Feeling like I am in a sci-fi novel

Quenna

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After months of feeling like a stranger in my own body, after watching my work performance slip, after learning to design my activities with 'easy exits,' after limiting myself to essential driving only, I FINALLY seem to have a diagnosis. We're still waiting for all of the test results, but the neurologist is convinced that I am having focal seizures. This is great and horrible news for me. It is so wonderful to know what is going on, but Jesus, Mary and Joseph! I don't want this! At all.
I'm scared to tell my employer. I'm scared to ask my car insurance company what this means for my policy. I'm scared to ask the DMV what restrictions I am required to follow. I am also taken aback by some of the comments I've read online, suggesting that the thought of even wanting to drive at some point in the future makes me a horrible person.
I don't know how to get to and from work. I'm divorced so no hubby to take me. The city bus route stops a good 4-5 miles from my office. I can get rides in the evenings and on the weekends, but weekdays are a real dilemma. Because I live on the other side of town, I would spend almost as much on taxis as I would renting a room within walking distance of the office.
I have always prided myself on being an independent woman. I don't have any siblings, my parents live overseas, I have no kids, my closest friends live out of state. I have always taken care of my self and really taken pride in being able to do so.
This has really flipped my life upside down. I can't emphasis enough the calming affect this site has on me while I try to get a handle on everything.
THANK YOU THANK YOU THANK YOU!
 

epileric

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I'm scared to tell my employer. I'm scared to ask my car insurance company what this means for my policy. I'm scared to ask the DMV what restrictions I am required to follow. I am also taken aback by some of the comments I've read online, suggesting that the thought of even wanting to drive at some point in the future makes me a horrible person.
Welcome Quenna. I've learned that if there's no need for an employer to know, they don't. They may not be able to fire me legally because of my seizures but there are always "legal" reasons to get rid of anyone they don't like as I've learned.

As far as the DMV goes, I'm sure that if you were in any sort of accident & didn't tell them about your seizures your coverage would be useless. I've never driven & I'm pretty used to walking long ways. Would it be possible to arrange a daily pickup at the bus-stop on the other end so as not to need to walk 4-5 miles? That would be a lot cheaper.
 

Endless

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Wow. Not much I can say to all that, other than we've all been there, and we are right there with you, supporting you. The time right after diagnosis is really hard.

My advice to you on telling people - don't. Don't tell the DMV, don't tell your employer unless you have to for the purposes of accomodations. Just don't tell 'em. As far as your employer goes, people don't mean to discriminate, but they do. If for some reason you need accomodations to be able to do your job, tell your HR department, and they will handle it according to company policy.

About the DMV. Here's a link to the driving laws by state: http://www.epilepsyfoundation.org/living/wellness/transportation/drivinglaws.cfm

Don't drive voluntarily. Don't give up your license to the DMV or tell them, either, unless the law requires you to. Your doctor won't tell the DMV - it looks like Oklahoma is not a doctor-mandatory-reporting state, but it looks like they might require some sort of reporting from you??? I'm not sure. If an emergency comes up and you do drive, don't tell your doctor or he WILL turn you in to the DMV. But don't drive - it's too dangerous until your seizures are under control!

If you can afford it, don't tell your auto insurance, either, and keep the insurance. Unless you end up telling the state DMV, then I have no idea if they will know anyway. Getting your insurance and license back after telling them you have epilepsy is hard. If you can't afford the insurance simply cancel it without telling them why. But find out in your state if it is hard to get auto insurance if you haven't been continuously covered for a certain period of time. It is very hard here in my state.

We've had conversations in here about alternative transportation, like golf carts, adult tricycles, etc. I'm not sure if any of those would work for you.

I understand what you are going through. I walk around 5-6 miles round trip whenever I go anywhere by bus. The bus stop is a ways away, and the bus never stops near where I am going. The bad news is I'm already exhausted from the meds and I just can't do it. Let alone the extra time involved to take the bus. The good news is when I can do it, it's great exercise. I don't have to hit the gym.
 
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douglas

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After months of feeling like a stranger in my own body, after watching my work performance slip, after learning to design my activities with 'easy exits,' after limiting myself to essential driving only, I FINALLY seem to have a diagnosis. We're still waiting for all of the test results, but the neurologist is convinced that I am having focal seizures. This is great and horrible news for me. It is so wonderful to know what is going on, but Jesus, Mary and Joseph! I don't want this! At all.
I'm scared to tell my employer. I'm scared to ask my car insurance company what this means for my policy. I'm scared to ask the DMV what restrictions I am required to follow. I am also taken aback by some of the comments I've read online, suggesting that the thought of even wanting to drive at some point in the future makes me a horrible person.
I don't know how to get to and from work. I'm divorced so no hubby to take me. The city bus route stops a good 4-5 miles from my office. I can get rides in the evenings and on the weekends, but weekdays are a real dilemma. Because I live on the other side of town, I would spend almost as much on taxis as I would renting a room within walking distance of the office.
I have always prided myself on being an independent woman. I don't have any siblings, my parents live overseas, I have no kids, my closest friends live out of state. I have always taken care of my self and really taken pride in being able to do so.
This has really flipped my life upside down. I can't emphasis enough the calming affect this site has on me while I try to get a handle on everything.
THANK YOU THANK YOU THANK YOU!
Hi, first of all. If your diagnosis is what it is, then you have to come to terms with it. We can't control some things in life. Can can try to lead a healthy balanced life as much as we can. But some things will happen and we cant do much about them and have to accept them and come to terms with them and learn to live with them. Having a seizure condition is not the worst thing that can happen to one in the world. There are many other much more life debilitating conditions. Thing's are not as bleak and black as they first seem. When i first found out about my condition, it took me a while to come to terms with it. I remember worrying about all sorts of things. Was it brain cancer? Was it the begining on schizoprenia? Is it just the beginiing on my condition and it's going to turn into a very very serious seizure condition. For the most part, is seems to have stabilized and is controlled by medication. I am lucky as there are some folks out there who have not been able to get it controlled. So first of all, don't panic and worry until you actually get told by the docs and neuro's to panic and worry. :) There are many people who have a seizure condition and lead very normal and fruitful lives and live into old age.

If you feel that the diagnosis might not be accurate or if you don't feel right about the docs and the neuro's you have, then try to see if you can find others in your town or area and switch. It's very imortant to have the right doc whom you feel comfortable with. Not all docs aand neuro's are the same.

Regarding your employer and employment situation. Sometimes it's hard to find, get, keep and have a job when you have this condition. There is a very common widespread stigma associated with it, lots of misinformation. Also, the meds sometimes can have some side effects which may directly affect and influence your moods, behaviour, ability to concentrate, focus sleep e.t.c. Those side effects might creep into your work life and affect your workplace relations. I won't go into details, but different meds affect different people in different ways. Searching the forums you will get some ideas and help. Take it all with a grain of salt. And be positive. But also be very aware and weary that the meds might be affect you in ways than you didnt expect, didnt read about or weren't told. Pay special attention to getting sleep, relaxing, getting quite time, and controlling emotions and "do not!" act on impulse on anything. Especially the first 3 to 6 months when starting a new AED.

Regarding driving. It sounds that it's very important for you to drive in order to keep your job. Having this condition does not mean you can't drive anymore. You are not blind! But you do need to have your condition under control. If you have a seizure behind the wheel, there is no quarantee it will be a mild partial or you will have time to pull over. It might get right into a fully fledged grand mal and you might lose complete control and cause a serious accident -- maybe even cause a fatality, you own or someone elses. I have had grand mals where i went straight from a normal day into a full grand mal and lost complete conciousness within 1 minute. You do no want to be driving if that happens.

An alternative is, go off driving temporarily until you find the right meds which control your seizures. It will be a temporary inconvenience. Up here in Canada you have to be seizure free for a few years and then you can ask your neuro to write a letter to the ministry of transportation to re-instate you drivers license. I just got mine back. I voluntarily went off driving because i wanted to try a life style change instead of meds to see if i can get rid of my seizures by remoiving alcohol from my lifestyle and getting normal sleep. It didn't work out. So I asked to be put on keppra instead of dilantin. I haven't had a grand mal while on keppra for over 2 years. The neuro just gave me back my license. I still wont be driving long distances, on the highway and i also refuse to drive my kids on my own. i just drive around the area and help out with gorceries and house stuff so the wife doesnt have to do everything.

best of luck.
 
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huskymom

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Welcome Quenna!

Sounds like you have had a rough road for awhile, but hang in there. You may never get your seizures under total control, but life will still be great! I find that as long as I feel well and have been good about taking care of myself, then driving is not a problem. Granted, it only takes me 10 minutes to get here!!

You will still be the independent woman that you have always been. I am glad that you have found this site. :hello:
 
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