I posted this link on Facebook the yesterday and mentioned that I think #4 is only partly correct:
http://www.huffingtonpost.com/ilana-jacqueline/personal-health-_b_5482294.html
A friend who also suffers from a chronic condition shared it as well, and he agreed with my analysis. (I say condition because neither of them are an illness. We aren't "ill" in any way, we have a condition.) He added his own title comment, and I commented on his post and said: "It's a fight that you can never stop fighting, and if you lose the consequences are dire."
After a post that I just made this morning, I thought back to this article. The fight is not always physical, and I think this article (linked above) suggests that it is. In fact, 90% of the time the fight is not physical. More often the fight is mental and/or emotional. People are often asking me "how are you so calm about this!?" Others are freaking out about my seizures and I'm all like "meh." Because I have to be calm about it, and just accept it, in order to win the fight. I have to always think that I can go longer without a seizure. I have to do what needs to be done in order to live on to be a better person every day.
Today I posted that I have been 12 days seizure free and that I go to camp in 40 days. At the end I said that I hope to be 52 days seizure free when I get to camp. This is the thought process that I must have. I can't say "I hope to be at least 12 days seizure free when I get there!" Because that is not my hope. My hope is that I never have a seizure again. Is it a realistic possibility? No. But I can always hope.
I am not a religious person, so I don't believe in "faith" that most people talk about and believe in. Faith is a blind belief in something that cannot be proven or disproven. It is trust in something that you have been told even though you have no reason to trust it. Faith is something that people use to force themselves to believe something that they wouldn't otherwise believe.
I do, however, believe in hope. Hope is a state of mind. Hope is something empowering, hope is positive thinking, and positive thinking can have both mental and physical benefits. For some people faith leads to hope, and I therefore I cannot fault people who have faith. If your faith leads to hope then keep having faith, because when you lose hope you lose everything.
Just as I am not religious, I am also not an optimist, or a pessimist; I am a realist. I look at things as how they are, not how I want them to be. The glass isn't half full or half empty, the glass has water in it. This is why I say that it is not realistic to think that I will never have another seizure. It is an unrealistic thought, because I have had epilepsy all of the almost 30 years that I have been alive. But while I am realistic about the matter, it is absolutely necessary to hope that I won't have any more seizures.
Tuesday, July 1, 2014
Saturday, June 14, 2014
Seizure weekend
The past couple of days have not been fun.
Thursday
Thursday I went to lunch with 3 coworkers. Half-way through lunch (around 12:30) I started into a partial seizure. At first it was nothing out of the ordinary. My leg was twitching slightly, my head felt a bit weird, but nothing too bad.
The walk from Dinosaur BBQ back to the office was a bit rough, because of the leg, but not too bad. I got back to the office and sat down at my desk. Soon after I got to my desk my leg started going a little more intense. It lasted a while then calmed down. A few minutes later it started back up again. I was doing as much work as I could throughout this whole thing - answering questions for my interns, helping them figure out some issues, etc.
At 2:30 I was supposed to meet with the server team to talk about something that we had discussed at our larger Monday morning meeting. At this point my leg had stopped, and I could tell that the seizure had subsided. I knew at the time what I was supposed to be talking about at the meeting, but soon after I got to the meeting I forgot what we were going to talk about. Another seizure had started. The server team had something dropped on them last minute, and they were talking about that when I got there. Nobody remembered why I was there, and I still don't recall.
The seizure that started during the meeting was in my arm, as it has been occasionally before. It got pretty intense fairly quickly, so around 3:15 I told my boss that I was going home to rest. The seizure stopped shortly after getting home, and I slept most of the day.
Friday
Friday morning I woke up at 6:30, as I always do, knowing that I was not likely going to be in any shape to go to work. Sure enough, I was still exhausted from the 3 hour seizure(s) the day before, and I had a headache as I often do after a seizure. Usually these headaches last for quite some time, and will not subside unless I sleep them off.
Shortly after waking up I sent a text to my boss, and my team, telling them that I was OK (since they had witnessed the seizures the day before) but that I would not be in because I was still tired and had a headache that was not likely to go away any time soon.
At 7:15 another seizure started; Again it was in my arm. It's not normal for me to have this many seizures in such a short time, so I sent a text to my mom telling her what was going to the hospital and quickly walked across the street to the hospital. (Yes, luckily I just moved almost directly across the street from a hospital.) My mom was going to pick me up and drive me to the hospital, but my arm was going so intensely that I didn't want to wait for her.
I got to the hospital, went through the normal stuff (gave them my name, birthday, etc.) and went into a room to be taken care of. In the room, they took my vitals - blood pressure, temperature, pulse - most of which had to be done on my left arm, since the right one was shaking violently. They asked if I was in any pain - which I was, but mostly from the sore muscles from the violent shaking - and asked how much on a scale of 1-10. They asked again why I was there, at which point I gave them more information about the situation. They asked about allergies, of which I only have seasonal allergies. All of the normal stuff when going to the hospital (unfortunately, I know this procedure all too well.)
I was taken to a bed, where I was given an IV (also in my left arm.) Shortly after, unrelated to the IV, I started feeling some pretty intense pain in my right arm from the muscles contracting and expanding so quickly and violently. (It didn't help that I was in the gym on Tuesday working my arms.) Eventually it got to the point where it was not only my arm, but my side, (abs, lats, etc.) my shoulder, and my bicep - which I know is part of my arm, but it's usually just my hand and forearm; It usually doesn't go up past my elbow. It got so violent that my mom actually took a video of it on her phone.
It was by far the most violent and painful partial seizure that I have ever experienced. At 8:00am, 45 minutes after it started, the seizure finally stopped. For quite some time after it ended I was still wincing in pain from the seizure, and was extremely tired. I sat with my eyes closed, even answering questions from the nurses and doctors without opening my eyes.
Eventually my arm felt almost like it was not even there, When I went to move it it felt almost weightless, but at the same time was extremely sore. If I bent it too far, or straightened it too much, it would hurt, so I had to let it sit at a very specific angle.
I had told the nurse in the first examination room that I was starting to wean off of the Keppra that I have been taking, so they later gave me 1500mg of liquid Keppra, to hopefully prevent further seizures, and gave me a prescription for Ativan in case I had another extreme seizure. For those who don't know, Ativan is used an emergency drug for seizure that last extremely long and/or are extremely violent. My prescription says that I can "take 1 tablet every hour as needed for seizure" with a "maximum daily dose of 3 tablets." If I am still having issues after using those 3 tablets, I am to return to the ER. (Hopefully I don't need any of them.) The doctor also told me that it will make me extremely tired if I need to use it.
Just like Thursday, I again slept most of the day, waking up every couple of hours to eat and because my body isn't used to being asleep during the day. (Not since I stopped working at the hospital at least.) Later in the evening, somewhere around 8pm, I had another small and short seizure that only affected my foot and lower leg. It only lasted 5 minutes or so, maybe less, so it wasn't too bad.
Right now (early Saturday morning) the entire upper right quarter of my body is sore. My side, my arm, my shoulder, and even my back. My leg is a bit sore from Thursday's seizure(s), and the small seizure last night, but not nearly as bad as my upper body.
Friday Morning's seizure:
Going Forward
Now I am supposed to return to my previous dose of 2000mg of Keppra each day, and I need to follow up with my neurologist this coming week. From talking to him in the past, he wants me to try a medicine called Vimpat next, but after looking into it I found that it is a controlled substance. From what I've heard, a paper prescription is required for every refill of a controlled substance, which would mean that I need to physically go to his office every month to get my refills.
We have talked about some other options in the past. He mentioned Topamax, but I have heard nothing but bad things about Topamax, so that's another one that I don't want to try unless absolutely necessary. He has also mentioned Zonegran, which some of my friends are on, and I want to try that first. Last time we talked he was pretty much set on Vimpat, but he usually listens to what I want so hopefully Zonegran will be my next try.
Thursday
Thursday I went to lunch with 3 coworkers. Half-way through lunch (around 12:30) I started into a partial seizure. At first it was nothing out of the ordinary. My leg was twitching slightly, my head felt a bit weird, but nothing too bad.
The walk from Dinosaur BBQ back to the office was a bit rough, because of the leg, but not too bad. I got back to the office and sat down at my desk. Soon after I got to my desk my leg started going a little more intense. It lasted a while then calmed down. A few minutes later it started back up again. I was doing as much work as I could throughout this whole thing - answering questions for my interns, helping them figure out some issues, etc.
At 2:30 I was supposed to meet with the server team to talk about something that we had discussed at our larger Monday morning meeting. At this point my leg had stopped, and I could tell that the seizure had subsided. I knew at the time what I was supposed to be talking about at the meeting, but soon after I got to the meeting I forgot what we were going to talk about. Another seizure had started. The server team had something dropped on them last minute, and they were talking about that when I got there. Nobody remembered why I was there, and I still don't recall.
The seizure that started during the meeting was in my arm, as it has been occasionally before. It got pretty intense fairly quickly, so around 3:15 I told my boss that I was going home to rest. The seizure stopped shortly after getting home, and I slept most of the day.
Friday
Friday morning I woke up at 6:30, as I always do, knowing that I was not likely going to be in any shape to go to work. Sure enough, I was still exhausted from the 3 hour seizure(s) the day before, and I had a headache as I often do after a seizure. Usually these headaches last for quite some time, and will not subside unless I sleep them off.
Shortly after waking up I sent a text to my boss, and my team, telling them that I was OK (since they had witnessed the seizures the day before) but that I would not be in because I was still tired and had a headache that was not likely to go away any time soon.
At 7:15 another seizure started; Again it was in my arm. It's not normal for me to have this many seizures in such a short time, so I sent a text to my mom telling her what was going to the hospital and quickly walked across the street to the hospital. (Yes, luckily I just moved almost directly across the street from a hospital.) My mom was going to pick me up and drive me to the hospital, but my arm was going so intensely that I didn't want to wait for her.
I got to the hospital, went through the normal stuff (gave them my name, birthday, etc.) and went into a room to be taken care of. In the room, they took my vitals - blood pressure, temperature, pulse - most of which had to be done on my left arm, since the right one was shaking violently. They asked if I was in any pain - which I was, but mostly from the sore muscles from the violent shaking - and asked how much on a scale of 1-10. They asked again why I was there, at which point I gave them more information about the situation. They asked about allergies, of which I only have seasonal allergies. All of the normal stuff when going to the hospital (unfortunately, I know this procedure all too well.)
I was taken to a bed, where I was given an IV (also in my left arm.) Shortly after, unrelated to the IV, I started feeling some pretty intense pain in my right arm from the muscles contracting and expanding so quickly and violently. (It didn't help that I was in the gym on Tuesday working my arms.) Eventually it got to the point where it was not only my arm, but my side, (abs, lats, etc.) my shoulder, and my bicep - which I know is part of my arm, but it's usually just my hand and forearm; It usually doesn't go up past my elbow. It got so violent that my mom actually took a video of it on her phone.
It was by far the most violent and painful partial seizure that I have ever experienced. At 8:00am, 45 minutes after it started, the seizure finally stopped. For quite some time after it ended I was still wincing in pain from the seizure, and was extremely tired. I sat with my eyes closed, even answering questions from the nurses and doctors without opening my eyes.
Eventually my arm felt almost like it was not even there, When I went to move it it felt almost weightless, but at the same time was extremely sore. If I bent it too far, or straightened it too much, it would hurt, so I had to let it sit at a very specific angle.
I had told the nurse in the first examination room that I was starting to wean off of the Keppra that I have been taking, so they later gave me 1500mg of liquid Keppra, to hopefully prevent further seizures, and gave me a prescription for Ativan in case I had another extreme seizure. For those who don't know, Ativan is used an emergency drug for seizure that last extremely long and/or are extremely violent. My prescription says that I can "take 1 tablet every hour as needed for seizure" with a "maximum daily dose of 3 tablets." If I am still having issues after using those 3 tablets, I am to return to the ER. (Hopefully I don't need any of them.) The doctor also told me that it will make me extremely tired if I need to use it.
Just like Thursday, I again slept most of the day, waking up every couple of hours to eat and because my body isn't used to being asleep during the day. (Not since I stopped working at the hospital at least.) Later in the evening, somewhere around 8pm, I had another small and short seizure that only affected my foot and lower leg. It only lasted 5 minutes or so, maybe less, so it wasn't too bad.
Right now (early Saturday morning) the entire upper right quarter of my body is sore. My side, my arm, my shoulder, and even my back. My leg is a bit sore from Thursday's seizure(s), and the small seizure last night, but not nearly as bad as my upper body.
Friday Morning's seizure:
Going Forward
Now I am supposed to return to my previous dose of 2000mg of Keppra each day, and I need to follow up with my neurologist this coming week. From talking to him in the past, he wants me to try a medicine called Vimpat next, but after looking into it I found that it is a controlled substance. From what I've heard, a paper prescription is required for every refill of a controlled substance, which would mean that I need to physically go to his office every month to get my refills.
We have talked about some other options in the past. He mentioned Topamax, but I have heard nothing but bad things about Topamax, so that's another one that I don't want to try unless absolutely necessary. He has also mentioned Zonegran, which some of my friends are on, and I want to try that first. Last time we talked he was pretty much set on Vimpat, but he usually listens to what I want so hopefully Zonegran will be my next try.
Friday, May 23, 2014
More medicine changes
689 days ago - July 3rd 2012 - I had my first ever (recognized) partial seizure. Soon after that my doctor and I started messing with my meds. Here we are, almost 2 years later, still making changes.
Almost about a year ago I went to my doctor telling him that I was having horrible emotional side effects from the Keppra that he put me on and said that I would like to try Lamictal instead, since that was the other medicine that he recommended. So I, very slowly, started taking Lamictal and building up to an acceptable level. 3 blood tests and 4 months later, I got to that acceptable level.
As we were doing the change he told me to try being on both for a while as Lamictal often offsets the side effects of Keppra. So I did. I tried it for a while and still felt off. I was more tired than normal and had problems thinking clearly - as I noticed about Tegretol after coming off of it. Exactly 1 month after starting the full dosage, he changed the way I take the medicine - from 1 Lamical in the morning and 1 at night (1x1) and 1x1 with Keppra, to .5x1.5 Lamictal and 1x1 Keppra.
Changing the dosing times made me feel more of the emotional effects that I had felt prior, so a few months into that dosage I switch myself to 1x1 Lamictal and .5x1.5 Keppra. The emotional side effects lessened, but they were/are still there.
We had set an appointment to talk today, at which I explained my situation - I changed my dosage again, and am still having seizure, but much less often (I'm at 23 days right now, which is near a record for 2014.) He mentioned trying to come off the Keppra and possibly trying Vimpat - or not adding Vimpat and just coming off of the Keppra. I agreed, stating that the reason that I went on the Lamictal was to come off of the Keppra, but I would rather not add anything else quite yet. I had actually thought about this while driving to the appointment... what is the next step?
So that's our current plan - I'm lessening the Keppra, v e r y s l o w l y. lowering by a half pill per day at one month intervals (.5x1 today, .5x.5 in 1 month, etc.) As always, this is a bit scary and a bit exciting. I'm looking forward to getting rid of some of the side effects but, as I did when coming off of the Tegretol, I'm a bit scared of having more seizures, or starting to have Tonic Clonic seizures again. The other problem is that this is, once again, a 4-month process, so I won't really know the outcome for quite some time.
I'll try to keep you all posted.
Almost about a year ago I went to my doctor telling him that I was having horrible emotional side effects from the Keppra that he put me on and said that I would like to try Lamictal instead, since that was the other medicine that he recommended. So I, very slowly, started taking Lamictal and building up to an acceptable level. 3 blood tests and 4 months later, I got to that acceptable level.
As we were doing the change he told me to try being on both for a while as Lamictal often offsets the side effects of Keppra. So I did. I tried it for a while and still felt off. I was more tired than normal and had problems thinking clearly - as I noticed about Tegretol after coming off of it. Exactly 1 month after starting the full dosage, he changed the way I take the medicine - from 1 Lamical in the morning and 1 at night (1x1) and 1x1 with Keppra, to .5x1.5 Lamictal and 1x1 Keppra.
Changing the dosing times made me feel more of the emotional effects that I had felt prior, so a few months into that dosage I switch myself to 1x1 Lamictal and .5x1.5 Keppra. The emotional side effects lessened, but they were/are still there.
We had set an appointment to talk today, at which I explained my situation - I changed my dosage again, and am still having seizure, but much less often (I'm at 23 days right now, which is near a record for 2014.) He mentioned trying to come off the Keppra and possibly trying Vimpat - or not adding Vimpat and just coming off of the Keppra. I agreed, stating that the reason that I went on the Lamictal was to come off of the Keppra, but I would rather not add anything else quite yet. I had actually thought about this while driving to the appointment... what is the next step?
So that's our current plan - I'm lessening the Keppra, v e r y s l o w l y. lowering by a half pill per day at one month intervals (.5x1 today, .5x.5 in 1 month, etc.) As always, this is a bit scary and a bit exciting. I'm looking forward to getting rid of some of the side effects but, as I did when coming off of the Tegretol, I'm a bit scared of having more seizures, or starting to have Tonic Clonic seizures again. The other problem is that this is, once again, a 4-month process, so I won't really know the outcome for quite some time.
I'll try to keep you all posted.
Monday, May 19, 2014
Mistakes
Everyone makes mistakes. It's a fact of life. Most people learn from those mistakes. They analyse the results of those mistakes, and change the outcome of similar situations that may occur in the future.
Generally, I am one of the best people around when it comes to this cycle of making mistakes, learning, and changing. But there is one place in my life that I have always failed to correct my mistakes. One thing that I've continually failed to change my behavior based on the outcome of previous encounters, and recently I have been thinking about one particular failure to adapt. I've had many chances to correct my mistake, and each time I just continued as if nothing had changed. But things do change, and sometimes you are given multiple chances for a reason. Unfortunately, those chances eventually stop coming, and that is when you truly recognize the consequences of your decisions.
My chances to correct my mistakes are finally coming to an end, and I don't know what to think about it. I am seeing things as they could have been, and am second guessing my actions every day. All along people told me that I was being stupid, and asking "why?" (or more like "why not?") and I never listened. I never had a good answer to "why?" and that should have been a clue to me that I was just being stupid, being stubborn. I've tried, so many times, to tell myself that I had a reason for my decision (or indecision, as it may be.) I always had a reason, but never a good reason. Now that I've run out of reasons, I don't know what to do except to accept things as they are and try not to let it get to me too much. I can't change things now, so even though I've run out of bad reasons to continue to make a bad decision, I guess it's time to just sit back and watch the party.
I know that people tend to hate ambiguous posts, and that some people think that it's a cry for attention. Truth is, I just need to get some things off of my chest. A lot of you have no idea what this post means, or what it refers to, but some of the people who are closest to me will understand. There is at least one person who will likely read this and will understand, and that person is the one who needs to understand, because that person never did understand my indecisiveness. Now I guess I'm the one who doesn't understand myself.
The great white buffalo.
Generally, I am one of the best people around when it comes to this cycle of making mistakes, learning, and changing. But there is one place in my life that I have always failed to correct my mistakes. One thing that I've continually failed to change my behavior based on the outcome of previous encounters, and recently I have been thinking about one particular failure to adapt. I've had many chances to correct my mistake, and each time I just continued as if nothing had changed. But things do change, and sometimes you are given multiple chances for a reason. Unfortunately, those chances eventually stop coming, and that is when you truly recognize the consequences of your decisions.
My chances to correct my mistakes are finally coming to an end, and I don't know what to think about it. I am seeing things as they could have been, and am second guessing my actions every day. All along people told me that I was being stupid, and asking "why?" (or more like "why not?") and I never listened. I never had a good answer to "why?" and that should have been a clue to me that I was just being stupid, being stubborn. I've tried, so many times, to tell myself that I had a reason for my decision (or indecision, as it may be.) I always had a reason, but never a good reason. Now that I've run out of reasons, I don't know what to do except to accept things as they are and try not to let it get to me too much. I can't change things now, so even though I've run out of bad reasons to continue to make a bad decision, I guess it's time to just sit back and watch the party.
I know that people tend to hate ambiguous posts, and that some people think that it's a cry for attention. Truth is, I just need to get some things off of my chest. A lot of you have no idea what this post means, or what it refers to, but some of the people who are closest to me will understand. There is at least one person who will likely read this and will understand, and that person is the one who needs to understand, because that person never did understand my indecisiveness. Now I guess I'm the one who doesn't understand myself.
The great white buffalo.
Wednesday, March 26, 2014
Helpless
Today is March 26th 2014. March 26th - Purple day. A day that I usually celebrate my epilepsy, spread the word about epilepsy, think of the people who I have met, and the good things that have come from the disorder that most people don't understand, or have no positive memories of.
Today was different though. Today I started to feel helpless.
For the first time in a long time, possibly ever, I am starting to feel comfortable in my own body. I'm getting back into shape and I am gaining confidence in myself that I never had. I feel proud of the things that I have accomplished - physical accomplishments, professional accomplishments, personal accomplishments.
But as I start to feel comfortable in my body, my body is falling apart. Not because I'm getting older. Not because I'm letting myself go, or have let myself go. My body is finally starting to fall apart because of my seizures. Because of the 34 partial seizures (or possibly more if I missed some) that I've had in the past 10 months.
My right calf is often hard to walk on. My right forearm actually hurt today (Wednesday) from a seizure that I had on Saturday. It was quite possibly the strongest partial that I've had to date. While it was happening, I tried to show a friend how I can stop my leg from shaking during these seizures... but I couldn't.
Not only was it immensely intense, but it was at a party. A party celebrating a 30th birthday. A party at which I knew nobody prior to that night except the host.
As the seizure was happening a handful of people sat there watching me, wondering what was going on, and surely feeling just as helpless as I was. They wanted to help me, I could see it in their faces, but they didn't know what to do. They didn't even know how to talk to me about it... but they did. After it was over and I got up to use the bathroom.
When I returned from the bathroom, they asked me "what happened? Are you alright?" And of course I told them the truth. "That was what's called a simple partial seizure." And as I expected, they continued to ask questions - what does that mean? Have you had them all your life? How often do they happen? Etc. One of them even said that she thought that it was just a muscle spasm, which is probably what I would have thought had I been in her position.
I have no problem explaining my seizures, talking about epilepsy, educating people... in fact normally I enjoy it. But this time it was a bit awkward. Trying to explain to a couple of people that I just met that night what they just witnessed... while I'm still in the seizure.
I knew that the seizure wasn't done when I heard my voice. I started explaining everything to them, but my speech was broken. My voice was almost like a scratched record. I was still breathing fairly heavily. I could barely look at them because I could feel my eyes doing whatever it is that they do during my seizures. But they still asked their questions, and I still answered. I powered through it as I have always done with everything in life.
The problem is - I'm getting sick of having to power through things. And for the first time ever, I can say that I have no control over the vow that I made to myself years ago... I am allowing my seizures to stop me from doing things. I'm trying not to let them control me, but I can't stop it. My leg won't let me do some things.
I'm not normally a runner, but I have been trying to run and I physically can't. Not because I am out of shape, not because my lung capacity isn't good enough, not because I lack the ambition, not because I don't have somewhere to run... in fact I have everything necessary. But my leg physically can't handle it because of the seizures. And it makes me feel helpless. It makes me feel like I want to cry. It makes me angry. It makes me feel defeated. It makes me feel a need to push harder... but I can't! Pushing harder would just make it worse. Which in turn makes all of those feelings even stronger.
For the first time ever, I feel helpless. I feel like no matter what I do I can't repair my body. No matter how hard I try to get stronger I just get weaker, or at best stay the same. For the first time ever I feel like my seizures are taking over my life, and it's getting hard to fight back. I'm trying my best to not give up. Trying to keep fighting no matter how hard it is. But I feel like I'm starting to lose the battle. I put on a strong face, but there are times that I'm dying inside despite the facade.
As always, I will keep going. I will keep pushing forward. I will keep doing whatever is necessary. But it's not easy. And I'm trying not to let it break me down.
Today was different though. Today I started to feel helpless.
For the first time in a long time, possibly ever, I am starting to feel comfortable in my own body. I'm getting back into shape and I am gaining confidence in myself that I never had. I feel proud of the things that I have accomplished - physical accomplishments, professional accomplishments, personal accomplishments.
But as I start to feel comfortable in my body, my body is falling apart. Not because I'm getting older. Not because I'm letting myself go, or have let myself go. My body is finally starting to fall apart because of my seizures. Because of the 34 partial seizures (or possibly more if I missed some) that I've had in the past 10 months.
My right calf is often hard to walk on. My right forearm actually hurt today (Wednesday) from a seizure that I had on Saturday. It was quite possibly the strongest partial that I've had to date. While it was happening, I tried to show a friend how I can stop my leg from shaking during these seizures... but I couldn't.
Not only was it immensely intense, but it was at a party. A party celebrating a 30th birthday. A party at which I knew nobody prior to that night except the host.
As the seizure was happening a handful of people sat there watching me, wondering what was going on, and surely feeling just as helpless as I was. They wanted to help me, I could see it in their faces, but they didn't know what to do. They didn't even know how to talk to me about it... but they did. After it was over and I got up to use the bathroom.
When I returned from the bathroom, they asked me "what happened? Are you alright?" And of course I told them the truth. "That was what's called a simple partial seizure." And as I expected, they continued to ask questions - what does that mean? Have you had them all your life? How often do they happen? Etc. One of them even said that she thought that it was just a muscle spasm, which is probably what I would have thought had I been in her position.
I have no problem explaining my seizures, talking about epilepsy, educating people... in fact normally I enjoy it. But this time it was a bit awkward. Trying to explain to a couple of people that I just met that night what they just witnessed... while I'm still in the seizure.
I knew that the seizure wasn't done when I heard my voice. I started explaining everything to them, but my speech was broken. My voice was almost like a scratched record. I was still breathing fairly heavily. I could barely look at them because I could feel my eyes doing whatever it is that they do during my seizures. But they still asked their questions, and I still answered. I powered through it as I have always done with everything in life.
The problem is - I'm getting sick of having to power through things. And for the first time ever, I can say that I have no control over the vow that I made to myself years ago... I am allowing my seizures to stop me from doing things. I'm trying not to let them control me, but I can't stop it. My leg won't let me do some things.
I'm not normally a runner, but I have been trying to run and I physically can't. Not because I am out of shape, not because my lung capacity isn't good enough, not because I lack the ambition, not because I don't have somewhere to run... in fact I have everything necessary. But my leg physically can't handle it because of the seizures. And it makes me feel helpless. It makes me feel like I want to cry. It makes me angry. It makes me feel defeated. It makes me feel a need to push harder... but I can't! Pushing harder would just make it worse. Which in turn makes all of those feelings even stronger.
For the first time ever, I feel helpless. I feel like no matter what I do I can't repair my body. No matter how hard I try to get stronger I just get weaker, or at best stay the same. For the first time ever I feel like my seizures are taking over my life, and it's getting hard to fight back. I'm trying my best to not give up. Trying to keep fighting no matter how hard it is. But I feel like I'm starting to lose the battle. I put on a strong face, but there are times that I'm dying inside despite the facade.
As always, I will keep going. I will keep pushing forward. I will keep doing whatever is necessary. But it's not easy. And I'm trying not to let it break me down.
Saturday, February 1, 2014
Evolutionary Theory with new DNA research findings
There has been a lot of stir in the scientific community about new research that suggests that memories may be passed down through DNA. They have mostly been testing things like fear - "That bird just dive-bombed me, and it hurt me when it hit me, so I'm afraid of birds now." Then the children, or grandchildren, of that person or animal is now also afraid of birds.
http://www.bbc.co.uk/news/health-25156510
But what if this memory retention applied for more than just our conscious memory and fears? What if this extended to things like memory of our surroundings? Memories of our struggles and our successes.
I'm not sure of his exact words, but part of Darwin's theory of evolution included random changes, or mutations, that are passed down from generation to generation. If DNA can pass down memories of events which cause fear, why can't it pass down memories of surroundings or difficulties that cause physical changes? These physical changes would no longer be random, they would be a decision made by our DNA which is fueled by knowledge and memories from that DNA.
Prior to recent history, where global travel is so simple, people have had light or dark skin depending on their geographical location. Their minds could be saying "There's a lot of sun here, and my skin keeps getting burned. Maybe I will be more protected if my skin is darker." and that causes the DNA to make the skin darker in the next generation. Then the next generation says "My skin is still getting burned! Maybe I need to keep making it darker, and maybe also make it thicker to be more resistant." and so on, until a good balance is found generations later.
On the other hand, someone in places like northern Canada, or Russia, or Alaska, which have a lot of snow, might be thinking the opposite. "There's a lot of snow here. If my skin, hair, and eyes were lighter I would be able to blend in to my surroundings more and would have an easier time hiding from all of these wolfs and such." So throughout the generations their skin becomes lighter, their hair approaches a blonde color, and their eyes become more like a blue color. All of which are lighter, and therefore harder to see in that environment.
Darwin's finches could have gone through a similar process. "I can't reach inside that flower, but if my beak were longer I could do it!"
There's also a lot of research that states that our subconscious mind is a lot more powerful than our conscious mind, and that our subconscious mind has more control over our actions than our conscious mind. So maybe our subconscious is passing these messages to the DNA without us even consciously thinking those thoughts.
When we reproduce, there may be two conflicting memories from the parents of the offspring. One says "It's sunny so I need to be darker" and the other says "There's a lot of snow so I need to blend in."
Bottom line, I think this new finding has a lot more impact than scientists currently realize. I'm no scientist, but I am very educated and have an uncanny ability to make links that others don't always see. I think this is a real possibility, and it would explain evolution even further.
http://www.bbc.co.uk/news/health-25156510
But what if this memory retention applied for more than just our conscious memory and fears? What if this extended to things like memory of our surroundings? Memories of our struggles and our successes.
I'm not sure of his exact words, but part of Darwin's theory of evolution included random changes, or mutations, that are passed down from generation to generation. If DNA can pass down memories of events which cause fear, why can't it pass down memories of surroundings or difficulties that cause physical changes? These physical changes would no longer be random, they would be a decision made by our DNA which is fueled by knowledge and memories from that DNA.
Prior to recent history, where global travel is so simple, people have had light or dark skin depending on their geographical location. Their minds could be saying "There's a lot of sun here, and my skin keeps getting burned. Maybe I will be more protected if my skin is darker." and that causes the DNA to make the skin darker in the next generation. Then the next generation says "My skin is still getting burned! Maybe I need to keep making it darker, and maybe also make it thicker to be more resistant." and so on, until a good balance is found generations later.
On the other hand, someone in places like northern Canada, or Russia, or Alaska, which have a lot of snow, might be thinking the opposite. "There's a lot of snow here. If my skin, hair, and eyes were lighter I would be able to blend in to my surroundings more and would have an easier time hiding from all of these wolfs and such." So throughout the generations their skin becomes lighter, their hair approaches a blonde color, and their eyes become more like a blue color. All of which are lighter, and therefore harder to see in that environment.
Darwin's finches could have gone through a similar process. "I can't reach inside that flower, but if my beak were longer I could do it!"
There's also a lot of research that states that our subconscious mind is a lot more powerful than our conscious mind, and that our subconscious mind has more control over our actions than our conscious mind. So maybe our subconscious is passing these messages to the DNA without us even consciously thinking those thoughts.
When we reproduce, there may be two conflicting memories from the parents of the offspring. One says "It's sunny so I need to be darker" and the other says "There's a lot of snow so I need to blend in."
Maybe, in the first generation, these two conflicting thoughts go back and forth until one wins, and the outcome is a child with darker skin, hair, and eyes. And then maybe when that second generation reproduces, the older memory surfaces with the new memory still there, and realizes, "Things were better when my skin was lighter, so let's try that again. But the dark hair helped, so let's keep the dark hair with the lighter skin."
Or maybe the conflict results in a compromise right from the beginning, resulting in darker skin and lighter hair on the second generation. Or maybe the first generation couple has multiple children, and the DNA in the first child says "Let's try darker", the second says "Let's try lighter", and the third says "Lighter hair, darker skin", and the fourth says "Darker hair lighter skin", and so on from conflicting memories, not from random chance.
Bottom line, I think this new finding has a lot more impact than scientists currently realize. I'm no scientist, but I am very educated and have an uncanny ability to make links that others don't always see. I think this is a real possibility, and it would explain evolution even further.
Monday, January 13, 2014
Defeat
My workouts are reminding me of a lot of the motivators that I had long ago, but have come to forget. Tonight's motivation again boils down to 1 word: defeat.
How? How is defeat a motivator? Simple: I won't be defeated. I know you're probably thinking "you can't lose? Everyone loses occasionally." I can lose, but I won't be defeated.
What's the difference? A loss means that you have temporary been bested by an opponent. Defeat is a permanent loss. But there are other ways that you can be defeated, not just loss. It can be from constant stress, or one intense stressor. It can be from belittlement, or from intimidation.
As with many other things, defeat can be physical, mental, emotional, or many other things. And just as I described with pain, the threat of defeat can bring you up to fight, or it can crush you. But I don't fall. I refuse.
WARNING: NERD ALERT!
I'm going to get my geek on here, and make some references to Dragonball Z. If you haven't seen it, then you have been wronged by the social stigma attached to cartoons and manga. (If you haven't seen it, I highly recommend watching it, at least until the end of the Frieza saga.)
Goku (from the Dragonball series) - mostly as he exists in Dragonball Z - is undefeatable. He has a spirit than cannot be broken. As a Saiyan, he is part of a race that become stronger each time their wounds heal. Unlike other Saiyans though, his spirit seems to become stronger every time too.
END OF NERD ALERT - for now. (There will still be references back to this.)
When someone threatens me physically, intellectually, emotionally... I recognize when I'm outmatched. Don't get me wrong, I'm a survivor. Being a survivor I don't just give up. I will give it my all until it has come to a point where I recognize that I am outmatched. But when the time comes that I make this realization, I withdraw. But not forever. I will be back.
Once I come to this realization I better myself. I do whatever I need to do until I can beat you. Then I come back later and I defeat you... except that I don't. I come back and prove to you that I can defeat you. And once I've made that point, I stop to let you recover before you're completely defeated - just as Goku would.
I'm a better person because of that. I know that nobody deserves to be defeated. Many people have tried to defeat me, so I know what it is like to feel defeated. I just don't know what it's like to actually be defeated.
I'm the same even with video games. "Game Over" doesn't mean that the game is over. (Unless, of course, I actually reached the end of the game.) When I die in a game and get "Game Over", it simply means that I need to get better.
But I do have a breaking point. Anyone who has seen Dragonball Z knows that there are some things that Goku does not stand for, and my list is about the same. There are a few things that will release a monster if you aren't careful. You will not harm the innocent or helpless. You will not hurt people just for fun and your own amusement... and above all else, you will not take someone/something that I love away from me, or hurt someone that I love.
At these points, I don't need to walk away to better myself before I take you down. The adrenalin kicks in and most people just back away, afraid of what I am capable of. But if someone was to step in at one of these moments, they would be defeated. Like Goku in his initial Super Saiyan mode, I have little to no regard for the people who created this monster. But (also like Goku) even in this state, you have to push even further for me to truly destroy you. I have mercy on even the worst offenders, until they show me no mercy.
Luckily that doesn't happen very often. And when it does, people are too afraid to actually engage.
The bottom line is that I can build up all of the times that I have felt defeated, and use those times to better myself. If you've bested me physically, I will go work out, run, stretch, etc. If you've bested me intellectually, I will educate myself about the topic at hand. If you've beaten me emotionally.... well, you should probably be careful. I will better myself in every way possible until I find your weakness. That one is the biggest driving factor around.
How? How is defeat a motivator? Simple: I won't be defeated. I know you're probably thinking "you can't lose? Everyone loses occasionally." I can lose, but I won't be defeated.
What's the difference? A loss means that you have temporary been bested by an opponent. Defeat is a permanent loss. But there are other ways that you can be defeated, not just loss. It can be from constant stress, or one intense stressor. It can be from belittlement, or from intimidation.
As with many other things, defeat can be physical, mental, emotional, or many other things. And just as I described with pain, the threat of defeat can bring you up to fight, or it can crush you. But I don't fall. I refuse.
WARNING: NERD ALERT!
I'm going to get my geek on here, and make some references to Dragonball Z. If you haven't seen it, then you have been wronged by the social stigma attached to cartoons and manga. (If you haven't seen it, I highly recommend watching it, at least until the end of the Frieza saga.)
Goku (from the Dragonball series) - mostly as he exists in Dragonball Z - is undefeatable. He has a spirit than cannot be broken. As a Saiyan, he is part of a race that become stronger each time their wounds heal. Unlike other Saiyans though, his spirit seems to become stronger every time too.
END OF NERD ALERT - for now. (There will still be references back to this.)
When someone threatens me physically, intellectually, emotionally... I recognize when I'm outmatched. Don't get me wrong, I'm a survivor. Being a survivor I don't just give up. I will give it my all until it has come to a point where I recognize that I am outmatched. But when the time comes that I make this realization, I withdraw. But not forever. I will be back.
Once I come to this realization I better myself. I do whatever I need to do until I can beat you. Then I come back later and I defeat you... except that I don't. I come back and prove to you that I can defeat you. And once I've made that point, I stop to let you recover before you're completely defeated - just as Goku would.
I'm a better person because of that. I know that nobody deserves to be defeated. Many people have tried to defeat me, so I know what it is like to feel defeated. I just don't know what it's like to actually be defeated.
I'm the same even with video games. "Game Over" doesn't mean that the game is over. (Unless, of course, I actually reached the end of the game.) When I die in a game and get "Game Over", it simply means that I need to get better.
But I do have a breaking point. Anyone who has seen Dragonball Z knows that there are some things that Goku does not stand for, and my list is about the same. There are a few things that will release a monster if you aren't careful. You will not harm the innocent or helpless. You will not hurt people just for fun and your own amusement... and above all else, you will not take someone/something that I love away from me, or hurt someone that I love.
At these points, I don't need to walk away to better myself before I take you down. The adrenalin kicks in and most people just back away, afraid of what I am capable of. But if someone was to step in at one of these moments, they would be defeated. Like Goku in his initial Super Saiyan mode, I have little to no regard for the people who created this monster. But (also like Goku) even in this state, you have to push even further for me to truly destroy you. I have mercy on even the worst offenders, until they show me no mercy.
Luckily that doesn't happen very often. And when it does, people are too afraid to actually engage.
The bottom line is that I can build up all of the times that I have felt defeated, and use those times to better myself. If you've bested me physically, I will go work out, run, stretch, etc. If you've bested me intellectually, I will educate myself about the topic at hand. If you've beaten me emotionally.... well, you should probably be careful. I will better myself in every way possible until I find your weakness. That one is the biggest driving factor around.
Thursday, January 9, 2014
Pain
Pain is the such a crazy thing. There's physical pain, emotional pain, and mental pain. All of those things can add up to one of two things: motivation or devastation. If you're a strong person, pain will motivate you beyond belief. Motivation to be better, motivation to feel better, motivation to do better. If you're not so strong, pain will bring you down and eventually destroy you. It adds up, leading to even more emotional and mental pain, which ends up in a downward spiral that is nearly impossible to escape.
Today was a painful day. Right from the get-go I was beating myself up with some old memories that I just couldn't get out of my head. Trying to push some things out of my head, and out of my past. I was fighting these thoughts all day. Already emotionally draining.
Then 9:30 or so comes around, and I feel my right calf tightening. I didn't feel this one coming, but I knew what was next. I tried to loosen it up, move my leg around and at least stop the pain for a bit. Then the tapping started. And it got quicker, and quicker, until it got hard to control. As usual, this uncontrolled tapping leads to pain and fatigue in my leg, and is starting to drain my energy.
Ed asks me to go install some software at someone's desk while this seizure is going on. He doesn't know that I'm having a seizure, but I am. Now I have to control my leg enough to walk, which just causes it to hurt even more. I'm physically exhausted, and my calf is killing me.
I get the install done, walk/limp back to my desk, and now I need to call someone and do a remote install of a printer. I'm on the phone, still mid-seizure, trying to give him instructions to get this remote session going. My mind is not quite working at 100%, because it's still seizing, so I'm slowly going through this process, forcing my mind to work enough to get through this. My slow thought process leads to slowly forming sentences, and therefor slow instructing.
My fingers aren't quite doing what I need them to do... they're hitting the wrong keys, double pressing keys, skipping letters, and for some reason I tend to reverse letters a lot when I type mid-seizure, which means I'm constantly backspacing and correcting mistakes. A half hour later, I get through what probably should have been a 10-minute or less job.
I sat there and waited out the rest of the seizure. After the leg stopped (almost 11:00) my head was still in a bit of a fog for about another hour, maybe more. Meanwhile, I'm internally debating a somewhat awkward decision that I'm going to be forced to make soon (which I can't go into much detail about) when someone comes to talk to me. This just inadvertently, and unknowingly, makes that decision even more awkward. Between pushing through the seizure and this awkward moment, suddenly I'm mentally exhausted as well.
Now I have a decision to make: am I going to let this push me forward, or is it going to push me down? Years ago it would have pushed me down, and I would have stayed down for quite some time. But being the person that I have come to be, there was no decision to be made. I not only let it push me forward, I forced it to push me forward. On my way home I listened to some of the most infuriating, most energetic, and most scream my head off music that I have. Suddenly, all of this pain has turned into pure energy. Energy fueled by hatred, confusion, neglect, despair, and any other negative feeling you could ever imagine.
I took all of this energy to the gym, and I ran. I ran until I couldn't run anymore. I pushed that painful, exhausted right calf to its breaking point. I pushed until there was nothing left to push. I left all of that pure negative energy on the track, and suddenly there's nothing left; no energy at all. But as the energy slowly returns, it's not negative energy. I've just overcome a huge obstacle, and it feels good.
The thing is, my leg still hurts; It hurts more now than it did before going to the gym. Those memories are still there, and they always will be. That decision still needs to be made, and it will remain that way for some time. But I no longer care. I left it all behind, at least for now. It's all back at the gym until I have the time and energy to fight each one of those things individually. And when I do that, that's when amazing things happen.
So next time you have a painful day, ask yourself one thing: am I going to let this bring me down, or is it going to push me forward? If you decide to let it push you forward, some of that pain may still be there (like my leg pain.) Let that remaining pain push you even more. Turn that pain into energy again tomorrow, and the next day, and the rest of the week. You'll find yourself climbing a mountain instead of being stuck in a downward spiral.
Today was a painful day. Right from the get-go I was beating myself up with some old memories that I just couldn't get out of my head. Trying to push some things out of my head, and out of my past. I was fighting these thoughts all day. Already emotionally draining.
Then 9:30 or so comes around, and I feel my right calf tightening. I didn't feel this one coming, but I knew what was next. I tried to loosen it up, move my leg around and at least stop the pain for a bit. Then the tapping started. And it got quicker, and quicker, until it got hard to control. As usual, this uncontrolled tapping leads to pain and fatigue in my leg, and is starting to drain my energy.
Ed asks me to go install some software at someone's desk while this seizure is going on. He doesn't know that I'm having a seizure, but I am. Now I have to control my leg enough to walk, which just causes it to hurt even more. I'm physically exhausted, and my calf is killing me.
I get the install done, walk/limp back to my desk, and now I need to call someone and do a remote install of a printer. I'm on the phone, still mid-seizure, trying to give him instructions to get this remote session going. My mind is not quite working at 100%, because it's still seizing, so I'm slowly going through this process, forcing my mind to work enough to get through this. My slow thought process leads to slowly forming sentences, and therefor slow instructing.
My fingers aren't quite doing what I need them to do... they're hitting the wrong keys, double pressing keys, skipping letters, and for some reason I tend to reverse letters a lot when I type mid-seizure, which means I'm constantly backspacing and correcting mistakes. A half hour later, I get through what probably should have been a 10-minute or less job.
I sat there and waited out the rest of the seizure. After the leg stopped (almost 11:00) my head was still in a bit of a fog for about another hour, maybe more. Meanwhile, I'm internally debating a somewhat awkward decision that I'm going to be forced to make soon (which I can't go into much detail about) when someone comes to talk to me. This just inadvertently, and unknowingly, makes that decision even more awkward. Between pushing through the seizure and this awkward moment, suddenly I'm mentally exhausted as well.
Now I have a decision to make: am I going to let this push me forward, or is it going to push me down? Years ago it would have pushed me down, and I would have stayed down for quite some time. But being the person that I have come to be, there was no decision to be made. I not only let it push me forward, I forced it to push me forward. On my way home I listened to some of the most infuriating, most energetic, and most scream my head off music that I have. Suddenly, all of this pain has turned into pure energy. Energy fueled by hatred, confusion, neglect, despair, and any other negative feeling you could ever imagine.
I took all of this energy to the gym, and I ran. I ran until I couldn't run anymore. I pushed that painful, exhausted right calf to its breaking point. I pushed until there was nothing left to push. I left all of that pure negative energy on the track, and suddenly there's nothing left; no energy at all. But as the energy slowly returns, it's not negative energy. I've just overcome a huge obstacle, and it feels good.
The thing is, my leg still hurts; It hurts more now than it did before going to the gym. Those memories are still there, and they always will be. That decision still needs to be made, and it will remain that way for some time. But I no longer care. I left it all behind, at least for now. It's all back at the gym until I have the time and energy to fight each one of those things individually. And when I do that, that's when amazing things happen.
So next time you have a painful day, ask yourself one thing: am I going to let this bring me down, or is it going to push me forward? If you decide to let it push you forward, some of that pain may still be there (like my leg pain.) Let that remaining pain push you even more. Turn that pain into energy again tomorrow, and the next day, and the rest of the week. You'll find yourself climbing a mountain instead of being stuck in a downward spiral.
Sunday, December 29, 2013
More Seizures
Yesterday I had my first seizure in 25 days. Then another one today, and I'll probably have at least one more by Wednesday. That seems to be how they work; They tend to come in groups.
I've gotten to the point that I can predict some of these seizures days in advance. I could feel this one building up for about 3-4 days before it happened. I don't know how to explain it, but I just knew it was coming and was simply waiting for it. I can't predict it to a specific time or even a specific day yet, I just know that it's imminent.
It was probably around Christmas, maybe the day after, that I started just waiting for it. It was only a matter of time before it came, and I was doing my best to figure out what I could do to prevent it. I'm still working on that part. I haven't been to the gym since Monday, but I don't know if that helped or hurt. I tried getting some extra sleep, but again I'm not sure if that had any effect.
I have most, if not all, of my seizure since May logged in 3 different places - my Google calendar, an app on my phone, and an excel spreadsheet where I can try to follow trends.
According to my spreadsheet the longest that I have been without a seizure, since I started the log, is 35 days, average days between seizures is 10.76, most of my seizures happen on Mondays and Fridays, and there have been 5 times that I've had seizures on back-to-back days.
I don't know what else to track at this point. I'm trying to make an excel formula to determine the max number of consecutive days in a row with a seizure (right now the most is 2 days in a row, but that could change) but I can't figure out how to format the formula. I found some formulas online that claim to work, but they don't give me any results (not even wrong results.) I can't really find an average seizure duration because most of the time it's basically impossible for me to find an exact beginning and end to the seizures, so my time is not very exact.
I'm still on both Keppra and Lamictal; I'm still feeling some of the side effects from the Keppra (emotional side effects,) I'm starting to feel some side effects from the Lamictal that are similar to what I felt with Tegretol (mental slowness) and I'm still having seizures, so I really don't know where to go next. I need to talk to the doc again and see if we have any other options. :-(
I'm so sick of playing with my meds, and trying to figure out if what I'm feeling is because of side effects of medication or because of some lifestyle change, and getting blood taken almost monthly, and feeling overall crazy because my body chemistry is constantly changing. Part of me wants to go without the meds for a while, since I'm still having seizures even with the meds, but part of me also says that it has been almost 9 years since my last tonic clonic, and that I might have one if I come off completely. I'm terrified of the thought of having more tonic clonic seizures, and what the possible consequences could be - physically, mentally, socially, financially... it could change everything.
I'm just straight up torn right now, and I'm starting to lose it. I've been doing this whole medicine thing for about a year and a half now, and it's starting to wear me down.
I've gotten to the point that I can predict some of these seizures days in advance. I could feel this one building up for about 3-4 days before it happened. I don't know how to explain it, but I just knew it was coming and was simply waiting for it. I can't predict it to a specific time or even a specific day yet, I just know that it's imminent.
It was probably around Christmas, maybe the day after, that I started just waiting for it. It was only a matter of time before it came, and I was doing my best to figure out what I could do to prevent it. I'm still working on that part. I haven't been to the gym since Monday, but I don't know if that helped or hurt. I tried getting some extra sleep, but again I'm not sure if that had any effect.
I have most, if not all, of my seizure since May logged in 3 different places - my Google calendar, an app on my phone, and an excel spreadsheet where I can try to follow trends.
According to my spreadsheet the longest that I have been without a seizure, since I started the log, is 35 days, average days between seizures is 10.76, most of my seizures happen on Mondays and Fridays, and there have been 5 times that I've had seizures on back-to-back days.
I don't know what else to track at this point. I'm trying to make an excel formula to determine the max number of consecutive days in a row with a seizure (right now the most is 2 days in a row, but that could change) but I can't figure out how to format the formula. I found some formulas online that claim to work, but they don't give me any results (not even wrong results.) I can't really find an average seizure duration because most of the time it's basically impossible for me to find an exact beginning and end to the seizures, so my time is not very exact.
I'm still on both Keppra and Lamictal; I'm still feeling some of the side effects from the Keppra (emotional side effects,) I'm starting to feel some side effects from the Lamictal that are similar to what I felt with Tegretol (mental slowness) and I'm still having seizures, so I really don't know where to go next. I need to talk to the doc again and see if we have any other options. :-(
I'm so sick of playing with my meds, and trying to figure out if what I'm feeling is because of side effects of medication or because of some lifestyle change, and getting blood taken almost monthly, and feeling overall crazy because my body chemistry is constantly changing. Part of me wants to go without the meds for a while, since I'm still having seizures even with the meds, but part of me also says that it has been almost 9 years since my last tonic clonic, and that I might have one if I come off completely. I'm terrified of the thought of having more tonic clonic seizures, and what the possible consequences could be - physically, mentally, socially, financially... it could change everything.
I'm just straight up torn right now, and I'm starting to lose it. I've been doing this whole medicine thing for about a year and a half now, and it's starting to wear me down.
Saturday, December 14, 2013
Frozen Frontier!
2 out of 10 isn't bad right? OK, it's terrible; Of the 10 tickets purchased, only 2 were used tonight - mine and Matt's - and that's because we drove together. But I don't blame the people who didn't show, there was so much snow that even I barely made it there.
For those who don't know what the heck I'm talking about, RIT played an outdoor hockey game tonight against our rivals, Niagara University. It was around 16 degrees for most of the game and snowing like crazy.
Anyway, we weren't too cold because we were in so many layers. I had on a pair of "warm up" pants from cheerleading under my normal pants, 1 pair of regular socks, 2 pairs of wool socks, winter boots, a wife beater, a t-shirt, my warm up jacket from cheer, 2 hoodies, a ski mask and gloves... and I had my leather jacket, another ski mask, another pair of warm up pants, and 2 blankets just in case. The blankets came in handy. A girl a few rows above us used one to cover her feet, we wrapped ourselves in them for a while, and used them on our feet for a while as well. But of course, I left the hand and feet warming packets at home. Throughout the game, only our finger and toes really got cold. Other than that we were both pretty toasty warm.
Our tickets were for seats in the section next to the corner crew (if you don't know about the corner crew, Google "RIT Corner Crew") but there were empty seats in the crew's section, so we joined the crew as we usually do. There was still a lot of yelling, screaming, cheering, chanting, and as always a lot of "YOU SUCK!" from the crew. Unfortunately, the pep band wasn't there, and the crew isn't quite the same without them. I heard they were at the women's game, and some of the instruments actually broke because it was so cold.
Oh yeah, and one of the guys from the crew was throwing out foam (I think it's foam at least) RIT hockey pucks for answering RIT Hockey trivia, and a few random puck throws as well. Matt and I both got pucks. (Matt's was a random throw, mine was for knowing that RIT Hockey went D1 in 2005.)
Overall it was a fun game to watch, even though it ended up tied at 2 - which kinda ends our 5 game win streak, AND Niagara's 5 game losing streak. I guess Rotolo is technically still undefeated in goal too, so that's cool. I got a few pictures too; I'm not sure how they came out yet but I'll post the good ones soon. It was a good time, and I'm sure it's something that I won't soon forget!
For those who don't know what the heck I'm talking about, RIT played an outdoor hockey game tonight against our rivals, Niagara University. It was around 16 degrees for most of the game and snowing like crazy.
Anyway, we weren't too cold because we were in so many layers. I had on a pair of "warm up" pants from cheerleading under my normal pants, 1 pair of regular socks, 2 pairs of wool socks, winter boots, a wife beater, a t-shirt, my warm up jacket from cheer, 2 hoodies, a ski mask and gloves... and I had my leather jacket, another ski mask, another pair of warm up pants, and 2 blankets just in case. The blankets came in handy. A girl a few rows above us used one to cover her feet, we wrapped ourselves in them for a while, and used them on our feet for a while as well. But of course, I left the hand and feet warming packets at home. Throughout the game, only our finger and toes really got cold. Other than that we were both pretty toasty warm.
Our tickets were for seats in the section next to the corner crew (if you don't know about the corner crew, Google "RIT Corner Crew") but there were empty seats in the crew's section, so we joined the crew as we usually do. There was still a lot of yelling, screaming, cheering, chanting, and as always a lot of "YOU SUCK!" from the crew. Unfortunately, the pep band wasn't there, and the crew isn't quite the same without them. I heard they were at the women's game, and some of the instruments actually broke because it was so cold.
Oh yeah, and one of the guys from the crew was throwing out foam (I think it's foam at least) RIT hockey pucks for answering RIT Hockey trivia, and a few random puck throws as well. Matt and I both got pucks. (Matt's was a random throw, mine was for knowing that RIT Hockey went D1 in 2005.)
Overall it was a fun game to watch, even though it ended up tied at 2 - which kinda ends our 5 game win streak, AND Niagara's 5 game losing streak. I guess Rotolo is technically still undefeated in goal too, so that's cool. I got a few pictures too; I'm not sure how they came out yet but I'll post the good ones soon. It was a good time, and I'm sure it's something that I won't soon forget!
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