I am back everyone! :)
I am going to talk about my routine in 6th grade.
Get to school
Go to Saftey Patrol
Get to homeroom
Go to first period
Go to second period
Lunch
Eat main hot pocket
Nap
Homework
FLVS
Saftey Patrol
Either Cheer or Dance!
Go Home
SLEEP!
Reapeat
Tuesday, September 11, 2012
Tuesday, August 14, 2012
Amazing
While a person's disability is a part of them, and can sometimes seem like the biggest part, it is just that: one part. Narcolepsy is no fun. It is a burden I would not wish on anyone. Sometimes it breaks my heart to see Narcoleptic struggle through a sleep attack. However, life is what we make of it, not matter what cross we have to bear.
I am so very proud of Narcoleptic. She continues to live each day to the fullest extent possible. She remains on honor roll and competes in cheerleading and science fair. She has friends, is a natural leader and is growing way too fast into a young lady. Narcoleptic is the most sensitive, thoughtful 11 year old I've ever had the privilege to know. This weekend she made her Dad and I breakfast in bed "just because". She tells me almost every day she loves me and that I'm a great mom. Well, she's a great kid. Narcolepsy might contribute to the person she will become, but it will NOT define her. She won't let it. And the person she is to come is going to be simply amazing. Watch out, world.
-Raising a Narcoleptic
I am so very proud of Narcoleptic. She continues to live each day to the fullest extent possible. She remains on honor roll and competes in cheerleading and science fair. She has friends, is a natural leader and is growing way too fast into a young lady. Narcoleptic is the most sensitive, thoughtful 11 year old I've ever had the privilege to know. This weekend she made her Dad and I breakfast in bed "just because". She tells me almost every day she loves me and that I'm a great mom. Well, she's a great kid. Narcolepsy might contribute to the person she will become, but it will NOT define her. She won't let it. And the person she is to come is going to be simply amazing. Watch out, world.
-Raising a Narcoleptic
Monday, August 13, 2012
I love you Aidan!
Hey everyone! It is Narcoleptic here! And I want to tell you about my brother, Aidan! He is the best brother ever! I LOVE HIM SOOOOOOOOOOOO MUCH! But just sometimes he is mean. He says things like:
I hate you!
or I want you to die!
or I want to kill you!
Those types of stuff...
Well, That is a short paragraph of my brother, Aidan!
Sunday, August 12, 2012
Emotional Side of Narcolepsy
Hi it is Narcoleptic, and I am going to write this post about the hardest part of the emotional side of narcolepsy. The meltdowns and the screaming. I mean, being a tween is hard enough. You know, boys, emotional feelings, and just everything! I have had about more than 20 or 25 meltdowns during this and the previous school year. Maybe I am just exaggerating....? But I have cried a LOT! I mean most of the meltdowns is because I am just a girl, and I don't like the shape or size of my body. But, I do think that... I do think that my body shape and size is awful and I hate it.... Because I feel everything I wear makes me look "big". And don't say, "No honey, you look fine and beautiful, but every girl knows in their mind that it isn't. Comment if you have narcolepsy, and have to struggle with your metabolism, and or you feel this way about your body! PLEASE I NEED OTHER PEOPLE WITH NARCOLESY OPINION! Please write your story!
Love,
Narcoleptic!
xoxoxoxoxoxo
to my mom,
for helping
me with
everything!
THAT ONE WENT TO YOU MOM!!!
Love,
Narcoleptic!
xoxoxoxoxoxo
to my mom,
for helping
me with
everything!
THAT ONE WENT TO YOU MOM!!!
Monday, July 23, 2012
Don't give up! You are loved!
ALL THE GIRLS AND BOYS OUT THERE THAT FEEL BAD ABOUT THEMSELVES LISTEN TO THIS:
This video truly makes you cry!
Signs of Narcolepsy or Cataplexy Attack
Well, I talked about my metabolism, my nighttime eating disorder, my sleepiness, and my tween life but I haven't told you about the signs that tell me I am going to fall asleep. You are probably thinking signs? What does she mean? I mean like "colored lights"and "LMBTS" (laughing my body to sleep!) The colored lights means i look around after seeing a bright light and i see colors like blue, pink, or purple and it hurts my eyes. Well when your eyes hurt you close your eyes a lot right? Well, i get sleepy and i can't read anything or my eyes will hurt.
In fourth grade I........
I used to fall asleep while my teacher was reading our story of the week to us. I wouldn't even know what the story was about. But thankfully, I have great friends. If I am asleep and everyone is turning the page my friend will notice me not turning the page. So she wakes me up. And when we read the story it is in the morning at like 9:00 or 10:00 so I fall asleep then. My friend thankfully tells me what the story was about at lunch or recess.
Continuing on about the signs that tell me am going to fall asleep soon.......
The next thing is weak in the LMBTS! I came up with that because everytime someone says something funny or i see something funny I laugh so hard that i have to hold on to something so i don't fall. One time, I was goofing around with my friend and she did something really funny and i started laughing so hard that i had to lay on the floor or i would have a sleep attack. Crazy Huh?
P.S: I got LMBTS by LMHO!
In fourth grade I........
I used to fall asleep while my teacher was reading our story of the week to us. I wouldn't even know what the story was about. But thankfully, I have great friends. If I am asleep and everyone is turning the page my friend will notice me not turning the page. So she wakes me up. And when we read the story it is in the morning at like 9:00 or 10:00 so I fall asleep then. My friend thankfully tells me what the story was about at lunch or recess.
Continuing on about the signs that tell me am going to fall asleep soon.......
The next thing is weak in the LMBTS! I came up with that because everytime someone says something funny or i see something funny I laugh so hard that i have to hold on to something so i don't fall. One time, I was goofing around with my friend and she did something really funny and i started laughing so hard that i had to lay on the floor or i would have a sleep attack. Crazy Huh?
P.S: I got LMBTS by LMHO!
Night Eating Syndrome & Narcolepsy
Body image is already a problem for young girls in America. They are bombarded with images of unrealistically perfect photo-shopped models starving themselves to death. Yay for Seventeen Magazine, who recently agreed to publish 1 spread a month of non-photo-shopped photos of "normal" girls. Entering puberty changes your body and your hormones, and at the same time you start to care what boys think of you. Awesome time, right? Raise your hand if you'd like to go back and relive tweendom.
Well, Narcoleptic here has been really struggling with her weight. We recently discovered she's been getting up and eating high-fat high carb snacks at night. This was initially a source of shame for her. I initially thought it was a choice and she was perhaps sneaking food because she was being limited during the day. Here I thought I was helping her, when in reality I was making her feel deprived so much that she was sneaking and lying to me about it. :(
We had a few heart to hearts and normally when this happens she makes the right choices. The night eating continued. She lied again about it. When confronted in a very gentle manner she cried and said she didn't want to disappoint me. OhMyGod, she's breaking my heart. So, after another heart to heart where I reassured her I just wanted to help her and that I understand, she felt better. I didn't though. I spent several hours researching last night trying to get some insight into how to handle this new development. On the one hand, her overall health is important and she's developing some bad eating habits. On the other hand, I don't want to push dieting on her. I've been trying to model good eating choices and emphasize health versus size. At the same time, getting on a scale and SEEING a difference or putting on pants and FEELING a difference can be very motivating. Another concern for me was any action I took to help her correct the behavior could cause problems with body image permanently. My mother has struggled with that her whole life, and I don't want to create that in my daughter. I have had a weight issue since my early twenties, but I am still pretty confident.
So, anyway, when all of these things are swirling in my head I read. I used to borrow books at the library or buy books at the bookstore, but now I read studies and forums online. :) Well, I found a lot of information. Turns out 30% of narcoleptics are obese. Studies done to determine the cause of the obesity can not find a link to medication nor caloric intake. It appears their endocrine system is affected. Hormones. Lovely. She's already struggling with the most hormonal time in your life.
Then, I found a name for what she's expereincing. Why is it that a label can make you feel not so alone and less freaky? NES: Nighttime Eating Disorder. Lightbulbs starting flashing around me. It is newly researched, but appears to be a type of compulsion similar to binge eating. It is hormonal. Different brain chemistry has been measured in connection with it, and, you guess it: commonly linked with Narcolepsy.
So, what to do? Still working on that. But knowing it's really not a choice, but more of a compulsion gives me direction to work with. I myself was diagnosed with depression and OCD, so I'm familiar with obsessions and compulsions and the high you feel when you eat to ease depression. I can teach her to use the same techniques I use when I am stressed and feel compulsions. It will be tricky though, because I'm asleep when she's suffering.
-Raising a Narcoleptic
Well, Narcoleptic here has been really struggling with her weight. We recently discovered she's been getting up and eating high-fat high carb snacks at night. This was initially a source of shame for her. I initially thought it was a choice and she was perhaps sneaking food because she was being limited during the day. Here I thought I was helping her, when in reality I was making her feel deprived so much that she was sneaking and lying to me about it. :(
We had a few heart to hearts and normally when this happens she makes the right choices. The night eating continued. She lied again about it. When confronted in a very gentle manner she cried and said she didn't want to disappoint me. OhMyGod, she's breaking my heart. So, after another heart to heart where I reassured her I just wanted to help her and that I understand, she felt better. I didn't though. I spent several hours researching last night trying to get some insight into how to handle this new development. On the one hand, her overall health is important and she's developing some bad eating habits. On the other hand, I don't want to push dieting on her. I've been trying to model good eating choices and emphasize health versus size. At the same time, getting on a scale and SEEING a difference or putting on pants and FEELING a difference can be very motivating. Another concern for me was any action I took to help her correct the behavior could cause problems with body image permanently. My mother has struggled with that her whole life, and I don't want to create that in my daughter. I have had a weight issue since my early twenties, but I am still pretty confident.
So, anyway, when all of these things are swirling in my head I read. I used to borrow books at the library or buy books at the bookstore, but now I read studies and forums online. :) Well, I found a lot of information. Turns out 30% of narcoleptics are obese. Studies done to determine the cause of the obesity can not find a link to medication nor caloric intake. It appears their endocrine system is affected. Hormones. Lovely. She's already struggling with the most hormonal time in your life.
"I am 30 years old and have suffered from Narcolepsy since I was about 11 or 12 years old. At the same time I started having symptoms of Narcolepsy(which I did not know about until 1997), I also started having the problem of waking up and eating in the middle of the night. I have tried everything to not eat, but I just get so hungry I can't sleep unless I eat. I have recently been researching The Noncturnal Eating Syndrome. Does anyone with Narcolepsy suffer from the same problem oris it just me, and if so what have you done to treat this problem. "
Then, I found a name for what she's expereincing. Why is it that a label can make you feel not so alone and less freaky? NES: Nighttime Eating Disorder. Lightbulbs starting flashing around me. It is newly researched, but appears to be a type of compulsion similar to binge eating. It is hormonal. Different brain chemistry has been measured in connection with it, and, you guess it: commonly linked with Narcolepsy.
"The majority of patients with narcolepsy experience a number of symptoms of eating disorders, with an irresistible craving for food and binge eating as the most prominent features. Eating disorder symptomatology interfered with daily activities. These findings justify more attention for eating disorders in the treatment of patients with narcolepsy."
So, what to do? Still working on that. But knowing it's really not a choice, but more of a compulsion gives me direction to work with. I myself was diagnosed with depression and OCD, so I'm familiar with obsessions and compulsions and the high you feel when you eat to ease depression. I can teach her to use the same techniques I use when I am stressed and feel compulsions. It will be tricky though, because I'm asleep when she's suffering.
-Raising a Narcoleptic
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