Sunday, March 31, 2013

Well known people with Epilepsy

First and foremost, for anyone celebrating Easter, I hope you had a great Easter today!

Now I've still been thinking about something one of my readers posted about how Julius Caesar had epilepsy.  Well I decided to do some research and this post will be about some more great people in history who had epilepsy.  The list I have isn't including everyone I found some research on.  Although, I think it's a good start for those of you who are having a hard time with being diagnosed or with coping with your diagnosis.  I hope this helps some of you out there.  Just as an inspiration that all of us can be great even if we are a little different.

All of the following information I have taken off:  http://www.disabled-world.com/artman/publish/epilepsy-famous.shtml

Hugo Weavin
Born April 4, 1960.
Actor, was diagnosed when he was 13 years old.  Due to the prospect of seizures, Weaving does not drive cars. He has never married and lives with his partner Katrina Greenwood.

  
Vincent van Gogh
1853 - 1890.
Vincent Van Gogh an artist.  "Being the loving and creative man that he was his epilepsy had once caused him to run after his friends with an open razor, he ended up cutting his own ear lobe off. He eventually shot himself "For the good of all" leaving behind all the colorful paintings he had made" (www.disabled-world.com)

  
Sir Isaac Newton
4 January 1643 - 31 March 1727
A scientist responsible for founding the three laws of motion along with some studies of Universal Gravitation. "Was thought by many a product of psychosis but he may just have been in his right mind." (www.disabled-world.com)

  
Neil Young
Born, November 12, 1945.
"A musician known for his meaningful lyrics and also a spokesman for environmental issues, Neil Young has been labeled one of the greatest guitarists of his time. When he was young his parents divorced and Neil was confronted with many diseases simultaneously. The obstacles in which he faced included Epilepsy, Polio and Diabetes which he did eventually all overcome. Since then he has been a peacekeeper through music and is ever present in the fight for justice and all that has to do with a more peaceful world' (www.disabled-world.com)

  
Napoleon Bonaparte
15 August 1769-5 May 182
"An Italian General with many victories, also later becoming 1st consul of France. He played a great role in many wars and was a shining sword of honor for all of the French. Since his youth Napoleon had always given all his efforts to rise in military grades until he finally became emperor seated on his imperial throne. Many books today claim that Napoleon Bonaparte might have suffered from epilepsy throughout his lifetime. Although many have stood up to say that there is no valid proof and that it is but a myth"(www.disabled-world.com)

  
Agatha Christie - Dame Agatha Mary Clarissa, Lady Mallowan, DBE
15 September 1890 - 12 January 1976 "commonly known as Agatha Christie, was an English crime fiction writer. She also wrote romance novels under the name Mary Westmacott, but is best remembered for her 80 detective novels and her successful West End theatre plays. Agatha Christie is world famous for her brilliantly crafted mysteries. During the 1920s and 1930s, she created the enduring detectives Hercule Poirot and Miss Marple. The details of Christie's personal life, however, have rarely been documented" (www.disabled-world.com)

  
Charles Dickens - Charles John Huffam Dickens, FRSA (17 February 1812 - 9 June 1870), pen-name "Boz", was the foremost English novelist of the Victorian era, as well as a vigorous social campaigner. The Victorian author of such classic books as A Christmas Carol and Oliver Twist had epilepsy, as did several of the characters in his books. The medical accuracy of Dickens's descriptions of epilepsy has amazed the doctors who read him today. Through some characters in his novels, Charles Dickens recorded observations on the nature of epileptic seizures, their causes and provocation, and their consequences. Three of his main characters, Monks, Guster, and Bradley Headstone, had seizures which Dickens realistically described.

  
Alexander the Great - Alexander the Great (July 20, 356 BC - June 10, 323 BC), also known as Alexander III, was an ancient Greek king (basileus) of Macedon (336-323 BC). Alexander died after twelve years of constant military campaigning, possibly as a result of malaria, poisoning, typhoid fever, viral encephalitis or the consequences of alcoholism. Born in Pella, capital of Macedon, Alexander was the son of King Philip II of Macedon and of his fourth wife Olympias, an Epirote princess. Alexander the Great had epilepsy, however at during his time epilepsy was known as "the sacred disease" because of the belief that those who had seizures were possessed by evil spirits or touched by the gods and should be treated by invoking mystical powers.

  
Danny Glover - (Born July 22, 1947) A great actor in both Lethal Weapon with Mel Gibson and Predator 2. Danny Glover suffered dyslexia at school when he was younger and the school staff would label him retarded. Danny Glover also had epilepsy and at an appearance on the Rosie O'Donnell Show told how he had developed epilepsy at the age of 15, and in one cross-country trip with his family had experienced six seizures in a row.

  
Alfred Nobel - Alfred Bernhard Nobel (October 21, 1833, Stockholm, Sweden - December 10, 1896, Sanremo, Italy) was a Swedish chemist, engineer, innovator, armaments manufacturer and the inventor of dynamite. By the time of his death he held more than 350 patents and controlled factories and laboratories in 20 countries. William Gordon Lennox wrote that "Nobel was subject to migraines and convulsions from infancy." Nobel had epileptic seizures as a young child, which later made him write of convulsions and agony in a poem. The foundations of the Nobel Prize were laid in 1895 when Alfred Nobel wrote his last will, leaving much of his wealth for its establishment. Since 1901, the prize has honored men and women for outstanding achievements in physics, chemistry, medicine, literature, and for work in peace.

  
Michelangelo - (March 6, 1475 - February 18, 1564) The sculptor of many of the most renowned sculptures of all times. Michaelangelo was a respected renaissance man only rivaled by Leonardo Da Vinci. Striving to excel in numerous disciplines he is also responsible for the paintings inside many famous cathedrals and the construction of some of the most respected buildings. Projects such as St.Peters basilica, basilica of San Lorenzo and the Medici Chapel which will forever leave Michaelangelo and his works a legend in all history.

  
Leonardo Da Vinci - (April 15, 1452 - May 2, 1519) The man responsible for some of the greatest religious paintings in history Leonardo Da Vinci excelled not only in painting but in numerous other disciplines as well. He was a Tuscan polymath: architect, botanist, musician, scientist, mathematician, engineer, inventor, anatomist, painter, sculptor, and writer. His most famous work is definetely the paintings of both Mona Lisa and the Last Supper of Jesus Christ which have both been the most reproduced religious paintings of all times.

  
Julius Caesar - (July 13, 100 BC - March 15, 44 BC), One of the most influential men in world history, Caesar participated in the army with distinction constantly excelling in leadership skills. He had a ruthless personality and thought of himself as far superior. A perfect example of this is when Julius had gotten captured by pirates, the pirates demanded a ransom of twenty talents of gold. Julius then laughed and demanded that they ask for fifty, he then promised them that he would chase them down once freed. Which he did, raising a fleet to chase the pirates and capture them. He then crucified them under his law once he had caught up to them.

  
Edgar Allen Poe - (January 19, 1809 - October 7, 1849) Edgar Allen Poe is a member of the Romantic Movement, mostly as an author and literacy critic. He has written books and short stories and he is best known for his macabre and mysteries, he is the one who invented the Detective-Fiction genre. For many years people have referred his mental problems to alcohol and drug abuse but, today many believe that he was not well diagnosed. Many now believe he may have been epileptic which would sometimes explain his frequent confusion.

  
Aristotle - (384 BC - 322 BC) Aristotle was a Greek philosopher writing on many different subjects including zoology, biology, ethics, government, politics, physics, metaphysics, music, poetry and theater. He was also a great teacher for Alexander the Great. Aristotle was one of the first to point out that epilepsy and genius were often closely connected. He found that the seizure disorders may have the ability to increase brain activity in specific places and maybe also enhance a persons natural abilities to a certain extent.

Theodore Roosevelt - 26th President of the U.S. (October 27, 1858 - January 6, 1919) Roosevelt was a soldier , historian, explorer, naturalist, author, and Governor of New York later becoming the President of the United States at the age of 42 years old. He was well known for having a vast range of objectives and achievements, all with an energetic determination and a hard ''cowboy'' persona. He was subject to epileptic seizures, his eyesight was bad, and he also suffered from asthma, but was still a man of courage and strength appreciated by many.

  
Alfred the Great - (c. 849 - 26 October 899) Alfred the Great was king of the Anglo-Saxon kingdom of Wessex from 871 to 899. In his life Alfred highly valued education and wanted his kingdom to be rich with knowledge. He improved his Kingdom's law as well as it's military structure. Although Alfred had epilepsy it did not keep him from doing good for his kingdom and making one of the best books of laws of his time. He was very catholic and by the time of his death he had helped increase the quality and amount of churches and schools from all over his lands.

  
 Bud Abbott - (October 2, 1895 - April 24, 1974) Bud Abott was an American producer, comedian and actor. Many times did he try to hide the fact that he was suffering from epilepsy. His whole life he had been subject to the disease and many times he tried to control it with alcohol. His alcoholism was getting worst as time went by and he eventually went bankrupt due to tax issues with the IRS. Short after going bankrupt Bud lost his longtime partner Lou Costello when he died from heart damage. Bud then tried to take another shot at his career with Candy Candido but was not successful. Bud Abott died of cancer on April 24, 1974 after suffering from two consecutive strokes.

  
Lewis Carrol - (27 January 1832 - 14 January 1898) was an English author, photographer, mathematician, Anglican clergyman and logician. He has written several renowned books and his work has inspired many modern artists. His facility in wordplay would attract not only children but also some of the elite readers. He has written books describing minor epilepsy attacks and the dream worlds that some of them may bring a person to. Like the sensation of falling in a hole and everything around getting smaller or bigger. Not hearing or seeing the same and feeling as if your entire body is changing in a fraction of a second.

  
 Richard Burton - (November 10, 1925 - August 5, 1984) Being at one time the highest paid Hollywood actor, Richard was well known for his distinctive voice. He was crippled all his life by epilepsy and was extremely deep into alcoholism to try and prevent the seizures. Eventually this led him to manic depression but he would never go to see a doctor because he did not trust them one bit. At times he seemed to be more scared of being crazy then having epilepsy. Throughout his entire life he had never went to get diagnosed by a doctor.

  
George Frederick Handel - (Friday 23 February 1685 - Saturday 14 April 1759) was a German-born Baroque composer who is famous for his operas, oratorios and concerti grossi. Since the 1960s, with the revival of interest in baroque music, original instrument playing styles, and the prevalence of countertenors who could more accurately replicate castrato roles, interest has revived in Handel's Italian operas, and many have been recorded and performed onstage.

Thursday, March 28, 2013

I have a question for anyone reading this...

So I have officially made it home from Texas.  I wanted to wish everyone a belated Global Purple Day, who wore purple on Tuesday?  I sure did.
While I was in Texas I ran into a little problem with my epilepsy.  Lack of sleep.  I didn’t want to be rude and ask to be taken back to the hotel by my co-workers because we were at dinner but I know my health comes first.  In this type of situation I don’t really have any true advice for anyone just because every situation is different.  I also knew that I had to wake up at 4:30 a.m. for the flight.  This is when I got concerned.
In my case I was lucky enough to somehow get out of sitting for another few hours at dinner and was driven home.  I just said how I wasn’t feeling well and was extremely tired.  When traveling, especially with business it can be exhausting. 
I always tell myself my health comes first.  I wanted to reach out and ask if there are any readers that actually travel for business with epilepsy.  What do you do?  How do you go about telling your boss, “hey can you give me a ride back because I don’t feel good?”  I just want to know if anyone else has any input because I wasn’t 100% sure how to react in this situation.  Or even any readers who have any suggestions, that would be helpful.

Sunday, March 24, 2013

Lonestar State, HERE I COME!

Well everyone, the day has come when I can finally go back to Texas!  I know this doesn't really have too much to do with my epilepsy besides the fact that I'm not letting it hold me back.

Here is a background on Texas, and why it's important to me.

A long time ago for some reason I really wanted to go to Texas.  Something kept telling me that I HAVE to go to Texas.  Well at the time I was engaged and I kept asking my fiance if he could transfer down to Texas with work.  We were extremely young and needless to say the engagement was broken off.  I picked myself up after the break up and decided I'm going to Texas.  I tried looking for jobs in Texas for the longest time.  Then I met some people who were from Texas and I got to know them.  We become really close friends and after about a year of knowing them and two years after the break up I bought a ticket to Texas.  I stayed with my friends while I found a job.  After only a week I found a job, it wasn't the greatest, but it was my ticket there.

I came back home for a week, packed up my stuff, and moved down to Texas.  Unfortunately life happened and a lot of things happened that caused me to question if I should come back home.  I talked to my parents and we felt it was best that I come home, also my parents felt more comfortable if I was closer to home or if i wasn't living alone as a just in case with my epilepsy.

I came home, things calmed down, and I started my hunt for THE job, not just A job.  I finally found my dream job after a few months of being back home.  Now, they are sending me to Texas on business.  I think it's amazing that I've come such a long way, and Texas is still following me.  There's something about that Texas, I "reckon."

I know everything happens for a reason.  This is one of those things that happens for a reason.  Just like my epilepsy.  I wonder what my life would have been like without the epilepsy?  Would I have partied in college like most kids?  Would I have ended up at a different college?  Would I have went away or commuted?  Would I be where I am today?  Would I be as happy as I am?

I have a feeling that I was given epilepsy for a reason.  It happened so I would have focused on different things in life, or just in general.  Maybe it was so I could talk to a computer and hope some people can read and maybe relate or feel better.  Either way it wasn't just because.  I know for a lot of people it may feel like that in the beginning, but each of us has our own story.  Some stories are more intense than others, but we are all here to help each other cope.  With that being said I can't say it enough that if anyone ever needs someone just to hear them out, I'm all ears. 

Friday, March 22, 2013

Finding out about the cyst on my brain and being monitored for 48 hours.

While I was in the process of getting diagnosed like I’ve mentioned in previous posts I had to get MRI’s, blood work, and EEG’s done.  After we received the results for the MRI the doctor noticed I had a cyst on my brain.  He stated that it looks like an innocent cyst that I might have just been born with and that unless it grows in 6 months when I was scheduled for my next MRI it wasn’t a tumor.  Well, not only was it bad enough that I was going to be diagnosed with something life changing now I might have a tumor?! 

The next step was to get an EEG and figure out what was causing all of these problems.  The doctor said that since I had already had an EEG at our local hospital he wanted to step it up a notch and do a monitored EEG not just the hour long one.  It was an EEG that monitors you for 48 hours inside of a hospital and on top of staying at an uncomfortable hospital, I couldn’t sleep.  The reason why I couldn’t sleep is because they wanted to force my body to go into a seizure and see what the spikes were like on the recordings after that.

I was admitted into a hospital into the neurological wing where all they do there is testing on people like me.  I was actually the oldest.  The rest were younger and some were little children.  I saw that and almost cried because at least I was able to live my life freely up until 17 years and they wouldn’t have that chance.  That’s when it hit me that my condition whatever it may be isn’t just a game, it’s something that WILL change my life.

I was hooked up to the EEG and it was one that I’ve never seen before.  It was this huge machine that is hooked up to all of the wires and if you got up to walk around you had to push it around almost like an IV when you go to the hospital or what you see in the movies.  It was so completely obnoxious and annoying.  Although the good thing was since the wires that were hooked up to my head were so long if I had to go to the bathroom in my room I didn’t have to drag that around with me.  It’s actually kind of funny because when my friends came to visit me they were looking for me while I was in the bathroom and they found me because all of the wires were hanging out of the door.


While I was in the hospital my dad had taken those days off of work because whenever I go to the hospital he is ALWAYS there, even when I was hospitalized with pneumonia and an asthma attack when I was 8.  He stayed up the whole time except for when my mom came for the day he would nap in the chair, the nurses actually gave us extra blankets for him.  We watched movies the whole time, my mom bought me literally every favorite food or candy I liked to keep my spirits up.  I still regret up to this day not going to the other patients on that floor and talking to them.  They must have been so scared to be that little and be going through something like this, it is so unfair for children to go through this.  They are too young to understand what exactly is happening.  How do you explain to a child that they can never do something again because of their condition?
Well the doctors tried to trigger a seizure by keeping me awake and by doing the strobe light test and absolutely nothing worked.  I thought maybe it was a miracle, maybe I only had those two seizures and that was it, I’m not epileptic.


Once we got home from the hospital my parents were being cautious and were trying to help me get into bed safely.  Good that my mom ended up staying because as soon as she was about to get me another blanket I started to seizure, only this time I tried to control it so I wouldn’t have one.  From my experience I feel like this is the worst thing I could’ve done.  I remember my mom screaming for my dad and then she tried to hold me but I felt my whole body tense up and it was so painful but I was trying to not have it and then I don’t remember anything after that.
 
My parents called the hospital and told them what had happened, they said it’s not uncommon they have had plenty of phone calls like this.  They said that they will get my results as soon as they can to the doctor. 
The doctor called us once the results were ready and he said that there were spikes in my EEG even though I didn’t have a seizure.  Pretty much my brain is abnormal and is constantly spiking.  That’s when he gave me the diagnosis.


Once we went to the other doctor in NY he looked over all of my results.  He went back to the MRI and said that I didn’t have a cyst.  It looks like it is part of my brain tissue hooked onto my skull.  He told me that most likely what happened was when I was born the doctors squeezed my unformed head a little too hard (my mom had terrible complications with my premature self during labor) and that’s what that was.  He said it’s nothing to worry about but that I should get MRI’s at least annually to make sure nothing has changed with it.  He went over my EEG’s and said the same thing, that I was having spikes even without the seizure and it was occurring in my frontal lobe.  He confirmed the diagnosis and then he proceeded with what causes it, what I should stay away from, and what I can do.

I can’t:
·         Go on roller coasters
·         Drink
·         Be sleep deprived
·         Be stressed out to the max
·         Skip my medication
·         Take baths
·         Be unsupervised
·         Do kickboxing anymore, until the medicine shows it’s working
·         Work around sharp objects until the medicine works
·         Drive
That’s just the small list.  Pretty much in the beginning I didn’t do anything except stay at home supervised all the time or if I went anywhere, my friends had to know my parents phone numbers and vice versa.  Once the medicine actually showed that it worked and this was the medication for me I had a little more freedom.  I could now be unsupervised for certain things, I could go back to kickboxing, and after some time I could drive.  When I got my license back that was the one of the happiest moments of my life.


Has anyone else been monitored like this? What else can't other people do?

Thursday, March 21, 2013

Just some supportive images.

I wanted to upload some supportive images since I've been writing a lot.  By the way check out my post from earlier today, I feel as though it is an important one.






Does anyone have any stories to share today?

Surrounding myself with positive energy.

Last night I received my first comment!  It makes me so happy that I can reach out to people.  I love feedback and I am always up to listen to someone else’s story.  I feel like it makes it a little easier to know there are many of us.  Actually my reader told me that Julius Caesar was epileptic, it is a random fact that I didn’t know and I think that’s awesome.

I decided that for this post since I was so happy to receive feedback I’m going to talk positivity being key in my life.

With most things in my life I cope with humor or anger.  Mostly humor though because it’s a better energy, plus with my epilepsy I can’t be stressed and I can make jokes and laugh.  I know that at the end of the day everyone copes differently and it’s just human nature.

When I was first diagnosed I was going through a different emotion every five minutes and pretty much crazy mood swings.  At first I was in shock and honestly froze and when the doctor gave me my diagnosis it was as if everything was tuned out except for my own thoughts, kind of like in Charlie Brown where the teacher talks but you can’t actually understand a thing she’s saying.  The next emotion was anger.  “Why me?”  “Why now?”  “Will I be able to go to college?”  “I’m not normal anymore.”  “What happens when I turn 21?”  “I can’t drink on my own 21st birthday like normal people.”  “Will I be able to drive?”  “Will I be on medication?”  “Will I have to be supervised for everything I do?”  Those were just a few questions running through my head.  First of all for those of you around drinking age, whether it’s in another country or here in the US, there is life without drinking!  I don’t and it’s actually fine with me because I know it’s just a temporary feeling people get.  I can’t stress the drinking part enough because I know sometimes it’s the cool thing to do but it’s not worth possibly having an episode for or being rushed to the hospital.

After being angry at the world and at life, even myself I realized why am I angry?  I should be sad if anything because I will never be the same as I was before.  The sad emotion was the worst for me.  I cried A LOT.  I learned it’s ok to cry, you need to let it all out somehow.  The only thing is I took it a little too far where I literally just didn’t care anymore, I wasn’t suicidal although I can see how someone can become that way but I just didn’t think anything was worth it anymore.  My friends tried to get me to hang out and I just didn’t want to. 

With all of these emotions going on I eventually went into shut down mode where I fought with my parents all the time, I would leave the house and lie to them on where I was going (which I look back on now, and yes it was EXTREMELY irresponsible), and hanging out with people that I shouldn’t have been because they were so negative about everything in life.
This is where I realized something.  WHY AM I SURROUNDING MYSELF WITH NEGATIVE ENERGY???  I knew that my life had to be turned around somehow.  I couldn’t keep doing this to myself or my family and even my little brother, I’m pretty sure I scared him and I am his big sister.  I can’t imagine how it feels like to see not only your parents falling apart, but your big sister crumbling into pieces, the one you confide in and talk to and knows won’t judge the way friends do or won’t yell at you the way parents do. 

Since I saw that I was being selfish, I was hurting all of the people who cared about me and loved me more than anyone ever will.  I decided to start doing things that increased the positivity in my life.  Things that made me happy.  I started to take yoga classes in college which put me in a place where I could have “me” time.  It was my hour break from life and everything around me.  Then I started to talk to my parents more about the thoughts that were going through my head and how I was beating myself up over all of this.  I started to hang out with friends that made me happy.  I studied harder to prove to myself that I can be a good student even with all of this going on with my life.  I started dressing nicer and taking care of how I look and just feeling pretty.  I went to the movies instead of sitting in someone’s basement complaining about how my parents don’t understand and watching my friends drink while I just sat there being the “loser sober” one. 

You have to surround yourself with positive things.  It helps the coping process that much more.  You also need to understand that you’re not the only one going through this, the people around you are as well.  My mom told me that her and my dad felt helpless and as if they were failures because there was nothing they could do to stop this.  My mom still to this day tells me she wishes she could take my epilepsy away even if it means she would have to take it and have it herself.  My dad is the neutral one; the one of very few words.  He is constantly (8 years later) doing research on my condition and medications.  He never showed any emotion because he had to be the strong one for everyone even though whenever we talk about what happened 8 years ago you can see the hurt in his eyes that he couldn’t do anything to make this go away.

Once I started thinking positively and telling myself I’m going to beat this and live a life that can be as normal as possible, I started to meet better people,  got into more activities, traveled, got my job, and most importantly I got my family back.  We are all pretty normal and my parents have come to terms with my epilepsy just as much as I have.  Don’t get me wrong if I drop something my mom immediately yells “Are you okay?”  She’s very cautious and observant, same with my dad.  If I’m taking a bath they’ll knock on the door if I’m in there for a while to see if I’m ok.  Even though to some people this will seem very annoying, tedious, or anything of that nature, it has become a way of life.  When something happens you learn to live with it and it’s like it becomes a second nature to you. 

Fill your life with happiness.  I know I’m not dying, I’m just living with sparks in my brain and medication. 

Carpe Diem my friends.

Wednesday, March 20, 2013

Pre-existing conditions and medication; what a topic.

Well I think the title of this post pretty much speaks for itself.  Today during my lunch at work I tried to accomplish finishing what I started yesterday.  It has to do with switching my health benefits from my dad's insurance to my own.  Although I know I will never be a normal healthy human being, sometimes I wish I could be, at least for a day.

While I was working on all of this I started to stress out a little bit about my medication situation.  In the past I have had so many issues and on top of it the pharmacy gave me a generic without consulting the doctor first and I had a seizure, so I ask myself will this happen again?

First step to all of this is honestly be extremely organized, I can't stress that enough.  Thankfully I've dealt with this a few times so I know the procedures. 

Secondly, I contacted my previous provider and asked for the pre-existing condition certificate to be sent as soon as possible.  I believe (but don't quote me on this), that by law in the USA, (since I know not all my readers are from the US) you have to have that certificate in order for your employer to be able to cover this condition, as much as their policy allows.

The third thing I did was contact the pharmacy/mail service.  Most of the time you'll get a discount if you order it through the mail just keep on top of it to get your medication in time.  I asked them if they require a certificate or letter stating that I can not take the generic only the brand name because I had to do this with the last provider.  This time around they told me no because on the prescription they can specify this request.  Then the doctor can send in the prescription and everything will be ok.  Well I made sure I wrote down every phone number, fax number, and system that the doctor can send this in to.

Then, the fourth thing I did was called my doctor.  Unfortunately this week he is not there so I will have to wait until next week for him to get all of this taken care of.  Thankfully as long as I have a valid prescription at the pharmacy I can pick it up there.  The unfortunate part is I'll have to pay $250.

Although $250 is not that bad compared to past experiences.  A few years back there had been some mix up with the insurance company and they didn't put in the file that I was still a student living at home and I found out that apparently I was not covered by my dad's insurance for a little while.  Well the way I found out was when I went to the pharmacy to pick up my medication and they told me it was going to cost the full price which at the time was $400.  For one bottle, that will last me a month.  Eventually everything got straightened out in time before I ran out of medicine.  Thank goodness that I actually call in my refill way before I run out, and don't wait until last minute. 

Pretty much the point of this post isn't to scare anyone.  I can't stress enough that being organized is key.  When it comes to my condition and medication and all that jazz I write everything down, even if I have to make a schedule to remind myself.  Also check your bottles when you get them and make sure it's your medication not the generic, that was my mistake a few years ago.

Does anyone out there have any suggestions, recommendations, or have any stories?

Since I'll be traveling next week wear purple on March 26th!!!

Tuesday, March 19, 2013

Was it a seizure or did I just pass out?

I wanted to share another story with all of you that are reading this.  By the way if anyone has a story or experience feel free to talk about it only if you're comfortable, I always like to meet and talk to people that are in a similar situation.  Well anyway, I wanted to talk about something that happened a little bit before New Years of this year. 

A few months ago before I landed my "big girl job" I had been working two jobs to pay off all of my student loans and other bills that you unfortunately  have as a grown up.  Since I graduated with my MBA I've been working very hard and of course stressing out A LOT.  Well for about three months I was working literally 7 days a week and 5 of those days I worked from 8:30 in the morning to about 9/10 at night.  For those of you who have epilepsy you understand how crucial it is to get enough hours of sleep and take care of yourself.  Well I pushed myself a little too hard and back in December I passed out, in the bathtub, with the water running.

Well as if it wasn't traumatizing enough for my parents because we all thought I had another seizure we had guests over our house.  When I moved to Texas (which is another post I will talk about because I was on my own) I decided to bring back a puggle who was a rescue and you can tell she has seen a lot in her lifetime.  She is like my shadow and she follows me everywhere EVEN into the bathroom when I take showers or baths.  She had started barking to get my parents attention to come upstairs.  My dad had to break down the door and both parents found me in the tub just laying there.  I remember a little bit of it I remember feeling like I was falling asleep.  Thankfully my parents decided to stick to the "dinky tub" with the special grips on the bottom instead of the jacuzzi they originally wanted because who knows what would have happened.  It was bad enough that the water was running with the tub clogged so I could have easily drowned.

We decided to call my doctor as a precaution because it didn't feel like a seizure, it felt as though I passed out but it could've been a change to my epilepsy or a reaction to my medication.  The doctor asked me to come in and asked to do blood work and a take home EEG.  He said that from the sounds of it, it didn't sound like I had a seizure it sounded like my body reacted the way a normal human being would when it is overly tired and I just fainted.  Whether this is exactly what it was no one will ever know because no one witnessed it and I didn't have an EEG to prove anything.  Well needless to say I was afraid that I was either going to have to increase my dosage or switch to another medication since it has been 8 years with the same dosage and medication. 

The EEG and blood work came back pretty normal.  The blood work showed that my levels of medication seemed low and that could raise a little concern that my body is almost becoming immune to the drug.  The EEG showed that the spikes in my brain were the same as they were a few years ago and that I still have the same diagnosis.  The doctor said again that from the sounds of it I fainted but he can't force me to increase my dosage because we don't have any proof saying this was a seizure so he said at this point it was up to me.  I could chose between staying at the same dosage and taking precautions like quitting my second job, not taking baths (at least if I'm not supervised), and taking better care of my health, OR I could increase my dosage or completely switch medications.  I chose the first option since I still live at home (yes I live at home at 25), someone is almost always home and I have my dog who watches my every move.  My dog actually stands over the bathtub and watches me now to make sure I'm awake.  It's a little strange but I know she will alert whoever is home that I'm not ok. 

Pretty much I learned that even after being seizure free since 2009, my condition is still there, I still have epilepsy, I still have to take medicine, and I'm not cured.  I have accepted the fact that I will most likely be on medication for the rest of my life and I have come to terms with this.  Every time something happens it may not be a seizure like this time, but it showed me that I have to take care of myself regardless.  I started sleeping more, eating better, and exercising to stay healthy.  I quit smoking not just to be more healthy but because it was my friends last wish from me when he passed away from cancer.  Everything in this life happens for a reason, people are put on this earth for a reason to impact your life.  I hope that I can reach out to at least one other person and help them get through it and cope with this condition or help a family or a parent.

If anyone ever has any questions or comments please don't hesitate to ask or speak up.

Monday, March 18, 2013

Do I have to hide my epilepsy?

Not everyone with epilepsy can hide it.  Some of us have grand mal seizures and if those are occurring often, it's hard to hide it.  Fortunately that is where I got lucky with my epilepsy.  I don't have grand mal seizures, my seizures are very quick and don't happen often.  If you were to see me on the street you would probably never guess that I have had multiple seizures and many twitches in my life. 

I know that we would all like to have epilepsy not be looked down upon but let's face it, it's not the first thing you are going to tell someone on a job interview.  People are still scared because when someone hears epilepsy they automatically think seizures.  They don't think about all the different types of seizures or different types of epilepsy.

 I chose to hide my epilepsy from most people.  If it's people I trust or people I am around a lot of course I will tell them just in case if I was to go into a seizure.  I tell them what to do and give them my parents phone numbers.  This sounds a little like middle school for me where my parents had to know where I was at all times.  It kind of still is like that just I'm older and I don't fight them about it or say they are over reacting.  I know my limit and I know how late I can stay up.  I know I can't be reckless.

Even though I chose to hide my epilepsy that doesn't mean I am ashamed of it or don't want to talk about it.  I just chose not to tell everyone.  I don't want to scare anyone especially if they first meet me because they haven't known me for long enough to see that I'm actually pretty normal I just have restrictions.

I know every one is different and some people have no problem talking about it and some people literally don't tell anyone but their family.  Writing all of this on the internet doesn't really hide it from people but at least I can tell my story one day at a time.

Sunday, March 17, 2013

Here is the start to my story...

I know I can start throwing out statistics and bore you with them but I'll just tell my story instead.  I'm a 25 year old girl living with Juvenile Myoclonic Epilepsy.  Pretty much this is a fancy way of saying I have a type of epilepsy that develops later on in teen years, well at least for most people, and some people can grow out of it, others can't.  I unfortunately was part of those who can't grow out of it.

I was diagnosed my senior year of high school back in 2005.  My first seizure (I sometimes refer to this as an episode for those of you who aren't familiar with epilepsy or seizure disorders) was the morning of my senior rafting trip.  I was so excited for it and all I remember is putting in my earrings and the next thing i was waking up in my bed a few hours later.  I had asked my mom what happened, or how I even showed up in my bed and she said i must have passed out from being overly tired.  Of course no one thought anything of it because anyone can pass out or faint from being tired and too much adrenaline from being excited.

My parents and I weren't concerned until this happened a second time.  This was the morning after Project Graduation.  I had been on the phone with one of my friends after a night of not sleeping and a little upset and the next thing I remember is my brother attempting to pick me up of the floor and the pool of blood I was in.  This was back when cell phones weren't as popular and people still called house phones.  Well my friend said she had heard some strange noises coming from my end of the phone halfway through our conversation that she called the house phone hoping someone would pick it up.  My brother was the only one home and when I seizured I fell, hit my eye on the bed post which gave me a black eye, I bit my tongue so hard that I was bleeding all over the notebook that was on the floor and on the fall down I bruised my whole entire forearm.

After that episode my parents took me to the regular family doctor.  At the end of the visit he told my parents and me that I have to see a neurologist.  We started to worry because this was a specialist that I had to see and neurologist, what could possibly be wrong with my brain?  After doing numerous tests, blood work, EEG's, being monitored for 48 hours, we were given the final diagnosis.  "You have JME which is Juvenile Mycolonic Epilepsy."  My mom had told me a few years later that this was the first time she saw my father cry, that he didn't even cry when his father passed away.  I guess it's because I'm Daddy's little girl and he couldn't do anything to save his little princess from the evil demons.  I don't even want to know what went through my parents minds when they were in that room with me.  All I know is the thought the went through mine, "My life is over.  How could this happen?  Why me?"

That very same doctor that diagnosed me decided to start exaggerating and scaring my parents.  He kept saying that my younger brother was going to get the same diagnosis, and at the time he was 11 years old.  Needless to say no one liked this doctor including myself and we were really lucky to get an emergency appointment with one of the best doctors on the East Coast at NY Columbia Presbyterian.  He made me feel like everything was going to be ok.  He explained my condition with both myself and my parents.  He was genuine when he told me I could live a normal life I would just have a few things to watch for.  His whole approach to the situation was very professional but with a heart.  He told me good news and bad news, but he didn't scare us.

Once I left the office I felt so much better.  I still thought how I couldn't do normal things people my age did.  People my age were going off to college where they could stay up all night and go out and have fun.  Unfortunately I had my license taken away for a little while so I had to stay home and go to school close enough for my parents to be able to drive me.  As a freshman at Centenary College in NJ I was being driven to classes by my mom and dad.  I felt like I was such a "loser" but I knew I had no choice.

I was very angry at one point and started to rebel.  I would go out and lie to my parents about where I was and I would be somewhat reckless.  Well reckless by a person living with epilepsy.  I started to stay up later and just not care anymore.  The feelings and thoughts I had running through my head actually make me laugh right now.  I was so immature and so hurt and trying to blame someone or something for this.  There is no one to blame in this situation, not even yourself.  You just have to learn to live with epilepsy.  It's not a death sentence, it's a condition.

I eventually grew up and started taking care of myself.  I realized what I had done before was not worth it.  What would happen if I had a seizure around people who didn't know what to do or people who were drinking and didn't want to get caught so they would just leave me laying there?  I decided that I can't do that anymore, I have to be responsible.  I got enough hours of sleep, I started to hang out with a different crowd and stay home a little more.  I did things like go to the movies or go shopping instead of going out to a college party or staying up all night.

In January of 2009, I had my first episode in four years.  It had all been because the pharmacy gave me the generic version instead of the regular brand name medication.  So I had to take it easy, yet again.

Since then I have taken care of myself and I have gotten my Masters in Business Administration and have finally scored what I like to call my big girl job.  I've become very successful and it's not just because of hard work.  It was to the help of my family and my parents who at one point I thought my condition would break up the family but they stuck through it and without them by my side I would not be where I am today.  Sitting here typing this blog actually sitting next to both parents with my younger brother studying at Boston University and life is only going to get better.  There is hope, and there is life with epilepsy, you just have to be more cautious than the healthy human being next to you.

Like I said earlier living with epilepsy is not a death sentence it is a condition, only if you believe that you can keep on living with a positive attitude.