When you have OBS, as the brain begins to deteriorate and become crumbled bacon; you begin to lose the ability to discern between what is thrown at you and what is real. You become more sensitive to everything around you. You look at things so differently than a "normal" brained person might. Sometimes you are called on it and sometimes you inhale it and suffer with it. The people you live with can either become your number one enemy or your best friends. It really all depends on how perceptive they want to be, or how involved they wish to be in your illness. Some cannot deal with it and shrink away. Then that is when the person who has OBS feels the most rejected, alone and wants to shrink into a ball of nothingness. The family members often do not try to do this to their loved one, most times it is a normal reaction. Wanting to run away from their loved one's illness hoping it will go away. Sometimes, your loved ones can just be cruel. Not meaning to, I reckon, but after what I had been experiencing from my family, I sometimes wonder. I have personally been through this and see some of the similarities of my actions when I dealt with my father that I see in my own family. And as I see some other things happening, I keep questioning if I did this to my own father and if I did, may my father forgive me; as I am having a hard time forgiving myself.
It is today that I am wondering if my marriage will last, if I want it to under the current conditions. My children often say things that hurt me beyond what a mother's heart can bear. But I continue to forgive and forgive, often explaining to them how these things hurt and they sometimes reappear only to leave the wounds deeper in my mind. There are no bandages that can cover them, just like with diabetes, when you get a wound, it never really heals, it just scars. I carry many scars. When my husband corrects me, I sometimes feel like a child and being scolded in front of others is so demeaning to me. I feel like my mother has somehow influenced him. I treated him terribly the first 7 years and it is all coming back to me now. I acted like my mother, controlling, demeaning, insulting and everything was mine attitude. Now, that ugly horrible beast has come back, taking my husband's usual good natured attitude and has changed him into this person that I don't know if I can stay with. He left me for the same reasons. Lately, whether he knows it or not, he has been letting the insults fly off his tongue, lashing me, whipping me with his words. I want to cry, but my mother's words keep coming back to me, "Only babies cry." So I take it in. I have tried to tell him how it hurts and he keeps yelling at me "I'm sorry" before I can even finish what I am saying. To him, it is the end of the discussion. He becomes sharp in his voice and I know it is time to submit. I submit, because of two reasons; one... it tells us in the Bible to and the second, I really don't want him to leave again. Not truly in my heart. I promised that if he would ever come back when he left in 2000, I would stop being aggressive in my words and not argue with him to the point where he leaves.
The children are another matter. 3 children, 3 different personalities. As they should be. I am so blessed to have the children I have. Ages 21, 19 and 16 are the 3 remaining children I have. My oldest daughter, Dee-Dee, died 21 minutes after birth on 28 July 1988. She was born without a brain and had spina bifida. 2 of my children were kidnapped and were kept by their kidnappers all their lives. One I never really got back was my son James. He is my 19 year old. Anneliese I got back in 2008. Danielle is the one that is biologically Dan's and mine. We raised her somewhat together, except for the 4 years we were apart, which is a whole complicated story and one I cannot go into right now. Just know that Dan was not able to be here or contact us until things were cleared up. He left on his own, but things happened during the time he was gone that he was blamed for that he did not do and it caused us to be separated for a really long time.
Anyways, my two girls, have caused some rift for me. Saying things and doing things that shaken my whole being and make me wonder sometimes with and including what Dan has done and what my mother has done, why I am even alive. The past couple weeks have been extremely hard, as Anneliese has been in and out of the home. Going down to my mother's and things have been said between both of them to accuse me, vindict me, and well, they may as had executed me; because it would had been a whole lot easier. One plays one against the other, and I am just sitting here; minding my own business, crying over Anneliese, over my first grandchild she is carrying, wondering if she is okay, if she is going to come home or not. And mostly if I will ever see my first grandchild. Because we layed down rules, there was an argument. It lead from one thing to another. Emotions were flying everywhere. People were saying things and doing things without even thinking. Causing other people harm, even people who were not in the immediate situation. Then comes the situation with Danielle. This also kind of weaves into Anneliese's situation as well.
Being that I am on welfare because I cannot work and I cannot get SSI or SSD, I need my medical assistance. My medicines alone for one month cost $4,235.00. Obviously, I could not afford that without medical assistance. Because of the rules of Welfare, my family can only bring in a certain amount of income and if we go over that amount, I lose my medical assistance. This means that no one in my family can get a job. Without a job, they (especially the girls) cannot move on with their lives. They will not be able to provide money for themselves to go to school or get their drivers licenses or anything. It also prevents Anneliese to buy things for her unborn child or provide housing for her and boyfriend. Danielle came to me yesterday with her drivers information and wants badly to get her learners permit. She needs money to get this stuff rolling. I explained to her that since I am behind this months rent and because our bills nearly exceed our income every month, I will not have the money to provide what she needs. Comments were made that she needs to move on with her life and not sit around like the rest of us doing nothing and that there were references to her pregnant sister. Later, she remarked to her father in the car while he was taking her to school that she will not be able to move on with her life until basically one of us is dead. Anneliese has been doing her own little thing, when she was at my mother's. Demeaning my husband, and me. Saying things to her that was only to be known to this household. Danny, he has said to me in regards to the baby quilt the other day, that he knows this is for our grandson, but we should had put the money towards the car. That hurt me because that is not the only reason why I am doing this for D'ante. I am doing this, because of several reasons. It may be the only thing I will ever be able to give him from me, handmade by me, for him to know that I loved him. I may not be here to see him grow and I wanted him to have it to pass down. To know that I am not a grandmother like my mother. I wanted to be the quilting, cross stitching, baking cookies and making big meals grandma. Cross stitching helps my brain. Yes, I do the family history, play games on Pogo.com but this exercises my brain and fingers in a different way. Helping me with hand/eye coordination. Trying to keep myself well. If he felt that way, he should had said something before I bought it. BTW, I had a coupon, for 50% off of it anyways. It didn't even cost that much. How can you put a price on something I make with love or a car that I cannot pass down to D'ante. I know, he was thinking... oh what is that word.... responsiblly. Ok, a brownie point for him. Then Danielle wanted to make something for the baby. I told the girls I got 2 more coupons. Danielle and Anneliese both wanted a little something to make for D'ante. Neither children are getting any Christmas presents because I cannot afford them and this is something they wanted to do. So I took the girls out last night and Anneliese got a painting kit and Danielle chose a cross stitch birth record for D'ante. Danny was with us of course. The girls and I worked together at the table for the first time in I couldn't tell you how long. I was just beginning to come back from the hurtful words Danielle had said earlier. I had forgiven and moved on. Her Dad came up from the basement and his daughter showed him her beautiful work. It is amazing. Dad said to her "Wow, that's incredible. Amazing, that's further than she (referring and pointing to me) got and it's beautiful." I just sat there and looked at him and then looked at Danielle. I was not angry with Danielle, I was hurt by Dan. This is like the 3rd insult in a week and then today, he scolded me in front of Danielle and Caleb for feeding Reba a scrap of bread. Top all of this with a Christmas card from my mother who is in the process of evicting me for not paying the rent this month, a Christmas card saying "Happy Holidays from my home to yours. Love Mom" and then letting me know on the phone she is going to evict me if I don't have the rent by the end of the month. I can't take it anymore. Yesterday when I heard the things Danielle said, the previous weeks with Anneliese's doings and now Dan's and my mother's, I felt like the most horrible mother and wife. I do not want to continue to live like this. If this is what life is going to be like, I want out. Will I take my own life? Probably not, cause I am too chicken to die, I just pray that God will take me soon so that I can be with my Dad.
I did not write this to hurt my family in a public forum. I wrote this because there is a fine line of where I can handle things and where I cannot. I love my family unconditionally. I know I will receive a lot of flack for this, but this is my life. I believe that other people with OBS and Alzheimer's go through the same things and the same pain. They need to know they are not alone. This is reality. This is not my life everyday, but many days. I need to be heard. Please someone listen to me and share with the ones who are suffering. Let them know, they are not alone. It has been my mission that the truth be heard about this disease.
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Friday, December 16, 2011
Friday, November 25, 2011
Living with OBS and its Symptoms
Thinking about all the problems I have with owning OBS, sometimes I wonder if I own it or it owns me. It is a daily struggle to try to beat the defeat of OBS symptoms. I constantly have to be using my brain, exercising it as if it were a dystrophic muscle that I need to use to be able to walk.
Strange as it may sounds, I am almost grateful that I got it early, was diagnosed early and was aware of it young so that I had time to work with it. Time to try to beat the clock... and beat the clock I did indeed. Being diagnosed in 1997, the doctor gave me 5-10 years of valuable life left to live before OBS would completely take over my body and make me into a nonsensical character. I was 31 when I was diagnosed and had just a toddler and a husband at home. I would gaze at her wondering if I would ever live to see her grow up or if I did live, would I remember who she was. Would I be able to remember all the baby stories and her growing up stages that were important only to a mother and the stories my child would wish I did forget? Now in 2011, I have raced across that walk of death bridge and got to the other side, ever so safely however waning. I have not lost sight of the doom that surrounds me, but I have been able to build a stronger fight against it. My doctors do not understand how I have kept going. They told me back then that I had the body and a mind of a 81 year old woman. Indeed, on some days, this can be very true. My brain scans have come back as an 81 year old woman. Can you imagine? I still can't and it happened to me. My body through the years of 1997 until now has begun to show the break down and the aging that OBS brings upon one prematurely.
Some of the premature aging signs are obvious; short-term memory loss, bad vision, graying of the hair, hair loss, fracturing of the teeth, handwriting has aged quite a bit. I have become much more slow.... not able to get as much done. Hard to keep up with the housework and a daily schedule. Getting tired after only a little bit of work. Insomnia, appetite loss but weight gain due to muscle loss and not having the (here is another one of my OBS symptoms, forgetting words.... I know what word I want to use, but can't think of it, so I have to go try to look it up) metabolism as you young'uns have. Age spots on my face and hair under my chin that I need to shave. I even sport a 'stache and shave that too. I always tell my girls, "When I get old and you put me in a nursing home, please make sure you shave my face!!!!".
The other premature aging signs that are not so obvious to the public that are obvious to Danny and I are very personal ones. I share them here because it is important to understand what happens to someone who has OBS. 2 years ago, I was diagnosed with Premature Ovarian Failure. When your ovaries fail, they don't produce normal amounts of the hormone estrogen or release eggs regularly. This is different than menopause. Here is the difference: some of the symptoms women have with premature ovarian failure — also known as primary ovarian insufficiency — is that they may have irregular or occasional periods for years and may even become pregnant. Women with premature menopause stop having periods and can't become pregnant. The signs and symptoms of premature ovarian failure are similar to those experienced by a woman going through menopause and are typical of estrogen deficiency. They include:
Irregular or skipped periods (amenorrhea), which may be present for years or may develop after a pregnancy or after stopping birth control pills.
*Hot flashes
*Night sweats
*Vaginal dryness
*Irritability or difficulty concentrating
*Decreased sexual desire
Sounds fun, doesn't it? And I have all those problems. What I mind the most is the Hot flashes and night sweats. I have the fan on most every night now. I run around in shorts all day and even went to the store in the middle of the night on Thanksgiving Eve with a short sleeved shirt, shorts and slippers on. I did have a jacket around me though and I still caught a cold. (However, everyone in the home right now has a cold and Danielle says she gave it to us... so who knows.).
I do know I become irritated and emotional sometimes when I think that I no longer can have a child. I do have those moments. What I need to remember is that there is life after children and that being older does not automatically mean death immediately. However, for me, being classified as terminally ill with this disease and others, does not give me much hope.
The other signs of aging I have struggled with is loss of bladder control, loss of bowel control, boobs getting smaller and saggier. I lose a thought quite rapidly, as a caged bird flying out the open window at first chance. Night vision is miserable and so now I do not drive much at night. Speaking of driving... I drive much slower now, very cautious... sometimes almost too cautious! That can also cause accidents. The social anxiety has increased. I have become more depressed also, knowing that my life is going by so quickly now. When I was a kid, I couldn't wait until I was grown, to do what I wanted... but now that I am grown, I yearn to be a child again and be released from the responsibilities I once craved. Some days, I can't walk and I need to use a cane or a walker. I own a potty chair and hate using it. But I do use it when I have to. All in all, I am pretty stubborn and try to keep going.
With OBS and besides OBS, I also have Congestive Heart Failure, Coronary Artery Disease, Diabetes, Neuropathy, Bursitis, Premature Ovarian Failure, Premenstrual Dysphoric Disorder, 2 Heart Attacks, 1 Massive Stroke and several TIA's. I have a Hiatal Hernia, Cysts on my ovaries, a Prolapsed Uterus, and a Birth Defect where the two nerves in the back of my head are twisted and not vertical like yours are. Migraines are a constant problem and when I get them, sometimes I lose my memory or I go back in time to when I was a child or a different age. I have had gallbladder surgery when I was 22 and was pregnant, they almost lost me and the baby. I gave birth to a child who was born Anencephalic (born without a brain) and Spina Bifida. I gave birth to another child who has Asperger's Syndrome; which is a high functioning form of autism. Students with it often perform very well in the school environment and may even be the smartest students in the class. They do have problems with social interactions, though, often being unable to interact properly with others. They do not read body language well and sarcasm is often misunderstood. They also have very narrow interests, sometimes obsessing over specific things. My other two girls seem to be doing okay.
It is hard to live with OBS. My biggest fear is that my children will suffer from it someday. They already suffer from watching me and having to grow up around it. I sometimes say or think the wrong things and my girls think I am inappropriate or I am just goofy or act immature. They do not realize that my mind does not think like theirs do. I tend to go back and forth between ages in my mind. I can act 7 or I can act 80. It is not a choice, it is an action that my brain makes. Sometimes, I see it coming and I retreat to my room or try to remain quiet, or if I catch it late... I always apologize. If I don't apologize and girls, if you are reading this, I am sorry. If I don't apologize, then I missed it. I know that my husband and my girls are suffering with this terribly. They never know what type of mood I am going to be in. I cry a lot, I am terribly lonely now, the insecurities have swept in like a cold chill of air that no one, no matter how hard they try, sometimes cannot be comforted. I am a much more needy person. Need more help, for cleaning, for care, for comfort and joy, for talking to, for even getting dressed and putting my shoes on. I am so dependent on them and care not to be, I wish for them to be dependent on me.. and they are, sometimes too much where I can't take it anymore. And that is where the battle is, the balance does not exist for me. I wish I could just solve all their problems and not put my problems onto them. It frustrates me to no end to know that I cannot help them, because I am struggling right now to help myself.
In Alzheimer’s disease and OBS (dementia), a substance called amyloid builds up and causes the early death of brain cells, which results in a progressive loss of memory and other brain functions. This progressive loss can be a synonym to the word of hell. It is a slow demise resulting in depression, fear, sense of loss, loss of self-worth and being. A great burden that has unwillingly been placed on a precious husband and beautiful children who have lost their own childhood by taking care of their mother. It is the uncertainty of knowing when you have your next migraine and you lose your memory, will you ever get it back again. I do not want to die not knowing who my loved ones are. I never want to forget those baby stories of Danielle. I do not want to forget what the sound of my husband's beating heart sounds like that so comforts me now and puts me to sleep. Fear, you live in fear constantly every day, fighting to remember and remembering not to forget.
Strange as it may sounds, I am almost grateful that I got it early, was diagnosed early and was aware of it young so that I had time to work with it. Time to try to beat the clock... and beat the clock I did indeed. Being diagnosed in 1997, the doctor gave me 5-10 years of valuable life left to live before OBS would completely take over my body and make me into a nonsensical character. I was 31 when I was diagnosed and had just a toddler and a husband at home. I would gaze at her wondering if I would ever live to see her grow up or if I did live, would I remember who she was. Would I be able to remember all the baby stories and her growing up stages that were important only to a mother and the stories my child would wish I did forget? Now in 2011, I have raced across that walk of death bridge and got to the other side, ever so safely however waning. I have not lost sight of the doom that surrounds me, but I have been able to build a stronger fight against it. My doctors do not understand how I have kept going. They told me back then that I had the body and a mind of a 81 year old woman. Indeed, on some days, this can be very true. My brain scans have come back as an 81 year old woman. Can you imagine? I still can't and it happened to me. My body through the years of 1997 until now has begun to show the break down and the aging that OBS brings upon one prematurely.
Some of the premature aging signs are obvious; short-term memory loss, bad vision, graying of the hair, hair loss, fracturing of the teeth, handwriting has aged quite a bit. I have become much more slow.... not able to get as much done. Hard to keep up with the housework and a daily schedule. Getting tired after only a little bit of work. Insomnia, appetite loss but weight gain due to muscle loss and not having the (here is another one of my OBS symptoms, forgetting words.... I know what word I want to use, but can't think of it, so I have to go try to look it up) metabolism as you young'uns have. Age spots on my face and hair under my chin that I need to shave. I even sport a 'stache and shave that too. I always tell my girls, "When I get old and you put me in a nursing home, please make sure you shave my face!!!!".
The other premature aging signs that are not so obvious to the public that are obvious to Danny and I are very personal ones. I share them here because it is important to understand what happens to someone who has OBS. 2 years ago, I was diagnosed with Premature Ovarian Failure. When your ovaries fail, they don't produce normal amounts of the hormone estrogen or release eggs regularly. This is different than menopause. Here is the difference: some of the symptoms women have with premature ovarian failure — also known as primary ovarian insufficiency — is that they may have irregular or occasional periods for years and may even become pregnant. Women with premature menopause stop having periods and can't become pregnant. The signs and symptoms of premature ovarian failure are similar to those experienced by a woman going through menopause and are typical of estrogen deficiency. They include:
Irregular or skipped periods (amenorrhea), which may be present for years or may develop after a pregnancy or after stopping birth control pills.
*Hot flashes
*Night sweats
*Vaginal dryness
*Irritability or difficulty concentrating
*Decreased sexual desire
Sounds fun, doesn't it? And I have all those problems. What I mind the most is the Hot flashes and night sweats. I have the fan on most every night now. I run around in shorts all day and even went to the store in the middle of the night on Thanksgiving Eve with a short sleeved shirt, shorts and slippers on. I did have a jacket around me though and I still caught a cold. (However, everyone in the home right now has a cold and Danielle says she gave it to us... so who knows.).
I do know I become irritated and emotional sometimes when I think that I no longer can have a child. I do have those moments. What I need to remember is that there is life after children and that being older does not automatically mean death immediately. However, for me, being classified as terminally ill with this disease and others, does not give me much hope.
The other signs of aging I have struggled with is loss of bladder control, loss of bowel control, boobs getting smaller and saggier. I lose a thought quite rapidly, as a caged bird flying out the open window at first chance. Night vision is miserable and so now I do not drive much at night. Speaking of driving... I drive much slower now, very cautious... sometimes almost too cautious! That can also cause accidents. The social anxiety has increased. I have become more depressed also, knowing that my life is going by so quickly now. When I was a kid, I couldn't wait until I was grown, to do what I wanted... but now that I am grown, I yearn to be a child again and be released from the responsibilities I once craved. Some days, I can't walk and I need to use a cane or a walker. I own a potty chair and hate using it. But I do use it when I have to. All in all, I am pretty stubborn and try to keep going.
With OBS and besides OBS, I also have Congestive Heart Failure, Coronary Artery Disease, Diabetes, Neuropathy, Bursitis, Premature Ovarian Failure, Premenstrual Dysphoric Disorder, 2 Heart Attacks, 1 Massive Stroke and several TIA's. I have a Hiatal Hernia, Cysts on my ovaries, a Prolapsed Uterus, and a Birth Defect where the two nerves in the back of my head are twisted and not vertical like yours are. Migraines are a constant problem and when I get them, sometimes I lose my memory or I go back in time to when I was a child or a different age. I have had gallbladder surgery when I was 22 and was pregnant, they almost lost me and the baby. I gave birth to a child who was born Anencephalic (born without a brain) and Spina Bifida. I gave birth to another child who has Asperger's Syndrome; which is a high functioning form of autism. Students with it often perform very well in the school environment and may even be the smartest students in the class. They do have problems with social interactions, though, often being unable to interact properly with others. They do not read body language well and sarcasm is often misunderstood. They also have very narrow interests, sometimes obsessing over specific things. My other two girls seem to be doing okay.
It is hard to live with OBS. My biggest fear is that my children will suffer from it someday. They already suffer from watching me and having to grow up around it. I sometimes say or think the wrong things and my girls think I am inappropriate or I am just goofy or act immature. They do not realize that my mind does not think like theirs do. I tend to go back and forth between ages in my mind. I can act 7 or I can act 80. It is not a choice, it is an action that my brain makes. Sometimes, I see it coming and I retreat to my room or try to remain quiet, or if I catch it late... I always apologize. If I don't apologize and girls, if you are reading this, I am sorry. If I don't apologize, then I missed it. I know that my husband and my girls are suffering with this terribly. They never know what type of mood I am going to be in. I cry a lot, I am terribly lonely now, the insecurities have swept in like a cold chill of air that no one, no matter how hard they try, sometimes cannot be comforted. I am a much more needy person. Need more help, for cleaning, for care, for comfort and joy, for talking to, for even getting dressed and putting my shoes on. I am so dependent on them and care not to be, I wish for them to be dependent on me.. and they are, sometimes too much where I can't take it anymore. And that is where the battle is, the balance does not exist for me. I wish I could just solve all their problems and not put my problems onto them. It frustrates me to no end to know that I cannot help them, because I am struggling right now to help myself.
In Alzheimer’s disease and OBS (dementia), a substance called amyloid builds up and causes the early death of brain cells, which results in a progressive loss of memory and other brain functions. This progressive loss can be a synonym to the word of hell. It is a slow demise resulting in depression, fear, sense of loss, loss of self-worth and being. A great burden that has unwillingly been placed on a precious husband and beautiful children who have lost their own childhood by taking care of their mother. It is the uncertainty of knowing when you have your next migraine and you lose your memory, will you ever get it back again. I do not want to die not knowing who my loved ones are. I never want to forget those baby stories of Danielle. I do not want to forget what the sound of my husband's beating heart sounds like that so comforts me now and puts me to sleep. Fear, you live in fear constantly every day, fighting to remember and remembering not to forget.
Friday, November 11, 2011
New Facebook Page
http://www.facebook.com/pages/Organic-Brain-Syndrome-and-Alzheimers/145656998867605
Here is the new Facebook Page that I made specifically for Organic Brain Syndrome and Alzheimers facts, information and my posting my blog. Please click on the link and then click like, please share with all your friends and family. Thank you so much for your support!
Yvonne
Here is the new Facebook Page that I made specifically for Organic Brain Syndrome and Alzheimers facts, information and my posting my blog. Please click on the link and then click like, please share with all your friends and family. Thank you so much for your support!
Yvonne
OBS and Sounds... How They Affect Me
I have been thinking about what I wanted to write in Part 2 and I have so many thoughts running through my mind and I realized that is what OBS (and that is what I will be calling the Organic Brain Syndrome from now on.. who wants to type that all out all the time??!!!) is all about. A tangled web of confusion, a skein of yarn that was once so tightly wound, now knotted and strewn across the floor by two baby kittens perhaps getting into mischief.
Let's talk about sounds and how they affect me. From little on up.
When I was younger, I did okay. I was sheltered tremendously and went through many things no child should ever go through. But I found joy in the simple things of life that I would often escape to. That could be anything from my favorite doll Susie to Play-Doh, Crayola Crayons, Barbies, and a sandbox. I taught myself how to write cursive and would sit for hours on the floor in the TV room trying to make squiggly lines look like a letter. I was able to read and print write fluently by the age of four. I threw myself into books, reading a lot of Beverly Cleary when I was in 3rd grade on up. At 6 and 7, I was able to read The Wizard of Oz, Alice in Wonderland and titles in that same category of escaping and ending up in another world. These were not the picture books, mind you, these were the novels I was reading. At 8 and on up, I was intrigued by the Little House Series by Laura Ingalls Wilder. I was fascinated by anything old, antique or times of the past. I was never interested in the things my generation was interested in. First of all, I didn't know what they were. When I went to school, I felt like the oddball out. It always appeared to me that people were buzzing past me, chattering like monkeys, laughing; oh the laughing.... it was the one sound that annoyed me more than anything. Sometimes they were laughing at me and other times they were laughing amongst themselves about jokes or what happened the night before when "Ronnie" put "Tina's" head in the toilet, or laughing just because they were happy or amused. It was a sound I wasn't used to at home. To this day, I have a problem with the sound of laughter.
With OBS, depending on what stage one is at, you can get what I call "sister symptoms". They seem to be like symptoms of other ailments, mental problems or diseases when actually it is the mind and body breaking down. ADD and bi-polar are classic examples of this. Although I seem to have ADD and bi-polar, AND in fact been evaluated for these issues, I do not have them. OBS mirrors the symptoms. So, in that regard, getting back to the laughing... it annoys me, distracts me and I do not feel the joy that most people feel when they laugh. For example, if I am watching TV and my husband hears or sees something funny and he laughs, I easily get distracted and "feel" as if I missed part of the show.
Other sounds also bother me. Growing up, my home was pretty quiet. You wouldn't think so with 3 boys and 1 girl at home. But you see, my Dad was very sick all his life. And so for the most part, the house was kept quiet. The only noises I remember were what I called "controlled noise". Everything, everyone and every event; daily or festivity wise had it's time and place. Mom would play organ music while cleaning, Dad would play his country music when he, and I stress HE felt up to listening to it. Us kids had headphones. When we didn't have headphones, the music needed to be down really low to where you almost couldn't hear it. The television would be on when Mom or Dad turned it on. We were not allowed to turn on the tv by ourselves or change the channel. During the day if I were home on a snow day or non-school day, I would be put in front of the television. That's one of the reasons why I don't watch television that much. Also, the noise of it distracts me from whatever I am doing. However, at night, I have to have the tv on to sleep. Maniacal isn't it??
Yeah, so let's talk about music.
Growing up, as I said, I basically had headphones. Then I was pretty much fine with music until the past year or so. During that time, something has changed in me. I have found myself becoming more irritable, testy, annoyed easily and feeling a loss of control. This is where OBS is beginning to really rear it's ugly head. And it has become more clear to me everyday that OBS is beginning to be on the winning side and I am on the losing side.
Music and I used to get along. When the kids would turn music on, it wouldn't bother me, except for country music for a long time. That bothered me because when Danny and I separated in 2000 and we were apart for nearly five years, he met someone else and went to a club and danced to country music. Now, I have never seen him line dance or dance with her... I never met her at all... thank God... (there would had been blood shed for certain, can't stand the bitch.) but, knowing about what happened and knowing that he shared that with her (we never listened to country music that much together, except for Reba McEntire) I had pictures in my mind of the two of them and I could not stand to hear country music. It took me years since he has come back in 2004 to begin listening to country music. My mind tends to travel and goes through a endless time machine or an endless movie of the pictures I have made of my life. It often interferes with my daily life, my marriage, my parenting and just being. It can throw me into fits of depression, anxiety, even sometimes joy, excitability... I never know where I am going to be on the map that day.
As I have said before, most of this type of thing has been coming up in the past year or so. If I am working in my office, and someone turns on the tv or music, I tense up, my head fills with anxiety and feels like something was injected into it and makes my head feel very hard inside, swollen, uncomfortable. I try to ignore it, because other people who live in this house have a right to live! But I can't concentrate. I begin to make a huffing or sighing noise, I dart nasty looks in the direction of the person who I feel is invading my space. I keep trying to concentrate on my work at the computer or my bills or whatever it is I am working on and I tend to go blank. I recognize that I am getting annoyed and sometimes even angry, and I start a thought process in my mind to try to repair my thinking. I begin to talk to myself in my head and say to myself "Come on Yvonne, it's their house too, they have a right to live." or "You can do this. Try to refocus. You're going to run your family away and then complain later." It is a constant battle.
But the strange thing I have noticed about sounds is that if I turn on the music or the tv, I'm good. It appears to me to be a control thing; but I am not totally sure. I so totally do not want to be controlling. I did that once for awhile and it didn't feel good, I lost my marriage for a long time and it didn't give me any feel good silly stickers at the end. I like everything quiet, peaceful and serene. When I am working on the computer or doing something that requires the least bit of concentration, I need silence. Or talk to me when I am done. But... then this leads me into a sense of loneliness, depression and insecurities. Either way I go, I am damned. Playing tug of war with my mind is not easy. It is frustrating and tiring... I become much more easily exhausted just by trying to think about these struggles I am having. And this.... this is only the tip of the iceberg. There is so much more I battle with everyday in my life with OBS. Come with me on my journey, as I continue to take you into my personal world bit by bit with my worst enemy; OBS.
(The washer buzzer just went off, that was a noise.... it made me feel upset and annoyed because I was working on this blog entry and it interrupted me. I stopped and glared over to the vicinity of the cellar door. Normal people would just shrug it off and continue with their work and get to the laundry when they got done. With me, I feel as if it needs my immediate attention, being demanding in it's own little evil way. My right brain, the part that still functions properly as I think it does says to myself "Yvonne, it's a washing machine, forget it. It doesn't care if you never get down there to switch it over to the dryer." But I feel like it's a responsibility I must fulfill now, right now, or it won't ever get done and the thought of something sitting and not getting done bugs the hell out of me.) Welcome to my world!
Let's talk about sounds and how they affect me. From little on up.
When I was younger, I did okay. I was sheltered tremendously and went through many things no child should ever go through. But I found joy in the simple things of life that I would often escape to. That could be anything from my favorite doll Susie to Play-Doh, Crayola Crayons, Barbies, and a sandbox. I taught myself how to write cursive and would sit for hours on the floor in the TV room trying to make squiggly lines look like a letter. I was able to read and print write fluently by the age of four. I threw myself into books, reading a lot of Beverly Cleary when I was in 3rd grade on up. At 6 and 7, I was able to read The Wizard of Oz, Alice in Wonderland and titles in that same category of escaping and ending up in another world. These were not the picture books, mind you, these were the novels I was reading. At 8 and on up, I was intrigued by the Little House Series by Laura Ingalls Wilder. I was fascinated by anything old, antique or times of the past. I was never interested in the things my generation was interested in. First of all, I didn't know what they were. When I went to school, I felt like the oddball out. It always appeared to me that people were buzzing past me, chattering like monkeys, laughing; oh the laughing.... it was the one sound that annoyed me more than anything. Sometimes they were laughing at me and other times they were laughing amongst themselves about jokes or what happened the night before when "Ronnie" put "Tina's" head in the toilet, or laughing just because they were happy or amused. It was a sound I wasn't used to at home. To this day, I have a problem with the sound of laughter.
With OBS, depending on what stage one is at, you can get what I call "sister symptoms". They seem to be like symptoms of other ailments, mental problems or diseases when actually it is the mind and body breaking down. ADD and bi-polar are classic examples of this. Although I seem to have ADD and bi-polar, AND in fact been evaluated for these issues, I do not have them. OBS mirrors the symptoms. So, in that regard, getting back to the laughing... it annoys me, distracts me and I do not feel the joy that most people feel when they laugh. For example, if I am watching TV and my husband hears or sees something funny and he laughs, I easily get distracted and "feel" as if I missed part of the show.
Other sounds also bother me. Growing up, my home was pretty quiet. You wouldn't think so with 3 boys and 1 girl at home. But you see, my Dad was very sick all his life. And so for the most part, the house was kept quiet. The only noises I remember were what I called "controlled noise". Everything, everyone and every event; daily or festivity wise had it's time and place. Mom would play organ music while cleaning, Dad would play his country music when he, and I stress HE felt up to listening to it. Us kids had headphones. When we didn't have headphones, the music needed to be down really low to where you almost couldn't hear it. The television would be on when Mom or Dad turned it on. We were not allowed to turn on the tv by ourselves or change the channel. During the day if I were home on a snow day or non-school day, I would be put in front of the television. That's one of the reasons why I don't watch television that much. Also, the noise of it distracts me from whatever I am doing. However, at night, I have to have the tv on to sleep. Maniacal isn't it??
Yeah, so let's talk about music.
Growing up, as I said, I basically had headphones. Then I was pretty much fine with music until the past year or so. During that time, something has changed in me. I have found myself becoming more irritable, testy, annoyed easily and feeling a loss of control. This is where OBS is beginning to really rear it's ugly head. And it has become more clear to me everyday that OBS is beginning to be on the winning side and I am on the losing side.
Music and I used to get along. When the kids would turn music on, it wouldn't bother me, except for country music for a long time. That bothered me because when Danny and I separated in 2000 and we were apart for nearly five years, he met someone else and went to a club and danced to country music. Now, I have never seen him line dance or dance with her... I never met her at all... thank God... (there would had been blood shed for certain, can't stand the bitch.) but, knowing about what happened and knowing that he shared that with her (we never listened to country music that much together, except for Reba McEntire) I had pictures in my mind of the two of them and I could not stand to hear country music. It took me years since he has come back in 2004 to begin listening to country music. My mind tends to travel and goes through a endless time machine or an endless movie of the pictures I have made of my life. It often interferes with my daily life, my marriage, my parenting and just being. It can throw me into fits of depression, anxiety, even sometimes joy, excitability... I never know where I am going to be on the map that day.
As I have said before, most of this type of thing has been coming up in the past year or so. If I am working in my office, and someone turns on the tv or music, I tense up, my head fills with anxiety and feels like something was injected into it and makes my head feel very hard inside, swollen, uncomfortable. I try to ignore it, because other people who live in this house have a right to live! But I can't concentrate. I begin to make a huffing or sighing noise, I dart nasty looks in the direction of the person who I feel is invading my space. I keep trying to concentrate on my work at the computer or my bills or whatever it is I am working on and I tend to go blank. I recognize that I am getting annoyed and sometimes even angry, and I start a thought process in my mind to try to repair my thinking. I begin to talk to myself in my head and say to myself "Come on Yvonne, it's their house too, they have a right to live." or "You can do this. Try to refocus. You're going to run your family away and then complain later." It is a constant battle.
But the strange thing I have noticed about sounds is that if I turn on the music or the tv, I'm good. It appears to me to be a control thing; but I am not totally sure. I so totally do not want to be controlling. I did that once for awhile and it didn't feel good, I lost my marriage for a long time and it didn't give me any feel good silly stickers at the end. I like everything quiet, peaceful and serene. When I am working on the computer or doing something that requires the least bit of concentration, I need silence. Or talk to me when I am done. But... then this leads me into a sense of loneliness, depression and insecurities. Either way I go, I am damned. Playing tug of war with my mind is not easy. It is frustrating and tiring... I become much more easily exhausted just by trying to think about these struggles I am having. And this.... this is only the tip of the iceberg. There is so much more I battle with everyday in my life with OBS. Come with me on my journey, as I continue to take you into my personal world bit by bit with my worst enemy; OBS.
(The washer buzzer just went off, that was a noise.... it made me feel upset and annoyed because I was working on this blog entry and it interrupted me. I stopped and glared over to the vicinity of the cellar door. Normal people would just shrug it off and continue with their work and get to the laundry when they got done. With me, I feel as if it needs my immediate attention, being demanding in it's own little evil way. My right brain, the part that still functions properly as I think it does says to myself "Yvonne, it's a washing machine, forget it. It doesn't care if you never get down there to switch it over to the dryer." But I feel like it's a responsibility I must fulfill now, right now, or it won't ever get done and the thought of something sitting and not getting done bugs the hell out of me.) Welcome to my world!
Introduction to my world
Some days are better than others. Today is one of those days when I think that life is worth living for another day. At least for today. We shall see what tomorrow brings. I have not written in goons ages and I have lost what I needed to write. I think part of it is the computer. You type it into the computer and voila! You have lost the personal touch of a handwritten journal. I must admit though, that my handwriting isn't as nice as it used to be, especially if I am writing in a journal and tend to write fast. So perhaps, this may be better for my descendants to be able to read. But still, nothing like something handwritten.
I really wish I could dump what all I have on my mind. But there is something holding me back, and I know part of it happens to be my mother. I was never allowed to keep a journal when I was young. Although teachers encouraged it since as far back as I can remember. Even Patty Duke on the Patty Duke show had a diary. But my mother always kept telling me after she would read what I wrote: "Never write anything you don't want anyone to read." No personal thoughts, views or feelings. No matter how angry I got or bad I felt, what frightened me; I was never allowed to write it and feel ok. I could write light and airy things, like about marshmallows and fairy tales, how perfect my mommy is and things like that, but never anything about what bothered me. Or who I first kissed, or my most intimate thoughts. God forbid if I said anything negative. And so to this day, I keep worrying about hurting people's feelings. In the past when I was young, I did attempt to keep journals (or back then, we called them diaries). They always were found by my mother, read by her and confiscated. She still has them. I did venture writing in them personal things and it was used against me, held against me and a few other things. She even has the books I wrote to my children, of the letters I wrote to them while I was carrying them; and refuses to give them to me, or allow me to see them.
I don't know if I want to publish my journal. I do have that opportunity to with the program I am using. Again, I think I would worry about whom I'm writing about and what can I say or should I say. I reckon I can choose which journal entry to publish. That may work.
I just wish that people understood Organic Brain Syndrome and what it does to someone. I keep telling people to look it up. But I can see that they have done that and still do not understand the changes in my body, mind and soul that this disease has caused. Simply put, it has caused havoc in my life, both externally and internally. It is a slow, sad demise into an eternity of hell it seems. To watch the building blocks that I built as a child to become a woman and who I am today slowly rot and disintegrate is so frightening. Especially upon the eve of my first grandchild arriving. Upon watching my daughter Anneliese; whom I wanted to raise so badly, become a mother.... and my daughter Danielle; who is becoming a young woman, nearly ready to be a wife herself. My son James, who doesn't even know me... and I only know him enough to know that he is my son, the one I never got the chance to raise... to see his first steps... has stepped into adulthood without me once again. My children and my husband have no idea how hard I struggle to make memory pictures in my mind and keep them there in fear of losing them. Even my mom, I make memory pictures with her. My brothers too. But mostly, my children and my beloved husband whom I love more than life itself. My children are the blood that runs through my veins and if that ever dries up, I would simply die. I have experience with this first hand. When I was in high school, about to graduate... my father one morning, did not remember me. He did not know me. He did not know my mother. I had to go to school that day that way. It frightened me terribly, I felt lost. Even though he was lost, I felt lost too. It was like the notes on the blackboard for the next day's quiz were erased and I had no idea what the answers would be. Little did I know, that less than 3 years later, I would be diagnosed with a brain disorder. I was told that I was born with it, the two nerves in the back of my head are twisted and not straight up and down as they should be. My mother was with me, when they told me that I had a birth defect. She immediately went into a rage and defended herself desperately as if she were on death row and that this was her last appeal. It was never about me. It was always about her. I did not and do not blame her for what happened to me, but I guess she assumed it was her fault as she had a child who had a severe birth defect. In 1997, when my baby girl was 2 years old, I was then diagnosed with the dreaded Organic Brain Syndrome. I was lost one day with Danielle and I had a MRI done. They told me about the OBS (Organic Brain Syndrome), and that it was the beginning of Alzheimer's. I have the dementia side of OBS. Gray matter is splattered on my brain as if there is gray paint splattered on a perfectly painted piece of art. Those areas of gray matter are dead brain cells. Some of them are just dying.
I have to go for now, to get my housework done and some other things. But I will try to write again and the next time I write, I will write about the effects that OBS has on me personally. It will not be a pretty picture, but it must be said so that people can try to understand and maybe, just maybe, someone can help find a cure for it or to make another person with OBS feel better knowing that they are not alone.
I really wish I could dump what all I have on my mind. But there is something holding me back, and I know part of it happens to be my mother. I was never allowed to keep a journal when I was young. Although teachers encouraged it since as far back as I can remember. Even Patty Duke on the Patty Duke show had a diary. But my mother always kept telling me after she would read what I wrote: "Never write anything you don't want anyone to read." No personal thoughts, views or feelings. No matter how angry I got or bad I felt, what frightened me; I was never allowed to write it and feel ok. I could write light and airy things, like about marshmallows and fairy tales, how perfect my mommy is and things like that, but never anything about what bothered me. Or who I first kissed, or my most intimate thoughts. God forbid if I said anything negative. And so to this day, I keep worrying about hurting people's feelings. In the past when I was young, I did attempt to keep journals (or back then, we called them diaries). They always were found by my mother, read by her and confiscated. She still has them. I did venture writing in them personal things and it was used against me, held against me and a few other things. She even has the books I wrote to my children, of the letters I wrote to them while I was carrying them; and refuses to give them to me, or allow me to see them.
I don't know if I want to publish my journal. I do have that opportunity to with the program I am using. Again, I think I would worry about whom I'm writing about and what can I say or should I say. I reckon I can choose which journal entry to publish. That may work.
I just wish that people understood Organic Brain Syndrome and what it does to someone. I keep telling people to look it up. But I can see that they have done that and still do not understand the changes in my body, mind and soul that this disease has caused. Simply put, it has caused havoc in my life, both externally and internally. It is a slow, sad demise into an eternity of hell it seems. To watch the building blocks that I built as a child to become a woman and who I am today slowly rot and disintegrate is so frightening. Especially upon the eve of my first grandchild arriving. Upon watching my daughter Anneliese; whom I wanted to raise so badly, become a mother.... and my daughter Danielle; who is becoming a young woman, nearly ready to be a wife herself. My son James, who doesn't even know me... and I only know him enough to know that he is my son, the one I never got the chance to raise... to see his first steps... has stepped into adulthood without me once again. My children and my husband have no idea how hard I struggle to make memory pictures in my mind and keep them there in fear of losing them. Even my mom, I make memory pictures with her. My brothers too. But mostly, my children and my beloved husband whom I love more than life itself. My children are the blood that runs through my veins and if that ever dries up, I would simply die. I have experience with this first hand. When I was in high school, about to graduate... my father one morning, did not remember me. He did not know me. He did not know my mother. I had to go to school that day that way. It frightened me terribly, I felt lost. Even though he was lost, I felt lost too. It was like the notes on the blackboard for the next day's quiz were erased and I had no idea what the answers would be. Little did I know, that less than 3 years later, I would be diagnosed with a brain disorder. I was told that I was born with it, the two nerves in the back of my head are twisted and not straight up and down as they should be. My mother was with me, when they told me that I had a birth defect. She immediately went into a rage and defended herself desperately as if she were on death row and that this was her last appeal. It was never about me. It was always about her. I did not and do not blame her for what happened to me, but I guess she assumed it was her fault as she had a child who had a severe birth defect. In 1997, when my baby girl was 2 years old, I was then diagnosed with the dreaded Organic Brain Syndrome. I was lost one day with Danielle and I had a MRI done. They told me about the OBS (Organic Brain Syndrome), and that it was the beginning of Alzheimer's. I have the dementia side of OBS. Gray matter is splattered on my brain as if there is gray paint splattered on a perfectly painted piece of art. Those areas of gray matter are dead brain cells. Some of them are just dying.
I have to go for now, to get my housework done and some other things. But I will try to write again and the next time I write, I will write about the effects that OBS has on me personally. It will not be a pretty picture, but it must be said so that people can try to understand and maybe, just maybe, someone can help find a cure for it or to make another person with OBS feel better knowing that they are not alone.
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