Oh my gosh, what a Thanksgiving! I will ever be so grateful for this decision. They called me today and told me that I am approved for LONG TERM disability - that I willl get it as long as I am ill, and that they understand that I cannot work ANY job. Oh, I am !!SO HAPPY!! to have been granted this, so happy that they understood. And this means that we will not lose the house. They will be paying me 60% of my previous wages, and 70% if I am approved for federal SSDI. I just burst into tears like a baby. This road has really been a hard one. Really hard. I am speachless. I hope that this gives other here hope that this can be won with this illness. I have trigeminal neuropathy, not classic TN, and they understood the distinction. I am speechless with joy. I can't believe that this went right - I have lost both the initial application and the appeal with the fedSSDI, so I felt hopeless that the private one would grant it. I am still waiting for a hearing date for SSDI. For those that don't know what private disability is, it is often bundled with other benefits when you work a corporate job, as was my case. The workplace had terminated me, as they had to, when I couldn't work a modified job. But this is how it is supposed to work, and it did. They give you short term DB for two years, then re-review it, and decide whether you should receive it then for the long term.
Anyway, I am more relieved than I could have imagined.
Oh Lily, I am so pleased for you that they finally woke up and approved you after all this time! I am so glad they understand what it is you must live with now! It must come as such a relief to you!
Your road has not only been hard, but paved with many barriers…I was gonna offer to cover your mortgage ; )
I, too, had long-term private disability insurance. Be advised, that if/when you get accepted for SSDI; your long-term insurance carrier will MOST LIKELY want any and all payments received by you returned.
I had a retro-payment from SSDI of $15,000 and the NEXT DAY, my long-term sent a DEMAND of PAYMENT for $13,700.
Other than that little disclaimer, I am so very happy for you, Lily! bob
Yikes, Bob!!!
Thanks for the heads up on that! The good thing, though if I win SSDI, is that they will up my 60% of wages up to a combined 70%. But also, if I win, the lawyer will want all of the rest of that back-pay, no doubt.
So, both good and bad.
But way better than 0$ by far! Yay!
I can rest much easier now, the dark cloud has drifted away from over my head.
Thanks Kerry, and Nancy, for your sweet words!
Lily
Bob Snodgrass said:
(((Lily)))
Your road has not only been hard, but paved with many barriers...I was gonna offer to cover your mortgage ; )
I, too, had long-term private disability insurance. Be advised, that if/when you get accepted for SSDI; your long-term insurance carrier will MOST LIKELY want any and all payments received by you returned.
I had a retro-payment from SSDI of $15,000 and the NEXT DAY, my long-term sent a DEMAND of PAYMENT for $13,700.
Other than that little disclaimer, I am so very happy for you, Lily! bob
That’s great news Lily!!! So happy for you and know you are relieved. I also have trigeminal neuropathy and am a stay a home mom to 2 little girls - I am so grateful I don’t have to work right now because I know I couldn’t. Your case gives me hope that others start seeing this as the debilitating problem that it is. Hope you are still celebrating your great Thanksgiving news!
Congratulations! You must be overwhelmed with relief!!! Do you mind if I ask what you mean by the insurance company knowing the difference between classic TN and Trigeminal Neuropathy? Would they have not approved you if you had classic TN?
Hi Lily I was reading your post and I am curious to know what your symptoms are . I don t have classic TN , but my pain is constant most of the day. I get pins needle sensations on the left side of my face. I also get a constant ache and prickling sensations. I am happy for you in getting disability . I didn’t even know that was possible because it is very difficult working while in constant pain. I think I will look into it. Sincerely Jeff
Thanks, dear friends…Rae, I’m so glad that you are able to (kind of) set your own schedule/strategy for the day, but I’m sure that it can’t be easy with kids! My gosh!
Hi Debbie, the reason that I say that they knew the difference is because I had a conversation with the analyst that was deciding my case, and had the chance to tell her a bit about the difference between the two, and she clearly understood. The reason that I am so happy about that decision is, that it is the first time that I have read of, anywhere on the forums that I go to, of a person with TN2/ATN/Etc who ha been awarded this. I have corresponded with folks who have TN1 and won awards, but not TN2. So I am thrilled to give hope to those of us who suffer with the equally debilitating neuropathy, who must bear hour upon hour of severe pain. Hope that clarifies what I meant to say :o)
Lily
I managed to make a 30 year tenure at my job and got retirement benefits similar to you, but SS really helped me get what I needed to live a normal life.
As someone who went through the Social Security denial process, I eventually prevailed in getting benefits after a wait of about 2 years. A judge decided in my favor, why I’m not sure but I think the judge was pulled in to help with the backlog of claims, he saw my case and decided immediately. I got a lump sum payment to cover all the months since filing the original SS application, minus the cost of the lawyer I hired (which was pretty much a waste of about $5,800!)…if you can find a good coach, avoid the lawyers.
Every case is different, but don’t give up on your SSDI application…
John,
Thank you for posting :o) My next step is the judge, so it’s great to hear of your success - I have documents from both the neurosurgeon and the neurologist stating that I am debilitated, so I hope that that sways the judge - they totally ignored those documents for my appeal, unbeleivably… It should be coming up soon, so I need to prepare the things that I want the attorney to know. The firm that I am using has won TN cases before, so I feel good about them. They have a 96% success rate, if that means anything. We will certainly see.
Thanks again for the pep talk - it really helps!
Lily
LILY,
I AM SOOOOO HAPPY FOR YOU AND YOUR FAMILY!!! I AM CRYING FOR YOU RIGHT NOW. I’m still waiting for a decision from my employer’s insurance co. after 3 months of waiting.
Oh…I just read further and you don’t have “classic” TN. I’ll look up it up in a minute, but there’s no way with my TN that I can work at all either. My private insurance let me have short-term disability for 3 months and then it has moved into the long-term disability ( I guess timelines are different with various companies) determination mode-but with 3 months of not being paid so far!
Wish me luck; I like my house too.
Lily,
Can you please advise me of what state you’re in? If your attorney handles California, would you please email me!?
I’ve been advised to seek advice.
Thank you!
Dear Andrea,
I live in the Bay Area, I see that you live in South Lake Tahoe - so yes, my lawyer should cover you - they are a large firm located elsewhere, but they have lawyers that cover California. They specifically cover SSDI, not the private disability insurance companies. I have gotten into the habit of forwarding all things that I filled out for the private disability company to these lawyers though, for extra evidence for the federal case. I chose them because I have seen on other forums that they have won TN cases for other people, and they were also recommended by my private disability company. I am confused as to which case you are referring to, for yourself, though - do you want a lawyer to fight for the private claim?
Let me know, and I will send their info to you your private Inbox.
Thank you so much for your kind response to this thread, it really moved me, and let me know if I can help in any way. I DO understand just how debilitated it can make many of us - I envy that some folks can still work, but it must also be so very hard on them, and I know that they do it to feed kids and families, and have no other choice. I feel so strongly for us all, but I remain as positive as I possibly can, in spite of it. I couldn’t handle depression on top of everything else. But I still can’t believe that I now stay at home alone most of the day instead of the career that I used to have - it still blows me away. Anyway, I am rambling…
Lily
Keep in touch :o)
Lily
Andrea Strong said:
Lily, Can you please advise me of what state you're in? If your attorney handles California, would you please email me!? I've been advised to seek advice. Thank you!
Hi Lily,
The fight is with my employer’s private insurance company (SUNLIFE). SSDI hasn’t gotten too far yet and I’m in good hands with an advocate for that portion but it’s the private ins. co. that’s not providing a determination.
My personal email is ■■■■■■■■■■■■■■■■■■■■
Hi Andrea,
I am sorry to say that my lawyers work only to secure SSDI, not the private insurance companies. I have no idea what to do about that. I could check around here in Bay Area for a law group that does this kind of work if you would like me to, but it would be basically running through the yellow pages, and I couldn’t vouch for the level of service that they provide. But I’d be happy to call around for you. It’s not like I have much to do in my life these days :o), and it doesn’t cause me pain to use the phone.
Let me know if I can help.
Lily
Just to update, my hearing for SSDI has been scheduled for February 2. Finally. I'm at the hearing stage because they turned me down at the initial application, and the appeal. This is my last chance. It is such a full time job to be sick - I have never filled out so much paperwork, and supplied so much personal information, in my life.
This is scary. I know that others with TN have won it, so there is precedent. Time to get my act together and figure out what needs to be said. I have a lawyer. I hope that they (the law group) give me a good one. And I hope that the stress of it makes me hurt, so the judge can see just what it does to people. Damn all of those people that tried to play the system before us, who have made it that much harder for the rest of us.
Jusy sharing my thoughts. More to come in the next few months.
I hope that you all have days and days with minimum pain.
Hi Lily, This is my first post on this blog. I had my hearing with a social security judge yesterday. And I won! I have TN Type 1, ATN, bilteral TN and another neuralgia, as yet undiagnosed, that affects my tongue and voice. I was in full pain when I went in, my voice barely worked and I was so nervous. I needn't have been. He asked me if I was filing based on pain. I said yes, pain and the side effects from all the meds. We discussed the meds - neurontin, dilantin, amitryptiline, etc. He asked me "why did you decide to become disabled on your filing date?" I nervously laughed and told him it wasn't like that. I didn't decide to become disabled. I explained that I left work on my filing date. We discussed my 5 procedures I've had since 2003 and the failed results from all of them. He asked if I felt better since leaving work. I said, unfortunately, no. He said, "well, I had already decided you were disabled, so let's just put that on the record." I thanked him probably too many times, and left in absolute shock. It's over! I won! I still can't believe it. (It helped that my private disability had already been approved).
I wish you well, but I hope you can quit worrying.
Jackie
Lily said:
Hi Friends,
Just to update, my hearing for SSDI has been scheduled for February 2. Finally. I'm at the hearing stage because they turned me down at the initial application, and the appeal. This is my last chance. It is such a full time job to be sick - I have never filled out so much paperwork, and supplied so much personal information, in my life.
This is scary. I know that others with TN have won it, so there is precedent. Time to get my act together and figure out what needs to be said. I have a lawyer. I hope that they (the law group) give me a good one. And I hope that the stress of it makes me hurt, so the judge can see just what it does to people. Damn all of those people that tried to play the system before us, who have made it that much harder for the rest of us.
Jusy sharing my thoughts. More to come in the next few months.
I hope that you all have days and days with minimum pain.
I am SO happy for you! Your post brought tears to my eyes! Wow - your fight is finally over - now you can breathe. I will definitely consider the way that you answered your questions - very smart. The consideration that pain is " subjective" just riles me - is that reason enough to deny someone who is disabled by it? I'm so sorry that you were hurting so much as you went to trial, it must have been hard - I hope that it didn't continue to flare badly after you returned home.
Again, I am so very happy for you, and I hope that you are feeling better today. It takes a while to sink in, doesn't it - before you can finally let yourself feel free of apprehension.