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  #26  
Tadao Tadao is offline
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Old Apr 8th, 2008, 04:25 PM       
Sometimes people think of internships as volunteer work. This can cause confusion.
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  #27  
Pandajuice Pandajuice is offline
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Old Apr 8th, 2008, 05:49 PM       
I feel for you Tadao. Having a baby (now a toddler) who doesn't sleep very well, I know what it's like to miss out on a lot of sleep and how debilitating that can be during the day.

I'll definitely look up your condition as I am curious. Thanks for sharing it with a stranger.
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  #28  
Pub Lover Pub Lover is offline
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Old Apr 8th, 2008, 06:02 PM       
You're not a stranger! Pandajuice, you're our old pal now!

In internet terms.
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  #29  
Pandajuice Pandajuice is offline
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Old Apr 8th, 2008, 06:10 PM       
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You're not a stranger! Pandajuice, you're our old pal now!

In internet terms.
Aw I'm touched!
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  #30  
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Old Apr 8th, 2008, 06:12 PM       
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  #31  
Tadao Tadao is offline
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Old Apr 8th, 2008, 06:16 PM       
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Originally Posted by Pandajuice View Post
I feel for you Tadao. Having a baby (now a toddler) who doesn't sleep very well, I know what it's like to miss out on a lot of sleep and how debilitating that can be during the day.

I'll definitely look up your condition as I am curious. Thanks for sharing it with a stranger.
Here you go Panda, this video does a real good job in explaining what A.S. is.

http://video.google.com.au/videoplay...5&q=ankylosing
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  #32  
Kitsa Kitsa is offline
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Old Apr 8th, 2008, 06:21 PM       
This is completely about you, not me, so please forgive the background story. I'm just trying to make sure you know where I'm coming from to see how well it matches your experience.

I'm disabled, because of being born with spinal cord cancer and because the treatment I had to have for the cancer fuxored me up bigtime for the rest of my life. I worked fulltime from my early teens to around age 27 and was well on my way to being a Productive Member of Society, taking med school classes by special permission as I prepared for the MCAT, when I had to leave school because my parents' insurance dropped me. Working was my only way to have any insurance, since no one would cover me due to my pre-existing (since birth) condition. I was working fulltime when my health REALLY began to crap out on me. I couldn't lift a patient's chart without hideous post-radiation muscle spasms, and since I was the only one who did my particular job. taking a prearranged day off to go to the neurosurgeon's became a ridiculously huge issue. It got to where I would use vacation days to see the doctor, and every time I got back there'd be a damn "attendance review" because my supervisors didn't like doing the dirty work themselves, even for a day.

I'm one of those people who doesn't look disabled at first sight, most of the time. I'm skillful at hiding my scars and the big divots out of my body, and most people only see someone with a weird, stiff, tiny neck who walks funny sometimes. So it was at my last "attendance review", when I had been gobbling anti-inflammatories and quite literally killing myself to get through an 8 hour workday, when my supervisor (who was a MEDICAL PROFESSIONAL, who should have KNOWN BETTER) accused me of faking my condition. It was the closest I've ever come to hitting someone. I damn near had a breakdown, and because I cried they sent me to the company "counselor", who said the supervisor was the sick one. I realized I just couldn't do it anymore, I couldn't keep up with a job and a field that are demanding enough even for a normal person, and it was what I had been trained for. So I broke down and accepted disability, which I had been fighting all my life.

That being said.

When you're on disability, you get a mixed bag of reactions. Some people are understanding, some are nosy, and some are plain dicks. If they're not falling all over themselves to snoop out why you have a placard or Medicare card, they're acting if you're fishing through their pockets for a wallet. Suspicion comes with the territory, especially if you don't have an external appliance like a prosthesis or aren't wheelchair-bound (which I am, but not all the time, so many people don't see it. )

I'm perpetually worried about my Medicare because I would be 100% fucked without it. Cancer, and all that came with my variety of it, isn't cheap. Therefore, I'm completely up-front and vocal about my capabilities.

When I can manage it, I make packages to donate to cat rescues. In my healthier days, I invented a cat toy that was very successful, but I'd never have been able to make a living with it (the spasms alone would stop me even if I could have managed otherwise). So when I donate (and I consider it "volunteer work" because I make the toys), I make it very clear that it takes me forever to crank out even one of these things and it's not exactly a productive or profitable enterprise. By being up front by detailing exactly what's behind what you are capable of doing, it helps with people who say "if you can volunteer, you can work".

I wouldn't advise trying to hide anything. Just be completely honest about what you can and can't do. If you can get out of the house for a couple of hours on good days, and good days are few and far between, make sure people understand that. Otherwise, they get the idea that you're simultaneously traipsing around, tra-la-la-la-la, and bleeding them dry when that isn't the case.

If you want to volunteer, don't overextend yourself...the previous posters were right about volunteering jobs being just as strenuous as paid ones. Stick to something you can manage, and don't mislead them (pr yourself) about your capabilities. If you have a doctor you see regularly for your disability-relevant issues (and I don't know who you see more...orthopaedic surgeon? neurosurgeon? neurologist?), ask for their input as to what you can and can't handle. That way, if there's an issue, you can show them what your physician's official opinion was.

I hope that helped, and again, this wasn't about me, I was just trying to give background so you could see where I was coming from with my advice.

Let me know if there's any more I can do to help, and I apologize for my shitty typing...I'm on bedrest and trying to type flat on my back (damn m's and n's).
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  #33  
Tadao Tadao is offline
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Old Apr 8th, 2008, 07:02 PM       
I was hoping you you post Kitsa. I know you weren't trying to make it about you, but our situation is very in line and I thank you for you story.

I see a Rhuematologist for my issue every month. I too was a high paid employee 40 hours a week up until last year. I've been hiding my condition and avoiding disability up until I finally got fired over my performance. I became really really ill last year. I now realize that any job I take, I can't perform at the level they pay for and I would only harm companies and other people who need to be in the work force

I'm looking to work maybe 2 days a week. Cover someones weekends. I know that when I was a manager I would have loved to have help on the weekends for free.

I know all about the reactions. I look perfectly healthy, it's all on the inside for me. Nothing shows. I have huge bouts of energy that the public sees, and huge bouts of lazziness that only my family sees. I've also been on the forums for people with my condition, so I know what to expect. I won't be using any placard unless I go to Disneyland. People are huge assholes when they think they know it all and my family doesn't need to be punished for it.

Thanks Kitsa, you make me feel normal
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  #34  
MetalMilitia MetalMilitia is offline
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Old Apr 9th, 2008, 08:38 AM       
I liked the part about inventing cat toys!
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  #35  
AChimp AChimp is offline
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Old Apr 9th, 2008, 10:15 AM       
Imaginary medical condition! Your real disability is laziness. (

Get a job, you bum.
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  #36  
Tadao Tadao is offline
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Old Apr 9th, 2008, 10:37 AM       
Shhhh!!! I'm leading up to asking for money from you guys.
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  #37  
T-Rex T-Rex is offline
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Old Apr 9th, 2008, 10:49 AM       
Remember the Seinfeld episode where George tries to look destinguished by using a walking cane and then his employer thinks he's disabled? Needless to say, hilarity ensues.
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  #38  
DeadKennedys DeadKennedys is offline
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Old Apr 9th, 2008, 11:25 AM       
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Originally Posted by Pandajuice View Post
Sometimes I find it invorgorating to argue and debate a point I don't necessarily agree with just to see if I can.
I hate when people do that. It's unAmerican

http://i-mockery.com/forum/image.php...line=120747831

Also, this?! I try very hard to avoid this fucking show. I don't want it on my I-mockery

And T-Rex, you're kind of an annoying hipster
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  #39  
Fat_Hippo Fat_Hippo is offline
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Old Apr 9th, 2008, 11:35 AM       
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I hate when people do that. It's unAmerican
Can I do it then?
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  #40  
T-Rex T-Rex is offline
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Old Apr 9th, 2008, 11:44 AM       
I'm not very good at the internet. =(
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  #41  
Pandajuice Pandajuice is offline
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Old Apr 9th, 2008, 12:08 PM       
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Originally Posted by DeadKennedys View Post
I hate when people do that. It's unAmerican

http://i-mockery.com/forum/image.php...line=120747831

Also, this?! I try very hard to avoid this fucking show. I don't want it on my I-mockery
Well I guess it's a good thing I'm not IN America at the moment.

And how dare you. No avatar is greater than one that says "I'm cute. I'm angry. Here's a worm." all in one image.
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  #42  
Kitsa Kitsa is offline
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Old Apr 9th, 2008, 01:02 PM       
I'm confused
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  #43  
Tadao Tadao is offline
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Old Apr 9th, 2008, 01:36 PM       
Hey Chojin, you promised me a report!
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  #44  
J. Tithonus Pednaud J. Tithonus Pednaud is offline
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Old Apr 9th, 2008, 03:45 PM       
I have Paget's Disease, formerly known as osteitis deformas. It pretty painful, but I've learned to deal with it and in the last few years my treatment has really stepped up and is less intrusive. I have never gone on disability or on assistance of any sort for the problem and continue to live a physical lifestyle. I just deal with the pain, my tolerance is high thanks to my years of sideshow stunts.

I know that I sometimes require surgery, or just time off, so I generally work seasonal or contract work in the arts, film and not-for-profit industries. Generally I work eight month to one year contracts, projects and shoots with a few weeks or months off in between so attendance has never been an issue. Now I work for myself, so it's never an issue.

Probably the creepiest thing about my condition is that a few months back I purchased a load of late 1800's cabinet cards. There were two in there, sideshow folk, with osteitis deformas. To see what the condition does untreated what shocking.

If you are going to volunteer, with kids, why not be a Big Brother? I doubt that would raise any sort of red flag.

Does the US government not offer self employment funding and opportunities to those with disabilities? I know those programs exist here in Canada.
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  #45  
Tadao Tadao is offline
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Old Apr 9th, 2008, 04:36 PM       
Paget's Disease sounds sucky. What sucks about America is that if I was self supportive, I wouldn't have any health care. I know many places to volunteer, one of my problems is I don't drive, it's too dangerous. I have to turn my whole body to look in the blind spots.
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  #46  
J. Tithonus Pednaud J. Tithonus Pednaud is offline
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Old Apr 9th, 2008, 05:14 PM       
Right, but you could get health care whist self employed, no? I really don't know how any of that works there. We don't have that problem here, but our self employed hours are non insurable, meaning no unemployment if things go belly-up.
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  #47  
MLE MLE is offline
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Old Apr 9th, 2008, 05:38 PM       
Health care here, if self-employed, they will not cover "pre-existing conditions" usually. I think a disease like his constitutes that.
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  #48  
Kitsa Kitsa is offline
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Old Apr 9th, 2008, 06:00 PM       
Most insurances will quickly deny you for a pre-existing condition, anything major (read: potentially expensive) that was present before you applied. I've heard that Massachusetts is the only state that has laws forbidding insurance companies to deny for childhood cancers as pre-existing conditions, but I've been unable to verify that.

The very few insurance companies that don't deny for a pre-existing condition will approve you for insurance in general, but refuse to pay for anything related to the condition. My problems all stem from the fact that I was born with spinal cord cancer, so pretty much anything that came up with me would not be covered.

And then there are some insurance companies that lead you on a little wild-goose chase...you can be approved with a pre-existing condition if you had no treatment for that condition for a year. I fell into this category once, when I was about 9 and my dad changed companies. It was terrifying. Any medical treatment or checkups I had, it had to be self-pay and off the record. If my cancer had returned or if I had some sort of major accident that had worsened my radiation-broken spinal fusions, we would have been probably hundreds of thousands of dollars in debt.

The insurance system in the US is really, really, really screwed up, in my opinion. In the mad grab for money, they've completely lost sight of what they're there for in the first place.

I can understand how people from places that have universal healthcare would be very puzzled by what looks like our unwillingness or inability to get what seems like a very simple thing, if we only put forth the effort. But believe me, around here it's not that simple at all.
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  #49  
Pandajuice Pandajuice is offline
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Old Apr 9th, 2008, 06:24 PM       
Health insurance in the US is pretty screwed up at the moment, you're right. The government really needs to get in there and reform it so these companies can't take advantage of what is basically a required service in the US.

It's still the best health system in the world though as far as I'm concerned, and that's thanks to privatisation and medical professionals who are compensated appropriately for the hard work they do and level of education required. Not to mention that it's a better quality of health care all the way around.

I live in a country that has universal, free healthcare and having seen and experienced both alternatives (private and universal), it's pretty awful. It's abused pretty badly by a lot of people (mostly immigrants who only came to the country to abuse the free healthcare), and to have even the most routine visit to a GP takes weeks of waiting and lot of red-tape/phone calls; let alone seeing a specialist.
Even as screwed up as the HMOs are in America, it's still a better option in my opinion than universal health care.
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  #50  
MLE MLE is offline
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Old Apr 9th, 2008, 08:05 PM       
I'd say it's better unless you're one of the people that can only be covered under universal healthcare, such as kitsa and tadao, because pre-existing conditions keep you from getting your own health insurance.
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