SSI Disability

[Jay]

Hello all,

I hope that you're doing well. This post is made with some hesitation, as I do not want to discourage anyone through my honesty, but I did promise Webslave that I'd do it. The information may prove beneficial to other sufferers.

As many of you know, I've had chronic prostatitis / chronic pelvic pain syndrome to one degree or another since I was a teenager. It went chronic and became serious nearly three years ago. Following my tour through the gauntlet of GPs and urologists, I wound up here, and the rest is history. What I was never so open about was just how serious and unresponsive my condition has been.

CPPS eventually took my ability to work, due in part to an inability to sit for sufficient periods of time. Physical therapy was proving beneficial, but I suffered a setback from which I never recovered. Of course, because the family took a financial dive, it was no longer possible to continue pursuing PT as a fix. My treatment path has since consisted solely of pain management. I've found a kind of equilibrium, a mental state where my pain is accepted and lived with, but it was apparent early on that I was going to need help.

I began the process of pursuing disability in late 2008. It has been a very difficult challenge, more than deserving of being called a battle. The initial application was denied, as was the appeal. That took a while. After that came a year's wait for them to set an appointment to go before an Administrative Law Judge. This individual sees you in person, unlike the Social Security desk folks, and has the ability to make a personal ruling on your case. The odds were very much against me in the sense that 1) I am young, and 2) our condition is not well understood by conventional medicine.

To my great surprise, I recently learned that the judge had granted me a fully favorable decision. Victory, in other words. This was owed in equal parts to consistent documentation and treatment by my PM doctor, and diagnosis/documentation/treatment by a highly qualified PT. There was also an element of simply being honest with the judge, who believed me in turn. It was not easy to stand up in that court room and graphically describe the various trials of pelvic pain, but my problem was no less deserving of full consideration than any other.

SSI will provide me with a small amount of monthly cash, not nearly enough to live on, but something to help out. More importantly, I will be enrolled into Medicaid and receive the medical assistance I have desperately needed. I'll be able to afford to continue visiting the University of Miami, my meds will be covered, and I can resume treatments like PT and hydrotherapy.

I post this to offer some hope to those of you who may be feeling short of options. I come from a household with very little resources, and there was a long time where I simply had to suffer for lack of any alternative. The emphasis here is that there is the possibility of getting some help. Often, it'll take a lot of fighting and stress to get any of said help, but it exists to benefit people like you and I.

My post should not be taken as a denouncement or indication of ineffectiveness regarding any of the treatments promoted on the site. I have not, for example, undergone the Wise-Anderson Protocol style of treatment. It's also important to me that people know chronic prostatitis / chronic pelvic pain syndrome is rarely as serious as I have it.

I intend to continue participating here, and to be a force for encouragement, rather than discouragement. I have certainly not given up.

[webslave]

Thanks for posting this, Jay.

[Burner2k]

Jay,
I kind of get an idea about your condition from your post and hats off to you sir. I would have given up a long time ago if I was in your shoes (Nope, I am not that strong). Great to know that you have help financially that will enable you to seek medical help. Thanks for sharing this with us. Good luck.
Regards,
-B

[Sherradin]

Jay you are so brave. And also so young which is all to your advantage. I am sure you can get even better. I was pretty bad at one stage and was suicidal it nearly killed me the pain every day...nerves do settle and forget the pain. I know you will get to smell the roses..I am so happy for the success you have had with disability.

With your money could you give Lyrica a try. It is very expensive here in Australia. I am not sure if it would be covered there or not...but it helped me get to a point the PT would work. My very best wishes to you

[Jay]

Hi Sherradin,

I am on Lyrica through my pain management physician, at 300mg/day. It's very expensive here in the US, too, but I have been getting it free from the company due to my financial state (this may change with Medicaid).

Although there has been some debate as to the drug's effectiveness for CPPS, I tend to think that it helped me achieve some stability. Not improvement, but stability, which I'll not complain about!

It's possible that the drugs could help more, if I ever get the state of my pelvic floor under control. For now, I breathe a sigh of relief at having finally won the SSI battle. ;)

[superuse]

Out of curiosity, a neighbor here in Ohio gets about $780/mo from SSI. Is that about what it is for you in Florida? Does anyone know if it even varies by state?

My company deals with medcaid accounts. I know that a prescription drug benefit passed for medicare. I don't know if one exists (or has always existed) for medcaid. If anything just keep your current relationship with the drug manufacturer as long a possible. Your income shouldn't change the picture.

For drugs such a neurontin, and son of neurontin (Lyrica) , getting enough in you may be an issue. *Slowly* increasing the dosage (using pill cutters etc) over a period of months may reduce side effects till you approach the max dose recommended by Doc. Increasing the dose past that by conferring with doc may also be benefical. Some people dump all the drugs due to side effects the first week and forgo a slow buildup.

Get well
-jim

[Jay]

Hi Superuse,

I do not yet know what I'll be receiving for my monthly payments. They tell you that in an award letter, and mine should get here in about two weeks.

SSI payments have a cap set by the Fed. Right now, it's $674/mo for an individual and $1,011/mo for a couple. It only changes if there is a Cost Of Living Increase (COLA), which has not happened in two years. Your personal payments can be lower than this, depending upon factors such as income and living arrangements. It could be that your neighbor receives a state supplemental in addition to his normal pay.

Of course, SSDI (what we tend to think of as "regular" disability) is more generous because you've paid into the system. SSI is just a supplemental. Unfortunately, I did not have enough work credits for SSDI.

I've been on Lyrica for years now, as well as my other medications. On the bright side, I've never felt the need to nudge any of my dosages upwards. Hopefully, I can use these new resources to resume pursuing non-pharma options for treatment.

[superuse]

Yes, I forgot he may be ssdi. He is also married which also affects things as you said. Its good if you are getting desired effects from current med levels. Just remember if side effects are a limiting factor they may be overcome slowly.

-jjf

[ramana]

Well after many many months, I visited this forum again to post about disability insurance and to my surprise found this post.

I have been denied SSI and am waiting my turn to appear before the administrative law judge. Meanwhile, I had been receiving disability through my employer sponsored disability plan for some time. In a bid to deny the claim, the company attempted to conduct surveillance on me. The first time they were unsuccessful as I did not come out of the house for multiple days. Then they asked me about my schedule to go to the doctor. Unaware of their intentions, I told them the appointment date. They then videotaped me driving to the doctor and walking from the parking lot to the doctor's office. Based on this they denied the claim saying that I was able to walk and drive and therefore able to work for 40 hours. I am now fighting a lawsuit but it is an uphill battle. The reason is that the disability insurance is governed by ERISA law which is completely lopsided in favor of insurers. Google for more information on ERISA. Good morning America / some newspapers have published stories on ERISA and at least one congressperson is attempting to draft a legislation to modify the law. However, the insurance lobby is strong and resists any changes that will adversely affect their business model

The reason I wanted to post here was

1. I was wondering if anyone has press / media contacts. There are some of us (with various illness) trying to make the public aware. We are now stuck in the system. However, those people who are still healthy should be able to make an informed choice about their policies.
2. If anyone has any disability insurance related issue, let's talk.

Of course, I should add that my case has been very different and difficult from the start. Looking through the posts, I see that most people who had reported symptoms along with me seem to have cured. I don't know even know if I have chronic prostatitis / chronic pelvic pain syndrome though with the benefit of this board, I have tried various solutions that at least made my life liveable.


Good luck everyone. Thank you webslave for such a useful forum

[gmccormack]

This is a discouraging topic to read about, I had debated going on disability through my employer but decided against it, I think it would be too mentally difficult to handle.

In terms of press contact, I have one at the NYT, he suggested I write an op ed. I explained the chronic prostatitis / chronic pelvic pain syndrome world and mentioned a few leading researchers. He kicked it back saying I should talk more about myself, the average reader does not want to know about the scientific industry side. So I wrote a compelling story about my own struggle with CPPS, and had it edited by a journalist I went to school with. Then I resubmitted and my contact came back and said "my editor says no one wants to read this sh*t, it's too depressing and because of the location (genitals) makes its taboo, sorry we can't do anything with it"

It was my intention to really put chronic prostatitis / chronic pelvic pain syndrome on the map and get the condition well known to the general public, it's frustrating it's not when half of men suffer from it at some point in their lives. What maybe 1 in 10 really have it...? even if 10% have it, it should be a household disease.

That was back when I had big dreams and fantasies about millions in funding if I could get it printed in a major media outlet. Generally speaking, I find that no urologist wants to talk about it or deal with it, men who have it don't want to admit it publicly, and the public doesn't want to hear it. Not a good combo.

The thing that really does surprise me is that why haven't the insurance companies gone crazy, personally my insurance company has covered well over $500,000 in drs visits, meds, scans, non invasive procedures, PT. I assume many others are also doing the same. Why aren't they leveraging their power with the NIH and others to do more research? In the long run it will save them millions if not billions.

[Jay]

My advice, Ramana, is to be well prepared. Have thorough medical records, and be certain that all of your testing documentation is in order. If possible, have your doctor's on the record opinion that you are disabled by your condition. A long, consistent record of treatment is helpful. I also suggest getting a lawyer who specializes in disability cases. Mine was very helpful to me, and they can only take a percentage out of your back pay if you win.

I do not find disability to be depressing, but then, it has already been a blessing to me in many ways. I'm no longer burdened with the thought of being a hardship to my parents, as I am able to get my medications and treatments without putting the bill on them. More options are open to me, and I have some security for my future.

[gmccormack]

You are a stronger man than most Jay.