Wellness

[Jova]

One more thing, which you may already know is that SSDI is retroactive. That money can be very helpful with expenses.

[betteb]

On 12/20/2014 Ford1224 said:

On 12/20/2014 betteb said:

This is what the CDC now says about Post Treatment Lyme Disease Syndrome.

http://www.cdc.gov/lyme/postLDS/

This pretty clearly says it is a recognized illness. Maybe referring to it by it's clinical name would help when dealing with doctors, lawyers and SS.

Thank you, betteb. I believe she is aware of this article, and the name that the CDC is now calling it. However, I think they are still researching a "vaccine" rather than a "cure," and obviously a vaccine is too late for her. I did forward this to her today though. Thank you again. Everything helps.

It does say that right now, not much can be done, other than treat the symptoms.

Something another poster said, "you can never work again" is not true about SSDI. It is that your disability is expected to last more than 1 year. I helped someone get it while taking cancer treatments and that is the way it was presented to SS, because cancer docs don't like to say that the disease will eventually end in death. The Dr told SS that the ongoing treatment would disable him.

[LilacTree]

On 12/20/2014 kcubed said:

If she has worked over 30 years, could she possibly retire? What profession was she in before her illness? Will she draw a pension when she retires? If so, that may be more money than she will get from SS.

She has been working since she graduated high school in salons as a hair stylist. She cuts and blow dries only and always has, but still surrounded by chemicals which her doctors have told her she can never put herself in that environment again. She is 50 now, next month will be 51. She has no other skills, such as any type of sit-down type job. And her brain fog symptoms dictate that it would be hard for her to learn anything new, let alone that anyone would hire someone that age in a new profession.

No pension, no 401k, no . . . nothing like that. She was always at the top of the game in a low paying profession. Her tips were always high, but still not enough to support herself after she had two children. Salons, like restaurants, get away with a lot. There's a lot to her story that I don't want to repeat here. She will always need help, perhaps from her children once they are out of college. But right now it's us, and right now it's her health above all else.

[LilacTree]

On 12/20/2014 Jova said:

Your daughter may get a decent amount of money from SSDI monthly since she did work 30 years. The fact that she has worked so many years may be viewed very favorably. Even if you do get denied the first time, fight it. That is how I helped a family member win SSDI, we didn't give up because we knew they could absolutely could never work again.

This is a draining process, so be prepared. Be prepared to be denied and have to appeal.

Make sure all your daughter's documentation is filled out accurately.

We have heard this. The attorney came right out and told her (exact words) "Social Security is not your friend."

[Jova]

Something another poster said, "you can never work again" is not true about SSDI.

I should have phrased that better! You can go back to work again if you get better, but you can't work part time and collect SSDI or SSI, and many people can never work again that apply for it.

Make sure you are very organized with all of the paperwork and documents you need. I would say dedicate a file drawer for the SSDI process. If your daughter is in a mental fog, make sure that goes on the report for SSDI. It means she cannot function at any job. You may need to put it in better terms though, like she is extremely lethargic most days and has cognitive impairment.

[LilacTree]

On 12/20/2014 Jova said:

Something another poster said, "you can never work again" is not true about SSDI.

I should have phrased that better! You can go back to work again if you get better, but you can't work part time and collect SSDI or SSI, and many people can never work again that apply for it.

Make sure you are very organized with all of the paperwork and documents you need. I would say dedicate a file drawer for the SSDI process. If your daughter is in a mental fog, make sure that goes on the report for SSDI. It means she cannot function at any job. You may need to put it in better terms though, like she is extremely lethargic most days and has cognitive impairment.

Thanks again, Jova. We both have copies of everything and she keeps me well informed on what is going on. Some days she won't (can't) even talk, she is so deeply depressed and in a funk. She has very strange symptoms. And she gets told all the time that she needs meds for depression. She took antidepressants for years throughout her marriage, and they only made her worse. She hates them. At one point her "psychiatrist" had her on three different antidepressants.

As most people with autoimmune diseases will tell you, "I'm depressed because I am sick, I am not sick because I'm depressed." But it falls on deaf ears.

Frankly, I believe we are in an epidemic of autoimmune illnesses, mostly borne by women, and no one knows why. One of my other daughters is an IT who works in five different hospitals every day. One of her friends is an ER doc whose wife has "something," they don't know what. He has admitted to my daughter that he does not know what she has or how to treat her. She, also, is extremely ill and only in her 30s.

[scotnovel]

Two friends of mine applied, and were approved, but their experiences were very different.

One, after 2 bouts of stomach and esophageal cancer, and a poor prognosis was approved within a couple of months (in late 50's) without using any attorney. At age 63 he had another bout of cancer but is still hanging there and is doing much better than expected.

The other friend (59ish when applied) has multiple chronic issues, including fibromyalgia which is not recognized by all physicians, but nothing with a critical prognosis. She used an attorney and it took about 2 years before she was approved.

[Gokat]

I've been through the whole process with an attorney...and had to appeal. The attorney actually only acted as a go-between to SSD, and I was ultimately responsible for the award when I was asked to write a letter to the JUDGE and he approved the case.

Even with an attorney, I had to do all the organizing of my medical records and fill out all the forms...and with my disability that was no easy feat. To be honest, unless your daughter can line up with an attorney that's been successful with her exact diagnosis, I don't see the point.

There's a reason why your daughter's attorney did such a turn-around and kissed her derriere...It's the 25 per cent fee he's charging from what she's initially rewarded!! He can be very friendly now.

If you are in a position to do this on line, I'd recommend it. That was not available to me at the time or I would have. You'll have much better control over what's submitted and know where things stand as they proceed. No one knows her case as she does.

Your daughter is very fortunate to have you and her family supporting her. My heart aches for you all, and I hope you can work through the process together for a timely and positive outcome.

[NYwoman]

To get SSD/I you must be able to prove that you cannot work a substantially gainful job for more than 1 year. You can be treatable and can be curable.

The SSA Blue Book determines the conditions that can be considered as disabling. They use doctors' tests, records, diagnoses as the determining facts. You MUST go to a Lyme Disease or Infectious Disease specialist. Lyme can lead to Hep C, so look into that, also.

I have seen SSA grant disability to a Lyme victim but he went blind from it.

A good reference for an attorney who specializes in SSD/I is an organization called NOSSCR. Look them up. There are good and bad attorneys in all areas. This case can be a hard case to win and some attorneys may not take it as they get paid if they win. It is also time consuming. A client's cooperation and willingness to work to win the case is key.

Some Lyme cases are not completely disabling or will be disabling for a lifetime. Realistic expectations and a desire to live with and overcome the symptoms is important.

[LilacTree]

On 12/20/2014 gokat said:

I've been through the whole process with an attorney...and had to appeal. The attorney actually only acted as a go-between to SSD, and I was ultimately responsible for the award when I was asked to write a letter to the JUDGE and he approved the case.

Even with an attorney, I had to do all the organizing of my medical records and fill out all the forms...and with my disability that was no easy feat. To be honest, unless your daughter can line up with an attorney that's been successful with her exact diagnosis, I don't see the point.

There's a reason why your daughter's attorney did such a turn-around and kissed her derriere...It's the 25 per cent fee he's charging from what she's initially rewarded!! He can be very friendly now.

If you are in a position to do this on line, I'd recommend it. That was not available to me at the time or I would have. You'll have much better control over what's submitted and know where things stand as they proceed. No one knows her case as she does.

Your daughter is very fortunate to have you and her family supporting her. My heart aches for you all, and I hope you can work through the process together for a timely and positive outcome.

I agree with you so much on this. She is convinced she needs an attorney because "her brain isn't working right," and she tries to limit what I feel I could do for her. Actually she does understand more about her condition than I do. There are so many aspects to Lyme and the other autoimmune issues associated with it, like processes in the body that need to work but are blocked by affected substances in the body that I can't even pronounce, let alone understand. However, as you stated, I don't believe this attorney understands any of it either, and she needs an informed advocate.

I am hoping the Lyme doctor she is scheduled to see in January will be able to formulate a diagnosis for her that will explain what is wrong . . . the problem is he cannot divulge who he is or he could lose his license to practice as an MD. I can't believe that! It boggles my mind! Not allowed to practice something one is expert at that others deny exists because they don't know how to treat it? . . . just does not compute with me!

It is horrifically frustrating.