Inability to live a normal life — lost, scared

Posted by davidinvegas @davidinvegas, Dec 20, 2018

I have always had a hard time living what I would deam a normal life. I probably don't need to break it all down. My epilepsy has never been fully under control. 32 years or so. The number of seizes isn't the problem, although 1 is to many. About 2 a month, very severe. A lot of injurys over the years. Mostly head injuries. Getting to be a real problem on my mental outlooks. I have had a lot of changes in my life over the past 6yrs. Rainging from divorce too mom passing away, selling her house. Me moving and not being able depend on anyone. Taking care of business is feeling farther and farther away. Afraid, embarrassed and just plain lost. Getting work is proving to be tough mentaly and physically. Leaving it at lost, scared, can't see any kind of light in my personal tunnel.

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@lisalucier

Hi, @becsbuddy and @huygirl1 - if either of you would like to read about the gallbladder surgery experiences of others and perhaps share some input of your own, you might check out this thread on gallbladder surgery https://connect.mayoclinic.org/discussion/gallbladder-surgery

@davidinvegas - thinking of you. How are things going this week?

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On bus. Was going to welfare before cardiologist but need to go to cardioligist, not enough time. See if Dr. Can get pacemaker working. Still looking for job. I'm limited in type of work, taking longer than wanted. One day at time.

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@davidinvegas
Inch by inch, anything’s a cinch David.
Wishing you luck at the Cardiologist’s and in the job hunting. Hope your Seizures have improved or at least aren’t any worse.
Best of luck buddy, hang in there,
Jake

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@davidinvegas

On bus. Was going to welfare before cardiologist but need to go to cardioligist, not enough time. See if Dr. Can get pacemaker working. Still looking for job. I'm limited in type of work, taking longer than wanted. One day at time.

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Hi davidinvegas! Don’t give up! Don’t EVER give up! You can do this..........Karen

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@karen00

Hi davidinvegas! Don’t give up! Don’t EVER give up! You can do this..........Karen

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No giving up for me. I have my life to live and still lots to learn. 4 great kids I need to love and mentor. Going to see neurosurgeon about vns surgery. Tired of lawyers and waiting. Need to make big decision. Work to live or have confidence in ss. Is disability tough with E? Seems to be.

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@davidinvegas
Hi David,
When you see the Neurosurgeon ask if the VNS is ineffective, can/will he remove the coils from the Vagus nerve. Back in the day they just shut if off and often still do. Some people however have problems and need the unit removed (the coils.) Make sure s/he is experienced in both putting it in as well as removing it. Make it clear your talking about the coils.
Not sure what you mean by “Is disability tough with E?” Do you mean getting on disability or getting enough money or something else?
Best of luck,
Jake

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Good morning. Just headed to theripest. Waiting to here from lawyer. I need to make a very big decision weather to keep perusing disability or just start to work and take care of my self and deal with problems from there. I'm trying to make educated decision. Let employer know about health issues or just wait till problem arrise. Hard decisions. Never good at making large decisions, but this is all on me. Get out and try normal?

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@davidinvegas

Good morning. Just headed to theripest. Waiting to here from lawyer. I need to make a very big decision weather to keep perusing disability or just start to work and take care of my self and deal with problems from there. I'm trying to make educated decision. Let employer know about health issues or just wait till problem arrise. Hard decisions. Never good at making large decisions, but this is all on me. Get out and try normal?

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@davidinvegas
Hello David,
Remember the excellent advice Gail offered. She’s a wise lady. Don’t forget your rights through the Americans with Disabilities Act. Although advice is so easy to give but often very difficult to implement. Gail has the knowledge and the experience and is an awesome resource for you to reach out to. I’m sure she would be happy to help you, through private messaging if you like. I like being open and honest too but as I understand it it your not being dishonest by withholding health information. I’d probably say “I have Epilepsy” to the interviewer even though I know better. I’ve done it to interviewers and to the police after falling asleep and hitting a truck. Ended up losing my license for a year. Both my doctors wrote convincing letters supporting me but still lost my license because a policeman made a medical judgment he wasn’t qualified to make. I later asked him if he had ever seen anyone have a seizure or anyone that was Post-ictal, he hadn’t. Sorry about babbling on.
Have you checked on how much you’d receive on disability?
Good luck on whatever you decide,
Jake

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@davidinvegas

Good morning. Just headed to theripest. Waiting to here from lawyer. I need to make a very big decision weather to keep perusing disability or just start to work and take care of my self and deal with problems from there. I'm trying to make educated decision. Let employer know about health issues or just wait till problem arrise. Hard decisions. Never good at making large decisions, but this is all on me. Get out and try normal?

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@davidinvegas I hope your appointment went well. As far as how much information to give to a potential employer, I think several factors to take in to account. What do you experience when you have a seizure? What duties would your job entail, would having a seizure compromise physical safety to you or a coworker? Perhaps a job duty that would negate that. Do you take medications that ward off or minimize the effects of a seizure? Most employers will ask if there are any accommodations that they need to make for you. Hope this helps, and good luck! We are here for you!
Ginger

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Thank you for the info. Stuff I hadn't thought of. Still waiting for call backs but I need to keep all that in mind. Only problem is when I have one it's bad, won't stop till I'm sedated. Been longer to recover too. Thank you.

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@davidinvegas

Thank you for the info. Stuff I hadn't thought of. Still waiting for call backs but I need to keep all that in mind. Only problem is when I have one it's bad, won't stop till I'm sedated. Been longer to recover too. Thank you.

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@davidinvegas
Do you have a rescue med?
Who gives it to you? Do you have a roommate?
How long do your seizures last? How long are you in a post ictal state? Just curious, I know a couple people who had Post-Ictal bless, where you are extremely happy after the Ictal phase. Did that ever happen to you? I never did, I was always to miserable after.
I must have liked 20 questions as a kid, lol.
Later buddy,
Jake

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