Gotta Love Epilepsy

Long time no...write? I've been busy, you could say. Okay, not really. Life has been hard for the past two months?

For starters, depression and anxiety are not my friends. They have gotten bad over the past months and it has got to the point where it is hard for me to even leave my apartment. So, that has been difficult. When I go back to the United States, I'm hoping to change my anti-depression medication from Zoloft to something that actually works. It worked for a while, but when I got to China, it basically stopped working. Now, I am not sure if that is because of the stress that I have had here, but that should not matter. The medication should help no matter what situation I am in.

Epilepsy. Same same. Well, I have definitely had more seizures while in China than usual. The norm for my seizures is having one cluster of simple-partials a month, around "that time". However, I have been confused as to why I have had more, at different times. I have figured out why. Some of you may know that one of the many possible triggers for seizures is stress and lack of sleep. It's no question that I have had both of those. In general, I get stressed out fairly easily. Being in China, though I love it, has given me some stressors. That includes being away from my life as I know it. It has been on and off, but in general, I have missed quite a bit. One of those things is the piano. It has been almost four months since I have played those keys and I am missing it a lot.

Anyways, my seizures are the same. Same look, same type. They are just more frequent. It's been frustrating. When I have seizures, I get bad headaches. They last for hours and it isn't particularly enjoyable. It's hard enough to have clusters once a month, but now that I've had seizures more than usual, it seems like I always have a headache. I have been sleeping a lot because of it, and it feels like I never get enough sleep. When I wake up and it is eleven or twelve, I feel exhausted. It feels like I have not slept in days. That is another thing that people with epilepsy have to deal with. 8-9 hours of sleep is a good amount for adults. However, people with epilepsy may sleep that long, but it feels like 4-5 hours of sleep. So, you can imagine how that feels.

I have a week left here in China. The 15th is going to be a very long day, with the lovely time change. Figuring out my medication with the time change has been extremely difficult. I think I have finally figured out how to go about it, which requires me having to skip a dose. Hooray!

China With Depression/Anxiety

Living in China 12 years ago, I expected this time to be a similar experience, though I am much older. I have seen things in a whole new perspective, which has been interesting. Memories flood back to me as I travel to the various places I have long since been to. My love for China has grown tremendously, if even possible. However, despite all this, it hasn't been as easy as I thought it would be.

On the flight from Seattle to Shanghai, I got sick towards the end. I had been napping and I woke up sick to my stomach. The rest of that night was awful. I slept on some chairs as we were waiting for our flight from Shanghai to Nanjing. My stomach wasn't happy. Luckily, I was able to keep what was left in my stomach down. However, there was a bus that took us from the Shanghai airport to the plane, and let me tell you, it was not the smoothest of rides. On the plane, I put my head in my mom's lap, which enabled me to sleep for the hour long trip.

As we got into the van that would take me and my parents to the hotel, I got upset. However, this time my stomach was not the culprit. 'Twas my mind. My anxiety decided to show its ugly face and give me a present: an anxiety attack! Hooray! That hour long drive from the Nanjing airport to our hotel seemed like an eternity. I don't know if any of you are familiar with it, but anxiety attacks are not the most lovely of things. My breathing got faster, and I couldn't get enough air. I had to pretend nothing was wrong; no suspicion. As it continued, I got out my phone, opened a new text message and typed a quick note to my mom. Something along the lines of, "I am having an anxiety attack. I can't breathe." I passed the phone to my mom. However, she told me she couldn't read it because she didn't have her glasses on. So, that was the end of that. I had no choice but to wait until we got to our hotel to let my parents know what happened. When we finally arrived, I did just that. They apologized and we went inside to check in. My mom and I stood at the desk while my dad spoke to the desk man in Chinese. After a while of waiting, we were able to make it to our room, unpack a little, and wait for sleep to take us away. No need to worry about jet lag; we were exhausted.

For the next week, I was okay. I had a little bit of culture shock, but not much. Just me not wanting to go anywhere. I wanted to stay in the hotel room and sleep and that is mostly what I did. Meanwhile, my parents were apartment hunting. I didn't care where we lived; I was too tired. I looked at a couple pictures my mom took of a possible place to live. As the week passed, my dad got frustrated that we had not found a place to live in within our budget. I, too, was a little upset. Our hotel was lovely, but I got tired of staying there. Our real estate agent was funny, though. He and another guy would take my parents apartment hunting on the back of their motos (motor scooters). For the last few times, I was also able to come as we switched from moto to moto. There were about four people in total who would drive us around. The first time I got on the back of one, we drove about three hundred feet to the next traffic light and a cop stopped us. He told us the guy couldn't have another person on the bike. It was ridiculous because everyone in the entire city has more than one person on their motos! Sometimes three! My driver tried to bribe the policeman with money. Something else I bet the policeman was thinking, was that it was strange to have a man with a blond haired young foreign girl riding on the black of his bike, down the street. As a result, I had to wait for another guy to come pick me up, once the policeman was gone. That was a glorious night.

Soon after, we were able to FINALLY get an apartment. It had been one that my parents had looked at before, but the price they were asking for was too high. The people decided to lower it, to my parents excitement. It was nice to finally have a place to live in. It took me about a week to get a bed. I had to use a hard, thin mattress type thing for a couple days, on a bed frame. The "mattress" was too big for the bed frame, leaving me with only half the bed to sleep on, unless I wanted to fall off. Our real estate agent was finding mattresses from who knows where, but they were all too big! Eventually he found one, who knows where. I didn't care; I finally had a bed! Chinese mattresses are known for being rock hard, but this mattress is pretty darn soft. I quite enjoy it.

All of the students, including me and my mom, started classes around that time. It was a terrifying time for me. I was anxious and didn't want to go. I had the thought in my head that I would be the worst one in the class and not know any Chinese compared to everyone else. However, everything was just fine. The first day, my mom and I were trying to figure out which class we wanted to be in. We started out in a beginner class, which was far too easy for us. I have taken Chinese before. It was years ago, an intensive Chinese language  camp, two years in a row. We got up, and decided to try a different class. I will tell you. That was NOT easy. The next day, we decided to go back to the beginner class. It has been the perfect review for me. In the past two years, my  mom has taken two Chinese classes, so she is enjoying it. 

I've been traveling all over the place. I've been to Beijing, Xi'an, and all the places in those cities. The Summer Palace, The Forbidden City, The Great Wall, so many. I have enjoyed every minute of it, though I've had some hard times. I've had some breakdowns from stress and anxiety. I've found myself hating everything: China, people, food, etc. That is a part of culture shock, I guess.

Lately I have been sick. My immune system is not very good, so I assumed it was just something small, and would leave soon after. However, that is not what happened. The first couple days I threw up, due to an upset stomach. The next week was filled with an upset stomach and many trips to the bathroom. I could eat hardly anything because my stomach would get upset and I would end up in the bathroom. Because of that, I was quite weak, and I was more tired than usual. I had to remember to drink a lot and try to eat without running to the bathroom ten minutes later. Fortunately, for some reason, my stomach would tolerate peanut butter and banana sandwiches. I didn't complain, though. I would find myself eating two or three a day. What was frustrating was that I would be unbelievably hungry and I wasn't able to eat anything but that. Thanks to a friend, we were finally able to make something that didn't hurt my stomach. It was over-cooked rice, mashed up bananas, vanilla and raisins. It is quite delicious. My stomach is still sensitive, but it is much better.

Lately I have been really depressed and my anxiety is extremely high. Some of you may have depression and know what I am talking about. Depression is something that doesn't just "go away", nor anxiety. I've had experiences when I am having a hard time  and people ask me what is wrong. I tell them I'm a little anxious and their answer is, "Well don't be". No really? I didn't know that! Okay. I'm not trying to be rude, but that is really frustrating when people do that. Same goes for depression. Depression isn't just "being sad". There are levels. Some people have a little bit. Some have it high enough that it can be dangerous. It's not something people should make fun of. You hear people say, "Ugh they are acting really bipolar". That gets to me, because I know people who suffer from  bipolar. So! A little bit of what depression feels like is: feeling alone. It's as if a dark cloud has taken a spot above your head, raining down upon you. It gives you thoughts of pain. Mental pain. It feels like nothing will get better. "Nobody likes me", is an example of something you could think of. "I'm  a pain in the rear end". So, I've been depressed. It's something I deal with, but it's showing itself quite a bit right now. It's been hard for me to get out of bed every morning. On days off, I tend to stay in bed till early afternoon. It's been hard for me to get involved, and eat the food here. I love Chinese food, but lately it hasn't been appetizing to me. I have found myself going to the Times Market, which is a store meant for people like me, who love American food. It's not cheap because they have to ship it all to China, but some of it is worth it. I buy chips and salsa there. Just last night I bought Andes mints, jalapeño baked chips and Dove white chocolate. It was amazing. I also have a bunch of the variety pack of miniature chocolate bars. You know, like Mr. Goodbars, Krackel, Hershey's, Hershey's dark chocolate, and I think that's it. It has been nice to have.

Anyways, I'm feeling better health wise. I am trying to get better mentally, but it's been difficult. I've gotten out of the apartment for class which has been good   because I have some good friends in my classes. My seizures haven't arrived yet. Gotta wait a while. I've noticed that my VNS hasn't been bothering me as much. Actually, not at all. I hardly notice it anymore. When it goes off while I am talking, I can barely hear any voice change. It's made me happy.

Thanks for reading this LONG post.

Forever And A Day.

Helloooooooo everybody! It has been so long and for that I am sorry. A lot has happened since July, so I will try to remember everything.

I was finally able to get in to see my neurologist. We talked about how I had been having an increase in seizures and wasn't sure why. It has been clear that my cluster of seizures comes around the same time every month, which is right before my menstrual cycle. It lasts about a day. I have discussed that issue a couple times with my neurologist and each time she says there isn't much you can do. Some women have tried different things, which never work. This last appointment she suggested something new: get a prescription for 100mg tablets of Lamictal. I would take them the day before I started my period and the rest of that week. Of course, I had to have my levels checked first, being that it is dangerous to have my Lamictal levels too high and could cause liver damage. So far, I have used the 100mg pills but I haven't thought much about it.

On August 25th, I left the country and traveled to China. It's a study abroad for my dad's work and my mom and I followed along to take some Chinese classes at the university here. It is my second time here in China, the first being in 2004. I have a whole new perspective on things because I am older now. Also, it has been great being able to get to know the students that are here for study abroad. I'm going to be here until December, so I will have been here for four months.

Okay. I consider China to be my second home. I love everything about it. The people, the language, the culture. However, culture shock has hit me hard on and off. Sometimes I wake up hating everything about China. My day is followed by me complaining about everything and hating everyone. Other times I will be just fine and half way through the day something sparks. For me, when culture shock hits I go into a deep depression, never wanting to leave my room, let alone the apartment. It usually lasts a day and goes away.

A few weeks ago I traveled to Beijing with everyone and my monthly cluster of seizures graced me with its presence. I had to miss some things and stay at the hotel. When they seemed to have stopped, I decided to walk to the store with a friend. On the way there and back I had seizures non-stop. Luckily, I was able to hide them from my friend. She knew I had seizures, but I much preferred to not show them if I could help it. Unfortunately, on the way back to the hotel, she noticed something was wrong. I told her a second after the seizures stopped, that I was sorry. I don't know why I apologized, but she said it was just fine.

My VNS has been lovely. It isn't as noticeable for me as before. Riding my bike is when I do notice it. It will sometimes show itself causing my breathing to get heavier, but that rarely happens. It could be because I am getting in shape. Who knows?

It's been hard for me to get on my blog because of culture shock and also my classes. However. I will try to write once a week at least.

Why??

So I keep telling you all that I will write on here more often. Unfortunately, that is not what has been happening.

In my previous post, I wrote about how I have been feeling more confident and how my epilepsy doesn't bother me as much as it used to. Well, let's just say that I don't exactly feel that way anymore. Things have not been the easiest for me, lately.

Where to begin... well for starters, I was supposed to go in for an appointment with my neurologist last month. It was just a routine checkup with my VNS and everything. I was not feeling well that morning, so I called and asked if I could cancel it. So, that was taken care of. However, I realized shortly after I got off the phone, that I should suck it up and go to the appointment anyways. I called them back five minutes later and they told me that someone else had already taken my appointment! I know it was my fault, but it still infuriated me. They told me they didn't have any openings until September, otherwise they could put me on the wait list, in case someone cancelled their appointment. That was my only choice being that I will be out of the country from August to December. So far, I have not gotten any phone calls from them.

Over the past month, I've noticed an increase in my seizures. Normally, I have my small cluster of Simple-Partial seizures while I am on my period once a month and it has been that way for a long time now. Like I said though, there has been an increase of seizures. Instead of getting them once a month on my period, I have been getting them about every two weeks. That is how it was before I got my VNS. Last night as I was trying to fall asleep, I felt a seizure coming. I was a bit confused, because I don't start my period for another week. However, this was not one of my usual Simple-Partial seizures, where I simply stare off into space. But, it wasn't quite a Complex-Partial either, which is what I used to have years ago, where I would twist my body and freeze. It was in-between and it freaked me out. My head started killing me and when I finally fell asleep, it didn't last for long. I woke up 15+ times last night. Today I have been slugging around, just in my own world. I really need to carry my VNS magnet with me everywhere I go. Last night, I should have used it during those seizures, but I didn't think about it.

I am so frustrated with everything. I don't understand what is happening and why my seizures have increased. I haven't changed anything. Lately, I have been attempting to eat healthier. In the past few days, I have made smoothies and I love them. Today I made one that had: strawberries, blueberries, peaches, an apricot, spinach, and almond milk. I know what some of you are thinking, "Spinach in a smoothie? Yuck." Yeah, that is what I used to think. But the thing is, you don't taste the spinach. And, it is extremely healthy for you. Try it! I think you would love it.

Pondering

Lately I have been thinking about my epilepsy and life in general. I've had epilepsy for almost seven years, but it seems like a lifetime. In that time, I have grown and changed a lot and it's been for the better. The lessons I have learned are not all big lessons, either. A lot of them are small.

The thing is, I was so confident before I was diagnosed with epilepsy. As confident as an 8th grader can be, anyways. I loved my friends, school was great; life was good! It's funny how one thing can change your life completely, though. One second you are perfectly healthy, the next second you are having seizures. One day. Seven words from the neurologist. "Two or more seizures is technically epilepsy." Seven words that changed my life. That one seizure in 8th grade was not just a one time thing, as my family and I had hoped. It was the beginning of a new chapter. And really, a new me.

After being diagnosed with epilepsy, I hid it. I didn't tell anyone that I didn't have to. My family knew and that was it. None of my friends at school knew, but I did tell my best friend at the time. I didn't go into details. I told her I had seizures. That was it. And I was not about to tell anyone else I had epilepsy. I'm a freak! Those words were always in my mind.

Rarely was there a time I didn't have a crush on someone. Though at that time, I hoped and prayed that I wouldn't have a seizure in front of them. The summer between 8th and 9th grade (high school) I met quite a few boys that I began to like. It was scary to me because I was convinced I was a freak and I mean I was, right? I had seizures. That's not normal, right?

When I started high school, I got a new group of friends, which meant I probably should have told them I had seizures. Yeah, the only problem was.........that was never going to happen on my watch. I was constantly trying to convince myself that I would be fine and that I didn't need to tell anyone about my epilepsy. Looking back, I am glad I didn't tell them because I broke down every time I had a seizure and they would just stare at me. I did tell one of my friends and they did exactly what I thought they would. They looked at me and said, "okay". Though, when I did have a seizure in front of them, my medication was making sure I only had Complex Partials. My "friend" looked at me like I was an alien. She walked away while I was still in the seizure.

For the first year of being diagnosed with epilepsy, I cried everytime I had a seizure in front of someone. It was mostly hidden, but it happened. It stopped after about a year and though I would still get upset and embarrassed BEYOND BELIEF, I didn't cry. When I have seizures in front of people now, I get embarrassed, but I move on fairly quickly.

Something I have learned over the years is that life doesn't always go the way you want it to. Life can change in the blink of an eye. Never would I have thought I would start having seizures. I didn't think that I would wake up the next morning and have one in the bathroom. No matter how many times I get angry about it. No matter how many times I complain. It's not going to go away. I have to take what I have and go along with it. Yes, I thought my life would be normal. I thought I would be like everyone else, and get my license at 16 years old. I thought I would be able to get through a year of college without having crippling side effects that made me not be able to do what I was there to do: go to class, let alone, take more than two classes.

No matter what you have. If it is something physical or mental. It doesn't matter what it is. Our trials and hardships are equal. Recently, I've felt like I have been complaining too much about my condition, when there are other people out there who have even worse conditions. There are people that can't walk, talk, or do anything by themselves. However, I've learned that it doesn't make it any less of a hardship for me. It is still real. It's as real as someone elses disability. I have seizures. I can't do anything to stop them. I'm on three seizure medications and two anxiety and insomnia medications. It isn't my ideal choice, but it's what I have got to deal with.

No doubt I have learned a lot of things from my journey with epilepsy so far. However, a big thing I have learned is to not be afraid. I cannot even begin to explain how scary it is to have a seizure. It doesn't matter what size or type. Complex Partial, Simple Partial, Absense, Grand Mal; it's the same. All terrifying beyond explaination. I don't have a choice, though. I have my medications which control my seizures enough to where I only have them once a month in a cluster. I hate it, but it's what I have to deal with, and it's my life.

I have noticed that I've gotten a lot more confident lately. I am thinking it is because I am learning that I am not inferior to anyone else. I have my trials and hardships. I have epilepsy, but that doesn't make me a freak. I've gotten to the point where I can tell people I have epilepsy without hesitation. I don't need to worry about what other people say and think. Really. Who cares what others think? They can call you whatever they want. Just....

Please everyone. Don't let the world get you down.

Scary

Hello everyone.

Today was a fun day. My family celebrated my nephew's first birthday.

However, this last half hour was terrifying for me. Before my mom left to run some errands, she asked me to mow the lawn while she was gone. Thank goodness she said only the front lawn, because this next part is scary, to say the least.

I went outside, got the lawnmower, and started to mow. Everything was fine. It was a couple minutes in that my VNS went off. I couldn't get a deep enough breath, but I kept going anyway. Three minutes later, it went off again. That time, I stopped the lawnmower, and waited the thirty seconds until it was done. However, it was beginning to scare me. I continued to mow the lawn, but when I was almost done, I collapsed in the grass. It was bad. I could not get any oxygen in my lungs. I tried taking deep breaths, but I probably only got a sliver of oxygen. As I waited for this to stop, I was terrified to get up and finish mowing. But I was almost done, so I finished.

My VNS went off as I was pushing the lawnmower to the backyard, and I hurriedly went into the house. One of my cats stared at me as I collapsed on the couch, heaving. After about five minutes of lying there, I got up, got two Izze drinks, and went to my room.

Breathing is automatic for us. Our brain tells our body to breathe, and it does. So, not being able to breathe really freaked me out. I haven't been this scared in a long time.

Rambling About...Things?

Uhm. So it's been forever. Seriously. Forever. I guess I could say a lot has happened. Nothing big, but still.

Life is mostly the same. No job. No license. The Epilepsy is still here and it's not going anywhere. It's kind-of one big circle of repetition.

I've been pretty down lately. There's a lot of factors that go into that and I bet you can guess one of them. That's right: Epilepsy. It doesn't help that I have anxiety and depression to go along with that. I've been so exhausted from life.

I calculated how many miligrams of medication I take a day and it disturbs me. I've done it before, but because I've had two more medications added to the three I already had, I figured it out again. So, after adding up all of my medications, I now take 5,050 mg. of medications a day. That does not include supplements.

In the morning I take Keppra XR and Zoloft and at night I take Oxtellar XR, Lamictal XR, and Trazodone. The Zoloft is for depression and anxiety, and the Trazedone is for insomnia. The supplements I take are: Fish Oil, Vitamin D3, Vitamin C, Magnisium, Vitamin K, and Folic Acid. The Folic Acid is especially important for me because the anti-convulsant medications I take drain the Folic Acid out of my body. Therefore, I must put it back in. Honestly, I get quite frustrated from having to put all of these medications inside my body.

On the side of taking my main medications and supplements, I also have Lorazepam which I take when I have seizure clusters. I always swipe my VNS magnet, but if I happen to have the Lorazepam, I take that also. Along with that, I occasionally take Zofran. It is for when I have nausea. I don't take that one too often.

I don't actually know what this post is supposed to be about. Maybe it's just a ramble post. I'm sure it won't make sense to me once I am well-rested again.