Disability

[danelle]

Hi, I had to file for disability a few weeks back d/t my POTS/fibro/CFS/panic attacks/. I am beginning to wonder if it is a losing battle. I just spoke with an attorney's office and they said that because of my age(37) and because I have some education(RN) that it will probably be unlikely that I get it. She said the process WILL take about 3 yrs total before I even get a final answer(because we will have to go to the judge level). I am SOOO discouraged. I know that there is nothing I can do. I can't work and I can barely function at home. I know people say not to give up but there is ABSOLUTELY no way possible for us to survive until then financially. Right now we are living off of money from where we sold my husband's truck. He makes enough to pay the bills but there is not a cent left. Then we still have to buy groceries, gas, necessities, etc. I have only been out of work for a little over a month now and we are having to use more than we can for groceries, etc. the money from the sell of the truck won't even last a year. We aren't blowing anything at all. We are pinching every penny and have cut what bills could be cut.

I feel like I have soooo failed my family and things will only get much worse as time goes on. Oh dear.... Idon't know if my marriage will make it through this or not.

Someone please talk with me, I feel really desperate right now. ANy suggestions?? Thanks for listening.

[danelle]

Forgot to mention:

The attorney's office told me that there is atleast an 18 month wait at this point to get to the judge level, but you can't get to that level without going through the others first>

[POTSHusband]

Hi

I don't have a whole lot of suggestions, but I totally understand. Since my wife hasn't been able to work for the past three years. We are living off of savings from a great job I had two years ago, but that will not last for much longer. Hang in there!! Talk about everything you are feeling with your husband. You're marraige is more important than money issues!

POTSHusband

[Dawg Tired]

Danelle, I know how you feel. My husband was in a plane crash 14 years ago and sustained a head injury. At the time it happened his family was told to apply for SSDi for him. They refused because they had decided that they didn't want what they saw as "welfare". He was able to work part-time at minumum wage jobs starting a couple years after the crash. When I married him 8 years later I suggested that he quit work because he was in constant pain and was having constant fatigue. He stayed home and I suggested to him several times that he go ahead and pursue his SSDI but he refused. When I started getting sick in the spring of 2002 I told him that he really needed to pursue his SSDI because there might come a time when we would lose my income since we couldn't figure out what my problem was and I was slowly sinking. He still refused. Finally on September 11, 2002 I made it to work and he had to come get me less than 2 hours later. That was the last day I worked. On September 16, 2002 we went in at the same time to apply for SSDI. We are still working our way through the system. Luckily we did not have any vehicle payments. The only thing we owed was a house payment and we quickly sold that when we moved back to be closer to family and friends. We are still struggling finalcially; Hubby gets $50 a week preaching at a small church, we get food stamps and Medicaid, every month we have to bum rent money from somebody.

But the moral of the story is: SSDI will NOT look at your case differently 6 months from now if you drop your case and you will have lost 6 months of what could have been your waiting period.

We divested ourselves of everything we had to survive the last 2 years. My husband finally got a hearing in March and we are still waiting for an answer from the judge. My hearing is scheduled for Aug 30.

I waited until I just couldn't function anymore before I quit work and that put me bedridden for several months.

PLEASE - for your family, in the long run - keep up the fight! Just think of where you will be if you wait too long and have to start the whole process over.

[blackwolf]

Don't ever give up. Try looking for your local State Advacacy group. They specialize in helping you get assistance in all fields no matter what your health problem are. NEVER be afraid to ask for help. There are many groups out there to help you. Contact your state congress or senate rep and ask for help. They know most of the state and federal groups. We don't need so much help now, but we still recieve rent assistance and can apply for heating/ electric assistance. And don't let some lawer tell you you can't get help. Another great place to go is your local Vocational Rehab. The can help to do just about anything, if they can't they usually know where to go.

We waited 2 1/2 years to get our SSDI. NEVER GIVE UP.

Keep a positive outlook.

Good Luck, Blackwolf

[Ernie]

Hi Danelle,

I think you should keep on applying because the lawyer is not the one who will make the decision. When I applied all the doctors were telling me I was too young and would be rejected automatically. Guess what! I applied and was accepted the first round. I think what helped is that as my PCP was taking my BP to write it in the medical report I passed out after standing 2 minutes. It was the full seizure syncope and I was not able to stand for an hour. After an hour he helped me get up and I passed out a second time. I ended up staying 3 hours in his office and he walked me back to my car. He wrote everything in the medical report. I could not have been more synchronised!!!!

As for finances, it took 3 years before I got my first check and we had to cut all expenses. We almost lost everything and financial pressure was making me sicker. Now things are settling down.

Good luck.

Ernie

[Brwneyedchica]

I'm so sorry that your going through all this. I really think that you should stick with it and fight for your SSDI. That money is there for a reason, and we all know that you deserve it. You just have to make the judge see that. I've noticed several other people on this forum who have won, it just seems like a long road. You can do it! There is no shame in letting the government help you, especially when you have a valid illness. Check into the State advocacy group as Blackwolf suggested. As for feeling like you failed... Talk with your husband and your family, i'm sure they understand more than you might think. They are the one's who see you sick on a day to day basis. Good luck, I wish you the best! And of course we are all here to listen to you vent on days like this....

[khudsonwv]

first - you might think of getting another lawyer - you need someone to stand up for you. I applied in Jan 2004 and got two denials and saw the judge this tuesday - looks like it went well ( hope hope). I am 35 and have a business degree... just hang in there it will work out - oohh something that helped me - i mailed letters to all of our senators with copies of my medical records/everything about POTS i could find and a letter stating what i had been thru - i also enclosed a picture of my family to make it more personal - my hearing was scheduled within three weeks and i receive letters every few days from my senators giving me updates etc ( election year helps i think).. Good luck - if i can help let me know!!!

[justme]

I talked to several lawyers that wouldn't even take my wife's case because she is 32, but then I found a group of three people who started their own "company" to help people with the claims process. They used to work for the Soc Sec Admin and know the in's and out's. The best part is that they are very understanding of my wife's conditions. If I could have reached through the phone and choked the first lawyer I talked to, I think I would have. And, I'm not that type of person. He said he wouldn't take a case like that unless the person was at least 45. So, what are the others supposed to do? You can't wait or you lose the chance of getting it.

It is a very uphill battle. My wife was denied on her initial attempt (we tried to do it without a lawyer or advocate). They stated that because she could stand and use her arms, she would work. For one, she can't stand very long and if she did anything with her arms (especially reaching above her head), she would pass out.

I think it is fairly normal to get continually rejected. I will keep the forum posted as we move long. It is a very discouraging process, which I think is very, very wrong as most POTS/NCS patients have a hard time coming to the conclusion that they can't work and have already dealt with years of "it's in your head" and the long list of doctors who won't listen.

[morgan617]

i got it on my first try. so it does happen. just make sure your doctors keep really thorough records and send them all. i know how awful it is, i felt like i let everyone down and even tho i got it, i still feel that way often times. but we can't help being sick anymore than we can help having blues eyes or blonde hair. i can't believe anyone can possibly think we WANT to feel this way. hang in there and don't give up. i never saw an attorney at all. so there is always hope. morgan

[danelle]

Morgan,

Did you do anything special?? If you don't mind my asking, did you have many dx or was POTS your main dx?

[morgan617]

danelle, i'm not sure what got it for me. i do have meneires, but that in itself doesn't automatically get it for you. i'm not sure, i did have a list of things but believe most of them are related to oi. what i listed was fms, oi, ist, ablation, hypertension, things like that. but my tests and stuff didn't bear alot out, as regular testing doesn't. so that's why i say don't just give up. when i had my psych eval i was very upfront and told him i was very depressed at this turn of events in my life. but i can't even get into vanderbilt or mayo, so it's like my oi isn't even acknowledged and it seems to be my worst problem. go figure. morgan

[purplefocus]

Danelle,

Of course I know just how you feel. I think you should go ahead and continue with the process of the disability. I applied back in March 2004, I haven't heard a reply yet. I know about all the financial issues. I made twice as much as my husband and now we have lost all of my income and then the COBRA thing is insane. You just have to hang in there. Try to get help from anyone and where ever you can. Just think if that person was in your shoes , would you help them. One good thing is my doctors nurse gives me quiet a bit of medication samples so I don't have to buy some of my medicine. About everything else we just had to cut back drastically. My husband had went from working 8 hours a day to 10 hours and day and he only takes 4 off days a month. I just pray that it is only temporary. We have to stay positive. There are alot of people on here that have recieved these benefits already, it is there for us, we just have to fight for it. Talk with all the creditors, tell them your situation, it might help. I know the frustrations and the helpless feeling but we have to keep our heads up and on those bad days we can come here and be lifted. I wish the best for you. I wished I had a miraclous cure for us all.

Paige

[WifeofPotsMan]

Danelle,

This is really recent for me. My husband was just recently approved after applying in Feb. of last year. My first comment is that I wouldn't listen to that lawyer. You are your own best advocate. If you have a diagnosis, I would think that your chances are much better than my husbands were when he applied. He was only 37 & at the time had NO diagnosis. We just knew that he wasn't going to be able to go back to work. You might want to look at the post about disability that was on this site earlier in May.

Just heard from the disability people

There were a lot of people that wrote in with good information.

In a nutshell - flood your SS office with information on you. Talk with your caseworker on a regular basis. My husband?s caseworker knew nothing about POTS (once we got a diagnosis) and I took the time to explain and answer some of her questions. If you have someone that can do that on your behalf I certainly recommend it. My husband, because of his condition at the time was not able to talk with them (SS caseworkers) not only because he wasn't well, but just the stress of the conversation. Make sure that you paint a person to them instead of being just a number. The very thing that they originally denied my husband on, was the very thing that they ended up granting the disability for - crazy huh?

As to the finance problem, I can certainly relate. My husband made a significant larger amount than I did, so without his income...well you can just guess. We were fortunate in the fact that family brought over groceries, made meals and did what they could. For the rest I used our credit cards. I'm in debt up to my eyeballs, but we did end up receiving the disability & I'm working on a "get out of debt plan". It was there and did help though until we received the disability.

Don't give up.

If I can be of ANY help, please just let me know. I didn't want to write a book, but I will tell you that I did get the disability through on my own. No lawyer and with 2 rejections. It can be done. Let me know if I can help!

[JLB]

Danelle, I wish I had something to add - the others have said it all very well. Especially the fact that in 6 months, you'd only be 6 months later in the process. Try to keep going. Maybe you'll be a success story for someone else in the future.

I have to tell you, the fact that you're still in there fighting says a lot about your character. The money they resist giving out belongs to all of us, and you have a right to it. I hope you keep going.

[WifeofPotsMan]

Sorry...I listed the webpage wrong...here's the correct page on the May disability conversation:

Just heard from the "Disability People"

Thought I'd correct that in case you want to look.

[divine spark]

Danielle,

You talked with the wrong attorney. I went through this too, applied way too late and ended up living on credit cards for a long time.

I have posted ad nauseum on this topic here and at ndrf.org.

If I can help with suggestions, please write me at divinespark@dslextreme.com.

Patti

[friday]

Danelle,

Don't give up. And you didn't fail your family. It's not your fault you got sick. Keep on trying, and maybe that attorney will turn out to be wrong and it will be quicker than you think.

Sue

[danelle]

Thanks for all the support!! I know it is going to be a long road but I will continue to fight. I tried to see what I could do again this weekend and it was virtually nothing!!! Sometimes I just doubt myself I guess, but logically, I know I CAN"T do it. Don't know how many times I have to "show" myself by making my body suffer???

Thanks again,

Danelle

[Dawg Tired]

I know the feeling; as nurses I guess we are so accustomed to being able to "make it all better". But with this stuff, it is especially frustrating because on top of not being able to make it better - no one understands it!

I tried to be a camp nurse a couple weeks ago. I bandaged a dozen skinned knees and other than that I stayed flat on the couch. So much for any kind of a return to normal!