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This is somewhat a double post with this: http://www.crazyboards.org/forums/index.php/topic/67603-i-just-lost-my-disability-cdr-important/

But I want to focus on one thing here, and I think this is the more appropriate forum section to do it.

Assuming all goes well, or whatever..

What I want to know is - Is it worth it?

If I have to go through the disability revaluation every three years - of which the forms are a detriment of their own in regards to my stability due to the uncertainty/stress/importance..

If shit goes to hell and I have to file an appeal, and do whatever else will come..

Is it worth it?

This is torture to me. Honestly. It pushes me beyond my safety limits and more.

After learning of this I came very close to suicide, pushed in a mental state that wouldn't have come into otherwise by far at my current mental state - it was almost like night and day (and my day is pretty damn low).

If I have to do this every fucking 3 years of my life until I die..

Is that really a life? Is it worth it?

It feels like if I continue to try, I'm going to be punished to the extreme every 3 years. Even more so if I make any advances. And that won't change.

So.. is it worth it? Is the (worst case scenario) devastation that kills all progress I was able to achieve - and even getting punished for that achievement.. something to weather?

It seems like the very nature of the system prevents positive change.

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Do you know what your pdoc and other DRs wrote that totally screwed everything up?  Idk who else could have written something in your review that would cause you to lose SSDI.

 

I would think your pdoc would understand that you need SSDI to get by.

 

And I totally agree with you that the nature of the system prevents positive change.

 

I'm sorry I don't have much advice, but wanted you to know I read what you wrote and am on your side.

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thanks.

I have no idea. I plan on tracking down what the fuck happened with them, but right now, I'm in the dark.

I did call their emergency hotline and impressed on them that I need to be contacted by someone who can address that, or at least research it.

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So.. is it worth it? Is the (worst case scenario) devastation that kills all progress I was able to achieve - and even getting punished for that achievement.. something to weather?

 

Yes, Yes, Yes.  It is worth it.

 

It almost seems as if you are asking 'is life worth it?".  This is your crazy talking.  The days you do fine, you KNOW it is worth it.  Only when we are down the rabbit hole does it all seem worthless.  Only when we are stuck in the mire, do we need to know what is the point of life.  These questions loom large at the worst possible times.  Take a breath, do what you need, and do NOT worry about three years from now.  Who knows what you will be doing, where you will be.  Worry is a waste of time.  I have a doctorate in worrying.  The first lesson is: don't do it. 

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I'm sorry this is getting to you so bad.  Melissa - P l e a s e   Don't get self destructive.  Contact someone asap if you keep getting suicidal thoughts.  You have family, friends (and a lot of CB friends)    I get stuck in the past and make myself miserable at times.   Thanks to my docs and people here (Including help from you) I'm doing better and living in the "now"  more ofthen because thats whats important.  I totally understand being distressed about the future but the great thing about that is that you have the present and that can change it.   Surround yourself with people who love you.  Have you called your mom?  Is there someone who can work on this to help or take the reins for a while?   Be well...

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Yes it is worth it because you are worth it! You deserve to be able to finish school and remain on SSDI until you can sustain gainful employment. IMO going to school part time is no way equivalent to a full time job that you could earn enough to live off of. And we all know too that even living off of SSDI is no walk in the park either.

I'm dpso sorry that this happened to you.

But you are worth it.

How are you doing?

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Thanks. I'm just now able to come back to this. I haven't been able to really deal with anything, but I'm doing what I can to pick up these pieces.

I'm going personally to the SS office tomorrow to file the appeal/continuance of payments thing requested. My mom is taking me. I couldn't get through to anyone on the phone & hours of hold time is too much right now.

It just seems like trying as hard as I do always comes with a price.

You're right though water. I shouldn't base my perceptions of this mess based on the what-if's of it occurring again 3 years from now. I don't really see a distinction between the crazy-thinking and normal thinking though. I mean, I believe that it exists (there's enough personal accounts of it here for me to know that) - but when you're down the hole 100% of the time, there is no other reality to bounce off of. It becomes a non-point. I have to work with the mind that I have & assume it's not completely batshit in how it processes things. I do try to keep it in mind, but it works more like a pie-in-the-sky hope that there is another way for me to think & I'll see it one day.

I'm not being self-destructive Hal.. no need to worry. Actually, my suicidal ideations that are normally present are pretty much gone right now. My depression has dropped below them - for better or worse. Pretty damn ironic that I can't get well enough to make them stop, but I can get worse enough.

 

Yes it is worth it because you are worth it! You deserve to be able to finish school and remain on SSDI until you can sustain gainful employment. IMO going to school part time is no way equivalent to a full time job that you could earn enough to live off of. And we all know too that even living off of SSDI is no walk in the park either.

Thanks.

I completely agree I deserve to be able to go to school. I only have class about 5 hours a week, and I can't even manage that half the time. I'm not sure if SS thinks the same way though. I'm actually worried that a lawyer is going to tell me I have to stop school in order to win. I've already realized that if SS "forgets" to pay me (as I recall happening here once with a continuance), I'll have just enough student loan money to pay my rent through Spring semester before I'm evicted - so not going would be doubly bad.

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Ugh what a mess! If I could walk into that SS office and tell them what's what, I really would! I'm so sorry that this happened to you.

I think it's great that your mom is taking you and you are going to go re file in person. Especially since they aren't answering their phones. Good for you! You are being proactive and taking steps to help you get your SSDI back. You are very brave.

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Yes it is worth it (I have similar here in the UK, for two different benefits.)

One thing that can really help, knowing that the ordeal is going to come around again, is photocopying the filled forms/questionnaires and any other material sent in.

It markedly reduces the time, effort and stress to have that on-hand when the next lot turns up.

Either something very similar will do for each answer, or you'll instantly see what has changed for the better or worse or just changed, going a long way towards generating the new answer.

 

My occupational; therapist is certain that the biggest damaging stressor in most of the people she sees is dealing with with health and benefits bureaucracy paperwork (and that runs double for interviews.)

 

Chris.

 

("When the last politician has been strangled with the intestines of the last bureaucrat, will we still have problems?  Discuss."

Variation of a classic quotation, allegedly used at a Cambridge entrance interview.)

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Yeah, I thought about that the first time around, so I have everything I ever sent in saved and scanned in my computer. And when I went today and filled for the appeal/continuation of benefits, I took pictures of the completed pages on my phone just in case. They ended up copying everything for me though.

It's funny you should say that Chris. The paperwork had a small section to add if there had been a worsening of symptoms since I did the CDR. I answered honestly and put yes - when asked to elaborate, I cited their denial letter and ensuing stress as the precipitating factor. It felt somewhat petty, but it's 100% true.

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  • 2 months later...

I'm hanging in there, but I'm rough.

 

Finally got to the mg level of dopa-agonist med that should become effective against my depression -- only to have the medical condition I've been struggling with decide it's time for a remix of nausea/vomiting symptoms.  One of the side effects for Requip (my AD) is nausea & vomiting... so, yeah.. 

 

Seems that side effect is dose-dependent though.. so now I get to brainstorm and improvise.

 

Intense amount of stress + daily vomiting + a professor being an asshat about missing a single fucking day (seriously?! I have school disability and can miss a shit ton of days by nature, and you're going to bitch about not turning in something ahead of time rather than via email during the class it's due!?) .... *sigh*

 

I'm honestly not sure how I'm doing as well as I am.  I shouldn't really be able to hold all this shit below the surface.. and the fact that I can, isn't exactly comforting.

 

I don't trust it.

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Why do you assume you will be on disability for the rest of your life?

 

Things can change, sometimes quite drastically. You're young enough that said change can happen. 

 

Personally, I had my doubts about ever working again when I was approved for disability and I thought I was going to swing in and out of hospital every few months for the rest of my life. I was wrong, on both counts. I didn't think things would change, but they did. 

 

I guess that's a long way of saying that yes, it's worth going through everything now - because the future can be much brighter. There's always that potential. 

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I'm not assuming.  It's the most likely, but I'm still going to school and doing everything I can to put me in a good place should I be able to work again.

 

Apparently, that's become a negative in getting what I need to live now.

 

I'm glad things got better for you, and I'm doing what I can in case that's the case for me... but not everyone gets better.  You should prepare and hope, but the truth is, you don't know.

 

What I *do* know, is that if they take away my means of living and ability to get healthcare now... I'm screwed.

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@ Cet:

On good days, I think it's worth it, on bad days I don't.

 

I wish I had better words of comfort and encouragement to offer.

I hate that these soulless, heartless, and useless bureaucrats are screwing with you like this.

Edited by Stickler
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  • 2 weeks later...

Then I guess it's a matter of perspective. If you think you're always going to be the way you are, then it's likely you will be.

 

Fair enough.  For me I've found tempered optimism to be better than outright hope.  I feel the odds are against me, and frankly from an options standpoint, they are.  When you get to where I am in med trials, you're medically screwed in the current environment.  I've actually had a asshole pdoc tell me as such, say I can never be helped - and the best I can hope for is the mental fortitude not to just off myself.  (That probably bordered on malpractice actually.. thou on one level I admire the honesty - even if he was an idiot.)  That doesn't mean that will always be the case though.  For me, blind hope has always lead to crushing defeat.  That kind of loss is really hard.  Considering the legitimate odds, it's better for me, personally, to have a view of skepticism combined with an unwillingness to admit defeat and stop.

 

Ultimately, if something is going to work, it doesn't matter if I think it will or not.  It just will.  Just as you can't force yourself mentally out of depression, and you can't mentally force meds to work.  Even if you could mange that kind of placebo effect, it wouldn't last.  Just as when something is legitimately effective, you can't mentally force it not to be.  As long as I continue to try and fight for that against the odds, that's really all I can ask of myself.

 

If a med requires hope to work, it's simply not real.  Granted it can expand an effect... but it can't create one.  As long as you put in the effort, anticipation isn't a requirement.

 

Life has taught me that pretending things are better than they are may make you happy, but it also means you stop trying for real happiness.  You settle.  And that goes against who I am. You can't fix something that you choose not to see.  I have an ideal for myself that simply refuse to give up on, and without seeing the discrepancy, I'll never get there.

 

(That doesn't necessarily have any relevance towards you.  It's something I've witnessed personally.)

 

 

@ Cet:

On good days, I think it's worth it, on bad days I don't.

 

I wish I had better words of comfort and encouragement to offer.

I hate that these soulless, heartless, and useless bureaucrats are screwing with you like this.

 

Thank you.

 

A large part of me believes the worth is in the future.  I keep going because I'm stubborn.  It's only worth it if I end up looking back on my life at old age and feel better for having lived it.  It's quite possible I'll kick myself for not stopping while I was ahead... but that's not something you can really know now.

 

Perhaps the only comfort is that I'm aware I could quite possibly be an idiot, and that's my choice.

 

Willful stupidity is far better than accidental in my book.  Worth and regret is in the future; choice is now - and you can't reliably predict what any choice will hold.

 

I tend to frame it as; did I make the most correct decision I could based upon the available information?  If I did, I have no regrets on making the decision- even if I change my mind later.  But then again, my mental processes are rather quirky.

 

 

I really wish I could just focus on trying to get better and doing the right things rather than thinking about how any advances will be perceived and come back to hurt me.  I kind of wish they'd just use a lie detector.  "Can you work?"  "Will trying to work hurt you?"

 

The truth is, regardless of what they decide - I can't work.  Trying to work when I couldn't directly led to my sole suicide attempt.  I refuse to do that to myself again.  Ever.  I was pig-headed and refused to stop.  I never actually did.  I was finally fired - I went kicking and screaming.  They were right to fire me.

 

If I get to the point where I can work again without hurting myself - great!  I actually really liked working.  Some of the best things in my life at that time came from that.  But I know the difference now.

 

I'm not sure that I can live without the insurance, MI treatment, and the therefore the hope of ever getting better... but I know I can't survive trying to work to sustain myself as I am now.

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