Monday, January 9, 2012
Just another day !
Writing while under the influence of seizures or drugs has the same effect......lots of going back to edit or just plain fix what i misstated. I have never gone so long unable to work past or through something. In my family of origin the sick are just the weak or lazy and I am neither; I must fight this battle within me that tells me everyday get up your just being lazy. I am strong, each day I get out of bed and I fight against this fire storm of electrical activity in my head. Each day I take drugs that make me feel lost and dissociated from my mind and body. The fire storm in my mind is not only keeping me home but now in almost utter darkness. The light of everything hurts my eyes and brain, mornings are best because they have been rested but by evening I need sunglasses to watch TV in the dark. I do not know what rages in my mind but I want freedom from it. I want to be my old happy go lucky self. Remember I told you once everything I have ever spoken ill against another God is making me face today, well here I am again fighting so now I fear I must become mute as well. I work hard to fight the constant and abiding fatigue it causes while working hard every day to keep my sanity and memories intact. I am a warrior doing battle every single day of my life. I can do this because of the beauty of the people God has placed in my life. My husband is the kindest man I have "ever" known, not once has he made me feel anything but loved, nothing I ask is to great, he makes me feel like a princess and he is my prince doing my biding. . He serves me everyday in any way possible. I am forever in love because he is mine. I write because I am here alone and I want people to know the kinds of things I think about. I wish this illness were gone and I could be my healthy self again but right now I will take each day as it comes and find joy and laughter in it ! I love you all ! Happy Monday!
Tuesday, January 3, 2012
Today I am feeling somewhat better and I say that with hesitation because storms roll in at any given time, unexpected and uninvited! I am at the mercy of God and this defective brain He gave me. I still call on Him and trust Him because as a parent I know sometimes it is painful to let your children go through things, when you know deep down they will come out on the other side better.
I want to confess here and now I have always been ashamed to tell people I have Epilepsy, I have always said" I have a seizure disorder." Everything negative is attached to the word. The church I grew up in thought of it as a spiritual illness. I thought of it as hell on earth. Most every person I know who had Epilepsy was also suffering from other mental deficiencies so I was not about to throw that knowledge out there for fodder as the household I grew up in I was the slowest in more ways than one.
The first time I ever helped any one with the disorder was a friend who's child has seizures and I remember telling her the best part is when you pass out then you don't feel anything and you just sleep afterwards. I knew she somehow took some comfort that I could speak to her fears.
Most my life I have been unaware of anything but the gran-mal seizures I have, but now that I am in the throws of menopause I have learned that I also have some thing called partial complex seizures. This partial seizure needs to be renamed as it sounds so much less insidious than it really is. Example, Grand-mal seizure throws you to the ground whips your ass walks away, when you can, you get up clean yourself off and then crawl into bed and sleep it off. Partial seizure hits you while you are on your feet , you forget where you are and you be come overwhelmed with fear. Partial seizure hits you and you can no longer speak or at best you say part of a word over and over, all the while your mind is screaming what is happening to me? Partial seizure makes your head nod and your arm pulsate or your entire body jerk all while you have no control. These seizures hit way more frequent then the once a month generalized ,grand-mal but I can safely say they all suck!
Seizures make it impossible to drive. If I take the meds I need, they slow my brain activity down so much that the movement of the car hurling through space bombards my brain with so much info I have a panic attack but if I don;t take them I will possibly run into someone while my brain is out of touch!I suppose this is just too much information for some folks but my hope is it will bring this disease into the light and out of the dark ages or you could say I am bringing Epilepsy out of the closet here is your ticket to my personal view from the inside out hope you learn from my ride!
I want to confess here and now I have always been ashamed to tell people I have Epilepsy, I have always said" I have a seizure disorder." Everything negative is attached to the word. The church I grew up in thought of it as a spiritual illness. I thought of it as hell on earth. Most every person I know who had Epilepsy was also suffering from other mental deficiencies so I was not about to throw that knowledge out there for fodder as the household I grew up in I was the slowest in more ways than one.
The first time I ever helped any one with the disorder was a friend who's child has seizures and I remember telling her the best part is when you pass out then you don't feel anything and you just sleep afterwards. I knew she somehow took some comfort that I could speak to her fears.
Most my life I have been unaware of anything but the gran-mal seizures I have, but now that I am in the throws of menopause I have learned that I also have some thing called partial complex seizures. This partial seizure needs to be renamed as it sounds so much less insidious than it really is. Example, Grand-mal seizure throws you to the ground whips your ass walks away, when you can, you get up clean yourself off and then crawl into bed and sleep it off. Partial seizure hits you while you are on your feet , you forget where you are and you be come overwhelmed with fear. Partial seizure hits you and you can no longer speak or at best you say part of a word over and over, all the while your mind is screaming what is happening to me? Partial seizure makes your head nod and your arm pulsate or your entire body jerk all while you have no control. These seizures hit way more frequent then the once a month generalized ,grand-mal but I can safely say they all suck!
Seizures make it impossible to drive. If I take the meds I need, they slow my brain activity down so much that the movement of the car hurling through space bombards my brain with so much info I have a panic attack but if I don;t take them I will possibly run into someone while my brain is out of touch!I suppose this is just too much information for some folks but my hope is it will bring this disease into the light and out of the dark ages or you could say I am bringing Epilepsy out of the closet here is your ticket to my personal view from the inside out hope you learn from my ride!
Monday, January 2, 2012
Hope lost at times !
I wake today flooded in my own blood.....everything I have ever read says women with epilepsy usually go thru menopause sooner than most and with few exceptions, me, I am the lucky one who gets a life filled with cramps so unbearable I had seizures because of the pain. I have bled so heavy that I laugh when I hear others complain about changing tampons 4 times a day. I am an angry bitch right now and I know all the things to say to make it better, I have been saying them for years to others and myself. Today I don't know how to stop these feelings and I'm not sure that would be the right thing to do. My brain is on overload right now and I am setting it free of the bondage it is in so I can recapture the woman who used to live here, I like her much better.
I think for the first time in my life I understand people with different types of mental illness. I am staying at home most all the time because the stimulation of all the visual movement, colors and brightness make me feel overwhelmed. The sounds make me to nervous. People make me angry as they always seem to be in my way. The information the brain takes in and processes is amazing and I have only learned just how much it is for me has been during these electrical assaults called seizures have made made it impossible to process it. Doctors call them electrical storms and I would say that is not clear enough because a storm passes and these rage on day after day, hour after hour, minute after minute. A storm in the sky can be seen and heard but one in the brain can only be known to the very one experiencing it, unless people close to the one experiencing have learned the tells. To everyone I know they see me as a picture of health but my defect is hidden behind my flesh and eyes. I can be having a conversation with you while my right side is pulsating from a seizure or my head nodding, or I am staring off in what appears to be thought. I can be looking for a word and you think it is nothing or the pattern of my speech changes and you give no thought but inside me it is a seizure. There is a price to pay for every little electrical storm ,fatigue , memories lost and I am exhausted and depleted most always after even the smallest one. I put these words here on this page because I have lived for over 25 years in a darkness that others do not understand, today I am coming out of the closet. Today I make it my mission to help those who are less fortunate than I and cannot find a voice for the storm that rages within. I am only one face of epilepsy and there are many!
I think for the first time in my life I understand people with different types of mental illness. I am staying at home most all the time because the stimulation of all the visual movement, colors and brightness make me feel overwhelmed. The sounds make me to nervous. People make me angry as they always seem to be in my way. The information the brain takes in and processes is amazing and I have only learned just how much it is for me has been during these electrical assaults called seizures have made made it impossible to process it. Doctors call them electrical storms and I would say that is not clear enough because a storm passes and these rage on day after day, hour after hour, minute after minute. A storm in the sky can be seen and heard but one in the brain can only be known to the very one experiencing it, unless people close to the one experiencing have learned the tells. To everyone I know they see me as a picture of health but my defect is hidden behind my flesh and eyes. I can be having a conversation with you while my right side is pulsating from a seizure or my head nodding, or I am staring off in what appears to be thought. I can be looking for a word and you think it is nothing or the pattern of my speech changes and you give no thought but inside me it is a seizure. There is a price to pay for every little electrical storm ,fatigue , memories lost and I am exhausted and depleted most always after even the smallest one. I put these words here on this page because I have lived for over 25 years in a darkness that others do not understand, today I am coming out of the closet. Today I make it my mission to help those who are less fortunate than I and cannot find a voice for the storm that rages within. I am only one face of epilepsy and there are many!
Sunday, January 1, 2012
2012
2012 finds me facing so many new and different things ! I am so angry ....no joyful post about all kinds of opportunities just raw emotion as I face day after day of seizures. I know this is not like me to post this but I am sick and tired of being sick and tired. I am starting this year out being real and raw. I am happy for all of you with new grand-babies and children who are ultra successful, truely but I am here living out my ordinary life, facing a future that is uncertain and like most all of us I am not special, (we all face crap.) Today I have no beautiful resolution. I am on medications that are making me gain weight so guess what, next time you see me I will be fat. I am also angry I can no longer drive a car, I am dependent on others and that sucks royally I have always been able to do more than most, even when I was at my worst, not today. I am in the middle of a pity party so excuse me if my ignorance shows itself , I really do not need any attention either , so please don't call. I am exploding with emotion and I fear if it doesn't find its way out I will have yet another seizure. Can I tell you seizures and menopause SUCK!
I know all the reasons I have to be grateful , I do and if it were not for those people I would have checked out already, true. I feel certain the days ahead will not be so bleak but right now the clouds and fog are blocking my view. I will never pretend, I will be real at all times . I started this day with multiple seizures and several break downs , I am not special and my pain doesn't trump yours . My journey is meant to make me great or break me and right now I am about to break! I write to give a voice to my internal struggle , I don't want or need sympathy , I want to spew these feelings out so they will stop haunting me. I want this illness to get under control so I can have my life back. I want the storm raging in my brain to cease and desist, no matter how that happens. IF I CAN'T BE ME I DON'T WANT TO EXIST! Drooling and sitting around taking up space is no life at all, so forgive me if I see death as a beautiful option. I know my words have made you uncomfortable but I had to vent this ugliness so the clouds can lift and the fog will clear.
No I am not demon possessed I am ill My brain has storms of an electrial nature but if you feel compeled to pray for my deliverence I would be thankful as anything has to be better than living with this constant draining of my life and energy. I am feel free now so I will close but if you feel so inclined pray for my family, Brad ,Pam, John, Chase and Abby.
Truth is I pray the God of creation blesses you with more than you could ever hope for. May prosperity and good health always be yours along with joy , hope and LOVE!
I know all the reasons I have to be grateful , I do and if it were not for those people I would have checked out already, true. I feel certain the days ahead will not be so bleak but right now the clouds and fog are blocking my view. I will never pretend, I will be real at all times . I started this day with multiple seizures and several break downs , I am not special and my pain doesn't trump yours . My journey is meant to make me great or break me and right now I am about to break! I write to give a voice to my internal struggle , I don't want or need sympathy , I want to spew these feelings out so they will stop haunting me. I want this illness to get under control so I can have my life back. I want the storm raging in my brain to cease and desist, no matter how that happens. IF I CAN'T BE ME I DON'T WANT TO EXIST! Drooling and sitting around taking up space is no life at all, so forgive me if I see death as a beautiful option. I know my words have made you uncomfortable but I had to vent this ugliness so the clouds can lift and the fog will clear.
No I am not demon possessed I am ill My brain has storms of an electrial nature but if you feel compeled to pray for my deliverence I would be thankful as anything has to be better than living with this constant draining of my life and energy. I am feel free now so I will close but if you feel so inclined pray for my family, Brad ,Pam, John, Chase and Abby.
Truth is I pray the God of creation blesses you with more than you could ever hope for. May prosperity and good health always be yours along with joy , hope and LOVE!
Wednesday, December 28, 2011
Lost and found !
I am losing myself it seems. My words are trapped in my head and my mouth will not let me speak them. If I lose my ability to express myself what shall I become? Words are life to me. words are song without the music. Words give expression to every human feeling and idea. My words are going to leave me I fear. Everyday I'm becoming more and more separated from them. My mind is washed with frustration because I can't put them into order, the letters that make logic or sense are all jumbled inside my head. I will not be afraid what is happening I will decide it is a chance to relate to so many who before now seemed so simple and so far away. I can't be sure if this is something I will come back from or is this the journey I am destined to take? Who knows but God Himself and He is silent as well. I will not be afraid of my silence but I will embrace it. The burden I may become to others, will not cause me to fear either. I know I am loved and that love shall be enough to sustain me till my Father calls me home!
Saturday, December 17, 2011
Wulff family
Merry Christmas and a very Joyous New Year !
Well there goes and here comes another year, tell me how and why the world must move so fast? Maybe just maybe I am getting slower, no it is time, clocks are going faster, trust me on this! Our family has much to be thankful for, truly we feel loved and honored by each of you and hope we make you feel the same!
Our family business is still up and running and after 16 years we are still able to provide service to our community and contribute to the economy. John is officially part owner now and he has been able to take a load off his Dad and Me as well. We feel so blessed to have him there! He is a good man much like his father.
Chase is living in New York City and really seems to have adjusted to city life. He has a new apartment and shares it with Alexandra Bouchard , she is a friend from Salisbury , Chase attended her prom with her and Abby has been friends with her since 9th grade. Their apt. seems more like a home now and that is refreshing, for all parents concerned . Chase works at a restaurant called" Hells Kitchen" but not the one on TV and he is happy. The future is full of possibilities and Chase is finding the challenges liberating!
Abigale has moved back home and attending college, her course of study is physical therapy. With all of Abby's back ground in gymnastics and sports along with all her personal injuries we think physical therapy is the perfect fit! She has created a few wedding cakes but only for personal friends. She still dreams of owning a restaurant some day. I laugh because she is a dreamer just like me and her presence is a joy most always.
Our family is blessed for all we have and all we have lost. This year we had to say goodbye to Mom ( Beth Wulff ), by far this has been one of the most difficult things we as a family have ever had to experience. Tho we said goodbye for now, we will always be reminded of her and her love and dedication to us. She made our world a better place so when we reflect we will always smile even when our hearts feel pierced by our loss. Mom would be disturbed if we made too much over her , she never wanted or demanded anything of us only "KISSES". Mom you will never be gone as long as we carry your love with us!
Brad and I feel fortunate for the years we have shared with each other. Our relationship has only deepened with age. We are a good match and feel happy we had such good fortune to find each other so young. The days ahead look only sweeter.
We pray this year finds each of you full of gratitude for the ones you love. May you days be full of grace and mercy and may you always take the time to reflect at the end of the day and give thanks for those God has given you to love. May you always take time to dream and share your dreams with the ones you love. May laughter always fill your homes and the joy of the Lord be your strength for now and ever more!
Merry Christmas from
the Wulff house
Well there goes and here comes another year, tell me how and why the world must move so fast? Maybe just maybe I am getting slower, no it is time, clocks are going faster, trust me on this! Our family has much to be thankful for, truly we feel loved and honored by each of you and hope we make you feel the same!
Our family business is still up and running and after 16 years we are still able to provide service to our community and contribute to the economy. John is officially part owner now and he has been able to take a load off his Dad and Me as well. We feel so blessed to have him there! He is a good man much like his father.
Chase is living in New York City and really seems to have adjusted to city life. He has a new apartment and shares it with Alexandra Bouchard , she is a friend from Salisbury , Chase attended her prom with her and Abby has been friends with her since 9th grade. Their apt. seems more like a home now and that is refreshing, for all parents concerned . Chase works at a restaurant called" Hells Kitchen" but not the one on TV and he is happy. The future is full of possibilities and Chase is finding the challenges liberating!
Abigale has moved back home and attending college, her course of study is physical therapy. With all of Abby's back ground in gymnastics and sports along with all her personal injuries we think physical therapy is the perfect fit! She has created a few wedding cakes but only for personal friends. She still dreams of owning a restaurant some day. I laugh because she is a dreamer just like me and her presence is a joy most always.
Our family is blessed for all we have and all we have lost. This year we had to say goodbye to Mom ( Beth Wulff ), by far this has been one of the most difficult things we as a family have ever had to experience. Tho we said goodbye for now, we will always be reminded of her and her love and dedication to us. She made our world a better place so when we reflect we will always smile even when our hearts feel pierced by our loss. Mom would be disturbed if we made too much over her , she never wanted or demanded anything of us only "KISSES". Mom you will never be gone as long as we carry your love with us!
Brad and I feel fortunate for the years we have shared with each other. Our relationship has only deepened with age. We are a good match and feel happy we had such good fortune to find each other so young. The days ahead look only sweeter.
We pray this year finds each of you full of gratitude for the ones you love. May you days be full of grace and mercy and may you always take the time to reflect at the end of the day and give thanks for those God has given you to love. May you always take time to dream and share your dreams with the ones you love. May laughter always fill your homes and the joy of the Lord be your strength for now and ever more!
Merry Christmas from
the Wulff house
Wednesday, December 14, 2011
Brad -man of my dreams
Brad Wulff came into my life when I was 16 years old as a classmate. Our entire junior year of high school I think I may have heard him say 10 words, as for me he thought I was a loud mouth because well, I like to express myself and that was about the time I was finding my voice. He was nice and cute in the big old clumsy athlete kind of way, he was tall ,big hands and feet like a puppy who was just not quite comfortable in this big dog body!
We were never friends just acquaintances. That year he sat with the guys on one side of our drama class and I sat with Kim Butler on the other side. I still find it hard to believe I never saw anything more than a nice guy, when I looked at him.
Well our junior year came to a close and we had our first face to face encounter. He was pissed off by something I did during the performance part of our acting exam. Long story short I said I was sorry and gave him my number and told him to call and we could hang out. Summer began and he never called. July found me on SnowHill rd. at the 7/11 where I saw his brother Kurt and spoke to him , well low and behold his father was in the store too. His Dad and I spoke for a while when he said I should call Brad some time , I told him Brad had my number he should call me. A few days went by and Brad rode by my house where I flagged him down. We had a real conversation in his car and went on our first date that night. I need to express that we had not had any real chemistry between us up and until we sat face to face and talked. When he kissed me the first real kiss I knew I found a man of passion and a gentleness I had never experienced, I had kissed many boys but none kissed as good as he. Truly we became inseparable. I knew he was the love of my life not to very long after we began dating, it took him longer to figure the whole thing out but I had time, I was only 17. Brad and I have grown from adolescence to adults together and I am blessed to have taken this journey with him.
I feel like he gives me strength to be more than I thought possible. He makes me want to be a better person. Our children sealed the deal and we became more than lovers we became a family. I write this history here today to celebrate our 31 wedding anniversary and to say I can only hope there are many more to come! When I was 17 I wrote my name as Mrs. Brad Wulff not knowing that his name would be mine and the one I gave my children as well ! The man of my dreams was only a boy when I first met him but he has become the kind of man I always dreamed of marrying.
Happy Anniversary to the love of my life !
We were never friends just acquaintances. That year he sat with the guys on one side of our drama class and I sat with Kim Butler on the other side. I still find it hard to believe I never saw anything more than a nice guy, when I looked at him.
Well our junior year came to a close and we had our first face to face encounter. He was pissed off by something I did during the performance part of our acting exam. Long story short I said I was sorry and gave him my number and told him to call and we could hang out. Summer began and he never called. July found me on SnowHill rd. at the 7/11 where I saw his brother Kurt and spoke to him , well low and behold his father was in the store too. His Dad and I spoke for a while when he said I should call Brad some time , I told him Brad had my number he should call me. A few days went by and Brad rode by my house where I flagged him down. We had a real conversation in his car and went on our first date that night. I need to express that we had not had any real chemistry between us up and until we sat face to face and talked. When he kissed me the first real kiss I knew I found a man of passion and a gentleness I had never experienced, I had kissed many boys but none kissed as good as he. Truly we became inseparable. I knew he was the love of my life not to very long after we began dating, it took him longer to figure the whole thing out but I had time, I was only 17. Brad and I have grown from adolescence to adults together and I am blessed to have taken this journey with him.
I feel like he gives me strength to be more than I thought possible. He makes me want to be a better person. Our children sealed the deal and we became more than lovers we became a family. I write this history here today to celebrate our 31 wedding anniversary and to say I can only hope there are many more to come! When I was 17 I wrote my name as Mrs. Brad Wulff not knowing that his name would be mine and the one I gave my children as well ! The man of my dreams was only a boy when I first met him but he has become the kind of man I always dreamed of marrying.
Happy Anniversary to the love of my life !
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