[bobmar2]

I am new to this forum, though I have had Idiopathic PN for about 6 years. I read the earlier post regarding employment, but my question differs slightly and I did not want to confound the earlier thread. I have been working for many years in a specialized field, in which my college education focused on. In the past year my symptoms got markedly worse and my neuro strongly advised perm disability. But I continued on for 10 months. After 3 hospitalizations, my employer is pushing me out the door (and some of their reasoning is valid).

I find myself at a crossroad, as I cannot decide whether I should start at a whole new profession, or accept my increasingly disabling symptoms and go on disability.

I would be very open to hearing from others who were once in my situation, and learn how you decided what to do. Thank you
bob

[Susanne C.]

I have only been a sahm so no advice, but welcome to the forum. I have had to move from super mom to a smaller, supporting role, needing more and help rather than being the one to do everything. We have that frustration in common.

This is a great forum, hopefully some people more qualified than me will chime in!

[bobmar2]

Originally Posted by Susanne C.

I have only been a sahm so no advice, but welcome to the forum. I have had to move from super mom to a smaller, supporting role, needing more and help rather than being the one to do everything. We have that frustration in common.

This is a great forum, hopefully some people more qualified than me will chime in!

Thank you Susanne, I am going back and forth in my head about this. You are correct about frustration. The work that I have been doing was all about helping others, and now that is drifting away.

[Brue]

Originally Posted by bobmar2

I am new to this forum, though I have had Idiopathic PN for about 6 years. I read the earlier post regarding employment, but my question differs slightly and I did not want to confound the earlier thread. I have been working for many years in a specialized field, in which my college education focused on. In the past year my symptoms got markedly worse and my neuro strongly advised perm disability. But I continued on for 10 months. After 3 hospitalizations, my employer is pushing me out the door (and some of their reasoning is valid).

I find myself at a crossroad, as I cannot decide whether I should start at a whole new profession, or accept my increasingly disabling symptoms and go on disability.

I would be very open to hearing from others who were once in my situation, and learn how you decided what to do. Thank you
bob

I just got laid off a couple of weeks ago. I am going to have to suck it up big time to be able to make a commute and hold a job down. And I have a girlfriend that has a six-figure job and is complaining about the length of time it takes to buy a new house. I have looked into disability, and from what I understand, and I may be wrong, it takes at least a year, even two before a determination is made and benefits paid. I'm not sure how much you can get off of a disability claim. I am afraid I will have to eat dog food if this PN gets bad enough. And I don't think I'm being dramatic. Bruce

[hopeful]

Originally Posted by bobmar2

I am new to this forum, though I have had Idiopathic PN for about 6 years. I read the earlier post regarding employment, but my question differs slightly and I did not want to confound the earlier thread. I have been working for many years in a specialized field, in which my college education focused on. In the past year my symptoms got markedly worse and my neuro strongly advised perm disability. But I continued on for 10 months. After 3 hospitalizations, my employer is pushing me out the door (and some of their reasoning is valid).

I find myself at a crossroad, as I cannot decide whether I should start at a whole new profession, or accept my increasingly disabling symptoms and go on disability.

I would be very open to hearing from others who were once in my situation, and learn how you decided what to do. Thank you
bob

Hi Welcome to neurotalk. I can actually speak to this. I have had PN for almost 5 years and just stopped working. I also had a profession I went to school for and did not want to give that up. My doctor kept telling me I would eventually have to and he was right.

Once I made the decision, I went to human resources and discussed my options. I was lucky enough to have some. I had disability insurance. My work in allowing me to keep my health insurance for the time being at the rate I was paying. My husband is self employed and does not have insurance I could go on. After I took the first step it all happened very quickly!

Now here is the hard part. I loved my job. I have been out of work since November. I cried alot at first. Then felt depressed, like this disease had beaten me. Then just recently decided Ok this isn't too bad. I can do this! I spend alot of time taking care of myself. I have begun to cook again and have started to do some of the household chores again. I read. I do research on what is best for me to do to help make this disease easy to live with. I have time for my family!

Do you have disability insurance? Do you and your family have health insurance from you? If you are honest with yourself (which was hard for me to do) are you in too much pain to work? Do you sleep at night. That was one of my biggest problems I would finally fall asleep at 3 and get up at 6 for work.

I make myself look at this as a decision for the time being. I'm on disabilty for now. I feel blessed that I have this. I also hope that some wonderful treatment comes along that gives me back my life. The most important thing for me right now is I know if that treatment doesn't come along I will be all right!

I don't know what is right for you. I don't know your situation but sometimes we just have to take that leap of faith. You might find out it is ok for you.

[hopeful]

Originally Posted by Brue

I just got laid off a couple of weeks ago. I am going to have to suck it up big time to be able to make a commute and hold a job down. And I have a girlfriend that has a six-figure job and is complaining about the length of time it takes to buy a new house. I have looked into disability, and from what I understand, and I may be wrong, it takes at least a year, even two before a determination is made and benefits paid. I'm not sure how much you can get off of a disability claim. I am afraid I will have to eat dog food if this PN gets bad enough. And I don't think I'm being dramatic. Bruce

Hi Bruce, I hear all the time that it takes a few years to get disability but my brother in law got it on the first try and he was only out of work for a few months. He is a diabetic with neuropathy. He paid someone to help him complete the forms that is familiar with the disability process. They sent it in and he got it. I was amazed. He also got medical assistance. Maybe there is someone in your area who could help you. And in our condition we're intitled to be a litlle dramatic every now and then

[bobmar2]

Originally Posted by Brue

I just got laid off a couple of weeks ago. I am going to have to suck it up big time to be able to make a commute and hold a job down. And I have a girlfriend that has a six-figure job and is complaining about the length of time it takes to buy a new house. I have looked into disability, and from what I understand, and I may be wrong, it takes at least a year, even two before a determination is made and benefits paid. I'm not sure how much you can get off of a disability claim. I am afraid I will have to eat dog food if this PN gets bad enough. And I don't think I'm being dramatic. Bruce

Thank you very much for your insight.

Bob

[bobmar2]

Originally Posted by hopeful

Hi Welcome to neurotalk. I can actually speak to this. I have had PN for almost 5 years and just stopped working. I also had a profession I went to school for and did not want to give that up. My doctor kept telling me I would eventually have to and he was right.

Once I made the decision, I went to human resources and discussed my options. I was lucky enough to have some. I had disability insurance. My work in allowing me to keep my health insurance for the time being at the rate I was paying. My husband is self employed and does not have insurance I could go on. After I took the first step it all happened very quickly!

Now here is the hard part. I loved my job. I have been out of work since November. I cried alot at first. Then felt depressed, like this disease had beaten me. Then just recently decided Ok this isn't too bad. I can do this! I spend alot of time taking care of myself. I have begun to cook again and have started to do some of the household chores again. I read. I do research on what is best for me to do to help make this disease easy to live with. I have time for my family!

Do you have disability insurance? Do you and your family have health insurance from you? If you are honest with yourself (which was hard for me to do) are you in too much pain to work? Do you sleep at night. That was one of my biggest problems I would finally fall asleep at 3 and get up at 6 for work.

I make myself look at this as a decision for the time being. I'm on disabilty for now. I feel blessed that I have this. I also hope that some wonderful treatment comes along that gives me back my life. The most important thing for me right now is I know if that treatment doesn't come along I will be all right!

I don't know what is right for you. I don't know your situation but sometimes we just have to take that leap of faith. You might find out it is ok for you.

Good morning Hopeful,

Thank you for your email. Being single, without family nearby or supportive, I had been feeling very alone in this turn of events with work.

I had been paying for disability insurance thru work, but if i get terminated they will not pay out. It is only if the employer plans to have me get back to work at some time. In a sense it is a catch 22.

But your message truly was "Hopeful" since you are handling your situation in a optimistic way. That is good for me to see.

Bob

[chaos]

How does disability insurance work, and can one get it once their PN has started? I'm guessing I need to get it now, on my own. And if one does go on SSDI, how is medical insurance covered?

[bobmar2]

Originally Posted by chaos

How does disability insurance work, and can one get it once their PN has started? I'm guessing I need to get it now, on my own. And if one does go on SSDI, how is medical insurance covered?

Getting SSDI, it is best if you can to utilize an attorney who specializes in SSDI. This will help ensure that you fill out your application correctly. Usually they get paid from your first payment.