PN? What's good about it?

Great lesson! We’d be fools not to exploit and savor the good days we have! I have to make sure I don’t overdo it on those days though. Many people just have no idea of our illness, our inability to control consistency. Most people don’t understand our careers either and what we need to perform. They think if your brain and mouth work and you can drive, then you should be able to work in an office all day (without hands to work on a computer, people to help you carry things between meetings and carry your bags when you must travel). But we can’t afford to exhaust ourselves with worry over people who can’t accept what they’re not capable of knowing about.

Hi Julbpat,
Recently, I applied for disability as I have severe diabetes and PN (feet, calves, thighs and hands). I have endured the pain and discomfort especially with PN for the last 4 years. I was involved in a court hearing with judge few months ago plus with their team and finally with my own lawyer. They have not yet approved disability but anxious to know the outcome.

I'm 55 and continue to work as I am required to pay bills, mortgage, etc... I have no retirement and/or savings. As I told judge it is an extremely painful experience working to support living situations. Lately, I have taken jobs to pay bills, groceries, etc.. BUT would be later terminated due to additional breaks, time off, etc... The work place is not really an option but I "must" no matter the medical circumstances until I hear word from SSI.

I am not sure IF they will approve but reading your note, I am trying to remain positive with the outcome.

In my opinion, please do not feel guilty nor regret your decision with SSI disability as we should NOT have to suffer to live and work with such pain and discomfort!!! I am glad your able to perform some duties at your very own time and convenience with not being told how, what, when regardless of your condition. Actually, employers do not care nor show compassion towards your mental and medical situations plus terminate even with ADA.

Thank you!

One of the things I find frustrating is when someone say “You look great!” Although I appreciate the compliment, they have no idea what struggles I’ve gone through to make that appearance. I’m so cautious and have to concentrate on every little movement I make.
This communication link is affirming and much appreciated! ❤️

@ray666 - Ray - since you posted this question, I have been asking myself....OK, what's good about having PN? This is a difficult one to answer and I have given it a lot of thought. For me, I guess it has made me realize that if you want to do something in life, go do it. Because you don't know one day from the next what little surprises await you around the curve in the road. So, for me, the positive side is that PN has made me think about things my wife and I want to do together and do it. Plan ahead now before you get broad sided by some other little surprise. In other words, this was an eye opener for me and my wife. And for me, it does have a positive effect. I also want to mention that if I didn't have PN, I would have never met so many great people who share their thoughts and suggestions on the Connect. I thank everyone who contribute to this ... I have learned a lot from others and our terrific mentors! Thank you! Ed

Oh yes, the part about being able to work. There is someone in my life who knows my finances are precarious, and she sometimes mentions great ideas she has about jobs I could apply for. I am able to get up, shower, dress, put on some make-up most days - so it makes sense to her that I can get a part time job in a little shop, etc.. She does not know how many days my plans fall apart, or how I creep around in the mornings, waiting for my painful limbs to loosen up. The days I carefully calculate how many consecutive errands or appointments I have. The days my shower happens at 4 pm or, not at all. The nap breaks. Believe me, if I could be working, especially in my chosen field, I would! But I don't think many employers would accept my schedule. Computer work from home? About an hour of day of typing is about all my hands can take. And I make frequent stops to stretch and rub my hands. My neck and shoulders hurt, just from sitting to check email and balance my check-book. A computer job would be tortuous.

As you know, there are actually people who think being on disability is like hitting the lottery! Now, who wants a sudden 75% cut in pay? But they just don't know, and I pray they never have to find out. Those same people think that you're richer when you retire too, as if you're collecting a Social Security "bonus" on top your normal salary when you retire. (They'll learn that math soon enough if they haven't already). But in the spirit of keeping how this has helped us, since we have to overcome & ignore those who don't understand, we have proven to be fighters determined to stay as active as possible and work for the best quality of life we can make for ourselves!