How Many PN'ers Work?
 

I have had PN since 1/294 (just "celebrated" my 20 years this year!) and it has been markedly worse over the past two years or so.

The question I have always wondered about is employment. I feel like I am caught between two worlds - in pain where some days seem like pure hell at work (stress makes my PN far worse), yet not in a condition where SSN would likely ever approve my claim.

I got this lovely disease at the tender age of 24, and I have three little angels that I fret over not being able to provide for.

If SSN is so hard to get approved for, how are my fellow PN'ers making ends meet (if not working)?

Please forgive me if I am being too personal, but I truly am clueless after all these years about this subject. The days are so very bad of late that I genuinely don't know what to do. My wife is recovering from a breast cancer diagnosis in late 2012, and the last thing I want to do is ask her to now go out and be the primary breadwinner, but after 20 years this PN is starting to get the upper hand on me and making my life nothing short of miserable. Like I am prone to saying, it does not take vacations or weekends off. It is ever present.

I truly wish each of you the best in your journey with this. I pray that our scientists come up with that true breakthrough drug in the next five years for all our sakes.

I wonder how they work too.

I quit working in May of last year. I am thankful I am able to be off without hardship.

My heartfelt prayers for you and your family.

Well I am new to the game and still waiting to see the neurologist for diagnosis. I work full time but have had 1 month off work this year with the sudden onset and medication.
I am in the lucky position where I can work from home (or anywhere I can get internet connections from a laptop) but then I can be called upon at any time to work if my staff can't resolve the issue.

On the work anywhere the best I ever did was handle calls from around a camp fire one night sitting on a beach, turned out I was 1km from the caller :).
Worst was from a casualty bed after a suspected heart attack, turned out it was stress. Nurses were not impressed until they worked out I was fixing a health database for a different hospital who needed the data asap.

Not being able to work and provide for my wife and kids is my biggest fear. If I can't work I feel I am useless to them. I worked very hard for 15 years to get out of the situation and place we were in and finally have it made in a nice house in a really nice area and could loose it all really quick due to whatever is going on. The pain I have been able to manage but not being able to sleep and constant tachycardia is currently threatening my work situation.

Good morning evandtwins :)
 

Yes I still work
 

Luckily I work in an office, in front of a computer. I try to get up every hour or so to walk a little so not to get stiff. Worse case scenerio I have the ability to work from home, but our company frowns on it for extended periods. Thankfully my Dr. approved a handicap placard for my car so on my "other days" I can park closer to the door at work.

I have had this for 3+ years and hopefully I only have to work for another 4 years or so until I reach retirement age.

Good Luck

Hi! Yes, I still work. Have had PN for 4 years now. I am a guide at a museum, so some of my day is standing, some sitting, and a lot walking. Some days are more difficult then others - on those days try maximize time off my feet. But, bottom line is, as I have learned from others here, you gotta do what you gotta do. It is a struggle, but I would rather struggle than surrender.
May God bless you & give you strength.
Keweenaw

I work part time as a chess teacher. Four days per week I visit schools throughout the day and conduct a class for an hour. Although I'm on my feet for the full hour, it's not difficult because the work itself keeps my mind too busy to remember I'm hurting. Also I have a few hours between each class to rest.

I imagine keeping this up for a year or two more, if the pain increases at its current rate. Then, I guess private tuition, where my students come to me, may be an option.

This monster has taken away my own ability to play chess on a competitive level, I used to be quite good. Teaching others keeps me surrounded in the game I once enjoyed and still love so much.

I lucky. Yes, I work, but so far with Me vs PN, I'm winning.

I work ,well I have been off sick and then on a slow return since last September while waiting for a diagnosis, which I just had SFN. I have to do lots of driving for my job and computer work so both cause me problems as both my feet hands and arms are painful and get worse the more I do. I should do 30 hours a week at work, I am currently doing 22 but half of those from home which work are not too happy with plus my gp has said no home visits.
I am just looking at changing my car for an automatic in the hope that will ease the driving a bit, I am also going to the pain clinic next month so I hope to get some improvement on pain management. Long term I am very concerned about how work will go, but I guess I will just have to wait and see how things develop. There is no way I could get any disability payments as the new rules mean you have to be unable to walk 20m unaided. Good job my hubby has a good job, but we still need my money too

If you're not making use of it already, Family Medical Leave Act (FMLA).

Doc

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.