I can't sleep. The legs are moving a mile an hour with neuropathy. My bad hip is killing me, back and neck yelling, and of course, have dry everything. I guess it's just one of those nights.
So the Rheumy told me last week that he didn't think I'd qualify for SSDI. Great. That was so discouraging. He doesn't know everything I'm going through.
But, I know I can't do it anymore. I go to work practically falling on my face everyday. I'm not doing everything i should at work, though i try. I get so fatigued, it's all I an do to just crash when I get home.
So, I'm scared to pieces, but I turned in my retirement papers yesterday. Ahahahaha. It's been 30 years in the district as a teacher and technology specialist.
I will need to get disability to make it financially as it's just me and the dogs. I will get 5 years more of insurance, but I'm only 52, so there will be a gap, so I will need Medicare.
I'm scared, but at the same time, relieved. It will work out. Maybe now I will have time to take are of myself.
Doxie,
What a tough decision that had to be for you to put in your retirement papers. I have the utmost admiration for you long-term teachers! ;)
No, your Rheumy doesn't know what you're going through, and I doubt he works part-time for the SSA. ( I need a "sarcastic" icon) So...how would he be able to predict if you'd qualify for Social Security Disability? His personal opinion doesn't matter. The medical records showing your health issues matter.
As you may know, Sjogren's Syndrome now has it's own listing in regard to SSA qualifications. They look at a variety of factors. Some of these are: your age, your education, your health issues as they pertain to daily living and if you can still do the work you've always done.
Have you considered filing for SSD yet? Most people don't file as soon as they could. It's natural to feel scared and relieved at the same time. This is a big change, but with time to take care of yourself you may find you feel a bit better.
Please know we're here to support you. ;)
Melinda
Best wishes to you, and I hope your Rheumy is just plain wrong on his opinion.
Prayers for you..
I say congrats Doxie....I know you haven't felt very well in quite some time. I know that feeling of "relief" when the full-time work is behind you. I haven't experienced it but when I'm off and I think of never going back I feel calm and at peace :)
Hi Doxie,
Does your work also have a Long Term Disability Group Plan that you are part of? If so, please make sure you apply for that before you take the retirement option.
I understand the issues you are facing and the uncertainty as well. I had to do the same thing about 4 years ago and now am on LTD as well as Social Security disability.
Wishing you the best of luck,
Daisy
Doxie, I hope that your retirement will be a great blessing. If you still want to teach, you could produce educational videos for YouTube. There is a very large group of children that are home schooled. The video would allow you to go faster and deeper into the subjects that you teach.
I often had home school kids come to my science classes. The parents would ask when I was teaching and what I was teaching to get their children into my classes. It was strange to see the same kids at a school 30 miles away so they could get into one of my classes. Some took my same class twice at different locations. When this happened I was down to one hour of work per day and could not put together the YouTube to extend may earnings.
My brother-in-law is a lawyer who specializes in disability. He's told me in the past that, when I'm ready to apply for disability, he can help me. He said that he's gotten disability for several people with Sjogren's. And this is a small rural community lawyer we're talking about.
I don't know where you live, but it might be a good idea to check around and see if there's an attorney in your area who specializes in disability.
Meanwhile, congratulations on making your decision -- I know it's frightening, but I think it's the right thing to do.
Awwww - thanks you guys. You're all so awesome! I'm actually feeling so good about it today. I feel as if a heavy burden has been lifted. Today reinforced my decision when I had to tell a couple people I had hit my limit and had to leave. June can't come quick enough!
Thanks Melinda, I did read that Sjs is on the disability list now. Thank goodness. I thought I have to have stopped working in order to apply for SS disability?
Gold88, thanks for your support, wishes, and being a friend.
Daisy, I do have long term disability through work, but the benefits are limited, and would have ended in 2 years. It would also make me lose my district retirement benefits which are much better. Thanks for the thought and the wishes.
Parched, Joe, and A66eyroad! Thanks for your well wishes, and suggestions, I'll have to look into some of that. I think I'll try applying for the disability, and if I don't get it, I'll get a lawyer. A66eyroad, does your brother take out of towners? (Utah) ;)
I'm crashed on the bed with my lovable doxies, and my work iPad. And I'm at peace! Blessings to you all, and thanks for the encouragement it really helps! :)
Tami
Hi Doxie,
I'm glad you hear you're feeling good today about your decision. ;)
I wasn't clear when I said most people don't file as soon as possible. I should have clarified that with the fact that "as soon as you are no longer working." Think that's one of the first questions SSA asks.
You're going to get through these life changes just fine. Remember we're all with you!
Melinda
Doxie I am glad you have made your decision, and that you feel like a load has been lifted. I retired early as a teacher. I went into it later in life, but got in 15 years when sjogren's etc. put it to an end.
I am thankful I did it though, both going in to teaching, and the early retirement. I hurt so much that I can't imagine making it through a day now.
I also put in for disability, and got it the first time, and didn't have a lawyer. I think the results of how sick they seen I was, and my age made it. I know this one lady I seen knew that I would never have wanted to quit my teaching unless I was really ill.
Take Care
susanep :)
The biggest mistake most people make is that they don't really describe their average day in the SS application; they describe a good day, and you need to be honest -- with yourself, first. also, keep a copy of all your papers. When they re certify you they are looking at consistency, so don't mess up in the future.
Applying for and being awarded disability is depressing, quite literally. Just because you get a disability award it doesn't mean that you are now worthless. You are still the same person, and very important to many people!
Thanks for the tips, slccom! I'll take all the advice I can. I know that sometimes I put on the appearance that I feel ok even when I'm ready to keel over. I know I need to stop putting up a front sometimes.
Years ago when I had Typhoid fever, I had someone help wash my hair, because I was too sick to get out of bed. A few people that came to visit said I didn't look sick.
We really do have a disease that can be very invisible at times.
Doxie, it does not have to be your rheumy to "recommend" SSD. I filed before I had Sjogrens, but my eyes were ruined by Lasik surgery. I worked for 5 years struggling and my Lasik surgeon tole me that "you'll not get social security from this." Well, guess what? I did get social security and I got it at first try. I relied on my GP to lead the cast. I remember him saying "disability should be easy for you because of your eyes."
You can use any dr that you've seen and should. If you've seen a mental health worker by all means use them. Also relatives or friends can write things for you. So, just don't be discouraged because of dr scrooge. I had my GP fill out the papers first and then I made appts with the other docs. I went in as if it was an appointment and they can bill my insurance. I had my GP's sample for them to use as their template. Some docs are not very cooperative about disability papers.
You should file now for short time disability from your job. You may be able to collect this for 6 months and that is also the waiting period for social security. I had my short term ins stop just as my disability kicked in. Good luck. Lucy
Thanks for your advice Lucy, its very helpful. I'm nervous about asking all my docs. I did tell my back doc months ago and he seemed supportive.
I think I need to try to find the forms so i can look at them now, so I'll know what I'm doing in June.
I think I have a lot of documentation with medical tests, etc.
Are there forms for the docs to fill out, or do they just write a letter?
I have a return appointment with the Rheumy in May. I think I'll change it to June, after I've retired/quit. He's usually had been pretty supportive, so I think I'll lay it all on the line for him then, and hope I get through to him.
Since starting down this Sjogrens path, the number and types of docs I go to have increased a lot!
Do not be deterred if a doc disagrees with you. Go to the next one. A psychologist is good too. Any one you have a history with. The docs don't make the decision anyhow, the SS adm does. You have to stay calm during the process and now leading up to it. The SS dept will help you with paperwork. The more info you can get from your drs the better. Ask for your medical records from each one so you have a copy. You can then give them to SS and make copies for yourself.
Remember, my darn doc who ruined my eyes with LaSIK had the nerve to tell me I wouldn't get SS. I thought I probably wouldn't but was given a spark of hope by my GP.
Good luck. Lucy
Thanks for your support Lucy. How's your new knee holding up? Is it feeling a lot better?
Find a local independent living center, or disability advocacy group to help with the paperwork. No sense paying a lawyer. Take your time filling out the daily living part, and try not to be emotional. Be sure to include ALL your issues. The feet you can't stand on for more than an hour, the throbbing ache your joints let you enjoy, the depression, the anxiety, the brain fog, everything! Ask family, friends, coworkers and supervisors, and loved ones for examples of things you couldn't do, silly mistakes you made (the iron in the freezer, the keys in the laundry, mixing up days and appointments. Just make a list, cry a little, make more list. Organizing it into pain, fatigue, brain fog, stamina (lack thereof), part of the body, whatever makes any reasonable sense. If you get help doing this, tell the disability folks who, and what they did for you.
I always hate transition times. But once you are not working your energy will be freed up for things you want to do instead. Hang in there!
Oh, and if your dogs are important to your emotional and mental health, get a doctor's letter to that effect, and see about getting or making a vest for the animal (s). You can buy inexpensive support dog badges online, but the vests, I've heard, are very expensive. You can't take the dogs everywhere, but you are entitled to the animals under the Fair Housing Act. And, you can deduct the veterinary, food and other expenses for the dogs on your taxes.
Slccom, thanks so much for all those tips. I'm realizing that I need to start now to plan when to make my doctor visits as it can take months to get in to them, even my pcp sometimes.
You've really given me a breakdown on how I can start, which is awesome so it seems so overwhelming. I'll just start working on it bit by bit.
In some ways I think you need to be well enough to be able to prove your sick!
I'm having surgery next week, so I'll have 8 weeks off work where I can think about some of this stuff and make a plan.
Everyone has been awesome and so helpful. I'm grateful to be a member of the forum! 8)
Quote from: slccom on January 11, 2012, 08:05:26 PM
The biggest mistake most people make is that they don't really describe their average day in the SS application; they describe a good day, and you need to be honest -- with yourself, first. also, keep a copy of all your papers. When they re certify you they are looking at consistency, so don't mess up in the future.
Applying for and being awarded disability is depressing, quite literally. Just because you get a disability award it doesn't mean that you are now worthless. You are still the same person, and very important to many people!
I'm chiming in to add/stress a couple of points:
1. Start writing a description of your "typical" or "typical bad" day NOW.
2. Write it in terms of "activities of daily living" -- get out of bed, use eye drops, scrub eyelids, rinse mouth with special preparation, shower using products or shower aids or shower hose, wash hair with special product, perhaps.
Go back to bed for two hours.
(I go back to bed and use my CPAP machine for another two hours)
Perhaps you go back to bed and use your iPad, because of aches and pains sitting at the computer -- something like that.
Fix breakfast; What do you do if on a bad day you just look at what you need to do to fix breakfast and walk out of the kitchen? Write that down.
Walking the dachshunds: is someone available to help on a bad day? Include that. If you always/almost always are able to walk the dogs, leave that out.
I may not really have described your day, but you can keep alert to descriptions of the ways people on this forum describe their activities, and if it fits, add it to your description of Activities of Daily Living.
It helps if the total picture makes the case that you could not do your usual and customary work, because of the difficulties in sitting at a desk or using equipment involved or standing in front of a class, or talking to a class -- dry mouth interferes with me. (Not because of the aids you would need, because the Americans with Disabilities Act {ADA} would allow you to use them at work.)
You've had lots of great advice here; I'm just refining the task.
Best of luck with your surgery, and your last months at work.
Soycoffee
PS I see now that slccom has now posted a lot of this. Take what works for your situation, and start now to note things and write them down.
Yes, I have had lots of advice and help. I really appreciate it. Soycoffee - what you mentioned is not redundant, they are great tips. I actually started keeping a log of my day today.
I found some disability tips from the SSF, which has some of the same things y'all mentioned (but your descriptions are better). http://www.sjogrens.org/files/brochures/disability_benefits.pdf
Last night I was reading the newest "The Sjogren's Book" fourth edition on my kindle. In the back they list some more tips too.
Hopefully all the tips given will help a lot of other people too. :)