five random thoughts.

1. So, I joined a gym a couple of weeks ago. It was something that I was debating about, something that I wasn't 100% sure about, because I knew how much I lack at self-motivation. By paying for this membership, I would have to force myself to actually go, or else I'd be throwing my hard earned money down the drain, towards nothing. So, I've been going.

I miss working out with my personal trainer in Florida a lot. It might be a self-conscious thing, because I do know what I am doing in the gym. (Mark did teach me a LOT over the years.) The thing is, when I'm there, actually doing it, it makes me nervous to actually legitimately lift weights... even though I know that I know what I'm doing. So today, I did some dead lifts. I felt weird about it, but I did it. I think it was the first step in the process.

I'm also thinking about doing some fitness classes, too. I have a list of classes for the month of December, I just have to pick some out and go.

(I also desperately need to get myself in the pool. I miss lap swimming more than anything. That's my real cardio love. Even though I run all of the time, swimming is my true love.)

2. I'm getting to know myself again. When I lived in Florida, I was always busy. I worked multiple jobs, worked out a lot, and was social with my free time. Some days, I was so exhausted that I would fall asleep on the futon watching a movie with my roommate. (On that note, I still haven't seen the entire Silver Linings Playbook. Sorry Kath.)

So, I've been stepping out of my comfort zone and not allowing myself to work two jobs for as long as I'm in Indiana. I've been spending time with friends and family.. and have been going to the gym for the last few weeks. That has been very important. It has been tough, though, because I'm used to always doing something. I'm used to being busy.

But, I've been reading, writing, thinking about the future, and processing the present.. and it has been good. I'm remembering things that I love, things that I've stopped doing. (like the writing thing.)

I've had the idea to start a photography business. I remember how much I loved photography when I took classes in high school. I wouldn't make it my main source of income, but I may invest in a dslr after Christmas and do some photography around town.

(starting with my mom's engagement photos. no, mom, I haven't forgotten you.)

So, by getting to know myself, by giving myself that time, I'm getting excited for the adventures that lie ahead for me. I feel like I have some good opportunities ahead, I just have to make some decisions. I'm pretty fortunate in that sense.

3. My friend Latefa moved back, too. I'm actually pretty excited about this one. I came back to Indiana, knowing that most of my friends had left and the ones that were still in the same state were definitely not in the same town... then, one day, I got a text when I was out on a run that said, "I'm home!"

After a confusing conversation, I realized that my friend had moved back, too. She didn't tell anybody that she was coming, so she blew me (and her family) out of the water. She moved away several years ago, too, so we had not gotten to have real time together in a very long time. She has jumped right onto my adventuring ideas, though, and we have had a good time.

We've talked a lot about the future and about traveling together, so maybe that will happen eventually.. We went to France together in high school, which was incredible. Now we both want to go to all of the places. It is fun to have a friend with that kind of a mindset, too. I'm very thankful to have her in town.

(even though I think my grandma likes her better than she likes me!)

4. November was a half-success. I didn't succeed at the National Novel Writing part.. life kind of got in the way. (again.) I am a little disappointed in that, but I know that I will eventually get my writing out there. I did write some really powerful pieces about my state of mind, so I'm glad with that. I may try to get one or two published.

I did really put it out there with my Epilepsy Awareness Month personal campaign. For the past few years, I've only talked about it on the internet, through my various social media platforms. This year, though, I was able to talk about my journey with people in person. I am much less inhibited about the issue than I have been in the past. Over the years, I've just become more comfortable with explaining epilepsy to other people, whether it be my own story, or the stories of other people that I know. I think that is important.

I'm excited to keep educating people. I hope that, eventually, I can share it on an even bigger platform that I can right now. I'm working towards that. It's a pretty big deal.

5. I'm excited for the next month or so. My best friend is coming to town for a week and a half or so pretty soon. I can't wait to have some Indiana adventures with her. (and to spend some time with my second family.)

I also have the Walt Disney World Marathon Weekend coming up in a month. I'm already freaking out a little bit. I don't feel ready, and I know that I'm not ready, but I'm working towards it. I won't PR again, but I'm keeping my fingers crossed to have a great time. (because, I usually do.) I'm also very excited to see my Orlando friends that I miss so much. I won't be there for long, but it will be wonderful to have that time with them. I do want to scoop them all up and bring them with me on the rest of my adventures.

Then, there's also Christmas. I love Christmas.  I'm a complete Christmas fanatic, I love giving gifts, I love decorating, I love the family time... it's one of my favorite things. I also love going to Christmas Eve Mass. Oh man. I'm very glad that I am in town and that I will get to enjoy all of these thing with my family. If there is nothing else that I learned from living out of state for so many years, it's how precious it is to spend the holidays with family. I'm very excited for this year.

(even though I have to work. it will be wonderful. love love.)

 

and here's a photo for photo's sake.

this is from October, going to play in the woods with my special two year old nuggetty-cousin.

My Epilepsy Story.

It's November. November is the most important month of the year to me, for so many reasons.
(not to be confused with October, which is my favorite month, for different reasons.)

One extremely important thing about November is that it is National Epilepsy Awareness Month. Now, I know that I have been on my soap box about epilepsy so many times, on so many social media platforms, but I have to talk about it here, at least annually.

My story starts back when I was a child, back when I first heard about epilepsy. It was probably 1996 or 1997, when I was 9-10 years old. My dad had a seizure when I was at his house for the weekend. I didn't know what it was, but I could hear him. Thankfully, he felt it coming on and he left the room so that he would not upset my brother or me. He went to the back of the house and I heard strange noises coming from back there, but I did not go back there to check on him. I was concerned, but I was also worried about my younger brother being worried, too. I stayed and continued to play video games, trying to figure out what the strange noises were.

That night, after my brother, Cody, went to sleep, my dad sat me down and explained epilepsy and seizures to me, in the best way that he could explain it to a child. I distinctly remember that conversation. He said that his brain sometimes sends bad signals, that it can make his body do strange things. I tried to understand, but clearly could not truly comprehend seizures or epilepsy, because I was so young. However, I was glad to know that he trusted me enough to try to explain it to me, so that maybe I could understand what was going on.

In August of 1997, my dad died from a massive seizure. I was ten and my brother was eight. It was so difficult to move past that massive loss in my life.

Sudden Unexplained Death from Epilepsy (SUDEP) is a real thing and a problem. Someone with epilepsy is impacted and affected by so many different things, numerous risk factors. Alcohol, irregular medication use, frequent changes in medication, a history of seizures during sleep, and many more factors go into the risk of SUDEP. It is scary to think that so many people have died from something that the public, in general, seems to be so unaware of.

I remained uneducated and unaware for a very long time, for over ten years after my dad died. I knew the little that I knew about his epilepsy and about his death, but I did not go out of my way to learn any new information.

(this is my dad and me, circa October 1986)

 

Then, in November of 2008, everything changed for me.

When I started having seizures, I was going through a time of high stress. I was in my fourth year of college, but had just changed my major, adding on a few more semesters of school, I had two jobs and 18 credit hours. I sometimes worked until 1 or 2 in the morning, and then would go back to work at my other job at 8, before I headed to my classes for the day. It was also a time of relationship drama, as I was in the middle of a very unhealthy relationship with somebody that I worked with. All that being said, all of the stress that was on my shoulders at that time, I did not have enough epilepsy knowledge to truly understand what was happening in my brain.

My first seizure, I was home by myself. I was reading a book on the couch. I remember feeling strange, kind of like some kind of deja vu, then I started to feel panicked and anxious. I hallucinated, also. Afterwards, my heart was racing and I felt nauseous. I had no idea what had happened, but just let it go. I had minimal knowledge about epilepsy or seizures and had no inkling that I could have just had a seizure.

As the "panic attacks", as I called them, started to become more frequent, I started to wonder if I had schizophrenia. As a psychology major with an interest in psychological disorders, schizophrenia was one of my biggest fears. I was very aware that the typical onset of schizophrenia was in the early twenties, which, coupled with the hallucinations, led to my belief that I did have schizophrenia. I did not actually tell anybody about my fear, called my seizures "panic attacks" and, really, only told two people that I was dealing with them.

At the end of February 2009, I had my first actual tonic clonic seizure. I was at work and chopping lettuce for some salad preparation. I started to have one of my "panic attacks", but noticed that that one seemed a little bit more intense than usual. My vision started to get blurry, then I remember waking up with a group of people standing around me. I was lying on the ground. It felt like I had been dreaming. Somebody said that it looked like I had a seizure and asked if I had a history of seizures. I said no, but started to think seriously about the past several months.

After an emergency room visit, several tests, including an EEG (yes, that was weird.. lots of tubes sticking out of my head.), wearing a heart monitor for 24 hours, among other things, I was diagnosed with.. nothing. All of my tests came back normal. I had a syncope episode.

I was angry and frustrated with that (lack of) diagnosis. I knew that there was something bigger, something deeper than just passing out. If that was the case, I was sure that I wouldn't be having the episodes so frequently. I clung to the idea of the epilepsy, of seizures, and researched as much as I could about them.

I had my second tonic clonic seizure in June of 2009, several months later. I was asleep when I had my seizure, but fortunately, I woke my roommate. Knowing about all of the months of undiagnosed episodes, she wrote down, in detail, everything that she saw. She ended up waking me up at some point, I called my mom, who came to pick me up and take me to the hospital.

That time, I got a diagnosis, medication, and a bunch of emotions to deal with.

Partial complex epilepsy..
So, typically, it doesn't look like I've had a seizure. I don't often have tonic clonics, though I have had them. You would not typically, by looking at me, know that I'm having a seizure.

--

It has been a long road getting accustomed to my diagnosis, my medications, and my lifestyle. I do have it better than so many people, but that doesn't mean that I'm not impacted by seizures, by epilepsy. It is a part of my life.

I do talk about my epilepsy often. I try to explain different types of seizures, basic first aid, and different facts about warning signs and so on. I think that awareness is the most important thing. If I can make one person more aware or more interested in spreading that awareness even further, I will have accomplished something. If I can get people to seek out more information, to learn something about epilepsy, I will be even more accomplished.

I advocate for knowledge, for awareness.. I believe in talking about my epilepsy, so that someone else can learn something new. I didn't know anything about epilepsy until it touched my own life personally. I also advocate for more research. Neurological disorders are important. So important.