Disbelieving Doctors

[nyeema]

I have had IC over 30 years. Jan. 2010 my symptoms became MUCH worse. My Uro at the time recommended i stop working ....long story short i have not been able to return to work due to my symptoms. had to change uros due to insurance issues. current uro does not want to sign the SSI paperwork.

What are they scared of? Do they think i prefer to live on the SSI pittance rather than have my life back?

What more can i tell my uro to convince her that i am disabled by this disease?

she has all my symptoms and hx. my urine journal recorded an average of 4 trips per hour. the pain and loss of sleep are the worst...what more can i tell her?

Ideas?

thanks
nyeema

[ICNDonna]

Is it possible to see your old uro for help with the disability issue. I know it could be expensive, but could be well worth it. If that's not a choice, maybe you could see yet another uro --- you might ask your former uro for some advice in selecting someone.

Warm hugs,
Donna

[Mothergoose]

I actually agree with Donna's suggestion, but what also comes to mind is ask her if she would hire you to work for her, would she be able to look past you going to the bathroom every 15 mins, and calling in sick every other day due to no sleep or having to take a fews days off a week due to a flare from sitting or standing too long at work.

If she would be willing to keep you on staff like this and still pay you. I think she would not so why should she expect anyone else to hire you under these conditions.

A little caddie I know but what do they expect you to do. I am thinking it is time for a new Dr. if after more than a year the Dr. has not been able to help you enough to get back some quaility of life, you need another dr. to help.

Good luck MG

[earthlady]

If you would ever go the route of hiring an attorney they could most probably give you a referral to a medical doctor who deals with this type of disability request. They are very familiar with all the doctors who treat disability patients and also who request disability for their patients.

[Linda May]

I to use to be extremely active before my IC, my family and friends all no this to be true.

Well, as you know my fellow icers your life doe's change dramatically and no one understands except other icers.

I hate not being able to do the things I use to do.

I hate it when family or friends say you look fine to me, they do not understand I may be in a temporary remmission.

I hate it when people tell me its all in your head.

I am extremely angry at some doctors who do not understand, when we are flaring so bad that we can't hardly move; and these doctors refuse to give pain meds.

The general public doe's not understand this dipilatating desease at all, but if they were to walk one single day in our shoes they would know it then.

There have been so many new case's being diagnosed daily I pray for a cure daily, no one should have to go through this.

I have tried to no avail to get Oprah Whinfrey to do a segment on her show about IC awareness.

Maybe one day a talk show host will do a segment, so the general public can be more comppasionate and understanding.

[Maribibi]

In my experience obtaining SSI, I had to go through my primary care doctor. In California, at least, no specialist will fill out SSI paperwork (I go to USCD). Your primary care provider can be your best friend. He or she should have access to all of your records, and then can fill out the paperwork with the info from the specialists, i.e., Uro, Rhematologist, Allergist, etc. I was approved after 2 years and a denial. I had to get a SSI attorney and before we even went to court, the SSI judge changed the denial to an approval! I had to pay the attorney anyway!

[nyeema]

re: disbelieving docs

thanks for your post. my first primary was so clueless about my ic. she felt uncomfortable dealing with it. i finally got kaiser and have a better primary. i don't really know who ultimately got the ssi paperwork. my kaiser uro said she hadn't seen any, haven't asked my new kaiser primary.

my uro said she's never had an ic patient on disability. i thought this was shocking and led me to believe that she is not going to sign any paperwork. it also made me feel as tho she must not have had many ic patients. i can't be the only one who is in constant pain and has to pee all the time. where am i supposed to work??

i'm glad you finally won your case. is it permanent disability or do you have to renew it ever so often?
thanks
nyeema

[nyeema]

Some replies

i just wanted to thank all the replies i've received on this thread. everyone is so helpful.

thanks for the advice mothergoose. the next time i have to talk with these docs about my ic i'm going to ask them if they would allow me to stay on their staff given my current symptoms!

And linda may when i read your response i saw myself in everything you said. a year and a half ago i was 30 pounds lighter and full of energy. i road my bike everyday and kayaked and hiked on my days off. i traveled throughout central america and the caribbean. i was a completely different person...

i worked at the same job for sometime...and it was a very active and enjoyable position. i have not worked for a year and a half and each step i tqke is painful...

my only solice is in the thought that at least if i can get ssi i will have enough money to just get by...i have spent all of my savings and my 401k.

to have to battle with medical caregivers is the last thing i feel like i should have to do.

let's envision that cure and hope it happens soon. if i can't get the cure in my lifetime i would at least like compassion. i too asked oprah to do a show on ic. maybe we should try oz???
nyeema

[Maribibi]

I received it with a renewal in 3 years. Probably this is because I am educated. The SSI (or SSDI, actually we apply for SSDI because we worked) has a chart that determines the approval or renewal. If you are over 50, there is a different standard. That is probably one of the reasons that SSI finally approved me. I was 48 when I was disabled, but 50 when they approved me. They took into account my education, even though I never was able to work in my field (I was diagnosed with IC, etc, right after graduating from University). I ALWAYS was overqualified because I had to take positions that allowed for frequent bathroom breaks (and believe me, I was reprimanded for that and almost lost every job I had because I had horrific flare-ups that lasted 2-3 months at a time, and I ended up on short-term disability at least 4 times before I finally had to file for SSDI). But what will definitely help in getting disability is providing PHYSICAL proof of your illness. I had to undergo a cystoscopy (had it done when I was diagnosed, never wanted to undergo that again!), which showed PHYSICAL evidence of the disease. I had the bladder capacity of 30 cc. You can't argue the facts. I had this done after the initial denial and I think that is what won my case. That, and the fact I had turned 50. It is so sad that such a disabling disease is treated so lightly.

What I would suggest is going to an IC specialist at a major research facility and spend the money to do it. Get physical evidence, backed up by more than one doctor, and have your Primary Care doctor review them. Make sure that your PCD is on your side and believes you. Also, go to pain management clinics, physical therapy; anything to show that you are doing everything you can to manage your disease. Kaiser Uros did not do me any good, but their pain managment team helped a lot. I had a great PCD there too. Just keep looking until you find a sympathetic doctor. You should NEVER go to a urologist who doesn't know the latest developments. There will always be discrepencies with specialists, but there is more than enough information at this website to present to any urologist. If they dismiss you; dismiss them.

Hope this helps. I don't know what will happen at my review, which will be in a couple of years, but for me, this disease is getting worse, no matter what I do. As try as I might, I cannot imagine life without pain. I sure wish there would be a cure!

[momw/ic]

I agree with what the others have said on here. I think what ended up helping me get approved it that by chance we moved from state to state after my diagnosis for my husband's job so I had consistent documentation from several different docs. They all said theme and variations of the same thing about my IC. It shows consitency and gives the patient credibility. Also seeing your doc regularly - every month or 2 also gives credibility and shows ongoing symptoms. It will all be documented by your doc in the file they send to SS dept.