I suppose I have not written in some time, and there may be people who I don't talk to on a regular basis who might be curious as to what is going on (or maybe you're just bored and thought you would check out my blog - that works for me too). Warning: the post might be somewhat depressing at points, but I'll try to add in some light topics too :)
First, something really important to me. Please keep my mom in your prayers. She has been dealing with lung problems for quite some time. She used to smoke, though smoking isn't what caused these issues - just exasperated them (remember they didn't know as much about how terrible smoking was back thirty years ago like they do now). She has been quit for quite some time, but there were other underlying issues that she didn't know about until later. She has something called pseudomonas, and it's a type of bacteria that has infected her lungs. She gets sick with pneumonia frequently and has been in the hospital countless times to receive intensive care to bring her infections under control. When I was home a couple of weeks ago she could hardly walk for longer than 5 minutes without having to stop because she was out of breath. She was scared she would have to be admitted again, and she did go to the doctor, and she was admitted, and was taking vacation time for a week to get better. It didn't get better the way it should have, so she went back to the hospital shortly after, and they admitted her again. Now they said she needs to get a lung transplant because it's progressing quickly, and they need to do it before her condition gets worse. The average life expectancy after a lung transplant is five years, though that's only AVERAGE - there ARE plenty of people who live much longer than that. She is still fairly young - only 50, and once the lung issue is taken care of, she will be much better off. PLEASE keep her in your prayers that a) she can get a transplant/funding for the transplant quickly (these things aren't cheap), and b) that her body takes the transplant well.
Second, I am training for marathon number two! The Philadelphia marathon in November. I am doing it for charity - the Epilepsy Therapy Project. I've been posting all over Facebook about this, but I think most people tend to ignore those types of posts (plus I'm aware it's still a decent time away), SO, if you want to donate - even just a little - my goal is 1,000 dollars. I'm partially there (about 15%), but not as far as I'd like to be! If I had known about the transplant before I committed to running for this charity, I probably would have chosen to run for that. But, I didn't know until a couple of days ago, and have all ready committed to this :) Don't be surprised to see me posting about that as well though... IF you would like to donate, please click on the link below:
https://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/individual.do?participationRef=3917.0.286558349
So why would you want to donate to this cause? And why would I choose to do this? Well, epilepsy awareness for one thing. I have learned SO much that I didn't know about prior to my diagnosis and doing research. Most people think epilepsy is some type of weird disease where people randomly collapse and start shaking. But there's much more to it than that. Did you know that there is something called SUDEP - Sudden Death in Epilepsy. Yeah, neither did I, and it scared me enough to make sure I take my medications, regardless of the side effects (which suck). Nobody even told me about it after my first seizure because they thought it was induced by pills. I was just kind of blown off. That's why it's important for people to have epilepsy under control. If you want to learn more about it the link below is actually from the organization I'm doing the marathon for:
http://www.epilepsy.com/EPILEPSY/sudep_epilepsy
It's also a progressive condition, something else I didn't know. It explains why when I had my very first seizure a couple of years ago I hardly ever had auras (weird feelings/sensations/etc.) that I had prior to my first Tonic-Clonic seizure, and then in the past year or so they've gotten more and more frequent. Auras are actually partial seizures (meaning, they only take place in one part of the brain), and those partial seizures affect things like memory/speech/etc. So for those of you whose names I can't remember, well, now I have an excuse :) I have mostly partial seizures that sometimes generalize (affect the entire brain). Generalized seizures are what most people think of when they think of seizures. You lose consciousness, might fall to the ground, get stiff, shake, etc. etc. For more information on the TYPES of seizures, click here:
http://www.epilepsy.com/EPILEPSY/Types_seizures
That website is a GREAT resource for anyone who has family members dealing with epilepsy, or people who are just curious. Now, here's what these charity organizations help to do. They help fund research into epilepsy to develop different types of treatment and raise awareness. Let me tell you, the side effects suck. I'm only on one medication right now called Keppra. It's sometimes used in the treatment of bipolar disorder as well, which is kind of interesting because it can have the opposite affect on mood control on quite a few people. Keppra is good in a few ways: it doesn't put you in the same type of brain fog that some of the others do, and if you're a woman who wants to get pregnant, it's one of the better ones that won't really affect the baby. However, the moods. Oh, the moods. Some of you who are my Facebook friends will remember that when all this happened I was posting some depressing statuses on Facebook. Part of it was situational. Part of it was because of the medication. Keppra can make someone cry at the drop of a hat, or might make someone get angry quickly.
Fortunately, I've sort of adjusted to the medication, so it isn't so bad anymore. But now they want to put me on another one because my partial seizures aren't completely under control. No, I haven't lost consciousness and started shaking on the ground anytime since April, but I still get those auras I was talking about. As my neurologist explained, once we get rid of the partial seizures, they won't have a chance to generalize. I don't mind the partial seizures. They actually feel kind of cool sometimes (like being in a dream), but knowing that they can lead to other problems, I need them to be under control. While I don't mind the partial seizures, I really don't like not being able to drive for six months. This other medication they want to put me on has other side effects (though more mild than some of the others). Rashes, for one... Sometimes these rashes can be fatal. That freaks me out. There are other medications that cause huge amounts of weight gain (Depakote), and cause issues with thinking. An example of that is Topomax, which some people call "dopemax" because people feel like they're on dope. That one makes people lose a ton of weight and all they want to do is sleep. If you meet someone with epilepsy who seems like they aren't that smart, a lot of it probably has to do with the medication that they are taking. Just keep that in mind!
The good news is that sometimes these medications can reverse the damage that epilepsy does to the brain. Without the research they've done, people wouldn't know this. Hell, I wish my first doctors would have done this research and kept me on medication for longer than two months, because I don't think I'd be having these issues now if they had (keep in mind, medication controls seizures, so it helps prevent the condition from progressing - at least most of the time). My current neurologist really didn't understand why they took me off in the first place - his words were "I really don't understand what their thought process was." And the one who I saw in Virginia told me those pills wouldn't have caused seizures unless there was an underlying problem.
Anyways, if you have read this far - congratulations :) I wouldn't have expected you to do that unless you're interested in this topic.
Beyond the topic of the health implications of epilepsy... Right now, I've just been dealing with tests/etc. I have an MRI for next week to look at my brain (sometimes epilepsy can be caused by things like tumors), and lots of other fun stuff :) I'm also applying to graduate school. I feel as if my dreams to pursue my Ph.D. in psychology are going to be kept on hold, BUT, I'm still applying for my Master's in Health Administration at a local college (Utica College - an off-shoot of Syracuse University). I'll be doing online courses, but I'm close enough that if I wanted to head down there and use the library, I could do that. Of course, I need to be able to drive to do that, but HOPEFULLY by the end of October I will be able to drive again. I THOUGHT I'd be able to drive by the end of THIS month, because Oregon state law (where I have my driver's license) is three months, but my neurologist said because New York law is six months, I have to wait. So disappointing. Oh well. The positive to my current situation is that I'm not really working. That actually sucks, but I'll be able to do full-time school work for at least a couple more months while I sit in waiting. I'll also be able to do internships. If I want to get into the health care field, I can walk across the street to the clinic and help out over there (according to one of the civilians here helping with transitioning soldiers). I want to volunteer as well, but again, transportation might be an issue there, unless I can find someone else who wants to volunteer with me :)
So, this is life for me right now. I know that was a long entry - lots going on right now! Now I need to do my long run for the week if I'm going to get back into marathon shape ;) It will only be ten miles, but it's been since April at my first marathon since I've run that far!
Love,
Nina
First, something really important to me. Please keep my mom in your prayers. She has been dealing with lung problems for quite some time. She used to smoke, though smoking isn't what caused these issues - just exasperated them (remember they didn't know as much about how terrible smoking was back thirty years ago like they do now). She has been quit for quite some time, but there were other underlying issues that she didn't know about until later. She has something called pseudomonas, and it's a type of bacteria that has infected her lungs. She gets sick with pneumonia frequently and has been in the hospital countless times to receive intensive care to bring her infections under control. When I was home a couple of weeks ago she could hardly walk for longer than 5 minutes without having to stop because she was out of breath. She was scared she would have to be admitted again, and she did go to the doctor, and she was admitted, and was taking vacation time for a week to get better. It didn't get better the way it should have, so she went back to the hospital shortly after, and they admitted her again. Now they said she needs to get a lung transplant because it's progressing quickly, and they need to do it before her condition gets worse. The average life expectancy after a lung transplant is five years, though that's only AVERAGE - there ARE plenty of people who live much longer than that. She is still fairly young - only 50, and once the lung issue is taken care of, she will be much better off. PLEASE keep her in your prayers that a) she can get a transplant/funding for the transplant quickly (these things aren't cheap), and b) that her body takes the transplant well.
Second, I am training for marathon number two! The Philadelphia marathon in November. I am doing it for charity - the Epilepsy Therapy Project. I've been posting all over Facebook about this, but I think most people tend to ignore those types of posts (plus I'm aware it's still a decent time away), SO, if you want to donate - even just a little - my goal is 1,000 dollars. I'm partially there (about 15%), but not as far as I'd like to be! If I had known about the transplant before I committed to running for this charity, I probably would have chosen to run for that. But, I didn't know until a couple of days ago, and have all ready committed to this :) Don't be surprised to see me posting about that as well though... IF you would like to donate, please click on the link below:
https://epilepsytherapyproject.myetap.org/fundraiser/2012PHLMarathon/individual.do?participationRef=3917.0.286558349
So why would you want to donate to this cause? And why would I choose to do this? Well, epilepsy awareness for one thing. I have learned SO much that I didn't know about prior to my diagnosis and doing research. Most people think epilepsy is some type of weird disease where people randomly collapse and start shaking. But there's much more to it than that. Did you know that there is something called SUDEP - Sudden Death in Epilepsy. Yeah, neither did I, and it scared me enough to make sure I take my medications, regardless of the side effects (which suck). Nobody even told me about it after my first seizure because they thought it was induced by pills. I was just kind of blown off. That's why it's important for people to have epilepsy under control. If you want to learn more about it the link below is actually from the organization I'm doing the marathon for:
http://www.epilepsy.com/EPILEPSY/sudep_epilepsy
It's also a progressive condition, something else I didn't know. It explains why when I had my very first seizure a couple of years ago I hardly ever had auras (weird feelings/sensations/etc.) that I had prior to my first Tonic-Clonic seizure, and then in the past year or so they've gotten more and more frequent. Auras are actually partial seizures (meaning, they only take place in one part of the brain), and those partial seizures affect things like memory/speech/etc. So for those of you whose names I can't remember, well, now I have an excuse :) I have mostly partial seizures that sometimes generalize (affect the entire brain). Generalized seizures are what most people think of when they think of seizures. You lose consciousness, might fall to the ground, get stiff, shake, etc. etc. For more information on the TYPES of seizures, click here:
http://www.epilepsy.com/EPILEPSY/Types_seizures
That website is a GREAT resource for anyone who has family members dealing with epilepsy, or people who are just curious. Now, here's what these charity organizations help to do. They help fund research into epilepsy to develop different types of treatment and raise awareness. Let me tell you, the side effects suck. I'm only on one medication right now called Keppra. It's sometimes used in the treatment of bipolar disorder as well, which is kind of interesting because it can have the opposite affect on mood control on quite a few people. Keppra is good in a few ways: it doesn't put you in the same type of brain fog that some of the others do, and if you're a woman who wants to get pregnant, it's one of the better ones that won't really affect the baby. However, the moods. Oh, the moods. Some of you who are my Facebook friends will remember that when all this happened I was posting some depressing statuses on Facebook. Part of it was situational. Part of it was because of the medication. Keppra can make someone cry at the drop of a hat, or might make someone get angry quickly.
Fortunately, I've sort of adjusted to the medication, so it isn't so bad anymore. But now they want to put me on another one because my partial seizures aren't completely under control. No, I haven't lost consciousness and started shaking on the ground anytime since April, but I still get those auras I was talking about. As my neurologist explained, once we get rid of the partial seizures, they won't have a chance to generalize. I don't mind the partial seizures. They actually feel kind of cool sometimes (like being in a dream), but knowing that they can lead to other problems, I need them to be under control. While I don't mind the partial seizures, I really don't like not being able to drive for six months. This other medication they want to put me on has other side effects (though more mild than some of the others). Rashes, for one... Sometimes these rashes can be fatal. That freaks me out. There are other medications that cause huge amounts of weight gain (Depakote), and cause issues with thinking. An example of that is Topomax, which some people call "dopemax" because people feel like they're on dope. That one makes people lose a ton of weight and all they want to do is sleep. If you meet someone with epilepsy who seems like they aren't that smart, a lot of it probably has to do with the medication that they are taking. Just keep that in mind!
The good news is that sometimes these medications can reverse the damage that epilepsy does to the brain. Without the research they've done, people wouldn't know this. Hell, I wish my first doctors would have done this research and kept me on medication for longer than two months, because I don't think I'd be having these issues now if they had (keep in mind, medication controls seizures, so it helps prevent the condition from progressing - at least most of the time). My current neurologist really didn't understand why they took me off in the first place - his words were "I really don't understand what their thought process was." And the one who I saw in Virginia told me those pills wouldn't have caused seizures unless there was an underlying problem.
Anyways, if you have read this far - congratulations :) I wouldn't have expected you to do that unless you're interested in this topic.
Beyond the topic of the health implications of epilepsy... Right now, I've just been dealing with tests/etc. I have an MRI for next week to look at my brain (sometimes epilepsy can be caused by things like tumors), and lots of other fun stuff :) I'm also applying to graduate school. I feel as if my dreams to pursue my Ph.D. in psychology are going to be kept on hold, BUT, I'm still applying for my Master's in Health Administration at a local college (Utica College - an off-shoot of Syracuse University). I'll be doing online courses, but I'm close enough that if I wanted to head down there and use the library, I could do that. Of course, I need to be able to drive to do that, but HOPEFULLY by the end of October I will be able to drive again. I THOUGHT I'd be able to drive by the end of THIS month, because Oregon state law (where I have my driver's license) is three months, but my neurologist said because New York law is six months, I have to wait. So disappointing. Oh well. The positive to my current situation is that I'm not really working. That actually sucks, but I'll be able to do full-time school work for at least a couple more months while I sit in waiting. I'll also be able to do internships. If I want to get into the health care field, I can walk across the street to the clinic and help out over there (according to one of the civilians here helping with transitioning soldiers). I want to volunteer as well, but again, transportation might be an issue there, unless I can find someone else who wants to volunteer with me :)
So, this is life for me right now. I know that was a long entry - lots going on right now! Now I need to do my long run for the week if I'm going to get back into marathon shape ;) It will only be ten miles, but it's been since April at my first marathon since I've run that far!
Love,
Nina
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