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
