Feelin' betterish!

Last week I started to feel sorry for myself and the fact that I COULD have epilepsy for the rest of my life. But, today I am feeling "betterish" about it. "Better" is about epilepsy and the "ish" is on account of school starting and summer being over.

My mom spent a lot of time talking to me and listening to me last week. And I spent some time thinking about things.

What I have concluded: I didn't ask for epilepsy but I have it. I can't change it. Worrying about it won't change anything. What I can do is what Dory said (from Finding Nemo): "Just keep swimming, just keep swimming, just keep swimming, swimming, swimming".

I started Kaitlin's Cauze because I wanted to help OTHERS in the epilepsy community. I wanted to raise money for research and awareness and I wanted to educate people on the disorder. So, I'm going to suck it up, turn my frown upside down, and keep working on my mission.

I might have epilepsy, but I won't let it have ME!

Some days I don't feel like smiling

Everyone comments on how much I smile and how rare it is when I'm not smiling. Smiling isn't something I think about doing, it's just a reaction to what is going around me.

Last night I wrote an entry but my mom decided to delete it because it seemed to be negative and that's not the spin we want my blog to have. But, it was what I was feeling at the time.

My parents describe me as happy go lucky person. I don't let too much make me sad or mad, and even then whatever caused those feelings usually ends quickly and life goes on.

Friday's appointment with my neurologist didn't go the way my mom had hoped. She's a nurse, she knows her medical stuff, and she wanted definite answers. My neurologist couldn't give definites.

What we DO know is that my last eeg in June only showed generalized seizures, called absence seizures. Generalized simply means that the seizure activity involves the whole brain. Absence seizures (pronounced AB-sonce) are the type of seizures that last briefly (mine were only 5 seconds) and the person has a vacant stare. After the seizure is over the person resumes whatever he/she was doing before the seizure and has no idea that the seizure even occured.

Apparently there are a lot of different types of epilepsy syndromes and even more seizure types. I bet you didn't know that.

If I have absence epilepsy this COULD be outgrown. If I have JME this would be a life long condition.

I was hoping it would be the absence type. My neurologist, after speaking to my mom on Friday, feels that it's a high possibility that I have JME. The only GOOD thing is that my eeg didn't show the "polyspikes" that you would see with JME, but according to my neurologist that doesn't mean anything really. So, it's really not THAT good.

Epilepsy syndromes and seizure types are CONFUSING and I don't think I want it anymore! Knowing I may have JME and that it would be life long doesn't make me want to smile. My mom said that having seizures and taking medicine for the rest of my life is no different than my sister having asthma and having to use her inhaler the rest of her life. She said that seizures can be scarey, but not being able to breathe during an asthma attack is just as scarey. That makes sense but doesn't exactly make me feel better, or make me feel like smiling.

I know that when life hands you lemons you're suppose to make lemonade. I don't feel like squeezing the lemons, adding the water, and adding the sugar just to make lemonade. Can't I just find someone with a papercut instead?

Living healthy with epilepsy

It's very important for me to live a healthy life style in an effort to keep my seizures under control. Living healthy is something I have control over which ultimately could control my seizures, this makes me feel like I have control over my epilepsy.

Sleep deprivation is a known seizure trigger for many of us with epilepsy. I make sure I get at least 8 to 10 hours of sleep each night. My mom also makes sure I get my rest by not allowing me to have 2 back to back sleep overs so I can have a night to catch up on my sleep. My parents also make sure I don't have 2 big days in a row without a day in between to rest. When I am extra tired I have myoclonic twitches- my arms, shoulders, and legs become "twitchy" as I am falling asleep.

I take my medicine as instructed by my doctor. For me this means twice a day- at 9:00 a.m. and 9:00 p.m. I don't deviate from this schedule too much, it's important to keep the medicine at the correct level in my blood stream at all times to avoid seizures. Even if you feel like your seizures are under control you should NEVER stop taking your medicine unless your doctor tells you to do so. Stopping your medicine could cause seizures to occur. Missing a dose of your medicine could also cause a seizure. That happened to me ONCE.

My mom does not allow me to drink a lot of caffiene. Caffiene could cause an increase in the number of seizures a person has. She also makes sure I eat semi-healthy. I am a very picky eater but am getting better. Eating a balanced diet is important for everyone anyway. I don't like a lot of vegetables so my mom found ways to make sure I get my servings of veggies each day.

I'm not perfect with my eating habits, but I am working on it. I take a multi-vitamin made for teenage girls once a day to supplement what I don't get in eating. Word of advice, don't take your multi-vitamin on an empty stomach as you could get sick. I have to take mine after I eat to avoid being sick.

Obviously, I don't do drugs or drink alcohol. Nobody should, especially those with epilepsy. Both drugs and alcohol can trigger seizures, not to mention fry your brain cells.

I avoid strobe lights and lazers but we're not sure if this is a trigger for me or not. Last December I went on a ride that had lazers and strobe lights and I was fine. However... if you put any type of toy gun in my mom's hands (dart gun, water gun, or lazer gun) she will ultimately revert to being a kid again. That ride was no exception and the minute we rounded the corner away from the ride attendants she pointed the lazer at my dad and said something like "you'll never take me alive..." I think she intentionally distracted me so I wouldn't look at the lazers and strobe lights. I am going to ask my doctor if I can go to a concert in November. Hopefully, she'll say it's ok.

I also get plenty of exercise by playing softball in the spring and fall, by swimming in the summer, and by running with my dog during agility. Exercise won't keep me from having seizures but it gives me something to do and makes me feel good about myself.

Most importantly I find reasons to laugh. Laughing is good for everyone. If you don't believe me, just google it. :D