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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 just_joe on Thu, 2013-11-21 - 14:28

Sesat

Epilepsy did not ruin your life. It may have made you take another road to your goal. You seem to think your life is all over and you can not do anything. Do yourself a favor dream and make goals. I have been doing that for 50+ year after being diagnosed. Now I have reached many goals. I may have had to take turns others didn't have to or there may have been a few bumps in the road but dreams and goals can and are met daily by people who have other issues that are far worse then having epilepsy

We all know what it is like to want things to be perfect but life is never perfect. I know what it is like not to drive. I also know that there are many people with epilepsy who can and are driving. As for planing not to do this or that we are never garunteed anything.

If you think you have it hard today you need to look at some history. If you think it is bad now check with your neuro and other doctors. Back in the 1960's people with epilepsy were still being put away in homes. In the 1970's some states were not letting people with epilepsy get marriage licenses.

Go to a corner and watch people crossing the street going in any direction. You see many people with handicaps. Some with canes or walkers, others wearing glasses, Some with hearing aids. Don't forget those with seeing eye dogs. Now think about all the other people crossing. Can you see the diabetics? Did you notice the people who have heart disease? What about the other people who are crossing who have the same thing you are comlaining about did you see the people with epilepsy crossing? Understand that all of those I listed did not plan to have their issues either. As for breast cancer and their funding you might want to check out how long they have been around. If you had you would have seen that they have been out and nationally for about 25 years. Our National drive has only been around for 4 years. So we do have a lot to do and we are getting there.

Have you talked to the leadership in your town? Have you sent letters ti newspapers in your town letting them know that this month was epilepsy awareness month. If you haven't then why haven't you? It was not planed that I have epilepsy but a blow to the head is what caused mine. Ever get hit in the head?

You did not post the type of seizures you have nor did you post the medications you take. You also did not post how long you have been having seizures.

I know what it is like not to have a drivers license. I also use some common sense. What would happen if you were driving and hada seizure? What would happen if you did not take your medication.

You may think I am being hard but it was not the point I was trying to make. We all know what it is like to deal with epilepsy. I have been living and dealing with it probably twice as long as you have been alive. 

I hope this helps

Joe

Sesat

Epilepsy did not ruin your life. It may have made you take another road to your goal. You seem to think your life is all over and you can not do anything. Do yourself a favor dream and make goals. I have been doing that for 50+ year after being diagnosed. Now I have reached many goals. I may have had to take turns others didn't have to or there may have been a few bumps in the road but dreams and goals can and are met daily by people who have other issues that are far worse then having epilepsy

We all know what it is like to want things to be perfect but life is never perfect. I know what it is like not to drive. I also know that there are many people with epilepsy who can and are driving. As for planing not to do this or that we are never garunteed anything.

If you think you have it hard today you need to look at some history. If you think it is bad now check with your neuro and other doctors. Back in the 1960's people with epilepsy were still being put away in homes. In the 1970's some states were not letting people with epilepsy get marriage licenses.

Go to a corner and watch people crossing the street going in any direction. You see many people with handicaps. Some with canes or walkers, others wearing glasses, Some with hearing aids. Don't forget those with seeing eye dogs. Now think about all the other people crossing. Can you see the diabetics? Did you notice the people who have heart disease? What about the other people who are crossing who have the same thing you are comlaining about did you see the people with epilepsy crossing? Understand that all of those I listed did not plan to have their issues either. As for breast cancer and their funding you might want to check out how long they have been around. If you had you would have seen that they have been out and nationally for about 25 years. Our National drive has only been around for 4 years. So we do have a lot to do and we are getting there.

Have you talked to the leadership in your town? Have you sent letters ti newspapers in your town letting them know that this month was epilepsy awareness month. If you haven't then why haven't you? It was not planed that I have epilepsy but a blow to the head is what caused mine. Ever get hit in the head?

You did not post the type of seizures you have nor did you post the medications you take. You also did not post how long you have been having seizures.

I know what it is like not to have a drivers license. I also use some common sense. What would happen if you were driving and hada seizure? What would happen if you did not take your medication.

You may think I am being hard but it was not the point I was trying to make. We all know what it is like to deal with epilepsy. I have been living and dealing with it probably twice as long as you have been alive. 

I hope this helps

Joe

Re: epilepsy has ruined my life.

Submitted by RNisme on Thu, 2013-11-21 - 21:15

I had thought the same thing.  I experienced 4 seizures in one night due to a reaction to medications I was given.  I was told that I would never go back to my nursing position by my neurologist.  I was devastated!  I loved my job.  I worked hard to get my brain function back to near baseline and had neuropsych testing done in order to prove to my doctor and my employer that I could do my nursing duties.  I was not able to get my nursing job back as my employer found every reason in the book not to rehire me as a nurse.  Although I cannot prove it, I know they saw me as a liability & now I can't blame them for feeling that way.  I was bitter for the longest time, but realized that it didn't do me any good because the bitterness spilled over into other aspects of my life.  I am happy to say that I have been back to nursing for quite some time and loving every minute of it.  My neurologist calls me her miracle patient. She wanted to help me file for disability, but I told her that I wanted to go back to work and that's what I did.  Sure, I had bills piling up due to not having a job, but I was brought up not to be a quitter.  Months after my seizure episode, I found out that the neurologist didn't think that I was either going to live thru that night or that I would never regain my brain function like I have.

Everyone's situation is different and I see your point. I really feel that there is a light at the end of the tunnel.  It may not seem like it now, but give it some time.  One thing that helped me was getting in touch with my area epilepsy foundation.  They are a great help.  I actually volunteer when I have time.  Get involeved.  I know one of the major projects the foundations are working on is getting the definitions of seizures and epilepsy changed.  There's a stigma that comes with having this condition sad to say.  At least treatments have come a long way as one previous poster mentioned.  Can you imagine being institutionalized!!!

I think we've all been in the same boat.  You just need to choose whether or not you're going to paddle inland or remain where you are.  I wish you luck.

I had thought the same thing.  I experienced 4 seizures in one night due to a reaction to medications I was given.  I was told that I would never go back to my nursing position by my neurologist.  I was devastated!  I loved my job.  I worked hard to get my brain function back to near baseline and had neuropsych testing done in order to prove to my doctor and my employer that I could do my nursing duties.  I was not able to get my nursing job back as my employer found every reason in the book not to rehire me as a nurse.  Although I cannot prove it, I know they saw me as a liability & now I can't blame them for feeling that way.  I was bitter for the longest time, but realized that it didn't do me any good because the bitterness spilled over into other aspects of my life.  I am happy to say that I have been back to nursing for quite some time and loving every minute of it.  My neurologist calls me her miracle patient. She wanted to help me file for disability, but I told her that I wanted to go back to work and that's what I did.  Sure, I had bills piling up due to not having a job, but I was brought up not to be a quitter.  Months after my seizure episode, I found out that the neurologist didn't think that I was either going to live thru that night or that I would never regain my brain function like I have.

Everyone's situation is different and I see your point. I really feel that there is a light at the end of the tunnel.  It may not seem like it now, but give it some time.  One thing that helped me was getting in touch with my area epilepsy foundation.  They are a great help.  I actually volunteer when I have time.  Get involeved.  I know one of the major projects the foundations are working on is getting the definitions of seizures and epilepsy changed.  There's a stigma that comes with having this condition sad to say.  At least treatments have come a long way as one previous poster mentioned.  Can you imagine being institutionalized!!!

I think we've all been in the same boat.  You just need to choose whether or not you're going to paddle inland or remain where you are.  I wish you luck.

Re: epilepsy has ruined my life.

Submitted by 3Hours2Live on Fri, 2013-11-22 - 03:15
Hi Sesat13, Welcome to the dystopia delivered upon people with epilepsy, a dystopia generally prodding members into denial of the stigma. The results of the stigma to epilepsy also gets attention, at the very least, in absurd denial. Discrimination based on this stigma covers every social situation, from the sociology of garbage dumpsters to the sociology involving the federal supreme court. I have my own such experiences with society and epilepsy, and much more generalized accounts can be found in book searches for such as "Goffman epilepsy", for instance: http://books.google.com/books?id=QKkHW8lsgrYC&pg=PA50&dq=goffman+epilepsy&hl=en&sa=X&ei=cf2OUoGeHOLD2AW2poHICw&ved=0CEkQ6AEwAg#v=onepage&q=goffman%20epilepsy&f=false "Epilepsy" by Graham Scambler (1989), chapter 3 "Lay concepts of epilepsy and stigma", page 50: "he is denied the ordinary privileges of social life." The Stigma of Epilepsy has mainly ruined my life in in the legal engagement of gainful activities (both the State & Federal governments have told me so, and all these rulings have been upheld on all ultimate appeals). Epilepsy doesn't prevent the winning of the State Lottery (seeing predestination through epilepsy may help), but any disability payments will prevent the receiving of the winnings without high priced legal interference. Trains on railroad tracks will also run epileptics down, and being on close guard for every narrow moment of time is sometimes nearly not narrow enough (I record everything for the effects & affects of Epilepsy). Tadzio

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