Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 walt -- if you have an in person interview with social security -- use your oxygen some people get approved with telephone interviews Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re:tired (thank you)To: Breathe-Support Date: Wednesday, September 16, 2009, 2:19 PM Thanks everyone. I hate that you when you know what is "right" and you go to the doc and leave second guessing yourself. That is just one of the many reasons this board is so important. Walt on Whidbey IPF,Nsip.Uip. 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†From: Paradis3 (AT) aol (DOT) com <Paradis3 (AT) aol (DOT) com>Subject: Re:tiredTo: Breathe-Support@ yahoogroups. comDate: Wednesday, September 16, 2009, 5:12 AM You have to be aggressive. I can't believe some of these doctors. My first pulmonologist got the diagnosis of IPF, gave it to me, said it was "very advanced" and sat back in his chair and said basically nothing could be done. I would not qualify for a lung transplant, there was no pulmonary rehab available, nothing could be done. So I went home, read up on it, found out about pulmonary rehab, found out about drug trials to ask him about, found out more about transplants, went back and asked him about these things and he just wasn't interested in helping. And he's a senior doc, has fellowships, great credentials, the whole deal. So I changed pulmo dudes. Now I'm approved for a transplant, I've had pulmonary therapy and go to the gym 4 times a week, I'm taking NAC and some other things that might help, and I've lived a year longer already than the first guy thought I would! DO NOT HESITATE TO CHANGE DOCTORS!! Bill C. IPF 10/08 N.E. PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 I got approved over the phone quickly with the Drs. documentation. Miranda LA / 28yrs old IPF 05 > > > From: Paradis3 (AT) aol (DOT) com <Paradis3 (AT) aol (DOT) com> > Subject: Re:tired > To: Breathe-Support@ yahoogroups. com > Date: Wednesday, September 16, 2009, 5:12 AM > > >  > > >   You have to be aggressive. I can't believe some of these doctors. My first pulmonologist got the diagnosis of IPF, gave it to me, said it was " very advanced " and sat back in his chair and said basically nothing could be done. I would not qualify for a lung transplant, there was no pulmonary rehab available, nothing could be done. So I went home, read up on it, found out about pulmonary rehab, found out about drug trials to ask him about, found out more about transplants, went back and asked him about these things and he just wasn't interested in helping. And he's a senior doc, has fellowships, great credentials, the whole deal. >  So I changed pulmo dudes. Now I'm approved for a transplant, I've had pulmonary therapy and go to the gym 4 times a week, I'm taking NAC and some other things that might help, and I've lived a year longer already than the first guy thought I would! >   DO NOT HESITATE TO CHANGE DOCTORS!! >  > Bill C. IPF 10/08 > N.E. PA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 Walt Doubling what Pink said. We're use to presenting ourselves at our best. That would be disaster in a social security interview, to give that pretense. The interviewer will be forming an opinion on what they see, not just what you say or the records. We often talk about not looking sick to our friends. The interviewer needs to witness your limitations. Oxygen automatically sends a message, coughing and shortness of breath do. I know I can appear like a normal healthy person. In most cases, I attempt to and give that upbeat positive appearance. We act healthy and " act " is sometimes what we are doing. A Social Security interview or one with a doctor they select is not the time to do that. > > > From: Paradis3 (AT) aol (DOT) com Paradis3 (AT) aol (DOT) com> > Subject: Re:tired > To: Breathe-Support@ yahoogroups. com > Date: Wednesday, September 16, 2009, 5:12 AM > > >  > > >   You have to be aggressive. I can't believe some of these doctors. My first pulmonologist got the diagnosis of IPF, gave it to me, said it was " very advanced " and sat back in his chair and said basically nothing could be done. I would not qualify for a lung transplant, there was no pulmonary rehab available, nothing could be done. So I went home, read up on it, found out about pulmonary rehab, found out about drug trials to ask him about, found out more about transplants, went back and asked him about these things and he just wasn't interested in helping. And he's a senior doc, has fellowships, great credentials, the whole deal. >  So I changed pulmo dudes. Now I'm approved for a transplant, I've had pulmonary therapy and go to the gym 4 times a week, I'm taking NAC and some other things that might help, and I've lived a year longer already than the first guy thought I would! >   DO NOT HESITATE TO CHANGE DOCTORS!! >  > Bill C. IPF 10/08 > N.E. PA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 Miranda I did not ever meet with them either. > > > > > > From: Paradis3 (AT) aol (DOT) com Paradis3 (AT) aol (DOT) com> > > Subject: Re:tired > > To: Breathe-Support@ yahoogroups. com > > Date: Wednesday, September 16, 2009, 5:12 AM > > > > > >  > > > > > >   You have to be aggressive. I can't believe some of these doctors. My first pulmonologist got the diagnosis of IPF, gave it to me, said it was " very advanced " and sat back in his chair and said basically nothing could be done. I would not qualify for a lung transplant, there was no pulmonary rehab available, nothing could be done. So I went home, read up on it, found out about pulmonary rehab, found out about drug trials to ask him about, found out more about transplants, went back and asked him about these things and he just wasn't interested in helping. And he's a senior doc, has fellowships, great credentials, the whole deal. > >  So I changed pulmo dudes. Now I'm approved for a transplant, I've had pulmonary therapy and go to the gym 4 times a week, I'm taking NAC and some other things that might help, and I've lived a year longer already than the first guy thought I would! > >   DO NOT HESITATE TO CHANGE DOCTORS!! > >  > > Bill C. IPF 10/08 > > N.E. PA > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 I never met with anyone in person either. I submitted my application online, had a couple of phone interviews, dropped off all my medical records at the office etc. I applied in September of 06 and was approved in February 07 retroactive to November 06. They dated my disability beginning from May of 06 when I stopped working. The only other thing I did...in late December of 06 Social Security requested that I see one of their doctors. That was a joke. He had never even heard of this lung disease. But it was about 6 weeks after that appointment that my first payment was made to my bank account via direct deposit. I got the money before I got the approval letter. Two things I would suggest: 1) Bury them with your medical records. Document everything. The more we supply to them the less they will have to ask for. Once they have to ask for something that adds to the time it will take to process your claim. 2) Make sure your doctor is supportive of your claim. Your doctors opinion is extremely important in SS eyes. They assume he/she knows your situation better than anyone. If your doctor does not support you your chances of being approved are less. Back when I was making my application to SS I found this information on the Survivorship A to Z website and thought it was helpful. When you talk with your doctor: It is preferable not to use the word "disabled" about yourself. She or he is likely to have a very different idea of what "disabled" means. You want to keep the focus on the Social Security criteria. Likewise, avoid the word "permanent." Social Security doesn't require it. It's better to just talk about the problems you've been having at work and your need to stop work for the time being. Explain to the doctor (and keep in mind when you speak with him/her) that the definition of "disability" for SSDI purposes for adults who aren't blind is: You must not be working and earning over $940 a month in 2008 ($1570 if you are blind). Due to one or more physical or mental health impairments. Which already has lasted, or can be expected to last, for a continuous period of not less than 12 months or to result in death. Hope some of that helps someone! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, September 16, 2009 7:40:24 PMSubject: Re:tired (thank you) MirandaI did not ever meet with them either.> >> >> > From: Paradis3 (AT) aol (DOT) com Paradis3 (AT) aol (DOT) com>> > Subject: Re:tired> > To: Breathe-Support@ yahoogroups. com> > Date: Wednesday, September 16, 2009, 5:12 AM> >> >> > Â> >> >> >   You have to be aggressive. I can't believe some ofthese doctors. My first pulmonologist got the diagnosis of IPF,gave it to me, said it was "very advanced" and sat back in his chair andsaid basically nothing could be done. I would not qualify for alung transplant, there was no pulmonary rehab available, nothing couldbe done. So I went home, read up on it, found out about pulmonaryrehab, found out about drug trials to ask him about, found out moreabout transplants, went back and asked him about these things and hejust wasn't interested in helping. And he's a senior doc, hasfellowships, great credentials, the whole deal.Â> >  So I changed pulmo dudes. Now I'm approved for atransplant, I've had pulmonary therapy and go to the gym 4 times a week,I'm taking NAC and some other things that might help, and I've lived ayear longer already than the first guy thought I would!> >   DO NOT HESITATE TO CHANGE DOCTORS!!> > Â> > Bill C. IPF 10/08> > N.E. PA> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 Beth In addition to gathering your records a brief letter from the key doctors summarizing your condition and stating firmly their opinion accompanying the records can be helpful so they see before they wade through. Biggest problem social security has is getting records from doctors. As to social security doctors, they actually seemed to think i was worse than my doctors did in some aspects, so were a great help I believe. > > > > > > > > > From: Paradis3 (AT) aol (DOT) com Paradis3 (AT) aol (DOT) com> > > > Subject: Re:tired > > > To: Breathe-Support@ yahoogroups. com > > > Date: Wednesday, September 16, 2009, 5:12 AM > > > > > > > > >  > > > > > > > > >   You have to be aggressive. I can't believe some of > these doctors. My first pulmonologist got the diagnosis of IPF, > gave it to me, said it was " very advanced " and sat back in his chair and > said basically nothing could be done. I would not qualify for a > lung transplant, there was no pulmonary rehab available, nothing could > be done. So I went home, read up on it, found out about pulmonary > rehab, found out about drug trials to ask him about, found out more > about transplants, went back and asked him about these things and he > just wasn't interested in helping. And he's a senior doc, has > fellowships, great credentials, the whole deal. > > >  So I changed pulmo dudes. Now I'm approved for a > transplant, I've had pulmonary therapy and go to the gym 4 times a week, > I'm taking NAC and some other things that might help, and I've lived a > year longer already than the first guy thought I would! > > >   DO NOT HESITATE TO CHANGE DOCTORS!! > > >  > > > Bill C. IPF 10/08 > > > N.E. PA > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 I know that when my husband (who had lung cancer) applied, I did all the work on the online application. And we never had one phone call, 6 weeks later..boom money and acceptance letter. But I also know that his doctor's put the important "result in dealth" on the paperwork. Lets face it, most people with LC don't go the extra 4 years he had. One of the reasons I'm going to NJH and will get all the copies they will give me. Because they go to your doctors, it can be really important like Beth says to have that kind of a relationship with your doctor. Dyane Phoenix ipf 02> > >> > >> > > From: Paradis3 (AT) aol (DOT) com Paradis3 (AT) aol (DOT) com>> > > Subject: Re:tired> > > To: Breathe-Support@ yahoogroups. com> > > Date: Wednesday, September 16, 2009, 5:12 AM> > >> > >> > > Â> > >> > >> > >   You have to be aggressive. I can't believe some of> these doctors. My first pulmonologist got the diagnosis of IPF,> gave it to me, said it was "very advanced" and sat back in his chair and> said basically nothing could be done. I would not qualify for a> lung transplant, there was no pulmonary rehab available, nothing could> be done. So I went home, read up on it, found out about pulmonary> rehab, found out about drug trials to ask him about, found out more> about transplants, went back and asked him about these things and he> just wasn't interested in helping. And he's a senior doc, has> fellowships, great credentials, the whole deal.Â> > >  So I changed pulmo dudes. Now I'm approved for a> transplant, I've had pulmonary therapy and go to the gym 4 times a week,> I'm taking NAC and some other things that might help, and I've lived a> year longer already than the first guy thought I would!> > >   DO NOT HESITATE TO CHANGE DOCTORS!!> > > Â> > > Bill C. IPF 10/08> > > N.E. PA> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 Dyane Lung Cancer would be pretty much a certainty. Lung disease is more a matter of the current level of the disease as opposed to the disease itself. > > > > > > > > > > > > From: Paradis3 (AT) aol (DOT) com Paradis3 (AT) aol (DOT) com> > > > > Subject: Re:tired > > > > To: Breathe-Support@ yahoogroups. com > > > > Date: Wednesday, September 16, 2009, 5:12 AM > > > > > > > > > > > >  > > > > > > > > > > > >   You have to be aggressive. I can't believe > some of > > these doctors. My first pulmonologist got the diagnosis of IPF, > > gave it to me, said it was " very advanced " and sat back in his chair > and > > said basically nothing could be done. I would not qualify for a > > lung transplant, there was no pulmonary rehab available, nothing could > > be done. So I went home, read up on it, found out about > pulmonary > > rehab, found out about drug trials to ask him about, found out more > > about transplants, went back and asked him about these things and he > > just wasn't interested in helping. And he's a senior doc, has > > fellowships, great credentials, the whole deal. > > > >  So I changed pulmo dudes. Now I'm approved for a > > transplant, I've had pulmonary therapy and go to the gym 4 times a > week, > > I'm taking NAC and some other things that might help, and I've lived a > > year longer already than the first guy thought I would! > > > >   DO NOT HESITATE TO CHANGE DOCTORS!! > > > >  > > > > Bill C. IPF 10/08 > > > > N.E. PA > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 Bruce, Thats very true, but how many of the new people to this board come to us scared to death because they have gone t0 the internet and the VERY FIRST THING THEY READ says Death in 3 to 5 years! For once we should be able to use that to our advantage! I know we are all different but I know my body and the odds of me getting a lung transplant are between slim to none. I'm already on 8lpm. This damn disease is gonna kill me long before I see my youngest granddaughter grow up and at the very least I shouldn't have to jump through hoops to prove it to some ass at the local SS office! I don't mean to be rude but I'm tired of being tired, tired of being tied to a frigging 40 foot cord, tired of having to explain and explain and explain... Dyane > > > > > > > > > > > > > > > From: Paradis3 (AT) aol (DOT) com Paradis3 (AT) aol (DOT) com> > > > > > Subject: Re:tired > > > > > To: Breathe-Support@ yahoogroups. com > > > > > Date: Wednesday, September 16, 2009, 5:12 AM > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > >   You have to be aggressive. I can't believe > > some of > > > these doctors. My first pulmonologist got the diagnosis of > IPF, > > > gave it to me, said it was " very advanced " and sat back in his chair > > and > > > said basically nothing could be done. I would not qualify for > a > > > lung transplant, there was no pulmonary rehab available, nothing > could > > > be done. So I went home, read up on it, found out about > > pulmonary > > > rehab, found out about drug trials to ask him about, found out more > > > about transplants, went back and asked him about these things and he > > > just wasn't interested in helping. And he's a senior doc, has > > > fellowships, great credentials, the whole deal. > > > > >  So I changed pulmo dudes. Now I'm approved for a > > > transplant, I've had pulmonary therapy and go to the gym 4 times a > > week, > > > I'm taking NAC and some other things that might help, and I've lived > a > > > year longer already than the first guy thought I would! > > > > >   DO NOT HESITATE TO CHANGE DOCTORS!! > > > > >  > > > > > Bill C. IPF 10/08 > > > > > N.E. PA > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Dyane I'm just talking about how social security sees it. And in their case ILD's and COPD are based on level of impairment. At least we have some hard numbers to use like PFT's. Think of those who have back injuries and severe pain or some neurological illnesses or many others which are " self-identified " conditions. The process stinks. The fact every state handles it differently is absurd. Texas for instance approves a much lower percentage initially but has a high percentage accepted on appeal. No sense to that. Funny how our situations change the way we see it too. I personally would rather them risk approving some who didn't deserve it and making it easier for those who do. But for much of our society the belief is that disability is abused and most of the people on it don't deserve it. For any who ever watch Judge Judy, I haven't seen anyone on her show yet who was on disability that she didnt condemn. Unfortunately, many share her views. See you have to err in one direction or the other. Waiting for their approval was pure torture for me and as stressful as anything I've ever encountered. And thats even though I had an attorney handling it and was approved without problems. I have a good friend who is bi-polar and as deserving of disability as anyone could be. More disabled than most with physical conditions. But there is only the opinion of five doctors and the huge risk of suicide or self destructive behavior. But no tumor you can x-ray. We ultimately jump through the hoops. What annoys me even more is the doctors who say it won't be approved and put forth little effort on the patient's behalf, discouraging you from even applying or the ones who don't reply to requests from social security. I don't know a single one of us who wouldn't rather be in condition to work. We need changes in doctors knowledge, in social security, and in the general population's view that the disability roster is filled with undeserving people. We're not seeking some gift, but simply what we need and deserve and paid back from funds contributed in our behalf. Yes, social security did have to start paying me earlier than if I'd worked to retirement. But they'll pay me 5 years probably instead of 15. I share your frustration with the system. Now, I don't share your anger at the 40 foot cord (well mine is 75+4 so 79 feet). > > > > > > > > > > > > > > > > > > From: Paradis3 (AT) aol (DOT) com Paradis3 (AT) aol (DOT) com> > > > > > > Subject: Re:tired > > > > > > To: Breathe-Support@ yahoogroups. com > > > > > > Date: Wednesday, September 16, 2009, 5:12 AM > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > >   You have to be aggressive. I can't believe > > > some of > > > > these doctors. My first pulmonologist got the diagnosis of > > IPF, > > > > gave it to me, said it was " very advanced " and sat back in his > chair > > > and > > > > said basically nothing could be done. I would not qualify > for > > a > > > > lung transplant, there was no pulmonary rehab available, nothing > > could > > > > be done. So I went home, read up on it, found out about > > > pulmonary > > > > rehab, found out about drug trials to ask him about, found out > more > > > > about transplants, went back and asked him about these things and > he > > > > just wasn't interested in helping. And he's a senior doc, > has > > > > fellowships, great credentials, the whole deal. > > > > > >  So I changed pulmo dudes. Now I'm approved for a > > > > transplant, I've had pulmonary therapy and go to the gym 4 times a > > > week, > > > > I'm taking NAC and some other things that might help, and I've > lived > > a > > > > year longer already than the first guy thought I would! > > > > > >   DO NOT HESITATE TO CHANGE DOCTORS!! > > > > > >  > > > > > > Bill C. IPF 10/08 > > > > > > N.E. PA > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Bruce, I understand, I was just so angry last night, one of the bad ones where everyother word out of my mouth was Why me. I'm not usually like that but I seem to have a very VERY low tolerance lately for studpidity of any kind. And I KNOW that there has to be a "cut off point" so to speak somewhere but since I deal with the IRS and Departments of Revenue and Labor everyday I understand the rules are written by people who don't want to ever pay a dime to anyone. I need to go get coffee now so I don't get myself all worked up all over again. Have a good day everyone! Dyane ipf 02> > > > > > >> > > > > > >> > > > > > > From: Paradis3 (AT) aol (DOT) com Paradis3 (AT) aol (DOT) com>> > > > > > > Subject: Re:tired> > > > > > > To: Breathe-Support@ yahoogroups. com> > > > > > > Date: Wednesday, September 16, 2009, 5:12 AM> > > > > > >> > > > > > >> > > > > > > Â> > > > > > >> > > > > > >> > > > > > >   You have to be aggressive. I can't> believe> > > > some of> > > > > these doctors. My first pulmonologist got the diagnosis of> > > IPF,> > > > > gave it to me, said it was "very advanced" and sat back in his> > chair> > > > and> > > > > said basically nothing could be done. I would not qualify> > for> > > a> > > > > lung transplant, there was no pulmonary rehab available, nothing> > > could> > > > > be done. So I went home, read up on it, found out about> > > > pulmonary> > > > > rehab, found out about drug trials to ask him about, found out> > more> > > > > about transplants, went back and asked him about these things> and> > he> > > > > just wasn't interested in helping. And he's a senior doc,> > has> > > > > fellowships, great credentials, the whole deal.Â> > > > > > >  So I changed pulmo dudes. Now I'm approved for> a> > > > > transplant, I've had pulmonary therapy and go to the gym 4 times> a> > > > week,> > > > > I'm taking NAC and some other things that might help, and I've> > lived> > > a> > > > > year longer already than the first guy thought I would!> > > > > > >   DO NOT HESITATE TO CHANGE DOCTORS!!> > > > > > > Â> > > > > > > Bill C. IPF 10/08> > > > > > > N.E. PA> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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