Do yourself a favor, don't go down to part time if you can help it, if you can get a doctor to go to court with you, go straight from full time to not working. It'll kill you in the short term, I know, but in the long term you'll actually get all the disability pay you deserve. SSDI is based on the last two years of your income, and if your income was only part-time income, then that's what it's based on.
My biggest problem is fatigue. It's been getting worse lately. And yet it's like it's totally being ignored.
I need new doctors. I miss my docs up in jersey, I had at least one who actually *listened*... It's a rare thing in docs nowadays.
I'm sorry you have to deal with all of this crap... When my MS has flared up badly I've had everything from spasticity to pain to numbness to fatigue to the "MS Hug" (feels like there's a box around your lungs and you can't breathe)... I've been lucky that in the last few years that most of it doesn't show. But it's only lucky in the respect that people don't see me as my disability. It's unlucky in that they won't take it seriously, either. Especially because multiple sclerosis is so random that I can be fine one day and suck the next. A lot of the time I'll be "fine" only because I'm borrowing spoons from tomorrow, and I'm going to pay for it later. It's the only way I've lived through recent job interviews.
Good luck. I'm really glad I posted about the invisible disability week, because dglenn isn't the only one who's since posted about it... And the more people realize what the "big deal" is, the better it will be on those of us whose disabilities cannot be seen.
I'm actually working part-time now, and making better money than I ever have before. Part of that is because I went from being an employee to a consultant, and now I'm charging almost twice what I was making before. It's working out well, because I only work 3 days per week, meaning that if I know a crash is coming, chances are I can put it off until I don't have to work. I've missed very little work in the past year compared to when I was working full time.
SSDI is based on the last two years of your income, and if your income was only part-time income
Not a problem: I live in the jolly old Province of Ontario, so disability is around $1000 a month regardless of whether I was making minimum wage before becoming unable to work, or what. Thing is, I can't keep the doctors from giving me these nice, positive reviews: "She can work if she can find suitable employment." The problem is, it has taken me eight years or so to find it, and I've been pretty much destitute in the interim...
Ah, with canadian healthcare, you can afford to do the consultant thing... I would do it as well if it weren't for the fact that I'd lose my benefits, and my husband's prescription benefits suck (only does a max of $1500 per quarter, and Rebif costs about $10,000 per year).
Nice to know how the canadian system works, though... I didn't realize that's how they do disability up there.
Good to know you can work as a consultant, though!
One other nice thing about being on disability is that my prescription drugs would be covered. As it is, I have times where I sort of do an end-run around the system. I'd vote for someone who'd put pharmacare on the provincial health services in a heartbeat, as would likely 90% of everyone else.
One nice surprise -- because I have strabismus (which is considered a "medical condition"), my recent eye exam was covered by the province. The "free checkup every two years" thing stopped for some reason or other, probably largely to do with a series of antigovernment Premiers we've had around here...
Interrobang's in Canada; I'm not sure how similar/different their closest paralel to SSDI is.
And I hear you regarding the mixed blessing of invisibility: I hate being treated as fragile or crippled (even when I need to be treated that way, as folks who've tried to care for me can attest), so I'm glad to be able to pass for able-bodied -- especially since my self-image, after nearly a decade and a half, still hasn't caught up to my medical reality. At the same time, when people a) fail to believe and accomodate my disability, or b) understand when reminded but forget often because there's no visible reminder constantly there, the invisibility is a liability.
Yeah, I want to eat my cake and still have it. But I'll try to make the best of the hand I'm dealt, I guess, and hope spreading a little education helps. Where I get bitter about it is when it's the doctors ignoring or trivializing things.
The example I'm most annoyed about was more than ten years ago and still upsets me enough that I have trouble mentioning it without ranting. (Short version: if I can no longer do my job because of it, you don't get to tell me I "have nothing to complain about".)
Fatigue seems to be even harder to get people to take seriously than unexplained pain. There seems to be a lot of "oh, everybody gets tired sometimes," balanced against roughly the same amount of, "well you must be depressed". (Yes doctor, I am aware that depression can cause fatigue -- and pain -- but the timing of the symptoms doesn't match that diagnosis <verb> you very much.)
As for the "not listening" thing, there's that whole "we want you to try antidepressants again" refrain that keeps comin' around again on the guitar (whether they think I'm depressed or not -- antidepressants are often used to help regulate sleep in fibromyalgia patients). Gee, you'd think that my having explained nearly offing myself due to drug-induced depression and a whole collection of paradoxical reactions to psych meds would make that obviously a bad idea ...
There's another difference between me and you: I can't pass, and I try hard. On the other hand, the fact that I do try hard means that everyone thinks I'm "basically normal except for limping," and it ain't so... That's more or less what I meant about "visible/invisible" up there. Yes, it's obvious that I have a disability. What's not obvious are the insidious, genuinely trouble-causing effects. :(
Of course, I'm preaching to the choir, if not the clergy here.
Re: Visible/Invisible
My biggest problem is fatigue. It's been getting worse lately. And yet it's like it's totally being ignored.
I need new doctors. I miss my docs up in jersey, I had at least one who actually *listened*... It's a rare thing in docs nowadays.
I'm sorry you have to deal with all of this crap... When my MS has flared up badly I've had everything from spasticity to pain to numbness to fatigue to the "MS Hug" (feels like there's a box around your lungs and you can't breathe)... I've been lucky that in the last few years that most of it doesn't show. But it's only lucky in the respect that people don't see me as my disability. It's unlucky in that they won't take it seriously, either. Especially because multiple sclerosis is so random that I can be fine one day and suck the next. A lot of the time I'll be "fine" only because I'm borrowing spoons from tomorrow, and I'm going to pay for it later. It's the only way I've lived through recent job interviews.
Good luck. I'm really glad I posted about the invisible disability week, because
Re: Visible/Invisible
SSDI is based on the last two years of your income, and if your income was only part-time income
Not a problem: I live in the jolly old Province of Ontario, so disability is around $1000 a month regardless of whether I was making minimum wage before becoming unable to work, or what. Thing is, I can't keep the doctors from giving me these nice, positive reviews: "She can work if she can find suitable employment." The problem is, it has taken me eight years or so to find it, and I've been pretty much destitute in the interim...
Re: Visible/Invisible
Nice to know how the canadian system works, though... I didn't realize that's how they do disability up there.
Good to know you can work as a consultant, though!
Re: Visible/Invisible
One nice surprise -- because I have strabismus (which is considered a "medical condition"), my recent eye exam was covered by the province. The "free checkup every two years" thing stopped for some reason or other, probably largely to do with a series of antigovernment Premiers we've had around here...
SSDI
And I hear you regarding the mixed blessing of invisibility: I hate being treated as fragile or crippled (even when I need to be treated that way, as folks who've tried to care for me can attest), so I'm glad to be able to pass for able-bodied -- especially since my self-image, after nearly a decade and a half, still hasn't caught up to my medical reality. At the same time, when people a) fail to believe and accomodate my disability, or b) understand when reminded but forget often because there's no visible reminder constantly there, the invisibility is a liability.
Yeah, I want to eat my cake and still have it. But I'll try to make the best of the hand I'm dealt, I guess, and hope spreading a little education helps. Where I get bitter about it is when it's the doctors ignoring or trivializing things.
The example I'm most annoyed about was more than ten years ago and still upsets me enough that I have trouble mentioning it without ranting. (Short version: if I can no longer do my job because of it, you don't get to tell me I "have nothing to complain about".)
Fatigue seems to be even harder to get people to take seriously than unexplained pain. There seems to be a lot of "oh, everybody gets tired sometimes," balanced against roughly the same amount of, "well you must be depressed". (Yes doctor, I am aware that depression can cause fatigue -- and pain -- but the timing of the symptoms doesn't match that diagnosis <verb> you very much.)
As for the "not listening" thing, there's that whole "we want you to try antidepressants again" refrain that keeps comin' around again on the guitar (whether they think I'm depressed or not -- antidepressants are often used to help regulate sleep in fibromyalgia patients). Gee, you'd think that my having explained nearly offing myself due to drug-induced depression and a whole collection of paradoxical reactions to psych meds would make that obviously a bad idea ...
Passing
Of course, I'm preaching to the choir, if not the clergy here.