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.
Monday, July 18, 2016
Friday, May 27, 2016
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.
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.
Saturday, May 7, 2016
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.
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.
Wednesday, April 27, 2016
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.
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.
Saturday, March 26, 2016
Epilepsy Awareness Day!
Hellloooo everyone! Today is a grand day. It is Epilepsy Awareness Day! It's the day we are supposed to wear purple to support Epilepsy Awareness!
I have to remind my family every year that March 26th is the day we support the awareness of Epilepsy. It's not a holiday or anything, so that is okay. Today I woke up and put on a purple shirt I got from the Women's Expo years ago. It has some website written on it that I have never heard of, but it is purple, so I am wearing it. I also put on a necklace that my mom bought me a couple years ago. It says, "never never give up" and a bracelet she got me that has purple beads and a charm that is a purple ribbon. Really, only people with Epilepsy know about this day. That is just fine though, because I love having a day devoted to Epilepsy.
This morning when I told my father what day it was, he said, "Oh no, I'm not wearing any purple". He then went to his room and came back wearing a purple sweater.
Tomorrow is Easter and today my niece and baby nephew got to go out and find the candy the Easter Bunny left for them! That was fun. She and my baby nephew got a basket full of candy as well. The Easter Bunny thought of me too, and left me a basket. After the hunt, we all had breakfast. It was quite delicious.
This post is a little short, but I hope you all have a great Easter and Epilepsy Awareness Day!
I have to remind my family every year that March 26th is the day we support the awareness of Epilepsy. It's not a holiday or anything, so that is okay. Today I woke up and put on a purple shirt I got from the Women's Expo years ago. It has some website written on it that I have never heard of, but it is purple, so I am wearing it. I also put on a necklace that my mom bought me a couple years ago. It says, "never never give up" and a bracelet she got me that has purple beads and a charm that is a purple ribbon. Really, only people with Epilepsy know about this day. That is just fine though, because I love having a day devoted to Epilepsy.
This morning when I told my father what day it was, he said, "Oh no, I'm not wearing any purple". He then went to his room and came back wearing a purple sweater.
Tomorrow is Easter and today my niece and baby nephew got to go out and find the candy the Easter Bunny left for them! That was fun. She and my baby nephew got a basket full of candy as well. The Easter Bunny thought of me too, and left me a basket. After the hunt, we all had breakfast. It was quite delicious.
This post is a little short, but I hope you all have a great Easter and Epilepsy Awareness Day!
Friday, March 11, 2016
What Is Positive About This?
Having Epilepsy. Having seizures. How could anything positive come from that? Yeah... I'm not sure, but I'm pretty sure there is something. Let's see.....
I've always thought that Epilepsy was a negative thing. There's never been anything good that has come from it. I mean, I've had seizures for seven years and there's never been anything jolly that's come from it. Never been a day where after a seizure, I've jumped for joy. I've never said, "Whoopee!!! That was fun! Let's do it again!!" It's nothing to be happy about. But, I've been thinking about this topic for the past few days and I have realized that even though having Epilepsy isn't something to shout for joy about, it's changed my life completely in every way. That is obvious, right?
When I was younger, I was super shy. I would cry over everything. My mom couldn't drop me off at preschool most of the time because I would start bawling. I would have to get dropped off by my friend and her mom instead. For the first few years of elementary school, I would get so nervous to go to school that I would throw up on the walk there. I've just always been a shy person.
In the sixth grade I had made some great friends, so by the time I got into middle school, I was set. We had amazing times and I loved being with them. I was also pretty dang confident in the seventh grade. However, a couple months after the start of eighth grade, that changed completely. I had my first seizure and that threw away my confidence. My friends started to treat me different, so I learned to not tell anyone about my Epilepsy, unless I truly had to. When I got into high school, my Grand Mal seizures were under control. I then only had Complex-Partial seizures. I would have them in front of my new friends and I would either pretend I didn't have the seizure, or on rare occasions, I would tell them. Either way, I could tell they were freaked out.
Anyways, my self-esteem was nowhere to be found. I had a teeny bit, maybe a 2 out of 10. So that was fun.
It was really in my Junior year of high school when I learned some important things. I learned that I wasn't the only one with Epilepsy. I met a few people at my school who also had it. Also, my sister had found a website that was all about Epilepsy and I was able to chat with others who had it. I learned that even though I suffered from Epilepsy, some people had it worse. I was in a class where I helped some students with disabilities. Some of them had Down Syndrome. Some had Cerebral Palsy. It really opened my eyes because even though I suffered like them, I didn't have it as extreme as their conditions.
Now that I suffer from Epilepsy, I empathize with others who have it as well. Whenever I see someone have a seizure, I know how they are feeling. I know how scared they are. Watching a seizure, I am not nervous like others are. However, before I started having seizures, I was terrified of seeing them.
I've mentioned this before, but my Junior year was when I became best friends with my best friend. That isn't something that has to do with my Epilepsy, but knowing that she accepts me for who I am and understands that I have Epilepsy, that is priceless. She doesn't get scared when I have a seizure in front of her. She simply waits for it to be over and because I have clusters of seizures, asks me if I am okay. I am so lucky to have found her.
It's interesting because for the first few years of having Epilepsy, I did not think my family understood it at all. I thought that since they did not have seizures, they didn't understand what I was going through. It made me upset at times when they would try to help me feel better. I was about 17 when I realized something. Just because no one in my family has seizures, does not mean they don't know I'm suffering. They have gone through hard times themselves. My family has their own health issues and though they are not the same as mine, they know what it feels like to have health problems. I know they love me and are always trying to help.
Something my dad told me really speaks to me. My mom and dad traveled to Cambodia in 2014 and my dad met a man who has a son with Epilepsy. Now. Cambodia is not like the United States. They do not have good health care and because of this, he is not able to get medications for his son. His son has to endure the seizures everyday. When my dad shared that with me, I could not believe how blessed the people of the United States really are. We have amazing doctors who can help us at any time. We are able to receive medications to help us get better. Though I have to take five medications everyday, three of which are anti-convulsants, I am grateful because if I did not have them, I would be having Grand Mal seizures everyday.
Another thing I am incredibly grateful for is my insurance company. Because of them, I am able to have these medications. If my family did not have insurance, we would not be able to afford my medications. I would not have the Extended Release of Trileptal (Oxtellar XR). I would still be suffering from double vision everyday. I am extremely grateful that my insurance finally accepted our appeal.
I guess there are some positive things that have come from having Epilepsy. I just had to look hard enough.
I've always thought that Epilepsy was a negative thing. There's never been anything good that has come from it. I mean, I've had seizures for seven years and there's never been anything jolly that's come from it. Never been a day where after a seizure, I've jumped for joy. I've never said, "Whoopee!!! That was fun! Let's do it again!!" It's nothing to be happy about. But, I've been thinking about this topic for the past few days and I have realized that even though having Epilepsy isn't something to shout for joy about, it's changed my life completely in every way. That is obvious, right?
When I was younger, I was super shy. I would cry over everything. My mom couldn't drop me off at preschool most of the time because I would start bawling. I would have to get dropped off by my friend and her mom instead. For the first few years of elementary school, I would get so nervous to go to school that I would throw up on the walk there. I've just always been a shy person.
In the sixth grade I had made some great friends, so by the time I got into middle school, I was set. We had amazing times and I loved being with them. I was also pretty dang confident in the seventh grade. However, a couple months after the start of eighth grade, that changed completely. I had my first seizure and that threw away my confidence. My friends started to treat me different, so I learned to not tell anyone about my Epilepsy, unless I truly had to. When I got into high school, my Grand Mal seizures were under control. I then only had Complex-Partial seizures. I would have them in front of my new friends and I would either pretend I didn't have the seizure, or on rare occasions, I would tell them. Either way, I could tell they were freaked out.
Anyways, my self-esteem was nowhere to be found. I had a teeny bit, maybe a 2 out of 10. So that was fun.
It was really in my Junior year of high school when I learned some important things. I learned that I wasn't the only one with Epilepsy. I met a few people at my school who also had it. Also, my sister had found a website that was all about Epilepsy and I was able to chat with others who had it. I learned that even though I suffered from Epilepsy, some people had it worse. I was in a class where I helped some students with disabilities. Some of them had Down Syndrome. Some had Cerebral Palsy. It really opened my eyes because even though I suffered like them, I didn't have it as extreme as their conditions.
Now that I suffer from Epilepsy, I empathize with others who have it as well. Whenever I see someone have a seizure, I know how they are feeling. I know how scared they are. Watching a seizure, I am not nervous like others are. However, before I started having seizures, I was terrified of seeing them.
I've mentioned this before, but my Junior year was when I became best friends with my best friend. That isn't something that has to do with my Epilepsy, but knowing that she accepts me for who I am and understands that I have Epilepsy, that is priceless. She doesn't get scared when I have a seizure in front of her. She simply waits for it to be over and because I have clusters of seizures, asks me if I am okay. I am so lucky to have found her.
It's interesting because for the first few years of having Epilepsy, I did not think my family understood it at all. I thought that since they did not have seizures, they didn't understand what I was going through. It made me upset at times when they would try to help me feel better. I was about 17 when I realized something. Just because no one in my family has seizures, does not mean they don't know I'm suffering. They have gone through hard times themselves. My family has their own health issues and though they are not the same as mine, they know what it feels like to have health problems. I know they love me and are always trying to help.
Something my dad told me really speaks to me. My mom and dad traveled to Cambodia in 2014 and my dad met a man who has a son with Epilepsy. Now. Cambodia is not like the United States. They do not have good health care and because of this, he is not able to get medications for his son. His son has to endure the seizures everyday. When my dad shared that with me, I could not believe how blessed the people of the United States really are. We have amazing doctors who can help us at any time. We are able to receive medications to help us get better. Though I have to take five medications everyday, three of which are anti-convulsants, I am grateful because if I did not have them, I would be having Grand Mal seizures everyday.
Another thing I am incredibly grateful for is my insurance company. Because of them, I am able to have these medications. If my family did not have insurance, we would not be able to afford my medications. I would not have the Extended Release of Trileptal (Oxtellar XR). I would still be suffering from double vision everyday. I am extremely grateful that my insurance finally accepted our appeal.
I guess there are some positive things that have come from having Epilepsy. I just had to look hard enough.
Saturday, February 27, 2016
Handling Side Effects
When you think of medicine, you think of something that will make you feel better. You get it when you are temporarily sick and you also take it long term if you need to, just like me.
Obviously I take medications because if I do not, I will have seizures everyday.
Everybody has the freedom to choose what they want. I hate taking medications, so really, I could just say, "Nope. Not going to take them anymore". But, that would be a really stupid choice. From past experience, I know that if I forget one day of medications, I have a Grand Mal seizure. So, unless I want to go through that, I can't go off my medications.
In the past, I have told you all about my double vision experiences. That happened because I was taking Trileptal. The only time it went away was when I went on the Extended Release, "Oxtellar XR". That double vision was one of the worst things I've experienced. I never got out of bed because I couldn't see. I had to miss out on things that I would have really liked to have done. So, when my insurance finally approved our request, it was hallelujah for everyone.
Ever since I was a kid, I have had some tremors. My hands just shake sometimes. I have been noticing it more in the past year and I am starting to wonder if one of my medications is contributing to the tremors I already have. It could be one of the two new medications I started a few months ago: Trazodone or Zoloft.
When I was going to college in Idaho this past year, that was when the whole double vision thing was so bad. I already had zero friends. I was couped up in my bed till 1 pm. I felt so alone. No wait, I WAS so alone. I never thought the double vision would go away. My insurance was refusing to pay for the Oxtellar XR and we were not going to pay $1,000 a month for it. But when we kept pushing our insurance for it, it payed off.
Even though I am on Oxtellar XR now, I have learned that whenever I take my night medications at midnight or later, I wake up with double vision. It's happened ever since I started Trazodone and Zoloft a few months ago. But only if I take my night medications at midnight or later. I will tell you that it is so frustrating and tiring. I finally have the double vision under control and then if I take my night medications late, it happens in the morning. It feels like no matter how hard I try, it always goes downhill.
I've always felt so alone with my side effects. I've felt like nobody has ever had them as bad as I have.
What has kept me going is not one of those cliche inspirational quotes that people always say: "It's hope that keeps me going!" Yeah....NO. I just keep going because it's all I can do. I have to live with whatever side effects I have to experience. Having depression and anxiety in the mix has definitely not helped, but all I can say is that I have made it through everything that has been thrown at me.
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