Anyone with a job or disability?
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Chel
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I'm currently working full time, but am struggling. My job involves driving (not only to and from work, but as part of my work), and a lot of "brain work". My cognitive function seems to be declining.
My employer has been supportive, and I can work from home sometimes, but I do need to attend my workplace, too. Disability seems to be on the horizon.
My employer has been supportive, and I can work from home sometimes, but I do need to attend my workplace, too. Disability seems to be on the horizon.
I am struggling so much at work. If I did not own my business, and was my boss, I would have fired me by now. I am so frustrated in myself. I am at the point of closing my business. I called to find out about disability, and was told that I need to show no income for 4 months. How am I suppose to live for 4 months with no income? How come I have paid into this all of my life, and it's so hard to get help. Why can a person go to social services and get a $1500.00 emergency grant in 2 days? My sister did. Why do I see a man on the side of the store were my office is pouring cooking vermouth into a 2 litre bottle of rootbeer, and telling me it doesn't taste too good, but it's high alcohol content, and you can buy it with food stamps? Why are there people outside the grocery store trying to sell their food stamp card for 50 cents on the dollar with their little kids present? I wonder what that kid is going to get for dinner? And yet you and I would get denied the first time without an attorney, and cannot have an income for 4 months on money that a lot of us have paid into for years. I am so very IRRITATED.
RobinN
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My daughter works and goes to school. Rides the metro, bus to get around. Goes to clubs, and enjoys life. She has a history of tonic clonic seizures, though they appear to be controlled at this time. She does have issues monthly, but her boss is aware of her hypoglycemic side effects and makes accommodations.
Although it wasn't paid work, I started doing a voluntary conservation job one day a week. But even that was too much at the time because the neurologists refused to give me any medicastions at all (I was on nothing), and at the time I had a big increase in my partial seizures, and was lucky to get a couple of hours sleep a night. Plus I had headaches as well as a bad pain in an area I had a lump I was born with removed - sometimes it was raised and looked as if the lump was coming back!
So I gave up the conservation job even though I really wanted to continue doing it.
There was somebody that noticed I was struggling one day and asked me if I wanted a break. I said no, but was glad when we we finished.
Then I found out about Topamax and asjked my GP if I could try it for my headaches (really wanted it for the partial seizures but nobody was willing to treat them), he said I could but advised me against it. So I tried it, didn't really expect it to workon the headaches as nothing else ever had but it did, and it also helps with the partial seizures, not completely cos I can only go on the headache/migraine dose due to the neurologists not willing to treat me (seeing one that apparently knows about partial seizures next month).
So now I am able to cycle again and do some of the long journeys I used to be able to do. I also do some voluntary jobs, one working at a garden centre, one working at a historic building, each is once a week. And also a conservation job which is less regular. Ok, they are not much but considering I struggled with one half day before, it's progress.
Yet the last neurologist spoke about coming off the Topamax, and gave me a number for neurosupport - they help people with neurological conditions get into work. If I come off it, there won't be much I can do. And therefore there will have been no point in giving me that info. So I am going to write down the progress I've made with everything since being on it and explain the difficulties I had when I wasn't and hope that they don't take me off it.
I know the jobs are only voluntary but there is actually the possibility of paid work eventually at one of them and they don't discriminate.
So I gave up the conservation job even though I really wanted to continue doing it.
There was somebody that noticed I was struggling one day and asked me if I wanted a break. I said no, but was glad when we we finished.
Then I found out about Topamax and asjked my GP if I could try it for my headaches (really wanted it for the partial seizures but nobody was willing to treat them), he said I could but advised me against it. So I tried it, didn't really expect it to workon the headaches as nothing else ever had but it did, and it also helps with the partial seizures, not completely cos I can only go on the headache/migraine dose due to the neurologists not willing to treat me (seeing one that apparently knows about partial seizures next month).
So now I am able to cycle again and do some of the long journeys I used to be able to do. I also do some voluntary jobs, one working at a garden centre, one working at a historic building, each is once a week. And also a conservation job which is less regular. Ok, they are not much but considering I struggled with one half day before, it's progress.
Yet the last neurologist spoke about coming off the Topamax, and gave me a number for neurosupport - they help people with neurological conditions get into work. If I come off it, there won't be much I can do. And therefore there will have been no point in giving me that info. So I am going to write down the progress I've made with everything since being on it and explain the difficulties I had when I wasn't and hope that they don't take me off it.
I know the jobs are only voluntary but there is actually the possibility of paid work eventually at one of them and they don't discriminate.
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Im quite lucky at the moment work wise,im in forestry and my boss knows about my condition and is fine about it he doesnt hold anything against anyone.As long as you do your work he is happy.A quick note about disability,years back i tried to claim disability but was refused,the reason being according to the pen pushers my epilepsy didnt effect my everyday life,apparantley.
Yes, I work full-time...I developed the seizures (tonic clonics) out of nowhere in 2010 and lost my job but found another one a few months later and so far have been pretty well controlled by medication. (Yes, I went after the employer who let me go, they 'fessed up)
I'm the sole breadwinner in my family and work in management so I'm hoping that the seizures stay under control.
I'm the sole breadwinner in my family and work in management so I'm hoping that the seizures stay under control.
employment
am in my fifties now, and have not paid into the system long enough to qualify, and not sure if I would anyway. My husband has a disability pension, but he also works now because I no longer have a job. We still can not make ends meet, and I fear he will loose his job because of the time he takes off due to injuries. Entertaining the thought of getting hired right now, and not performing on the job due to my brain is scary. I kinda fall through the cracks. Between health insurance premiums and out of pocket, the meeter keeps ticking, cha ching! Not sure how to fix this at my age, and I feel guilty that my husband is struggling to go to a job. Bleh.
am in my fifties now, and have not paid into the system long enough to qualify, and not sure if I would anyway. My husband has a disability pension, but he also works now because I no longer have a job. We still can not make ends meet, and I fear he will loose his job because of the time he takes off due to injuries. Entertaining the thought of getting hired right now, and not performing on the job due to my brain is scary. I kinda fall through the cracks. Between health insurance premiums and out of pocket, the meeter keeps ticking, cha ching! Not sure how to fix this at my age, and I feel guilty that my husband is struggling to go to a job. Bleh.
lovemyladybug
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neither for me now , quit working , couldnt get disability , but im lucky in the sense that my husband has found a great job that he loves , we can live off just his income & the insurance cant be beat
elizzza811
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I'm actually on SS disability for OCD/anxiety/depression, though other things were going on with me at the time. I didn't know what and was still searching for answers (probably these seizures and Lyme). I was lucky to get it though. What helped, I think, was...well, two things...
1) I had a lonnng history of OCD/anxiety/depression, documented by seeing lots of doctors for it to no avail. Nothing ever helped.
2) My employer at the time wrote me up twice...once for answering the phone (and I was a receptionist), and that same week for not answering the phone (when the vet, somebody I thought I should listen to, walked out as the phone was ringing and yelled, "Elizzza, don't answer the phone!" While I turned to look at her with a 'huh?' look on my face, another girl at the front answered the phone, and I got written up 2 minutes later). I knew they had intentions of firing me by the second write-up (probably because I was the 'voice' and 'pen' for everyone else there that was unhappy with this new company that was screwing us all). But I went in the day after this second write-up, first thing - before they had a chance to write me up a 3rd and final time - told them I was taking short-term disability leave (so I'd at least get 60% of my pay for like 3 months and maintain my health insurance), and immediately filed for SS disability.
It all worked out though...I shouldn't even have been working with how severe my OCD/anxiety/depression was (and still is). And by the time my short term ran out, my SS kicked in (retroactive to the date I applied). Plus, there were some people (in high places) with this company who truly respected me and knew I was in the right (and told me so), and they really looked out for me. Let's just say they allowed me to get short-term disability much longer than I was supposed to, months longer, and I never had to pay them back. When the head guy (months later) tried to accuse me of robbing them (for cashing these ongoing checks), I pointed out that I'd called the girl I was supposed to call multiple times, told her it was time to stop the checks, asked her if I should send them back, and she had said 'no' multiple times...to just cash them...she'd take care of it. Obviously I didn't spend these checks (in case they would've asked for them back), but it was nice screwing them back after what they'd done to me...and I wasn't even trying to! Bet they didn't think I was smart enough to file for short-term (on the basis of psych reasons) before they had the chance to fire me. I'd applied for SSI once years before this though...didn't get it. SS I didn't even qualify for (yet) back then.
1) I had a lonnng history of OCD/anxiety/depression, documented by seeing lots of doctors for it to no avail. Nothing ever helped.
2) My employer at the time wrote me up twice...once for answering the phone (and I was a receptionist), and that same week for not answering the phone (when the vet, somebody I thought I should listen to, walked out as the phone was ringing and yelled, "Elizzza, don't answer the phone!" While I turned to look at her with a 'huh?' look on my face, another girl at the front answered the phone, and I got written up 2 minutes later). I knew they had intentions of firing me by the second write-up (probably because I was the 'voice' and 'pen' for everyone else there that was unhappy with this new company that was screwing us all). But I went in the day after this second write-up, first thing - before they had a chance to write me up a 3rd and final time - told them I was taking short-term disability leave (so I'd at least get 60% of my pay for like 3 months and maintain my health insurance), and immediately filed for SS disability.
It all worked out though...I shouldn't even have been working with how severe my OCD/anxiety/depression was (and still is). And by the time my short term ran out, my SS kicked in (retroactive to the date I applied). Plus, there were some people (in high places) with this company who truly respected me and knew I was in the right (and told me so), and they really looked out for me. Let's just say they allowed me to get short-term disability much longer than I was supposed to, months longer, and I never had to pay them back. When the head guy (months later) tried to accuse me of robbing them (for cashing these ongoing checks), I pointed out that I'd called the girl I was supposed to call multiple times, told her it was time to stop the checks, asked her if I should send them back, and she had said 'no' multiple times...to just cash them...she'd take care of it. Obviously I didn't spend these checks (in case they would've asked for them back), but it was nice screwing them back after what they'd done to me...and I wasn't even trying to! Bet they didn't think I was smart enough to file for short-term (on the basis of psych reasons) before they had the chance to fire me. I'd applied for SSI once years before this though...didn't get it. SS I didn't even qualify for (yet) back then.
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Yeah im assuming the forms are probaly the same,if not i wouldnt imagine there would be to much diffirence,but its like trying to get blood from a stone.Thanks for the website information,that will come in handy,one other thing Lou does the phrase "theres a certain way you have to answer the questions"actually mean you have to lie!!!
onder:CrunchyFrog
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I'm currently working full time as a teacher. My seizures only happen in my sleep and have been pretty much controlled so fortunately my lifestyle hasn't been drastically affected. But, I do get tired very easily and I have to keep my classroom organized and have a clear routine in place for myself more than the kids.
I just remember back in the day, before Epilepsy I put myself through uni working at a supermarket I'd work 30+ hours a week, plus study and go to class and I was out socializing every weekend. I definitely couldn't keep up with that lifestyle now and I can't blame old age...
I just remember back in the day, before Epilepsy I put myself through uni working at a supermarket I'd work 30+ hours a week, plus study and go to class and I was out socializing every weekend. I definitely couldn't keep up with that lifestyle now and I can't blame old age...
I was working until march of this year. I had been on and off temporary disability since my first tonic clonic in '09 and it didn't help that management changed while I was out on leave so when I returned they did everything they could to push me out. I wasn't able to function anymore, with uncontrollable seizures, NES, anxiety, major depression, and fibromyalgia I realized I shouldn't be working anyway. I was admitted for my second video EEG when I filed for permanent disability. I don't have any income because my epileptologist has my tonic clonic seizures has me stabilized finally...but I still struggle with everything else. I can't get paid for temporary disability until I find a neuropsych and they have to do an assessment and sign the forms so I can get temporary disability while I wait for permanent disability. I'm told it can take 2 years. It's the worst possible thing to wait since like so many of you, I'm struggling financially just on my hubby income and with 3 kids its hard because I have always worked, and now cognitive issues prevents me from working, not to mention everything else. Luckily for me my husband does have insurance, but I've been fighting with them to get me a trained doc with knowledge of epilepsy and NES. I've seen too many phd's who don't know a thing about my brain. Lol
Loopy Lou
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Yeah im assuming the forms are probaly the same,if not i wouldnt imagine there would be to much diffirence,but its like trying to get blood from a stone.Thanks for the website information,that will come in handy,one other thing Lou does the phrase "theres a certain way you have to answer the questions"actually mean you have to lie!!!
Nope. I didn't lie at all on my forms, and they also know that i'm working 20 hours a week.
Its just that the way the questions are laid out, you need to answer them in a specific way to explain why you would need DLA. Hold on, i'll see if i can find the link and then you can see what i mean.
Well i can't find the specific one i was looking for, but this might help you a bit http://www.epilepsy.org.uk/info/entitlements/scotland
Edit - oh yeah, EVERYONE gets turned down for DLA on the first attempt. I've never known someone to get it the first time they've applied, no matter what it's for. I got refused the first time, so i called them and explained why their points were wrong (they itemise why you're not getting it) and then i started receiving it a week or two later, backdated to when i first applied. It's supposed to take 16 weeks to sort.
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