Seeking support, advice, someone else with seizures

[Talevita]

I have refractory epilepsy. I left college because it, I’m not independent because of it, I can’t hold a job because of it, but I have a family who loves me. I don’t know how many people here know that epilepsy is a seizure disorder. Grand mal (tonic clonic) seizures involve falling unconscious and convulsing; and partial seizures are less intense, “space out”, lose awareness seizures. I was diagnosed with epilepsy twelve years ago at 14 years old. Grand mal seizures are controlled if I take my pills, I have 8-12 complex partial seizures every week. I left a bachelor’s degree three semesters early to have a last resort brain surgery that didn’t work. Last resort surgery after eleven different prescription medications. I’m on number thirteen now, lucky number fourteen let me see how bad an allergic reaction was. I am one of those lucky few who have epilepsy for no known cause, and one of those 20% whose seizures cannot be controlled with three drugs. My story: www.understandepilepsy.blogspot.com.

I can’t be independent because I can’t get a driver’s license. I can’t hold a job because seizures affect the way I work. Oh I know that after being fired from five jobs in the past three years. Especially since my last employer told me so and encouraged me to run to the government for help. But I’m too stubborn to let my paycheck be delivered to me without working for it. I’m trying to make money from home, but I’m too stubborn to stay trapped inside all day long so I’m applying for many jobs and even being called in for some interviews. My last interview ended with the question: Tell me why you think you’ll be able to do this work when you have the seizures your former employer told me about? How would you answer that question?

I’m a very, very frustrated person right now. When is it time to give up? There’s a question that comes into my mind every now and then. And I haven’t found an answer yet. Twelve years, five doctors, all the safe-for-me pills on the chart, brain surgery, and I still have up to twelve seizures each week? It’s too much to educate myself and hold a job. The public transportation around here controls where I go and when if I want to leave my home in the day when my husband is working so hard for both of us.

BUT, I have a family who loves me. My parents and grandparents have been supportive ever since my diagnosis. They were all there for me when I was still learning what seizures were, when I left behind my bachelor’s degree, and every day in between. My mother and father both flew to Minnesota with me and held my hands as I was wheeled into the operation room where that part of my brain would be excised, and they were both there when I woke up. They were at my side on the very difficult day I realized that brain surgery didn’t work. My husband is here for me. If he is able to he will take me to this place, from that place. I do have friends that spend time with me. My husband is right there when I meet my neurologist and supports me when I accept and do everything she advises. Please don’t think I don’t know how lucky I am. This is just a very, very hard thing to go through, and I would like to see if anybody here has something to say. I’m sorry for the length.

My story: www.understandepilepsy.blogspot.com.

 

[purplesunshine]

As an employer I’m really saddened that you’ve been fired from your jobs…unless you were working on heavy machinery.

If you were capable of working after a seizure and no big rucucus was caused. Firing you for seizures was VERY illegal.

Work you could look into would be court stenographer or medical transcription. In both cases you can opt to receive tapes at home. I have a friend who does this…its estimated a tape can be 10-15 hrs and the pay is around $300. You usually have a deadline but the actual rate of transcription is at your own pace. You can do this at the library with a laptop…etc…

Public transit sucks, and relying on people for rides sucks more. If for no other reason to go on medical disability look into applying for the handicapped busing system. They wind up being more like a taxi and can offer FAR more independence. It isn’t accepting charity or getting paid for something you didn’t work for, its there so that someone with a disability, young or old, can contribute to society.

If you are really looking for a job even with having almost a bachelors go for basic retail. Find a good and understanding employer, develop methods of dealing with your seizures in the workplace and then move on. Unfortunately, you may have to start at minimum wage.

And if all that fails, I’d look into becoming an advocate for those with disabilities. If you have the mind for it learn the law, learn the transit and learn the ins and outs of the system. You seem to be a very driven woman who won’t give up.

At the same time, if your support network falls through (eg your parents or husband die) make sure you have in place the assistance you’ll need to live.

 

[iluvmybabies]

Good day, I am really sorry for what you are going through, may GOD bless, comfort, give you strength and take care of you during these trying times…

I can only imagine the frustration and pain that you are going through… God bless you and your loved ones for their love, hard work, persistance, support and care…

Getting assistance from the government doesn’t mean you haven’t earned it, on the contrary it just helps aliviate a small financial burden from you so you can be less stressed about making ends meet, and help you find the time and the transportation to get you to and fro helping you find a job…even if it’s something like greeting in Walmart, or in the warehouse doing inventory… Won’t pay much but it should help you achieve a form of independence while you still try to continue your doctor’s visits and getting cared for.

I have heard great things about staying at home mom’s that actually work, from home, I would like to try that some day but unable to at the moment… I tried selling on Ebay and stuff just got into more debt…Still owe them 300 bucks…Never made enough to pay for their seller fees…So hopefully some other, better opportunity will open up some day, soon!

So don’t give up, please don’t…I don’t have the problems you are having health wise, at all, and I feel like giving up on my life and my problems many times, but I pray and always seek comfort with our brothers and sisters here in the forum and their prayers help lift my soul and pray even harder to GOD, and I feel much better…Trying to take things one day at a time and learning to trust in GOD even more…It’s not easy, believe me, but let me tell you that I am trying and I don’t want to give up! It’s a hard struggle, and here let me share what I read this morning:

REV 2:10 Do not be afraid of what you are about to suffer. I tell you, the
devil will put some of you in prison to test you, and you will suffer
persecution for ten days. Be faithful, even to the point of death, and I
will give you the crown of life.

I have got on and just started reading this and felt so much better…Hopefully it comforts you a little as well…

God bless…Hang in there and please don’t lose hope…

 

[Cajun_Girl]

Hello!

I don’t want to go into my past work too much, but I will say that I’m familiar with disability cases. You are far more driven than many people who have a milder form of your condition. In fact, I recall knowing of a fellow who had one seizure and did not leave his house for the next ten years.

If you’re having eight petite mal seizures a week, applying for disability is not unreasonable. (If you haven’t worked much in the past, and your husband is working, you may not qualify due to financial reasons, but it wouldn’t hurt to look into it.)

However, a few questions came to mind when I read your post, although you certainly don’t have to answer them here. Is your husband able to support you? Are you having financial problems, or do you want a job simply to feel as though you’re contributing? I certainly know the feeling, and it was absolutely essential for me to prove to myself that I could work before I could happily settle into the role of stay-at-home mom. But don’t forget that you don’t need a job to have any worth. You have many loved ones, so you are surely doing something right.

If your motivation isn’t financial, are you able to do volunteer work? Is there something other than earning a paycheck that would make you happy? You said that you quit school due to your brain surgery. Is it possible to go back and finish after you take a break? A degree may open the door to an office job, like the one I used to do. (Our office was very accomodating, and in fact we had one employee in a motorized wheelchair.) Those are just some thoughts. . .At any rate, I definitely applaud your desire to go out and do something! (I’m used to working with people who were sometimes very unwilling to do anything for themselves.) I’ll be praying that you find what you are looking for.

 

[kage_ar]

My last interview ended with the question: Tell me why you think you’ll be able to do this work when you have the seizures your former employer told me about? How would you answer that question?

.

You answer “that question is a violation of the Americans with Disablilites Act. You will be hearing from my attorney.”

This former employer needs to hear from your attorney as well.

ada.gov/qandaeng.htm

 

[Talevita]

Thank you all for your responses. My husband is pre-diabetic on a strict diet. We take good care of each other. Financially speaking, he holds a job that supports us both. Even with the condominium we own, healthcare costs and that student loan of mine that I’ll be paying until I die (private Catholic out of state colleges are expensive even with scholarships). We also both have very supportive parents who remind us that they are there for us if we need help with anything, be it finances or singing donkeys in our kitchen. My husband works very hard at a plant farm. In the busy Summer season, he works outside six days each week. He would work this hard even if I had a job. I don’t feel especially good knowing I don’t have any way to get out of here while Jon is outside in that sun, wind, or rain lifting six to eleven foot trees from 8am to 6:00.

I’m aching to go back to school and get that degree, but these seizures have just not improved since I left college so I know that it would not work and quitting was too hard to do again. I left college as a pr/journalism major and obtained a medical coding credential a year after I had surgery for a four month project and something to throw on my resume. I want to make money so I can contribute to our bank account and so I stay busy. Since they won’t let me inside an office to do that I’m trying to make money from home by decorating and selling egg shells, and my grandmother is teaching me about being paid to write. Both are fun things to do but I don’t want to be stuck in my home like this. I love my cats dearly but I miss seeing the people I used to work with. Thank you, again, for your responses.

ps: Humor is important. At least I know how to laugh.

 

[jazzbaby1]

“Idiomatic” is the term for epilepsy with no known cause. I know this because when I was a child I had “idiomatic” epilepsy. I have been seizure free for over twenty years now, but I know where you’re coming from. It sucks big steaming piles of donkey fritters. I’m sorry that this happened to you. If you have a hankering to write the wonderful people at Epilogues (they’re online) are very gentle. I’ll be praying for you.

 

[w2bp88]

Is there any way you can finish your degree with online classes? At my school there are several classes that can be taken online, maybe you can look into that? I also heard about many online schools so it could be possible for you to transfer your credits over and just finish up at that online school.

As for income, I recently bought an e-bay for dummies book because I’m hoping to make money from home. Maybe you could do something like that?

 

[Sr_Sally]

I have a very good friend who has a seizure disorder from an injury. She is also married and is a mother. She takes handfuls of pills everyday and also can’t drive. As a mother, she has plenty of work inside her home, but she also sells Mary Kay. She holds the parties at her house or the hostess will pick her up. I am no-end impressed but what she can do and her wonderful attitude about her life.