I always hated that game when I was younger. While all of the other teenagers or college kids put down fingers or took drinks with a sly I'm-busted-for-something-cool-and-notorious-making, I sat on the edge and tried not to call attention to my full cup and the five fingers that all still stood at attention. I was never part of the popular elite like my sister and I was never the bad girl or wild child but I'm okay with that. I never snuck out of the house, I was always home by curfew and called if I was going to be late, I've never even smoked a cigarette and didn't drink until college. I've never punched someone and never gotten detention, let alone been arrested. I did slap someone once, but he asked for it and we're good now. At 26, there are plenty of things I've never done, and while it was embarrassing from time to time when I was younger, I have no regrets. I'm a goody-two-shoes and that's fine. There's just one thing I haven't done that from time to time makes me sheepish: I've never seen someone have a tonic-clonic seizure.
Last week, I was on a Google Plus Hangout video chatting session with some other epilepsy bloggers. "Meeting" them and swapping stories was great - they're all talented, dedicated people who are doing their part to make the world a more seizure-friendly place. We talked about what kinds of seizures we and ours have and I was amazed, as always, at how many different kinds exist. "You know what I'm talking about," was usually true, but a few times I hung back, hesitant, feeling like I should know more than I do. How haven't I ever seen someone have a grand mal seizure? I mean, I'm an epilepsy blogger! What kind of fraud must I be? I glanced at my untouched ginger ale and flashed back to an outstretched palm.
Why is it that we all want to be included so badly that we find ourselves wishing for terrible things? Staring into my computer on the tall kitchen table in my shoebox apartment, I realized what I was thinking and felt a little ridiculous. Would it be easier to relate if I'd seen one? Probably, but I should be glad, grateful, that my friends and family have never had them and none of the kids at the Epilepsy Foundation of Colorado's summer camp had one at lunch, walking through the Estes Park YMCA or, God forbid, on the ropes course. I remind myself of that whenever I'm feeling insecure, unsure if I'm really qualified to write about epilepsy.
On that note, here is a video of a generalized tonic-clonic seizure from the point of view of the man having it. It's a very powerful video and I recommend following the instructions: wait for it to load completely before starting it, turn off all the lights and wear headphones. It's very illuminating if you've, like me, never seen one or, like me, had one many years ago in the middle of the night and don't remember anything.
Kudos and thanks to Nathan Jones for doing such a great job with this and letting me post it here for you.
Showing posts with label EEG. Show all posts
Showing posts with label EEG. Show all posts
Monday, February 6, 2012
Tuesday, January 24, 2012
The Longest Day
I was watching a show the other day about the training of special forces for various branches of the military. One episode featured a final exam called The Longest Day. It began with paddling a rubber raft through crashing waves, carrying it through the trees, completing a mission and walking the miles back through tear gas without masks. Somehow that sounds worse to me than brain surgery, but maybe it's because I know I can make it through it.
This day last year was my Longest Day. It was the scariest, most painful day of my life and I know I'll never forget it as long as I live. Right about now, I was finishing up my "stim test", where each electrode on my brain was reverse stimulated in turn to see what would happen. The doctors would press a button and my hand would jerk, or my eyes would move or my tongue would stick to the roof of my mouth and I couldn't breathe. Each time I heard one call a set of numbers to the other, I would wait for the shock and pray to God that nothing would happen. They were looking for my motor strip and I wanted so badly for it not to be under my seizure origin point, what they had come to call "the birthmark". I sat in my hospital bed, clutching the small, stuffed dog that my parents had gotten me in the Mayo Clinic gift shop. I was so scared. I focused on the sign my sister had made me that hung in my hospital room: We Love Our Erica. I traced the patterns with my eyes, drank in the colors and tried to stay calm.
In an hour and a half, my surgeon would come in and tell me that the birthmark was not on my motor strip, but right up against it. I was a candidate. I exhaled with my whole body, my whole spirit. I was a candidate. He told me that I could have the surgery, but there was a chance I would lose a good amount of sensation in my hand - I would have a hard time knowing how much pressure was needed to hold a fork, being able to recognize the shape of my wallet in my purse by touch. There was a chance I would lose some speech, some short term memory, though it wasn't very likely. "Do you still want to do it?" I paused for only a moment, because what stood firmly in my mind was that nothing had gone wrong yet, so there was no way it would start now. I lifted my right hand, covered in white tape to hold the IV in place, to the plastic table over my lap and signed the consent form.
Not until about 4pm was I finally brought down to the operating room. I remember a cleaning woman in the elevator as I was rolled in by a nurse. I said, "Hi, how are you?" as cheerily as I could. She looked startled but then smiled. I tried to be brave in the pre-op room among dozens of other patients in blue and white polkadotted smocks, lying in rough, white sheets on a plastic bed. It was easier the first time, when I didn't know what would happen, when I had no idea what I was getting myself into. Somehow, this time it was terrifying. A couple nice doctors, nurses and techs stopped by to explain a few last details, but I didn't care about the information, I just wanted their smiles and calming voices. A few layed hands on my shoulder or foot, and just a simple touch like that brought a sliver of peace.
The OR was brighter, more sterile, more ominous and more lonely than I'd remembered. Cindy wasn't there this time; she'd placed electrodes on my scalp for my monitoring the day after Thanksgiving and the grid on my brain during my first surgery, but since they were removing it, a much less delicate process, she was somewhere else. I didn't know anyone there. It was like the first day of kindergarten: terrifying and, as yet, the biggest day of my life. One man in blue scrubs came closer and smiled through his mask; he said Cindy had told him to take good care of me. I relaxed a little as he held my left hand and someone else took my right while a clear mask was lowered over my face.
I try to forget what happened when I woke up in post-op recovery. I try to block out the pain that was so terrible I screamed; the way I writhed on the bed, the bright light that stared me down when the doctors made me open my eyes, their hushed voices when I sobbed that my pain was a twelve and begged them to help me. That scene is burned into me. It felt like an eternity as the hysterical crying I realized was my own melted to a pleading whimper. This hadn't happened after my first surgery. Couldn't anyone help me? What went wrong?
Last night it came to me like it sometimes does. A wave of remembered trauma, pain, relief and gratitude smashed over me, its full force against my mind. Wet tears slid down my face and as my rock held me in his arms, they turned to sobs that wracked my body and tore sounds from my throat despite my efforts to stifle them. I could see the wet collecting on the collar of John's blue shirt, turning it dark and shiny. I began to calm down at the insistence of my nose that it needed a tissue. I went through three before I could breathe steadily again. I clutched John's back and laid my head on his chest. "It's okay, baby, it's gonna be okay. You've been through a lot." I have.
Thank you to everyone; all of you who have been here for me, with me. Thank you, God, for the blessings you've given me. Thank you, John, for listening, understanding and supporting me every day. Thank you, mom and dad, for holding my hands; sitting quietly when every little noise hurt; making up stories when I was scared; spoon-feeding me; forcing me to sit up, stand and walk despite my dirty looks and petulance; fixing oatmeal and fruit every morning; re-teaching me how to knit so I could regain the function of my hand; making me take naps even when I didn't want to; taking me on slow walks around the block in freezing cold January weather; but most of all, teaching me how to live the kind of life that makes me happy and fulfilled.
John asked me what I want to do tonight to commemorate my anniversary. I haven't decided yet whether I want to go out and celebrate or stay in and remember. Either way, I'll remain, as always, eternally grateful.
This day last year was my Longest Day. It was the scariest, most painful day of my life and I know I'll never forget it as long as I live. Right about now, I was finishing up my "stim test", where each electrode on my brain was reverse stimulated in turn to see what would happen. The doctors would press a button and my hand would jerk, or my eyes would move or my tongue would stick to the roof of my mouth and I couldn't breathe. Each time I heard one call a set of numbers to the other, I would wait for the shock and pray to God that nothing would happen. They were looking for my motor strip and I wanted so badly for it not to be under my seizure origin point, what they had come to call "the birthmark". I sat in my hospital bed, clutching the small, stuffed dog that my parents had gotten me in the Mayo Clinic gift shop. I was so scared. I focused on the sign my sister had made me that hung in my hospital room: We Love Our Erica. I traced the patterns with my eyes, drank in the colors and tried to stay calm.
In an hour and a half, my surgeon would come in and tell me that the birthmark was not on my motor strip, but right up against it. I was a candidate. I exhaled with my whole body, my whole spirit. I was a candidate. He told me that I could have the surgery, but there was a chance I would lose a good amount of sensation in my hand - I would have a hard time knowing how much pressure was needed to hold a fork, being able to recognize the shape of my wallet in my purse by touch. There was a chance I would lose some speech, some short term memory, though it wasn't very likely. "Do you still want to do it?" I paused for only a moment, because what stood firmly in my mind was that nothing had gone wrong yet, so there was no way it would start now. I lifted my right hand, covered in white tape to hold the IV in place, to the plastic table over my lap and signed the consent form.
Not until about 4pm was I finally brought down to the operating room. I remember a cleaning woman in the elevator as I was rolled in by a nurse. I said, "Hi, how are you?" as cheerily as I could. She looked startled but then smiled. I tried to be brave in the pre-op room among dozens of other patients in blue and white polkadotted smocks, lying in rough, white sheets on a plastic bed. It was easier the first time, when I didn't know what would happen, when I had no idea what I was getting myself into. Somehow, this time it was terrifying. A couple nice doctors, nurses and techs stopped by to explain a few last details, but I didn't care about the information, I just wanted their smiles and calming voices. A few layed hands on my shoulder or foot, and just a simple touch like that brought a sliver of peace.
The OR was brighter, more sterile, more ominous and more lonely than I'd remembered. Cindy wasn't there this time; she'd placed electrodes on my scalp for my monitoring the day after Thanksgiving and the grid on my brain during my first surgery, but since they were removing it, a much less delicate process, she was somewhere else. I didn't know anyone there. It was like the first day of kindergarten: terrifying and, as yet, the biggest day of my life. One man in blue scrubs came closer and smiled through his mask; he said Cindy had told him to take good care of me. I relaxed a little as he held my left hand and someone else took my right while a clear mask was lowered over my face.
I try to forget what happened when I woke up in post-op recovery. I try to block out the pain that was so terrible I screamed; the way I writhed on the bed, the bright light that stared me down when the doctors made me open my eyes, their hushed voices when I sobbed that my pain was a twelve and begged them to help me. That scene is burned into me. It felt like an eternity as the hysterical crying I realized was my own melted to a pleading whimper. This hadn't happened after my first surgery. Couldn't anyone help me? What went wrong?
Last night it came to me like it sometimes does. A wave of remembered trauma, pain, relief and gratitude smashed over me, its full force against my mind. Wet tears slid down my face and as my rock held me in his arms, they turned to sobs that wracked my body and tore sounds from my throat despite my efforts to stifle them. I could see the wet collecting on the collar of John's blue shirt, turning it dark and shiny. I began to calm down at the insistence of my nose that it needed a tissue. I went through three before I could breathe steadily again. I clutched John's back and laid my head on his chest. "It's okay, baby, it's gonna be okay. You've been through a lot." I have.
Thank you to everyone; all of you who have been here for me, with me. Thank you, God, for the blessings you've given me. Thank you, John, for listening, understanding and supporting me every day. Thank you, mom and dad, for holding my hands; sitting quietly when every little noise hurt; making up stories when I was scared; spoon-feeding me; forcing me to sit up, stand and walk despite my dirty looks and petulance; fixing oatmeal and fruit every morning; re-teaching me how to knit so I could regain the function of my hand; making me take naps even when I didn't want to; taking me on slow walks around the block in freezing cold January weather; but most of all, teaching me how to live the kind of life that makes me happy and fulfilled.
John asked me what I want to do tonight to commemorate my anniversary. I haven't decided yet whether I want to go out and celebrate or stay in and remember. Either way, I'll remain, as always, eternally grateful.
Wednesday, December 28, 2011
One Year Follow Up
The blue glue had formed dry clumps that stuck to my scalp and clung to the bases of each hair springing forth from it. I must say, though, that getting it out this time was much easier than when I had long hair. I turned the pink bottle of Garnier Fructis conditioner upside down and watched a long, creamy snake emerge and coil onto my palm. I ran my hands through my hair, feeling rough spots where the EEG leads had been that morning. The tech who put them on suggested putting conditioner in dry hair and letting it sit for a bit before combing out the glue and rinsing. I turned the black dial on the wall of my parents' bathroom and shut the sliding glass doors of the shower as it filled with steam. I figured fifteen minutes would be enough time: five minutes to fill with white fog and ten to saturate my dry skin and coughing lungs. The steam swallowed me as I stepped into the tan tile enclosure, sliding the warped and frosted glass behind me. I stood with my back to the spigot, letting the hot air warm my body. I had to inhale slowly through my nose to avoid water-induced coughing that felt like choking. I let my muscles relax and melt for a bit; it had been a long day.
My alarm went off at five thirty, Maroon 5 cutting through the early morning silence in the Rochester Garden Hilton. My mom stirred next to me as if she'd already been awake a few moments; John tried to sleep through it but I could see him twitch from his bed a few feet away. We brushed our teeth and washed our faces and my mom and I put on a little make up though it didn't do much to hide the bags under our eyes. In fifteen minutes, we were dressed, packed and out the door. The air was cold outside, a stark contrast from the desert climate of our room. Fortunately the car wasn't far away and it felt like no more than a minute had passed when we pulled into the best parking spot I'd had yet at the Mayo Clinic.
Standing in the steam, I picked up the pink comb on the ledge next to me and began running it through my hair; first one direction, then the next. I pushed the teeth along the scalp just above my hair line; I combed left, picking up glue and wiping it onto my leg, then combed right, finding a little more, and last forward, leaving wet hair hanging straight over my forehead like bangs with a slight curl at the edge where it met my eyes.
When we arrived at the door, the Gonda building was locked. "The doors don't open til six thirty," said a guard. A handful of other early arrivals sat on chairs or leaned against the glass wall separating the heated inter-doorway space from the white marble atrium.
"What time is it, mom?" I asked.
"Six ten," she replied. "Let's go get some breakfast." Caribou Coffee stood with warm welcoming arms across the street and down the block. I had oatmeal, John had a breakfast sandwich and mom had a coffee. I grabbed a paper napkin printed with the Caribou logo and a short holiday-themed Mad Lib. We ate our food and conversed in a series of requested adjectives and nouns, which I entered onto the napkin using the pen I lifted from our hotel room. The result was a mildly amusing story of buying bacon presents for your scissors and decorating a Christmas chair.
Our spirits lightened noticeably with food in our stomachs and we headed back to the hospital, checking in and being directed to the elevators to the desk on the eight floor of the Mayo building.
I'm quite convinced that the elevator in the Mayo building is the slowest in the continental U.S. It rose oh so incredibly slowly and steadily until the climbing light illuminated a black, printed "8", eliciting a ding and a slight lurch as the doors slid open. We stepped out into an unlit elevator bank, slightly concerned as we turned the corner to find an empty room facing an empty check in desk with half of its lights still out. We took a seat in three adjacent chairs upholstered in a familiar mauve floral pattern and waited.
The blue glue came out almost easily with each scrape of the comb. I ran my fingers through my hair every couple minutes to find the next shadow of an electrode. My hands and arms had become covered with hair and little rubbery balls of glue. The steam had stopped its flow and I reached for the silver handle on the wall, pulling it upward to start a stream of hot water from the bath faucet. I rinsed my hands and the comb in the falling stream and watched the discarded clumps travel down the drain before carefully placing the white, rubber plug.
My alarm went off at five thirty, Maroon 5 cutting through the early morning silence in the Rochester Garden Hilton. My mom stirred next to me as if she'd already been awake a few moments; John tried to sleep through it but I could see him twitch from his bed a few feet away. We brushed our teeth and washed our faces and my mom and I put on a little make up though it didn't do much to hide the bags under our eyes. In fifteen minutes, we were dressed, packed and out the door. The air was cold outside, a stark contrast from the desert climate of our room. Fortunately the car wasn't far away and it felt like no more than a minute had passed when we pulled into the best parking spot I'd had yet at the Mayo Clinic.
Standing in the steam, I picked up the pink comb on the ledge next to me and began running it through my hair; first one direction, then the next. I pushed the teeth along the scalp just above my hair line; I combed left, picking up glue and wiping it onto my leg, then combed right, finding a little more, and last forward, leaving wet hair hanging straight over my forehead like bangs with a slight curl at the edge where it met my eyes.
When we arrived at the door, the Gonda building was locked. "The doors don't open til six thirty," said a guard. A handful of other early arrivals sat on chairs or leaned against the glass wall separating the heated inter-doorway space from the white marble atrium.
"What time is it, mom?" I asked.
"Six ten," she replied. "Let's go get some breakfast." Caribou Coffee stood with warm welcoming arms across the street and down the block. I had oatmeal, John had a breakfast sandwich and mom had a coffee. I grabbed a paper napkin printed with the Caribou logo and a short holiday-themed Mad Lib. We ate our food and conversed in a series of requested adjectives and nouns, which I entered onto the napkin using the pen I lifted from our hotel room. The result was a mildly amusing story of buying bacon presents for your scissors and decorating a Christmas chair.
Our spirits lightened noticeably with food in our stomachs and we headed back to the hospital, checking in and being directed to the elevators to the desk on the eight floor of the Mayo building.
I'm quite convinced that the elevator in the Mayo building is the slowest in the continental U.S. It rose oh so incredibly slowly and steadily until the climbing light illuminated a black, printed "8", eliciting a ding and a slight lurch as the doors slid open. We stepped out into an unlit elevator bank, slightly concerned as we turned the corner to find an empty room facing an empty check in desk with half of its lights still out. We took a seat in three adjacent chairs upholstered in a familiar mauve floral pattern and waited.
The blue glue came out almost easily with each scrape of the comb. I ran my fingers through my hair every couple minutes to find the next shadow of an electrode. My hands and arms had become covered with hair and little rubbery balls of glue. The steam had stopped its flow and I reached for the silver handle on the wall, pulling it upward to start a stream of hot water from the bath faucet. I rinsed my hands and the comb in the falling stream and watched the discarded clumps travel down the drain before carefully placing the white, rubber plug.
Tuesday, December 27, 2011
One Year Follow-Up Update 2
EEG showed no seizure activity!! Dr. So wants me to get a CT because of the headaches I'm still getting. Apparently my MRI in March showed some fluid in my brain hole, which was normal, but having surgery headaches at this point is not normal, so he's wondering if the fluid has grown. The results will dictate in part when I can start to resume risky activity like riding a bike or skiing. He'll call me with the results next week and tell me if I can start to decrease my Vimpat! If so, it'll be a long, slow process that will take a couple months. Caffeine and alcohol (minus vodka red bulls) can resume normal activity after I'm off the Vimpat.
All in all, pretty great news! Now just waiting for my insurance to approve the CT and hopefully I can get it done today - preferably early so I have time to get back to St. Paul and wash my hair before dinner out at 7!
All in all, pretty great news! Now just waiting for my insurance to approve the CT and hopefully I can get it done today - preferably early so I have time to get back to St. Paul and wash my hair before dinner out at 7!
Mayo Follow-Up Update
Mom, John and I drove down to Rochester yesterday evening, had sandwiches (me and J) and salad (mom) at Canadian Honker and stayed in a 2 queen bed room at the Hilton Garden - J in one bed, me and mom in the other. I was hoping to snuggle w my mom but no luck.
Woke up at 5:30 to a wake up call and two cell phone alarms. Got to Mayo at 6:15 but it wasn't open yet, so we went to Caribou for bfast. Eventually got in and went to 8th floor of the Gonda bldg to get my itinerary. They gave me a red pager and I thought they were going to call me up, but 7:25 came and I figured out that they didn't know I was there for my EEG. I went up and told them and fortunately the EEG station was at the other end of the hallway, so I wasn't late.
EEG lasted about 3 hrs and included a nap, reading out loud, looking at pictures, looking at strobe lights (yuck) and hyperventilating for 3 min (double yuck). After EEG, got blood drawn and had western breakfast bagel at Bruegger's for lunch. Hit up the billing dept to deal w the $9,440 that mom paid out of pocket in March when I was still fighting w COBRA. Turns out we might not get it back because it was used to pay for two MRIs that didn't receive precertification. We're gonna fight it but there's a chance we won't win. :(
Right now we're waiting to see Dr. So. He'll give us the results of the EEG and I'll ask about the headaches I still get.
Will give an update on our way home!
Xoxo
E
Woke up at 5:30 to a wake up call and two cell phone alarms. Got to Mayo at 6:15 but it wasn't open yet, so we went to Caribou for bfast. Eventually got in and went to 8th floor of the Gonda bldg to get my itinerary. They gave me a red pager and I thought they were going to call me up, but 7:25 came and I figured out that they didn't know I was there for my EEG. I went up and told them and fortunately the EEG station was at the other end of the hallway, so I wasn't late.
EEG lasted about 3 hrs and included a nap, reading out loud, looking at pictures, looking at strobe lights (yuck) and hyperventilating for 3 min (double yuck). After EEG, got blood drawn and had western breakfast bagel at Bruegger's for lunch. Hit up the billing dept to deal w the $9,440 that mom paid out of pocket in March when I was still fighting w COBRA. Turns out we might not get it back because it was used to pay for two MRIs that didn't receive precertification. We're gonna fight it but there's a chance we won't win. :(
Right now we're waiting to see Dr. So. He'll give us the results of the EEG and I'll ask about the headaches I still get.
Will give an update on our way home!
Xoxo
E
Wednesday, September 21, 2011
Guest Post
Check out a guest post I wrote for UKEpilepsy about surgery: http://www.ukepilepsy.com/epilepsy-stories/best-decisions-of-my-life/
Monday, September 19, 2011
Guest Post
My guest post on the TalkAboutIt blog: Diagnosed
http://talkaboutitorg.ning.com/profiles/blogs/diagnosed
http://talkaboutitorg.ning.com/profiles/blogs/diagnosed
Sunday, June 26, 2011
Kind of Exciting
The Epilepsy Foundation of Minnesota just released their July issue, and there's an article on my blog! Pretty cool, huh? In case you want to check it out, click here and it's on pages eight and nine!
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