starkat
04-22-2006, 10:44 PM
:) Greetings all! Forgive my stoneage messages, if you can believe it, this is the first time I've ever been in a chat room! I'm just looking to find someone else out there, who knows what I'm talking about. I can't drive due to my seizures. I don't qualify for medicaid, so I can't afford meds, I can't control mine, without meds, so I can't work to get the money. ETC. ETC. ETC. I don't live close to public trans. I've been able to work in the past, when I could get medicaid to control my seizures to begin with. I've been told in the past that I don't qualify for disability, because I don't have a tumor or brain damafe that causes mine. I have Grand Mals, and even suffer from long term memory loss. I litterally can't remember any of a two week vacation I took two years ago, just as an example! Does this sound familliar to anyone out there? I have found that I am doing better without the meds believe it or not. It just seems like every time I get a job, I get stressed, and tired and have seizures and miss work, and end up losing my job.
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neurowreck
04-22-2006, 11:27 PM
I got on disability the first time I applied, because of extensive documentation. And I understand the frustration with meds- had to stop 3 extended release meds to go back to generic....if it's ok, or you want to message me, I can tell you of a place that has generics for 20 bucks for 3 months worth if your income is below their level- that saved me. Otherwise, meds would be about 700.00 a month (have other disorders as well). I don't know if it's ok to name them on the boards, but they've been VERY helpful in keeping some level of meds in my system, and my last tegretol level was ok, so the meds are legit!!! The "system" is VERY frustrating. My Medicaid "decuctable" EACH MONTH is 1250 dollars....I barely make more than that, and when I moved to this apt, I was working, and making a lot more, so rent is a huge chunk, not even including utilities- when I hadn't expected to end up on Soc Sec.
Try every drug assistance program you can find- I applied to a bunch. Some, your doc has to fill out, but most are very willing to do so. My doc asks me to fill out as much as I can, and she will do the rest. Some companies will send the meds to you, others to the doc and you either pick them up there, or have them mailed with the transportation situation. I've had to juggle a LOT of meds but at least I'm getting the basic ingredients- just not the extended release form. And, other countries are an option if your doc will write the rx. It's very frutrating- I've been off work for 2 years fighting with this stuff.
Try every drug assistance program you can find- I applied to a bunch. Some, your doc has to fill out, but most are very willing to do so. My doc asks me to fill out as much as I can, and she will do the rest. Some companies will send the meds to you, others to the doc and you either pick them up there, or have them mailed with the transportation situation. I've had to juggle a LOT of meds but at least I'm getting the basic ingredients- just not the extended release form. And, other countries are an option if your doc will write the rx. It's very frutrating- I've been off work for 2 years fighting with this stuff.
starkat
04-22-2006, 11:33 PM
Thanks for the reply! I am just stuck now! I can't even afford DR to get initial prescrips. Isn't it just wonderful, we work, or families work, to pay taxes etc. and when we need a dime or two oh no!
Travis from MN
04-22-2006, 11:45 PM
Epilepsy IS a qualifying disability for Social Security. Big thing that helps is if you have kept a logbook of some sort; usually a monthly calander to keep track of seizures, med changes, etc. Having logs was very beneficial in MY case being I was not brought to the ER often for seizures, or had persons witness my GM's who could give statements at my hearings. I only had 3 ER reports from hospitals documenting eyewitness seizures that I submitted. You can see how keeping a log with medication adjustments even written in with my seizures helped show while I may not have the weekly GM's, the monthly tally of lessers DID qualify me under the standards listed in Social Security Disability code.
I know ILM (wilmington) DOES have a minimal bus system, so use what you can of it. I can't remember the rotation rate (frequency) of routes and if it is "hub based" or a "repeating route" system being I have only visited the city.
In dealing with SocSec, The Original filing (paper) fill out as much as you can for Dr's who know about your seizures and can add anything beneficial; any Emergency Room visit papers, Neurologists, etc. Use the Disability Starting Date as the date your seizures FIRST STARTED and are first documented with medical files (so payments go back that far in backpay). If turned down, after the ENTIRE appeal process, file again using a later date (this is fully legal).
After waiting for their original decision (takes about 90 days), if you get turned down,you need to file an appeal (paper form).
This needs to be submitted within 30 days, and a second worker looks over your material you had for the first round; or any NEW materials can also be added if you have had an MRI, EEG, CT scan, or new tests that can help to prove your case.
For the Third round, if you are turned down on the appeal, GET A LAWYER. The lawyer will take a cut of your backpay from social security. They know more than we do in working the system. This appeal will take place in a courtroom.
If third fails, you still have a forth and final to use before it is considered dead in the water for THE application you originally filled out.
My friend who lives in that area was approved FIRST ROUND no appeal for the mental/psych catagory (usually hard to prove when ability to function is in good working order most of the time).
I don't know how that area treats seizure/epilepsy cases, but you may have good luck getting approved... Nothing lost in doing the paperwork.
In the midwest it took me TWO YEARS of active fighting to win against the system, but I am now in the system. So it can be done.
I know NC does NOT have state/county medical benefits for low income/no income persons, so this is a good idea to try and get on it.
--Travis
I know ILM (wilmington) DOES have a minimal bus system, so use what you can of it. I can't remember the rotation rate (frequency) of routes and if it is "hub based" or a "repeating route" system being I have only visited the city.
In dealing with SocSec, The Original filing (paper) fill out as much as you can for Dr's who know about your seizures and can add anything beneficial; any Emergency Room visit papers, Neurologists, etc. Use the Disability Starting Date as the date your seizures FIRST STARTED and are first documented with medical files (so payments go back that far in backpay). If turned down, after the ENTIRE appeal process, file again using a later date (this is fully legal).
After waiting for their original decision (takes about 90 days), if you get turned down,you need to file an appeal (paper form).
This needs to be submitted within 30 days, and a second worker looks over your material you had for the first round; or any NEW materials can also be added if you have had an MRI, EEG, CT scan, or new tests that can help to prove your case.
For the Third round, if you are turned down on the appeal, GET A LAWYER. The lawyer will take a cut of your backpay from social security. They know more than we do in working the system. This appeal will take place in a courtroom.
If third fails, you still have a forth and final to use before it is considered dead in the water for THE application you originally filled out.
My friend who lives in that area was approved FIRST ROUND no appeal for the mental/psych catagory (usually hard to prove when ability to function is in good working order most of the time).
I don't know how that area treats seizure/epilepsy cases, but you may have good luck getting approved... Nothing lost in doing the paperwork.
In the midwest it took me TWO YEARS of active fighting to win against the system, but I am now in the system. So it can be done.
I know NC does NOT have state/county medical benefits for low income/no income persons, so this is a good idea to try and get on it.
--Travis
aussie308
04-23-2006, 10:25 AM
Yes, you can get SSI with seizures. I did. It took me 3 years of fighting but I got it.
My advise is document everything! I keep a running diary of my seizures, meds., side effects, you name it! Also if anyone else has been witness to your seizures, especially if they're not close friends or relatives, have them write down what they witnessed. I had several casual friends and people I worked with write letters telling what they had observed. Also if your still on friendly terms with any of your former bosses, see if they will write you letters explaining why you lost your job. All the outside documentation you can get helps. Hope this is of some help and good luck! Howdy back I'm a southern girl myself!
My advise is document everything! I keep a running diary of my seizures, meds., side effects, you name it! Also if anyone else has been witness to your seizures, especially if they're not close friends or relatives, have them write down what they witnessed. I had several casual friends and people I worked with write letters telling what they had observed. Also if your still on friendly terms with any of your former bosses, see if they will write you letters explaining why you lost your job. All the outside documentation you can get helps. Hope this is of some help and good luck! Howdy back I'm a southern girl myself!
neurowreck
04-23-2006, 08:43 PM
I couldn't get SSI, but got SSD on the first round. I also had employer long term disabilty insurance, so that overqualified me for SSI, and now, also for a lot of medical aid. It does suck.
There should be some sliding scale based clinic somewhere close enough that a friend or family member can take you for initial prescriptions. Most communities, even small ones have something. Or, call a bunch of docs, explain your situation, and see if they'll set up a payment schedule to cover the first appt.
There should be some sliding scale based clinic somewhere close enough that a friend or family member can take you for initial prescriptions. Most communities, even small ones have something. Or, call a bunch of docs, explain your situation, and see if they'll set up a payment schedule to cover the first appt.
starkat
04-24-2006, 12:58 PM
Thanks to all who replied. I have been thru the application process before, but now I see that I need to try again. I was at one time thinking well, mabye I haven't worked enough in the past, to deserve it. Have you ever felt that way? Kind of like people think you use it as an excuse? I don't know about ya'll but I've never let mine stop me from at least trying to do something. I have two teenagers that I have raised mostly on my own. My friends and family were there for transportation etc. Me and the kids had to learn how to manage my "spells" in the house. They had to learn all the numbers to call, where the snack food was etc. We've done pretty good I think. Thanks again for the replies,
Travis from MN
04-24-2006, 01:25 PM
Supplimental from Social Security will make up for what you did pay into the system so you can have what the government thinks a person can survive on a month. I think thats at 650 or so depending on where you live and if you have put more into the system you may get slightly more out.
You CAN work while on disability, There is a monthly top that allows you to keep both sides (supplimental and disability); but you pay back some of what you would get from the monthly check if you work when on the the system. Just make sure NOT to go over the cap. (THIS part CONFUSSES me, and THEY have not explained it any easier!)
Getting cash jobs (no records) is what a lot of the people do that I know if they need just a bit of extra cash. No paper trails on either end. Seasional work usually will hire on a daily basis if you would be willing to work that.
Hope last weekends storm didn't hit your area too bad.
--Travis
You CAN work while on disability, There is a monthly top that allows you to keep both sides (supplimental and disability); but you pay back some of what you would get from the monthly check if you work when on the the system. Just make sure NOT to go over the cap. (THIS part CONFUSSES me, and THEY have not explained it any easier!)
Getting cash jobs (no records) is what a lot of the people do that I know if they need just a bit of extra cash. No paper trails on either end. Seasional work usually will hire on a daily basis if you would be willing to work that.
Hope last weekends storm didn't hit your area too bad.
--Travis
neurowreck
04-24-2006, 04:43 PM
Just got done with the overpayment stuff....when Social Security Disabiltiy decides you qualified for SSD, they back pay for the months you weren't getting benefits. IF you have additional long term disability insurance, you pay them back the DIFFERENCE between what they pay and what SSD does- after that, LTD pays the difference between SSD and your original private LTD amount so you don't lose that total- which is a huge help. My LTD company broke the payments down to keep me from having to live on just SSD alone (when I moved here, I was working, making good money, and rented a higher end place- it's killing me now, since no utilities are included, as they were in the town I'm moving back to).