Fear Factor.

As we trudge along in our week, sharing our best epilepsy related facts for epilepsy awareness month, I'd like to take a moment to talk about something more than what epilepsy is.  I want to talk about what epilepsy does.  And I'm not referring to the actual changes that take place during a seizure, although if you'd like, I'd be more than happy to talk about that later.

The picture above was taken approximately 6 hours after Kaitlin's very first tonic clonic seizure and subsequent trip to the hospital via ambulance (none of which she remembers).  You can actually see the bandage on her hand from the IV that was placed in the emergency room.  After blood tests and the CT scan came back normal. we were discharged to home with no explanation as to what in the hell had just happened. 

I've since learned that our experience is pretty typical for a first time seizure/ER visit.

Typical doesn't imply acceptable, but I'll save this thought for another post.

Lack of knowledge and understanding can create an unjustifiable fear of the unknown.  December 13, 2008, would be our first experience with that gripping fear.

It sucked.

Over the next few months, we lived in a constant state of fear- afraid of when and where the next seizure would occur.  Looking back, I can understand that we spent more time afraid of the seizures than Kaitlin did  having a seizure.  Epilepsy can create an unreasonable state of anxiety.

By the time six months of our life sentence rolled around, we were breathing a little easier.  She was responding very well to her very first medication, and she wasn't having any further seizures.  I remember thinking how strong I was, because I was letting her out out of my sight and I was letting her go out with friends again.

But deep down, I was still fearful and anxious.

(I just got better at hiding it.)

Until one day when my doctor asked me how I was doing, and to my utter embarrassment, I completely broke down in front of her.  I shared my worst fears and my greatest stress, I shared my complete exhaustion, and my overwhelming sense of failure.  Five minutes later she handed me a box of tissues and a prescription for Ativan.  Epilepsy can reduce you to tears.

We made it to one year seizure free.  Or so we thought.  Turns out we really didn't, but ignorance is bliss, and we needed to believe that we made it.  We needed to have a reason to celebrate, and we needed to have hope because epilepsy can steal your joy from every day life.

2010 was a complete nightmare and we found out that Kaitlin was really having numerous seizures every hour, they were just so subtle that unless you really watched her, you'd completely miss it.  However, just because you can't see a seizure, doesn't mean it's not happening or having a negative impact on the person. Epilepsy can create a state of unpredictable chaos.

In 2011 we were given answers to all of our questions, and we were told that we should be able to get the seizures under control (there are no guarantees in epilepsy), but if we couldn't, they would send us to a larger hospital in Ohio to help us in our battle. And even though, later in that year, we once again reached another important milestone (no tonic clonics!),  we didn't celebrate or make a big deal of it, because we were just waiting for the other shoe to drop.  Epilepsy can create pessimism.

Those six months turned into a year without a tonic clonic seizure, but instead of being happy,  we became increasingly frustrated because she was still dealing with the simple partials on a very daily basis. A trip to Ohio was becoming a very real possibility. We were fearful for her future and her present.  Epilepsy can be frustrating.

When we finally reached our point of seizure control (in 2014!), we stepped back from all of our advocacy work, and from epilepsy in general, in order to catch our breath.  We needed privacy and time to sort it all out.  And we needed time to rest our weary and battered bodies, because epilepsy can exhaust you.


Today, we are well beyond our one year anniversary of 100%, total, complete seizure control.  Her last tonic clonic was medically induced in February, 2011; her last complex partial was related to her hospital admission, and was also in February, 2011;  and her last definite simple partial was in March of 2014.  Her service dog has been retired, she has her driver's license, we made it through a dosage decrease without any seizures, and she is beginning to enjoy her life.

Despite all of that, we have decided that it's time to re-enter the ring and rejoin the world of advocacy, because epilepsy knows no boundaries and will continue to impact the lives of millions of people.  Won't you please join us in our efforts to bring epilepsy out of the shadows?


With love,
Kim

Raising Kait

Today is the first day of Epilepsy Awareness Month, and ironically, the day after we had to deal with a small situation that occurred while "The Girl" was at work.  It's hard to believe that we have been on this journey for six years, ten months, and two weeks- not that we're counting or anything...

Seven years ago, I wasn't sure how we'd get through the day, let alone seven years in seizureville.  But, we made it.  We're still making it.  And I have no doubt that if you are reading this and questioning how you will survive this new life thrust upon you, you will figure it out and will make it too.

We didn't ask for this life.  I don't think anyone sits around raising their hand to volunteer for life with a chronic illness/disease/disorder (whatever you wanna call it), but we're here and we may as well figure out how to deal with it the best way we can.  Which is exactly what I told Kaitlin in December of 2008.  Learning to deal with it, is the best way to get through it.

We have done our best to teach Kaitlin to take ownership of her epilepsy.  That means for the last six years, ten months, and two weeks- she has been responsible for taking her medication- every. single. day.  Proud mama moment is knowing that in all that time, she only ever forgot to take it once.  She learned a difficult lesson that afternoon, and I know the consequences of her forgetfulness have made her more vigilant when it comes to taking her medicine. 

We've taught her how to advocate for herself, and for others who are affected by a seizure disorder.  Another proud mama moment is knowing that she DID make a difference in so many lives, just by being transparent in her own journey with seizures.  It's not easy for a teenager to share the very details that make her stand out from her peers, but she did so for the greater good of every child living with epilepsy.

Kaitlin has always had to have a plan B, and sometimes a plan C and D.  Seizures and medication side effects often create a state of unpredictable chaos, and you frequently rely on the backup plan to help you retain a sense of normalcy (although life with epilepsy is anything but normal).  Sometimes plan B is simply knowing what you'll do in an unexpected situation.

This past year, Kaitlin got a job at a local amusement park (which she absolutely loves). She chose to disclose her epilepsy during the interview, even though by law, she wasn't required to do so. While she doesn't go around discussing her epilepsy every day, she doesn't hide it either.  It's important to know that should something happen, someone around you will know enough about what is going on, so they can lend a helping hand.

Which is what happened last night while she was at work.

Somehow the small pill case fell out of her pocket while she was attending a ride.  She didn't realize it until it was time to take her pills.  Knowing my daughter, I am quite sure a moment of panic set in, but she kept her composure and enlisted the help of her ride lead (who then enlisted the help of maintenance, upper level management, security, and medical) and was able to handle the situation appropriately.  As a mom, it's a relief to know they had her back, even though I'm sure it caused some disruption to their routine. Each person who came to her assistance recognized the importance of the situation and the urgent need for a positive resolution.  

Raising Kait to speak up for herself in regard to her epilepsy was by far, the most important thing that we, her parents, could have done for her.  Instilling a sense of empowerment and allowing her to take ownership of her lifelong disorder is what will help keep her safe and healthy.

As the first day of Epilepsy Awareness Month begins, I thought it would be appropriate to share our experience with you. Epilepsy research is still grossly underfunded in comparison to other neurological disorders, and the need for awareness is very real. Awareness creates unity, and unity creates comfort in knowing you aren't alone. Recognizing that nobody needs to walk this journey alone is the lesson we hope you will take away from this post.  Don't be afraid to talk about your epilepsy.

Thanks for reading,
Kim

 

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