Those of you who are keeping up with where I am with everything know that I'm off work for another 3 weeks and I have to have a couple of surgeries.
I am positive that fixing my knees is going to greatly improve my situation. But after all the other things I've discussed, I wonder whether or not I will be able to return to work at the end of all this. I have such a split personality on this subject. I want to work. But then, every day, I find I can do less and less. Part of it is fatigue and part of it is function. The shoulder pain and the neck pain are constants as is the fatigue.
I want to work something out.
Thoughts? Things I should consider?
Deanna, It's so hard when you want to work but your body isn't letting you.
It's a hard thing to decide when to quit working. In my case, my job was very important to me and a big part of my identity. I suggest too that you wait until after your surgeries to decide. There were two time when I could have/should have quit after serious illnesses but went back to work. I think now I really should have quit after the second one, instead I waited until my husband was end-stage. I regret that now. Not just because of my husband, but also because I wasn't as good at my job after that second illlness.
You do have to speak straight to yourself - can you really do the job anymore? I got approved for SSDI the first time I applied, but most don't, and even if you do, it takes 6 months before y ou get a check. Can you survive that?
Good luck and keep us posted...
Hi Deanna, I have gone through this same situation, as many RA sufferers have. I had a successful career as a Director of 13 medical practices. I loved my job. It was stressful, but I had worked hard to get where I was. But unfortunately, RA does not always bring you down when it's convenient. The fatigue was the worse for me. But then I developed fibromyalgia. That hit me like a train. My dr says it is not unusual to get fibro when you have ra. Anyway, after 27 years I made the decision to leave. I had nothing left for my family. I worked long hours and the weekend was spent resting and getting ready for Monday. i didn't want the physicians who worked with me to know my disability because in the corporate world, well, it can be very cruel. But I did decide and filed for disability. I got approved this past April, it was almost 2 years. Luckily I had disability insurance at work so I got a check every month. Most people who file for disability are not that lucky. But what I have found is that I have time to rest in the evenings if I need to. Also if I'm having a bad day, I just cancel whatever I have planned. I can take better care of my health. It is not for everyone, I fought it for 10 years. But finally, I had no choice. So really the decision is up to you. Best wishes to you and your future surgery.Hi Deanna!
Thanks for mentioning the situation you are currently in re: surgeries. As a "newbie," I am ignorant to the situations individuals are facing.
The decision re: disability is a very difficult one, as everyone has pointed out. I think it's good that you are thinking about it and considering all of the ramifications. You do have some more time to think about this, which is great!
It can be difficult to win an SSDI case, or sometimes not. Yet, I have heard of more difficulties than not. (Mine was granted without a hearing, etc. I was very fortunate that way.)
One of the problems with deciding when to file is if you do go on SSDI, they will only pay retroactively to the date you'd filed. I knew some people who had waited to file, even though they were not able to work. They could not recover money for the time thay had not worked and had not yet filed! (Even if Doc's chart says "disabled" long before filing date.)
I think this still operates this way? It has been a long time since I have dealt with the initial filing rules.
You know, do you think there is a disability attorney in your area who would likely give you some free advice? I have had several do that over the phone (over the years). SOme will also give a free initial consult, in which they can advise you of all of what you must consider.
Some States have a "Legal Aid" agency, where attorneys work full-time to advise and to represent the disabled. (This is often for free.) Does your State have this service available?
THese attorneys who "specialize" are acutely aware of any/all changes in SSDI law, etc. It's very, very difficult to keep up with all of the law... or to even know all you must consider in this decision.
If I had to do it again, I would definitely get some legal advice. (I went into it "blindly" and happened to get by. Knowing how that system has changed in the past 20 years, I would be very hesitant to deal with SSDI without an attorney.
I think you might be able to get some very good free or low-cost legal advice? I a hopeful you will be able to do so!Deanna, get through the surgery - assess where you are, what you can do, and how you feel. RA plays games with all of us. I doubt whether it's going to stop now.
Marisha, all the money I've put aside, which is never very much because of the continous medical bills is now being used to get through this time of not working. Yesterday, all the other parts of the equation reared their multiple ugly heads and reminded me that the doctor didn't put me on work because of my knees. That is a secondary problem. It is the RA and the FM that are the major components. Having OA in multiple places just makes it worse. So, I don't know what I'll do. Begonia, you are describing what my life is like right now. I rest so I can work. I maximize all my strength to work and there is nothing left over for anything. Life has become a cycle of work, pain and fatigue. I am very concerned that my attempts to keep working are injuring me further. I can't help but hope that getting the knees taken care of will turn the tide for me. But I guess they are concerned about my FM not being under control and my RA is maxed out on meds. Hopeful, thanks for your comments, too. I understand it is very difficult to get SS. But I cannot get an attorney to even speak to me until I go down and file. I've tried several and they all say the same thing. You are right about that they only go back to the date you filed. One of my concerns is that my income keeps plummeting as I try to keep working which will cause my benefits to decrease as well. I am very concerned about this. Fiona, I always enjoy getting your advice. It is so straight forward. I guess I've decided that I am going try and keep off of work with notes from my doctor and then the surgeon. I'll still do work from home to maintain my insurance. After my consult with my surgeon, hopefully I'll know more. Then, I am going to take one or two different directions. If I think I can work, I will utilize Vocational Rehab to help me adapt my equipment at home in order to keep working. Right now, my shoulder and neck are making that very difficult. Failing that, I will go ahead and file for SS. I will have to be one of those people who files for every kind of assistance that I can get. It is so unfair that they put people in this position who honestly feel that they no longer can work, but must keep trying to because they make it so hard to get through the system. It is inhumane. And, it is wrong. Also, welcome aboard Hopeful and Begonia. Glad you're here. Hi Deanna! You do have a great deal to think about. If you are having surgery and you have any deductibles, co-pays, you may want to check into the hospital's medical financial assistance program. Public hospitals have to have some funding available to financially assist patient who are in need. If the hospital has received federal monies for any of their programs, building projects, etc., etc., they are required to have a financial assistance program. The paperwork can be a little bit of a "pain;" yet, whenever I've had to use it (when I was single), it paid 100% of all of my balances for surgeries in two teaching hospitals in two different States. You probably already know all about this! Here it is for those who may not know!Deanna, I think the others have given you good advice. I would say you
really can't decide whetherto work or not until you've had the surgery
and see what you can do. That will probably be at least partialy
decided by your doctors. Can you consider part time work after surgery
if all goes well. Can you work from home? If work is
too much, does your job offer disability retirement? That
might offer you more compensation than disability through
ss. I will keep you in my prayers.
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