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11/04/2011 06:24 PM

Disability...

libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

How many of you are on disability due to crohns? Or are trying to get disability because of crohns? How long did it take? Did you have a lawyer? What State are you in?

I asked this because I know crohns can be a hard case for some of us trying to get disability. When I was diagnosed around my early 30s I went thru endless surgeries it seemed. I had to keep working because I carried our insurance for our family. It was not easy. Not by any means.

When I had my last surgery in 05 I did pretty well. Then things went downhill, again. 08 was a year spent entirely from the bed to the couch. No energy to shower, fix meals,, clean house, shop for food. The normal things one has to do to live. My dog became my bed partner. He's actually a great partner when I am in this state.

When I finally started feeling like I may live again I decided it was maybe time to start thinking of taking care of me for a change. My health.

I applied for disability in Nov 09. Filled every piece of paperwork out and did the same at least on 3 more occassions answering the same questions over and over again. I won't go into the craziness of some of these questions. But I answered them and sent them back.

Denied within 2 months.. Wow did anyone read my Doctors paperwork on me?? 20 years of medical records and denied within a 2 month period.

In VA you must be unemployed and not gainfully employed for 1 year to be even considered for disability. Well 14 visits in a 12 month period with 2 abcesses from fistulas, weight loss of over 50 lbs charted in less then a 3 month time period, no I was not dieting. Anemic, dehydrated and fatigued so bad I had not even been able to care for myself.

Did I want to appeal? Hmmmmm people always told me I should apply for disability but I figured I had to work because we had to have the insurance. But now my husband was carrying us. Okay this was my opportunity..

All the ads on TV about contacting a disabilty lawyer for what I was entitled to kept my attention. Could I do this? I could give it a shot.

I called one from an area outside of my State. Not much compassion there. Just the facts ma'am...Okay.....this wasn't sounding encouraging. I got all the information they asked me to get for them. Really I was going to have to do all this legwork? I don't feel real good right now..I must have done something wrong because I was sent a letter again telling me I neede this that and some other information. Wow I wasn't prepared to do all this on top of feeling like death already....

Not going to give up! Local disabilty lawyers in my hometown..Well maybe they know the system better right here dealing personally with the staff and lawyers. I'll give them a call. Smile

What a difference. Name and social security number. Get the papers back to us we are sending you back as soon as possible. Papers were simple. My permission for me to release all medical files to my new hometown lawyer.... yippee

Once the ball got rolling it went fast with them doing everything under the sun. I'd occassionally get a call or a letter with a simple question and they'd be back doing my work for me. How nice I could go back to bed. Smile

BUT what seemed like forever was I'd say forever when you are waiting to get this over with. Finally March 2011, yes that much time, I was finally going to court. NOW I was nervous.

My lawyer contacted me for like the 2nd time. His paralegals did all of the contacting me beforehand. He spoke very quietly with me and explained everything that was going to happen. What he wanted me to do and how to answer any questions. I was getting even more nervous and honestly thought I would not be able to go thru with it.

Wow this was really making me nervous. Well if I didn't get it I decided I I would just have to deal with it I told me myself. Feeling sad at the thought of being denied. Sad

Court day. My husband goes with me. I meet my lawyer for the first time. I I feel very alone and scared for some reason.

Courtroom has the Judge sitting beyound me in a court setting. A long table between us. A woman on each side with a computer each of them looking intently into. The Judge doing the same. My husband to the back of me observing. My lawyer to the left of me.

The Judge starts at the beginning of 08 not 20 years before when I was diagnosed. All my records in front of him on his computer. Then the questions. He was actually compassionate. I liked him right off the bat. I I answered each question honestly and briefly. I did feel very small in that place for some reason. I had every emotion in my body going thru me.

Finally he asked me if I wanted to add anything it was about over. I started to speak and had to stop to think for a moment. I relived that entire year to him. Not only did I cry but I poured my heart out to him. I It felt like a burden was lifting off my shoulders. I was telling a man I just met with my husband behind me everything under the sun I felt crohns had done to me for 20 years. Things I'd never even been able to say to my husband who I love dearly.

Things were winding down. The Judge was saying some legal stuff about sending paperwork in and talking with the lawyer.

My lawyer and my husband along with me left the room and we went directly into a private cubicle. The lawyer was excited, I was still a mess from just spilling my guts to a total stranger along with a roomful of strangers. The lawyer tells me I'd been approved. Now.

After about a week I recieved paperwork from social security detailing the amount I would recieve the medicare I was now eligible for. The back pay and how much. Things now were moving much faster.

Thankfully I did not listen to the first lawyers I had contacted who seemd to have no time to do my legal work.

In VA disability lawyers can only charge a certain set fee for their services. Depending on how far back your disabilty is granted from. Even though I have had crohns for just over 20 years mine was set at Sept 08. My best documenting from my Doctors and the fact that I had not worked for over a year and was unable to. Kind of a crock but nonetheless I am very well satisfied. Smile

I wanted to share this with each of you in case you are trying to file disability or have been denied and are thinking of giving up or appealing. Its a hard process but I honestly felt I not only fought for myself but each person I know who has lived with crohns.

I'd love to hear from anyone who is going thru the similiar or even considering it.

Thanks for taking the time to read this long post. I hope I left some encouragement here for anyone who wants to be able to take care of themselves without worrying how much time they will miss from work because of a debilitating disease as crohns can be for us.

Reply

11/04/2011 09:55 PM
JoeG2k11
JoeG2k11  
Posts: 527
Senior Member

Ive been on disability for about 8months now,I got setup a few months after I had my last surgery and took about a month to start getting checks.I am blessed to be on disability until I am healthy enough to go back to working.

11/04/2011 09:57 PM
chl
chl  
Posts: 77
Member

I'm so glad it worked out for you! I really know what you have been through. I have also been living and working with crohns for 20 years, the last 6 of which have been very difficult. I worked in the medical profession and it is very hard to help patients when you are sicker and weaker than they are and when you are caring for someone else you can't just up and go to the bathroom any time you need to.

I had to quit work in 08 also due to my illness and the story is similar to yours with a couple of exceptions. I applied and of course was denied disability. I contacted a lawyer here in town, he was not compassionate. I had been on prednisone for some time and had gained 70 pounds because of it. The lawyer only glanced at the paperwork then told me I did not look like a crohns patient because I was over weight and if I could find a job I better take it.

I was so upset. How can somone judge me by my appearence in only a 5 minute meeting? How could anyone be so cruel?

I did find a part time job and started working, however, my health continued to get worse and I was not able to keep the job. I went from working 4 part days down to only 2 half days a week and had to call in some of those.

At that point someone on here told me to contact Binder & Binder, you hear about them on TV all the time. I was very leary after my first attempt at getting a lawyer. They were different, they got me approved in only 6 months! I was shocked.

I did not however get any back pay because I had gone back to work because of the first idiot. Oh well.

I also hope this helps others who are facing this difficult decision. I loved my job as a MRI technologist, I am 47 and have worked since I was 15 years old, the last 20 years of that with crohns disease. You know when you have to quit, so don't beat yourself up over it.

I wish I could still work, but I know I can't so I now just try to take care of myself and enjoy life.

Take care and God Bless!!

Connie


11/04/2011 10:12 PM
neshama48
neshama48  
Posts: 834
Group Leader

Libit,

Thanks for letting us know about the process for SSDI. From people I know, it is a long and drawn out process. You gave an excellent report on your experiences with it especially for those with CD.

For those wanting advice on how to get advice on working with insurances or SSDI, there is an advocacy group call Advocates for Patients with Chronic Disease http://advocacyforpatients.org/index.html. The person whom founded it is herself with Crohn's.

Jennifer(the founder) is a former trial attorney who when she was not able to work because of the extent of her crohn's, she started this advocacy group.

I have her speak numerous times and if you email her at the site listed above, she will respond to you regarding advocating with SSDI and other insurance matters for free. She is an excellent person and resource to have on your side


11/05/2011 05:29 AM
kildare56
kildare56  
Posts: 4146
VIP Member
I'm an Advocate

As another option, there is even a little known source on a group called MDJunction. It has a specific support group designated to those in need of elp or advice in the application or waiting process for SSDI or SSI AND it evens assists with information about the appeals process. What's more, almost everyone there has been through the process in one form or another so it is not nearly so narrow as one person's take on it. Once again, that's MDJunction!

11/05/2011 07:41 AM
libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

@ Connie congradulations to you also on being appoved. Its a process that really does

wear on your emotions.

@ NeShama - THANK YOU for giving us Jennifers email address and thanks to Jennifer for

being a crohns patient and lawyer also for helping all of us out here. I'll

definitely email her Smile

@ Kildare I know about the SS forum and the leader is wonderful. I have been there

several times when I first started my process. I just wanted us crohnies to be

able to tell our one on one experience with the process. Best wishes to you if you

are also applying.

@ Joe - Smart that you knew to immediately file for disability when you started right

off the bat with your crohns!!!

I hope to hear more from any member(s) who are currently or have been thru the process. Best of luck to each and everyone of you!!!


11/17/2011 07:29 AM
libit
libit  
Posts: 2449
Group Leader
I'm an Advocate

Does anyone know how they tax you on the backpay for disability?? Am I going to have give it all back when I file my taxes this year?? Sad

11/17/2011 08:08 AM
porknang
porknang  
Posts: 903
Member

I was wondering the same thing Libit.I got about 10,000 dollars back pay this year.I have been worried about it.One way of the other, the government will get it back!Oh well, i am just glad that I got approved!!!!

11/19/2011 02:12 PM
bendertwins
bendertwins  
Posts: 216
Member

I just applied today for Disability. I am in PA. I just got out of the hospital with C-diff ontop of my crohns. I have had crohns for 8 years, and have struggled to work. I miss more work then I actually go to work. I had to keep my job for the insurance, and frankly income. My husband now carries insurance, and I am at my breaking point. I am technically still employed, however on medical leave not getting a cent. I am in the hospital atleast once a year for 7-10 plus days. I was reading on the SS website the list of diseases that automatically qualify you for disability, and crohns is one of them, my question is, is this different for each state? Or is this a federal thing?

11/19/2011 02:18 PM
Catfishes24
Catfishes24  
Posts: 1657
Senior Member

Crohn's didn't automatically qualify me for SSDI. Still waiting.
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