Good thread, Aussie .

I also work each day. By the grace of whatever, however, I don't have to awaken at the wee hours that you and others must. I was by attrition or a fluke - and a sucky one - in my health that I've been self-employed since college. Thank goodness for that! I know how fortunate that I am in having what my docs have told me is quality coverage in my insurance.

Basically, I work freelance - computer forensics or digital evidence, and I am on-call 24:7. One of the companies that contracts work pretty much absorbs the chunk of cost for my comprehensive medical and set me up with a nice package and also backs when insurance gets all twitchy over a couple medications that not a single one of my docs wants changed. I've never encountered similarly before.

It was my health that dictated I really couldn't work by hours most do work by. My body can't hold up and that played a major role in determining what type of work I wanted to do.

I started out in publishing, but, demand (or other folks asking for this and that) helped me decide to further what my knowledge-base could/should encompass.

In the days pre-dx, I'd exhaust myself and I also did so for several months post-dx. But... after working so many years throughout holidays and other celebrations, I finally said: Nuff with this stuff.

I thought of it as setting more healthful boundaries.

I now work hours that I don't have set an alarm clock, and I don't even own one anymore . Too, I do a lot of gratis or pro bono work, and I feel content with that.

I guess it's all about striking a balance.

Right, now, though, with also prepping to set myself up in a new field, I am working even more hours, but... I anticipate the self-satisfaction factor will be a level in the future.

BTW: I am "disabled," but have not sought SSD. Admittedly, I have got a chunk invested in stocks but that is all so fickle.

My dream? To own a working fruit farm in Harmony, CA. When I saw it, my best friend was taking me to the coastal area, near where she lives in CA. I spotted the town and it had a population of 18 (June 2006). But, geeze, it was so pretty and ... maybe, the area, and life, is what one makes of it. I dunno. Maybe I think too big at times.

I work everyday as an elementary school principal. My days are long beginning at 6:30 and often lasting until 9 or 10 at night. I like what I do and my pain is pretty much under control;. I too wear ugly shoes and I don't move fast but i get the job done.

Dorothy

PS I really missed this board...I am happy I found the new one. I kept tabs on the old one but I didn't know anyone when it came back uo.

Hello everyone,

I am Terri. I just found your site today. I missed work yesterday. I've just been diagnosed in Sept. of 06. I've had symptoms for two years but it just got consistent in June of 06. I didn't have insurance until August.

Now that it is consistent it is relentless! it was just the balls of my feet, then my toes, then my whole feet, then up my calves, now my neck and shoulders, just last week it entered my hands. I'm really scared!

I've started using a cane because I've fallen a few times already due to the numbness in my feet. The pain is incredible, and my neurologist has me on 150 mg of (can't remember) (I don't have it with me and memory is bad today) I spent all day yesterday in bed.

If I'm not at work, I'm in bed. I don't cook, I don't clean, I don't shop, I don't go out for any reason. When I come home on Friday evening from work, my car does not move until Monday morning when I leave for work. Luckily my kids are in their early 20's and can take care of themselves.

Usually by Thursday afternoon I'm out of energy.

I work for the insurance, but I don't know how much longer I can make it.
I'm 46 now. I'm not married, and my parents are both passed away. No siblings that are capable of supporting me, and my kids are both living off me right now. Hmmmmmmmm

Terri

HI Aussie, dobbieray here also from Aus. Like your description of bodywide PN. I too have this although I was told be my latest neuro that I do not have PN - despite the symptoms and the nerve tests showing deterioration. He said no PN but wouldnt say anymore. He doesnt dispute it is neuropathy but says NO to PN..

I only work part time away from home 3 days per week and the others are spent looking after my 2yrs old active boy and trying to establish my own business from home office as well as trying to di stuff for husbands business.

I couldnt work full time, havent been able to for a few years now. Even if I have to work 3 days consecutivley, I am stuffed afterwards. Like Mrs D I am stoic and 'soldier on' I dont like to show my pain levels or how it affects me. As I work in an office alongside my supervisor, that can be hard, especially when the pain makes you jump out of your seat or wince in pain. My supervisor has witnessed this several times and finally asked me what was wrong, and I explained short and simple.

My neuropathy also affects my bowels and blood pressure, so some days I am constantly running to the toilet and sometimes I can go from being normal to really 'spaced out' when my BP drops suddenly.

UNfotunately I cant take many of the drugs prescribed for our condition as they produce very nasty unwanted side effects ranging from complete urinary retention to absolute mania, sleeplessness and restlessness and extrem euphoria, either that or my mind goes to mush.

In my life, going to work is painful, but it is less painful than looking after my very active son, who although only 2 is actually the size and strength of a 5-6yr old boy, but he doesnt have the understanding that goes with his size, and he is like any 2 yrs old - play is rough and tumble and life is full of "me,me,me". He doesnt understand that mummy cant do all these things with him and that he must be gentle. He does try but he forgets so quickly. So work is a 'haven' for me although tough.

Bless you

Dobbieray

For all new members.

i am a teacher and i can hardly take it anymore i am like the perso who said:
If I'm not at work, I'm in bed. I don't cook, I don't clean, I don't shop, I don't go out for any reason. When I come home on Friday evening from work, my car does not move until Monday morning when I leave for work.
i have to work for my insurance and house.
l look fine, but my pain in my legs is at a 7 or 8 most of the day when i try to walk even to the bathroom.
i need a wheelchair but i will not get one yet plus i cannot afford the can to get it to work.
i wish i had some control of my pain. i have idiopathic PN so no one has been able to treat it yet.
i think working is great if you can get your pain down to a 4 or 5 then you are distracted.
my pain used to be like that and even though it was challenging, i had grace and pride, but when it goes up so high like mine does now i just want to lie down on the floor and die.
i often wonder what the sense if of going on.
today my husband took me in the push wheelchair (they are cheap) to look for a new purse. can you imagine?
didnt find one of course.
only we know how tired we are. many will wonder how we can even go to work, but the street is very cold at night and i would make a really ugly bag lady.
pray for a cure soon.
steff

Steff - have you tried the Duragesic Patch or it's generic form - Fentanyl Transdermal System???
I've had sensory painful PN for over 20 years. A little over 5 years ago I started the Duragesic Patch and my life literally changed. My 7 to 9.5 pain went to a 2 to 4 level in just a few days. I am now 75 years old and no longer work but feel sure I could if I wanted/needed to.
These patches contain the narcotic, Fentanyl, but I have had NO side effects other than constipation. No "highs" or zonked out feelings. My hands are steady, eyes are clear, and I have full control over all my faculties. I drive my car without difficulty. I have always tolerated medicines well and if you do too then this might really help you. Ask your doc to let you start on the 50 strength patch and then titrate it until you obtain good relief. Shouldn't take but a few weeks to find out...be sure and give your body enough to time to adjust - it almost always does if given sufficient time. I am now using 125 strength and changing the patches every 2 days. If you haven't tried this give it a shot. The biggest problem might be in finding a doctor that will prescribe it for you as far to many are unwilling to work with patients in chronic pain.
Good luck.

I somehow managed to tough it out and work the first eight years I was sick. It was absolute hell, and the only reason I got away with it so long is that my husband was able to drive me there and back. By the time I had to stop, I was constantly falling asleep at my desk, making major errors that I would have to fix before they were discovered, making unscheduled potty breaks as often as once an hour, etc.

My primary rheumatologist told me in 2004 that I should go on disability. By 2005, when I had to go on sick leave for a lymph node biopsy, most of my eight doctors were in agreement with the rheumy. I took what I thought was going to be a five-month leave of absence to get my health issues in order, but I never recovered enough to return.

How I wish I could be gainfully employed! My poor husband has to slave away at a job he hates because he needs to make a certain dollar amount for us to keep a roof over our heads. When I told him I wished I could trade with him (we were in the same line of work), he considered it for a moment and then said, "Wait, does that mean I'd have to be sick then? No thanks!"

I do admire those of you who've been able to suck it up and keep working. Because of being on disability, I could no longer afford to live in Denver and had to move to Sioux Falls where the cost of living is about half. I don't fit in at all here and have dreadfully substandard insurance and doctors.

But we do the best we can with what we have, right? I am able to get out of bed most days even when I can't leave the house.

fanfaire

exhaustion and fatigue are reall issues for so many of us. Sometimes I am so tired I think I'm going to collapse on the ground. I have been known to hide under my desk and contemplate getting back up.

May I make a small recommendation to those with fatigue. Dandelion tea. cleans liver and what a quick lift. I live on dandelion tea. I also am holding on some days by the skin on my teeth. I need this job really bad because we would loose or house right quick without my income. I'd loose my car, and god only knows what would happen to us. So I pray for streghth every day from God to keep me able to work. That is my only prayer. Not a cure,not the lottery, just let me be able to work.

hey fanfare-
i hope you have some joy anyway-i rarely do. it sounds like you have a good husband-that is worth its weight in gold-in that i am lacking

hey dan-
had no trouble getting the fentynal patch 25. here is the prob. it says may stop breathing and dont touch the patch with your magic finger, and dont look at the patch if you have just had cherries and dont put the patch on unless you can do ten jumping jacks and dont throw it away unless you live near a toxic dump-all kidding aside, it scared the hell out of me and when i called the doc back and asked how it might affect me, she never returned my call-so i am going to look into it again-but i do not react well to drugs. i hate them i felt the best in my life when i took nothing, but those days are over for sure.
it seems to me men do better on the patch
but if it would help with pain so i could work better -then i will see not right away but maybe over thanksgiving
the prob is that my husband could care less if i drop dead-in fact if i passed out on the floor with the patch on he would ignore me- so i have no one to help me with the beginnning of the test
as long as i go to work and make the money he could care less how much pain i am in-
sorry to cry baby and change subject
steff