Disability?

[Kristina112380]

Hi everyone,
I hope everyone is well. I am ok, better day today than yesterday.
I have a question or two. I am wondering what I should or could do;
*I am wondering if I qualify or should bother with disability.
* I cannot afford the Trileptal and am still on Phenytoin, but it is giving me nasty effects! I am on share of cost medicaid, and that does not cover it. My doc wont return my calls all week!
*How long do you "stay out" after a tonic clonic seizure? I was out for a few hours. Normal? I dont know why it is bothering me about that. lol
Thank you all and I appreciate your time and SO much help already!

[hawke86]

What do you mean?

[tinasmom]

Kristina -

I think you should apply for disability, it's worth a try. Here in WI, it is very hard to get disability. My husband is a below knee amputee and had 3 failed job attempts. He filed for disabilty many times over 7 years. Finally they decided that he qualifed because he had the job failures because of the constant pain in his leg and the fact that he has had 6 surgeries in 7 years.

Have you contacted your local Epilepsy Foundation affiliate for resources to help pay for your meds? Pharmaceutical companies to have grants that you can apply for to help pay for meds. You can also contact the National Epilepsy Foundation and ask how you can get help with the cost of your meds. I am sure they will have resources for you also. I hope you can find someone to help you with this.

[Molly97]

Kristina,
I am on disability; have been since '97. It was the hardest thing for me to do. I had to admit that there was, and still is, something wrong with me that was serious enough that it impacts every facet of my life. From the beginning, I had to give up my driver's license. There is no bus service in my area. I could not get to a job if I wanted to, unless by taxi. I think all that was a major factor in my getting disability. I agree with Tina's Mom; getting it is not easy here either. Keeping it is harder still. But the seizures continue, and the situation stays the same.
If you do go on disability, you must come to grips with the reality of the seizures. I speak only for myself when I say that my self-esteem took a major nosedive when I went on disability. But I am thankful that I could get it.

[tinasmom]

Molly -
Never, ever think that you are less of a person than anyone else because you have E. Disability is there for people that need it and it is not easy to realize that you cannot support yourself by working. Just remember that You Have Epilepsy, But Epilepsy Doesn't Have You!!!!!!

[hawke86]

I know what Molly is going through. It's not easy being on disability. Sometimes I don't want to face the world cause I have epilepsy and other health problems.

[homemom360]

the first thing i would tell you is that if you want to apply for disability call social security first and request a work statement. it has your work history and will tell you if you meet the requirement they have to even apply for disability let alone be approved for it.
you know what really sucks is that i am getting the shaft from both ends. i have been let go (fired) from two jobs in three yrs due to my E and the problems i have that come with it. i have tried numerous times in the ten+ yrs i have had E to get disability but been denied over and over. now i have the "medical proof" that the government is always asking for but now get this, i no longer have enough work "credits" to even qualify to apply for disability, you need 20 credits over 10 yrs and i only have 17 and from this yr on that number will just go down because you have to make 1050$$ just to get 1 credit. the last two yrs i worked i make under 1000$ so i got zero credits. this sucks. i can't get and hold a job to bring in $$ to help my family, and the government says now that they won't even take my application till i have the right amount of credits. then to top it off between now and retirement i have to make sure that i can make 23 more "credits" just to make sure i get my retirement benefits. again this sucks.
to try to answer your last question about t/c i stay out differnt amounts of time. if i am awake when they happen i am out or at least "out of it" for about 20 mins my husband says. if it happens in my sleep it is more like an hr or more before i come out of it. and the way i feel when i do fluctuates from supper hyper to sore and tired. hope the little info i have helps in some way.

[Kristina112380]

Hawke,
What do I mean about what? (which part?)

[Kristina112380]

tinasmom,
Hi, Nice to meet you. I am trying to get the doctor to cal me back, in hopes that maybe he can call in something else, more affordable, or maybe he can give me samples or something.
I dont want disability, BUT, I cant even think straight! ya know? The meds are making me feel weird pretty much 24/7. I have three kids (8,5,and 4) to care for, and I LOVE them! I dont want to be less of a mom because of the meds I am on. I think my head feelings are from the meds. I hope that is all. I am sorry about your situation.
Also, the local E foundation is here, but they do NOT pay for meds! I dont know why. Anyway, I am learning how hard it is to get any help for anything! I feel like an idiot, because I am always the one to help everybody. To go get them help if it isnt there, or they cant. Now, I cant seem to remember to wash the dishes! lol I feel like my life has done a 180. I even was a full time volunteer in my kids' school, and I was going to school for a Criminal Justice degree, and going for Real Estate!I am also a wife,trying to help my husband, a daughter to a mom with heart problems, and a dad with severe health problems ,a sister to a recent divorcee, (rough), and my best friend, like a sister, is about to get a divorce, and she is always calling crying. I also help the hispanics in my area to fill out applications, I run errands, and help them out legally, ( court issues, minor things) I fell like someone stuck a stick in my tire spokes! LMAO WHEW, I will hush on that! sorry.
I went from doing everything, to nothing. I did looke up the pharma. companies and got a few phone numbers, and I will call them Monday. I got the one for Trileptal, the one my doc wants me to take.
Thank you for your help, so much. Bless you.

[Kristina112380]

Molly,
I understand you completely! I am having a hard time understanding it. I have had to slow to a near stop. I had to give up my DL also, and I really had in my mind that if I didnt have time for it, it wouldnt happen.lol Well, it showed me what it would do if ignored. (red face) (breathe) lol Anyhow, I shouldnt have ignored it that first time. The second time whipped my behind! lmao I feel lazy, ya know? I wanted to finish my school, and I was nearly done,( 2 days from finishing real estate, and then to my exams) I felt so MAD! I can't even concentrate enough to read directions on a tv dinner. lol
Thank you for your advice, and kind words. They are much appreciated.

[Kristina112380]

homemom,
Wow, I forgot they could give me that. Uh, I think I may not qualify. I havent been working in a couple years, because I was in school. before that, I was on again off again, because I was married and we split up alot,lol. (Now everything is ok)
Anyhow, I was thinking of just getting a disability lawyer, or at least talking with one. ???
I know I would mess everything up trying it on my own. RIght now, I can't really comprehend things on a simple newsletter from school. lol
Oh, and the t/c, wow. I thank you for telling me. See, I stayed out for a few hours, like 3 or 4. I dont know if they gave me an anticonvulsant or what! I was REALLY weird when I woke up. lol The very first time it happened, when I ingnored it, I woke up after like a minute or 2. This time, it hurt me,and I hit the concrete floor with my head. (they said no concussion) We went to the Dollar tree, and it was around 11am. When I woke up in the hospital, it was after 4pm. I still cant remember but bits and pieces of that whole day,lol. The whole week in the hospital is fuzzy too. ( i had to go back because I had what I thought was dizzy spells, they said was more seizures) whew.
Can you suggest any jobs I could handle or try handling? What would be safe for me to do? I have 5 yrs.daycare exp, I have ben an E911 disp, worked in a sawmill(vda) and well, many things,lol. I dont want to be alone. I am even scared still to go in public.
Not to mention, I cant drive.
Really? retirement? YOu cant even get that? OH, I have a lot of learning to do! lol
Thank you so much for your help.

[tinasmom]

Our local foundation will help with a small amount of meds in emergency situations and then they help find resources for the person. Life is so full of twists and turns, some good and some not so good. Sometimes when things happen I think it's just a way of telling us to slow down because we need to take care of ourselves. Hopefully you will be able to change meds and start feeling better, then you could do some small volunteer things again.

[homemom360]

as far as the disability, go ahead and file the first time on your own, most attorneys want that "denile letter" so that they know you at least have the basic qualifications for disability. i thought about the lawyer thing last year when i was going to file for mal-practice, and you know what a simple letter to the clinic and thier insurance and i had a settlement in less than three months, had mr. legal gotten involved it would have been three times as long and most of my money would have been his in the end.
as far as jobs go, i'm going back to my roots, grocery, the bagging and stocking part, it is low key and you always have someone watching you, and they know how to deal well with "people with special needs".
if i can be of any other help let me know...
here's to good health.

[ziggidypoo]

#1: Work History

#2: Medical Records for last 2-10 yrs if possible

#3: Fill out HUGE Social Security booklet - put down EVERYTHING

#4: Go to ALL appointments they as you to go to

#5: Fill out ALL paperwork that they send you

#6: WAIT

#7: WAIT

#8: WAIT

I had had disability once before so it only took 1 1/2 yrs; a friend took 3-4 yrs before she was approved.

They automatically deny all 1st applications. Then, get a disability lawyer, it helps, then file appeal before date on denial.

Then, you have to go through most of it again and wait wait wait again.

NOW, it is MUCH harder to get approved than in 1997 when I was last approved. They have spent millions on me over the years.

I hope it all goes well.

DO NOT GIVE UP HOPE.

KEEP documentations of EVERY medical/mental problem however small.

KEEP documentations of EVERY TEST AND APPT.

KEEP documentations of EVERY seizure.

KEEP documentations of EVERY failure of work.

KEEP documentations of EVERY employment application denied.


Hope this helps in some small way. DON't GIVE UP!!



PS: once approved you have to go through it all again in 6 mos to 1 yr reapplication.

Later, once REALLY in the system, they only reapply you every 2-3 yrs.

KEEP ALL DOCUMENTATIONS - I can't stress that enough.

I personally cannot remember anything and so I must live in an Assisted Living Facility and they get my check every month and I get a small allowance. Have a doctor here twice a week. Nurses give out medications because I forget. 3 meals and 1 snack a day.

[Kristina112380]

Thank you both.
that is a lot to take in at once, lol but I will try, and I will let my mom know. (she is helping me a lot right now)
* homemom*File myself first? ok, I know where the office is here; I can go there.
*zigidypoo* Assisted living facility? I'm sorry. I am blessed to have family there to remind me of everything. (well, most things.)
I hope everything gets better for you guys as well.
I am going to the State park today for my birthday, and I am scared. I haneb't been that far from the house since it happened.(Oct. 11th) But, I AM GOING to try! lol I have my whole family there with me. (smile) so, here it goes! (nervous lol)
Thank you both so much! HAve a wonderful day. I will pray for you!

[dfwtexas]

Go see a disability attorney with all the information. They will let you know if you have a case with a good chance for approval. If they think your case would be "borderline" by the almight government, they can assist you in getting what you need to qualify. It sad when we live with a system who job it is relates to denying people who are in need.
Both my first huband and cousin were dying of cancer only to be turned down twice for disability. My x got approved the week he died. My cousin went thru disabilty attorney on the third try, but her first check came in the mail the week she died.
I know there are a lot of checks and balances in the system because there are a lot of people who abuse the system, but the sad part is they know how to work the system while the ones in need don't know how to play the game

[Kristina112380]

that IS sad, but true! Thank you. I will see if I can at least find one to consult.

[brain]

Here's one important information; Once you
apply for Disability, DO NOT APPLY FOR IT AGAIN,
it will only mess everything up!

INSTEAD, APPEAL, and keep appealing, it's faster
this way.

[Kristina112380]

10-4. I didnt know that. thank you.

[C0urt]

I need to bump this thread, i was denied the first time around. appealed once 1.5 years ago. and re-applied recently. part of their reason for denying me the first time was, " I spoke to clearly." That still aggrevates me.

None of them have ever asked how many times I have been to an e.r. or an emegancy room. And they haven't asked how often do I have seizures. I lost all my paper records when my apt burned down. so I am lucky to have the few names and numbers I have. my current doctor will not give me a note about work abilty, and it took 7 months To see a neurologist. It never dawned on me people fake epilepsy for disabilty until someone pointed it out.

I am glad this thread is here.