Sense of responsibility is going to kill me

Though this post could be put in multiple categories, I'm placing it here because the real issue, as I see it, is a mental health issue rather than a disability issue. I have been fighting for social security disability for five years now. Recently, on the advice of my attorney, I applied for services at the Department of Vocational Rehabilitation. His reasoning was that if DVR is unable to find me employable, then we have a governmental agency saying that I'm basically unemployable due to a disability and that social security will not be able to ignore that.

I've gone and applied and was told that their funding is extremely limited at this point and if I qualify for services, I will be put on a waiting list unless they determine that I am in the most extreme category - which is all they have funding for at the moment. Well, I got a letter in the mail yesterday and they've determined that I am in the most extreme category of disabled and I have an appointment. Here's the issue:

I have a dissociative disorder. Severe childhood trauma/abuse caused me to find a way to ignore what was happening to my body and I became very, very good at it. i.e. I have had three heart attacks at work over the years and continued working until my shift was over in each case. In one instance, I not only finished my shift but actually came in the next day because we had a lot to do that week and I wanted to get my crew prepared to meet our requirements without me prior to going in to the hospital. I finished that shift too, had surgery the next day and was the first one at work the following day. Call it stupid if you wish, but it is who I am. I've made progress on this believe it or not, but I'm still over the top.

So I'm going to go to DVR and jump through their hoops. How do I know when to stop? I am capable of pushing myself to death - I know this about me. What I don't know is when is it appropriate to stop and say that I can't continue? I mean, in my head, if I'm not dead, I can keep going. If I am dead, well, I can probably keep going for another week or two before I figure it out. (Ok, was joking there)

I guess that's it. I'm in pain 24/7/365. My body wants to quit on me 24/7/365. If there's no pressure, no responsibilities that I have to do, then I find I often don't have the strength to make myself something to eat, or to take a shower, or the dishes, etc. But give me a job to do and expect me to get it done, and it'll get done. Do that and they very well may find me capable of working which will likely kill me. My judgment on this issue stinks - I could use a formula, something concrete to sink my teeth into. It's not ideal....developing judgment would be better, but I really don't have the time to learn that skill to a reasonable competency in the time I have left before my appointment.

Idea's? Suggestions? Thoughts?

I have no knowledge of how disability works, and you obviously are under no obligation to respond, but these are some of my thoughts after reading your post:

When DVR says you're in the "most extreme category," is this a good development or a bad one? Does this mean that they're willing to devote limited funds to vocationally rehabilitate you so that you can re-enter the workforce, that they're highly motivated to work with you (say, more than other candidates) to find a position in which you'll utilize a unique skill-set and possibly thrive? Why do you think they categorized you in this fashion? If they determine that they've found reasonable options for you (not necessarily what you find reasonable), and you decline these "opportunities," would they consider you uncooperative?

Setting aside your psychiatric diagnosis for the time being, would you qualify for disability on the basis of physical ailments alone? I mean, if you believe that no amount of re-training will make you safely employable, do you declare that up front?

Please, I'm grateful you responded and I'm the responding kind. Thanks for giving me an opportunity to.

Hmm, good/bad...? I don't know, suppose it depends on your perspective. I think it means that they are not holding their breath on getting me employed but are willing to give it the good ol college try.

Yes.

Because of a plethora of disabling conditions both physical and mental.

Absolutely.

Well, therein lies the problem. I should qualify for disability based solely on physical disabilities but I ran into a snag. I'm not sure if there's a short version but here's my best attempt at that:

I have a rare, auto-immune disease called myasthenia gravis (along with a host of other conditions that are, in most cases, secondary to the MG). MG is Latin for 'grave muscle weakness' and to put that into perspective, most people die from this because they get so weak that their pulmonary system doesn't have the strength to work and they stop breathing. Our bodies via our nerves produce acetylcholine (think 'muscle gas') and send it to our muscles. My body attacks and destroys the acetylcholine before it makes it to my muscles. A very little bit sneaks through. When I am sleeping, because I am using very little muscle to do so, the acetylcholine builds up and I wake up with as much as I'm going to have all day.

Now let's say I start walking. Eventually I run out of muscle gas in my legs. If I push on, let's say because I am in the middle of the street and a car is coming, my legs will steal muscle gas from any other muscle group in the body - and it does so indiscriminately. Today it is my back muscles and they get very weak and sore, tomorrow it is my pulmonary system and I stop breathing. So, the lesson is, don't push yourself.

There is one treatment available but it doesn't work for a small majority (60%). I fall into that category. My neurologist put me on the drug and tried to titrate me up to a therapeutic dose but I overdosed before I got there and ended up in the hospital. They discontinued it, put me on steroids for two weeks and tried again. Same result and so it was discontinued.

During my hearing for disability, the judge had my medical records from my neurologist who said, and I'm paraphrasing, 'we discontinued the medication because his myasthenia gravis was so well managed that he didn't need it any longer'. Clearly that was wrong. So, I was denied, went to my neurologists office and asked them to review and correct my medical records to reflect my condition accurately. Apparently, he is not to be questioned and I was fired as a patient. Incidentally, I have always had a good report with doctors, this was a unique interaction.

My primary care physician has since tried to get me referrals to other neurologists in the area but each of them, after reviewing my records, have decided that this is too rare and outside the scope of their expertise and I need to be referred to a specialist too far away for me to travel to. I have neither the strength or financial resources to get there. So..., I am unable to get a second opinion or even have the last one corrected. In my favor, as far as disability is concerned, I've had three more heart attacks since the last hearing in Sept. 2016 and they have found a couple of other physical issues that weren't taken into account. I don't know if that'll be sufficient though.

Well, no. I'm going to let them make that determination. However, that last heart attack I had at work...I started that morning, it was my first day on the job and came after the judge denied me for disability. It was a sedentary job, nothing physical about it.

I did DVR here in another state. I was working at the time but not easily and not very successfully. They provided some evaluations and recommendations for modifications that my employer declined. I changed employers and they provided some support that again the employer declined. At that point they brought me in and suggested I go on SSDI.

I was not ready for SSDI. Nobody who treated me thought so and I did not either. I could work, it was just hard. I pushed through I think 4 years more and then went on SSDI.

I was approved very rapidly and I'm pretty sure my failures with DVR and having the record saying I couldn't work reasonably from them helped a lot. Hopefully you'll have something similar. The trick is to keep emphasizing what extreme measures it took to work as you go through the application process so they know just a minor tweak won't fix your issues and if DVR offers you something that they know that you did what was recommended and it didn't work which will ultimately lead to them noting they couldn't help you. If it does work that's great but it sounds like you've given work quite a hard try.

There is paperwork that I remember as being similar to SSDI paperwork and a form for a provider to fill out. My therapist did mine. I don't know the extremity of my application but I did wait a while.

I hope some of this helps. It was a while ago and hard to remember some of it now.

Oh I can't imagine how difficult this is. Why can't a letter from your psychiatrist suffice? I really don't understand. Makes me a little mad that someone would have such difficulty which is so very wrong.

Please, if anyone else responds to this, do not think that because this has been moved to 'insurance and finances' that I am asking about insurances and finances because that information will not help me at all. This thread is not about DVR. It is not about SSDI. It is not about medicare. It is not about the stock market.

This thread is about how to not push myself to death when I lack the mental health necessary to do so.

Suggestion -- just go, and don't have any pre-set goal or agenda. Maybe there will be an amazing counselor who will "get" you. Maybe that will help, maybe not, could be an interesting experience either way.

And, maybe there will be no such person. But maybe you will meet somebody interesting among the other clients.

Or, maybe the whole thing will be a complete waste of time.

But until you get there, you can't know. I understand the wish/need to have a strategy, I tend to look for and do that kind of thing myself. And there don't appear to be any VR or mental health resources for helping (dissociative) people learn how to develop (social) judgment. Very much too bad, very much an oversight, IMO, very much nothing that I know (how) to do about that. Very frustrating.

But -- the social facts are, nevertheless, that as of right now you can't know what things will be like at the DVR. Things are in a superposition over there, as far as you can know at this point.

Can you come back and post here after the first day? You'll have more information then, so maybe more to work with in terms of strategy-making?

I should be able to but frankly, at this point, I've decided to go in there and push myself to do everything that is asked of me without complaint and hope that I have another heart attack while I'm there. Whether it kills me or not, my struggle will be over then. If I survive one, I'm probably guaranteed to be found disabled. If I don't, I won't need it.

Ugh. OK, I get that.

I came back and was going to edit my post. Suggestion -- go in and try to gather information, not necessarily try to communicate it from your end (and risk giving TMI, too much information).

But, yes, trying to do whatever is asked seems like a good strategy.

Good luck, and I hope that things work out better than expected. Please let us know?

Sincere thank you's...and I plan on letting you guys know. My appointment isn't for a few weeks though.

I feel your mental distress over all this. I can't believe how hard you push yourself, that is just uncalled for. Your story is compelling.

I wish I could tell you how to get control of that, but sadly, can't and I'm sorry to disappoint. Just know you sound like a superhero to me to have gone through all you have so far.

Hugs to you and best wishes. You are a good one, yagr! Hope the superhero syndrome dissipates and you realize you are HUMAN.

Oh my goodness! You know when you are trying to describe something, continue time after time feeling like you didn't get it quite right and then suddenly an epiphany and it resonates so strongly that you know it can't be said any better? Yeah, that.

So I work like a little kid spins in a circle faster and faster and then comes to a sudden stop and they fall down dizzy as all heck. That's me. As long as the job isn't done, I go faster and faster and then, when it's done - then I feel it. Sometimes I fall down, sometimes I don't, but I don't feel it till I stop.