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epilepsy has ruined my life.

Wed, 11/20/2013 - 17:14
epilepsy has ruined my life. and it pisses me off how people think nothing of the diagnosis. it doesn't get the attention it needs for sure. when i was a kid, i didn't plan to NOT get a drivers license. i didn't plan on spending money on medicine for the rest of my life. i didn't plan that in the future it would be life-threatning to cross the road, cuz what if i have a seizure there? i hate this shit, and pardon my french, but this shit is too much, and it needs to get way more attention.

Comments

Re: epilepsy has ruined my life.

Submitted by vande_2004 on Thu, 2013-11-21 - 11:46

Consider the fact there are always cases worse than your own.  Whenever I become depressed about having tried all of the meds and combos of meds available, surgery on LFL once and LTL twice, and the fact I was told "The readings of your seizures are higher than anyone at this institution or any of the 5 institutions it was forwarded to have ever seen.  Your next seizure could be your last."

Even through all of that, when in the hospital tested for surgery I seen patients who were in a lot worse condition than myself.  Their seizures were far from as extreme as mine, but their epilepsy was only the tip of the ice burg and they would never be able to live at home.  I could say "EPILEPSY HAS RUINED MY LIFE" and not be lying as I was an honors student up until high school.  At that time the seizures really took a turn for the worse and I underwent the first of many surgeries.  When someone sees me now they'd never believe I was one of the top in every one of my classes, as the seizures and surgeries have had a severe impact on my memory and speech.  Now I use all of my experience to council other patients considering surgery or VNS, help the Epilepsy Association by a countless number of newspaper interviews, newsletter interviews, and on TV once.  Next time you go to see your neurologist, look throughout the waiting room and when you see a patient whose condition is worse than your own use that to overlook your own condition and move forward.

Consider the fact there are always cases worse than your own.  Whenever I become depressed about having tried all of the meds and combos of meds available, surgery on LFL once and LTL twice, and the fact I was told "The readings of your seizures are higher than anyone at this institution or any of the 5 institutions it was forwarded to have ever seen.  Your next seizure could be your last."

Even through all of that, when in the hospital tested for surgery I seen patients who were in a lot worse condition than myself.  Their seizures were far from as extreme as mine, but their epilepsy was only the tip of the ice burg and they would never be able to live at home.  I could say "EPILEPSY HAS RUINED MY LIFE" and not be lying as I was an honors student up until high school.  At that time the seizures really took a turn for the worse and I underwent the first of many surgeries.  When someone sees me now they'd never believe I was one of the top in every one of my classes, as the seizures and surgeries have had a severe impact on my memory and speech.  Now I use all of my experience to council other patients considering surgery or VNS, help the Epilepsy Association by a countless number of newspaper interviews, newsletter interviews, and on TV once.  Next time you go to see your neurologist, look throughout the waiting room and when you see a patient whose condition is worse than your own use that to overlook your own condition and move forward.

Re: epilepsy has ruined my life.

Submitted by ral on Thu, 2013-11-21 - 12:19
That is a very positive and healthy way to look at the situation Vande.  Good for you if you are able to maintain that 24x7.  For me personally though, some of my most therapeutic moments are from taking the glass half emply approach & letting the angry inner beast run free.  Certainly we are all different and have different mechanisms to cope.  Sesat, we all certainly want to help you find what works best for you!

Re: epilepsy has ruined my life.

Submitted by fishergal on Thu, 2013-11-21 - 14:05
It's not that people don't think nothing, they don't know what to think. I knew a person who became a dear friend when she got cancer because her friends and family at the time could not process it. No biggie for me, I was still dealing with my parents' guilt trip from my diagnosis. Mine came indefinitely at 18 and I did have a driver's license, so I took scuba lessons, and when the definitive arrived before 19 well I dove the reefs of the Bahamas. How's that for rebellion and denial for you? I too was that honors student, beginning college to study marine biology, and I could no longer read at the volume required w/o having seizures. I was told instant death waited with every fall, etc. etc. etc. You know what? doctors have to warn you. It takes time to find the right medicine for you. Five years of hell for me. And sometimes you have to wait for the one that truly works. Only three years ago I actually found out what real sleep is and can read more. Life doesn't end. You just have to rework it in a different frame. I gave up scuba for backpacking. My "seizure dogs" have been untrained adopted mutts who in their own way let me know I'm not quite right. I never got to finish college, but I never stop trying to educate myself. I keep my limits, but I don't let them dictate to me my goals. If your friends and family don't understand, there will come new friends who do that look out for you when you can't look out for yourself. I've heard medicine changes you, although I didn't think so, but everyone around me is too many to argue with. I'm 57 now. I have lived my life, done and seen things some people never do because I didn't roll over and die, I found another way. I'm not rich, I work because I'm blessed in my level of limitations although the older I get the harder it all is..some days thinking is hard and motor functions damn near impossible because my brain has hit its limits.

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