I got my license back today. I feel like it might be time to turn over a new leaf and take control of my life again, and quit letting outside influences control me. My meds and seizures are at the most stable that they have ever been, and I feel like I might be on the verge of... normal.
I had forgotten what normal feels like. It feels good. It feels great. It feels fantastic. I don't ever want to go back. I don't ever want to be in my bad place again.
But I don't want to forget what it's like to be in that place, because if I forget what it's like to feel like shit, then maybe I'll forget how wonderful today feels, and I'll start to take advantage of that feeling. I don't ever want to lose that wonder.
Today, I have the world at my fingertips again. Today, I feel like I can take control of my life again. Today, I have epilepsy, and epilepsy does not have me. I might just go for a drive to celebrate.
Wednesday, July 7, 2010
Thursday, February 4, 2010
It's NeverEnding
So I know that a month ago when I posted, I was fairly confident it would be my last. I was wrong, because here I am again, back at it.
I once had a friend tell me that told me, convinced me, that my health problems would get better. Things would pass and I would be fine. That friend was wrong. I am not better. I am not getting better. If anything, I might be getting worse, and it is terrifying.
Last June, when I tried to come off one of my meds, the Dr. said that "if everything goes well, we won't see you until this time next year." Since that day, I have had 4 major tonic-clonic seizures, and so many simple-partials (or lightheaded spells, as I once referred to them) that I have lost count.
Yesterday I spent the afternoon in the ER. Usually hospitalization isn't necessary for a person with epilepsy. They have a seizure, and as long as they dont hit their head on anything, should be fine once they wake up. Shawn knows this, but he decided it would be good to call 911 yesterday because I wasn't breathing and had turned blue.
The scariest part is that this happened in the middle of the day. All my other large seizures have happened as I've been waking up in the morning. I have never had a simple little one generalize into a larger full-blown convulsion before. I am terrified. Before, I could rely on the fact that the chances of something happening to me are slim when I'm at work or school because all my major seizures have been as I'm waking up... but that's not the case anymore. What will happen next? Will they ever find meds that work for me?
I tried to go on another medicine about 3 weeks ago, and after 2 weeks of it, I broke out into a rash and fever for 3 days. I had to stop that medication, obviously. There are people who go their entire lives without finding a drug cocktail that works for them. What if that's me? What if I never get my license back? What if I have a seizure at work, or in the middle of class? I know that I'm probably stuck with this for the rest of my life, but what happens in 5 or 10 years when I want kids? Am I going to be able to stay home alone without fear of something happening to me?
In the course of one afternoon, so many things have changed, and my fear has exponentially spiked. What happens next? My health problems are not getting better. They are getting worse. I don't know if we can fix it. I am broken.
I once had a friend tell me that told me, convinced me, that my health problems would get better. Things would pass and I would be fine. That friend was wrong. I am not better. I am not getting better. If anything, I might be getting worse, and it is terrifying.
Last June, when I tried to come off one of my meds, the Dr. said that "if everything goes well, we won't see you until this time next year." Since that day, I have had 4 major tonic-clonic seizures, and so many simple-partials (or lightheaded spells, as I once referred to them) that I have lost count.
Yesterday I spent the afternoon in the ER. Usually hospitalization isn't necessary for a person with epilepsy. They have a seizure, and as long as they dont hit their head on anything, should be fine once they wake up. Shawn knows this, but he decided it would be good to call 911 yesterday because I wasn't breathing and had turned blue.
The scariest part is that this happened in the middle of the day. All my other large seizures have happened as I've been waking up in the morning. I have never had a simple little one generalize into a larger full-blown convulsion before. I am terrified. Before, I could rely on the fact that the chances of something happening to me are slim when I'm at work or school because all my major seizures have been as I'm waking up... but that's not the case anymore. What will happen next? Will they ever find meds that work for me?
I tried to go on another medicine about 3 weeks ago, and after 2 weeks of it, I broke out into a rash and fever for 3 days. I had to stop that medication, obviously. There are people who go their entire lives without finding a drug cocktail that works for them. What if that's me? What if I never get my license back? What if I have a seizure at work, or in the middle of class? I know that I'm probably stuck with this for the rest of my life, but what happens in 5 or 10 years when I want kids? Am I going to be able to stay home alone without fear of something happening to me?
In the course of one afternoon, so many things have changed, and my fear has exponentially spiked. What happens next? My health problems are not getting better. They are getting worse. I don't know if we can fix it. I am broken.
Friday, January 1, 2010
New Year
Happy New Year!
Part of me wants to start fresh, with an optimistic perspective, and write about the possibilities and opportunities to come. Luckily, my gag reflex overrules that, and I am much more willing to approach the new year with a cautious skepticism, realism rather than optimism, and continual thought as to where I am going and what I want to accomplish.
I don't feel comfortable writing as expressly as I once did. My private yet public blog space here feels a little like it's been invaded, and I am reminded that this is not a diary. It is public domain, and although that helped me move through many of my issues... I don't need it anymore. I don't need to feel like people are listening when they aren't, and I don't want to focus on who's reading this and has no right to be. That being said, I'm considering ending blogging entirely. I can't bring myself to do it today, but if this is my last post, then it just is.
Truth is, I have several resolutions this year. My persistent resolution: embrace a healthier lifestyle with proper eating, exercise, and hopefully some weight loss. But more importantly, I want to work at things that have always been difficult for me. Forgiveness, acceptance, and moving on. I want to forgive myself and others, and genuinely succeed, not just pretend. I want to be able to accept the conditions of my life that have changed, most notably the epilepsy thing. It is a condition that I will probably have for the rest of my life, and it's not under control yet. I need to try to deal with that instead of vain hope or denial. And if I can succeed in forgiveness and acceptance, perhaps I can look at life the way I did a long time ago: like the world is a wide world of possibility, instead of feeling caged, trapped, and hopeless.
If anyone reads this, goodbye. If no one does, then I am once again talking to myself. It is 2010, a new year, a new decade, and time to keep myself to myself instead of writing every thought and feeling in public domain. I don't need this anymore.
Part of me wants to start fresh, with an optimistic perspective, and write about the possibilities and opportunities to come. Luckily, my gag reflex overrules that, and I am much more willing to approach the new year with a cautious skepticism, realism rather than optimism, and continual thought as to where I am going and what I want to accomplish.
I don't feel comfortable writing as expressly as I once did. My private yet public blog space here feels a little like it's been invaded, and I am reminded that this is not a diary. It is public domain, and although that helped me move through many of my issues... I don't need it anymore. I don't need to feel like people are listening when they aren't, and I don't want to focus on who's reading this and has no right to be. That being said, I'm considering ending blogging entirely. I can't bring myself to do it today, but if this is my last post, then it just is.
Truth is, I have several resolutions this year. My persistent resolution: embrace a healthier lifestyle with proper eating, exercise, and hopefully some weight loss. But more importantly, I want to work at things that have always been difficult for me. Forgiveness, acceptance, and moving on. I want to forgive myself and others, and genuinely succeed, not just pretend. I want to be able to accept the conditions of my life that have changed, most notably the epilepsy thing. It is a condition that I will probably have for the rest of my life, and it's not under control yet. I need to try to deal with that instead of vain hope or denial. And if I can succeed in forgiveness and acceptance, perhaps I can look at life the way I did a long time ago: like the world is a wide world of possibility, instead of feeling caged, trapped, and hopeless.
If anyone reads this, goodbye. If no one does, then I am once again talking to myself. It is 2010, a new year, a new decade, and time to keep myself to myself instead of writing every thought and feeling in public domain. I don't need this anymore.
Friday, December 18, 2009
Wants and Needs
'Tis the holiday season, and that means that it's the time to think about things that I want, things that I need, and what the difference is. Truth is, I don't really need anything. I could get through the future days the same way I've gotten through past days. People could argue that I need my meds so that I don't flop over seizing, hit my head and die. People could argue that I need money to pay bills and buy groceries and school supplies. People could argue that because of money, I therefore need my job. All of these would be correct, but in reality, what can a person live off of? Very little is actually a necessity. Food, shelter, and water... all of which I have. So in that sense, I don't need anything.
Wants are a completely different story. I want my computer to work smoothly. I want a new phone, or for mine to work the way it's supposed to. I want a new backpack. I want peace on earth. I want tolerance and understanding. I want certain people to be part of my life. I want friends. I want certain circumstances to change. I want a lot of things. But the thing about wants is that they are much more difficult to satisfy than needs, and one must learn to be content with wanting. Wants don't carry the expectation of being fulfilled; they only exist as desires. And I'm ok with that. Yes, I want things, but I can accept that I won't get most of them.
Then there are wants that become needs. There are moments when I truly feel like if I don't do something or get something or change something that I will go completely insane. Today is one of those days, and luckily for me, it is an easy fix. I need to exercise. I need to do karate. I need the peace that comes with it. I need the automatic responses. I need the sweat. I would like bruises. I need to do what I do best, for the sake of my own sanity.
So that's what I'm going to do today. I am going to go to school and work out. I will find peace, calm, and harmony. I will be centered. I will work hard. I will be in my happy place. And then, when I'm there, the rest of the world will fall away as it always does, and I will forget the rest of the wants. I will forget the struggles I have been dealing with for the last year. The thing I love most about karate is that it has the capacity to change absolutely everything without actually changing anything at all. And sometimes, that's all I need. That's all anyone needs: simple moments of quiet in a storm.
Wants are a completely different story. I want my computer to work smoothly. I want a new phone, or for mine to work the way it's supposed to. I want a new backpack. I want peace on earth. I want tolerance and understanding. I want certain people to be part of my life. I want friends. I want certain circumstances to change. I want a lot of things. But the thing about wants is that they are much more difficult to satisfy than needs, and one must learn to be content with wanting. Wants don't carry the expectation of being fulfilled; they only exist as desires. And I'm ok with that. Yes, I want things, but I can accept that I won't get most of them.
Then there are wants that become needs. There are moments when I truly feel like if I don't do something or get something or change something that I will go completely insane. Today is one of those days, and luckily for me, it is an easy fix. I need to exercise. I need to do karate. I need the peace that comes with it. I need the automatic responses. I need the sweat. I would like bruises. I need to do what I do best, for the sake of my own sanity.
So that's what I'm going to do today. I am going to go to school and work out. I will find peace, calm, and harmony. I will be centered. I will work hard. I will be in my happy place. And then, when I'm there, the rest of the world will fall away as it always does, and I will forget the rest of the wants. I will forget the struggles I have been dealing with for the last year. The thing I love most about karate is that it has the capacity to change absolutely everything without actually changing anything at all. And sometimes, that's all I need. That's all anyone needs: simple moments of quiet in a storm.
Friday, November 27, 2009
The Last Three Days....
have been a little rough.
I spent Tuesday and Wednesday at the Mayo, again. This time I met with an epilepsy specialist named Dr. Cascino. He was really super nice, and seemed way more concerned and interested in my well-being than Kantarci ever did. However, he talked at a million miles a minute and sometimes it was kinda hard to keep up. On the plus side, he has three goals for me: be seizure free, be on meds that I am side-effect free, and be able to safely and legally do anything anyone else my age can do (like drive). YAY FOR AWESOME GOALS! On the minus side, he's really concerned about the lightheaded spells or simple-partial seizures I've been having, and is deeply worried about the fact that I have them every day, several times a day. This worries me, because I have grown used to them and had almost brushed them off as a minor inconvenience, but if they really are seizures... it just gets a little scary again. On the neutral side, because it's helpful but inconvenient, I get to spend another 3 days in the hospital. December 14th I check into Saint Mary's, get my head all wired up, sit in a bed, eat hospital food, and be video-monitored 24/7 for 2-3 days. Greattttt. So I have that to worry about, and mostly, trying to get all my school stuff for the semester done before all that happens. Yay for stresss! (note the sarcasm).
So that was Tuesday and Wednesday. Wednesday night Shawn and I drove out to Paynesville to spend time with my family for thanksgiving. 'Twas uneventful. We ate and spent the afternoon yesterday with his family, and that was entertaining. Shawn thought it would be funny to slam the cool-whip lid into my face, so I smeared his with snicker-salad. It was enjoyable. Shawn's Grandma prayed for me and got all teary-eyed, which was sweeet but very awkward. Shawn made Kelsey cry by insulting her boyfriend. We watched Up, and I took a nap. Shawn and Josh wrestled and got in some brotherly bonding time. It was a good thanksgiving. We went back to my parents' house and watched Shawn's Star Trek movie on the big screen TV. Then we drove home...
When we got home it was almost 10, and knowing that Turbo's light switches off a little after 9, I went to go check on him and give him some food. His light was off, his temperature was stable, everything appeared as it should have, but his little body was unresponsive. We hope that he died in his sleep- he was curled up in his bag like he always does when he's sleeping. And of course, we hope he died painlessly. RIP Turbo, we'll miss you.
So that royally sucked. Today is black friday and I have to work, of course, as does Shawn. The thing is, Shawn is working this morning, and I don't work until night. We're hoping there will be enough time in between that we cann take Turbo's body to the vet and have him properly taken care of. I'm still crying.
In short- my health problems aren't getting better. Thanksgiving was decent. Turbo died :( and I'm super-stressed with work and school before I have to go back into the hospital. It's been a rough 3-4 days.
I spent Tuesday and Wednesday at the Mayo, again. This time I met with an epilepsy specialist named Dr. Cascino. He was really super nice, and seemed way more concerned and interested in my well-being than Kantarci ever did. However, he talked at a million miles a minute and sometimes it was kinda hard to keep up. On the plus side, he has three goals for me: be seizure free, be on meds that I am side-effect free, and be able to safely and legally do anything anyone else my age can do (like drive). YAY FOR AWESOME GOALS! On the minus side, he's really concerned about the lightheaded spells or simple-partial seizures I've been having, and is deeply worried about the fact that I have them every day, several times a day. This worries me, because I have grown used to them and had almost brushed them off as a minor inconvenience, but if they really are seizures... it just gets a little scary again. On the neutral side, because it's helpful but inconvenient, I get to spend another 3 days in the hospital. December 14th I check into Saint Mary's, get my head all wired up, sit in a bed, eat hospital food, and be video-monitored 24/7 for 2-3 days. Greattttt. So I have that to worry about, and mostly, trying to get all my school stuff for the semester done before all that happens. Yay for stresss! (note the sarcasm).
So that was Tuesday and Wednesday. Wednesday night Shawn and I drove out to Paynesville to spend time with my family for thanksgiving. 'Twas uneventful. We ate and spent the afternoon yesterday with his family, and that was entertaining. Shawn thought it would be funny to slam the cool-whip lid into my face, so I smeared his with snicker-salad. It was enjoyable. Shawn's Grandma prayed for me and got all teary-eyed, which was sweeet but very awkward. Shawn made Kelsey cry by insulting her boyfriend. We watched Up, and I took a nap. Shawn and Josh wrestled and got in some brotherly bonding time. It was a good thanksgiving. We went back to my parents' house and watched Shawn's Star Trek movie on the big screen TV. Then we drove home...
When we got home it was almost 10, and knowing that Turbo's light switches off a little after 9, I went to go check on him and give him some food. His light was off, his temperature was stable, everything appeared as it should have, but his little body was unresponsive. We hope that he died in his sleep- he was curled up in his bag like he always does when he's sleeping. And of course, we hope he died painlessly. RIP Turbo, we'll miss you.
So that royally sucked. Today is black friday and I have to work, of course, as does Shawn. The thing is, Shawn is working this morning, and I don't work until night. We're hoping there will be enough time in between that we cann take Turbo's body to the vet and have him properly taken care of. I'm still crying.
In short- my health problems aren't getting better. Thanksgiving was decent. Turbo died :( and I'm super-stressed with work and school before I have to go back into the hospital. It's been a rough 3-4 days.
Friday, November 20, 2009
Stress
Ugh, so it's getting to that time of year when the stress is piling up. I have 3 major papers, and presentations to accompany them, none of which have adequate theses, and all of which need massive revisions.
I am tired, I am working a lot, and after thanksgiving our hours at work will be extended to midnight.
I have 2 days of Mayo appointments next week, and I'm worried about those. What if something is seriously wrong with me? Oh, and I found out that Paula, my advisor and prof of 2 of my classes this semester, has also had seizures and is on meds. It would have been nice to know this sooner, have someone who understands. Ugh. Whatever.
Although logically speaking, I have lots of time to do my work, I feel like I don't, and just thinking about it stresses me out more, which doesn't help, because when I'm stressed I get even less actually accomplished. In fact, I have a tendency to sleep a lot more.
Shawn told me to relax today, try to get some thought in about stuff without actually working, and it's helping. I'm actually talking to Dugan about my atheism paper and it's going really well and helping a lot. I just need to learn to relax.
I am going to be able to relax, right? I'm not going to go insane? Right?!
I am tired, I am working a lot, and after thanksgiving our hours at work will be extended to midnight.
I have 2 days of Mayo appointments next week, and I'm worried about those. What if something is seriously wrong with me? Oh, and I found out that Paula, my advisor and prof of 2 of my classes this semester, has also had seizures and is on meds. It would have been nice to know this sooner, have someone who understands. Ugh. Whatever.
Although logically speaking, I have lots of time to do my work, I feel like I don't, and just thinking about it stresses me out more, which doesn't help, because when I'm stressed I get even less actually accomplished. In fact, I have a tendency to sleep a lot more.
Shawn told me to relax today, try to get some thought in about stuff without actually working, and it's helping. I'm actually talking to Dugan about my atheism paper and it's going really well and helping a lot. I just need to learn to relax.
I am going to be able to relax, right? I'm not going to go insane? Right?!
Tuesday, November 10, 2009
Miscellaneous Updates
1) I had another seizure. November 3rd. I can't be 100% sure, because Shawn was already gone to class for the day. I woke up and had a terrible headache and nausea, got up to pee, was super tired, and went back to bed for another hour. When I got up the second time, I showered and brushed my teeth like I normally do, and while brushing my teeth I realized that my bottom lip was swollen and puffy and looked like I had bitten it. I had been wearing my retainer so it wasn't nearly as bad as the damage my tongue took last time, in fact, most of the puffiness was gone by the end of the day.
Anyway, I called Kantarci and he set up an appointment with one of his colleagues that deals specifically with epilepsy, so for the two days before Thanksgiving I have another MRI, EEG and doctor's appointment in Rochester. Wish me luck.
2) I turned 21!!!! Yay!!! Got a bunch of gift cards, Mom and Knoll came to town and took me shopping and out for lunch, and I hung out with Nina and my new friend Laura and Laura's boyfriend Bob. It was fun. I got drunk, but not exceptionally so, and I was fine the next morning (both hangover-wise and seizure-wise). So yah, I have officially surpassed one of the last major legal hurdles. 16 was driving, 18 was voting and a bunch of other stuff, 21 was drinking. I'M A BIG KID NOW! :)
3) I'm pluggin away at school. Slowly but surely getting through the semester. It's tough, and I'm quickly running out of steam. I have 2 of my major papers mostly done, I plan on working on one this weekend, and I will have a major presentation based on those papers for each of my classes. Slowly but surely... can't give up... damn some days motivation is hard to come by.
Anyway, I called Kantarci and he set up an appointment with one of his colleagues that deals specifically with epilepsy, so for the two days before Thanksgiving I have another MRI, EEG and doctor's appointment in Rochester. Wish me luck.
2) I turned 21!!!! Yay!!! Got a bunch of gift cards, Mom and Knoll came to town and took me shopping and out for lunch, and I hung out with Nina and my new friend Laura and Laura's boyfriend Bob. It was fun. I got drunk, but not exceptionally so, and I was fine the next morning (both hangover-wise and seizure-wise). So yah, I have officially surpassed one of the last major legal hurdles. 16 was driving, 18 was voting and a bunch of other stuff, 21 was drinking. I'M A BIG KID NOW! :)
3) I'm pluggin away at school. Slowly but surely getting through the semester. It's tough, and I'm quickly running out of steam. I have 2 of my major papers mostly done, I plan on working on one this weekend, and I will have a major presentation based on those papers for each of my classes. Slowly but surely... can't give up... damn some days motivation is hard to come by.
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