Disability?

beatUC said...
the pro -surgery thugs are at it again. Where is the respect and empathy?

I believe it went out the window with "I'd rather be disabled for the rest of my life than have an ostomy," and "I'd rather die than have an ostomy". I'm not sure if people here realize this (honestly -- I think they either don't realize it or don't realize that there are users here with ostomies), but telling someone that you would rather die than live like them is very, very hurtful.

To the OP, "can't change careers" is not an acceptable justification for receiving disability. If you are capable of doing work -- any kind of work, not just your chosen career -- you will not be eligible for federal disability. That's the way it goes.

I don't want to offend the pro-surgery crowd and the following just applies to me. I wouldn't take offense if anyone called me an idiot for it. I'm not a very rational person when it comes to having body parts getting removed.

Like some of the sentiments expressed here, I would probably die before getting the bag. Like with what PK mentioned in another post, I'd sign myself the **** out of the hospital and then tell the doctors to **** off. Anyone see that well-acclaimed science fiction movie district 9 back in 2009? I'd be a raging animal like Wikus. This is YOUR body and those clowns in white coats could not care less about what happens to it. They are all too happy to perform the procedure and cut parts out, but not deal with the consequences afterwards. If something goes wrong, tough luck. A sorry won't cut it.

I wouldn't be able to live with not trying everything, even if there was a 99% percent chance it wouldn't work. I'd cling on to that 1% chance like a mountain ledge. That's just the kind of person I am. I had medical professionals in my family telling me to get surgery. I told them to **** off. I live for proving people wrong and making them regret their stupidity.

If it makes you feel better, I was where you are now not too long ago. A good doctor dissuaded me from getting it around this time last year, when I was desperate for any kind of relief. I would have done it had he given me the go ahead, as I trusted his judgement. Always have hope and continue to work at finding a solution. Take time off, try new therapies, and again, continue to work at it. Work smart and work hard.

Best.

Post Edited (Guardian7) : 5/13/2014 8:06:45 AM (GMT-6)

I suggest that all of you go up to a person in a wheelchair today and tell them you'd rather die than spend the rest of your life in a wheelchair like them. Let me know if you felt like that was a nice thing to do.

You're all entitled to your opinions and they're not stupid but they are mean. If you need to blow off some steam and express an opinion that disrespects the value of someone else's life, do it in private. This board is not private. It is not populated entirely by people with the same body and opinions as you.

How would you feel if a doctor told you that they wouldn't want to live if they had your disease? Do you think doctors should be allowed to say that to their patients? What if a friend told you they'd rather die than be incontinent?

soystud makes a good point. I can honestly say that the idea of dying when my kids are young completely terrifies me. I really can't imagine NOT being there for my kids and my husband. I know that moms die, and that kids and husbands manage, but if I can avoid putting them through that kind of pain, I will.

My UC was diagnosed AFTER my son was born and my UC had been in remission for over three years when I got pregnant with my daughter. So no, I don't feel as if I've been selfish or that my actions are unacceptable.

I have a large family, a job and a very full life, so yea wrong again...

fruitgirl said...

Guardian7 said...

fruitgirl said...
My UC was diagnosed AFTER my son was born and my UC had been in remission for over three years when I got pregnant with my daughter. So no, I don't feel as if I've been selfish or that my actions are unacceptable.

But if you were in remission for most of that time, how could you say you were sick? Would not the well being of your kids be compromised if you were chronically ill all the time? Why do people choose to start families if they can't take care of themselves first?

I assumed (I guess uncorrectly, now that I see your followup) that you were sort of targeting me with the comment that it's selfish to start a family when you're sick. I do still have a chronic illness. I think I could deal with a moderate UC flare and not have it impact my kids too much, but I know a severe UC flare would be tough for them to deal with -- it was crazy hard when I was so sick when my son was an infant.

But, that's why I'm pretty sure I'll have surgery if my UC gets to the point that it's no longer well-controlled with meds. I don't want my UC to negatively impact my kids, and it will if I'm in a severe flare.

No, I wasn't attacking anyone. I think people should prioritize their well-being first before choosing to start families. I see it all the time. kids suffer because their parents are just not there for them, usually because these moms and dads have their own problems that were never sorted out (debt, no job, no income, poor health, etc).

I wouldn't be able to take care of anyone, let alone myself, if I were depressed and sick all the time. If surgery would help you do that, then wonderful. I'm not so sure I would be able to start a family and deal with the complications surgery and having a bag at the same time.

Very good point, soy, about the "I'd rather die" folks clearly having nothing to live for! But how sad is that, to rather be dead than have any sort of perceived... I don't know! What exactly is it about an ostomy or j-pouch that people find so horrific? No way would I rather be dead than have one! Why not rather be dead than pooping your pants in public, or stuck at home in fear, or living in the bathroom, or drastically altering one's diet, etc, etc??? Where does one draw the line- I can honestly think of zero scenarios that I can say "I'd rather be dead then....."

There is nothing wrong with death- it's just another phase, no need to fear it, etc. No need to revere it, though, either! You are talking about depression, but how do you connect the j-pouch or ostomy to depression? And then why not connect UC to depression? You must have a rather rigid set of guidelines to live by. Are certain things worse than death to you? Just UC? Depression is worse than death??? Believe me, I'm no Miss Mary Sunshine.... but I do enjoy life though, I want to see what happens, how it unfolds, on its own terms. I'm not ignorant enough to think that I'm in charge. (I don't mean "god" either, I'm basically an atheist!) If disease is part of my life, so be it. If strife, sadness, etc. are with me, then they are. I guess some people just can't handle much.

In my experience, a lot of people say "I'd rather die than (whatever)", but when the crunch comes, most of them don't actually choose to die. Often this is something people say when they don't have the certainty of death staring them in the face. If people really do choose to die, IMO that's their choice and I won't argue with them. Tragic, but not really my business.

I've been horribly sick with this disease and I've been in good remission. Never anything in between. I've been on the verge of surgery but grateful Remicade came along for me and I didn't have to do it. I've been so far from that level of sickness that it isn't even a consideration to me. I've also been so depressed I prayed to die, and only didn't try to get there alone because I was afraid of failing and being severely incapacitated along with the depression.l

I think either choice is viable. I do not, however, think I should be required to support someone else who is able to work or to become well enough to work but chooses not to. They have a right to say no and to remain too sick to work; I have a right to not pay them for it.

I know that sounds cold, but if you could see so many people who are on disability because they choose to keep using drugs, to stop taking their anti-psychotics, to not take care of themselves, you would see where I speak from.

Yes.

Let me chop my hand off anytime it gets a cut while we're at it. Time to buy a machete knife. Think I'll grow another one? Any suggestions, fellas?

Dude, the real problem with this thread is that a person who is having a very difficult time asked about experiences getting disability for UC and was attacked for not wanting to get surgery when there might be many other factors involved, including depression, and who knows what else. Who are we to judge?
Where is the respect and empathy I ask?

beatUC said...
Dude, the real problem with this thread is that a person who is having a very difficult time asked about experiences getting disability for UC and was attacked for not wanting to get surgery when there might be many other factors involved, including depression, and who knows what else. Who are we to judge?
Where is the respect and empathy I ask?

That's not the reason the OP was "attacked". The offense was taken, and voiced, due to the implication that having surgery would leave someone permanently disabled and unable to perform certain jobs/tasks when the reality is quite the opposite. There was never a push for or against the OP to have surgery or seek out one type of treatment over another until somebody riled everyone up into a pro surgery vs con division.

To answer the OP's original question, as others have said, you can qualify for temporary (state) disability during flare ups that leave you unable to work. You'll need to fill out the proper paperwork which you can usually find on your states division of labor website. There will also be paperwork for your doctor(s) to fill out as well as sometimes your employer, depending on the state. The state benefits usually pay out around 2/3 of your weekly earnings for a certain amount of time (in Nj it payed out until I reached my allotted total amount which was 2/3 of my yearly earnings from the base year/period. In CA it continued to pay out for almost a year, but that may have been because my GI filled in on the paperwork that I'd be unable to work for that long).

As far as federal disability/SSI/SS benefits go - the federal program is set up for individuals that have a long term or permanent disability and have exhausted their temporary benefits. It's specifically set up for people who will be or have been disabled and unable to work for a year or more. From what I understand, IBD DOES qualify for federal benefits, however the application process is extensive.

You need to give your medical history, send in all of your medical records, (I think they might also request additional statements from your doctors). They will also send forms for you to fill out regarding your work history/skills and education in order for them to determine if you are able to perform any work at all (regardless of whether it's your actual profession - ie you're a nurse so you tell them one of your major problems is you can't stand on your feet for 12 hours a day due to illness, however you have administrative experience so they'd need to determine you are unable to perform at a desk job as well).

There are also questions regarding your mental state (depression, mainly), as well as your ability to perform everyday tasks (can you cook for yourself, are you responsible for anyone else like children, pets, can you do your own laundry, can you drive, etc). It is an extensive process and can take up to four months to receive a determination. They also don't start payouts until after the five month mark from which you state you became disabled (say you put your disability began January 1, your first payment wouldn't be until June if you are found eligible).

Most people are denied the first time around, but after one appeal (where you have to go in for interviews, see more doctors I believe) the amount usually jumps up to a 7/10 approval rate or something like that. Like I said it's an extensive process and you need to do everything you can to prove every step of the way why you're unable to not perform any work at all.