I won my disability case, now what?

Previous post(s) here: www.healingwell.com/community/default.aspx?f=24&m=2490734

Ladies, I won!

I started my journey March 2012, and I just got my answer on Friday. Can you believe it took that long? I bet you can.

What is the status of my fellow fibromites who were also fighting the good fight?

And to those who've come out the other side, what's next? Any advice?

Congrats! That is great that your finally going to receive disability. Did you use a lawyer? How many times did it take you? I have disability, but I have a friend looking into it.

All I say is sometimes I have to remind my family that I am disabled and I am not available to do just anything since I don't work. Yes, it's ok to take naps and not feel guilty.

I applied the first time in 2008. Long story short, I wound up dropping my case due to a letter written to SS by my doctor maligning me. He doesn't believe in fibromyalgia. Should have sued the *&#&*(.

I applied for the second time in September 2012. Was denied, got a lawyer, was diagnosed with interstitial cystitis after that, and also had a lot of vein surgeries last year.

At the hearing in November 2013, the judge approved me because of the bad circulation in my legs, fibromyalgia, and my "advanced age" and being so out of shape. He wouldn't go back to July 2012 when I was diagnosed with IC because he said there were medications I could take for that. They also did not take into account depression or anxiety.

My lawyer had told me back in April that I would probably not have a hearing for 1-1/2 years because everything was so backed up, so when I got the notice it was going to be in November, I was really happy. They told me at the hearing that I was going to be approved, but they only approved it back to the first time I saw the vein doctor, which was December 2012, and they don't pay the first six months. I was expecting a 3-4 month wait for a check, and I got the first check in December 2013! Even though it was only for 5 months, it still was a very pleasant shock to get it that quick.

So I started this thread and then had a flareup that kept me away all week. Oops! Sorry about that.

I wanted to make a few notes to those are still fighting the good fight:

1. Get a lawyer for your appeal! I had one appeal from my initial rejection and it was a year from that point. You will learn a lot about how the system works all on your own, but there is a critical point where the lawyer can pick and choose what items will help your case and she will ask the most important questions for you at the hearing. You won't hear much from your lawyer until about 3 months before your hearing, but when you do, you will find she is worth every penny. Mine did all the questioning except for a bit at the end by the judge herself. Do it. Especially if you have a difficult case.

2. My case was extremely difficult. I'm young (38) and have no other medically "provable" illness other than depression/anxiety and ADHD. I won based on Fibromyalgia and Depression. I have a very severe case of fibro and severe clinical depression with anxiety. What I have is very real but does not show up on tests. You guys know what I'm talking about. Some of you may have concurrent illnesses that do show up and are listed with the SSA, and that will help your case a lot, as will being older than 44. (I did have and am still having cardiac issues but those were new and excluded from consideration. Nor did the judge consider my ADHD.) I feel it's very important to mention that I did not work at all in the two years I've been waiting. Don't even ask how I managed it, as I almost didn't, and I owe everyone so much money it made me suicidal for a time. Hopefully you have something to fall back on, but whatever you do know this: not working AT ALL was very crucial to showing the severity of my illnesses. Do not let desperation screw up your case. YOU know you cannot work, so don't even try. It's not fair, but it's the way it works. Not even one dollar. Yes, it's disgusting that that's all it takes. Some day future fibro sufferers will have it easier, but for now we are paving the way. Each case won sets precedent.

3. The judge mentions, and quotes in her writeup, every single person who supported my case. I feel this makes it very important that you have the support of your doctors, and I also included four third-party letters of testimony. I had my primary doc, my rheumatologist, my psychiatrist, and my psychologist all supporting me and talking to each other and to me about my case throughout this last year. It was amazing. I also, on the advice of my lawyer, had four people write letters testifying to my situation: an ex-client from my former business; a friend; a neighbor; and my mom. You can also include a pastor, ex-boss/coworker, etc, someone who knows your daily struggles. Most importantly, everything that the docs and my friends said was CONSISTENT. Dates and activities and areas of limitations/pain/etc were consistent throughout. I made sure of that. I sat with every doc while filling out forms and reviewed and critiqued every third-party letter written to make sure there were no errors. If someone didn't know something, I told them to skip it or write "I don't know" and not to guess. I am very sure this is what won my case. I had had some idea what to ask all of these docs and friends to write about thanks to lots of research and folks here, but it was the lawyer who helped with specific details and pulling everything together. She knew this judge and the court appointed psychologist and the vocational expert and how they worked. Another reason to have a lawyer!

4. My hearing was long. I went all the way to the end. Those of you have actually gotten your dates will start asking about the hearing. The soonest a judge can make a FAVORABLE decision, she will stop proceedings. She will never stop the hearing early for an unfavorable one. That means some of you may be lucky enough to have your hearing canceled the day before or even the morning of because the judge reviewed your case and made a favorable decision. Or the hearing itself may end abruptly after only 20 minutes. Mine went the full excruciating hour. This is not usually a good sign. However, the vocational expert said "no" to all past and future jobs so that was GREAT. You'll hear that guy's opinion near the end. That's the part where the judge may start asking for a list of three jobs you can do. Mine ended at the "no"s, which was the only positive I had at the time. Then I spent four weeks sweating until the letter came with my favorable decision.

What I'm trying to figure out now is whether to try to take SSI for the one month I may have been eligible for it back when I applied. I applied for SSDI and SSI concurrently on the advice of my social worker. The SSI paperwork will hold up things by as much as a month, but I may get an extra month of packbay for my efforts. I was wondering if anyone else did something similar. I should mention that my disability date was determined to be the date I said and not when I applied, which I heard is unusual. I applied late, almost four months after my last day of work. Unfortunately SSI only pays from the time you applied, not the date of disability, so I may only get that one month of backpay that overlaps during the five-month waiting period of SSDI. I get too much SSDI to continue getting SSI after that period (a good problem to have, I know).

Sorry I did not respond to each of you individually! I am reading everyone's responses and am very happy for the company. The stress nearly killed me, for real, during this long wait, and I wanted to reach out and try to give any comfort to those who are where I was. <3

Hi karona,

Congratulations on achieving a herculean task so successfully. What a concise and informative description of your struggles. I am positive your post will help hundreds of others in their difficulties with their applications.

I wish you peace now and hope that your pain diminishes a bit now that the world has been lifted from your shoulders.

Very well done. You are a inspiration. Neenaa

Oh man, congrats! An thank you so much for the detailed description of your process. Being 34 with diagnosed Fibro, anxiety/depression (with panic attack) and ADHD you have given me a lot of hope for the near future.

Can I ask a personal question about the filing and $? Did you have another income? I am wondering if my (god willing) my husbands I come increases to 'somewhat' comfortably manage is both so that I can quit work for the duration that it takes to seem legit. I know for a fact that we can't survive currently which is why I am torturing myself. /-:

Neenaa, herculean is a good description! At times it felt impossible. Thank you for the kind words. I do want to help others who are in the struggle. I was thinking of starting a Disability Thread #4 with my tips at the top since I'm not sure how many folks will find this by the topic I wrote. I was originally looking for help figuring out my SSDI vs. SSI situation but have since found what I was looking for. Not sure how the mods would feel about my reusing a comment for a post, though. Don't want to overstep any bounds. I suppose I could always tell them to delete it if it breaks any rules. I just want to help others. :)

AnnaBananna I had NO INCOME at all. No credit, no savings. I had been stretched for so long due to missing so much work that I was bone dry by then. It was horrifying. I had to borrow borrow borrow from everyone for a very long time. It was humiliating and yet also an amazing experience. People came through. I was very fortunate to have folks who stepped up to the plate for me. I was also surprised. There had been times in the past where I kept trying to work long after I needed to quit because I was petrified that I would sink, lose my house, lose my independence, and then one day quitting became the only option and there I was asking everyone who could afford it (friends) and even those who couldn't (family) to help. And they did. Time and again. I was also on welfare, food stamps, medical assistance, a reduced cost program through my local hospital, and heating assistance, as well as living on the most threadbare of budgets by then. I was even paying my therapist (who was out of network) in coffee thanks to a relative who gets it for free! I know not everyone has these resources available to them, so I do understand when you say you are still trying to work while you hope your husband's income increases. Keep doing the best you can. Surround yourself with supportive people you can cry on when the bad days are so bad you want to die. But hang in there. There is hope. I was 35 when my disability retroactively became "official" (we both know we worked terribly painfully while disabled for so much longer, though) so we are very much in the same boat. Keep me posted! xoxo

I am on my second go round waiting for my time before the judge. I was diagnosed with fibro right before my first hearing, but they threw that doctor's diagnosis and medical records out, ( for whatever reason) and instead went with a docs records that I had only seen a few times. My case was lost. I refiled in April of 2013, and am down to the wire with my LTD company. I may soon be cut off of LTD because they think CFS/fibro a temporary "mental" condition. I wish.

I was diagnosed with this disease again, and he has documented my TBI effectively, so I am hopeful that I am finally approved. I really think that being 46 at the last hearing was a big issue, I am now 48 and have gotten worse in the past few years due to weight gain and an inability to exercise like I once did.

It's really aggravating that it takes this long with a disease this bad. When I was sitting waiting for my court case last time, this man was in the waiting room with me. He had a laundry list of disease's ( high blood pressure, diabetes, neuropathy) and had a cane. I am not belitttling his condition, just bet he had an easier time getting approved than we do. Mainly because I think the general consensus is that we are "putting on" or it's all in our head. In fact, I just quit talking to my younger sister because she pretty much told me that. I rely on karma, and hope hers is fitting.


let's hope those of waiting get approved swiftly.

Once you are over fifty, it's easier to get disability. With fibro,it is tough but not impossible if you have other conditions in addition to fibro ( especially if you are younger than fifty)

Thanks! The docs records they threw out I had seen for three years, was at a prominent research/teaching hospital, I followed all advice. Who knows? I am in Texas.

For some reason I can't read real well this morning. I'm kinda going cross-eyed and feeling buggy. But I wanted to say that my heart breaks for you guys. I know what you are going through. I spent so long in the fearfully-trying-to-work stage and then two years in the waiting-fearfully-while-being-scrutinized-by-everybody stage. My own family still doesn't really get it. Sometimes they do, and sometimes they still say things that are very hurtful, though I think they are trying to "help". I could make a list. You'd recognize most of the items on it.

If you are just starting your case, or if you are already way into it, my advice is the same. Do not switch long time docs (aka "doctor-hop") if you can help it, spend as much time as you can working on your health with your doctor, and make sure to catch all of your doctors up with each other or even ask them to call each other, if you can. I know you can't just magically get your doctor's support, so if that's the case then you'll have to try either a specialist or maybe a different doc in the same practice. It's tricky, I know. I originally did not have every doc on board. It happened slowly over the past two years and when I showed cardiac damage from a reaction to my meds (f$%&ing Cymbalta) that did the trick. For others it may be a different kind of secondary illness. You may also be older and have a better chance just from that. I am young and fairly fit. I don't "look sick".

When I had first applied for disability, I had not seen much of my docs because I couldn't afford health insurance at the time. My records were sparse since my Dx in 2008. Once I quit working and became eligible for medical assistance, I wasted no time seeing all my docs as much as I could. I was motivated because of how lousy I felt, but it also was a huge positive for building my case after my initial rejection. I actually got even sicker, and that really clinched it for me, but I still had negative test results for everything they looked for, and it came down to having consistent documentation of my pain and fatigue and depression with everyone I saw. My psychiatrist knew that I was seeing other docs and what for because I told him every time I saw him, and vice versa.

Very importantly: I had the support of my rheumatologist, and even though I saw him the least(!!), the judge gave him the most weight in my case. What's funny is, the very last time I saw my rheumy, he proceeded to tell me that he thought fibro was caused by depression! I was flabbergasted. (I didn't bother to mention that my depression got worse after my fibro became overwhelming.) Thankfully he took my case seriously and documented my case very well since my Dx in '08, so that is all that mattered. I kept my mouth shut about his theory. His treatment of my fibro was limited due to my extreme reactions to most medications, so he was mostly just monitoring my fibro twice a year anyway. But like I said, the judge gave his opinion a lot of weight, so having him onboard was crucial.

I'm kinda losing my train of thought now so I'm gonna stop there. I am trying to say I understand about important stuff being thrown out and having docs that aren't helping, but I'm not sure if that came across. When I started my disability application, my old favorite doc had left his practice and I had to start all over with a new guy. I hadn't been able to afford to see any of my docs in almost two years. The new doc sent me to physical therapy and probably thought I was a hypochondriac with my laundry list of symptoms. It was supremely frustrating and I felt like I had no chance. Of course in the two years it took to build my case, I built a solid rapport with the new guy and the others and he is now the glue that holds them and me all together.

This can be you, but it requires a lot of doc visits, a lot of diligence. I was desperate with pain and fatigue, and had the medical assistance, so I kept going and kept pushing. I'm still going, and still pushing. I'm thinking that may be helpful to you with your case if you are persistent and consistent with your symptoms. Tell your psychiatrist about your rheumatologist. I found out mine were golf buddies that way!

And yes, there are other folks with "easy" diagnoses who get disability right away, but that's not us. I agree it's not fair. But do what you need to as best you can, and come here for support. We will never tell you it's all in your head. <3

CONGRATULATIONS PLUMERIA!!!! I am SO HAPPY for you! YAY!!

Plumeria said...
have family member help you ..this shows you need help with computer and thought process......go to Ssi office ...(make an appt.) bring your friend to meeting as you need help with memory ....bring all you paperwork including all medical records (make copies at home for your file) they will keep copies.....dress well but don't over due it

YES YES! This is the same advice I got, too, but forgot to mention! Excellent advice Plumeria. My neighbor had to help me with paperwork because I was foggy all the time, so she mentioned in it in her support letter, and I mentioned it in my Function Report. I had problems sitting in a car for long so a friend drove me to my hearing. I was advised the judge could ask, "How did you get here?" I was told to dress "comfortable but not sloppy". I hadn't worried about an outfit so much since my very first date! The same goes for grocery trips and doc appts, etc. I like Plumeria's idea of going top to bottom and connecting every symptom with it's disabling effect. And make sure the docs have version of it in their records somewhere as backup, if you can.

Great news to wake up to. :)