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UPDATED: Wed, 06/25/2008 - 7:35pm
kevinmo99
life and how it sucks
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It is a wonderful thing when you work all your life to do the right things. And all the world does is poop all over you. I have tried to do the right things i got a 4.0 grade average in school and cannot get a job because the state does not know what to do. I have a daughter who hates me cause i am concerned on where she will be living in a few days. I have good little church people spreading rumors about me because i stood for the truth and not lies. I feel like just ending it but will not because that is not right either . But i can not go on like this . Why do nice people always finish last.
By kevinmo99 at Wed, 06/25/2008 - 7:35pm | 87 views | 7 comments
Topic: Men With Epilepsy
Recent Comments on this Discussion
Kevinmo99,
Look, brother, the excruciating pain that you are being forced to endure may make torture tactics like waterboarding sound like a pleasure right now, but don't end it. You must pick yourself up and find some way to fight. I had a friend in high school who did end it and to this day all I can do is ask why. He didn't have epilepsy nor any other chronic or fatal condition like us but one day just decided he had had enough of this unfair world. However, he could have done a lot of good, even if in small proportions. So why did he do it?
And that's my point: you are part of this gigantic system, even if you are only a small part. Which means, of course, you are important in some way. If you were truly not important, would anybody have any reaction towards you whatsoever? Don't let your frustrations overwhelm you. Keep believing in yourself but look for a new way to contribute.
What about me? I am an American living in Japan who had a grand mal at work and suddenly the company decided to outsource my branch. I have 3 kinds of seizures and take the 3 types of drugs that I am currently taking have severely limited my employability right now considering how much education I have (2 Master's degrees, both with 3.9 GPAs) because during interviews I cannot answer questions as fast as other people because of these medications. Heck, my hands now shake so bad I can't hold a glass of water. It freaks people out. One time I had an interview where I had to speak nothing but Japanese but right before I went in I had one of my blackout seizures and couldn't even remember my own name, much less remember any Japanese. Blew the interview because of epilepsy. Nonetheless, I am shifting what I am doing from network engineering to more web design. It's not my first pick, but I am still good at it and I can do more at-home contract work that way on my own schedule. Yes, my brain still has seizures that are uncontrolled. Now I am taking more of a proactive approach towards them. Hopefully, I can start my own IT business.
Yeah, many times I've gotten frustrated but I've cried my tears dry. As sawyer said below, our brains just won't work right. It's not our fault. We have a disability and there's nothing we can do about it but manage ourselves, including our emotions.
KEEP FIGHTING - you will succeed.
Kevinmo99, boy do we hear you. You have a lot of company, my man. Hopefully, that fact alone will be somewhat encouraging for you. My story? I'm 56. I worked my tail off all my life to get good grades, went to a good law school, finished close to the top of my class, worked my tail off even harder in a very stressful profession and made partner at a big top tier law firm (which ain't easy), and then .... out of the blue I had a gran mal seizure in 1994. It's been downhill from there. The meds (Dilantin, Lorazepam) controlled the seizures, but there was nothing to control the meds; i.e., I suffered every side effect in the book from Dilantin. Among them, I am always extremely fatigued, I got the unwanted body hair side effect in recent years which makes me look gross, I can't get to sleep before 6 am, and then I have very disturbing dreams, etc. etc. Worse, from day one, these drugs have significantly impaired my mental acuity and my my memory. Mental acuity and a great memory are THE two most important assets a lawyer must have, especially me as a partner handling big deals and who was expected to bring in big revenue for my large firm. My solution was to work more and more hours, and more and more days. Wasn't unusual for me to work 12-14 hours a day, 7 days a week for 3 weeks straight, just trying to accomplish in a competent fashion what I used to be able to do in 10 hours a day, 5 days a week. All of this made me even more exhausted than usual. I still was practicing competently, but I just couldn't work enough billable hours. I became a part-time partner, then had to give up my partnership, and then became a part-time contract attorney at the firm. Even that was too much, and 5 years ago I had to go on disability because I no longer could cut the mustard. I tried every other drug available, but nothing helped. Worse, Dilantin makes me very irritable and moody, even when taking a drug like Prozac. Started to experience erectile dysfunction in recent years, so I went off the Prozac for awhile, and then after a lot of testing the doctors realized it was the Dilantin and Lorazepam causing the problem, but nothing helps. So, my sexual life went to zero, which was a huge blow since I've been married almost 30 years. My fatigue is so extreme that I've missed every family outing and vacation for the past 5 years (I have 2 kids in high school). There's a lot of pressure is on my wife to help support the family and hold things together. My erratic, grumpy behavior (solely dued to Dilantin; I used to be a sweet guy, even for a lawyer) has alienated my family, to the point where I just moved out of my house into an apartment so my family can get some relief from me. It's the pits. But Kevinmo99, you and I have just gotta hang in. It's not our fault that we got nailed by this lousy condition. We did nothing to ask for this. The God of Other People didn't see fit to equip us with the right stuff. But we need to give each other support. There's just got to be hope for us. The alternative of ending it IS worse. You and I and the millions worldwide in our boots can't give up just because we're not a member of the genetically blessed club. We are of the world, but not mainstream participants in it, it's true. But we have a large brotherhood and sisterhood who really, really understand us and get it and love us with all our issues -- namely, all the epileptics out there who suffer daily with this tough, tough condition. Grab whatever minor bit of life that makes things bearable in the moment. For me, it's car magazines, TV (lots), i-Tunes, good salads, whatever can make the day pass. Because there ARE those moments when I really laugh at movies (Superbad!), or love the cars I read about. I want to continue to have those moments even though I may be blue a lot of the day, or feel isolated, misundertstood and alone. Hang in. We understand you. Our brains just don't work right. Not our fault. Try to control the bitterness and the anger. Everybody else's brain works different from ours, and no matter how you slice it, it IS hard to fit in or get them to understand us as we are. BUT HANG IN. With age comes perspective.
Thanks alot sawyer your post has really helped me realise a few things in my life :) again thank you!
marcfl.
sawyer, I too have had difficulties w/ erectile dysfunction since taking dilantin/phenytoin, which , like you, has made a big difference in my now 25yr marriage (and not a positive one). Initially the dilantin link wasn't realized, so there were some ugly times about that. I had read in a few websites and blogs about a dilantin/ED link, and brought it up with my neurologist, who dismissed it out of hand. My primary care physician has prescribed Viagra, Cialis, and Levitra at different times, with very infrequent success. My NP suggested counseling as a last resort, which I eagerly consented to try, but it has been useless as well.
Nothing about this is mentioned in teh dilantin package insert. I'd like to ask you, a) how did your physicians isolate phenytoin as the cause, and b) have you had any success in treating it?
I picked this item out of your letter because of all the denial I've run into, and the issues this has caused at home in my not-what-I-thought-it-was marriage. Apart from that, YES, I have also suffered from noticable loss of mental acuity and short-term memory difficulty. Everyone shrugs it all off as age-related (50), but I know it is more than that.
Thanks,
I understand too much how you feel. Epilepsy decided to hit me when I was in my mid 30's. There was only one semester in my years of school where I didn't have a 4.0 GPA, and even then, it was in the high 3's only because of one class. I was recently put on disability, so I can't work even if I want to. They tell me I'm allowed to work @ home or on-line. Real work @ home jobs are non-existent. I've been looking for work @ home or on-line, but have not found anything that is real, most of them are rip-off's. Luckily, I don't have any kids who have to live with the h e l l of Epilepsy that I live with. I have not had a life for more than 10 years because of the limits of things I'm allowed to because I have Epilepsy. If anyone knows of any work @ home jobs that aren't a scam, I'd love to know what they are.
Hi Seruzies
Not very fun I know, but I think a lot of call centres (as in Market Research or Telesales) let you work from home these days.
Jess
I'm still looking into it, but just about everything I've come across has turned out to be a scam. If anyone else tries to go this route, look into a prospective employer before you commit to anything, especially if they want money up-front to start your "business", if they do, they are just giving you the business.