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Disability Question


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#1 kellyA

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Posted 25 March 2008 - 04:02 PM

I was diagnosed 2 years ago with systemic scleroderma. I'm 42 with 2 small children. I work full time and was wondering if I could hear from some of you. What made you determine you needed disability, you or the doctor? It's something I've tossed around for about the last 6 months, I can't seem to come to a decision if I should stay home or not, the only time I really don't feel well is when I have a treatment other than that I'm okay, a little tired. I just started to work out at the gym again and I do feel better, I would love to hear from some of you.



#2 janey

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Posted 25 March 2008 - 06:01 PM

Kelly,
I think it is your decision, not your doctor's. Personally, I feel that if you are able to work, then do so. I had to change the type of work I did as well as the number of hours (fulltime to part-time), but I still work and love it. It gives me independence in many ways, it keeps me social, it's mentally challenging and keeps me from focusing fulltime on my health (which is easy to do, if you let it).

However, some jobs are just not possible with certain symptoms. Trying to do a job that you physically are unable to do can be extremely stressful which only makes the disease worse. In such cases, disability could be one's only option. Many of our members are in such situations, thus all the discussions about filing for disability.

In your case, with 2 small children at home I would think you would also have to consider if your job is exhausting you to the point that it affects being the kind of mother you want to be. The only person that can make this decision is you.

Good luck with whatever you decide.
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#3 Karenlee

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Posted 26 March 2008 - 12:51 AM

Kelly,

Sorry to hear you are struggling with the decision. I left my job in January 07. I worked in an office and it was destroying my hands. My fingers were constantly getting infected from paper cuts, or digging for files. At one point I could not even take dictation from my boss because my knuckles were cramping up when I tried to write and keep up with what he was having me write. Not to mention the air conditioning vent was directly above my desk making my Raynauds flare up constantly. I applied for disability and was sent to see one of their doctors who then needs to send a report of approval or denial. Thankfully I was approved. At that point I had no idea I had CREST. Just thought I had a bad case of Raynauds. I was finally approved about 6 months later and told to see a Rhumetologist which is when my journey began. I have a review for renewal in September.
I do have to say being home full time after working for so many years is a difficult transition.
Good luck to you in whatever you decide.

Karen

#4 Peggy

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Posted 26 March 2008 - 03:55 AM

I just made the hard decision to go on disability and applied in December and was approved in January. The transition is hard as some days I feel good enough that I could work but then on the days when I hurt so bad I am so very thankful that I don't have to. I sold insurance so my job entailed going to people's homes and driving some distance every day. Each appointment you never knew what you were walking into as far as illness. Plus the work that I did with my clients was very taxing mentally and I haven't been on top of that for over a year as it seems my cognitive thinking is affected either from the drugs, the disease itself, or the pain. Getting disability for some people on this forum has taken a long time. I was lucky enough, or maybe not, that apparently there was something in my medical records that indicated getting it right away. Due to the time it takes to get it you may want to apply and get the ball rolling. Even if you do get disability you are still also able to work part time up to a certain amount. They tell you how much you are able to make in addition to Social Security. I believe I'm able to make either $600 or $900 a month in addition to what I get from Social Security. So when I am up to it some time in the future I may get a small part time job just to get out of the house. One thing for sure is if your paycheck is a necessity and your illness prevents you from working having the check come each and every month from Social Security really eases the financial burden and takes away a great worry.

The process of applying is really easy to do online, it just takes a while to fill it all out. Then they assign a worker in your area who does a phone interview. It's pretty easy to do. They get your records so you just fill out authorizations which allows them to get the records.

I hope this helps. Good luck in your decision.

Warm hugs.
Peggy



#5 relicmom1

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Posted 26 March 2008 - 04:25 AM

Kelly, I started the diagnosis journey in 1998. It took a few years to get the correct diagnosis. I work in a physican's office and he was also my primary care md. In about 2000 he started asking me how much longer did I think I was going to be able to work, that he didn't think I could very much longer. I finally gave up in Feb 2004. Now mind you, I only worked 4 days per week (Mon, tue, thur and Fri) but I worked 10-12 hours per day!! It got to the point that I could struggle thru work but I came straight home and went to bed and stayed in the bed on my days off. I just couldn't do both. So, on Friday the 13th :P 2004 I announced that that was my last day. Even though it was impossible forme to work and have a home life at the same time, it was a huge adjustment for me to not work. I have worked since I was 15. I had worked in the medical field for 22 years. It's a difficult decision, but one only you can make.
Peace :)
Barbara aka relicmom1

#6 debonair susie

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Posted 26 March 2008 - 06:15 AM

I was diagnosed with Scleroderma in 1995, at which time, my rheumatologist wanted me to quit working and go on disability THEN. However, I was working with my hubby and felt that working was good for me both mentally and emotionally.

She really didn't want me to continue with the kind of work I was doing, which included lifting as much as 70 lbs. I LOVED working with my hubby and I knew then what I know now, that I was into stupidity, continuing to work. It really did a number on me, but I don't regret sticking with it.

Yes, ultimately, it is the person inflicted who makes the decision... but in MY case, the doctor is the one with the sense -- not ME! tongue.gif

In 1997, I went on permanent disability. My doctor said there is nothing "temporary" about my health issues.

Hugs,

Susie


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#7 nan

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Posted 26 March 2008 - 07:30 AM

Kelly,

I was diagnosed in 1998 with Sjogren's syndrome, Fibromyalgia, and Raynaud's. I was a schoolteacher. I kept on plugging, though I missed a lot of days. Teaching is difficult when you feel well. smile.gif In the fall of 2004 I had a major GI bleed and was diagnosed with GAVE( watermelon stomach) I went on extended sick leave and applied for disability. I was denied the first time, but approved the second time. I was finally diagnosed with CREST in 2006. There is no way I could have continued working. It is hard not to do it, but I sleep so much I really don't get bored. Ultimately, the decision is yours. If I had two small children at home I would definitely stop working so that I could enjoy them more. Take care of yourself!

Nan



#8 MaryFanPhilly

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Posted 26 March 2008 - 12:56 PM

Hi Kelly,

 

This decision is such a struggle. Not only is it scary giving up your job but waiting for approval is nerve wracking. I stopped working in Dec 2005, I had a long commute to work and in the colder weather (I live in the northeast) I could not move once I got to work. Even in the warmer weather I found it hard to just hold the steering wheel,, and I wasn't even at work yet! I knew it was time to go. I was missing more and more work, the side effects of the meds were awful, my stomach problems made it very hard to leave the house sometimes, I was beyond exhausted, and was going downhill so fast that I had no choice but to quit working.

 

The first six month period you can NOT work, not at all, not even the minimum. I was lucky and got approved right away, and started getting checks in July 2006. I started feeling better last summer and did some temping. It was nice because I didn't have to take the job if I didn't feel up to it. I don't know what kind of work you do but that may be an option for you in the future.

 

Having the choice is great. I would fill in from time to time (I work in dental offices in the business end of things) and had a good pool of offices to choose from.
Then I got very lucky and found a doctor who wanted me to do his bookkeeping for him, and I could set my own hours and pace myself. If you can take the time to go through the waiting period and hopefully get approved, you can then get a small job as Peggy said.

 

Now, 2 and a half years in, I am going to try working four days a week now. I start on Monday and I'm both excited and scared stiff. If I can't do it, there is no penalty from SSD but at least I gave it a shot. My boss wants me there on whatever terms I can handle, which makes him one in a million.

 

As you can see from all these postings it takes some hard thinking to work vs not to work. Personally I felt so lousy that I didn't care at first, but once I started feeling good on some days it was difficult to stay home full time, which is why temping was so nice. Of course, my doctor pointed out to me, I was feeling better BECAUSE I wasn't physically and mentally stressed from working, so trust me, if I feel I am compromising my health, out I go again.

 

Learn all you can about the disability filing process before you do anything. And get copies of everything from all your doctors. It will go much easier on you if you do that. And make sure they are ALL on board with you applying for SSD.

 

Lots of love and good luck,

 

Mary


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#9 CraigR

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Posted 28 March 2008 - 10:53 AM

I share the mixed feelings about filing for disability. Some times I feel great and can't imagine not working, and other times I wonder how I'll get through the day - and spend my entire weekends in bed. There would also be trouble with my own sense of self-worth, since that seems heavily tied in with my job (in my case, anyway).

I'm reducing from full to part time, and keeping all my health benefits. How is health care taken care of when on full disability? Are there different rules in different states (not a problem, I presume, in countries with national health care).

Thanks

Craig



#10 kellyA

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Posted 28 March 2008 - 11:12 AM

Thank you so much for sharing your stories, It's such a hard decision, I do love my job and I have 23 years in, 2 more and I can retire, I'm 42 years old with 2 little kids and some days I feel like I should take this opportunity and stay home and enjoy the kids, and others days I feel like I'm doing the right thing by working since I feel great now, I have 1 more cytoxan treatment left and we will see where we are from there. I'm not sure if I can sell my doctor on me being disabled. Any insight on that?

Kellt A

NJ



#11 Peggy

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Posted 29 March 2008 - 04:51 AM

I don't believe your doctor will advise you one way or another on going on disability and will say it depends on how you feel. When I decided to go on disability I didn't even ask my doctor but when I told her I got it she was thrilled. She was the one who then indicated I should also get a handicapped parking sticker also.

With regard to insurance I won't be eligible to get on Medicare until I am on disability for 2 years. Even with that though it will save us considerably by getting me off of my husband's insurance. The only thing I will have to do at that time is make sure I still have really good coverage. I do know that you have to get a supplemental along with your Medicare to pick up the 20% that Medicare doesn't cover.

Warm hugs.

Peggy



#12 janey

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Posted 29 March 2008 - 09:17 AM

Kelly,

Speaking as a person drawing a retirement pension - If I were you, I would definitely work the two remaining years if I could. Your retirement pension will likely be more than SSD and it would not require the "qualification process" of SSD, the money spent for a lawyer or the recurring evaluation processes. Once you quality for retirement, your chances of receiving it for life are very high.

It's just my opinion - but since you love your work and you're feeling good, then just go for those last two years and get that pension. I'm drawing a pension and I still work part-time because I love it. My pension is a state education pension and it's still higher than SSD and it doesn't restrict the amount of extra money I make as long as I don't work for a state education institution. SSD limits additional income. As a state retiree I also automatically qualified for the state employees' insurance program. So you need to look closely at your pension benefits and weigh them against SSD.

Jude found us a great article a while back for our Disability Resources page. You might find it interesting. Dame Carol Black on sick-note Britain.

Big Hugs,


Janey Willis
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#13 MaryFanPhilly

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Posted 01 April 2008 - 06:48 AM

Hi Kelly,

 

In my case I let all my doctors know that I was applying for disability. The process involves the SS office getting information from EVERY doctor you have seen. So I let them know that I was having a lot of trouble working, and why, so it was part of my documented record. In a perfect world I think we could make the decision on our own but if our doctor's don't back us up it may be a futile effort. I'm not saying that their opinion means much, but having a documented record that you discussed your daily needs and difficulties with your doctors -and over a period of time- will certainly help to support your case.

 

Assuming someone is actually reading our record, the more we have to support our case the better. There is no such thing as having too much information, and if it is something this important it should be recorded in your medical records.

 

Good luck with your decision.

 

Love,

 

Mary


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#14 KATHRYNE

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Posted 15 September 2013 - 08:42 AM

I am new to this forum and this is my first post.

 

I just wanted to thank everyone who responded to this person's question about Social Security Disability. It was very helpful to me since I applied this past February and was denied just this past month and have appealed my case with my lawyers.

 

I had Open Heart surgery on June 16th this year due to an aneurysm in my aorta so Social Security had to put my claim on hold for two months due to the fact my disability is not my heart but Scleroderma, Raynauds and Porphyria. I have to answer a questionnaire on Immune System Disorder and these comments have given me more confidence to continue on!

 

Thanks Again!

Kathryne Brownlow



#15 Joelf

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Posted 15 September 2013 - 09:54 PM

Hi Kathryne,

 

Welcome to these forums!

 

I'm sorry to hear that you've had recently had to undergo Open Heart surgery and also have Scleroderma, Raynaud's and Porphyria to deal with.

 

I'm afraid I can't give you any first hand information to help with your disability claim (I'm in the UK) but I've included a link to our Disability page which includes some previous discussion threads on this subject which I hope will help you. We also have a wealth of information on our Medical Pages.

 

Please do keep posting and let us know if your appeal is successful.

 

Kind regards,


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#16 Amanda Thorpe

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Posted 15 September 2013 - 10:05 PM

Hello Kathryne

 

Welcome to the forums! Sorry you have other health issues on tops of scleroderma, just googled porpheria and it doesn't sound very nice at all! I reckon you get enough pain from scleroderma and Raynaud's so you certainly don't need anymore causes of pain, namely this porphyria malarkey!

 

Disability is such a difficult process and deeply personal, something "the administration" are oblivious to. I am in the UK and having my entitlement to one of my benefits reviewed right now, although I am expecting good things it's still an unpleasant process to go through.

 

I hope your appeal is successful and in the meantime have a wander around the site.

 

Take care and keep posting.


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#17 Shelley Ensz

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Posted 16 September 2013 - 12:15 PM

Hi Kathryne,

 

Welcome to Sclero Forums! 

 

I'm sorry you have scleroderma...and lots more...and that you are going through the disability process.

 

For you and everyone else going through this, it is of utmost importance to keep on immediately appealing whenever you are denied along the way.  They count on the fact that people who are not disabled will lose interest and move on to some other interest, like a job, for instance!  But what happens is that it can also be enormously discouraging to people who are really and truly sick, as well, and many end up foregoing benefits they are entitled to. But it never, ever, pays to delay applying or appealing for benefits. They can only go retroactive so far, and many people delay so long as to even lose their qualifications for benefits, which is truly a sad state of affairs.

 

Pick yourself up, dust yourself off...and make sure that appeal is successfully filed, asap!

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#18 Kamlesh

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Posted 22 September 2013 - 04:23 PM

Hi Kelly and Kathryne,

I am sorry for what you are going through. I am on long term disability by employers  plan and have also applied for SSDI. I did everything online, visited them once to show my passport to prove I am US citizen, filled out 40+ pages of survey, how  I spend my time.

 

Do you have a way to get any of the followings:

  1. Long Term Disability insurance 
  2. Short Term Disability insurance
  3. Long Term Care
  4. Supplement  Life Insurance

All of above play key  roles and very difficult  to get once you are on disability.

 

I hope you feel better  - Bless you


Kind regards,

Kamlesh