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Medical Forum / Diseases and Disorders / Epilepsy / March 2004is your family supportive?
good morning. after weeks free from seizures i've developed a few. i had the VNS surgical implant on 11-20-03 and it activated on 12-05-03. the im- plant is working,but my family members and friends say"i thought you werent to have seizures anymore" i tell them for me it is working just the way it was inten- ded to!! i just want them to stop with the questions and accept the fact i still can have seizures even with the device!!!! i've accepted that fact and COMPLETELY SATISFIED with the way the device does stop seizures and if i do they are not as in- tense and also i'm more quickly recovered!!! please give give some feedback. my sister is very irate with me ecause i am satisfied with the way the device is working! thank you for your feedback. you also can e-mail me at my home. http://community.webtv.net/biblical1/ladymychihuahuaandi > good morning. after weeks free from > seizures i've developed a few. i had [quoted text clipped - 18 lines] > > http://community.webtv.net/biblical1/ladymychihuahuaandi I can understand both points of view in a way. I have a family member who gets frequent severe migraines. She saw a headache specialist who started a new pain control plan for her, and my relative is very happy with the results because she gets fewer headaches and they aren't as incapacitating as they were before. I wasn't very happy that the doctor's plan and the medications couldn't get rid of or prevent EVERY headache, but I've got to change my attitude and be happy because my family member feels so much better. Some medical conditions are never going to be fixed; all you can do is control them. Same with epilepsy. We have all these meds, devices, and so on to control it to whatever degree is possible, but there aren't that many things that CURE it. Maybe you can think of something that would be similar. For example, just because a person wears contact lenses and has excellent eyesight doesn't mean the visual problem is CURED. Do you get what I mean? Barb yes,i believe so and it is in the "Big Book" of the 12 step program on page 442 i be- lieve which i try to live by,though difficult. "Acceptance is the answer to all my prob- lems today--------". along with positiveness of attitude. i need to accept my families concerns as well as my own too,yet still for me live my life. "grey area thinking" and not "black and white thinking" God bless. lance g. arnold. http://community.webtv.net/biblical1/ladymychihuahuaandi My family or my friends aren't that supportive of my struggle to try to grasp control on my seizures. They think I over-exaggerate it, like not driving since the doctor said no or trying to stay away from majorly stressful situations. They think I am still "normal" and can do everything I used to do. Example- about a month ago, a friend and I got in a fight. I told her that I was not going to keep the fight up and stress my self out since it would only hurt me. She basically told me that stress would not bother me and that I just wanted to be felt sorry for. That hurt my feelings since we had been friends awhile. My family or my friends aren't that supportive of my struggle to try to grasp control on my seizures. They think I over-exaggerate it, like not driving since the doctor said no or trying to stay away from majorly stressful situations. They think I am still "normal" and can do everything I used to do. Example- about a month ago, a friend and I got in a fight. I told her that I was not going to keep the fight up and stress my self out since it would only hurt me. She basically told me that stress would not bother me and that I just wanted to be felt sorry for. That hurt my feelings since we had been friends awhile. --Adjustments are difficult for both you and those around you - and many will not want to "believe" your difficulties are real. I understand, now, the problems people can have with conditions that are not obvious much of the time, or which do not have easily/quickly-found test indications/proof that they are real (like Chronic Fatigue Syndrome, and the series of odd daily episodes I've experienced in the last five months ;-). It takes strength to be both open to all the possibilities, and also to hold onto what you know is right for you. It looks like you are doing this remarkably well, given your relatively short experience with these life-changing events. Sometimes it takes longer for others who care about you to also understand your changed condition, and what you need... -- David Ruether rpn1@cornell.edu http://www.ferrario.com/ruether David wrote: >many will not want to "believe" your >difficulties are real. I understand this all to well. >It looks like you are doing this remarkably well, >given your relatively short experience with >these life-changing events. Believe me when I say this, this is not the first thing I have had to deal with. It is that this one is just too personal in a way. I come from a very messed up family with enough twisted stories to supply the Jerry Springer Show for a few years. Howdy! My folks are supportive in different ways: my father treats me just like anybody else, my mother is overprotective. As far as my sisters are concerned, I'm pretty much an outcast. BTW: I'm 50  SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > good morning. after weeks free from > > seizures i've developed a few. i had [quoted text clipped - 35 lines] > > Barb My mother pretends it hasn't happened and has made no attempt to find out anything about it. As in most areas, her view is set in stone after 80 odd years and she was taught that epileptics live in loony bins. Maybe she feels guilty about having produced a child with epilepsy? So it is not a topic available for conversation. One brother asks occasionally but we meet maybe once a year. Other brother ran away from home in 1973 and I haven't seen him since. Not a close family! :) My cat was very supportive until he died. BTW: I am 46 SignatureMalcolm My family is supportive, but they all live hundreds or thousands of miles away and I don't see any of them more than once a year. I'm 38. > My mother pretends it hasn't happened and has made no attempt to find > out anything about it. [quoted text clipped - 11 lines] > > BTW: I am 46 >> BTW: I am 46 Dammit! Too young ... Mary >>> BTW: I am 46 > [quoted text clipped - 3 lines] > >Mary That's called "Heading them off at the pass." :( SignatureMalcolm I also want to add that you all have been the best support I have found. I feel like no one else really knows, except for the ones who have them. I just want to thank you all yet again and hope you all will stick by me (at least online, lol) through this time in my life. G'day, looks like you have started a bit of a census dave, for the record i'm 40. i have found my parents to be not so much over protective but overly concerned at times, which unnerves me because it means they are worrying about it. my brothers treat me like normal but seem to pick up the warning signs almost before i'm aware of anything. pablo > Howdy! > [quoted text clipped - 5 lines] > > BTW: I'm 50 Agreed. Since being diagnosed my parents (especially my mother) have become much more worried and overprotective. If I just sit down, seemingly exhausted (which happens) and lean my head back, she instantly ask if I'm getting a seizure. She asks on the phone if I'm getting enough sleep and enough to eat, etc. At some level it's a bit annoying, since I only get nocturnal seizures and at another level it's nice to know that /someone/ cares enough to worry (I live alone, so there's no one to tell me if I've had a seizure during the night). - Charlie (who's 28/female) > G'day, > looks like you have started a bit of a census dave, for the record i'm 40. [quoted text clipped - 3 lines] > signs almost before i'm aware of anything. > pablo My family has always been supportive of me with my epilepsy. Never in my life have I had any problems with any kind of discrimination or ridicule because of it, although my family's way of showing someone they love them is to make fun of them. In my case it's my epilepsy that they make fun of, though it's in a loving way. (I have a strange family). Even as a child, I was never ridiculed in school or given special treatment by the teachers. I don't know if it's because of where I live (New Zealand) maybe it's better accepted here than elsewhere, or whether it's because I've always been bigger than my peers ;-) but no-one has given me any greif about my epilepsy (to my face anyway). Well okay census time, I'm 38 male, my wife is 27 female. Our cats are 3yrs male and 3 months female. My favorite color is blue. I have blue eyes and brown hair, I'm six foot three and my wife is five foot one. Umm, I have hairy legs, though my wife doesn't. Usually. Cheers. Darryl. -- To reply, change daryl to darryl in address. "It's all fun and games till someone loses an eye" Quote: My Mum > Agreed. Since being diagnosed my parents (especially my mother) have become > much more worried and overprotective. If I just sit down, seemingly [quoted text clipped - 15 lines] > > signs almost before i'm aware of anything. > > pablo > Well okay census time, I'm 38 male, my wife is 27 female. Our cats are 3yrs > male and 3 months female. My favorite color is blue. I have blue eyes and > brown hair, I'm six foot three and my wife is five foot one. Umm, I have > hairy legs, though my wife doesn't. Usually. I'm 64, Spouse is younger. My hens are one year (Zen) and two years (Fang). My bees have died. Apart from being old I'm fat, opinionated and arrogant. It took us eight hours to drive home from Wales tonight and I'm exhausted. So are the hens. Goodnight, nice to be back :-) Mary > Cheers. > Darryl. [quoted text clipped - 27 lines] > > > signs almost before i'm aware of anything. > > > pablo Howdy Mary! This doesn't mean that hubby's going to throw the chickens at me if I make a pass, does it? SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > I'm 64, Spouse is younger. My hens are one year (Zen) and two years (Fang). > My bees have died. Apart from being old I'm fat, opinionated and arrogant. [quoted text clipped - 4 lines] > > Mary > Howdy Mary! > > This doesn't mean that hubby's going to throw the chickens at me if I make a > pass, does it? You're using that word again ... No-one would dare to throw my hens anywhere and no-one's made a pass for - ooh, must be easily the best part of some time, could be more. I'll send you a picture then you'll understand why. Except Spouse of course :-) Mary > > I'm 64, Spouse is younger. My hens are one year (Zen) and two years > (Fang). [quoted text clipped - 5 lines] > > > > Mary Howdy Mary! I've already seen your picture! What does that have to do with anything? SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > Howdy Mary! > > [quoted text clipped - 23 lines] > > > > > > Mary Besides... The lights will be off anyway! (Won't they?) :) SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy Mary! > [quoted text clipped - 29 lines] > > > > > > > > Mary > Besides... The lights will be off anyway! (Won't they?) :) Kinky! Mary > > Howdy Mary! > > [quoted text clipped - 30 lines] > > > > > > > > > > Mary >> Besides... The lights will be off anyway! (Won't they?) :) > >Kinky! > >Mary Wot, no video? :( SignatureMalcolm > Howdy Mary! > > I've already seen your picture! Have you? > What does that have to do with anything? If its genuine it shows that I'm not the type to be made a pass at - sorry for the grammar. Mary > > > Howdy Mary! > > > [quoted text clipped - 25 lines] > > > > > > > > Mary Howdy Mary! Well... I THINK I've seen your picture! Don't you have a website? I thought that I'd seen your website, maybe it was somebody elses. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy Mary! > > Well... I THINK I've seen your picture! > > Don't you have a website? I thought that I'd seen your website, maybe it was > somebody elses. We have a website but there are no pics on it. I'll send you one. Mary :-) > > Well okay census time, I'm 38 male, my wife is 27 female. Our cats are > 3yrs [quoted text clipped - 47 lines] > > > > signs almost before i'm aware of anything. > > > > pablo Since we're all admitting our ages, I'm 56. Hubby is three years older than me, and my children are in their thirties. No grandkids yet. Barb > Since we're all admitting our ages, I'm 56. Hubby is three years older than me, > and my children are in their thirties. No grandkids yet. A friend wrote at Christmas to say that he was now a great grandfather. I was surprised - until I remembered that he's 70 and his daughter had her baby at 15. Then I worked out that our oldest (of eight) grandchildren, at 18, could be parents soon and so we'd be great grandparents. And my mother, at 91, would be a great great grandma. Cor! Mary > Barb > My family has always been supportive of me with my epilepsy. Never in my > life have I had any problems with any kind of discrimination or ridicule [quoted text clipped - 6 lines] > bigger than my peers ;-) but no-one has given me any greif about my epilepsy > (to my face anyway). i can't remember being ridiculed at school ever though i never really had a seizure in oublic at that stage. only once in my adult did anyone say anything partiicularly derogatory about my condition, and before i could reply one of my freinds who happened to be their smacked him one under the lug. pablo > i can't remember being ridiculed at school ever though i never really had a > seizure in oublic at that stage. only once in my adult did anyone say > anything partiicularly derogatory about my condition, and before i could > reply one of my freinds who happened to be their smacked him one under the > lug. LOL! Love it! Mary > pablo >Never in my life have I had any problems with >any kind of discrimination or ridicule because >of it I have only been having my grand mal seizures since September and the "absence seizures for over a year, and I have already been discriminated against. It occurs everyday. I see it mostly at school. Some believe it is "crazy" made-up disorder and the others who know what it is usually choose not to hang around me too much. I guess they figure they will either "catch" ssizures or be made-fun of for having a friend like me. I have lost a lot of buddies this year. I might have five people there who are still friends with me and are supportive. I do also see some discrimination (mostly being treated different, not hatefully) in my family too. Here, some treat me like this fragile piece of glass that could break at any moment and others see it as a weird disorder in which I asked for and even others have stopped talking to me. I hate all the "weird-ness" and "hate-ful-ness" people treat me with any more. You must be lucky, daz_n_pat to have such supportive people around you. > >Never in my life have I had any problems with > >any kind of discrimination or ridicule because [quoted text clipped - 8 lines] > ssizures or be made-fun of for having a friend like me. I have lost a > lot of buddies this year. They're not good buddies if they treat you badly, you're better off without them. Sounds hard, I know, but you really do get to know who your friends are when adversity hits. > I might have five people there who are still > friends with me and are supportive. Dawn, a wise woman once told me that if you can count of five absolutely true friends who will stick to you through thick and thin you are exceptionally lucky. I scoffed. I've learned that she was right. > I do also see some discrimination (mostly being treated different, > not hatefully) in my family too. Here, some treat me like this fragile > piece of glass that could break at any moment That's because they do care and want to protect you. It might be through ignorance but it's a Good Thing, not a bad. > and others see it as a > weird disorder Well it is! :-) > in which I asked for and even others have stopped talking > to me. They can't cope, be sorry for them. I learned to do that when I was diagnosed with cancer and my mother and two sons couldn't face me - because they couldn't handle the situation. It passed. They're all now more supportive than before! > I hate all the "weird-ness" and "hate-ful-ness" people treat me > with any more. You must be lucky, daz_n_pat to have such supportive > people around you. No, there is discrimination all round everyone, whatever their 'differences' from 'normality'. some of us just don't recognise it, some dismiss it, some understand it, to some it's unimportant. It's largely up to you (sounds hard that but it's true) to learn to find the best in people and not to be concerned by anything else. Life is not a bed of roses for anyone, if you think that even without this condition you can sail through life with everything being good you've got some hard times coming. This is the first for you and it can be a great learning experience - if you let it be. Dawn, I know that because compared with you I'm old and have lived a very - er - interesting life :-) And I don't think I'd change any of it. Hugs, Mary Mary wrote: >They're not good buddies if they treat you >badly, you're better off without them. Sounds >hard, I know, but you really do get to know >who your friends are when adversity hits. I realize that they were not true friends, considering. It is just hard to go from thinking you have a lot of friends to having just a few. I have never had a "lot" friends, but it has been a long while since I have had this few. >Dawn, a wise woman once told me that if you >can count of five absolutely true friends who >will stick to you through thick and thin you are >exceptionally lucky. I scoffed. >I've learned that she was right. I was just guessing last night at five. I think I have two friends that I can truly talk to and one more than the other. I think sometimes they get tired of having to be the ones picked by me to lean on. They never say anything, but I can just sense it. >That's because they do care and want to >protect you. It might be through ignorance but >it's a Good Thing, not a bad. It is not always good. By my parents, my mom treats me like I am about three years old sometimes and sometimes thinks that I asked to get my condition; my dad mostly thinks the second part. I know precautions have to be taken, but some of my mom's get silly. >They can't cope, be sorry for them. I learned >to do that when I was diagnosed with cancer >and my mother and two sons couldn't face me >- because they couldn't handle the situation. It >passed. They're all now more supportive than >before! I am sorry you have cancer; how bad is it? The way some of my family treats me is like I must be a loony tune to have this disease and they want nothing more to do with me. I am basically one of my family's outcasts by some of my family that I thought truly loved me. They must have been good actors. >This is the first for you and it can be a great >learning experience - if you let it be. Dawn, I >know that because compared with you I'm old >and have lived a very - er - interesting life :-) This is definitely not the first hardship I have been through, Mary. You do not want to know all the details of my family and my life unless you are willing to see a psychiatrist afterwards, and I am not joking one bit. This has just been a harder one to grasp, considering there is little I can do about it and it could stay with me long term (and not be able to forget about it for awhile). I doubt your life has been any worse than mine or some of my family's. Some of my messed up family story goes back more than fifty years and some of the consequences have only been showing up here lately. Most of everything (up to a year ago til now when I found out most of it) I have known has been a lie. It is a lot to deal with and sort through your mind. > Mary wrote: > [quoted text clipped - 7 lines] > have never had a "lot" friends, but it has been a long while since I > have had this few. It's one of the steps in Life's journey. You're fortunate to have learned it while you're young and can bounce back more easily, I promise you that it's more devastating when you're older. > >Dawn, a wise woman once told me that if you > >can count of five absolutely true friends who [quoted text clipped - 6 lines] > get tired of having to be the ones picked by me to lean on. They never > say anything, but I can just sense it. You are fortunate. Look after them - be their friends too, even if you get tired of being leaned on by them. It might happen, you never know. You're even more fortunate because you're admitting that you THINK you have two friends ... :-) You're learning. And I'm not patronising you. > >That's because they do care and want to > >protect you. It might be through ignorance but [quoted text clipped - 4 lines] > condition; my dad mostly thinks the second part. I know precautions > have to be taken, but some of my mom's get silly. You might well be protective of your children, in fact I'm sure you will be. And I know that your children will think that you're over protective and even silly and resent it ... it's a fact of good parenthood. As for your mom treating you like a three year old, so does mine! My mother is 91 and I'm 65 and I still feel like a naughty little girl. Until recently I didn't like opening letters from her because I knew she'd be telling me off about something I'd done which she thought was wrong. But that's mothers - I know that our 'children' (44, 42, 41, 38, 36) think the same about me. They joke about it, they're lucky in that I accept their jokes, I could never joke with my mother ab out our relationship. You probably can't either but it's a great lerning experience and could make you a better mother :-) Our eight grandchildren joke about us too but still respect us. And I think they genuinely love Grandpa and Grandma too, they say they do, they behave as though they do even though we're always telling them off. > >They can't cope, be sorry for them. I learned > >to do that when I was diagnosed with cancer [quoted text clipped - 4 lines] > > I am sorry you have cancer; how bad is it? That's irrelevant. I'm still here and loving life. The apparent (although temporary) loss of support of my mother and sons was by far and away the worst part of the experience. Their subsequent strengthened love has been the best. > The way some of my family > treats me is like I must be a loony tune to have this disease and they > want nothing more to do with me. I am basically one of my family's > outcasts by some of my family that I thought truly loved me. They must > have been good actors. No, they love you, they simply don't understand. Ask yourself whether you've ever thought that someone was a 'loony tune' - be honest. Don't answer here, just to youself. And then ask yourself why? Perhaps it was because you didn't understand their condition - or their anguish. As for being an outcast - I've been that for all my life albeit for different reasons. It can be fun - who wants to be like everyone else! > >This is the first for you and it can be a great > >learning experience - if you let it be. Dawn, I [quoted text clipped - 7 lines] > little I can do about it and it could stay with me long term (and not be > able to forget about it for awhile). If this is the worst thing you have to live with you'll be lucky. > I doubt your life has been any > worse than mine or some of my family's. I didn't say it was, I reckon I've had a wonderful life despite hardships and grief - and it gets better all the time. No, seriously, despite failing mental and physical abilities, the riches of life still outweigh the paucities. Difficulties overcome lead to strengths, not weakness. > Some of my messed up family > story goes back more than fifty years and some of the consequences have > only been showing up here lately. Most of everything (up to a year ago > til now when I found out most of it) I have known has been a lie. It is > a lot to deal with and sort through your mind. Indeed. But you're not unique, I've come to accept that there are skeletons in everyone's cupboard. They're covered up - lied about - for various reasons. I bet you're not always as open about your actions and feelings as you could be. That's the main reason I've been one of society's outcasts - and certainly the black sheep of my family and the one I married into: because I tell the truth, because I don't hold back. I describe myself as old, fat, opinionated and arrogant. It gets me into all sorts of trouble because the truth is often unacceptable and people prefer to cover it up for an easy life - they mostly say it's so that it doesn't hurt others or that they don't want to rock the boat. Covering up means lying even if only by omission. But my head is still fixed to my shoulders even though it's been on the block very many times :-) We are the authors of our own destiny, you must choose how to live your life within your particular circumstances and then stick to what you've chosen - until you realise that there might be a better way. I know that at the moment you probably think that you know everything and that no-one else understands or even cares. None of those things is true, but make the most of it while you can. The older you get the less you'll know. And make the most of this ng. Mary Dear Mary: I just want to let you know that I admire your attitude and the advice you have given to Dawn. Keep it up - the world needs people like you. Dawn, listen to her! She knows what she's talking about! Hilary > > I realize that they were not true friends, considering. It is just hard > > to go from thinking you have a lot of friends to having just a few. I [quoted text clipped - 116 lines] > > Mary Mary wrote: >You are fortunate. Look after them - be their >friends too, even if you get tired of being >leaned on by them. It might happen, you never >know. That is the crazy thing. They never seem to need me to help them out. That is why I usually try not to burden them with my problems. I don't feel that it is fair. >I could never joke with my mother ab out our >relationship. You probably can't either Like I said in my last post, I am sometimes treated like a three year old, but other times my parents get it in their mind that I must have asked to get this disorder, like I wanted it. In some ways, my mom is truly ashamed she has daughter that basically does have epilepsy. I can just see it in the way she acts and she has even admitted it a few times. This hurts the worst, to have people be ashamed of you for something you can not do anything about. >If this is the worst thing you have to live with >you'll be lucky. This has not been the worst thing that has ever happened to me (by far!!!!!!!! you don't want to know. if you truly want to, then e-mail me and i will tell), but I can do the least about this one. >And make the most of this ng. I have been. > Mary wrote: [...] > I was just guessing last night at five. I think I have two friends that > I can truly talk to and one more than the other. I think sometimes they > get tired of having to be the ones picked by me to lean on. They never > say anything, but I can just sense it. Sometimes it helps to "blab" about this stuff until you almost drive all friends/acquaintances/strangers away - but it can't always be helped. I found a local counseling service with a good person there four days a week to "yak at" - she has been great! There may be something like it near you (Suicide Prevention, an "Independence Center" [for disabled people], or somesuch). Try calling social-services or something like that - they may be able to guide you to people who can just listen when you need to "blast off". ;-) [...] SignatureDavid Ruether rpn1@cornell.edu http://www.ferrario.com/ruether i know what you mean by not having the support that you need. my son has progressive myoclonic epilepsy and we are considering VNS for him. i didn't even want my husband to tell his family that we were considering the surgery, because they to would expect that it would "cure" our son. we are being realistic, we know that there is only 1/3 of a chance that it is going to work, but we are willing to take the chance that it will work even a little bit. our son is 16 years old, though mentally he is about 2 years old, so we have to make the decisions that we think are in his best interests, my husband's family always tries to second guess our decisions, even though the know very little about his condition. i hope that your family will come around and be supportive for you. i am sure that you have already given them a lot of information about VNS, maybe you should tell them to re-read the information. (we have had to deal with their second guessing us for 20 years,ever since our oldest son was diagnosed with epilepsy) |
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