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Old 08-19-2010, 08:58 AM
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cyclelops cyclelops is offline
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Join Date: May 2007
Posts: 2,049
15 yr Member
cyclelops cyclelops is offline
Magnate
cyclelops's Avatar
 
Join Date: May 2007
Posts: 2,049
15 yr Member
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I have pretty bad PN and some autoimmune junk going on.

I had to give up work. I am badly affected with FINE motor skills. I can't open a package, a jar, nothing. I can't get in IVs and stuff. I can't write very well with pencil or pen...I CAN type.

I do have a small organic farm...very small, and I can manage this, but, it is hard and I have a lot of pain and have to arrange my work so it gets done. Hubby helps me.

I can travel, but have to be careful to pace. I won't drive far alone, and only drive into big cities in an absolute emergency.

My legs are numb below the knee, but the numbness is more superficial....I can use them, I just have to be careful where I plant my feet. I use trekking poles when outside walking....or, lean on my grandson's stroller.

My hands are nasty and I am having surgery to try to fix the arthritis I also have. I have gotten to the end of my rope with disability and pain with the hands....so I am trying this fix with full knowledge it could backfire and get worse....

I have autonomic neuropathy and that is the MOST disabling part. If you can get away with not having the autonomic part, and can adapt to pain, you should do OK.

That said, I don't rule out being in a wheelchair at some time and I am fighting that with all I have. Once that happens your autonomic system functions very poorly. I live in a home with lots of stairs and that has probably been therapeutic...it forces me to walk up and down. I still even OPT to hang out laundry instead of use the dryer!

Try to stay on your feet. Try to stay active. Try to stay inspired. Try not to lose your sense of humor, you are going to need it. Try not to get to entangled with lots of meds. Try to eat well, even if it is baby food...(it's not all that bad.) Try to maintain social ties.

We all think about the worst case scenario....my advice....DON'T. Chances are, you will have suffering, some disability, but, you will prevail.
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