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Resentment
Tue, 12/21/2004 - 23:41Does anyone else feel a level of resentment from family for the time, cost and energy that your epilepsy seems to take?
Everyone says they understand and know that the meds and stuff are necessary - but when the bills come due and you also have $125 worth of perscriptions that need filled - it always seems to come up. Not to mention higher insurance costs and co-pay for regular doctor visits or lab fees to run med levels.
I am beginning to feel that it is the biggest single drain on our income - although I know it isn't. I does prevent us from saving or spending those dollars elsewhere but that can't be helped. Am I being over sensitive?
I was coasting along in happy limbo until the side effects of the meds I have been on for these past 30 years (Dilantin & Mysolin {now on generic forms}) began to also cost us a lot of money. How? Lowered bone density (tests to determine that), broken elbow two years ago, broken arm this year, weakened knee (hey I am an active person), loss of teeth (top gone 3 years - bottom need to go), HRT meds that are countered by D & M so I have to take more.....does it end? What else is happening that I don't know about yet?
I want to go back through the testing and diagnostic proceedures to see where I am today - 30 years later and 30 years older and certainly 30 years different. All we have done for 30 years is monitor my med levels because the seizures have remained under control. There may be far more options then we are even aware of!
That will cost money and time and energy again......and I will probably have to go back through some of the experiences again. That scares me! Maybe that scares my family too so we have all become pre-occupied with money and drugs and seizures......
Pep talks? Advice? A soft shoulder to cry on? A kick in the ass? Give me whatever I need here. The strong part of me is not keeping up with the other parts right now!
Thanks........................Lee
RE: RE: Resentment
Submitted by Gretchen on Tue, 2004-12-21 - 23:41
Lee I can't tell you what testing you might have. I think different facilities or doctors do things differently, prioritize one test over another. Also it depends on what you're being tested for and what is already known about your epilepsy. For instance I went to a foreign country for about a month and since it's a country known for parasitical water? I got to have ......brain f*rt...sorry.... small specimens taken from my brain and other organs to make sure my epilepsy wasn't worsening because of parasites. I've been tested in every way I think is known, and then tested again and again as my condition has changed and I'm still always being tested now because I'm having chronic toxicity, liver and pancreas function problems as well as peripheral neuropathy in my feet from the ONE AED I can take. Testing for all of that is ongoing, not predicted by me. Life's a bitc*, at times, still I do have a life too. I hate it when some one sugar coats epilepsy. On another chat line someone wrote once that epilepsy was the best thing that ever happened to her because it made her a better person. My take on that? First, there are a lot of ways I could become a better person and I sure as heck wouldn't have picked THIS way to get there! Second? She must not have the epilepsy I'm thinking about, or she has delusions, or ...what? That to me is unrealistic and sugar coating. I don't like it and I have to wonder too, is this person having SUCH a hard time with their epilepsy they're in some kind of denial? This dang thing has screwed up the nice life I had but I am in a constant state of gaining back my mental health that took an abrupt nose dive, loss of relationships, my self esteem, all the rest and it's been hard and I don't maintain the gains I've made on every single day. As long as I don't give up the fight and keep moving in a forward direction I figure it's the best I can do, but I don't keep a cheery little attitude every day, I'm not able to.
Epilepsy is in my family. I've been on the other side of the fence. I firmly believe when one member in a family that lives together, not a "phone call family member" gets epilepsy, everyone is effected in some way. I also believe some family or friends can handle it, some can't. My husband can not. I'm soon leaving and divorcing him. He had underlying mental health issues he didn't deal with before I got this. I'm sick of the guilt he puts on me. His outbursts. His inability to adjust to the many things we've had to do. I have made a huge effort to adjust and I'm making ground and hope I continue to do so. It's mentally lethal for me to be around the one person I live with - who is making me feel like a subhuman and expects me to understand how I make him feel the way he does and say the horrid things he has to me. GET REAL! I have a problem. But so does he. Often lately I feel my problem, severe epilepsy, is far less a problem then his intolerances and lack of ability to hear me when I have told him of the many ways he's hurt me, and undermined me working on regaining my mental health.
He has health issues that are more dangerous than my own but aren't as visible. One of them can and in his case probably will cause either a heart attack, stroke or dementia in the next few years. Atherosclerosis which he has severe. Other health issues too but they're not visible. Epilepsy, my epilepsy is very visible. Now I wonder how he'll feel when I'm gone and he needs just ONE person to be at his side, understand, use tolerance, take the good with the bad?
I've tried very hard to get jobs, even volunteering has been turned down because of the amount of seizures I have but every year I see more mental health in myself but I've had to work very hard at it and I've been hit hard too. I'm darned proud of where I am at right now emotionally and it's been a real struggle. I can't afford to live with someone who is chronically eroding the gains of the very hard struggle I have, will always have, because I do go out in this world and I will always expect to be treated as a mature adult with feelings.
Bless those who do support me though. These people stand out as shining stars to me, cherished and treasured.
Lee I can't tell you what testing you might have. I think different facilities or doctors do things differently, prioritize one test over another. Also it depends on what you're being tested for and what is already known about your epilepsy. For instance I went to a foreign country for about a month and since it's a country known for parasitical water? I got to have ......brain f*rt...sorry.... small specimens taken from my brain and other organs to make sure my epilepsy wasn't worsening because of parasites. I've been tested in every way I think is known, and then tested again and again as my condition has changed and I'm still always being tested now because I'm having chronic toxicity, liver and pancreas function problems as well as peripheral neuropathy in my feet from the ONE AED I can take. Testing for all of that is ongoing, not predicted by me. Life's a bitc*, at times, still I do have a life too. I hate it when some one sugar coats epilepsy. On another chat line someone wrote once that epilepsy was the best thing that ever happened to her because it made her a better person. My take on that? First, there are a lot of ways I could become a better person and I sure as heck wouldn't have picked THIS way to get there! Second? She must not have the epilepsy I'm thinking about, or she has delusions, or ...what? That to me is unrealistic and sugar coating. I don't like it and I have to wonder too, is this person having SUCH a hard time with their epilepsy they're in some kind of denial? This dang thing has screwed up the nice life I had but I am in a constant state of gaining back my mental health that took an abrupt nose dive, loss of relationships, my self esteem, all the rest and it's been hard and I don't maintain the gains I've made on every single day. As long as I don't give up the fight and keep moving in a forward direction I figure it's the best I can do, but I don't keep a cheery little attitude every day, I'm not able to.
Epilepsy is in my family. I've been on the other side of the fence. I firmly believe when one member in a family that lives together, not a "phone call family member" gets epilepsy, everyone is effected in some way. I also believe some family or friends can handle it, some can't. My husband can not. I'm soon leaving and divorcing him. He had underlying mental health issues he didn't deal with before I got this. I'm sick of the guilt he puts on me. His outbursts. His inability to adjust to the many things we've had to do. I have made a huge effort to adjust and I'm making ground and hope I continue to do so. It's mentally lethal for me to be around the one person I live with - who is making me feel like a subhuman and expects me to understand how I make him feel the way he does and say the horrid things he has to me. GET REAL! I have a problem. But so does he. Often lately I feel my problem, severe epilepsy, is far less a problem then his intolerances and lack of ability to hear me when I have told him of the many ways he's hurt me, and undermined me working on regaining my mental health.
He has health issues that are more dangerous than my own but aren't as visible. One of them can and in his case probably will cause either a heart attack, stroke or dementia in the next few years. Atherosclerosis which he has severe. Other health issues too but they're not visible. Epilepsy, my epilepsy is very visible. Now I wonder how he'll feel when I'm gone and he needs just ONE person to be at his side, understand, use tolerance, take the good with the bad?
I've tried very hard to get jobs, even volunteering has been turned down because of the amount of seizures I have but every year I see more mental health in myself but I've had to work very hard at it and I've been hit hard too. I'm darned proud of where I am at right now emotionally and it's been a real struggle. I can't afford to live with someone who is chronically eroding the gains of the very hard struggle I have, will always have, because I do go out in this world and I will always expect to be treated as a mature adult with feelings.
Bless those who do support me though. These people stand out as shining stars to me, cherished and treasured.