Despite my posts that display anxiety and frustration, I am thankful for what I have. I know that my situation could be MUCH worse. I have been reading blogs that describe a life of uncontrollable seizures. That is not me. But, we all have different outlets. This is mine. I am trying to adjust the best way I can without totally losing my mind.
I have a list of folks who have been so helpful. They know who they are. And, I will be forever grateful.
Monday, April 18, 2011
More Diagnostic Tests
I really thought I was finished with the diagnostic tests. Not so much.
I called my Doc today to report a possible reaction to the new medication. I am fairly disappointed in this development. I have been on the new med for almost 2 weeks. I was really hoping to be able to switch and ditch the nasty side effects of the other drug. But, that is not the case. I woke up with a rash on both feet. It isn't bad, but the Doc told me that if I have any signs of a skin rash to immediately stop the medication and call him. This medication can lead to some serious illnesses if there is a reaction. I prefer NOT to have any issues with the title of necro-. I will continue the 500mg of Keppra XR and discontinue the Lamictal. Bummer. But, good that I won't have to worry about the skin on my feet dying. (Dramatic appeal, but still true.)
While on the phone with the nurse, I discovered that her concern was more for another diagnostic test than to deal with this reaction. Apparently, another Doc in the practice reviewed my other tests and wants to have me do an ambulatory EEG. I also learned that the other Doc is more of the Epilepsy specialist. Question: Why didn't I see him first? Or, at least on the last visit? I mean, it was part of my initial visit when I told them I had Epilepsy as a child.
Anyhow, this AEEG did not bother me earlier. But, now that I have a few minutes to think, I find this somewhat unsettling. I also Googled images of this. Not good. So, basically I will go in at 11am on the selected date for them to hook me up. And, by "hook me up" I mean they will attach 16-32 electrodes to my head to record my brainwaves for 48 hours. I do not get to shower. I also cannot chew gum or eat anything crunchy. Oh, and no scratching the electrodes. One more, I can't let anything bump me. Riiiight. I have a 2 1/2 year old. I can forsee 48 hours of hell in my future. I better bring out the good deodorant. Although, logging every moment of my day's activities will be amazing. I have been thinking that maybe I should have Dominic go spend the night with Debbie or maybe I should go stay with my Mom. But, I think it is best to have that thing record my regular, daily life.
Of course, there are those folks who have bad experiences with things. And, those are the ones we read about on the internet. Doc's hate us internet self-diagnosers. Sorry, Doc. It is what it is. With the way healthcare is, we are forced to get our info from other sources. It isn't like I can call up my Doc and ask him myself. It isn't like I can totally trust his nurse (who has proven that she isn't all that responsible for relaying the correct info) to relay important info. I sometimes wonder if healthcare employees are so overworked that they just become numb and complacent? My brain may not be all that important to them. Telling me about one drug, when I actually take another, may not be a big deal to them. But, it is to me...it is to my child. And, THAT is what has me a little freaked out (and kinda frustrated) about all of this.
This "issue" has caused dramatic changes in our lives. It is not easy for us. In fact, it is quite difficult for all three of us. We are all making sacrifices right now. And, we try so very hard to make the biggest sacrifice so that our child does not have to sacrifice his time as a child to deal with his Mother's "issues." But, he is.
I can tell you this. When I am able to drive again, I will be sure to seek out those who have these issues too. A couple of hours out of my day once in while could make the biggest difference to someone and his/her family. I think about those people who have been there to help us. It is hard to accept help. It really is. But, it is much harder to ask for it.
I am thankful for people out there like, Glenn Fenster. He is cycling this country to raise awareness. AMAZING. Check out his Facebook page:
He is a hero to all of us.
http://www.facebook.com/group.php?gid=9505154026
I called my Doc today to report a possible reaction to the new medication. I am fairly disappointed in this development. I have been on the new med for almost 2 weeks. I was really hoping to be able to switch and ditch the nasty side effects of the other drug. But, that is not the case. I woke up with a rash on both feet. It isn't bad, but the Doc told me that if I have any signs of a skin rash to immediately stop the medication and call him. This medication can lead to some serious illnesses if there is a reaction. I prefer NOT to have any issues with the title of necro-. I will continue the 500mg of Keppra XR and discontinue the Lamictal. Bummer. But, good that I won't have to worry about the skin on my feet dying. (Dramatic appeal, but still true.)
While on the phone with the nurse, I discovered that her concern was more for another diagnostic test than to deal with this reaction. Apparently, another Doc in the practice reviewed my other tests and wants to have me do an ambulatory EEG. I also learned that the other Doc is more of the Epilepsy specialist. Question: Why didn't I see him first? Or, at least on the last visit? I mean, it was part of my initial visit when I told them I had Epilepsy as a child.
Anyhow, this AEEG did not bother me earlier. But, now that I have a few minutes to think, I find this somewhat unsettling. I also Googled images of this. Not good. So, basically I will go in at 11am on the selected date for them to hook me up. And, by "hook me up" I mean they will attach 16-32 electrodes to my head to record my brainwaves for 48 hours. I do not get to shower. I also cannot chew gum or eat anything crunchy. Oh, and no scratching the electrodes. One more, I can't let anything bump me. Riiiight. I have a 2 1/2 year old. I can forsee 48 hours of hell in my future. I better bring out the good deodorant. Although, logging every moment of my day's activities will be amazing. I have been thinking that maybe I should have Dominic go spend the night with Debbie or maybe I should go stay with my Mom. But, I think it is best to have that thing record my regular, daily life.
Of course, there are those folks who have bad experiences with things. And, those are the ones we read about on the internet. Doc's hate us internet self-diagnosers. Sorry, Doc. It is what it is. With the way healthcare is, we are forced to get our info from other sources. It isn't like I can call up my Doc and ask him myself. It isn't like I can totally trust his nurse (who has proven that she isn't all that responsible for relaying the correct info) to relay important info. I sometimes wonder if healthcare employees are so overworked that they just become numb and complacent? My brain may not be all that important to them. Telling me about one drug, when I actually take another, may not be a big deal to them. But, it is to me...it is to my child. And, THAT is what has me a little freaked out (and kinda frustrated) about all of this.
This "issue" has caused dramatic changes in our lives. It is not easy for us. In fact, it is quite difficult for all three of us. We are all making sacrifices right now. And, we try so very hard to make the biggest sacrifice so that our child does not have to sacrifice his time as a child to deal with his Mother's "issues." But, he is.
I can tell you this. When I am able to drive again, I will be sure to seek out those who have these issues too. A couple of hours out of my day once in while could make the biggest difference to someone and his/her family. I think about those people who have been there to help us. It is hard to accept help. It really is. But, it is much harder to ask for it.
I am thankful for people out there like, Glenn Fenster. He is cycling this country to raise awareness. AMAZING. Check out his Facebook page:
He is a hero to all of us.
http://www.facebook.com/group.php?gid=9505154026
Saturday, April 9, 2011
Irritable Activity
I had my follow-up appointment this week for all of the diagnostic tests and to review medication. To recap, the head CT and MRI were normal. The EEG, however, was not. I expected this. Epilepsy is a life-long issue. It can become a non-issue for many people. And, it was for me for a very long time. Now that it is back, life will be very different for a while.
An EEG records electrical activity in the brain. The Doc wants to see steady waves. My Doc saw plenty of steady waves, but he also saw spikes. I asked him when the spikes were seen in the EEG. He didn't give me straight answer, but it made me believe that the spikes didn't only occur when my brain was provoked by hyperventilation and a strobe. He actually said, "there is some irritable activity in your temporal and parietal lobes." I honestly laughed out loud when he said that. I love it, "irritable activity." So, now I can use my irritable brain as a crutch if I say something offensive.
So, what does all of this really mean? It means, my brain has uncontrolled electrical activity and yours does not. The two types of major neurotransmittrs in the brain can't get it together to either increase activity or decrease activity. The result is a seizure. The medication I take is to control the activity. The first medication was called Keppra XR. It has not been kind. I feel tired, have insomnia, loss of appetite, crabby, and did I mention crabby? It is hard to be a Mom and a career woman with those side effects. Heck, it is never easy. But, it is a giant struggle on this medication. The Doc suggested a new drug that is supposedly more mild. But, I have to take both for a month. I have to have the new med in my system for a month before I come off of the old med. I still can't drive until the end of August. I also suspect that I will be on medication for at least two years.
I mentioned that the "irritable activity" was found to be in two lobes. That, of course, drove me directly to the internet to see what it means. It means, I freaked myself out. The different lobes in the brain are responsible for different functions. The Temporal lobes are on either side of your head, right above your ears. Think, your temple. The Temporal lobes involve sensory, memory, language, and personality. The Parietal lobes are centered between the top part of your head and the very back. So, probably the "crown." The main function is cognition and spatial relationships.
What does this mean for me? I have no idea. My biggest worry and concern is not that it will be an issue today or tomorrow. But, that I will end up with problems as I age, like dementia. I watched my dear Grandmother struggle with this. It isn't pretty. So, my extra time is now being spent looking up ways to take better care of my brain. Yes, you can actually take care of your brain.
Many people laugh about a more natural lifestyle. They can laugh. It is okay. But, it is not okay to think that our society is "okay." You are what you eat. So, if you eat chemcial-laden foods, processed foods, and slather aluminum under your armpits for 70 years, believe me, you will have problems.
An EEG records electrical activity in the brain. The Doc wants to see steady waves. My Doc saw plenty of steady waves, but he also saw spikes. I asked him when the spikes were seen in the EEG. He didn't give me straight answer, but it made me believe that the spikes didn't only occur when my brain was provoked by hyperventilation and a strobe. He actually said, "there is some irritable activity in your temporal and parietal lobes." I honestly laughed out loud when he said that. I love it, "irritable activity." So, now I can use my irritable brain as a crutch if I say something offensive.
So, what does all of this really mean? It means, my brain has uncontrolled electrical activity and yours does not. The two types of major neurotransmittrs in the brain can't get it together to either increase activity or decrease activity. The result is a seizure. The medication I take is to control the activity. The first medication was called Keppra XR. It has not been kind. I feel tired, have insomnia, loss of appetite, crabby, and did I mention crabby? It is hard to be a Mom and a career woman with those side effects. Heck, it is never easy. But, it is a giant struggle on this medication. The Doc suggested a new drug that is supposedly more mild. But, I have to take both for a month. I have to have the new med in my system for a month before I come off of the old med. I still can't drive until the end of August. I also suspect that I will be on medication for at least two years.
I mentioned that the "irritable activity" was found to be in two lobes. That, of course, drove me directly to the internet to see what it means. It means, I freaked myself out. The different lobes in the brain are responsible for different functions. The Temporal lobes are on either side of your head, right above your ears. Think, your temple. The Temporal lobes involve sensory, memory, language, and personality. The Parietal lobes are centered between the top part of your head and the very back. So, probably the "crown." The main function is cognition and spatial relationships.
What does this mean for me? I have no idea. My biggest worry and concern is not that it will be an issue today or tomorrow. But, that I will end up with problems as I age, like dementia. I watched my dear Grandmother struggle with this. It isn't pretty. So, my extra time is now being spent looking up ways to take better care of my brain. Yes, you can actually take care of your brain.
Many people laugh about a more natural lifestyle. They can laugh. It is okay. But, it is not okay to think that our society is "okay." You are what you eat. So, if you eat chemcial-laden foods, processed foods, and slather aluminum under your armpits for 70 years, believe me, you will have problems.
Saturday, April 2, 2011
Special Needs Mom
Pity-Party? Nope. Rant/Vent? A little. An outlet for frustration and Emotion? Absolutely.
I don't have Autism. I don't have Down's Symdrome. I don't have ADHD. I have Epilepsy. There are so many children with special needs. There are programs and support groups for the parents and the children. That is great. But, what about a special needs parent? I did a Google search for "Mom with special needs." I only saw sites and blogs for Moms who have CHILDREN with special needs.
As a child, I had seizures. So, MY Mom had a child with special needs. But, my Mom wasn't the one with the need...I was. Now, I am a Mom AND I have special needs. I do remember talks with teachers on what to do if I had a seizure. My desk was moved to the end so that if something happened, someone would have better access to me. I had to take medication and have regular bloodwork. That is all I remember. I honestly don't know what my Mother went through. I do know that she witnessed the first of my three seizures...all of which I vividly remember. Now, I am a Mom AND I have special needs. I can tell you from experiences sides of this topic. It is much more difficult to be an adult with a special need than to be a child with a special need. As a child, I had my Mom and my Grandparents. As an adult, who happens to have a successful career and family of my own, I have no one. There is no one to think for me, do for me, and make sure I am taken care of...but, me. I do have a small support system. Steve does what he can and so does my Mom. Deb (Dom's Nanny) will take me to the store or to get DOm's haircut. I am sure she would do more, if I asked. But, it is amazingly difficult to have to ask people for help on a regular basis. So, I don't.
You can only use your resources so much before they become exhausted. Forget what I WANT to do, I struggle with coordinating what I NEED to do. Every week I wonder how I am going to go to the grocery store and to a Doctor's appointment. Forget the fact that I would like a few minutes to myself. Perhaps, to walk around Target on my own time. Or, to go shopping for clothes...since I have dropped so much weight since my seizure. I have always been a very independent person. This is definitely a new and un-welcomed challenge.
I am, however, SO VERY THANKFUL that my employer is so understanding. I can work from home. I was already a remote employee. So, none of that changed. I can do just about everything I did before. I just can't drive to visit customers. BUT, I do have a small list of people I can pay to take me out of town. That is good. I haven't had to do this yet. My company will also hire me a driver if I need one. I am trying hard not to have to do this. So, I am really doing well with work stuff. It is the personal stuff that has been a real kicker.
I do have a very understanding partner. He picks up my medicine and will bring me dinner, if I ask. But, coordinating time for him to do things he would like to do or things he needs to do is also very difficult. We have to care for our toddler. Who, by the way, deserves the right kind of attention and care. We have a great Nanny for him. But, she is available to us while we are working...and sometimes we get a free night. MUCH APPRECIATED. But, what about duties and responsibilities as homeowners? Yard work, laundry, cooking, cleaning, building a fence? No time for that. ANd, after all the duties and responsibilities as parents and homeowners, who has time for a date?
We all need an outlet of somekind. Neither of us are getting what we need. I am sure Steve would like to play golf and I know I would love to go shopping and spend some time with my favorite spa-girl, Jen. I would even settle for 4 hours of silence on a weekend so that I can finish weeding my flowerbeds and properly clean my home.
I REALLY miss my Grandparents right now. They were two of the very best people I knew. So selfless. Maybe they spoiled me. Maybe. But, they would be here RIGHT NOW helping to make sure that we were all taken care of. They were so good at that. And, once I am back on my feet...er, behind the wheel, they will be my driving force for a future endeavour.
I don't have Autism. I don't have Down's Symdrome. I don't have ADHD. I have Epilepsy. There are so many children with special needs. There are programs and support groups for the parents and the children. That is great. But, what about a special needs parent? I did a Google search for "Mom with special needs." I only saw sites and blogs for Moms who have CHILDREN with special needs.
As a child, I had seizures. So, MY Mom had a child with special needs. But, my Mom wasn't the one with the need...I was. Now, I am a Mom AND I have special needs. I do remember talks with teachers on what to do if I had a seizure. My desk was moved to the end so that if something happened, someone would have better access to me. I had to take medication and have regular bloodwork. That is all I remember. I honestly don't know what my Mother went through. I do know that she witnessed the first of my three seizures...all of which I vividly remember. Now, I am a Mom AND I have special needs. I can tell you from experiences sides of this topic. It is much more difficult to be an adult with a special need than to be a child with a special need. As a child, I had my Mom and my Grandparents. As an adult, who happens to have a successful career and family of my own, I have no one. There is no one to think for me, do for me, and make sure I am taken care of...but, me. I do have a small support system. Steve does what he can and so does my Mom. Deb (Dom's Nanny) will take me to the store or to get DOm's haircut. I am sure she would do more, if I asked. But, it is amazingly difficult to have to ask people for help on a regular basis. So, I don't.
You can only use your resources so much before they become exhausted. Forget what I WANT to do, I struggle with coordinating what I NEED to do. Every week I wonder how I am going to go to the grocery store and to a Doctor's appointment. Forget the fact that I would like a few minutes to myself. Perhaps, to walk around Target on my own time. Or, to go shopping for clothes...since I have dropped so much weight since my seizure. I have always been a very independent person. This is definitely a new and un-welcomed challenge.
I am, however, SO VERY THANKFUL that my employer is so understanding. I can work from home. I was already a remote employee. So, none of that changed. I can do just about everything I did before. I just can't drive to visit customers. BUT, I do have a small list of people I can pay to take me out of town. That is good. I haven't had to do this yet. My company will also hire me a driver if I need one. I am trying hard not to have to do this. So, I am really doing well with work stuff. It is the personal stuff that has been a real kicker.
I do have a very understanding partner. He picks up my medicine and will bring me dinner, if I ask. But, coordinating time for him to do things he would like to do or things he needs to do is also very difficult. We have to care for our toddler. Who, by the way, deserves the right kind of attention and care. We have a great Nanny for him. But, she is available to us while we are working...and sometimes we get a free night. MUCH APPRECIATED. But, what about duties and responsibilities as homeowners? Yard work, laundry, cooking, cleaning, building a fence? No time for that. ANd, after all the duties and responsibilities as parents and homeowners, who has time for a date?
We all need an outlet of somekind. Neither of us are getting what we need. I am sure Steve would like to play golf and I know I would love to go shopping and spend some time with my favorite spa-girl, Jen. I would even settle for 4 hours of silence on a weekend so that I can finish weeding my flowerbeds and properly clean my home.
I REALLY miss my Grandparents right now. They were two of the very best people I knew. So selfless. Maybe they spoiled me. Maybe. But, they would be here RIGHT NOW helping to make sure that we were all taken care of. They were so good at that. And, once I am back on my feet...er, behind the wheel, they will be my driving force for a future endeavour.
Subscribe to:
Posts (Atom)