Thankfully, my teenage body rebounded fairly quickly from the indignities imposed upon it by cataplexy and surgery. A few short weeks of relatively simple physical therapy later, I was off the crutches, and settling back into the routine of the teenage nerd of the 1990s: school, homework, and hanging out with my friends to play video games or Magic cards.
Upon return to school, however, narcolepsy began to spread its tendrils of influence through my life, unseen under the guise of the habits of typical teenager, which I was not. But who could blame the teachers and doctors for their ignorance? I started junior high school the same way I left elementary school, on the honor roll.
The decline started with math, specifically Algebra I. The early morning start time left me at a disadvantage to truly master these complex concepts. I would start a long relationship with caffeine at this time, self-medicating with Frappucinos and Jolt cola, trying desperately to fight the tides of fatigue that were pulling my eyelids and grades steadily downward.
Hot California afternoons spent in U.S. and World History only served to deepen my struggle against sleep. How do you take notes in class when your body and mind must be treated as the enemy lying in wait? But I never let my difficulties stop me from trying, and never resorted to cheating. I excelled in the classes where my body was cooperating, and used those victories to bolster myself when I felt doubt gnawing at me.
Another great positive I had in my life was that Jessica and her family had opened their home to me after school. I lived in a small town 15 minutes away, and started off the 7th grade year taking the bus home. Our fast friendship prompted both of our parents to allow me to come over after the school day was done, and have my mom pick me up after she was finished with work. We would spend almost every afternoon after school together all throughout junior high.
Jessica's family and home represented everything I wanted for my future. A normal, stable home life with everyday luxuries like central air conditioning, Internet access, and cars newer than 10 years old. But the friendship of Jessica and her family was what truly brought me joy, and not just a goal to work towards achieving. She and her family saw me for who I was on the inside. They didn't care that my family was working-class poor, that I dressed in ill-fitting clothes that were just behind the popularity curve. They just accepted me as Jessica's best friend, nothing more, nothing less. I had a safe haven in them.
With perseverance and absurd amounts of caffeine, junior high eventually gave way to high school. I had managed to do well enough in my classes that I wasn't worried about graduating high school, but advanced classes were rapidly slipping out of my reach. High school, however, would hold more challenges in store for me than just a dwindling choice of classes to take.
Copyright © Illustration by Hadley Hooper
Copyright © Illustration by Hadley Hooper
Wednesday, January 1, 2014
Saturday, September 14, 2013
Sleeping to Live - Part 1
Instead of a traditional book where you have to wait for the whole thing to become a finished product, I've decided to share with all of you my story, bit by bit, in blog format. It may take a while, but in this way I can not only share the process with you, but you can be part of my writing process by asking questions and making comments.
Thanks for following, and welcome to my story.
Thanks for following, and welcome to my story.
Chapter 1 – A Degree Removed
I’ve spent my entire life one degree removed from the norm. I excelled in school, but I grew up poor. I am an abuse survivor, but I broke the cycle. I was raised in a low-income family, but I left my hometown and aspired to more than just getting by. I am a veteran of the United States Navy, having honorably served my country in the Armed Forces for 10 years, but I am a female.
Like many of my fellow Americans, I suffer from an autoimmune disorder, but my disorder doesn’t have flashy public relations campaigns, like diabetes or Parkinson’s disease or multiple sclerosis do. In fact, most people hear about it in a joke before they even realize that it is a real, and debilitating disease.
I have narcolepsy with cataplexy. Most people with narcolepsy, or PWN as we prefer to be called, must hide this secret from the world, lest their employer label them as lazy. Or even worse, get fired or lose their health insurance, because of a lack of awareness and understanding.
Well, being one degree removed like I am, I refuse to hide. Instead, I want to use my experiences with having untreated narcolepsy with cataplexy as the spotlight that brings this terrible disease out of the darkness of benign neglect.
I am a person with narcolepsy, and this is my story.
Most people with narcoleptic children notice their kids’ fatigue before any other symptoms appear. I, however, was unfortunate enough to grow up during the explosion of highly caffeinated beverage marketing in the early 1990’s.
At 13 years of age, I would commonly start my day as a junior high school student with these sugary, caffeine-laden “coffee drinks” in order to stay awake in class. Either that, or I would get my hands on any caffeinated beverage I could. Remember Jolt cola? I certainly do, and up until last year, caffeinated energy drinks would be something I would consume on a regular basis.
My family background also plays a part in this story. I am the oldest of 4 siblings, the youngest of which is a half-brother. Our mother divorced the father of us three older three siblings in 1987, after he got drunk and hit her in the face with a 2” X 4”. Some straw, said the camel, after its back had been broken. Throughout the rest of my life, our father would be, at best, a sporadic presence with unpredictable affect.
My mother, co-dependent as she was, immediately fell into the arms of my stepfather and remarried. Together, they had a son, our half-brother, almost immediately after. In the beginning, as it is with many abusers, life was pleasantly normal.
He plied us with new clothes, when our father left our family so destitute we had to beg for food at the church. He even rented a beautiful home for us right next door to the elementary school I was attending! These were luxuries we had never before had, and those luxuries were the 30 pieces of silver for which my mother unwittingly sold her children’s innocence.
I arrived in junior high school emotionally scarred. Horribly shy, I covered my budding frame in the baggiest clothes I could find, using them as a shield from any unwanted sexual attraction. I had a very small circle of friends who participated in activities that I used as outlets for my home life: band, track, video games, and Magic cards. I don't know if they had any idea what was going on at home, but I know they didn't judge me on anything but my own merit, and for that I am still grateful.
Almost immediately, I bonded with my best friend, Jessica Smith, and her family. They would become not only lifelong friends, but also a part of my chosen family that has a very special place in my heart. As my home life would continue to deteriorate, they would be the stable presence that every child needs in their life. I am certain that without them, and their unbelievable kindness to me, I would not be where I am today.
This is the backdrop on which my narcolepsy story begins.
Imagine, for a moment, that you are me at 15. A shy, awkward dreamer with a creative streak a mile wide, but haunted by twin specters of rejection and self-doubt. One day, I'm in my room, enjoying the freedom from those specters that comes only when I'm alone, dancing to music that only I can hear. But wait... Do you hear that? Is is someone coming up the stairs to the room?!
At this moment, narcolepsy comes crashing into my life with a surprising violence. The fear and embarrassment trigger a waking sleep paralysis, known as cataplexy, and I go crashing to the floor. Of course, I wouldn't find this out until years later. All I knew at first, through the haze of shock and pain, was that I had injured my knee so badly that I couldn't even walk, and the sight of how swollen it was after just a few moments shook me to the core.
My screams drew the attention of my mom and stepdad, who promptly go into dutiful parent mode. The ensuing doctor's visit confirms that my kneecap had dislocated, but gives me no reason why. When the swelling and weakness stubbornly refuse to subside a week later, I'm given an orthopedic specialist consultation. He finds that I've chipped off a piece of my kneecap, which is floating around in the joint and must be removed, and the damage repaired.
I go into the first of 5 successive knee surgeries knowing that there had to be some reason for my kneecap to just dislocate like that, but was left to wonder why I was the only one who did. Like so many other things in life, it would be something I would have to figure out on my own.
Thursday, August 29, 2013
FDA's Narcolepsy Patient-focused Meeting - Your Input Wanted!
The FDA is conducting a narcolepsy patient-focused meeting on September 24th, both in-person and via the web.
Why is this important to me, you ask?
This meeting helps educate decision makers at the FDA, and will shape the future of narcolepsy treatments.
Narcolepsy will only get more attention and better treatments if all of us give our input and show that not only do we need better care - we are willing to do what it takes to get it, too!
Unite Narcolepsy is spearheading the initiative, and is inviting both people with narcolepsy AND their loved ones to participate in an anonymous, confidential survey to capture the variations in patient experiences. Your input can help capture this very important information!
Every little bit helps! Please take a moment to contribute your information toward this very important opportunity to get our collective voices heard.
Why is this important to me, you ask?
This meeting helps educate decision makers at the FDA, and will shape the future of narcolepsy treatments.
Narcolepsy will only get more attention and better treatments if all of us give our input and show that not only do we need better care - we are willing to do what it takes to get it, too!
Unite Narcolepsy is spearheading the initiative, and is inviting both people with narcolepsy AND their loved ones to participate in an anonymous, confidential survey to capture the variations in patient experiences. Your input can help capture this very important information!
Every little bit helps! Please take a moment to contribute your information toward this very important opportunity to get our collective voices heard.
Friday, August 16, 2013
Working, narcolepsy, and life
First, I want to apologize for having dropped off the face of the blogosphere. This post will explain why, if you bear with me.
Second, I wanted to share with you all that I have come to the realization that a typical 9-5 office job is no longer something I am capable of having over the long-term. I've also realized that I want to go back to school for a computer science degree. Computer programming is something I've not only a newfound passion for, but something I can do from home.
Third, the reason being for this is that the demands of an office job are simply too much for me to handle being a person with narcolepsy. This is why.
I simply cannot tolerate the stimulants that are given to most people with narcolepsy. Auto-immune disorders and their symptoms are exacerbated by stress, and stimulants can exaggerate the stress response, and even lower the stress threshold. Xyrem helps with the excessive daytime sleepiness, but I still find myself struggling to maintain mental clarity and focus during some parts of the day.
Like your typical office, we suffer from the 10% of the workers doing 90% of the work affliction. Guess who is in the 10%? Yup, yours truly. My supervisors have me doing the work of 3 people. And no matter how hard I try, I can't get things off my plate without having new things added. Worse, normal people could probably handle this, and would do so by simply adding more work hours to their day. But I can't do that. Why?
Here is my typical day.
6:30-7:30 am: Wake up. This time depends on how stressed out I am, and how well I slept that night. Early is good, later is usually a bad sign.
8:30-9:30 am: Arrive at work. I have a hard time being able to be in by 9, but I'm lucky that my office is somewhat flexible.
8:30-10:30 am: Spend a couple hours easing in to work, clearing the cobwebs of sleep from my head. Mornings are not my strong suit, so I use them to catch up with whatever's landed in my inbox.
11:00 am ish: Eat lunch at my desk because I use the half-hour I get for lunch to take my nap. Even though the federal government recognizes my disability and accommodates it to a certain extent, I must use my lunch time for naps. If I go over half an hour, I must use my own vacation time to make up for it.
Somewhere between 12:00 and 1:00 pm: Head starts to get fuzzy, concentration goes out the window, I get cranky and listless. This means it's nap time. I go downstairs to the small clinic we have at work, set up the cot I have been allowed to use, and hope that I can generate enough body heat to fall asleep in the frigid clinic within the half-hour allotted.
Half an hour later: Wake up and go back to work.
2:00-5:30 pm: This is the most productive time of day for me. I'm at the peak of alertness, and I get more done during this block of time than the rest of the day combined.
6:00-7:00 pm: Arrive home from work. Honolulu traffic can be atrocious sometimes. I usually focus on taking care of dinner for myself and my family as soon as I get home.
8:00-9:00 pm: Either go to the gym, or do some chores around the house. My boyfriend has teenage kids, and it gets a little crazy around here. If I'm lucky, I get enough time to pack myself lunch for the next day.
8:30-9:30 pm ish: Start getting ready for bed. I shower at night so I can get ready faster in the morning.
No later than 10:00 pm: I'm in bed, and I've taken my Xyrem.
1:30 am: Second dose of Xyrem.
6:30-7:30 am: Wake up again the following day and do it all over again.
Where do I have ANY free time in here to give to work? All my hobbies have pretty much laid in neglect. My friends are constantly hounding me because they never get to see me. I can't sacrifice sleep, because to do so would mean endangering my health.
When I lose even an hour of sleep, my immune system suffers. The one and only time I've gone to bed 2 hours late, I was out sick for 3 days afterwards because of it.
Can you see my dilemma? The delicate balancing act I perform every day? It is draining, and I'm losing the battle. I have no vacation time on the books, in fact, I'm in the red.
My boyfriend is away for work for a little while, and being the single parent to his teenagers is an additional stressor that I bear out of love for him and the kids. They are awesome people, but still teenagers, and it's not easy having to keep after them to help around the house, or do their homework, or even just communicate with me.
I'm not losing the battle with narcolepsy though, I just need to change the battlefield. Going to college as a 30 year old is going to be interesting to say the least, but thankfully, I have the GI Bill to help me pay my way through. It's going to be tough losing that income, but it's not something I could have kept anyway. I can't live in fear of change.
I can live in gratitude for the support I have in my family and friends, and I can live in hope for the future.
Second, I wanted to share with you all that I have come to the realization that a typical 9-5 office job is no longer something I am capable of having over the long-term. I've also realized that I want to go back to school for a computer science degree. Computer programming is something I've not only a newfound passion for, but something I can do from home.
Third, the reason being for this is that the demands of an office job are simply too much for me to handle being a person with narcolepsy. This is why.
I simply cannot tolerate the stimulants that are given to most people with narcolepsy. Auto-immune disorders and their symptoms are exacerbated by stress, and stimulants can exaggerate the stress response, and even lower the stress threshold. Xyrem helps with the excessive daytime sleepiness, but I still find myself struggling to maintain mental clarity and focus during some parts of the day.
Like your typical office, we suffer from the 10% of the workers doing 90% of the work affliction. Guess who is in the 10%? Yup, yours truly. My supervisors have me doing the work of 3 people. And no matter how hard I try, I can't get things off my plate without having new things added. Worse, normal people could probably handle this, and would do so by simply adding more work hours to their day. But I can't do that. Why?
Here is my typical day.
6:30-7:30 am: Wake up. This time depends on how stressed out I am, and how well I slept that night. Early is good, later is usually a bad sign.
8:30-9:30 am: Arrive at work. I have a hard time being able to be in by 9, but I'm lucky that my office is somewhat flexible.
8:30-10:30 am: Spend a couple hours easing in to work, clearing the cobwebs of sleep from my head. Mornings are not my strong suit, so I use them to catch up with whatever's landed in my inbox.
11:00 am ish: Eat lunch at my desk because I use the half-hour I get for lunch to take my nap. Even though the federal government recognizes my disability and accommodates it to a certain extent, I must use my lunch time for naps. If I go over half an hour, I must use my own vacation time to make up for it.
Somewhere between 12:00 and 1:00 pm: Head starts to get fuzzy, concentration goes out the window, I get cranky and listless. This means it's nap time. I go downstairs to the small clinic we have at work, set up the cot I have been allowed to use, and hope that I can generate enough body heat to fall asleep in the frigid clinic within the half-hour allotted.
Half an hour later: Wake up and go back to work.
2:00-5:30 pm: This is the most productive time of day for me. I'm at the peak of alertness, and I get more done during this block of time than the rest of the day combined.
6:00-7:00 pm: Arrive home from work. Honolulu traffic can be atrocious sometimes. I usually focus on taking care of dinner for myself and my family as soon as I get home.
8:00-9:00 pm: Either go to the gym, or do some chores around the house. My boyfriend has teenage kids, and it gets a little crazy around here. If I'm lucky, I get enough time to pack myself lunch for the next day.
8:30-9:30 pm ish: Start getting ready for bed. I shower at night so I can get ready faster in the morning.
No later than 10:00 pm: I'm in bed, and I've taken my Xyrem.
1:30 am: Second dose of Xyrem.
6:30-7:30 am: Wake up again the following day and do it all over again.
Where do I have ANY free time in here to give to work? All my hobbies have pretty much laid in neglect. My friends are constantly hounding me because they never get to see me. I can't sacrifice sleep, because to do so would mean endangering my health.
When I lose even an hour of sleep, my immune system suffers. The one and only time I've gone to bed 2 hours late, I was out sick for 3 days afterwards because of it.
Can you see my dilemma? The delicate balancing act I perform every day? It is draining, and I'm losing the battle. I have no vacation time on the books, in fact, I'm in the red.
My boyfriend is away for work for a little while, and being the single parent to his teenagers is an additional stressor that I bear out of love for him and the kids. They are awesome people, but still teenagers, and it's not easy having to keep after them to help around the house, or do their homework, or even just communicate with me.
I'm not losing the battle with narcolepsy though, I just need to change the battlefield. Going to college as a 30 year old is going to be interesting to say the least, but thankfully, I have the GI Bill to help me pay my way through. It's going to be tough losing that income, but it's not something I could have kept anyway. I can't live in fear of change.
I can live in gratitude for the support I have in my family and friends, and I can live in hope for the future.
Wednesday, May 8, 2013
Having life dictated by your sleep schedule is NOT a luxury.
Despite what the other people at work may think.
I come into work at 9:00 am. Not because I want to, but because I have to. The people at work think it's a luxury though, and I get such snide comments as "It must be nice to be able to waltz in at 9 am." But what they haven't seen is the consequences of what happens when I don't. Until today, I hadn't either.
Yesterday I had to be at work at 7:30 am to attend a class. I figured that as long as I could go to bed early enough, I'd be okay. But when I woke up at 6:00 am and could barely think straight, I knew it was a bad idea.
I was in a mental fog all morning, which was great for my information retention. (I'm using italics for my sarcasm font.) But the worst part was today, when I felt the fatigue hit me, like a rainstorm that soaked me through to the bone. By the time 3:00 pm hit, I couldn't stand it any more. I knew that I had burned through all the productivity I had in me. I went home and slept until 6:30 pm.
I'm never waking up early again, whether I want to or not.
I come into work at 9:00 am. Not because I want to, but because I have to. The people at work think it's a luxury though, and I get such snide comments as "It must be nice to be able to waltz in at 9 am." But what they haven't seen is the consequences of what happens when I don't. Until today, I hadn't either.
Yesterday I had to be at work at 7:30 am to attend a class. I figured that as long as I could go to bed early enough, I'd be okay. But when I woke up at 6:00 am and could barely think straight, I knew it was a bad idea.
I was in a mental fog all morning, which was great for my information retention. (I'm using italics for my sarcasm font.) But the worst part was today, when I felt the fatigue hit me, like a rainstorm that soaked me through to the bone. By the time 3:00 pm hit, I couldn't stand it any more. I knew that I had burned through all the productivity I had in me. I went home and slept until 6:30 pm.
I'm never waking up early again, whether I want to or not.
Wednesday, May 1, 2013
Creating Jobs For People With Disabilities
At my narcolepsy support group, we discussed what it was that PWN need most that they don't have: alternative employment options. I had a few ideas, but it wasn't until yesterday that I had a real winner.
What if, instead of the traditional labor market where people are hired for hourly increments, there was the option to hire someone to complete a specific task? This would allow under-employed, unemployed, and disabled persons to contribute to society in a way that they currently cannot.
Just think. How many times have you needed help as an individual or company, but not known where to turn for a task that doesn't require hiring someone for the long term? Babysitting, grocery shopping, ordering supplies, even network management and computer programming could be accessible from your fingertips.
If you think this is an idea worth exploring, please sign my petition at: https://petitions.whitehouse.gov/petition/create-task-based-job-pool-allow-disabled-and-underemployed-americans-chance-contribute-economic/gGwKgZpZ
This could be the opportunity PWN have been waiting for to show the world that we are not our disease! The only way to know for sure is to lend your support.
What if, instead of the traditional labor market where people are hired for hourly increments, there was the option to hire someone to complete a specific task? This would allow under-employed, unemployed, and disabled persons to contribute to society in a way that they currently cannot.
Just think. How many times have you needed help as an individual or company, but not known where to turn for a task that doesn't require hiring someone for the long term? Babysitting, grocery shopping, ordering supplies, even network management and computer programming could be accessible from your fingertips.
If you think this is an idea worth exploring, please sign my petition at: https://petitions.whitehouse.gov/petition/create-task-based-job-pool-allow-disabled-and-underemployed-americans-chance-contribute-economic/gGwKgZpZ
This could be the opportunity PWN have been waiting for to show the world that we are not our disease! The only way to know for sure is to lend your support.
Saturday, April 27, 2013
Joe Narcoleptic and the Movies
So I went to go see GI Joe: Retaliation tonight with the family, thinking it would be just another fun movie with explosions and kicking of large amounts of butt. As with many things, I was wrong.
There is a prison in this movie, where scientists have engineered a drug that puts the body into the same paralysis experienced during REM sleep, leaving the victim conscious but unable to move.
Gee, does that sound familiar to anyone? The thing that kills me is that the writers probably thought they had just come up with one of the most terrifying ideas for a prison that they could think of, and that is every day life for someone who suffers from narcolepsy with cataplexy. I wish I could find some way to find the writer who "came up" with that concept, and say "Yes! This is what we have to deal with every day! Now do you see? Will you help us raise awareness so that we can come closer to a cure?"
But I can't. I can just shake my head, write in my blog, and hope that some day my dreams come true.
There is a prison in this movie, where scientists have engineered a drug that puts the body into the same paralysis experienced during REM sleep, leaving the victim conscious but unable to move.
Gee, does that sound familiar to anyone? The thing that kills me is that the writers probably thought they had just come up with one of the most terrifying ideas for a prison that they could think of, and that is every day life for someone who suffers from narcolepsy with cataplexy. I wish I could find some way to find the writer who "came up" with that concept, and say "Yes! This is what we have to deal with every day! Now do you see? Will you help us raise awareness so that we can come closer to a cure?"
But I can't. I can just shake my head, write in my blog, and hope that some day my dreams come true.
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