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» LymeNet Flash » Questions and Discussion » General Support » UPDATE! Finally got my disabiltiy hearing! Advice?

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Author Topic: UPDATE! Finally got my disabiltiy hearing! Advice?
MamaBear11
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I finally got my disability hearing in my state of CT, it's April 24th. I do have a lawyer and we'll be meeting again next Monday the 8th to talk again.

Financially, our little family needs this sooooo badly. I can't work, and can't afford treatment (sick for 16 years) so this is literally a life-or-death situation for us. That might be being a little dramatic, but that's just where my mind is right now.

I have a letter from my neurologist stating that in her medical opinion I am disabled. Does anyone here have any advice or links for me?

Thanks so much!

[ 05-06-2013, 02:56 PM: Message edited by: MamaBear11 ]

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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faithful777
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You need to look like it is the worst day of your life. Do not wear any make up, wear the same clothes you would wear at home. Don't dress up or wear jewelry.

Make sure that if you are in pain, you show it. If you can't sit for long, stand up periodically to show that.

They decide you are disabled based on whether or not you can do a simple job like putting beads on a conveyer belt at a factory. This is a stressful event, but you can get through it.

Good medical records are also key.

Praying you have favor to get a positive response from the judge.

--------------------
Faithful

Just sharing my experience, I am not a doctor.

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MamaBear11
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Makeup? What's that? Lol. On my GOOD days I'm in somewhat-clean sweatpants, t-shirt, no bra, same socks for too many days, haven't showered in 4 or 5 days...

I think I can pull that off on the 24th.

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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lax mom
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You can't maintain concentration, persistence and pace. Meaning for an 8 hr day, 40 hrs/wk you cannot do light sedentary work in any field (not just your former field).

I know I don't have the stamina to dry my hair, so keep that in mind.

If you take meds for ex. anxiety, skip it that day so your anxiety will not be masked.

Don't be calm as can be on the way into the building then freak out in the room. They pay attention to everything.

(Even the workers at the Social Security office make notes of your demeanor when you apply and use it against you)

I hope you get approved.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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MamaBear11
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Excellent advice so far, thank you! This will help me to have a "plan" of sorts (though most of these things I won't have to work to be convincing of anyway) and just having a plan will help me to relax a bit and not be so nervous.

Thanks! And definitely open to more advice!

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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Keebler
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-
Just be honest. What do they need to know to help you? While the honest truth is not always abel to be documents, hopefully (if your atty is LL) you will have all that in order.

You & the attorney will know what the SSA needs to make this work. As far as your presence there, just be honest, be real and be yourself.

Keep going back to that if you feel stress. Just be the yourself, in your body, at this point in time.

It's about them being able to see the situation as it is, the honest truth (even if it is very difficult as I know it is feel so vulerable when being open so that others might actually "see" the situation.

Let them see the reality.

I hope the attorney is lyme literate. Be sure to get the ILADS DVDs from last autumn conference. VERY important to get those if you have not yet. Links are in one of these sets or just go to www.ilads.org

-- look for Boston conference. There were several sessions just about this topic and what the SSA needs to help you with your case.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/13935

Resources for Disability, Insurance, Dealing with HMOs


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/110107

Disability processing issues
-

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MamaBear11
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Thank you, Keebler!

My husband had an interesting question for me earlier: He was planning on going with me to the hearing, especially since it's over an hour drive away. But he wondered if it might be better if he didn't, since his going would show that I have a good support person in him. Does that make any sense? Do you all have any thoughts on that?

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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MamaBear11
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You know, thinking about all of this I've realized that my biggest challenge at this hearing is going to be letting everyone know & see how I really am.

I know for me, and I suspect most of us here, I spend nearly every moment of every day denying how much pain I'm in and how fatigued I am. Hiding it. Pretending I'm fine.

I run into my neighbor outside and she asks how I'm feeling and I just respond, "Oh, I'm okay." or "Just fine, thanks!" It's just so much easier to lie and force a smile than to go into how things really are.

So that is really good stuff for me to think about before my hearing. Thanks everyone for helping me gain that insight!

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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map1131
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My husband went to the hearing with me but the judge refused to let him enter the room.

The lawyer will do the majority of the talking. They will most likely have a doctor present who may ask some questions. Believe me it will be a lyme ignorant doctor, in all probablity.

The judge may ask about your work history prior to illness. There also might be a job advocate who will judge if there are jobs you could do physically or mentally.

The jobs must be equal or similiar to what you were doing before.

Like Keebler said.....just be honest. I did react negatively to the doctor sitting in on my case. He stated that my positive IgM supported a previous infection and I had plenty of abx to take care of that past infection.

I proceeded to tell him he was mis-informed. I told him the majority of long term ill lyme patients have a positive IgM. He discussed this with the judge.

I told the judge I have a written explanation of the Western Blot by a well known lyme specialist and I could back-up my claim against this doctor.

He asked me to fax it to him. I did and he discredited the doctor in my hearing and took the evidence from Dr C on Western Blot as credible evidence.

Best to you MamaBear. It will be stressful no doubt.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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MamaBear11
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Thanks, Pam!!!

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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Lymetoo
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Do you have a letter from any other doctors?? I say get more than ONE!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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quote:
Originally posted by map1131:

He asked me to fax it to him. I did and he discredited the doctor in my hearing and took the evidence from Dr C on Western Blot as credible evidence.


-
LOVE IT!!! [Smile]

Western Blot Explanation
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

--------------------
--Lymetutu--
Opinions, not medical advice!

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MamaBear11
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I have a letter from my Neurologist, but that's it.

I'd like to try to get one from my PCP.....problem is, my PCP left the practice unbeknownst to me and the last time I went I was seen by some other APRN. I can tell she doesn't believe in chronic Lyme, but her last words to me as I left the office were "I know it just sucks for you to have this disabling cfs and fibro..."

She truly seemed to feel bad for me (maybe because I just totally lost it during that apt and dissolved into tears) but I honestly don't know what kind of letter I'd get from her. She really doesn't know me from a hole in the wall.

I suppose it can't hurt to ask for the letter anyway.

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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hopeful4
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This link is from a disability attorney who has articles on how to win your case. I hope you find something here that will be helpful to you. Good luck with everything.

http://www.scottdavispc.com/articles/list

Here is a sample of article titles, and there are more, too:


*Five Reasons Judges Approve Social Security Disability Claims

*How to Prepare for Your Social Security Disability Hearing before an Administrative Law Judge

*Winning Your Social Security Disability Claim: 15 Mistakes You Can't Afford to Make!

*How Does Social Security Define "Disability" Anyway?

*Does having an attorney determine whether you win or lose your Social Security Disability case?

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Lymetoo
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What about your LLMD?

YES.. ask!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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faithful777
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My lawyer didn't do all of the talking because the judge kept asking me questions to see how I would react. That day has to be the best representation of your worst day.

Praying for you!

--------------------
Faithful

Just sharing my experience, I am not a doctor.

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Judie
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Wow, that site that hopeful gave is excellent.

Here's an article called:

How To Talk with Your Physician About Supporting Your Disability Claim

http://www.scottdavispc.com/article/how-to-talk-with-your-physician-about-supporting-your-disability-claim

Get a letter for fibro, CFS etc... from this new PCP. The fact that she believes you on that could work in your favor (the more letters, the better). You can have more than one diagnosis.

The judge will look at EVERYTHING as a whole. When he sees a long list with CFS, Lyme, Fibro etc... it will work for you, not against you.

It might be challenging at this point to get a letter supporting in lyme from a new PCP. Is there any way you can get in touch with your old doc???

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Lymetoo
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up for MamaBear

--------------------
--Lymetutu--
Opinions, not medical advice!

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MamaBear11
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quote:
Originally posted by Judie:
Is there any way you can get in touch with your old doc???

Mmmmm...nope. She's back home in Jamaica or somewhere tropical like that. I'll see what I can do to get a letter from the new PCP. Not much time left, but maybe the lawyer can help me put the pressure on!

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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MamaBear11
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I can't believe I'm coming back to this thread with this update, but here it is:

MY DISABILITY CLAIM WAS APPROVED!!!!!!!!!!!

I'm still in a bit of shock (and I've known for over a week now!).

I don't know when the money starts rolling in, lol. But as soon as it does I can finally start to treat my lyme. 16 years after I was infected, I'm going to finally start on the road to getting better.

Thank you all so much for your invaluable advice and words of support & encouragement. It means so much. THANK YOU!!!

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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BoxerMom
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OMG! Miracle!

So happy for you!!!!

Yaaaaaayyyyyyyyy!!!!!!!!

--------------------
 - Must...find...BRAIN!!!

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lax mom
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Awesome!!!

--------------------
♥ ♥ ♥ ♥ ♥
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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Keebler
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-
What a relief. Good to know. Sadly, the money won't roll in but the back-amount can be a very nice help for treatment.

Just check your bank balance in a few weeks to a couple months. That may be the first "notice" that the processing has taken place.

The "back-amount" I mention below is from the time they determine you disabled until the date approved to receive benefits. IF that all still works as it has in the past.

This is the money that I hope you can protect until you are certain of how to proceed.

I spent too much supportive methods that were very much needed just to literally save my life at the time - but then I ran out when it all took longer than I thought it would.

Also, I recall when I was approved that there was a relief, sure. Then the reality check with how to budget on about 75% less than I would have been earning in a job.

Still, the real reason I'm posting here is that I also recall after the relief, I went though some deep sadness as this was still not what I had wanted - none of us do. But, given the facts, it's good to have some validation that all is not well and that you can draw upon what you paid into this program.

Sadness also came when someone would say that I was "on" disability as "on" makes it sound so slamming. Thinking of it as a "health leave" which I had paid into helped.

Jumping around due to editing but not being able to make seemless segues . . .

All the support methods "said" they would get me well. They did not because they were not specific enough. But I did not know that. Support methods are very important but not if the specifics directly targeting infections in all their forms and cycles - or the basics - are not there.

At least, you have more information than I did at the time and there are some good LL doctors your part of the country.

If you feel some sadness around the reality of this, though, I hope that is fleeting and that you now have some way to find the specifics that you need to get better. Being able to be proactive about treatment options can be freeing.

Do take care.
-

[ 05-06-2013, 05:53 PM: Message edited by: Keebler ]

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Keebler
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-
In addition to finding the best LLMD you can find to figure out the best plans possible, you might want to explore:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

Topic: RIFE Machine - Reference LINKS

LL Naturopathic links here, too.
-

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faithful777
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I waited two years to get it so there was a big chunk of back pay. Unfortunately I had to pay taxes on it for one year and wasn't allowed to income tax average it.

That is what is paying for my treatment.

--------------------
Faithful

Just sharing my experience, I am not a doctor.

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map1131
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Mamabear, let the healing begin. Just be patient.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Judie
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Mamabear - Congratulation X 1000!!!!

Is there anything that you think swayed the hearing in your direction?

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MamaBear11
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Thank you all for the congratulations!

Judie, to answer your question, it appears that it was really just my fibromyalgia and depression diagnoses that won the case for me.

The letter from the judge said something to the effect of "The medical evidence alone is enough to produce a favorable finding...". Lyme wasn't even brought up until the very end of the hearing when my lawyer mentioned that I had seen a Lyme disease specialist whose notes also lend credibility to my claim of symptoms of pain, fatigue, memory problems, etc.

The other thing I want to point out, for others who may come across this thread later, is that I also believe that having letters from my doctors stating their belief that I am disabled due to certain conditions were extremely powerful also.

The judge's decision mentions a letter from my therapist who describes me as severely depressed, and even mentions my obvious physical discomfort as I continuously shift around on her office couch trying to get comfortable.

When I originally filed the SSA sent me to a Psychiatrist on their payroll for an impartial evaluation. He found me to have Major Depressive Disorder based on our little 10 minute chat and his nearly three-page letter was very helpful to my case as well.

I also had a letter from my APRN neurologist (which she had co-signed by the MD in her practice) which states her opinion that I am disabled by my conditions and symptoms. My lawyer also faxed her a "Statement of Ability to do Work-Related Activities" questionnairre which was helpful also.

--------------------
Untreated Lyme for 25+ years.
Two kids, too much pain & fatigue, no hope of ever being able to treat.

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Dogsandcats
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I am so happy for you. It is nice to have all that behind you.

I was surprised this year - I got my "disabled" placard directly from the DMV this year - I didn't have to apply for it. I rarely use it, but nice to have when I do need it.

So if you don't have one - and need one - that might be next on your list.

Again - great news for you.

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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fadingout
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Congratulations. It wasn't the diagnoses, fibromyalgia and depression aren't automatic wins. You had a smart attorney doing a good job by making sure your medical records documented functional limitations. Mine wasn't able to that because he didn't advise me about it before I hired him and it wrecked the first hearing.

Here is the advice I would have given.

quote:
I am disabled with full SSD from bartonella like organism infection (BLO). My symptoms are photophobic headaches, chronic fatigue, anxiety, depression and social phobia.

It took me four years to win SSD. When I first was diagnosed I wans't aware of lyme coinfections and thought it was chronic fatigue. I read about it and quickly figured out the MDs didn't know what was really going on and their treatment wasn't effective. This caused me to go to a holistic MD who was not ILADS trained who put me on the quack Marshall Protocol treatment and dismissed me when it failed and I asked too many questions via the internet.

I continued to search and learned about BLO from Dr. Burrascano's guidelines, articles and ILADS. This site put me in touch with my current MD, a non-ILADS doc who loosely follows their guidelines. In my experience Burrascano's guidelines aren't working for BLO, though they do suppress it temporarily. We have modified the protocol to include a new form of curcumin that seems to be doing the trick.

Regarding disability, I lost the first hearing because the first holistic MD didn't take good notes and didn't do regular functional documentation. Lyme disorders are not recognized impairments that give you an automatic win. Your records have to say labs ordered, have findings substantiating your diagnosis and document limitations throughout your care. So look over your records. If they aren't good you won't win on them, need to get your doctor to start documenting better now and order testing to substantiate a better diagnosis that is a mandatory win.

The only thing that saved me was that I noticed I had problems thinking and asked my counselor if any testing could substantiate it. He recommended a neuropsychological assessment and I was diagnosed with somatoform disorder because I had pain longer than six months. The diability psychiatrist completely ignored this diagnosis because it was a month short on the time and said I was fit to work. My lawyer appealed, submitted the new somatoform diagnosis and it was a mandatory automatic win.

In front of the neuropsychologist I was totally honest and did my best in testing. When I froze during testing I told her so. I also started the session with a handout on BLO from ILADS, wore sunglasses for the light and took breaks. All these things were in my favor. She concluded I really believed I was mentally ill, believing I had pain when I didn't. This is an insulting diagnosis but what do you expect from a medical diagnosis that doesn't believe in intracellular infections? I don't care, I still get my disability check every month.

These judges are very arbitrary and biased. According to my attorney they discriminate against younger people, especially men, because these are more costly to the system in benefits and it is assumed they are lying. At best, they usually give only around a 60% approval rate and they don't care about you in the least. My judge ignored evidence to build a flimsy case against me and gave the holistic MDs opinion no weight despite the US Dept of Education accepting it and fully discharging my student loans.

If you have mental symptoms, get over to a state psychologic testing facility, apply for charity care and get tested. If you've had pain longer than six months hopefully they'll give you a somatoform diagnosis also and you'll get an automatic win.

As for conduct in front of the judge (aka ALJ), remember that everything will be used against you. If you dress too nice, if you sit too long when you say you can't, etc. The judge is observing you and will note findings in the record and use it against you. Also, the judge will try to get you to wreck your own case. For example, a lawyer told me one woman lost when she said she couldn't lift 10 lbs but then said she liked to go bowling as a hobby.

When I lost the first ALJ hearing my attorney appealed the case and presented the new testing evidence. It was another 1-2 years wait. To speed things up I read the SSA website's guidelines and it said that people who threaten suicide or have urgent needs are given priority. I had complained to my counselor that I felt suicidal and so wrote a letter to SSA complaining that I was suicidal and told my physician and counselor this, that the judge was biased because he had ignored evidence and given my MD's opinion no weight (the latter my attorney wrote in his opinion). I referenced the new testing and mentioned that I didn't have health insurance (which was listed as a reason to speed up a case in their guidelines). I sent this letter to my attorney for approval and this sped up the appeal by about six months.

Appeals council sent it back to the same judge and he skipped another hearing and approved it based on the new testing and diagnosis. Magically all of the evidence (letters from friends about my condition, medication history) he ignored the first time suddenly mattered.

It is a difficult system to beat.
Good luck.



[ 05-13-2013, 08:51 AM: Message edited by: fadingout ]

Posts: 57 | From Raleigh, NC | Registered: Jun 2011  |  IP: Logged | Report this post to a Moderator
   

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