Did you know that today is National Purple Day? Do you know
what this means? It’s Epilepsy Awareness Day!
what this means? It’s Epilepsy Awareness Day!
After almost a year of being back in the blogging world I think
I’m ready to tell all of you a little secret I’ve been keeping from you.
I have Juvenile Myoclonic Epilepsy. To those who don’t know what this is
it’s just a fancy way of saying I have seizures also referred to as episodes (I
guess seizures sounds scary to some people) and it starts to develop in your
early years of puberty. So with that being said I’d like to share my
story with all of you.
I’m ready to tell all of you a little secret I’ve been keeping from you.
I have Juvenile Myoclonic Epilepsy. To those who don’t know what this is
it’s just a fancy way of saying I have seizures also referred to as episodes (I
guess seizures sounds scary to some people) and it starts to develop in your
early years of puberty. So with that being said I’d like to share my
story with all of you.
It was spring of 2005 and I was getting ready for my senior white
water rafting trip. All I remember is attempting to put my earrings in
and having some trouble because I just couldn’t focus for some reason and my
arm was twitching. The next thing I know I’m waking up in my bed in the
afternoon. I immediately freaked out because I had no recollection of
what happened early that morning so I thought I just went back to sleep after I
put my earrings in. I felt weird. I felt tired. I felt like
my whole body was aching. I noticed that I had bit my tongue somehow and
so I decided that my frail feeling body will go downstairs and ask my mom what
happened.
water rafting trip. All I remember is attempting to put my earrings in
and having some trouble because I just couldn’t focus for some reason and my
arm was twitching. The next thing I know I’m waking up in my bed in the
afternoon. I immediately freaked out because I had no recollection of
what happened early that morning so I thought I just went back to sleep after I
put my earrings in. I felt weird. I felt tired. I felt like
my whole body was aching. I noticed that I had bit my tongue somehow and
so I decided that my frail feeling body will go downstairs and ask my mom what
happened.
She said that her and my dad had to carry me to bed because they
heard a big thud and found me on the bathroom floor. At first we thought
it was probably that I was sleep deprived because I was a senior in high school
getting ready for graduation and prom and life was just hectic. We
ignored this first episode.
heard a big thud and found me on the bathroom floor. At first we thought
it was probably that I was sleep deprived because I was a senior in high school
getting ready for graduation and prom and life was just hectic. We
ignored this first episode.
Life went on, I went to prom and I graduated. It wasn’t
until the day after project graduation that I had another incident. Only
this time it was different. I was on the phone with my friend and I was
so tired but I needed someone to talk to because my boyfriend had just broken
up with me (oh what a jerk! keep in mind this is high school). I’m on the phone and next thing I know my
whole body started twitching and again I woke up to my brother freaking out
trying to get me into bed. There was a decent amount of blood because I bit on my
tongue and lip extremely hard. My whole body was aching even more than
before. My friend said she heard some noises on the phone (this is when
cell phones first came out by the way) and so she called my house phone to see
if anyone could check on me.
until the day after project graduation that I had another incident. Only
this time it was different. I was on the phone with my friend and I was
so tired but I needed someone to talk to because my boyfriend had just broken
up with me (oh what a jerk! keep in mind this is high school). I’m on the phone and next thing I know my
whole body started twitching and again I woke up to my brother freaking out
trying to get me into bed. There was a decent amount of blood because I bit on my
tongue and lip extremely hard. My whole body was aching even more than
before. My friend said she heard some noises on the phone (this is when
cell phones first came out by the way) and so she called my house phone to see
if anyone could check on me.
My parents immediately came home.
After I slept for pretty much the whole day, I woke up to clean
myself up and see what the damage was this time. I had a huge hole in my
mouth because I bit down really hard, I was missing some taste buds (yes it’s
totally possible) my lip was starting to get fat, my whole forearm was black
and blue, and I had a black eye. Apparently when I had my seizure my face
ended up hitting my bed post.
myself up and see what the damage was this time. I had a huge hole in my
mouth because I bit down really hard, I was missing some taste buds (yes it’s
totally possible) my lip was starting to get fat, my whole forearm was black
and blue, and I had a black eye. Apparently when I had my seizure my face
ended up hitting my bed post.
At this point my parents were worried. We started going to
doctors and once my regular doctor referred me to a neurologist we started to
freak out. Why a neurologist? What the heck is wrong with me?
I have a brain problem? How could this be? We decided we wouldn’t
worry until we got all of my testing done and my diagnosis. After having
a bunch of tests done, having wires stuck to me reading anything in my brain
and heart we finally had a diagnosis. The neurologist said “you have
Juvenile Myoclonic Epilepsy.” Life was never the same after that day.
doctors and once my regular doctor referred me to a neurologist we started to
freak out. Why a neurologist? What the heck is wrong with me?
I have a brain problem? How could this be? We decided we wouldn’t
worry until we got all of my testing done and my diagnosis. After having
a bunch of tests done, having wires stuck to me reading anything in my brain
and heart we finally had a diagnosis. The neurologist said “you have
Juvenile Myoclonic Epilepsy.” Life was never the same after that day.
After this I was put into a hospital for 48 hour monitoring where
I couldn’t sleep the whole time. The doctor’s were trying to force me to
have a seizure so they can see exactly what kind of readings they get. It
wasn’t until I came home that morning and I could finally sleep that I had a
seizure right in front of my mom. I tried controlling it which was the
biggest mistake ever. It made my body hurt even more, and it made me more
tired than ever before.
I couldn’t sleep the whole time. The doctor’s were trying to force me to
have a seizure so they can see exactly what kind of readings they get. It
wasn’t until I came home that morning and I could finally sleep that I had a
seizure right in front of my mom. I tried controlling it which was the
biggest mistake ever. It made my body hurt even more, and it made me more
tired than ever before.
I couldn’t go away to college. For the first semester I had
to be driven to school because my license had been taken away until we knew the
medication was working. Here I was, 18 not being able to drive myself to
school and I couldn’t even go away to school. Why me? Why now?
to be driven to school because my license had been taken away until we knew the
medication was working. Here I was, 18 not being able to drive myself to
school and I couldn’t even go away to school. Why me? Why now?
The day I was able to drive my little VW Jetta Manual TDI was a
glorious one. I drove that car aimlessly for about 4 hours before I came back
home. After that life started to go back to normal. I kept thinking
and worrying that life would never be the same and that I would end up having
to change everything but really, I didn’t. The only difference was I had
to be more careful and make sure I took my medication and had enough
sleep.
glorious one. I drove that car aimlessly for about 4 hours before I came back
home. After that life started to go back to normal. I kept thinking
and worrying that life would never be the same and that I would end up having
to change everything but really, I didn’t. The only difference was I had
to be more careful and make sure I took my medication and had enough
sleep.
Four years went by with no episodes and everything was as normal
as it could be. Then there was a day in February when I had my first
seizure in almost four years. The pharmacy switched my medication from
brand name to generic without consulting me or my doctor. That morning in
February of 2009 I had a seizure in the bathroom and ended up falling into the
closet which I ended up breaking.
as it could be. Then there was a day in February when I had my first
seizure in almost four years. The pharmacy switched my medication from
brand name to generic without consulting me or my doctor. That morning in
February of 2009 I had a seizure in the bathroom and ended up falling into the
closet which I ended up breaking.
I went through all of my crazy testing again to see if I needed to
change anything with my medication (besides switching back to brand name) and
everything seemed to be ok. It has been five years since that seizure and
I am living life seizure free. I graduated with my Bachelor’s in Business
Administration and went on to also earn my MBA degree. I currently hold a
full time office job in corporate America along with this blog, my Mason Jar
business, AND Mary Kay. I can’t even begin to describe how hard it has
been after being diagnosed with something like that. I do want to say
that I am as normal as can be. Everything happens for a reason, and I
think I was diagnosed for a reason. To be able to show people that you
can’t underestimate yourself, you are capable of more than you know.
change anything with my medication (besides switching back to brand name) and
everything seemed to be ok. It has been five years since that seizure and
I am living life seizure free. I graduated with my Bachelor’s in Business
Administration and went on to also earn my MBA degree. I currently hold a
full time office job in corporate America along with this blog, my Mason Jar
business, AND Mary Kay. I can’t even begin to describe how hard it has
been after being diagnosed with something like that. I do want to say
that I am as normal as can be. Everything happens for a reason, and I
think I was diagnosed for a reason. To be able to show people that you
can’t underestimate yourself, you are capable of more than you know.
I hope one thing people take from this is to follow your dreams no
matter what obstacles you face. I couldn’t
go away to school and the first semester my dad told me that if I wanted to
take off and recoup after a whole summer spent in and out of hospitals and
doctor’s offices that I could. He also
asked if I wanted to see a psychiatrist just in case I needed to talk to
someone if I couldn’t talk to my parents.
I told him no. I want to live a
normal life. Yes, it was extremely
tough, and yes I wish this didn’t happen to me but I wanted to be as normal as
I could. Even if I couldn’t go out and
stay up until 7 in the morning and not sleep in college that was ok. This actually helped me focus more on school
and getting to my dreams.
matter what obstacles you face. I couldn’t
go away to school and the first semester my dad told me that if I wanted to
take off and recoup after a whole summer spent in and out of hospitals and
doctor’s offices that I could. He also
asked if I wanted to see a psychiatrist just in case I needed to talk to
someone if I couldn’t talk to my parents.
I told him no. I want to live a
normal life. Yes, it was extremely
tough, and yes I wish this didn’t happen to me but I wanted to be as normal as
I could. Even if I couldn’t go out and
stay up until 7 in the morning and not sleep in college that was ok. This actually helped me focus more on school
and getting to my dreams.
If you would’ve asked me back then if my life now would’ve been
possible I probably would’ve said no.
When I was first diagnosed I thought my life was over. Now I look back and think that if I would’ve
had someone motivating me and showing me your life is NOT over I probably would’ve
coped better. I want to motivate at
least someone, if not today maybe years down the road. Think of the biggest dream you have. You can get there if you push yourself and
motivate yourself. They always say if
you have a positive attitude, positive things will come your way.
possible I probably would’ve said no.
When I was first diagnosed I thought my life was over. Now I look back and think that if I would’ve
had someone motivating me and showing me your life is NOT over I probably would’ve
coped better. I want to motivate at
least someone, if not today maybe years down the road. Think of the biggest dream you have. You can get there if you push yourself and
motivate yourself. They always say if
you have a positive attitude, positive things will come your way.
Ralph Waldo Emerson once said, “it is not the length of life, but
depth of life.” Just remember that when
you carry on with your day today.
depth of life.” Just remember that when
you carry on with your day today.
Happy National Purple Day.
To all of my fellow epileptics and families of epileptics, you’re not
alone. Maybe one day you’ll see me at a
motivational speaking seminar with the Epilepsy Foundation (one of my goals)!
To all of my fellow epileptics and families of epileptics, you’re not
alone. Maybe one day you’ll see me at a
motivational speaking seminar with the Epilepsy Foundation (one of my goals)!
Hi! I commented in IC, but obviously have to comment here haha. It truly is an amazing story and I'm so happy that you can live your life seizure free. I've no doubts that you will motivate people and inspire people to keep on going and aiming for what they want in life. It's a different mind-set and you can be an example for many! 🙂
Perfect saying: “it is not the length of life, but depth of life.” ^_^
*waves*
Thank you so much!!!! I just hope that one day I can tell my story and maybe give hope to some people out there who were like me and kept repeating my life is over.
Your story reminded me on one of my first years teaching. One of my students, a six-year-old girl, had epilepsy. I remember her mom asking to meet me over the summer so she could explain her daughter's medical condition. She was a nervous wreck and as a second year teacher, so was I. The little girl was an absolute sweetheart. I educated myself and dove in. She would have two seizures during the school year and was afraid to come back after the first one. I made a point of instructing the class not to treat her any differently when she returned. Thankfully, they followed my lead and didn't; business as usual. At the end of the day, she gave me a big hug and was back the next. I often wonder how she turned out.
That's so great of you to be so understanding of her. It's a scary thing for the epileptic and their family/friends. Whenever someone finds out I have epilepsy the first thing they ask is are you going to have a seizure right now and what do I do when that happens? I've gotten used to being epileptic but I know it's scary for most people. When you go through that process of getting the diagnosis that's the worst. There's so many tests involved. I'm extremely thankful that I had my parents and brother by my side through all of it though. I can't imagine going through that alone.
So happy to see you living the life you want and finding meds and a routine of sleep and stress free-ness that works for you. A good friend of mine, and ex-boyfriend (? kinda sorta haha) lives with epilepsy as well. It's one thing to know somebody you love has it, another to see them have a seizure, visit in the hospital, etc. It's even worse when he wrecks a car on 76 going 80 miles an hour cause he has one. It's a scary thing but a normal, happy, productive life is totally possible. Keep kicking ass, girlie!
Thank you so much Julie! And oh my gosh!!!!! That's horrible!!!! I hope he is ok!! That's why I couldn't drive for a while because they wanted to make sure my medication worked. I can tell when I am about to have one so at least I have a warning so if I'm driving I can pull over, but thankfully I've never had to do that. Wow, that is extremely scary.