How to go about getting disability??

[jen74 ICN Member Find all posts View Profile Close jen74]

Hi Ladies.
I have been thinking about applying for disability, but have no clue where to start. I have alot of debilitating health issues that have prevented me from returning to work for the last 5 years.
The thing is, the problems I have I dont think are considered a disability. I have a nueropathic dysmotility of the small bowel which causes severe bloating, pain, nausea,etc.... I also have IC ( but was diagnosed by a regular cystoscopy). Do you have to have the hydro first before they will accept a diagnosis, because I am not willing to make myself worse by going through this test. I was advised against it by a couple of my other doctors.
Also, I have a possible autoimmune disorder, but no accurate diagnosis. I have ALOT of muscle pain, Plus posisitve ANA blood work, but just they cannot pin point what I have. They just say it is autoimmune.
I want to apply for disabiltiy because my hubby said he just read about this law they have that says that after not working for 10 years, your points no longer count, they are taken away. He said I should try and apply now before this happens to me, otherwise I worked all of the years I did for nothing. I am just afraid I will get denied. I mean I have a friend who has severe gastroparesis and is on a feeding tube, and she vomits like 15 times a day or more and they denied her.
Do you have to go through additional testing, and do your doctors have to fill out a ton of forms? I am not sure how happy my doctors would be to fill out a ton of forms when they are so busy. Just want to know how to go about doing this, and should I just work with my lawyer from the start since I know usually peple have to have a lawyer in order to even have a chance at getting accepted.Any advice is appreciated.
Jen

[tigger_gal ICN Member Find all posts View Profile Close tigger_gal]

Jen, I am one of the few that got my ssd the first try. Your doctors, all of them will have to fill out ssd papers. I was sent for a physic evaluation, as many of us have, some even had to go to there doctors. A basic cysto for a dx might not be accurate test for them. Many many ICer's have excellent results after a hydro and actually use it for a form of treatment. go to www.ssa.gov and see what you can find in there.. good luck.

[jen74 ICN Member Find all posts View Profile Close jen74]

Thanks Tigger-gal
I will look into it. I am not willing to do the hydrodistention though. I have ALOT of nerve issues and my gastro said that this test would likely put me through the roof as far as pain goes, and I believe him. I had a regular cystoscopy and had pictures taken of my bladder and on the report under diagnosis is says painful bladder syndrome, which is the same as IC. Would this be sufficient?
Jen

[Elle ICN Member Find all posts View Profile Close Elle]

Just wondering outloud...if your ANA is positive, is your Dr. considering Lupus? Is that the autoimune disorder you're talking about, or is he referring to IC (some docs believe IC is an autoimmune issue). Just wondering b/c Lupus is an Adult Listing for SSA, meaning it be a bit easier to get approved as long as you meet the requirements.

As for disability...you don't have to have a cysto to be approved, but it certainly does help. The way the IC Ruling is written states that you have to have the "appropriate diagnostic procedures". A cysto seems to be the general concensus as for appropriate dx. But, it doesn't say who exactily determines what "appropoiate" is, so if your Dr feels a regular cysto is enough for a dx, then I don't see where SSA could fault him. But, you still have to proove that your case is severe enough to prevent you from working.
I also have lots of nerve issues and, to be honest, the cysto didn't really affect them. The only thing it did for me was to make my bladder worse for about a month and then things were as bad as they ever were. I do know now that I've stopped all of the instills, cystos, hydros, etc, that things are somewhat better than they were. Don't get me wrong...they still truly suck and I'm on daily meds to keep things in check, but not "bothering" things has certainly helped.
I was approved for disability based off of IC, but was initially denied and went through a 4 year battle. You're right about no longer being eligible if you wait too long. The general rule of thumb is that you must have worked 5 of the last 10 years. I would strongly encourge you to apply as soon as possible. You can do everything over the phone, if you feel more comfortable doing it that way. I never actually met my caseworker face to face. We handled everything over the phone, through mail and online. The first time I met face to face with someone was at my hearing. I was just really ashamed about applying. Even though I knew I had no other alternative, it was still an incredibly humbling time in my life. I even opened a bank account in another state for my monthly benefits to be deposited. I tend to keep my illness as private as I possibly can, and don't feel it's anyone's business what I'm going through. Anyway...please apply soon if you feel this is what you need to do. I wish you lots of luck!

[jen74 ICN Member Find all posts View Profile Close jen74]

Hi Elle.
They did not think I had lupus, as some of the other blood work for lupus came back ok. They were at first thinking scleroderma, but then I got a second opinion from another specialist and he said he did not think I has sclero. He did say I likely had something autoimmune going on, but not sure what. Sometimes they can never pin point it. I also had one rheumy say I had a possible undifferenciated connective tissue disease. So no clear cut answer or dx.
I was diagnosed by a regular cystoscopy, though I was asleep for it, I insisted on being sedated since the last in office cysto was unbelievably painful. I vowed to NEVER do it awake again. I refused to do the hydrodistention though because I cannot take pain meds what so ever due to my stomach illness and I was not about to be in severe pain with no help afterwards. Plus like I said, my GI doc said because of my nerve issues, he would not advise it. See, the uro's whole point of the hydro is to hopefully desensitize the nerves by stretching the bladder beyond it's ability really, and hopefully your pain will lessen. But what they dont tell you is that when your nerves regeneratem, and they will, the nerves can double and when your pain returns it can be double that of what you had previously.
I was not taking that chance. It is not normal to stretch the bladder like that in anyone. My gyne said they had studies where they did the hydro on people who dod not have IC and they had positive hydros. All that stretching of the bladder caused damage to their bladders. There are also false negatives at times as well. Not accurate enough in my opinion.
Anyhow, the urogyne that did my regular cysto said that on the report I have that my bladder appeared Very vascular and inflammed. He said it was typical of IC. The diagnosis was painful bladder syndrome which is IC.
I think it all depends on who you are working with or who your case worker is too. I am going to try and get things started and apply. I have to speak to my doctors first and let them know. The only bad thing is that I have two disease that are not really listed as a disabiltiy. I mean I know IC is listed, but they deny most people with it. ALso my dysmotility of the small intestine /stomach is also not really listed, though it should be, as it is not a easy thing to live with feeling pain, severe bloat and nausea all the time, or at least most of the time.
Thanks for all the info. I have not worked since 2002. I hope I will still be eligable.
Jen

[Elle ICN Member Find all posts View Profile Close Elle]

Just so you know...IC is not a SSA Listing, it's a Ruling. That's why so many are denied. The Ruling is incredibly subjective and seems to be interruperted differently by the Medical Examiners from state to state. Just wanted to let you know.

[DebbieD ICN Member Find all posts View Profile Close DebbieD]

Jen! I got my Disability on the first try. Just make sure you get all Drs. to fill out forms ans keep a Diary of when you see a Dr. or go in the Hospital. Keep all Dates. Also For the First 8 years I got reviewd to see if I was able return to work. Which I was not.

Good Luck.
DebbieD

[jen74 ICN Member Find all posts View Profile Close jen74]

Thanks Elle for that info. Do you by chance live in Illinois? I know it is very hard to get disabiltiy, well for some that is. I actually have a neighbor who has been on disabiltiy for over three years now for a back injury, but he is able to work on his car, lift heavy things all the time, and he was accepted, yet I have a friend who has gastroperesis and she vomits 15 or more times a day and can hardly eat and has lost 50 lbs within just seven months, yet they denied her. I just dont get the system.
I want to go back to work soooo bad, but I just cant with all the health issues I am dealing with. I mean how do you hold down a job when you have to call in 4 days out of the week because you are to sick? I am going to apply now because my hubby said that if I wait to much longer, I wont be able to qualify anymore, which again I think is a bunch a bull****. I mean I worked alot of years and paid into SS and I think anyone who worked should be entitiled no matter how long of time has went by, it should not be taken away.

I have a ton and I mean a stack of medical papers and records, but they are useless if the state does not recognize your illness as a disability. It is sad. I have been dx with two diseases that are disabling to me, one being a stomch illness and the other being IC. Both are very painful and dabilitating, but SS may not see it that way. I am likely going to use my lawyer right off the bat so I dont waste my time.
Thanks again ladies, I appreciate all the help.
Jen