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24 and needing SSI? HELP!!!

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Posted 8/4/2006 1:21 AM (GMT 0)
I haven't had insurance for the last year, and have been paying $200. a month for meds, along with making a billion and one phone calls to hospitals and tech places.  I just moved back to my hometown (which is 3,000 miles from where I was), and immediately started writing a new resume.  Then I had another doc appointment and everything got turned upside down.  I knew things weren't going to be good, because the month before I moved I ended up in the hospital for a week, but I kept telling myself it was fine; it was just a fluke.  I ended up being told that not only can I not drive, but I shouldn't go back to work, either.

It took three years for them to find out why I have seizures, and now it's going to take how much longer for them to keep tinkering with meds to make it so I can function?  When they first started playing with meds, I ended up using a cane for three months, when I had been rock climbing and mountain biking just a few weeks before.  I was the kind of girl who would do any extreme sport, always on the go, and I had one seizure episode where the paramedics dislocated my colar bone from my sternum trying to get me to breathe again, AND I had to take a two and a half month medical leave from work.

I've never wanted to look at epilepsy as a disability.  To me, it's like being diabetic.  You're body has a glitch, and you have to take insulin or sugar, give yourself a little bit of time, and you're back to your normal self.  With seizures you 'twitch and glitch' or 'shake, rattle and roll', give yourself a little bit of time, and likewise.  So why, if diabetics have a 'controllable, but incurable disease' do I get told I have a disability and that I need Social Security income like I'm 90 years old?!

Now I don't know if I can go back to work or not.  I was a supervisor, always on the go.  Yeah, I had a few times where I couldn't go to work, but I was darn good at my job, and loved it.  But I'm 30 grand in debt from medical stuff, which supposedly can be covered if I get SSI, but I never wanted to be the type of person who had to do that.  Plus, I don't know how to tell my parents, b/c my mom's in the middle of chemo for cancer.  So I'm sitting at a friend's home, while she's out of town, afraid to go hang out with friends, because they changed my meds again and now I'm shaking all day and my feet wont listen to me!!!

Have any of you been through this type of thing?  How do you deal with this?
Posted 8/4/2006 2:10 AM (GMT 0)
I know I should be able to get it, it's just frustrating being told I need it, when I'm incredibly stubborn and independent. Not always the best attitude when you're dealing with epilepsy, but I'm working on the 'tude as best I can.
I don't know if I should bug my dad. He has a really hard time accepting the fact I have seizures in the first place, since my parents have never seen me have anything other than the twitches and glitches. I've tried talking to him about many times before, and he's gotten a lot more supportive. He's been asking me if I've found any management openings, which is actually a really encouraging question.
I just don't know if I should tell him what's going on fully, or part of it, or if any of it would be more than what he can handle, since he's there at the hospital with mom all day. I go over there as often as I can, but whenever I start feeling 'off', I excuse myself.
My brothers (2 of them, both older), feel I've been 'doing this' for years to get attention, and the only reason I'm having problems now is because I'm competing with Mom. She's the only one who will talk with me about seizures, and she even told one of the nurses yesterday that I have them! :) I know ultimately it's a decision I have to make; I just wish- well, I want someone to tell me what to say, and I know that isn't what I really need. After all, everyone's feet are shaped differently, so even if we stepped into each others shoes they wouldn't fit the same.

I am REALLY glad I found this site though. It's the first chat room I've ever come into.
Posted 8/4/2006 4:39 AM (GMT 0)

Rogue,

Re: Your SSI (Disibility ins.)

I don't know where you're from but I want to share my story with you.

I also was a supervisor (Administrative Manager, 21 yrs.)

Were you let go b/c of your seizures?   If so, that is illegal. It is a form of decrimination and goes against the Human Rights Code as well as the Constitution.

I'm from Canada and it seems to me that Americans always seem to have a very hard time qualifying for Social Assistance or Disability Insurance but I had absolutely no trouble and either should you if you have a good Doctor that will stand behind you.

VIEW IMAGEI am on disability, have been since February/05. It wasn't hard for me at all. My application went in while I was still working. I didn't even have to apply and just had to supply a medical from my neurologist-no problem, I've been seeing him for 16 yrs. *** Please understand-THIS WAS NOT MY CHOICE. My employer of 30 yrs (Government of Canada) applied for the DI for me and then if Sun Life Financial decides to drop my case then medical retirement will automatically start. After a 5 yr fight to keep my job I was told that my job had become redundant and as a side effect of the meds. it made me slower and messed up my learning ability to learn new tasks.  I don't like people to know that I'm on disability because it has a certain"stigma" attached to it.

 Randy

Posted 8/4/2006 6:12 PM (GMT 0)
I had a job last year where I was told I was either going to be fired or could voluntarily quit if I missed one more shift. Well, I had a really bad seizure one night, and couldn't go in the next day, so I called my boss and say, "I guess this means that I voluntarily quit." Then I called the HR office and told them what was going on, and they said I could take (another) medical leave, and come back to work for the company. By the time they decided this, I had already bought a plane ticket to go stay with friends in another state, and moved out from my apartment. They told me I could transfer, but when I got there, they told me it was a conflict of interest, b/c the girl I was staying with was a supervisor, and even though I worked in a completely different part of the store, I couldn't work there after all. I still feel that was wrong, but I was able to get a supervisor position with another store, with better pay and more hours, so I figured it was a blessing. They were really awesome about the whole seizure thing, and it had nothing to do with my leaving. I left there to come back to Washington state three weeks ago, when my mom was diagnosed with leukemia.
Taking disability isn't my choice either. I scheduled an appointment with my doctor as soon as I got back, and she referred me to go get medical coupons b/c I didn't have insurance. In the course of a few hours b/w different people, the message was made very clear that I need to take some time (an indefinate amount) to get my seizures under control, and needed to get SSI. Before, I had said no, that I was willing and able to work, and would not do that, but now I've been having so many problems, that I have to admit I need some help. With medical debt and expensive prescriptions, even working full time, I couldn't make enough in ten years to pay everything off, and all the billing places say that if I'm on SSI, they will write off the entire amount of my bills. I still feel like I'm doing something wrong, that I'm being lazy to not get another job, but I don't want a repeat of the last two, where I'm in and out of the hospital so often it's not funny.
It's good to hear that you were a supervisor, too, and especially that your employer helped. I've never really got to talk to other epileptics, so this whole thing is kind of foreign to me.

Heidi
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