I applied for disability last year. After 6 months I finally got my
first denial. They said that while they acknowledged my disability,
they felt that due to my age and education I could still find work.
We filed an appeal. I have received a few phone calls, one in which
they seem to have assumed I was blind as well. Then nothing. No
letters. No appointments. Nothing. They sent some paperwork to the
college I attend, but they won't send anything. "it's against
policy." We're just waiting. They say I should have an answer this
month, after another 6 months of waiting, but I have my doubts. I'm
near Greenville, SC and we have one of the longest backlogs in the
country. According to the news, it's not all that uncommon for people
to die here before getting a court date. The local attorneys won't
even talk to me before I get the second denial. I think disability
doesn't answer just so they don't have to keep adding up the backlog
of court dates. They can say "our court logs are decreasing" and they
are... because they aren't giving people the chance to get that far.
My husband attends the same college I do. He drives me there.
Unfortunately, we both miss a lot of classes due to seizures. I'm a
creative writing major. At one point, when I still believed there was
hope, I wanted to be a teacher. Things have gotten so bad, that at
times I wonder if I'm dying. If I am, I want this one thing... my
degree, before I go.
As for switching doctors, I can't. I only get to see the one I have
once a month at best because I use a free clinic. We have no
insurance and while Doug works as much as he can, his job doesn't pay
very well. We pay our rent in twice a year lump sums from the
overages from our student loans. On his paycheck we can usually keep
the electric on, his truck insured and eat. We have no phone. We're
also trying to cover internet in the hopes that I can switch to more
online classes. They have more flexibility usually in when you can do
the work. My last EEG and MRI were in October. There were no changes
from the previous test. The only thing different was that I seem to
have developed osteoporosis, which the Doc says is a result of the
anti-seizure meds. It's mild though, and I just take a lot of extra
vitamins to prevent it getting worse.
We have spring break next week, so we're going to go down and apply
for medicaid and possibly food stamps. Doug's job is getting into the
slow season where they cut hours. This time last year he was lucky to
get 10 hours a week. He spent months looking for another job, but
it's tight right now. Most of our friends are on unemployment and
hunting. No luck anywhere. Even Walmart isn't hiring.
--- In epilepsy@yahoogroup
<gaelic_darkwater@
>
> Hi all. I'm new to the group and just wanted to say hi. I'm not
> entirely sure why I joined as I generally have a hard time talking to
> people about my seizures. I can explain what epilepsy is, and how to
> react when I have them. I'm used to that from having to do it at
> school. (I'm back in college after too many years out.) I guess I
> just wanted to feel like I wasn't alone. There's so many things you
> CAN'T say to the people around you. How do I tell my husband how
> sorry I am for how this effects HIS life? See, when he met me, I had
> partial seizures, and occasional tonic seizures. Things are getting
> worse though, and my neurologist doesn't know why. My seizures are
> from a combination of a head injury and a minor birth defect. She
> says I have motor cortex tissue in the wrong place, whatever that's
> supposed to mean. On medication I get only about 3-5 seizures a week.
> I know that's a lot, but for ME, it's not. OF course, when I apply
> for disability they say there's a job out there for me somewhere. I'd
> like to know where since every job I have gotten in the last five
> years has found a reason to get rid of me. In the law firm it was
> when I had a seizure in front of a client. Two days later I was fired
> for being three minutes late. At the gas station it was "leaving the
> till unattended" during a seizure. At the factory, "creating an
> unsafe work environment" by having a seizure that caused me to fall
> into the lane the forklift drivers use.
>
> I don't really know why I'm here. My neurologist tells me it's not
> going to get any better. We've tried dozens of medications. Surgery
> is not an option. I wonder sometimes if she could find an answer if I
> had medical insurance. I'm going to try and apply for medicaid and
> see if they will take me even though I can't have children. I guess I
> just felt alone. The only friend I had who really understood what it
> felt like has had to move away because her husband lost his job and
> the only one he could find was in another state. I just feel like my
> life is falling apart and I don't know what to do.
>
> I can't go out alone. I can't go upstairs to see my friends. My
> doctor says no stairs and the last time I ignored that rule I had a
> seizure at the top and broke my knee on the way down. I can't cook
> except in the microwave or toaster oven because I set a fire once.
> The list of things they say I "can't" do gets longer and longer until
> I start to wonder what's left. I've been getting pretty depressed
> lately. I guess that's rather obvious. I want a life. A real one.
> Not this.
>
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