Author Topic: How many of you have had to go on disability because of Sjogrens?  (Read 3348 times)

kwolfsheimer

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #15 on: February 02, 2010, 07:06:05 PM »
Chickpea-- I am in your boat.  I am an English professor and for the past 6 months, I have been declining in mental functions.  I also have speech issues. I can't remember simple words; lecturing is a nightmare.  I have difficulty reading anything of any length or difficulty-- not great for an English teacher. I can't follow complicated instructions.  I am so tired that I can barely muster up the strength to make it through back-to-back classes.

I used to work full-time as a high school teacher.  Then I moved to part-time work teaching college with less stress.  But I work full-time hours with part-time benefits.  I am worried that working part-time is going to hurt me significantly.  I have no life insurance, very little retirement.  My husband had threatened me with divorce several months ago-- we have since patched things up-- but it made me realize how financially vulnerable I am.  I have no disability to rely on other than Social Security... and I would love to hear more comments from people who have filed for disability and how they manage.  I realize that there is probably a conference topic on this very topic and it would be worth going to a conference or buying a video/book to get some financial planning advice for people with long-term disabilities.

It makes me so very sad and depressed to realize that the one thing that I prided myself most on-- my brain-- is rapidly disappearing.  :'(

Rhonda

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #16 on: February 02, 2010, 07:24:03 PM »
I am currently in the throes of making the big decision.  I have two doctors tell me to take medical disabiity.  I have fought it off for quite some time, but I do not think I can continue much longer.  I am so tired I can hardly see straight.  I commute over an hour one way to work and so my 8 hr day becomes a 10 hour day.  I am trying to take online classes at night, but I am finding it increasingly more difficult.  I am so frustrated I can hardly stand it.  I am so tired of being tired.  I have balance problems, blurry vision, difficulty remembering simple words, find myself typing words backwords or forgetting to add words to a sentence and that is all before I get to the muscle and joint pain, dry eyes, dry, itchy skin... it hurts to type due to swollen, achy hands... and welll.... so on ... just like everyone else... just one big barrel of laughs... NOT!

I have finally gotten the paperwork together....now it's just filling it out.. I am scared to death.. I am only 50... but I am more scared of making a serious mistake at work.  I don't want to get fired...I want to at least go out on my terms... well as best I can.  The SJS, RA and Fibro are making the decision for me, but at least I am not being fired. 


navydad

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #17 on: February 02, 2010, 09:31:33 PM »
if you feel you cant dfo it anymore,, its time to take the plunge,, get all your ducks in a row and go for it,,

ohiosocialworker

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #18 on: February 02, 2010, 09:40:57 PM »
Hey thanks everybody for all the responses....very diverse responses.  I am going to take time to look over each response in depth.  I am not thinking of applying for disability anytime soon, but I keep thinking if my brain functioning gets any worse down the road, I am wondering how I will function at work.  Anyway, I am glad I found this site as there is so much support from all of you.  Thanks!!!

baileybugster

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #19 on: February 02, 2010, 10:39:29 PM »
I have been diagnosed with SS.  I filed for disablity due to all of the issues I am having.  I have not been able to work since March 2009.  Most days I am unable to walk for ny lenght of time.  I am unable to write since my fingers on my right hand are curled and I have so much weakness.  The fatigue is horrible.  I fall all the time for some reason.  I also have the joint and muscle pains.  It is just one new symptoms after another.  I have been turned down and I filed for a reconsideration.  I was turned down for that but they did not have all of the new info from my doctors so that hurt me.  I talked with an attorney and they are willing to take my case.  I was glad of that because they say if an attorney takes your case then you have a better chance of winning.  They don't get paid unless you get approved so they are picky about who they represent.  I went thru all the info and sent them my medical records so we are now filing for a administrative law judge hearing.  I know that it is going to take some time but I guess this is all I can do.

I feel bad because it is causing us to struggle financially.  My husband is a really good sport so that helps a great deal.

Sheila

ScottishLass

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #20 on: February 03, 2010, 04:34:24 AM »
Chickpea,
thanks for this information re: disability living allowance. I did fill in the forms (hated it also) about a year ago, but didn't base it on my worst days and did go into the fact that some days I was ok.......will consider reapplying. I did however find it very difficult to fill in, being someone who is always wanting to be seen as capable and willing to try and manage as much as possible. But I guess the way to get anything is to basically focus only on the bad days.
Thanks

beverley

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #21 on: February 03, 2010, 02:12:55 PM »
I started a new topic called You and Me Both Wen this evening (UK time) and it is all about how I have failed at work this week because of SJS and stress.  My Headteacher doesn't think I will manage to teach another full academic year because of my health and he has, bless him, made some suggestions about how to sideline my career into a less stressful avenue, but I really don't know how successful that would be financially.

It just adds to all the worry and depression that can go with SJS and I feel really inadequate, when I am used to feeling organized, efficient and good at what I do.  It's a real come down and you don't need the money worries on top of everything else.

Beverley

Epson

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #22 on: February 03, 2010, 11:12:45 PM »
I have filed with SS and you know what, I don't care if they turn me down, as long as they tell me where I can get a job that lets you take off for all my doctor appointments, allows me to take a 2 hour nap due to fatigue, doesn't make me walk too far, don't need the use of my hands every day and doesn't mind that I'm looking in the refrigerator for my coat.  Anyone know of an employer like that?
« Last Edit: February 04, 2010, 02:15:50 PM by Epson »
To alcohol! The cause of - and solution to - all of life's problems!  Homer................Simpson

baileybugster

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #23 on: February 04, 2010, 10:55:08 PM »
Epson

I think you could not have said this any better.  Wow, that is exactly how I feel every day.  Hard to find a job that will allow for all of that. 

Sheila

irish

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #24 on: February 05, 2010, 10:46:05 PM »
Epson, If that is what you put on your disability application they will either think you are a barrel of laughs or you are one sick dude. Sorry, I forgot that you are a barrel of laughs even though you are one sick dude!!! :D

I got up one morning in June 2003 and told my hubby (who has been on disability since 1995 for autoimmune diseases) that I could not do it anymore. I had no intention of quitting my job and never working again. Silly me, I thought I would take the summer off and do some more doctoring and maybe get diagnosed (I had only been on a qwest for diagnosis since 1996) and rested up and then find another part time nurses job.

Well, I worked till the end of June, started making dr appts and also watching the paper for nursing jobs for August-Sept. and also had a son and wife come to live with us after her grad school graduation and finding a job.Sooo, I did have witnesses besides my hubby for what transpired that summer. By 3 works after quitting I was in the recliner much of the time with many different symptoms and pain. I got diagnosed with sjogrens that September.

Thankful to have a diagnosis I went from one health issue to another and to many doctors and applied for disability in Nov 2003 and received it the first time around in April 2004. Remember I am a nurse so all those forms did not scare me---they just made me mad and I darn near died trying to get the stuff organized.

I got diagnosed with Myasthenia gravis, Hashimotos and Dysgammaglobulinemia (severely low t-cells) in 2006 and then started IVIG. I have never been rechecked by the Social security disability division as far as I can remember. And I think I would remember as you have to fill in a lot of stuff all over again. I think the reason I got approved the first time around is because SS knew how sick I was before I did. Darned if I wasn't dummer than a doornail about my health issues.My health issues started over 40+ years ago so how would I know what to even complain about. One gets so used to being sick that you hardly think to complain of certain things to docs sometimes. Good luck to all of you folks. Irish ;D

Billydude

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #25 on: February 06, 2010, 01:09:10 AM »
I left my office job about 6 years ago because I was finding it difficult.  I wasn't diagnosed at that time but was on workmans comp from time to time with hand numbness and carpel tunnel.   I finally decided to pursue my dream and become af full time artist.   I had lots of success and made a living at being an artist for about 5 years but have started winding down as I just don't have the stamina to pursue it any longer.   Doing art shows and my new inability to drive don't mix well.   Now I have difficulty painting as I can't stand for very long.   I'm on SSDI now which is a god send as I don't know what I do without it.

navydad

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #26 on: February 06, 2010, 03:25:21 PM »
I feel like a failure having to apply for SSD, i mentioned that the laywer called me n thursday and told me we have stuck our toes in the water in the process,, Epson,, I am glad to see you so upbeat all the time,, I wsh I had that,, What is it with the hands,, my hands started to hurt months ago,, now there about useless for fine motir skills,, I can barely write my name for goodness sakes,, and its gotten so bad over the last few months,, Two doctors I talked to last week had some really bad things to say about the one neuro that DX;ed me with fibro,, basically said hes a jerk and was glad he left teh practice,,
  I spent the day trying to clean up after teh storm,, knoked a lot of my shrubs over,, and snapped some of my trees,, at least teh sun is out now,, but all night we heard brancehs hitting the roof,, I made teh boys help me do the  driveway
  The dryness is horrible,, I thought spending al the time outside today would help me get a runny nose which I actually miss,, but my sinuses are so dry, I miss that, I just hate the creeply crawlys,  throughout my body, its no way to live,,
  Well talked to the Rheummy yesterday,, hes pretty disgusted with Neuros,, and he now wants me to consider Rituxin again,, I have no real idea what to do,, I am scheduled for IVIG tuesday and wed,, and have to see a gastro on monday,, I;m sick of my stomach feeling like some one is choking my guts with  a vise,,, but its just another doctors apt where nothing evfer gets solved,, and I wonder about how long I can hold out from work,, but I know in my heart if I even try to work like this,, I wont last a week,, i really woudnt,, I would keel over,, but i guess thats not so bad,, let someone else worry about me, but here in Pittsburgh,, if you have a pulse, theres nothing wrong with you

Billydude

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #27 on: February 06, 2010, 04:35:25 PM »
Navydad!  Get over that.  You are not a failure for applying for SSDI.   You've paid into it all these years for just this reason.  You deserve it.

baileybugster

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #28 on: February 06, 2010, 09:27:19 PM »
navydad

You should not feel like a failure for applying for Social Security.  I applied and I also had a little struggle with it.  I just felt like I was giving up at that point.  Then it really hit home just how sick I have been.  This disease is very hard on us and we should try not to bring more worries and stress on ourselves.  I know that is easier said than done.  Hang in there.

Sheila

beverley

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Re: How many of you have had to go on disability because of Sjogrens?
« Reply #29 on: February 07, 2010, 07:18:29 AM »
I've been looking into leaving teaching on the grounds of ill health.  To qualify for enhanced pension, I would have to prove I couldn't do any other job.  Well obviously I could do something less demanding at this stage, so that's out of the window.  Now looking into losing part of my pension by going early into retirement and then working doing private tuition and perhaps Special Needs coordinator for a couple of schools, say two days a week.  It would still be a big cut, but I might manage it.

Tricky to set up though, so I'm not sure.

Beverley