Friday, March 9, 2012
Monday, January 2, 2012
REM Runner: So, You Want To Start A Blog? REM Runner's Guide to Reaching Blogosphere Nirvana
Want to learn from the best? Here's some great tips from award winning blogger, Julie Flygare aka REM Runner, on how to start your own blog. Julie Flygare has gained national attention for her Blog remrunner.blogspot.com where she documented her training for the Boston Marathon to raise awareness for Narcolepsy. She has also been published in Avalon and I AM Modern. Enjoy!!
REM Runner: So, You Want To Start A Blog? REM Runner's Guide to Reaching Blogosphere Nirvana
REM Runner: So, You Want To Start A Blog? REM Runner's Guide to Reaching Blogosphere Nirvana
Thursday, December 29, 2011
Accepting and Embracing Narcolepsy
Over the years, I don't know who I struggled harder to gain approval from, employers, friends, family members or myself. One would think that the answer would be an easy one, but it's not that easy when it comes to hidden illnesses. Out of sight, out of mind definitely applies to Narcolepsy. As a society, we expect to be able to see visual proof of anything that is hard to understand. We have become so dependant on proof that we forget that somethings shouldn't have to be proven. With all that we have and all that we have accomplished as human beings, we seem to have lost natural compassion. We judge first, ask questions later. It's too easy to draw our own conclusions based on what we see and forget to consider the unseen.
Don't get me wrong, we have evolved over the years. People with visual disabilities have gained more and more compassion as time goes on but not without a fight. Why do we have to continuously fight with each other over things that shouldn't matter? It shouldn't matter if a person can't see, hear or walk and it shouldn't matter if my brain doesn't allow me to naturally sleep. But apparently it does matter because people with disabilities continue to fight for the freedoms that a "normal" person takes for granted. And the harder to see the disability, the less likely that anyone will help you.
But it doesn't have to be this way. You don't have to be a statistic. Change starts with you!! Each person that says "No" to discrimination is saying "Yes I will try to understand". Each person that spreads awareness, spreads understanding, compassion, knowledge and change. Do you have Narcolepsy? If you said yes than stop allowing those that don't understand to label you. Don't spread the hate by hating them back. Stop and ask yourself why that person is the way they are. Maybe they too have reason for thinking the way they do. By labeling them, we become hypocrites.
We have three options to combat Discrimination. One is to ignore it. Don't waste your precious energy on negative energy. For most of us with Narcolepsy, stress is the number one reason for our symptoms to flare up so find a way to ignore it. Sometimes that means disassociating yourself from those that don't try to understand you or that put you down due to your condition. Option number two, combat discrimination with knowledge. The more you know, the stupider they look. For example, if someone says, "I don't think Narcolepsy is a real. I have never met anyone else that claims to have it." You can come back with the comment, "Studies show that Narcolepsy affects one in every 2,000 people.". By doing this, you don't fuel the hate AND you educate them at the same time. The third option is raise awareness at every opportunity you can. The more they know, the less they judge. Everyday I make it appoint to educate someone on Narcolepsy. I find a way to bring it up casually in a conversation and drop a little tid bit of information. It's amazing how many people actually start asking questions and want to learn more. It's even more surprising when they say, "I wonder if that's what Jane has. I'll have to let her know".
I recently decided to try to stop blaming others for their ignorance. I don't think that people intentionally try to be rude and not understand. They are just as afraid as I am about Narcolepsy but since they don't have to deal with it on an every day basis it's easier for them to ignore it. When it comes to family members, I try to remember that Narcolepsy is an adjustment for everyone. It isn't an easy disorder to acknowledge or accept. Nobody wants to accept that something was wrong with their child and they didn't notice it and I don't think it's uncommon for denial to take place.
I don't blame my parents for not being diagnosed earlier in life but I might not have always felt that way. Once I learned how to get past resentment, it allowed me to look at things from their perspective. How were they to know the difference between "normal teenage behavior" and Narcolepsy? It's not like children come with an instruction manual and I was their first born. My symptoms showed up around age 11 and to those closest to me it appeared to just be part of who I was. No matter where we were going, I was asleep before we left the driveway. I was born late and never caught up. I always fell asleep in classes, especially right after lunch. These are just a few of the things associated with who I am. So to those around me, it's harder to grasp the concept of Narcolepsy.
Family members aren't the only ones that have had a hard time grasping the idea of Narcolepsy. I have lost touch with more friends in my life due to Narcolepsy. After my managing my full-time job and family, there isn't much time for friends. I doubt most people that I know would even know that I have Narcolepsy. It's not exactly a topic brought up at social occasions and when it is, it's more of a mentioning than anything. Just like family members, my friends tend to associate many of my Narcolepsy symptoms as part of who I am. I guess, in my strive to gain approval, I tend to use excuses that are easier to understand instead of trying to explain Narcolepsy.
In the end, the only approval that matters is my own. By accepting my Narcolepsy and embracing my symptoms and treatments, I can move on to living my life. I may have struggled throughout my life with Narcolepsy but it is not who I am, it's only a part of who I am. I have to accept it before others around me will accept it. I have to embrace it before others will embrace it. As a wise woman, Julie Flygare, once wrote, "Say it loud and say it proud". I'm a person with Narcolepsy and I am proud.
Don't get me wrong, we have evolved over the years. People with visual disabilities have gained more and more compassion as time goes on but not without a fight. Why do we have to continuously fight with each other over things that shouldn't matter? It shouldn't matter if a person can't see, hear or walk and it shouldn't matter if my brain doesn't allow me to naturally sleep. But apparently it does matter because people with disabilities continue to fight for the freedoms that a "normal" person takes for granted. And the harder to see the disability, the less likely that anyone will help you.
But it doesn't have to be this way. You don't have to be a statistic. Change starts with you!! Each person that says "No" to discrimination is saying "Yes I will try to understand". Each person that spreads awareness, spreads understanding, compassion, knowledge and change. Do you have Narcolepsy? If you said yes than stop allowing those that don't understand to label you. Don't spread the hate by hating them back. Stop and ask yourself why that person is the way they are. Maybe they too have reason for thinking the way they do. By labeling them, we become hypocrites.
We have three options to combat Discrimination. One is to ignore it. Don't waste your precious energy on negative energy. For most of us with Narcolepsy, stress is the number one reason for our symptoms to flare up so find a way to ignore it. Sometimes that means disassociating yourself from those that don't try to understand you or that put you down due to your condition. Option number two, combat discrimination with knowledge. The more you know, the stupider they look. For example, if someone says, "I don't think Narcolepsy is a real. I have never met anyone else that claims to have it." You can come back with the comment, "Studies show that Narcolepsy affects one in every 2,000 people.". By doing this, you don't fuel the hate AND you educate them at the same time. The third option is raise awareness at every opportunity you can. The more they know, the less they judge. Everyday I make it appoint to educate someone on Narcolepsy. I find a way to bring it up casually in a conversation and drop a little tid bit of information. It's amazing how many people actually start asking questions and want to learn more. It's even more surprising when they say, "I wonder if that's what Jane has. I'll have to let her know".
I recently decided to try to stop blaming others for their ignorance. I don't think that people intentionally try to be rude and not understand. They are just as afraid as I am about Narcolepsy but since they don't have to deal with it on an every day basis it's easier for them to ignore it. When it comes to family members, I try to remember that Narcolepsy is an adjustment for everyone. It isn't an easy disorder to acknowledge or accept. Nobody wants to accept that something was wrong with their child and they didn't notice it and I don't think it's uncommon for denial to take place.
I don't blame my parents for not being diagnosed earlier in life but I might not have always felt that way. Once I learned how to get past resentment, it allowed me to look at things from their perspective. How were they to know the difference between "normal teenage behavior" and Narcolepsy? It's not like children come with an instruction manual and I was their first born. My symptoms showed up around age 11 and to those closest to me it appeared to just be part of who I was. No matter where we were going, I was asleep before we left the driveway. I was born late and never caught up. I always fell asleep in classes, especially right after lunch. These are just a few of the things associated with who I am. So to those around me, it's harder to grasp the concept of Narcolepsy.
Family members aren't the only ones that have had a hard time grasping the idea of Narcolepsy. I have lost touch with more friends in my life due to Narcolepsy. After my managing my full-time job and family, there isn't much time for friends. I doubt most people that I know would even know that I have Narcolepsy. It's not exactly a topic brought up at social occasions and when it is, it's more of a mentioning than anything. Just like family members, my friends tend to associate many of my Narcolepsy symptoms as part of who I am. I guess, in my strive to gain approval, I tend to use excuses that are easier to understand instead of trying to explain Narcolepsy.
In the end, the only approval that matters is my own. By accepting my Narcolepsy and embracing my symptoms and treatments, I can move on to living my life. I may have struggled throughout my life with Narcolepsy but it is not who I am, it's only a part of who I am. I have to accept it before others around me will accept it. I have to embrace it before others will embrace it. As a wise woman, Julie Flygare, once wrote, "Say it loud and say it proud". I'm a person with Narcolepsy and I am proud.
Sunday, December 11, 2011
Career with Narcolepsy
Not to long ago, I took a leap of faith and made an appointment with my Sleep Specialist, whom I haven't actually seen in about 10 years or so. One may ask, "Why is this a leap of faith?" I would in turn reply, "Well, because I may be setting myself up for major disappointment." In order to understand how this could be a disappointment, one must understand the outcome of my last visit.
When I was diagnosed with Narcolepsy I had a huge misconception that once I was put on medication, all would be fine. I mean the Doctor had made it seem like it wasn't a big deal to have Narcolepsy. In his defense, I was his first patient with Narcolepsy he had ever had, and he'd been a doctor for a long time. It wasn't all better, all was not fine, it was a BIG deal. I, however, accepted my fate, my life and embarked on a long journey of constant ridicule about being tired, late, lazy, etc.
To begin with, my medicine was expensive. I was in my early twenties, had a toddler, was working part-time and trying to go to school. My medicine was still around $200 a month (after insurance). I didn't know my options at the time, I just knew I couldn't afford it. I would try to buy it here and there but most of the time in the first few years I went without. I basically lived in a huge brain fog and nobody understood. I didn't have anybody who TRULY understood. I got the usual, "Try harder", "Go to bed earlier" and the famous "Suck it up, all parents are tired" Well, the mass majority MUST be right, right?
A few more years would go by, managed to graduate from college with my Associates Degree in Accounting and I WAS ECSTATIC!! I DID IT!! Now time to find a real job. I had been working for Burger King off and on for years but I wanted something more, something important, somewhere I could grow into the person I had always dreamed I'd become. I was tired of being this person. This person, who was always tired and had become every negative statistic I could find. College Dropout. Burger King Lifer. Unmarried Mother.
I began my search and landed an entry level position in a Accounts Payable department. Perfect. I loved it!! And within a few months I became an easy target. I explained my Narcolepsy to them but the didn't understand. Narcolepsy was not an excuse to be late to work. People began to whisper. They began to give me looks that made me want to crawl in a hole and hide. Needless to say, I was let go. Rumors had it I as punching in and leaving the building, coming back and punching out. Huh, what? Of course, no supervisor had witnessed this accusation but, none the less, I was fired. And heartbroken. And I needed a job.
I searched for a couple weeks, without success, before I ended up back at Burger King. Shortly thereafter, I was offered a management position. I struggled for a bit with upper management about my Narcolepsy but after a doctors note and getting back on my Provigil, they began to come around. It helped that I was an extremely good manager and that I was the best at achieving numbers we needed to achieve. We'd occasionally struggle about me being late but they saw how hard I tried and I usually wasn't more than 10 minutes late and I was ALWAYS willing to stay late or come in on my days off so they took the good with the bad and accepted it.
In the end, I was a First Assistant Manager directly below the Store Manager and my prospect of eventually having my own store was high but the hours took a toll on my Narcolepsy and although I highly enjoyed what I did, I yearned for more. My mother convinced me and my fiance to apply at a factory close by. If hired, we'd have to move to another town and start over. The starting pay was really good. We could save up our money and go back to school. We could follow our dreams. It would be a fresh start in a fresh environment. The temptation won, we were hired and we moved.
Due to reasons completely unrelated to my Narcolepsy, we lost those jobs. Two months before a huge layoff, we were let go during our probationary period. My fiance got a new job, with benefits, so we decided to move up our wedding date so I would still be able to have insurance for me and my daughter. We got married, I started online classes and a couple months later I got pregnant. We needed money, so I started another part time job. I started at minimum wage. The hours were awful and my Narcolepsy become truly unbearable and they were not even a little understanding of my Narcolepsy. If they made exceptions for me, they'd have to make exceptions for everybody.
A Wal-Mart was opening up in the next town over, so I applied. At the job interview, I told the Manager about my Narcolepsy and she assured me they'd figure something out. Things went well for about a year and a half. I LOVED working with people AND I was learning new things all the time. Plus, as long as I stayed busy all day, I didn't have any sleep attacks. I was a little late here and there but nobody seemed to notice or say anything.
I was in charge of the Connection Center (cell phones) plus I was cross trained in Electronics, Photo Lab, Sporting Goods, Hardware, Cashier, Customer Service AND I could fill in for the Customer Service Supervisors. I had more diversity than ANYONE in the store. Managers and customers seemed to love me. I always had goals and was good at motivating those around me. For awhile I was even doing the schedule for my department since I knew my area the best.
Like I said, it went well for about a year and a half. And than another manager came to the day shift from the night shift. She liked to party and had already developed a relationship with those that liked to party as much as she did. I was not one of them. Things changed very fast. I started getting talked to about things that had never been a problem before. I had to officially apply for "Reasonable Accommodations" from the corporate office. I was denied. "Narcolepsy is no excuse to be late for work or fall asleep at work."
First of all, "uh yes, by definition, it would be a very valid excuse for falling asleep at work BUT that wasn't why I was applying." I was usually late by about 10 minutes once or twice a week, and that was grounds for termination. They never did give me the forms I needed to appeal my denial but they found other reasons to fire me. This one manager, looked at everything and anything I did and found enough reasons to "write me up" that I was fired. I must say though, another manager fought hard for me but because the other one did it by the book, her hands were tied.
That takes us to my current employer. I have managed to stay in the cellular industry and I still love what I do but this particular employer is ... very old fashioned. He no longer understands the industry as he once did. He has several businesses that he owns and I guess you could say they are rather successful but times have changed and he hasn't really changed with them. The other managers, like myself, have been able to adapt to both the owners wishes and society's desires and managed to, somewhat, please everyone. It isn't easy, it's rather tiresome but every once and awhile something happens to make it all worth it.
I did inform this owner, during the interview, of my Narcolepsy and yet they still hired me. I have had two competitors try to persuade me to work for them and I did turn them down to stay with my current employer because they convinced me they truly wanted me to stay. I stayed because I felt I owed one of the owner's sons for taking me when Wal-Mart let me go. He no longer is with us and the owner no longer wants to put up with my Narcolepsy. "Maybe you need to find an employer willing to work with your disability" he once said.
Of course, this owner isn't always against me. Once in a blue moon, he is quite nice to me. He butters me up so he can break me down. He doesn't understand what I do to keep his business afloat but that's not the hardest part. The hardest part is that nobody understands my Narcolepsy. They all try to give me "advice" on how to make it better. "Go to bed earlier", "Set your alarm earlier", "Drink more coffee" or "Schedule yourself later" I try to explain that my Narcolepsy is on it's own clock, it's own time and I can't just set it to whatever I wish. I don't like being this way. I don't like to have to explain myself over and over.
During all of this mayhem I call my life, my husband has been my biggest supporter. He has made it possible to survive all the disappointments and ridicule that I have endured. He has always helped me make sure I have my medicine. (Only $30 a month now) He offers to beat up my boss for making me cry. (He doesn't really mean it but says it to prove to me he's behind me 100%) He is a huge nap advocate and knows how to get me out of bed even when I try to convince him to let me stay in it. He does most of the cooking and cleaning around the house and still finds time to snuggle with me.
Unfortunately, my medicine doesn't work like it use to. It helps me get past the first few hours but by lunch time I am a zombie again. I come home, take a twenty minute nap and go back to work. The nap helps for a couple hours and than I enter the fog again. By the time I get home, I need another nap and it is extremely hard not to stay in bed for the rest of the night. At night, my Hypnotic Hallucinations have become unbearable. I frequently wake my husband up in a panic and he has to convince me I was dreaming. Between 2:00 and 5:00am I wake up every twenty minutes making it almost impossible to get up and get ready for work. I have also noticed my Cataplexy (loss of muscle tone usually brought on by sudden or severe emotion) is becoming more frequent. I use to only get it when once in awhile when something was really, really funny but I noticed lately that my knees get weak when something suddenly scares me.
A few years ago, I would have ignored all these changes in my Narcolepsy and chalked it up as "sometimes life sucks" but a few years ago I met another Narcoleptic online. Aaron started opening my eyes to all that is Narcolepsy. I started catching on to things that I never really knew were caused by my Narcolepsy. I learned that some people had it worst than me. My symptoms may have been worse than his but his non-supportive environment made it effect his life more negatively. Because of Aaron my husband saw the other side of the spectrum. My husband pretty much vowed to never let that happen to me. He even wished that somehow we could help Aaron but our resources wouldn't allow for that.
Even though Aaron and I rarely get the chance to talk due to our schedules, he always makes a point to tell me about the latest and greatest in the Narcolepsy world. He always knows about new medicines, treatments or advances in research. I will randomly get emails and messages with links to some new study or finding. He was the first to tell me about Xyrem. Xyrem is a medication that induces and regulates sleep in a Narcoleptic so they can stay asleep. Some have labeled it a "Miracle Drug" or the "Closest thing to a Cure". It is suppose to be really effective but really expensive and hard to get on. I figured the likelihood of me getting on it was slim to none so never bothered checking it out.
About six months ago, Aaron got me invited to an online Facebook support group. What a difference that has made in my life. Hundreds of Narcoleptics in one place. Each one with their own story to tell and their own experience's. People from all walks of life. Young, old, male, female and we all have one thing in common...Narcolepsy. We can laugh and/or cry together, rant together or just talk about life in general together. It's nice. One place in this world where I can honestly and truly be myself. The best part about this group is the support we give each other. We learn from each other. We inspire each other. And it's because of this group and Aaron that I made my doctors appointment.
On Thursday, December 8, 2011, my husband and I went to see my Doctor and I was prescribed Xyrem. All these years I was afraid that there was nothing more that could be done. I thought I would live my life in a huge fog with occasional burst of sunshine and never, ever, again in my lifetime, have a good nights sleep. I figured I would go through life changing employers every few years and have to defend myself and every aspect of my existence to all my family and friends for the rest of my life. Don't get me wrong, any life with my husband and children is a good life, but I want a GREAT life and this medicine could help with that.
I have passed step one of getting on Xyrem by getting my prescription. My next step is to get a call from the manufacture telling me if my insurance approved it and what my share will be. So here's to Step 2 and to beginning a new journey of my life.
When I was diagnosed with Narcolepsy I had a huge misconception that once I was put on medication, all would be fine. I mean the Doctor had made it seem like it wasn't a big deal to have Narcolepsy. In his defense, I was his first patient with Narcolepsy he had ever had, and he'd been a doctor for a long time. It wasn't all better, all was not fine, it was a BIG deal. I, however, accepted my fate, my life and embarked on a long journey of constant ridicule about being tired, late, lazy, etc.
To begin with, my medicine was expensive. I was in my early twenties, had a toddler, was working part-time and trying to go to school. My medicine was still around $200 a month (after insurance). I didn't know my options at the time, I just knew I couldn't afford it. I would try to buy it here and there but most of the time in the first few years I went without. I basically lived in a huge brain fog and nobody understood. I didn't have anybody who TRULY understood. I got the usual, "Try harder", "Go to bed earlier" and the famous "Suck it up, all parents are tired" Well, the mass majority MUST be right, right?
A few more years would go by, managed to graduate from college with my Associates Degree in Accounting and I WAS ECSTATIC!! I DID IT!! Now time to find a real job. I had been working for Burger King off and on for years but I wanted something more, something important, somewhere I could grow into the person I had always dreamed I'd become. I was tired of being this person. This person, who was always tired and had become every negative statistic I could find. College Dropout. Burger King Lifer. Unmarried Mother.
I began my search and landed an entry level position in a Accounts Payable department. Perfect. I loved it!! And within a few months I became an easy target. I explained my Narcolepsy to them but the didn't understand. Narcolepsy was not an excuse to be late to work. People began to whisper. They began to give me looks that made me want to crawl in a hole and hide. Needless to say, I was let go. Rumors had it I as punching in and leaving the building, coming back and punching out. Huh, what? Of course, no supervisor had witnessed this accusation but, none the less, I was fired. And heartbroken. And I needed a job.
I searched for a couple weeks, without success, before I ended up back at Burger King. Shortly thereafter, I was offered a management position. I struggled for a bit with upper management about my Narcolepsy but after a doctors note and getting back on my Provigil, they began to come around. It helped that I was an extremely good manager and that I was the best at achieving numbers we needed to achieve. We'd occasionally struggle about me being late but they saw how hard I tried and I usually wasn't more than 10 minutes late and I was ALWAYS willing to stay late or come in on my days off so they took the good with the bad and accepted it.
In the end, I was a First Assistant Manager directly below the Store Manager and my prospect of eventually having my own store was high but the hours took a toll on my Narcolepsy and although I highly enjoyed what I did, I yearned for more. My mother convinced me and my fiance to apply at a factory close by. If hired, we'd have to move to another town and start over. The starting pay was really good. We could save up our money and go back to school. We could follow our dreams. It would be a fresh start in a fresh environment. The temptation won, we were hired and we moved.
Due to reasons completely unrelated to my Narcolepsy, we lost those jobs. Two months before a huge layoff, we were let go during our probationary period. My fiance got a new job, with benefits, so we decided to move up our wedding date so I would still be able to have insurance for me and my daughter. We got married, I started online classes and a couple months later I got pregnant. We needed money, so I started another part time job. I started at minimum wage. The hours were awful and my Narcolepsy become truly unbearable and they were not even a little understanding of my Narcolepsy. If they made exceptions for me, they'd have to make exceptions for everybody.
A Wal-Mart was opening up in the next town over, so I applied. At the job interview, I told the Manager about my Narcolepsy and she assured me they'd figure something out. Things went well for about a year and a half. I LOVED working with people AND I was learning new things all the time. Plus, as long as I stayed busy all day, I didn't have any sleep attacks. I was a little late here and there but nobody seemed to notice or say anything.
I was in charge of the Connection Center (cell phones) plus I was cross trained in Electronics, Photo Lab, Sporting Goods, Hardware, Cashier, Customer Service AND I could fill in for the Customer Service Supervisors. I had more diversity than ANYONE in the store. Managers and customers seemed to love me. I always had goals and was good at motivating those around me. For awhile I was even doing the schedule for my department since I knew my area the best.
Like I said, it went well for about a year and a half. And than another manager came to the day shift from the night shift. She liked to party and had already developed a relationship with those that liked to party as much as she did. I was not one of them. Things changed very fast. I started getting talked to about things that had never been a problem before. I had to officially apply for "Reasonable Accommodations" from the corporate office. I was denied. "Narcolepsy is no excuse to be late for work or fall asleep at work."
First of all, "uh yes, by definition, it would be a very valid excuse for falling asleep at work BUT that wasn't why I was applying." I was usually late by about 10 minutes once or twice a week, and that was grounds for termination. They never did give me the forms I needed to appeal my denial but they found other reasons to fire me. This one manager, looked at everything and anything I did and found enough reasons to "write me up" that I was fired. I must say though, another manager fought hard for me but because the other one did it by the book, her hands were tied.
That takes us to my current employer. I have managed to stay in the cellular industry and I still love what I do but this particular employer is ... very old fashioned. He no longer understands the industry as he once did. He has several businesses that he owns and I guess you could say they are rather successful but times have changed and he hasn't really changed with them. The other managers, like myself, have been able to adapt to both the owners wishes and society's desires and managed to, somewhat, please everyone. It isn't easy, it's rather tiresome but every once and awhile something happens to make it all worth it.
I did inform this owner, during the interview, of my Narcolepsy and yet they still hired me. I have had two competitors try to persuade me to work for them and I did turn them down to stay with my current employer because they convinced me they truly wanted me to stay. I stayed because I felt I owed one of the owner's sons for taking me when Wal-Mart let me go. He no longer is with us and the owner no longer wants to put up with my Narcolepsy. "Maybe you need to find an employer willing to work with your disability" he once said.
Of course, this owner isn't always against me. Once in a blue moon, he is quite nice to me. He butters me up so he can break me down. He doesn't understand what I do to keep his business afloat but that's not the hardest part. The hardest part is that nobody understands my Narcolepsy. They all try to give me "advice" on how to make it better. "Go to bed earlier", "Set your alarm earlier", "Drink more coffee" or "Schedule yourself later" I try to explain that my Narcolepsy is on it's own clock, it's own time and I can't just set it to whatever I wish. I don't like being this way. I don't like to have to explain myself over and over.
During all of this mayhem I call my life, my husband has been my biggest supporter. He has made it possible to survive all the disappointments and ridicule that I have endured. He has always helped me make sure I have my medicine. (Only $30 a month now) He offers to beat up my boss for making me cry. (He doesn't really mean it but says it to prove to me he's behind me 100%) He is a huge nap advocate and knows how to get me out of bed even when I try to convince him to let me stay in it. He does most of the cooking and cleaning around the house and still finds time to snuggle with me.
Unfortunately, my medicine doesn't work like it use to. It helps me get past the first few hours but by lunch time I am a zombie again. I come home, take a twenty minute nap and go back to work. The nap helps for a couple hours and than I enter the fog again. By the time I get home, I need another nap and it is extremely hard not to stay in bed for the rest of the night. At night, my Hypnotic Hallucinations have become unbearable. I frequently wake my husband up in a panic and he has to convince me I was dreaming. Between 2:00 and 5:00am I wake up every twenty minutes making it almost impossible to get up and get ready for work. I have also noticed my Cataplexy (loss of muscle tone usually brought on by sudden or severe emotion) is becoming more frequent. I use to only get it when once in awhile when something was really, really funny but I noticed lately that my knees get weak when something suddenly scares me.
A few years ago, I would have ignored all these changes in my Narcolepsy and chalked it up as "sometimes life sucks" but a few years ago I met another Narcoleptic online. Aaron started opening my eyes to all that is Narcolepsy. I started catching on to things that I never really knew were caused by my Narcolepsy. I learned that some people had it worst than me. My symptoms may have been worse than his but his non-supportive environment made it effect his life more negatively. Because of Aaron my husband saw the other side of the spectrum. My husband pretty much vowed to never let that happen to me. He even wished that somehow we could help Aaron but our resources wouldn't allow for that.
Even though Aaron and I rarely get the chance to talk due to our schedules, he always makes a point to tell me about the latest and greatest in the Narcolepsy world. He always knows about new medicines, treatments or advances in research. I will randomly get emails and messages with links to some new study or finding. He was the first to tell me about Xyrem. Xyrem is a medication that induces and regulates sleep in a Narcoleptic so they can stay asleep. Some have labeled it a "Miracle Drug" or the "Closest thing to a Cure". It is suppose to be really effective but really expensive and hard to get on. I figured the likelihood of me getting on it was slim to none so never bothered checking it out.
About six months ago, Aaron got me invited to an online Facebook support group. What a difference that has made in my life. Hundreds of Narcoleptics in one place. Each one with their own story to tell and their own experience's. People from all walks of life. Young, old, male, female and we all have one thing in common...Narcolepsy. We can laugh and/or cry together, rant together or just talk about life in general together. It's nice. One place in this world where I can honestly and truly be myself. The best part about this group is the support we give each other. We learn from each other. We inspire each other. And it's because of this group and Aaron that I made my doctors appointment.
On Thursday, December 8, 2011, my husband and I went to see my Doctor and I was prescribed Xyrem. All these years I was afraid that there was nothing more that could be done. I thought I would live my life in a huge fog with occasional burst of sunshine and never, ever, again in my lifetime, have a good nights sleep. I figured I would go through life changing employers every few years and have to defend myself and every aspect of my existence to all my family and friends for the rest of my life. Don't get me wrong, any life with my husband and children is a good life, but I want a GREAT life and this medicine could help with that.
I have passed step one of getting on Xyrem by getting my prescription. My next step is to get a call from the manufacture telling me if my insurance approved it and what my share will be. So here's to Step 2 and to beginning a new journey of my life.
Friday, December 2, 2011
Growing up with Narcolepsy
I remember the first night that I didn't sleep through the whole night. I must have been around 11 years old because I know I was in the 5th Grade. I woke up in the middle of the night to go to the bathroom but before I could get out of bed I noticed the hallway seemed a bit cloudy. At first I just chalked it up to having horrible eye sight but I soon realized that wasn't the case. I was petrified. I couldn't move. All I could do was lay there and watch the fog move down the hallway and the more I focused on it, the more I realized that there were shapes within the fog. Bodily shapes. GHOSTS!!
I didn't know what to do. Were they aggressive? Mean? I couldn't be sure. I did know, however, that I still desperately needed to use the bathroom. Eventually I was able to move so I jumped up and ran to the bathroom. Once I reached the hallway I realized the fog was gone. I went to the bathroom and than ran back into my room and hopped onto my bed.
Within minutes, I watched the fog emerge from the living room back into the hallway and this time it continued to come towards me. I froze. All I could do is stare at it and the closer it got, it began to change colors. It went from a cloudy object to a little lime green ghost that closely resembled, Slimer from Ghostbusters but with an angry face. After a few minutes I was able to shut my eyes and I hoped that if it thought I was asleep it would leave me alone. It reached the bed and I could feel it inching it's way to my head.
Something interrupted this little introduction. My younger sister that's five years younger than me came running into my room and hopped onto my bed to sleep with me. She asked me if I saw the ghost in the hallway and I informed her that I had also seen and witnessed the same ghosts.
To this day, I am not sure if this was a Hypnotic Hallucination/Sleep Paralysis or if our house was actually haunted but I have a few of my own "experienced based theories" on my experience and Narcolepsy.
1) Narcolepsy is triggered by a traumatic experience that interrupts our sleeping pattern.
2) My house was never haunted. My Narcolepsy onset was at age 11.
As one can possible imagine, my parents didn't believe my little "story" and I was punished for being up several hours in panic. Starting that night, I became terrified to sleep at night because my experiences were so horrifying. This caused me to be extremely tired during the day. Excessive Daytime Sleepiness, or EDS, is the most common symptom of Narcolepsy and is often mistaken for laziness. It's described as an unfightable urge to fall asleep at any given time. It is believed that a Narcoleptic feels as tired as a normal person would if they didn't sleep for 48 hours.
It was around this time that I began to experience Cateplexy. Cateplexy is the loss of muscle tone in reaction to a sudden strong emotion. In my case, extreme laughter. When something really funny happens or is said, my body thinks that I am entering a dream state and paralyzes my muscles to prevent me from acting out my dreams. In the beginning, I would fall to the floor. I was so embarrassed because people would laugh at me, which would make me laugh even harder, making the episode last longer. Even my parents would get upset because they figured I was just acting out.
As I got older, the symptoms got worse. Some nights my dreams got so bad that I usually couldn't tell if they were real or not. I began waking up more and more every night causing me to fall asleep more and more during the day. I was constantly late to school and would fall asleep in class. I started to get a lot of detention and no matter how hard I tried, nobody would listen.
Than one day in Art Class my teacher asked me to stay late after class. I figured I was in trouble for falling asleep but what she had to say surprised me greatly. She told me she had been watching me and noticed how hard I struggled to stay awake. She went on to say she thought I had Narcolepsy. Narcolepsy? I couldn't possibly. I don't sleep at night. I have insomnia or something normal like that. It wasn't until years later I would find out how right she was.
I managed to graduate from high school and even though I fell asleep during my ACTs, I managed to pass those too. I went on to college but flunked out my first year. I could never make it to class on time, no matter what time it was. I couldn't make it on time to anything. It didn't matter what time of day or night it was, I was always so tired that I had no concept of time.
My Narcolepsy also effected my ability to drive long distances by myself. Sometimes I would swerve this but most of the time I would go into Automatic Behavior. Automatic behavior is when you basically do something in your sleep as you would if you were awake. I would snap out of it and have no idea where I was. One time I had driven 20 minutes past my exit, at night, in the country and it took me just as long to figure out where I was.
I had my first child at age 20 and it was shortly thereafter that I realized I needed to go see a doctor. The doctor had me do a sleep study and my results were absolute. I had a textbook case of Narcolepsy. An autoimmune disorder that prevents me from staying in the deep sleep state my body needs to repair itself. I was my doctors first case of Narcolepsy. He even had to get out his medical dictionary to help explain what it was and what that meant for me. He prescribed me some stimulants and away I went.
It wasn't until several years later that I realized how many options I truly have. How many medicines there are out there that could help me. This is the beginning of my journey to better my life. To find a way for me and Narcolepsy to co-exist. Welcome to my story.
I didn't know what to do. Were they aggressive? Mean? I couldn't be sure. I did know, however, that I still desperately needed to use the bathroom. Eventually I was able to move so I jumped up and ran to the bathroom. Once I reached the hallway I realized the fog was gone. I went to the bathroom and than ran back into my room and hopped onto my bed.
Within minutes, I watched the fog emerge from the living room back into the hallway and this time it continued to come towards me. I froze. All I could do is stare at it and the closer it got, it began to change colors. It went from a cloudy object to a little lime green ghost that closely resembled, Slimer from Ghostbusters but with an angry face. After a few minutes I was able to shut my eyes and I hoped that if it thought I was asleep it would leave me alone. It reached the bed and I could feel it inching it's way to my head.
Something interrupted this little introduction. My younger sister that's five years younger than me came running into my room and hopped onto my bed to sleep with me. She asked me if I saw the ghost in the hallway and I informed her that I had also seen and witnessed the same ghosts.
To this day, I am not sure if this was a Hypnotic Hallucination/Sleep Paralysis or if our house was actually haunted but I have a few of my own "experienced based theories" on my experience and Narcolepsy.
1) Narcolepsy is triggered by a traumatic experience that interrupts our sleeping pattern.
2) My house was never haunted. My Narcolepsy onset was at age 11.
As one can possible imagine, my parents didn't believe my little "story" and I was punished for being up several hours in panic. Starting that night, I became terrified to sleep at night because my experiences were so horrifying. This caused me to be extremely tired during the day. Excessive Daytime Sleepiness, or EDS, is the most common symptom of Narcolepsy and is often mistaken for laziness. It's described as an unfightable urge to fall asleep at any given time. It is believed that a Narcoleptic feels as tired as a normal person would if they didn't sleep for 48 hours.
It was around this time that I began to experience Cateplexy. Cateplexy is the loss of muscle tone in reaction to a sudden strong emotion. In my case, extreme laughter. When something really funny happens or is said, my body thinks that I am entering a dream state and paralyzes my muscles to prevent me from acting out my dreams. In the beginning, I would fall to the floor. I was so embarrassed because people would laugh at me, which would make me laugh even harder, making the episode last longer. Even my parents would get upset because they figured I was just acting out.
As I got older, the symptoms got worse. Some nights my dreams got so bad that I usually couldn't tell if they were real or not. I began waking up more and more every night causing me to fall asleep more and more during the day. I was constantly late to school and would fall asleep in class. I started to get a lot of detention and no matter how hard I tried, nobody would listen.
Than one day in Art Class my teacher asked me to stay late after class. I figured I was in trouble for falling asleep but what she had to say surprised me greatly. She told me she had been watching me and noticed how hard I struggled to stay awake. She went on to say she thought I had Narcolepsy. Narcolepsy? I couldn't possibly. I don't sleep at night. I have insomnia or something normal like that. It wasn't until years later I would find out how right she was.
I managed to graduate from high school and even though I fell asleep during my ACTs, I managed to pass those too. I went on to college but flunked out my first year. I could never make it to class on time, no matter what time it was. I couldn't make it on time to anything. It didn't matter what time of day or night it was, I was always so tired that I had no concept of time.
My Narcolepsy also effected my ability to drive long distances by myself. Sometimes I would swerve this but most of the time I would go into Automatic Behavior. Automatic behavior is when you basically do something in your sleep as you would if you were awake. I would snap out of it and have no idea where I was. One time I had driven 20 minutes past my exit, at night, in the country and it took me just as long to figure out where I was.
I had my first child at age 20 and it was shortly thereafter that I realized I needed to go see a doctor. The doctor had me do a sleep study and my results were absolute. I had a textbook case of Narcolepsy. An autoimmune disorder that prevents me from staying in the deep sleep state my body needs to repair itself. I was my doctors first case of Narcolepsy. He even had to get out his medical dictionary to help explain what it was and what that meant for me. He prescribed me some stimulants and away I went.
It wasn't until several years later that I realized how many options I truly have. How many medicines there are out there that could help me. This is the beginning of my journey to better my life. To find a way for me and Narcolepsy to co-exist. Welcome to my story.
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