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SSDI hearing decision

Guest tearose

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Guest tearose

My SSDI hearing decision came today. Denied. I am crushed and in tears. We needed that coverage. I am a mess right now. I always thought that things would work out. How am I going to turn this around? Because I tried to work after having improvement in my symptoms, the judge declared there was "some job in the national economy that I could have done". Fact is that I was only able to work about 18 weeks part time and then came the biggest "CRASH" ever! She (the judge) didn't see to even consider the consequences of my "honorable actions"! Now I am angry at myself because I pushed due to a doctor who thought I was "all better" and maybe just "deconditoned or depressed". I said I could not sustain activities like before I had POTS! I did not honor my inner voice which was trying to tell me to ignore him and to stay home and continue to take things slow.

I keep trying to figure out if I was motivated by the money, but I wasn't!!! We all benefit from an income but this was a larger issue! This was a real war raging in me...

I wanted to PROVE something. What the bleep was I trying to prove? And to whom, this doctor? That my POTS was gone for good? That I was healed? That I was not depressed? or deconditoned?

What a very large price I have paid. Not only did I crash back then, but now that work attempt disqualifies me from SSDI benefits.

So, I am in pain, emotionally, spiritually and financially.

If I could only see what gift or quality I have that would help me find gainful employment...

Oh, what is the universe trying to tell me? OH, ****!

I try so hard, we all do... What am I not doing right? What am I not getting? How can I manage my POTS and now find a way to earn money?

This is so difficult. Like many of you, I had lead such a vibrant and active life. Now I am in tears and my heart actually is aching.

I don't want to dwell on the person I was. I don't want to say "what if". I don't have the energy to mourn the old me anymore....finished that.

I need a vision. I need spiritual strength. What am I suppose to do now?

I hope I do not burden you dear reader. I know you may also be in your own place of **** or pain right now. If so, please just cry with me.

If there is anyone out there or "up" there, some grace and strength and a clue as to what to do would be appreciated.


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Tearose, I do cry with and for you. :(:(:lol: This is such a tragedy. I feel your pain. I am too trying to get my SSDI. I am at the reconsideration phase, awaiting an answer. I have often thought myself to "just try it one more time" you can go back to work, knowing I can't even get around the house much less work but I completely and totally understand where you are coming from. So much of what you said I could repeat word for word. I haven't tried the working thing(because I can't even drive or "take care of myself" at this point-BUT I know exactly why you did try) but talking about your "prior" life and all that has been lost, not knowing where to go-financially, physically, spiritually, etc.

I do still mourn the old me but I am getting better with it(I think). I don't wonder "why me" anymore. I just wonder what it is that I am supposed to learn or do from this lesson God has given me. I can say that after reading your post I am more determined than ever to get the word-or better yet - the EDUCATION that people, drs, nurses, psychiatrists, psychologists, JUDGES, attorneys, etc about POTS and dysautonomia and how it can affect EVERY part of a person's being-not only physically but emotionally as well. Heck, people with JUST one ailment can get disability. BUt those of us with POTS that affects everything from our head to our toes-can't get it. People just don't understand and I am sick and tired of their IGNORANCE. Many times when you try to educate them they don't want to learn......................

I thank you so much for your post. I know now not to get too discouraged and "try" and work which would be a disaster on day one before my shift even started. I am just so sorry that you have to suffer for trying to be honorable, and independent. That to me should say a heck of alot to the judge. What a screwed up system we live in. So screwed up.

I could go on and on but I will stop for now. I have no words of wisdom for you. I wish I did. Just know that you have others that are thinking about you and praying for you. My heart does go out for you. Can you appeal the hearing and get another one or do you have to start all over again? Can your attorney fight like **** to explain why you tried to work instead of just (what they would consider-giving up)?

Please hang in there and keep talking to you. Feel free to email me personally if you want. Once again, I am SSOOOOOOOOOOOOOOOOOOOOOOO sorry.

Much cyber hugs, thoughts and prayers,


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Guest tearose

Thanks Steph, It really was the last step. I must let go now.

I was letting off a lot of steam but hey, there are those moments...

I need to have help figuring what I can do as a flexible, part time, as energy points permit, job.

Any suggestions?

Thank you for reminding me about the person from ndrf. See, none of us is alone. Thank you for reminding me that sometimes, just being there for another helps us too!

starting to breathe again...tearose

I just saw your post Danelle...thank you for understanding...

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Oh, Tearose! I am so sorry that this has happened. I don't have any words of wisdom to share, so I will share in your heartache. I know there is a plan out there for you, and I know you will find your way to it. I just hope we can help a bit in your journey. I am in a somewhat similar situation, and for now, I have started making jewellery ( this is something I can do sitting down and at home) and selling in various places. I had no experience with this, and it wasn't something I would have ever thought of trying, but it seems to be a good first step, and has given me a purpose. You have done so much for everyone here, I hope we can help you as much as you've helped us. xo Laura!

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Hi tearose - I feel so badly for you..I went rhough the whole SSD process year ago, and it was SO stressful and painful..I did win once I allealed to the administrative Law Judge.. I am not sure which step you take after that but KEEP fighting!!!! Maybe you can consult with a lawyer about your next step..you deserve benefits so please keep fighting any way you can for them.

My husband is a police officer and it inferiates him the amount of people he pulls over on SSD who are perfectly fine like drug addicts.......

As far as feeling like you dont know what will come to you that you will be well enough to do, I believe God DOES have a plan for you.

Maybe you could look into online education? Its a thought.

But believe me it will all work out in the end. You might find yourself in a whole new profession years from now b/c of your experiences.

Hang in there

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Guest Julia59


I wish there was some way I could help you. SSDI encourages people to work and even helps them get back there. After a person gets approved, and when they are ready to go back to work, SSDI helps them! You tried to do the right thing---you thought. And now they punish you for that---it's just not fair!

That fact that you tried to work and couldn't handle the demands should be proof enough for them. I tried to look for part time job, but I was slurring my speech during the interviews, and I also had trouble remembering what I said. I knew I was not ready to work, but I felt so pressured. I was partly to blame, because I was so used to contributing to our finances, and I liked feeling productive in my job.

I should have realized I was fooling myself by trying to go back to work. There must have been a reason no one would hire me. I did come close twice, and it was down to two people on a couple of job's I intervied for. Both times the other person got the job. And the last job I applied for was a job that would have understood my situation, and they said I pretty much had the job becuase the Doctor was and old neighbor of mine. Well that didn't work out eaither.

It was all probablty for the best---as in the back of my mind I knew I couldn't handle going back to work. It was a very difficult decision to file for SSDI as i'm sure it was for you, because i'm sure you wanted to go back to work more then anything. But then your body wouldn't let you. There would be no quality of life---all your energy and strength would be taken for a part time job. These are all thoughts that go through your mind.

I involved my congresswoman by writing her a letter. Fortunately she responded the very next day. It was a blessing that I never expected so quickly. She is a compassionate and loyal to her people. My SSDI claim is now flagged with congressional interest. But I can still be denied----no doubt to that. SSDI is just plain hard to get. I just had to go to their SSDI Doc on the 12th. I don't really know what he thinks----because I looked fine when I went. My BP was fine both standing and sitting. I told him it takes a while for mine to drop, and said most of my issues come with exertion. I appeared to be a healthy individual.

I only did poorly on part of the neuro exam-----so who knows. He probably thought I was faking that. This Doc could be the one that gets me denied.

There is nothing else you can do? I'm sorry for jabbering, but I wanted to let you know I know how you feel on the working issue. You want to work, but your body can't do it. I don't know of any employers who will hire a person, and let them rest when ever they need it due to a chronic illness.

My heart goes out to you. Your too sweet of a person to have to deal with such terrible news. I wish there was somthing I could do to help. The only thing I can think of is to write to whomever will give you the help you need---maybe starting with your congress person---and then go from there. It's also very important to have supportive doctors who will fill out functional capacity forms showing your limits. On the SSDI web site there is a booklet that shows what a doctor needs to do. Here is the link:


This might help give you an idea of what the disability determination office looks for as far as medical evidence.

I'm praying for things to get better for you. I wish I could have better words of comfort.

Hang on---things will get better,

Julie :0)

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I'm so sorry about your news. I understand the trying to go back part time and it not working . I also quit and tried to go back very part time and couldn't handle it. My body is telling me that I can't work right now.

Is this your first denial letter? Remember most people are denied SSDI at least once. I was denied the first time, I got an attorney who specialized in disablity and I finally got approved the second time. I couldn't have done it without his help. I cried and felt so helpless and angry at the system until I got approved. It seemed really unfair that I was being denied after putting into the system for over 20 years.

Hang in there. Somehow it will all work out. Get an attorney and keep trying. You'll get it eventually.


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Guest tearose

hi gang, Im so funky right now, sometimes I get teary and sometimes I can distract myself...

to answer a few of your questions...I had two denials before I had this hearing. The first was denied because they didn't have the reports from the doctors. The second was denied because they said that I didn't have a listed disability...this time, the judge actually said she clearly had enough to say I am now disabled but there is insufficient reports from the time of my "work attempt". See, my dear friends, I am really good at getting out there and trying to tough it out, but I never in all my dreams thought that the trying would ever backfire!! This judge did not hear/care/listen to the facts that I wound up in the hospital and worse than ever! She just went "by the book formula." I was in the job force for more than a "normal disabled" person! Is this just unbelievable? I burned my own bridge by trying just once more to work!

Anyway, I am trying to work on this problem from several levels, you know how I get all philosophical and stuff... :lol:

I'm just sharing with you what is going on in my brain, body and soul...so put on your seatbelts:

First, In my brain, the intellectual problem solving going on...IF this attorney, who is super, is willing to take it on to appeal, than I agree, I should go ahead. You made me smile -steph and folks I imagined... 10 years from now, with my pots tote bag and seat cane trying to go up the stairs to the United States Supreme Court for "tearose vs. Social Security Administration". I've gone this far, you all have explained to me that I owe it to myself to continue. Now I see that this is important. I am already found to be disabled. This is really an issue of being "guilty of trying to work".

Second, my body needs activity. I must address a way to be active that does not bring on a cascade of problems. Maybe I need to use an agency like VESID that helps people with disabilities find work. I need to re-think this. I know I want to give back to others, there has to be a way to do this in my own time when I can...I must process this.

Third, my soul/spiritual self is wounded. I must realize that I made a mistake and learn from this. I should never have pushed that hard to prove anything to anybody!! I must follow my own advice now and be gentle with myself...even though I have paid a price, if I learn from this it is all worthwhile. Easier said than done. Why do I repeat some of these same issues? Because they have not been learned yet. So a very deep question is...while I attempt to deal with an appeal, how will I make peace with my need to be active and earn money?

Deeper still..

There is another thing. Maybe this is the hardest...What if I really am meant to work? Maybe this lesson is about rising up out of those ashes once again and creating something so new and different that I can't even imagine it right now.

I am so comforted knowing you all are there, I shared a lot, hope you didn't mind.

Can you see something that eludes me?

Now I'm just processing it all...

Sigh, tearose

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Tearose, I am so sorry for you. I join my fellow POTS team in my wishes and support.

I know how important SSDI is--I really do, trust me. Here is some advice/questions--did you have an attorney represent you? why were your medical records after your work attempt not included? how long did your work attempt last? file for an appeal...or else, file a whole new claim and use the date you last worked (the very last time) as your start for disability and be sure you have complete medical records included.

I probably have said too much for my own good. Goldicedance

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Dearest Tearose,

There is so much good advice here about SSDI next steps, that I could add nothing to the wisdom already shared. I hear your heart's cry for answers ... and I hear your mind trying to blame youself for 'if only I had done things differently...'

Remember sweet-rose that all of the 'thinking' takes us further away from just being ... right now ... in this moment. My deep sense is that the answers you are seeking will come from a silent stillness deep inside of you.

I see you as the phoenix rising from the pots ashes ... surrounded by and giving out loving kindness and compassion. Trust that you have all that you need to make this journey.

Good thoughts your way on this incredible healing journey.


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Oh Tearose I'm so sorry you are down because of this. I'm just starting my journey with SSI and SSDI so don't know much about it but I do know that you are so sweet and caring to those of us here that I hate for you to suffer like this.

In my state there's a government program call vocational rehabilatation. When you have a disability they work with you to find a job that you are capable of doing...does your state have anything like that? It may be worth looking into as they also will pay for some schooling.

Otherwise I have been going to school online with the University of Phoenix but it's expensive and I've had to quit for now since I've been so bad I can't keep up.

My thoughts and prayer are with you and I wish you the best and know if you keep on keeping on you'll come out on top! :lol:

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Guest Mary from OH


First off, I love you and am sending BIG cyber HUGS!! Secondly, most of what I say today will be gibberish. (bad night last night).


And the ALJ told you what you need!! medical evidence from your last work attempt. You know these #@#$$# buracracies. She HAD to go "by the book". You had PERFECT evidence up until then. But, like you said you tried (which is a good thing!) to give it one last shot, and FAILED, mind you, to work. Now you need supporting medical evidence as to WHY you couldn't work. Yeah, I know, you gave them tons of it. But, that was BEFORE you tried it again. I know it's stupid.

Talk to your lawyer, talk to your drs again, talk to your politicians and get your SSDI!!! YOU CAN DO IT!! We'll all be your cheerleaders, I PROMISE!!!

I love you!!! And I'm sorry SSDI *****!!



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Hi Tearose,

I am so sorry for your denial. You surely don't deserve to be treated like that. You are such a generous, compassionate and honest person.

I would appeal again and never give up.

Have you considered that if you try to work again you will prove them right, ie that you can work. They already acknowledged that you are disabled and they rejected your claim on a "technicality".

I don't know the American laws but I think it would be good to talk to your lawyer about it and find a strategy.

I think you have every right to post about your concerns, especially because you are always there for us.



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I'm so sorry!

I can't believe the continual **** we go through, as if the illness isn't enough. Why does it have to be like this for the chronically ill and needy people?

Forgive me for repeating anything and ignore things you have already answered as I didn't have time to read the other responses but wanted to send this off really quick.

I'm not too familiar with your case but I'm wondering how many times you've filed for disability? I hope that you don't give up but rather pick yourself up, brush yourself off and try again. I have been told by people with other chronic illness diagnosises that they have to try multiple times before their claim will go through. I know you were counting on this but I'm hoping that you'll keep on it.

I hope that you write that jerk off doctor a piece of your mind and tell him what he has cost you. Maybe you should threaten to sue him for telling you that you were well and you weren't.

Why does life have to be so difficult at times? I know you will persevere!


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Guest tearose

I hear you all saying try again...I am just so weary and really need the coverage already! Well, I am combining all the suggestions and you seem to say, get my lawyer to file and appeal and to eek out a bit more perseverance to write a letter to my congressperson.

I know it may all come down to a technicality but at least I will know I tried everything. Isn't is amazing that because I tried to work I am penalized?

Goldie, we can't use a new date because then I don't have enough time in the system. Thank you for the suggestion.

Martha, You got it! The judge didn't think or care to know the consequences of my try at work, she just went by the book.

Laura, Denelle, Jenn, thanks for the ideas, and support. There must be something I can do from home. I just can see it yet.

Julie, thank you for getting deep into this with me, I hear you and sure appreciate you.

Ernie, I am using a lawyer and appreciate your support! Don't worry, I could only work about 4 hours a week anyway and it would not be enough to hurt my appeal. Fact is, I can hardly take care of me and my home on a daily basis! Yes, it is all documented too.

dream02, please learn from me and do not burn any bridges...I will look into the vocational rehab organization called "vesid" to see what they can offer. Just be sure you have a keen sense of what you can and can't do.

Mary, I needed those hugs and love. Okay, okay, I'll push the reams of paper a little more. I have been trying for years, what is a few more? Any job ideas that I can do at home?

Briar/steph, In my mind I see myself reaching to slap that doctor in the face and then some deep spiritual wisdom makes me stop. It is a struggle. I think life is hard because we have to learn hard lessons. I wish we had the instruction book!

Earthmother, yes dear sister, I know it is all there...why do the answers elude us? What am I not seeing? I will let is go very soon and trust that the answer will reveal itself. I'm just stuck in the disappointment. I am torn between understanding this as an expectation that was unreasonable or a gift for something in the future...maybe one in the same? I'm trying to let go. In those moments I do let go I feel that there is something better out there. Somewhere.

I pulled up a picture of a phoenix rising...thank you for that image.

So, this is life with dysautonomia!

I am still dealing with the disappointment and figuring it all out but want to say once again what a beautiful bouquet of friends you all are!

Your outpouring of prayers, encouragement and comments have been incredible!

I feel less weak than yesterday, tearose

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Guest Mary from OH


Just DON"T do anything that is traceable that SSDI can find out about (work) or it will work against you!! Even when you talk about "hobbies" that you do, someimes they will even use that against you saying that if you're able to "sit" and do that "meaningful" task for that length of time you can be a contributing member of society. What they don't realize is that we only do things for short periods, lay down, short periods, etc....

Talk to your lawyer and be careful what you "volunteer". And don't "try" to work again. I know it sounds dumb. But, in order to win your case, it's what's necessary.

You are an angel.

I'm glad you're feeling a little more optimistic today. Good things WILL happen, I promise. Take care of yourself.


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boy, those things make me so mad (and sad). I've been denied as well (I'm not in your country) but took a lawyer and was approved the second time. This was 1,5 years ago and they still owe me money. BUT I feel so much for you because you TRIED to work and now you're punished for that. That really makes me soo mad. And talking about qualities, you have so much qualities (maybe nor for working, but definately for helping people!), you're such a warm, sweet and caring person.

I wasn't able to read all the advises you got but want to give you my advise as well: try again, because you deserve it. I know this will cost a lot of energy and tears and everything, but I think it's worth it. Keep your head up Tearose, we're all behind you!!!


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Guest tearose

Just to followup:

I am waiting to hear from the lawyer to tell me if he thinks we should file an appeal. I am out of steam and trust his judgment. It comes down a "point of law" and it feels bigger than me now.

When I became disabled, the technology did not exist to diagnose dysautonomia. I was only most accurately diagnosed in 2002 at Mayo, MN. Although this judges unfavorable decision due to her lack of real examination of my evidence is going to contribute a major financial burden, I refuse to let it crush my spirit!

...I continue to look for some good or blessing to come out of this.

I'm still looking... I'll let you know what develops.

Thank you for your words of comfort too, Katherine, Corina and Mary.

thank you all,


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Tea, I just signed on for the first time in days and saw this thread ... I haven't read all the posts, but I just wanted to say how sorry I am that this hasn't YET worked out the way you want it to. Keep the faith, doll--something good will come of this because you will make sure that it does. That's the kind of beautiful person you are. As you would advise, do something for now that is soothing to your spirit--whether that means a warm bath or dining by candlelight or baking challah on a Tuesday.

Take care, OK?


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Maybe this lesson is about rising up out of those ashes once again and creating something so new and different that I can't even imagine it right now.

Hi, Tearose. What a horrible decision that judge made. I can't tell you how ticked off this makes me, and how sorry I am for what she did.

I've noticed, though, that you are a gifted writer. Have you considered putting your experiences into a book which could help - immeasurably - people like us?

Just a thought. If you ever decide to pen your story, and there's anything I can do to assist - share my own experiences, proofread, whatever - let me know. I'm sure lots of people here would feel the same way...

Hug for you -


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Evening, Tea! (pun intended)

What a horrible time for you! You are so full of life and joy and compassion... I just want to scream at those who have hurt you, including our lovely SS system.

I can't offer advice as I may also face the same challenges. I agree with JBL... yes, yes, Tearose, write a book! :o

Ok, since you always brighten our days and bring some humor to the forum, I pulled out a coffee table book my mom gave me a few months ago. She inscribed it, "For those days when there's not much to smile about." It's called, "Furry Logic: a Guide to Life's Little Challenges." You'll have to imagine the animal drawings.

I try to take one day at a time, but sometimes several days attack me at once. (tree frog dangling from blade of grass)

Never go to bed mad--stay up and fight! (two bluejays)

No day is so bad that it can't be fixed with a nap. (shrew curled up napping)

If at first you don't succeed, swallow all the evidence. (bull frog)

I am NOT tense. Just terribly, terribly alert. (prairie dog)

Life is full of challenge and frustration, but sooner or later you'll find the hairstyle you like. (green bird with wild feathers spiked on it's head?)

Be yourself. Nobody is better qualified. (dodo bird)

Too much of a good thing can be wonderful. (two penguins snuggling)

The trouble with work is... it's so daily. (sparrow building nest)

No one is listening until you make a mistake. (baboon)

I never made Who's Who, but I'm featured in What's That. (some kind of bird, my daughter and I couldn't figure it out, rhea? ostrich?)

If you can keep your head when all about you are losing theirs--It's quite possible you haven't grasped the situation. (llama)

All power corrupts. Absolute power is kinda neat. (smiling lion)

That's all for now. I'll save the rest for another time. Hope you find new strength and direction, Tearose!


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