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Old 04-10-2010, 10:19 AM #21
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Finz, about the fireman -- OH MY GOODNESS!!

I thought about it some more -- IF they "caught" me walking, even a moron would see that "something" wasn't right. I sort of drag one leg and walk like I'm about 70 something and I'm only 50 something. All the people WITH my condition have the same characteristics -- GOOD days and BAD days. We ride a rollercoaster. So, thanks -- -- I feel much less stressed about this!
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Old 04-10-2010, 11:53 AM #22
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very sad people would screw it up for those who deserve or at least make it harder for them to get.. but people should not get free money. i wish o could work again i really loved my job and the people i made friends with over the 20 plus yrs i was there. and i felt productive and useful and needed.
It is sad, we would get a lot of tips from neighbors. A lot of them would say she or he is lazy and I'm tired of paying for them to sit around. I couldn't argue with them but I know that's not the truth. I've been trying to get a government run program for people like you that want to work, but by the time your dressed for work your already worn out. You could work from home at your own pace and would earn credits to pay bills. It's hard right now because there are so many empty buildings that need to be filled, but I hope one day soon to be able to present a business proposal.
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Old 04-10-2010, 12:03 PM #23
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Finz, about the fireman -- OH MY GOODNESS!!

I thought about it some more -- IF they "caught" me walking, even a moron would see that "something" wasn't right. I sort of drag one leg and walk like I'm about 70 something and I'm only 50 something. All the people WITH my condition have the same characteristics -- GOOD days and BAD days. We ride a rollercoaster. So, thanks -- -- I feel much less stressed about this!
So where in Tenn do you live Jana? Only kidding. Your stressing for no reason. The thing is you can't do Substantial Gainful Activity. There were many people that after viewing the tapes we would dismiss. Just do what you can and don't get hurt any worse that you already are. Enjoy your good days.
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Old 04-10-2010, 12:33 PM #24
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So where in Tenn do you live Jana? Only kidding. Your stressing for no reason. The thing is you can't do Substantial Gainful Activity. There were many people that after viewing the tapes we would dismiss. Just do what you can and don't get hurt any worse that you already are. Enjoy your good days.
ROFL!!!!!!

Actually, I am not "hurt" in the WC's "sense" -- no broken bones, torn ligaments, back problems, etc. I have a rare medical disorder that is something like a cross between Multiple Sclerosis and ALS. I have bloodwork to "prove" my condition.
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Old 04-10-2010, 03:57 PM #25
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ROFL!!!!!!

Actually, I am not "hurt" in the WC's "sense" -- no broken bones, torn ligaments, back problems, etc. I have a rare medical disorder that is something like a cross between Multiple Sclerosis and ALS. I have bloodwork to "prove" my condition.
Well take care of yourself, it sounds like your gonna be sick for the rest of your life, they don't know what it is? Try not to stress, you have enough to worry about.
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Old 04-10-2010, 08:32 PM #26
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Well take care of yourself, it sounds like your gonna be sick for the rest of your life, they don't know what it is? Try not to stress, you have enough to worry about.
11.12 Myasthenia gravis. With:

A. Significant difficulty with speaking, swallowing, or breathing while on prescribed therapy; or

B. Significant motor weakness of muscles of extremities on repetitive activity against resistance while on prescribed therapy.


This is what I've got -- and the SS qualifying "code". I met the "A" guideline. When in exacerbation, I would qualify for "B", too.

It is the same thing that Aristotle Onassis had -- and, yes, it is life-long. But, it usually doesn't kill us -- and it usually doesn't hurt.

Lots of people with ALS are misdiagnosed with Myasthenia at first -- our symptoms are so similar -- and a few with Myasthenia are misdiagnosed with ALS. ALS, of course, is progressive -- Myasthenia usually reaches a certain point and then stops. Myasthenics are better in the morning and worse later in the day. ALS patients just get worse and worse until they usually die.

Now that I HAVE SSDI, I have NO complaints -- this is a disorder that I can live with -- not nearly as life-altering/life-threatening as so many. I feel blessed in many, many ways. True, I cannot work -- but, if I am careful NOT to overwork my muscles, I don't HURT. I can't breathe well, but, I have learned how to cope with it. I sound like a drunk or stroke victim when I talk -- so, I mainly write by hand or use the computer. A speech therapist taught me how to swallow when I am having a hard time. So, overall, things are good compared to so many other people who are disabled!

I cannot stress enough that GETTING disability changes your perspective a LOT!! That is one of the reasons I spend a lot of time in this forum. When I got denied the first time, I was devastated -- sitting at the bottom of a deep dark hole. I didn't know what to do -- where to turn -- the world was spinning out of control. When I finally gathered my wits, started contacted my legislators, got a speech evaluation, got a GOOD LAWYER -- and won my appeal in three months -- I got my life back. Now, I feel like I need to "hold the hands" of others who are in similar situations. Unless you have been there, it is hard to describe how awful that place feels.

Legal, thank YOU for taking so much of your time to help everyone with their awful struggles. You may never know what a difference you have made in someone's life.
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Old 06-08-2010, 05:45 PM #27
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Wow, I cannot believe that one people actually lie about a disability! I for one do not want to be disabled so I cannot believe people wold lie about it. YUCK!!!

I have my good days as well as my bad and unfortunatly my bad days out weigh the good. I would hate for someone to spy on me but I am pretty sure they have. I have been on LTD for 2 yrs and on SSDI for 10mnths. There are some days that i can go to the gym and walk in the water or lay on my raft. Then there are days that I cannot get out of bed. I really would rather work than deal with pain but I am dealing with the cards that I have been dealt. I have Lupus and poly-myositis with a little crohns for fun so most of my days are on my couch.

As for the vacations, I really think that we need them just as much as people who work. We have to deal with our illness 24/7 not just 40 hrs a week!!!

I hope everyone has a good day! Enjoy what we can and do what we can when we can do it
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Old 06-08-2010, 07:54 PM #28
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I agree with tadpole...we need and deserve vacations. I have a hard time believing we could get in trouble for that. But just in case, I have not told anyone except my mom and my husband that I was approved for disability. My one sister would never speak to me again.
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Old 06-15-2010, 08:56 PM #29
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So I called and asked if this was something that could be done and they said yes that you can. Just thought I would let you all know!
I dont think that I would let everyone know as you have seen people (neighbors) that say "oh well they look fine so they should work" People can be mean so I would keep your business just that, your business!!
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Old 06-22-2010, 09:25 PM #30
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So I called and asked if this was something that could be done and they said yes that you can. Just thought I would let you all know!
I dont think that I would let everyone know as you have seen people (neighbors) that say "oh well they look fine so they should work" People can be mean so I would keep your business just that, your business!!
please tell me i am confused did you call ss to find out if you can take avacation and they said they would do someting if they found out ?? i read the whole post sorry i am confused i get that way very easy
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