New Years!

Falling off the face of the earth is my new thing, I guess.

Today is New Years Eve, as you may know. Tomorrow is the start of a new year: 2016. I feel like it was just 2012 (A pretty random year, I know). I am not usually the type to make any real New Years resolutions. In the past, maybe when I was 14, I would make a stupid goal: Get a boyfriend! I look back and realize that was ridiculous. That is not a New Years resolution I should have made. Especially being that that has not yet happened. Sooooo, that was six years ago, and since then, I haven't made any "real" goals for the New Years. But, I feel like that should change. Anyone can make goals. You can make them at anytime. New Years seems like a great time to make them because it IS the start of the new year, and it is a fresh start. No dwelling on the past.

The thing is, I am not so great at making goals. I've tried to write them down, but that never works for me. But this next year, 2016, I am going to try and change that. I'm 20 years old, and I want to figure out what I want to do next with my life. People are always telling me that I am young, and I have a long time to figure out what I want to do. I'm kind-of tired of hearing that, because though 20 is pretty young, I'm growing up, and now is the time to make some decisions.

Ever since I got back from Idaho, I have felt like a nobody. I look around and see all these people doing things with their lifes, while I'm trying to figure out what move to make next. I've been feeling insecure, though I'm trying not to let it show. I've been making some changes in my life; you know, to make me happier. It's been hard because my best friend is in California until this next year, and so I have no one to hang out, and share my thoughts and feelings with. I have no one to go do stupid things with.

As for my Epilepsy, nothing has changed all that much. I have seizures once a month around "that time", and the two I have last about five seconds. I'm fully aware during them, but it's still just as hard.

Something exciting though: My Neurologist told me at my last appointment, that I would probably be able to get my drivers license in the next year. I was confused because the Utah state law is that people with Epilepsy have to go three months without any seizures in order to get their license. My Neurologist told me that that only applies to those people that are not aware during the episodes. I, on the other hand, am fully aware during the seizures.

I am more than ecstatic that this may happen soon, but I am also going to make sure I am comfortable enough before I get my license.

I'm going to make some New Years resoulutions tonight and tomorrow. I am hoping to follow them.

What Does The VNS Sound Like?

Hello all! For the third time, I have fallen off the face of the earth. But!! I have come with something interesting I would like to share with you.

If you read my previous post, you learned a bit about the VNS and what it does. "But," You may ask, "What does it sound like when it goes off?" Well, I am going to show you!

It's definitely frustrating at times for me and very inconvenient. Like I mentioned in the video, I'll be singing a song and my VNS will go off. It sounds like I am dying when it does and it's rather embarrassing.

Overall, it is worth it to me. If I have to go through a voice change every few minutes, then that's that. I find it fascinating that I have a little device inside me. One of my brother-in-laws says I sound like a robot sometimes, and he calls me robo-girl or something like that. When I touch where it is, it feels hard. I have tried getting my dad to touch it, but he goes, "EEEEE!!" My oldest sister loves to touch it, though, so they are very different people.

Not to be cheesy, but I am so grateful I am able to have the VNS. I didn't realize how hard it is for some people to get it. Whether it be your insurance company refusing to pay for it, or not having insurance, it's difficult for some people.

Vagal Nerve Stimulator (VNS)

Sorry I fell off the face of the Earth....AGAIN! BUT, I am back.

I'd like to talk about a topic that most people are not familiar with. It is called the Vagal Nerve Stimulator or the VNS. The Vagal Nerve Stimulator is a device that is implanted into a person's chest. It looks much like a pacemaker and in a way, serves a similar function. The VNS is an option for some patients with Epilepsy who have not responded well to medications and have Simple Partial seizures. (Also used with treating Bi-Polar depression) The device is implanted on the left side of your chest, and a lead (wire) is connected to it, bringing it up and wrapping around the Vagus Nerve. To the right is a diagram of what it looks like inside the body.

What the Vagal Nerve Stimulator does is, it sends pulses of electricity up the Vagus Nerve into the brain. When you get the generator first turned on a week or so after surgery, it is programmed to go off every five minutes for thirty seconds. By that I mean, every five minutes, the VNS sends out pulses of electricity up the Vagus Nerve, and this lasts for thirty seconds.

Along with the VNS comes the VNS Magnet. The magnet is extremely strong. It is designed to (when the user swipes it) send an extra boost of stimulation to the Vagal Nerve Stimulator. Though the VNS goes off on its own every five minutes, if you were to feel a seizure coming on and were able to grab the magnet, or the person you were with noticed it, you/they could swipe it and get that extra boost of stimulation. When the magnet is swiped, the stimulation goes off for a full minute instead of thirty seconds.

The Vagal Nerve Stimulator is originally set for .25 volts of stimulation. That means it is not very strong. The VNS magnet is always set for .25 higher than the VNS itself. As time goes on, your body adjusts to it, and your neurologist can turn it up or down, depending on how you feel and what is best for you. When adjusting the voltage, the neurologist uses this contraption (on the right) to do so. They connect it to an iPad or some sort of screen, and you hold this up to where the VNS is inside your body. A few seconds later, all of your information is pulled up onto the screen! The neurologist then talks about what voltage or frequency it should be on, and whether you are comfortable with the settings.

I never wanted to get the VNS. The thought of something being implanted inside me was terrifying. I did not want to be changed at all. My neurologist had brought it up as an option one time, but I refused. One day, my mom and I were taking a walk, and the topic came up. "Don't you want to be seizure free? Don't you want to see if this works?" My mom asked, as she tried to comfort me. I brushed it off, still set on my decision. One day, unlike any other, I had a few seizures, and something popped into my head. "I'm tired of having seizures! It is so exhausting to worry about them and be so embarrassed!" I told my mom what I was thinking, and I told her that I wanted to get the VNS. At my next neurologist appointment, I told my neurologist about my decision. It was simple after that. She gave me a pamplet and a DVD about the VNS, (I never watched it) and we just had to decide when I wanted to have the surgery. We thought that it might be best to wait until after my parents would get back from Cambodia that February of 2015. "No. I am not going to wait that long. I want to go to college with it!" Those were my thoughts. We met with the neurosurgeon that would be performing the operation, and scheduled it to be a month later, right after my 19th birthday.

The surgery date came quicker than I thought. I researched the VNS everyday, watching what little YouTube videos they had on the VNS. I was so excited and wanted it so badly, but I was also terrified. The night before the surgery, I slept over at my sister's house. I wasn't allowed to have any food or water after a certain time, and was only allowed to take one of my medications. I was so grateful that the only one I was allowed to take was the one I normally took at that time. The hospital was only 30 minutes away, but it felt like much longer. My sister and I thought the surgery would be in the Outpatient Center, so we checked in. We were wrong, and had to walk a ways to get to the right building. As we sat down after checking in, all sorts of thoughts were racing through my head. "WILL IT HURT? WILL I WAKE UP DURING THE SURGERY?" So many thoughts and horrors went through my mind. My sister tried distracting me by playing this game, "Mr. Crab". That didn't work very well. (It's a really fun game, as I now know) After getting into my room, they took my vitals and all that. I was scared to get the I.V., because I hate needles. I wasn't too scared, because I don't mind as much when things are being put into my body, as much as when they are taking fluids out. But this needle hurt! It was big because it was needed in case they needed to give me blood or other important things during the surgery. The nurse tried to distract me, but that never works. I spent about three hours in that room waiting to be taken to the operating room. The nurse went to lunch and when she came back said that it would be another 45 minute wait. Ten seconds later, a man came in telling me he would be taking me to the OR. My sister was able to go with me to that floor, but couldn't follow me any more. I lay on that bed in the hall for what seemed like forever. It was probably about 45 minutes. Nurses and doctors came in and out of the OR, sometimes waving at me and saying hi. I was shaking from being so scared. A woman came out with a bunch of bags full of what looked like bloody towels. That made me sick to look at. At last, the anesthesiologist came out to get my paperwork, and talk to me. He joked around with me, and I asked him, "Will it hurt?" He said, "Well yes, it is surgery." That makes sense. Getting cut open hurts. A few minutes later, I was wheeled into the operating room. It looked like a party in there. Everyone was talking and laughing, having a good time, and there I was, scared out of my wits. They lifted me up and put me on the table. They got these white gauze pads, (I don't know the name) and put them all around me. I expected them to tell me when they were going to be putting the anesthesia in the I.V., but right then I started closing my eyes. For some reason, I tried to keep them open, but that did not work.

I woke up what seemed like a second later in the recovery room. The nurses noticed I was awake, and asked me how I was. It was a bit blurry, but from what I can remember, they asked me on a scale of 1-10, what my pain level was. I was in pain, but I was so disoriented that I was not sure what number to pick. I sat up right then and threw up. As I lay back down, I heard the nurses talking about my sister, and how she wasn't answering her phone. When I heard that, my stomach got even more queezy, and I got nervous. Even though my sister wasn't answering her phone, (according to them) I was wheeled back to my room. My sister met us there.

Before my surgery, I was so excited that it was a same-day surgery, and that I would be able to go home shortly after. Let me tell you, when I was back in that room after the surgery, I did not want to leave that hospital. I was in so much pain, and I could barely move. Unfortunately, I had to leave.

Those first few days of recovery were awful. I could physically not lie back in bed. I had to have three or four pillows propped up, but when I would lie back just a teeny bit, I couldn't breathe. I had huge bandages on my incisions, which I thought was the cause of my not being able to breathe. Although, when I took those off, and I was left with the small tape on the incisions, it felt the same.

This is the longest post I have written, and for that I am sorry. I hope you all enjoyed!

Exercising With Epilepsy

Sorry I sorta fell off the face of the earth, but I am back. I've been quite a busy Sara.

Recently I got this thing called a Fitbit, which I have come to love. It motivates me to exercise, which is something I have needed for a long time. It keeps track of a lot of things, depending on the Fitbit you choose to get. I got the Fitbit Charge which has a lot of options. For me, it keeps track of my steps, calories burned, staircases climbed, active minutes, sleep and miles. There are other things it is able to keep track of such as: food, water, etc. The Fitbit is fun because you can "compete" with family members and friends. There are challenges you can complete, which is a great motivation.

When I first got the Fitbit, it was extremely hard for me. A trigger for seizures is exercise, which has limited it for me. For the first week or so, I would have a few seizures every time I exercised, which was not fun. It made me not want to exercise anymore, and brought out more insecurities than I already had about my epilepsy. As I continued to exercise, I had less seizures. My body was getting used to it, which has been very helpful.

Today was a good day. I was a bit anxious around noon, and I thought I would go walk around the block to get my energy out. I walked around the block, and decided to walk around some more, being that I needed more steps on my Fitbit to meet my 10,000 steps a day goal. I decided to walk more, and ended up going from 3,000 steps to 10,000. It felt amazing to meet my goal and be able to think about life.

I rewarded myself by taking a nap when I got home and eating chocolate.

It's nice being able to forget I have epilepsy sometimes.

20th Birthday/Simple Partial Seizures

Today is a joyous day. Okay, well it is joyous because it is my 20th birthday. Yay! I celebrated it with my sister and my brother-in-law at Lagoon. Lagoon is a rollarcoaster park type thing. I had such a great time with them, but about halfway through, we were standing in line to take the Sky Lift across the park, and I felt an aura. I knew it was a seizure coming on, but I was hoping I would be able to cover it up, making it less noticeable. That did not happen.

You see, there is a difference between how I feel in a seizure, and what it looks like. People who know I have seizures often tell me that if they didn't know I had seizures, they would never had known I had one. See, it is hard for me to believe because when I have them, they feel noticeable. Let me tell you about Simple Partial seizures.

Simple Partial seizures are where only a small portion of the brain's neurons are freaking out, therefore, causing a seizure. Unlike Grand Mal seizures, they do not all look the same for everyone. For me, I clench my left fist, opening and closing it. I stare off into space, my eyes glazed. Often times my eye starts twitching. That might not seem like a big deal, but it is to the person having the seizure. Other people with Simple Partial seizures may have it different. There are various movements someone could make.

So as I was saying, I was standing in line with my sister and her husband, and I started having a Simple Partial seizure. My sister asked me if I was okay, not realizing I was having a seizure. My brother-in-law moved his hand back and forth in front of my face, asking if I was okay. I told them it was a seizure, and that it was okay. The thing is, even though I was perfectly fine, a persons reaction is to ask a bunch of times if I am okay. It used to bother me because people would act like I had no idea how I felt, and that I really wasn't okay. I no longer get upset over it because no matter what, people are going to say that. We got onto the Sky Lift, and my cluster of seizures began. With me, I don't just have one seizure. I have a cluster, which means about four or five. They hurt my head after a while, and I get really nauseated. It didn't help that I had just drank tons of soda, and had air in my stomach. I felt so stupid because I kept having them next to my brother-in-law, and it would get awkward because of the silence. He tried to keep the conversation going, but what is someone supposed to say when someone is having a seizure? After we got off at the other side of the park, I told my sister about the seizures I had had. She was kind and asked if I wanted to wait to go on rides, but being me, I didn't want to wait. It was okay.

Shortly after all of that, I was walking to a ride, and I realized that I had my VNS magnet with me! "Are you kidding me? I have my magnet? Why didn't I use it?" I asked myself outloud. I asked my sister if she wanted to swipe my magnet for me. She did, and she thought it was a little weird.

I was fine after the magnet was swiped. Later, my brother-in-law and I were standing in line to ride, "Cannibal", this amazing, crazy, scary ride, and I started having more seizures. He was buying stuff to eat, and so I was standing there by myself, trying to not be noticed by the people around me. These young boys kept turning to look at me. I never can get used to people staring. It makes me want to hide in a shell. When I have my seizures, I have to think about how it looks to the people around me, and I have to accomodate my actions. That doesn't make a whole lot of sense, but let me try to explain more. When I have seizures, I think about what people may think as they look at me. I tell myself to act natural, and I try to stand still and focus my eyes ahead, so it is not noticeable. It is exhausting trying to do that. It's hard to do so because it doesn't always work. This is not one of those things that I can control.

My birthday was so much fun. I loved being with my sister and her husband because they are amazing and so understanding. It's a good thing I was with family for that, because only a certain number of people know how to react to my seizures.

Epilepsy is a sensitive topic. It really embarrasses me, and whenever I tell people I am embarrassed, they don't listen to me. They just tell me to "not be". Gee, thanks. I will take your advice and put my feelings aside.

Overall, I had an amazing birthday!!

Grand Mal Seizures

After being diagnosed with Epilepsy, I wasn't sure how to think or feel. I told my family that I was diagnosed, and they were concerned.

At my Neurologist appointment, I was put on a medication called "Keppra". I hoped that the medication would keep me from having any more seizures. It did, at least for a while. Six months later, I had another seizure.

I have had many Grand Mal seizures in my lifetime. They have occured at various places. I have had quite a few on the couch in my living room, one at my friend's house at a sleepover, one at my neighbor's house on their porch and one downstairs when I was watching a movie, all alone.

Let me tell you about those.

The Grand Mal seizures I have had on the couch were terrifying, but I was safe, being that it was a large couch, and there was always someone there with me. Though they were all at different times, they all felt the same. I knew that one was coming on because of the "aura" I felt (an aura is a strange feeling that comes before having usually any type of seizure). The aura came, and as I was laying on the couch, I twisted my body to the left and started to seize. Now. As soon as it started, that "out of body feeling" came, and it felt as if I was watching myself have that seizure. As if I was floating above my body. The echoing occured as usual. I heard my family surround me, saying things like, "Sara is having a seizure!!" It echoed through my mind over and over. I heard myself grunting and making noises. The seizures seemed like they did not last that long, but they last about 3-4 minutes. As I was coming out of the seizure, I couldn't talk. This is what happens when someone comes out of one. I couldn't talk for about five minutes. I heard myself breathing heavily out of my nose. My family tried to get me to say something, but my brain simply could not process the words. Something interesting with me is that unlike most people who have seizures, I can hear everything that is going on during the seizure. I know exactly what is going on and I hate that. I hate being able to know that I am in a seizure. It is the most horrifying feeling.

I have had a few Grand Mal seizures on my couch. Another one was at my friend's house while I was sleeping over there. I remember falling asleep to a movie while I was lying on the couch and I woke up to her parents and my parents staring at me. I was confused. My friend is Chinese, and they often drink hot water, as it tastes good, and it helps you feel better. Her mom tried to give me some, though I could not hold it because I just came out of the seizure. My parents wanted to take me home, but I was sad that I had to leave the sleepover early. I was scared to ever go back to my friend's house, because I knew she would be freaked out. The next time I went over there, her brother made a joke about me seizing. My friend said for him to shut up.

Another time was at my neighbor's house when we were having dinner there. I was sitting at a table, and I looked at my sister as I had that aura. I fell out of my chair, and I woke up to my Dad scratching my arm, because I love that. My parents, my sister and I were sitting together, and I remember thinking that we were in the front yard, and I was confused since the porch is in the backyard.

The last time is when I was downstairs on the ground, watching a movie by myself. I remember looking over, and my cats were sitting next to me. I went into the seizure, and when I came out of it, I couldn't talk, so I had to wait while I was terrified. Finally I was able to grunt, and I was so scared because my Mom was upstairs and I knew she wouldn't be able to hear me. Somehow she did, and she came down confused. Soon, she realized what had happened.

Seizures are the scariest thing to go through, and it is so hard to explain how they feel.

Number Two

A couple months after I had my first seizure, I was in my computer class at school. I was doing the usual stuff; assignments, quizzes, all that jazz. It was a few minutes before the bell rang for the next class, and my friend, who was sitting next to me, turned. "Hey Sara. What time do you want to work on our science project today?" She asked. I opened my mouth to answer her question, when that strange feeling I had felt during my first seizure, and my "concussion", came over me. I looked at the clock. "2:15" I said in a trance. My friend looked at the clock as well, confused. "Sara. That is the time right now." The next thing I knew, I was on the ground. The echoing I had heard in my first seizure started again. "Mr. Allred! Sara's having a seizure!" She shouted. That sentence echoed in my ears over and over again.

I opened my eyes, and I was in a strange room. "Where am I?" I thought. Standing to the left of me was my Mom. To the right, my computer teacher, Mr. Allred. They had worried looks on their faces. I remember feeling like a freak. Like I was some foreign object that they didn't know anything about. After thinking about it, I realized I was in the nurses office. I had never been in there before, only seen it in passing. (Later, my Mom told me that she had been at work when my school called her. She knew something was wrong. She could sense it)

We made an appointment with a Neurologist. After a couple appointments, he told me that technically, if you have more than one seizure, you have Epilepsy. I broke down inside. I waited til after the appointment, when we were walking to the car, to let it out. I sat in the car, crying. My Mom felt so bad. She didn't know what she could do to make it better, when in all reality, there was nothing she could do to fix it. "Sara, is there anything you would like to get at the mall? Something that might make you feel a little better?" She asked kindly. At the time, Toms shoes were really popular. I really wanted some. Normally, my Mom wouldn't buy me them, because they aren't the cheapest. We went to the mall, and they didn't have them. Instead, she bought me Vans. She bought me a couple of other things as well. I thank my Mom for making me feel better that day.

Seeing It For The First Time

Now. Let me tell you about a time I was at a camp. I was about 13, so I hadn't had my first seizure yet. All of us were singing songs together, when I saw a bunch of people turning around. They were clearly looking at something, so my Mom and I looked as well (She was at the camp with me). I saw a girl lying in someones lap, foam coming out of her mouth, seizing. This was the first encounter I had had with seizures. I had heard of them before, but the only thing I remembered was about a boy who had been watching TV for three hours straight, and had a seizure.

After this incident, I constantly bugged my Mom about that whole thing. I was so scared that I would have a seizure just because I saw someone else have one. "Sara, you are not going to have a seizure just because you saw someone else have one," Was her usual response. Though I knew she was probably right, I was still freaked out.

A few months later in November, I had my first seizure.

My Mom felt bad for a while, knowing she had told me seizures were not contagious, and yet I still had one. It was completely coincidental. Everyone knows witnessing a seizure does not make you have one. Seizures are not like colds. Being around them doesn't make us have one.


I want to tell you about a time right after that camp. I was at home, watching a movie in my Dad's office downstairs. I fell asleep and woke up on the ground. I felt like I was in a daze and wandered upstairs. My sister and her friend were playing a card game and they realized something was wrong with me. My parents were not home, so my sister and her friend tried to distract me by getting me to play the card game with them. When I tried to play, I couldn't remember how. "What do you mean you don't know how?" My sister asked. "You play this game all the time."

Since my parents weren't home, my sister called my other sister, Annie, and told her that I was acting weird. Annie came over to the house, and took me to the doctor. "She got a concussion. She must have slipped from the chair when she fell asleep." The doctor said. That is what we thought happened.

That was the version of the story we thought was true. That doesn't make much sense, so let me just explain.

That day, I decided to watch a movie down in my Dad's office. I woke up to find myself on the ground. I was extremely confused and I had the strangest feeling. I felt as if I was watching another person's life, as if I wasn't myself. I felt like I was dreaming. It was terrifying. I remember making my way out of the office, through the rumpus room; I was looking around, so confused. "Who's body am I in? What is happening? Am I even alive?" Those questions were going through my mind. I walked up the stairs to find my sister and her friend at the top, playing a card game. They must have asked me questions, but I don't remember them. I remember them telling me that my parents weren't home, and they wanted me to play the card game with them to distract me. I looked at the cards as they laid them out. "I don't know how to play it." I said. "What do you mean you don't know how to play it? You play it all the time." My sister said, as she looked at her friend anxiously.

My sister, Annie, took me to the doctor and he told me that it was just a concussion, and that I must have slipped out of the chair when I fell asleep.

A while later, my parents and I were thinking about it, and we realized that that was possibly a seizure. Some of the symptoms were the same.

The Beginning

Hello again!

You might be wondering how this all started. My seizures, I mean. I summarized the beginning of it all a little bit in my last post, but let me give you the details.

As I woke up that morning in November of 2009, the thought came to me that I should get ready in the guest bathroom upstairs, instead of the bathroom right next to my room. That didn't make sense, but I did it anyways. As I was brushing my hair, the next thing I remember is laying on the ground, the world echoing around me. The banging of my head on the cupboards, echoing. It felt like a dream. I heard my parents run in. "Oh my gosh," They said together. I felt their hands underneath my head, holding it to keep it from the continuous banging (They told me later that my lips had turned blue).

The next thing I remember is my Mom and I sitting on the couch in our front room, looking out the window. "Mom, are the neighbors okay??" I asked as an ambulance pulled up in front of our house. "Sara, that ambulance is for you." I sat there, confused. I had no memory of what had just happened. (Later, my mom told me the paramedics came in to take my vitals and all of that jazz).

Yet again, time skipped ahead. My Dad was helping me into the back seat of our car. "Is everything okay?" Our neighbor asked as he walked up our driveway. I don't remember much, just that my neighbor told us if we needed any help, to let him know. My mind was foggy and I continued to feel as if I was dreaming. (Sometime after all of that, my mom told me we did not ride in the ambulance to the hospital because it cost $1,000, and we live about five minutes away).

We pulled up to the E.R. My Dad let me and my Mom out of the car at the front door, so that we could go in, while he would find a parking spot. The world was blurry, as I sat watching my Mom fill out paperwork. Soon I was on a hospital bed, being wheeled around by doctors. I guess I got my vitals taken; I'm not sure. Laying on the bed, I was in a room, waiting for the doctor to come back in. All I remember is my Dad taking a picture of me. (Enclosed in the first post).

"It was most likely a one time thing," The doctor said. "A fair amount of people have a seizure in their lifetime. Now, if you have another one, go to a Neurologist." Talking to my parents after, I was quite scared. Just kidding. I was freaking out!! "Sara, I don't think you will have another seizure." My Mom reassured me. "Okay." I replied.

Welcome!

Hi everyone! Thanks for coming to my blog! I hope to be able to share and inform you about some things that I feel like I should share, and maybe would be interesting to all of you.

A little summary:

Imagine 14 year old Sara. Aww...so cute, right? Yeah..... sort-of. Insecurity, sadness, blah blah blah. There came a time at the beginning of little Sara's 8th grade year that her brain decided to have a seizure. Yep. A seizure. There little Sara was, getting ready for school, trying to look amazing, when she fell down in the bathroom, and seized, hitting her head on the cupboards.

That is a bit of what I will be talking about in this blog.