. Okay.” He said, “Have you ever had Reglan?” Well sir, considering that it is listed on my allergies, I believe you know that I have tried Reglan and that it makes me CRAZY. I said, “Yes. Reglan makes me feel horrible.” He sighed and said “All right, I will give you a little bit of Dilaudid, and we’ll see how that goes.” Finally someone came in with it, and the pain lowered again down to my normal 10. I said I felt better enough to leave. And J and I got the hell out of there.
When I got home, I vomited again. For some reason it was all watery and green that time. J got me situated in bed and brought me two Norco and a Zanaflex powdered up in some applesauce as soon as my nausea had again abated and I had taken more anti-nausea medication. It began to work. Slowly, my pain edged downward, more and more with each dose of Norco, until Isobel’s recital was approaching. Just like with the Tech Rehearsal, I was really the only one who could get her there, get her back stage with my special wrist band, get her dressed in her costume and light make up for the show, and wait in the wings for her. If I couldn’t go, she really couldn’t go. And I was going to make it there. I. Would. Make. It. There.
I saved my last two Norco, the ones I rescued from my own gross swill, to take before the recital. And I got up. And I washed. And my head felt airy and light and clear, but I felt like I was moving underwater. And I packed Zo for the recital, J took X to her friend’s where she’d be spending the afternoon, and drove us to the back entrance of the Performing Arts Center. As Zo and I walked hand in hand to the green room, my skirt swinging gently against my legs, my make up on, hair smooth and pretty, I felt like I had climbed a mountain and had reached the top refreshed and strong. Truly this was my greatest parenting achievement ever – I had gotten over the worst headache of my life and managed to still attend my daughter’s first dance recital 12 hours later. I was a fighter, had danced through the fire. Because I am a champion. And you’re gonna hear me ROAR.