Sick of Life with Epilepsy

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Sam

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My employer harasses me, my ex-husband and son harass me, since my doctor had me fill out FMLA paperwork that was suppose to protect me, my work talked to him and now he and his staff are harassing me. Just can't seem to get away from it anywhere...No matter where I turn I can find no help medically, mentally or through the law....don't know how much more I can do this.......
 
Hi, Sam
Sorry you are having such a rough time. What exactly are you being harassed about? Might lead to some more specific suggestions or ideas from forum members.

If your seizures are uncontrolled and wreaking havoc right now, contact your neurologist if you haven't done so recently. Sometimes a very simple medication adjustment is all that is needed to bring much improved control.

You don't say how old you are or where you are from in your profile, but if you are in the US and 55+, you may find this helpful. http://epilepsytalk.com/2015/05/16/free-benefits-for-folks-over-55/ Even if you're younger, some of the information contained in the article may be useful. I'm not from the US, so aside from that article I came across the other day, I don't know much about legal issues etc. in the US.

Others will chime in soon. Best of luck to you!
 
Hello Sam,

welcome to CWE
I'm sick to death of my epilepsy was diagnosed 1963.I learned to live with my epilepsy and I have had some really bad times in my life because of my E. I've had surgery been on more drugs and right now I haven't had a seizure since the 2nd of this month and I was having multiple seizures.When I have questions I call my governor's office and find out if there is anyway they can help have you thought of calling your governor's office?
I don't know what state your in?
 
Welcome Sam to CWE? This forum was made out of love by Bernard for his wife Stacy. That love permeates through the whole forum.

Sorry you are having a rough time of it. Keep us updated.
 
I had a grand mal seizure at work 3 years ago, Management did not call 911 and let me sit there on the ground unresponsive as people from all over the building came in staring at me like I was some animal in a zoo. In what way did they think that was going to help anything? Finally a concerned co-worker called 911.
The next year, (I lived alone at the time) and had one at night (have many in my sleep), it took me most of the night to get to my mind back to make the phone call to my supervisor and let her know I had a seizure and that I would not be in to work. I usually do not have my phone in my room, but made the call and fell back into my comatose sleep as you may know after a seizure. With no regard to my health, she called me to inform me I was not going to get paid for the holiday, for it was the day before. (the least of my worries). I answered the phone being right with me and later in the day I have another seizure. "I need my sleep after a seizure". I went to management. HR got involved. They wanted something from my doctor stating what they should do when I have a seizure at work.When I called they told me to get FMLA paperwork to cover myself for absences and tell them to call 911. I went to my doctor's so he could fill out the paperwork and his staff (receptionist, nurse/medical assistant checking me in and my doctor were very cold and callous. He changed my medicine and didn't give me direction on how to decrease one and increase the other and I had been through so much already between his office and work I just tried to wing it. He had me make an appointment in 6 weeks to see him and cancelled that. I stated I was to see him for my yearly apt in 3 months so I would just see him then. HR got the FMLA paperwork and we talked about a lot of things but the only thing that came out of it was for me to sign an agreement on what the company would do if I had a seizure at work. If I had petit mal seizure where I was ok after they would have an ambulance company take me home (and not to come in if I have one at home (which I always to they come on right before I fall asleep or right when I wake up, but more so lately right before I fall asleep), and if I had a grand mal and was unresponsive they would call 911 and I had to use vacation time for any of these instances (which I always did) and if I used it all up it was unpaid. My doctor cancelled and rescheduled 2 times after I was to see him at my yearly and again they all were all so nasty to me that for my next visit I went back to a doctor that I had seen years before but was a 45 minute drive. At work one day the safety director mind you - I was tired and had my head down at lunch one day and he called my supervisor stating I was unresponsive - she came in asked if I was ok and I replied yes, just tired. Later she stated the safety director said I was unresponsive. I went to his office after work and stated I didn't want him worrying about me, that I had signed the agreement stating I would not come to work if I had a seizure. He replied didn't you hear me trying to get your attention slamming the microwave and the drawers and cupboards and I said yes, but I didn't know he was trying to get my attention (those are just lunchroom noises) then he proceeded to ask me what I was going to do if I ran out of vacation time. I stated I don't have that many to even worry about that. My thought is, if he thought I was unresponsive, follow the agreement and why didn't he call 911 and not my supervisor to tell her I was unresponsive.)I have been with this company for 6 yrs, then I was away for 7 yrs when I had my son (and a week after I had him) my grand-mal started up again and had not had one in 16 yrs. and now I have been back for 8 yrs. and I've had one seizure (one too many I agree) but leave me alone I went through all this with HR and the agreement. Now, a couple of months ago I had the stomach flu and called off work 2 days which I left the message to my supervisor (and am now living with my dad and my sister) that I had the stomach flu. When I came back to work, my co-workers were asking how I felt and I stated a little better, and my supervisor and the safety leader are standing next to each other and the safety leader attacks me with the question "Are you aloud to be driving?" in front of the whole department. I did not respond and wrote HR again about this incident stating I am following my part of this agreement which states what the company is to do if I have a seizure AT WORK and I didn't even have a seizure, I had a stomach flu which I left on her voicemail. And now, I live with my dad and sister and they would be the first to know if I had a seizure, which I did not. All 3 of these incidences that they were negligent in. I'm just so fed up as I titled this with epilepsy and all the crap you have to put up with. I just feel these companies don't want you there because "You MIGHT have a Seizure" and hurt their safety records. Believe you me I wish I didn't have epilepsy, I wish I did not have that seizure at work, and do they harass all the diabetics at work eating all the sugar they are not suppose to be eating. Long winded, I know but this is where I'm at.
 
SAM you have had a life without epilepsy.I've never had have Epilepsy all my life and I've been through hell with my seizure, since was 2 years old. I't's been since 1963 I was diagnosed and I have never had more 4 1/2 month seizure free.I have compassion but I don't feel sorry anyone.
I've been through it all.I've had the VEEG and the brain surgery , VNS DRUGS LIKE crazy. Your welcome to have my life.I've never been able to work because of my seizures.I've never driven but I'm married to the greatest guy in the world.
He also has epilepsy had surgery in 1972 and is the love of my life. I'm refractory your welcome to that never knowing when you might seize.Yes 've had tonic-conic seizures and busted my head open plenty of times.
 
Hey Sam --

It sounds like your co-workers need A LOT of guidance when it comes to epilepsy. Yes they are covering their butts legally, but at least some them may be sincerely trying to learn (however awkwardly) how they should respond to someone who has a seizure disorder. I know it took me a while to get a handle on epilepsy for myself, and I imagine it would be even harder for someone who has no personal connection or experience of it.

I'm not excusing the poor treatment you've received at your workplace, just hoping that you can find a way to make it better. Don't let the bozos get you down.

And welcome to CWE by the way! It may seem that you have no support and no one that understands what you are going through, but CWE member are an excellent source of comfort and empathy. I hope you can take advantage. :)
 
Welcome Sam,
Sorry to hear you're going through all this. I hope these people at work lighten up on you.
 
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