Hi I won my case based on my Sjogrens and another auto immune disease. It was the fatigue, overall pain, brain fog from meds and mental stress from it all. SSi does recognize Sjogrens but you need a little more. I also had a shrink to handle some depression associated with the diagnosis of both doseases. I used a company called Allsup and they did everything for me. It took about a year. I was denied once and then approved with them helping me.

Hi Willows. It is extremely important that you come to the point of feeling like you deserve disabiltiy - because you absolutely can't function the way you are! If you don't truly feel worthy, they won't find you worthy. The fact that you are even thinking of partial disability probably means you aren't at the point where you need disability - maybe just a long vacation or something. It's a grueling process that takes at least a year (where you are not working and are without any salary at all). You may be asked to see several doctors of their choosing. You could be turned down - most people are at least once. You really need to own the fact that you need disability because there is no other option for you. It's not a fun process and if you feel you can still work or feel guilty about it, it's probably not for you at this time. Good luck on whatever you decide! Kat

Hi Kat;
The main problem is not that I feel I am not worthy of it. The main problem is that I can't afford to go 3 years without income!! I make more money than my husband and if I am not working for even a couple months with no income we are going to lose our home and cars.
I have already explained to my kids that we are going to have to cut way back on the "extra" stuff and they agree we can do it, but we can't survive if I can't buy groceries and put a roof over our heads. The cost of food has gone way up and my kids are growing and eat more. They need clothes constantly. My 12 year old is 6'2" and 200 pounds!!! My 10 year old and 5 year old are right behind him!! I don't buy expensive clothes for them, but adult clothes cost a lot more than kids clothes.
If I go on disability my employer pays 80% of my income but I am sure that will only last so long!! So what do I do? Choose the livelyhood of my family or selfishly give in and go on disability? I honestly don't think I can do this much longer but my kids come first!! Their needs come first!

Willow, You should really research this before you apply. There's an article about disability insurance in this month's Klipinger magazine (red cover). It may give you some good info.

Dear Achybones~
I found the article online. Thanks for the source. The problem I am having is that I pay extra out of each pay to get a certain percentage in disability. My first year with the hospital I got nothing. Then it went to 44% and then 66%. Now that I have been with the hospital for over 6 years I pay in to get 80% if I have to go on disability. I raised it to the 80% just a year ago because I knew my condition was getting worse.
The problem is that I don't know how long they will pay that money out and I would be kicked off of their insurance and half to pay half of the COBRA cost according to their policy. I don't know if anyone has had a run in with COBRA, but it is very expensive and if you have a previous health condition...as we do....it is even costlier!!
The other thing I have noticed is that the hospital does not like employees on disability. They will find something for you to do to make sure they are not paying out for you. For example, a fellow nurse was in a motorcycle accident two years ago and is now paralyzed from the chest down. Once she was out of the hospital and settles into her new life, they created a position for her at the hospital reviewing nursing policy. Another co-worker has been diagnosed with colon cancer and is undergoing chemo. They are allowing her to work from home while she undergoes treatment.
I have a huge issue with trust. I feel like if I do this it puts a target on my back and they will just be waiting for me to screw up so they can get rid of me and won't have to pay that money to me.
I have applied for jobs within the hospital that would be much easier on my body that bedside nursing, but they see the way I walk and move and they know something is up and they don't offer me the job. I have interviewed for many jobs that I am more than qualified for and they have given the jobs to people less qualified. I am not stupid. I see what is going on here. They tell me HR can't release my medical information, but they know!!

Willows, Good that you found the article. I hope it helps. I haven't had time to read it myself yet, but I will.

Yes, I am concerned that once you report/apply for disability, that puts a taget on your back with your existing job as well as future jobs. That's why you have to find out everything before you make such a move.

Did you say you don't know how much the cap is on the disability insurance they will pay? It must say somewhere in the policy--this is important.

Also, you must find out what is your co-pay on your COBRA. This must be written down somewhere. What about the health insurance booklet from HR? On-line from your HR website, if any?

Another thing you may look into is the protection you have under the American with Disabilities Act. Under this Federal (?) act, the employer is supposed to accomodate workers with disabilities, by modifying their job and/or provide reasonable accommodations to the worker.

I will be trying for disability when I hit 62 so right now I am still working full time. I have sjs and advanced osteoarthritis in my back and neck. I deal with pain, tendonitis, extreme fatique and on and on. Sjogrens was just recently added as a disability with Social Security. I think you can win with it by itself. I too must worry about income so that is why I am waiting so I can at least collect my regular ss benefits while I am applying for ssd. My understanding that most lawyers and Allsup will take a percentage of your first check, if you win as that will be the biggest one. If they cannot get if for you then you will pay nothing.

You could try Short Term Disability through work which they should pay completely at whatever percent is in the policy. I was out for three months last year at 66 and 2/3% of my normal pay.

I would be better off at this point in my life not to be working full time anymore so things, lifestyle will have to change. I don't know where you live but there are many other resources out there too. Subsidized housing through HUD, help for disabled people with children, help with food, clothing, medical bills etc.

If you do go for SSD keep in mind even if you win you will have to wait two years for Medicare to kick in but depending on your individual circumstances you might be eligible for Medicaid which pays for everything.

You really need to do some research and see what is out there for you so if you do stop working you will know what is available for you and your kids.

Good luck.

Sjogren's is a disability under the SSI guidelines. The SSF has information about filing at their website. Let me know if you can't find it, and I'll send it to you directly.

Willow,
Your situation prompted me to look into my Long Term Disability insurance that I bought through my workplace's group plan over ten years ago. Guess what? Since the time I bought the plan, they have changed insurance companies, and there's a new fine print on the policy that puts a cap payment for "connective tissue diseases" (like sjs)--maximum of 2 years (paying 65% of my paycheck). On top of that, it subtracts any income that I get from any other source (disability from the gov't, etc.) Hmmm, how shrewd of the insur. companies... At some point, this insur policy is good for nothing.

Achybones22 has a wonderful, updated point.

I got terribly ill with my first round of Sjogren's a few years back. My insurance I paid for via employment was simply a monster to work with. I was in bed, couldn't move, and on the phone dealing with the insurance company's on-going denial of short term insurance. When they finally approved me on the short - term, they dug their heals in and refused my long-term.

If you look at criteria to go on Social Security Disability Insurance and feel you can prove you meet those requirements, I would advocate to go that route at the same time you go through the company's disability insurance. (you most likely will get approved for your SSDI and paid long before you would get anything from a private insurance company)....(and SSDI is a rugged process, in itself!). I'm a social worker, so I have professional experience as well as personal experience in wrangling these groups!

You can also see if there are non-profit disability advocate agencies in your region. They will help you gather your paper work and assist you through the bureaucratic process. Simply "google" for a national disability advocacy group.

Take care! Charla

I hope you figure out how to deal with this BIG change in your life---it is hard--you need to go on a Suzzie Orman diet. Figure it out---you will be ok.
Your health comes first then your kids.
You are entitled to disability. Get it. Use it. Your health is more important. Go to ALANON meetings. It will help you focus on you.
Then after you are strong, you will have a plan, a better life.
Good Luck. I know you can do it.
I did it. It sucks a little in the beginning but 5 years later, i have a better quality of life. Stress will always be there, its not as intense.

Thank you for all the comments. I am currently getting STD through my employer (since they are the ones that said I can not work safely in my current position). Fortunately, I saw this coming years ago and increased my STD benefits to 80%. So, for the first 3 months I get that then it drops to 66 2/3%. I am hoping that I will have an answer from SSDI by then!!
In the mean time, I had a functional capaity test which clearly proves that I can not safely perform my job. My employer stated that they do not have a position available for me that fits the criteria and they do not have a policy in place to help people like me. The ironic part is that I firmly believe that going into nursing is at least partially (if not completely) responsible for the Lupus. Having a baby is responsible for the Sjogren's. I didn't have any symptoms until I got the second hepaitits B shot for nursing school and then all my symptoms of Lupus appeared.
I was told by human resources that I would have to find my own job. I found one on their site that may fit, but now I don't know if I should even think about going back to work just yet. I don't know what to do. Should I bid on the job and see where it takes me or should I just enjoy being on disability for the time being. It's a catch 22 because we really need my income, but I don't knowif working full time is a good idea for my body right now. Though I don't feel any change in the level of pain, I do feel more rested and able to listen to my body.