[evandtwins]

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.

[Stacy2012]

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.

[skutters]

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.

[Lewie]

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.

[St George 2013]

Your post really made me start thinking.....about me and my husband...he's 57 and I'm 51.

He still works and I'm on SSDI. My husband, we call him Bubba, hurt his back at work in his 30's. He had numerous epiderals throughout 14 years and finally had surgery. The dr told him at the time that if he went back to do the same job he was going to damage other discs, either above or below where he operated (lower back). Well he went back to the same job (not a choice per him) and of course almost immediately hurt 2 other discs. He was not going through the epiderals or surgery again so he just took vicodin everyday to get through. And today he is still taking it just to get through. Though the years he's developed COPD and large fiber neuropathy. Through the Grace of God he was given a manager's job over maintenance about 10 years ago....that is the only reason he's still able to drag himself to work everyday. Many dr's thru the years told him to stop working and apply for SSDI. He never did. Keeps saying he'll go out on company disability when the dr's put him in the hospital which will probably be before the end of the year if he doesn't get some medical help. He'll see his dr's for awhile and then stop going for months and months. He's in the months and months place now.

That's his terrible and I think tragic story.

I'm so sorry for where you are at in your life now...how is your wife doing ? Is she in remission ?

I was laid off from my job of 26 years in Sept 2012, hysterectomy in Oct 2012 and dx's with a rare uterine cancer thru the path report. Had 6 rounds of chemo that ended in Mar of last year and then exactly a month later this monster hit me with everything he had. I was dx's with severe small fiber neuro via skin biopsy. No A and C Fibers left in my feet. Filed for SSDI last May and was approved in Jan of this year. I was given 7 1/2 months of severance when I was laid off and even with the cancer dx I was excited about looking for a new job. Maybe one outside my field (acct'g and claims). That never happened for me. Makes me sad to think about it. So...I did not have to 'try' and work. Which is a Blessing because they would have to haul me out in an ambulance by lunch time or before

I was able to draw unemployment benefits even though I had applied for SSDI. Not all states allow this but GA does. Even though I was only drawing approx. $270 a week it did get us through. I also took out most of my 401K and paid my house off...I know they say not to do that but I'm so glad I did. I made a little more than my husband and when I was laid off that took away over 50% of our income.

I will keep you and your family in my thoughts and prayers.

Sorry for being so long winded...that's me ! Not sure if any of this will help you but wanted to share our stories with you.

Debi from Georgia

[MikeK]

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

[keweenaw]

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

[AussieDebbie]

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.

[Billylyne5]

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

[Dr. Smith]

Originally Posted by evandtwins

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.

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

Doc