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Life With Lupus

I had my disability hearing yesterday


#1

I went in to my hearing a little nervous, but mostly a peace. I committed to just be honest and do the best I could to describe what I go through on a day to day basis. At the last minute, my judge was changed because the judge I was scheduled with was not there!? My hearing was at 2:15 we didn’t go back until 3:15. I left the house at 12:00 and by this point, I was hurting and it was hard to sit for long, but I managed. The judge asked me very few questions and mostly spoke to the vocational expert and my attorney. The conclusion he came to, or at least the only one he shared with me, was that I am OCD and suffer from a deep seeded anxiety. What??? I do agree that I have some anxiety, but I feel that it is more a side effect of the disease and the extreme financial stress we have faced with my enormous medical expenses and loss of income. I am at a loss… How can a judge that has met with me for 30 min. Come to this conclusion while my doctors, some who have see me every two months for years, have NEVER addressed a mental condition. In fact, they have urged me to dismiss any feelings of this being in my head or feeling like I sounded crazy when I would list off the numerous symptoms I experience. Now I really do feel crazy.

On the other hand, If he is right, I can stop taking all these toxic meds get rid of all my expensive specialists, stop the repetitive lab tests and just see a counselor a few times a month…


#2

If for some reason your disability claim is denied, I would strongly suggest that you hire an SSDI attorney as they have a vested interest in getting your case won: being paid. I was told by mine that I had a 50-50 chance of being approved the first time, and 80-20 by the third time. Those are pretty good odds. Especially the 80-20 in your favor. The down side is that you have to give them a quarter of your lump sum payment for past disability owed you.

I hope that you do win your case, though. It's really hard to wait for the decision but if it doesn't go your way, you can get the SSDI attorneys on your case ASAP.


#3

Was this your appeal hearing? One of the things ssdi does when you appeal is require you to undergo a psych evaluation, that's what they did to me, but it didn't help, their doctor determined that while I was mildly depressed it was due to my extremely poor health not mental illness. I urge you to keep fighting ssdi, and please for your own sake don't make any rash decisions, talk to your doctors. Stopping medications and not seeing doctors can have some pretty severe consequences.


#4

I feel so sorry about this. But a little humor in the last paragraph did make me laugh a little at the irony. Unfortunately, it’s not a laughing matter.


#5

The attorneys get 25% or $6000 of your winnings (back earnings) whichever is less. It is taken from your winnings before you you get paid so you never miss it.

It is nearly impossible to win without a great attorney. My rheumatologist at Stanford recommended the national firm Binder and Binder. I used them and won without going to court at all. They are great and handled everything by phone and mail. Another good national firm to use is Alsup.

Good luck and don’t give up. We all get anxiety from the pain alone then add on all the stress from trying to get medical help and many times the OCD can kick in from that. I personally believe those are secondary reactions due to your Lupus and other related illnesses.

Hang on strong and we’re here for you!

(((HUGS)))


#6

TJ, that’s just AWFUL! Remember that the general public has a tough time understanding these diseases and while it doesn’t excuse such blindness by a member of the justice system, it does warrant NOT GIVING UP! YOU know the truth, you live in ur body daily, please DO NOT give up the good fight either financially or physically. We got ur back here, so remember that while this AMAZING forum doesn’t exist in bodily form in ur life, u can always turn here for understanding, acceptance and love. That was just ONE opinion of ur condition, and one based very little on factual evidence! I am SO sad for u. What has happened to u is EXACTLY what I fear…Blessings on u in ur struggles, my friend. I’m sending u light and love.


#7

Oops! Want to ask: what state did this occur in, please? Just curious…


#8

Thank you all for your replies! It means so much to have the support of this group. I have said it before, but I will say it again… I would not wish this disease on anyone, but it is also nice to know there are others out there that understand, truly understand, because they are going through the same thing. You guys have kept me sane through this, thank you!

I do have an attorney helping and the judge did not make a decision yet. He asked her to research, submit something and he wants me to set up a counseling appointment.

In the hearing, the judge had my attorney read the symptoms of anxiety (close to the one listed) to me and asked me to respond yes or no if I had these symptoms:



1.Feelings of panic, fear, and uneasiness

2.Problems sleeping

3.Cold or sweaty hands and/or feet

4.Shortness of breath

5.Heart palpitations

6.An inability to be still and calm

7.Dry mouth

8.Numbness or tingling in the hands or feet

9.Nausea

10.Muscle tension

11.Dizziness



I have secondary sjogrens and raynauds,so as you can imagine, I said yes to almost all. Who with any autoimmune disease wouldn’t?



Kari, I live in Texas. Don’t let my experience keep you from fighting for disability if you need it. I am not giving up regardless of how this turns out. I would love to go back to work, but I know that at this time, I can’t. So I keep fighting :slight_smile:


#9

So did you get disability approval.


#10

Lia, the judge does not let you know at the hearing. They Mail their decision. So for now, I pray and wait.


#11

That's a GOOD resource (the disability digest.) It's free and has some really great advice.

John "JC" Colyer said:

Ask @ http://www.thedisabilitydigest.com/1A.html, May be they can give advice,can't hurt to try


#12

I agree with Sheri. And I won the first time I tried. I used Alsup and they did all of the footwork for me. I never could have done it myself, never. I recommend this approach to anyone who asks because it's hellish to not be able to work yet not be able to get disability either. I hope you win your next go-round.

Sheri @osaxy said:

The attorneys get 25% or $6000 of your winnings (back earnings) whichever is less. It is taken from your winnings before you you get paid so you never miss it.
It is nearly impossible to win without a great attorney. My rheumatologist at Stanford recommended the national firm Binder and Binder. I used them and won without going to court at all. They are great and handled everything by phone and mail. Another good national firm to use is Alsup.
Good luck and don't give up. We all get anxiety from the pain alone then add on all the stress from trying to get medical help and many times the OCD can kick in from that. I personally believe those are secondary reactions due to your Lupus and other related illnesses.
Hang on strong and we're here for you!
(((HUGS)))

#13

Thanks! I will.



John “JC” Colyer said:

Ask @ http://www.thedisabilitydigest.com/1A.html, May be they can give advice,can’t hurt to try


#14

Sounds like u got the same judge as me, he chopped it up as me just being fat and lazy and mentally. ill. I am using freedom disability this time and i am getting a new hearing. Do not give up.


#15

Sherry,

I have sjrogrens syndrome and fibromyalgia.I had 1 doctor tell me I have lupus and another doctor tell me I don't have lupus(yet?) I too am looking into disability. I am working full time right now. I am considering asking my boss if I could go part time because I know you can't make over $1000.00 a month. I am sitting here right now, very miserable from achiness and fatigue. Would you please be able to tell me what kind of documents, etc. I need to have in order. TJ, I am praying that the judge approves your disability, in Jesus Name. This prayer is for all of you.

MiMi


#16

Mimi, I can't remember all of it, but you will need your medical records and dates you went to these doctors. If you don't do so already, I recommend using a daily calendar to write down your future dr appts dates and times. It's invaluable. You also need diagnosis given for your illness. If you have fibro, make sure you include it. (I'm not sure but it might be a bit easier to get the disability if fibro is your main problem.) Make sure you include every single dx that relates to your illness, like depression, IBS, mental fatigue, the whole enchilada.

You will also need to tell the disability board what symptoms you have and how they affect you and your day to day life. Can you still put on your clothes without assistance; if not, what modifications are needed to help you, like velcro sneakers, clothes with no buttons, etc, Can you still cook? Clean? If not, list your issues. For me, I can no longer squat or bend down so vacuuming and sweeping are out. (And please note, they want to hear what you cannot do, so be sure to list everything that you can't do. They won't know if you don't tell them. That is about the best piece of advice I heard and I hope you consider it.)

This is why I suggest getting a lawyer. You may think you'll lose a lot of money by getting one but they only charge 1/4 of the settlement fee if you win the case. If you think of the months you lose without pay while waiting for your case to come up again and be appealed...the lawyer ends up being cheaper than the waiting and waiting.

I hope this is helpful to you and you win your case.

Petunia



MiMi said:

Sherry,

I have sjrogrens syndrome and fibromyalgia.I had 1 doctor tell me I have lupus and another doctor tell me I don't have lupus(yet?) I too am looking into disability. I am working full time right now. I am considering asking my boss if I could go part time because I know you can't make over $1000.00 a month. I am sitting here right now, very miserable from achiness and fatigue. Would you please be able to tell me what kind of documents, etc. I need to have in order. TJ, I am praying that the judge approves your disability, in Jesus Name. This prayer is for all of you.

MiMi


#17

Hi and I am so sorry to hear this but agree with the other ladies that having the right attorney is the best thing you can do. One that focuses on SSDI. I used a great one in Chicago where I live but he works all over the country if you need a referral. He is very kind. I didn't even have to go to court. He did enough work on my behalf that the judge looked at the case and notes and decided right there.

Not to say that having disability is winning the lotto, its not enough to live on by far, but it's something :)

Let me know if I can help more.

Xx


#18

I recently found out that I do not have Lupus, but I do have APS/Hughes Syndrome and possible Thyroid problems. I won't be posting here much now that my ANA came back normal. I usually post in the Hughes Syndrome forum these days. I wanted to let you know about my disability hearing. I happened to have a very rude judge and I think he had his mind made up against me before the proceedings even began. He was very pushy with me and didn't allow my lawyer to talk very much.

I have two disabilities. One is severe anxiety and depression, and the other is Post Thrombotic Syndrome - which is known in the SSA listing as Chronic Venous Insufficiency. The judge ruled that my two conditions are severe, but not severe enough to prevent me from retraining for an office job. He said that because I can wash dishes twice a week, and because I go grocery shopping two times a month, and because I participate in leisure activities "I don't even know what that means because I do not participate in any such activities" I am not that bad. He also used one single quote from me where I said that I could return to work if my symptoms improved. My symptoms have not improved in the past three years.

I have multiple DX's of Chronic Venous Insufficiency with complications, but since my leg does not have edema, or an open wound that has not healed in three months, I am not severe enough to meet the listing for CVI. I am in pain and have limited mobility. They ruled that I cannot drive a truck anymore, but they want me to get an office job with no formal education. Their doctor they sent me to said I was severely disabled an could not return to work, even if I were to have 12 months of consecutive treatment. In the end, it all boils down to whatever the judge wants to do. In my case, the judge cherry picked bits and pieces of doctors notes from my file to make his case for denying me.

If your judge denies you then you have to check his ruling for mistakes and appeal to the appeals council, then your case will get a second hearing. Here is a link where you can look up your state, and what judge you had, and you can see his approval rates and any negative information about hm. My judge has negative posts about him not having sympathy or compassion for the mentally ill. I hope you win your case, but if you don't, please appeal and fight for what you're entitled to.

http://www.disabilityjudges.com/state


#19

I really need to file disability too, but my husband is self-employed so I carry the insurance. Plus I dont think we can live on one income. Right now my shoulder is in accute pain. I am going to have a procedure called Shoulder resurfacing . I have been diagnosed with; Lupus, Fibromyalgia, Asthma , severe reflux, sarcardosis of my sinuses. I have had my right hand fused, knee replaced, now I am going to have to have my shoulder resurfaced for the 2nd time. I have 3to4 hand surgeries with screws. I work with prek special need kids. Right now I’m in a lot of pain with my shoulder. How long do you usually have to wait to get disability . How long do you have to be unemployed?
Kim


#20

You can get disability in as little as a few weeks if your case meets all of the listings you need to meet to be considered disabled by the SSA. There is a five step process that they use to determine whether or not you are disabled. Are you having any problems performing you current job? Can your supervisors write a letter for you stating that your work is being affected by your disabilities? I would contact a good disability attorney before you quit your job. You cannot be working when you apply for benefits. Also, if you do not get approved on the first try, you will have to appeal, and then eventually appear before an Administrative Law Judge. The entire process can take up to three years or longer. A good disability attorney will be able to tell you whether or not you have a strong case. The SSA doesn't care how many disabling conditions you have. They want to know how much those conditions prevent you from doing your current job, past jobs, and whether or not it will prevent you from retraining for a new job. If you are over the age of fifty, it is much easier to get disability, because they don't consider individuals over the age of fifty good candidates to retrain for new jobs Here is a link to the five step process that the SSA uses in disability cases. The process is a bit more in depth than the basic guidelines I just posted in that link. You can research some legal websites to find out what kind of medical documentation you need in order to win your case. I hope this helps.

http://www.ssa.gov/dibplan/dqualify5.htm#a0=-1