Boy what a question! I try not to let my mind go there. Its hard to work these days (I'm fortunate that I'm in the type of business where I've planted seeds for 20 years and reaping them comes rather easy for me). I still can only last 4-5 hours before I have to bail out and go home for my ice bath. I sit on ice packs behind my thighs after about the first hour at my desk.

If I had to go get another job for some reason - i couldn't. I can't wear shoes and that is a BIG problem in the working world.

I always assumed I couldn't get SSI, but I really don't know anything about the rules and requirements.

This post reminds me how mad I get when I hear politicians complain about the 'takers'. Hell, give me a day without pain and I'll outwork every lazy, paid-off politician in the country.

Rant completed.

AFAIK, it depends on whether or not you've paid into the system, and for how long (credits similar to SS benefits). You may still be eligible for some other program, but that may also be income dependent, etc.

Doc

work or not
 

I don't work... I don't know how some of you do it when read some of these posts. I am in my early 60's and glad this condition hit me later in life. (I hope one day I won't need chemo to make this worse like Deb had -I am at risk for breast cancer.) My husband has about 10 yrs left to retire. He is diabetic. I sure hope this does not affect him one day. He takes things more in stride than I do and adjust to meds much easier too.

I am the bread winner for my family and really struggling to work. I took a leave through the SFN diagnosis and while trying different pain mgt options. I received a pain pump implant in January, which does help me manage the pain much better while getting off all of the other meds. But I am working from home and trying not to let the stress kill me. I find I can't cope with stress as well as used to, and I can't buckle down and produce work like a I used to. The result is relying more on others to get it done right, and trying to stay calm and healthy while I trust them to do it. I feel trapped though, hard to extricate myself from clients who are relying on me, and very few replacements for what I do. And to extricate my self from the trickiest projects, is basically saying goodbye to my career. This stress makes my pain go crazy and my autonomic nerves flare too. How much is enough? Where will this disease rear it's head next? Can I do it? Should I do it?

How Many PN'ers Work?
 

This question is really difficult for me :(
I have always been an excellent provider for my family.
I have been working since this disease started showing constant symptoms 2 years ago. I work a desk job 40 hour week, and am on call 24X7 every 6 weeks for 2 weeks straight.
Every month we are required to work a Saturday night for about 6 hours.
Between work and taking my child to soccer practice/games and weekend visits, doctor's visits, IVIg, grocery store, cooking, etc. it is extremely difficult to handle. I am certainly thankful I am able to do these things right now, but at what point does the core reactor melt down? I am literally dragging myself out of bed some days.
I always thrived on stress, but now it is my worse enemy and I believe the grueling schedule will soon be too much for me.
Ever heard the saying "My job is killing me", this may very well be the case for me. I am not sure how I do it. I am recently divorced and now feel the pressure to continue to try to make this all work for the sake of my child.
Ever seen the I love Lucy episode about the candy factory? This is how I feel now.
http://www.youtube.com/watch?v=HnbNcQlzV-4

Thank you all for your replies
 

My heartfelt thanks to everyone who has replied. I now fully appreciate that I am not alone in my concerns about work and providing. My little dudes are 9 and a pair of 7 y.o. twins and they just know that "daddy's feet hurt" (they know nothing about it being neuropathy). In fact, one day one of my sons came home from school with an assignment where they asked "if you could have one thing", and his one thing he wished he could do was make daddy's foot pain go away.

Like some of you, there are days at the end of the day where I wonder how I can make it another day. The pain is so unbearable by the afternoon and my feet hurt so badly I can't stand on them any longer and the burning is up over the knees. I kick the shoes off because it feels like my feet are aflame.

How can I work like this another 15 years and get my kids through college where they are able to provide for themselves? I fear for my financial future in some respects as much as the pain. I am working hard to overcome my sometimes "stinking thinking", but I sometimes feel like I am waiting for the proverbial "other shoe to drop", where I one day wake up and just announce to my wife that I just can't do this anymore and that I am going to work that day or any other day. That the tremendous work demands in my condition are simply too much.

All of you out there know unlike any other that we are not faking or understating the degree of our pain and suffering, you inspire me and I can relate to you unlike I can to anyone else. I thank you sincerely for sharing your experiences.