Life Interuppted

My apologies for disappearing from all of you.  Life has a way of interrupting our best intentions.  I became busy with other endeavors.  The end result was that I completely stopped all advocacy work and concentrated on just being Kaitlin.  I did have another blog, but I recently deleted it and decided that if I could ever figure out how to get back into this one, I'd just start using this again.  This was my very first blog and so much work went into it that I felt it just needed to be revived.  I combined the name of my other blog with the content of this blog just because I liked aspects of both.

To catch you all up quickly- I am officially old enough to vote :)  I've been living with epilepsy for almost seven years and have been involved with so many amazing non-profit organizations.  My goal was to always help bring epilepsy out of the shadows, to educate and empower.  I've gotten to work with The Epilepsy Foundation of Western/Central PA, The Chelsea Hutchison Foundation, and The Danny Did Foundation.  I also got to launch my own little non-profit- Kaitlin's Cauze. 

Through all of my advocacy work, I learned a lot, and I can only hope that others have learned from me as well.  My journey with epilepsy was an open book, and I had no problem sharing the good and the bad so people would understand how epilepsy can impact an individual's life.

Thankfully, my seizures are now 100% controlled.  I have gone over four years without having a tonic clonic or complex partial seizure, and my last simple partial was well over a year ago.  Since my seizures are so well controlled, Captain "Jack" Sparrow, my seizure alert/response service dog, has entered into full retirement and is mostly enjoying life as a normal dog (I say mostly, because he still gives me sad puppy dog eyes when I leave the house without him). We also disconnected my EMFIT monitor.

I recently passed my driver's test and am now a licensed driver.  It was a slow process because we wanted to make sure it was safe for me to drive.  For that reason, we actually waited until I was 17 to get my permit- which required my neurologist to sign off on medical papers and be approved by the medical advisers with the Department of Transportation. Learning how to drive took 11 months because the side effects from my medication were making me too tired to safely be behind the wheel.  Earlier this year, my neurologist and I made the decision to decrease my Keppra to see if the side effects would decrease.  Fortunately they did, and I didn't have any breakthrough seizures from lowering the dose- during that period I didn't drive at all until we were certain I would be okay with the decrease.

Last April I began working at an amusement park as a ride operator.  I love my job and have enjoyed meeting new people.  My body has been able to handle the stress of the hot summer days and long working hours (sometimes up to 14 hour days) with no signs of seizure activity.  I'm looking forward to the slower pace of the fall/winter season and having the time to get to know my coworkers a little better.

I graduated in June but so far, have no future plans for college.  I'm unsure of what I'd like to do with my life, so I'm taking some time off to consider my options.  For now, it's just been fun to enjoy a normal life without seizures and medication side effects- it's the first time in seven years that I've had this opportunity so I kind of feel like I have a lot of time to make up for.

I promise I'll try to do better with my blog and being a better voice within the epilepsy community.  I've been given this amazing opportunity to be seizure free and I think it's important to help advocate for others so they can have this same opportunity.

~Kaitlin

Who Am I?

getting ready for my dance recital, 6 months before my first seizure

goofing with my brother, one month before my first seizure

4 hours after my first seizure

two months after my first seizure

starting Kaitlin's Cauze, 4 months after my diagnosis of epilepsy

pitching in softball 6 months after my diagnosis of epilepsy

riding roller coasters 2 years after my diagnosis of epilepsy









and finally...

me today
graduating intermediate training class with my service dog in training

Take a good, long look at all of these pictures.  Do you see anything different from picture to picture?  Can you tell the difference between the "before" epilepsy and the "after" epilepsy pictures?  No?  That's because I'm still the same person I was BEFORE I was diagnosed.  Nothing has changed about me, except I now have epilepsy.  I don't look different nor do I act different (unless I'm actually having a seizure:).  I am still ME. 

I am still a daughter, a sister, a grand daughter, a niece, a cousin, and a friend.  I still like chicken nuggets, hotdogs, pizza, tacos, and ice-cream.  (I'm still a picky eater too:)  I can still play sports, swim, play in the snow, ride horses, and ride roller coasters.

I still get good grades, but I do work harder to get them.  I can still play drums and keyboard.  And I can still sculpt in my weekly art class.

There is no need to feel sorry for me or treat me any differently.  What I have is not contagioius.

People with epilepsy are no different than people without epilepsy.  People with epilepsy are no different than people with other disorders or illnesses.  In fact, people with epilepsy are doing amazing things every single day.

Epilepsy is one of those prevalant disorders; chances are at some point in your life, you will know someone who has seizures.  1 in 10 people will have at least one seizure in their life and another staggering 1 in 26 people will go on to have epilepsy.  That one person could be you, your best friend, your family member, your co-worker...

Learn the facts about epilepsy because you NEVER know when you may be called upon to help someone who is having a seizure.

Hello to Rick Harrison:)

Cool news today; my mom's friend is in Vegas and plans on taking a trip to a Pawn store.  I'm sure you know the one I'm talking about, they do a tv show called Pawn Stars.  I personally don't watch the show, but my dad is a big fan. (I'm more into the paranormal tv shows:)

Anyway, my mom asked her friend, that if she has the opportunity and gets to meet Rick Harrison, to send him my way; to Kaitlin's Cauze blog.

Mr. Harrison grew up having epilepsy and he was featured in the last edition of Epilepsy Advocate. 

I am hoping Mr. Harrison will visit Kaitlin's Cauze on the web and take a few seconds to sign my guestbook.

Mr. Harrison, thank you for being an advocate.

Love,
Kaitlin

Texting All Teens!!!!

Are you tired of your parents nagging you about taking your medicine?  Are you wanting to take more control of YOUR epilepsy?  Do you like texting?

If you answered yes to any of the above questions, READ ON...

The Epilepsy Foundation has made it possible, through funding from the Centers for Disease Control,  for a texting service to be implemented for teenagers with epilepsy.  The program, called Care Epilepsy, is a text messaging support that is availabe to teenagers with epilepsy.  It is designed to remind you to take your seizure medication and will also send motivational messages via texts, to help you stay positive and help empower you to take control of your epilepsy.

If you would like more information please contact:

Temi Aregbesola at taregbesola@efa.org or Jody Kakacek at jkakacek@efa.org

You can also call: 301-918-3478 or 301-918-3722



Jack of all Trades

I haven't updated on Jack lately, mainly because I've been busy training.  He is now one year old.  This last year has been filled with lots of ups and downs for us, mostly ups.

I can't imagine not having Jack in my life.  He is my constant shadow, my four legged protector, my extra set of eyes, and my friend.  He started alerting to my seizures in September of 2011.

His first alert was 8 hours prior to the actual seizure.  Fortunately he has fine tuned his alerting skill; with my last seizure he alerted 30 minutes prior.  He becomes extra "clingy" and whines and licks me as an alert. 

His training is going well.  In addition to the "basics" he also has advanced obedience training.  He will go "down" with me giving a hand signal from 30 feet away.  He also does a pretty fierce "down" on "recall", meaning as I call him to me I tell him to go "down" and he immediately drops down into position.

I can put him in a "wait" as I unload the car and walk 30 feet away, and he maintains the position until I call him to me.

We've been working him hard and increasing our expectations of him.  Even when we are out doing public access training, we add constant distractions to make sure he is on top of his game.  These distractions can be anything from a ball bouncing directly in front of him to a plate of food set down beside him. 

He's already trained to retrieve my emergency medicine, water, and a phone.  In addition to those tasks he is getting pretty good at recognizing my complex partial seizures and responding without any verbal commands.  He is proficient in recognizing a tonic clonic and responding on his own, without any commands given.

Jack will continue to be in training for at least another 3 months, maybe more.  We want to make sure he is proficient 100% of the time, in all situations, before we test him out and graduate him.

It's been a lot of work training him, but it's been worth every second of it.

Kaitlin

Operation Snowball

In keeping with the holiday spirit, Kaitlin's Cauze has decided to commence Operation Snowball.

Three years ago, prior to Kaitlin's own diagnosis of epilepsy, she started a "pay it forward" Christmas project. It was her way of spreading a little Christmas Joy.  Less than two weeks after starting her project, she had her first seizure which was then followed by a diagnosis of epilepsy on December 17th, 2008.

This year we decided to have another go at it, and include different twists.  Our reasoning is simple: it's Christmas!!! We believe that by focusing on others, it helps take our minds off of our own problems.

Operation Snowball (the name was suggested by Kaitlin's brother:) is a pay it forward type of project.  The mission, should you decide to accept, is simple...  Simply choose a stranger or a person in need, for a random act of kindness from YOU. 

You may do any type of act of kindness that you want.  The one exception is: no home-made food. 

1) You can give a gift, money, or do something nice for a stranger.
2) All random acts of kindness MUST be done anonymously.
3) A Kaitlin's Cauze note must be included with whatever act you do. It is up to you to figure out how to include the note in your act...

FOR ALL PEOPLE WHO HAVE RECIEVED AN ACT OF KINDNESS OR GIFT, these are your instructions:

1)  Pay it forward using the instructions above.
2)  Leave a comment under this blog post and tell us where the snowball landed (the act of kindness) example: the snowball landed in Orlando, Florida.  You may then describe what happened to you, if you want. example: the snowball landed in Orlando, Florida when a complete stranger paid for my lunch.
3)  Please visit: Kaitlin's Cauze to learn more about epilepsy

Operation Snowball will end at midnight on December 25th. Kaitlin is hoping to have a lot of participants!!!! 

We want to wish you all a very Merry Christmas.

Trans Siberian Orchestra donates to the Epilepsy Foundation

Trans Siberian Orchestra

Every year the Trans Siberian Orchestra hits the highway for their annual winter tour.  If you've never been to one of their holiday concerts, you are missing out on some amazing, jaw dropping, head banging music.  They have somehow managed to combine opera, orchestra, and  heavy metal into one unforgettable performance.  Highly recommend!

TSO just isn't about the talent. They GIVE back to the community. Every year, during every concert, in each community they play in, they donate $1.00 from EVERY ticket sold to local charities/organizations.  Let me assure you, they sell out the "house".  In my area, we are talking TWO concerts with a crowd of 15,000 PLUS.

This year Kaitlin's Cauze decided to contact the radio station that sponsors the TSO concert in our area.  The request was simple: please consider choosing the Epilepsy Foundation of Central PA as a recipient of this year's donation.  What better way to raise epilepsy awareness than in front of a crowd of thousands?  WINK 104's John O'Dea came through and the request was approved! 

Our local Epilepsy Foundation has been notified and will handle the details.  We are hoping the news of this donation was a  nice surprise for them. We appreciate what the foundation does for the epilepsy community and this is our way of saying "THANK YOU".

If you live in the area, make sure you catch one of the concerts at the Giant Center in Hershey, PA on November 20th.  Make some noise when the check is presented! Maybe we'll see you there!

Onward and Upward...

In spite of outside attempts at interference into Kaitlin's Cauze, we just wanted to let our viewers know we are still going strong and we are NOT going anywhere.  In fact, you can check out our new logo to the right of this post:)

Some important dates are coming up this week and we want to make sure you are aware...

Tuesday, September 20th from 4:00 to 9:00, Kaitlin's Cauze will be hosting "Kaitlin's Family Fun Night" at Friendlys on High Pointe Blvd.  Proceeds raised will benefit a local woman who is raising money for her own seizure response dog through Susquehanna Service Dogs. Stop by for dinner or just for ice-cream; make sure you stop by and say hello to Captain "Jack" Sparrow, Kaitlin's service dog in training, from Noelle's Dogs Four Hope.  We will have some pretty cool items in our drawings, so make sure you check out our table that will be located at the entrance.

Sunday, September 25th from 10:00 to 1:00, Kaitlin's Cauze will be holding Pennsylvania's First Annual Chelsea's SUDEP Awareness Walk, at Shank Park in Hummelstown.  Kaitlin has coordinated this walk to take place at the exact same time the Colorado walk will be taking place.  Again, lots of pretty amazing items will be in our drawings and you won't want to miss the opportunity to win a Caribbean vacation! Money raised from this event will go directly to the Chelsea Hutchison Foundation. 

If you would like more information regarding the walk, please email Kaitlin at: kaitlinscauze@comcast.net

We hope to see you at one or both of these events!!!!

Chelsea's Creations

Chelsea Hutchison
September 28, 1992 - April 19, 2009



As promised, details of a new project are being announced.  We have been given the green light by Julie Hutchison to create and publish a cookbook with all proceeds going to the Chelsea Hutchison Foundation in Colorado. 

This book will not only be full of recipes but will include many surprises as well.

We are accepting recipes from everyone.  Please feel free to send your favorite recipes to kaitlinscauze@comcast.net  Make sure to include the name you want listed under your recipe in our book:)  You can send as many recipes as you like.

We are also accepting favorite recipes for the ketogenic diet, the modified atkins diet, and peanut free diets.

Thanks in advance!
Kaitlin and Caroline

Trivia Question #22

If Santa left the north pole he would most likely stop by northern Asia first.  Northern Asia is closest to the north pole and on the western side of the international date line...

In the movie "White Christmas" what is Bob Wallace and his friends trying to save?  Email answers to kaitlinscauze@comcast.net

Trivia Question #21

The name of the dog is MAX.

Santa leaves the north pole on Christmas Eve.  Where is his first stop to deliver toys?  Email answers to kaitlinscauze@comcast.net



Trivia Question #20

The Grinch was from Mt. Crumpit, the mountain just north of Whoville.

In the cartoon classic "How the Grinch Stole Christmas" what was the dog's name?  Email answers to kaitlinscauze@comcast.net



Trivia Question #19

The angel's name was Clarence Odbody.

In the original cartoon movie "How the Grinch Stole Christmas" where did the Grinch live?  Email answers to kaitlinscauze@comcast.net



Trivia Question #18

Alvin wants a HULA HOOP!

What is the name of the angel in the classic Christmas film "It's a Wonderful Life"?  Email answers to kaitlinscauze@comcast.net



Trivia Question #17

The original title of the Twas the Night Before Christmas was A Visit From St Nicholas.

What does Alvin want for Christmas?  Email anwers to kaitlinscauze@comcast.net.



Trivia Question #16

The United States Post Office Department issued its first Christmas stamp in Pittsburgh, Pennsylvania, on November 1, 1962.

What was the original title of Twas the Night Before Christmas?  Email answers to kaitlinscauze@comcast.net.

Trivia Question # 15

Paul O'Neill came up with the name Trans Siberian Orchestra as an analogy to the Trans Siberian Railroad.  The railroad links two cultures together, much like music...

What year did the United States Post Office issue its first Christmas stamp?  Email answers to kaitlinscauze@comcast.net

Trivia Question #14

The last state to declare Christmas a legal holiday was Oklahoma.

How did the Trans Siberian Orchestra get it's name?  Email answers to kaitlinscauze@comcast.net



Trivia Question #13

Round or oval candies filled with fruit preserves or cream and covered in chocolate are called SUGAR PLUMS.

What state was the last to declare Christmas a legal holiday?  Email answers to kaitlinscauze@comcast.net

Trivia Question #12

If you received every gift listed in the song "The 12 Days of Christmas" you would end up receiving 364 gifts.

Round or oval candies filled with fruit perserves or cream and covered in chocolate are called what?  Email answers to kaitlinscauze@comcast.net