Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Amen to that Dyane > > I have found that part of this disease seems to have nothing to do with the physical aspects. There is defiantly a learning curve with this disease. I was DX in 06 and went thru the process of learning all I could and what I was looking at down the road. Three years and two Docs’ later I learned that prednisone was NOT for me I am still trying to get off that #@#P just in the last 2 months I am on the board learning how to deal with o2. This week starts the learning process of trying to figure out Disability and Medical insurance. I wish my doc would read the postings from the last year and get up to speed and learn what is really going on from the people that live with this everyday and not have some ideology out of a book. Just the responses about the real life situations of SSID have helped. I have looked and there seems to be no other place that I can find to get the information about the “real†side of applying for SSID. I am not sure what my > next Issue is or will be? but I know will be on the board looking for direction ? So Again thanks to all, for sharing your experiences, thoughts and solutions.  >  > 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.†> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Walt I do recommend being familiar with this section of their respiratory guidelines. http://www.socialsecurity.gov/disability/professionals/bluebook/3.00-Res\ piratory-Adult.htm However, I caution that many who don't appear to meet those charts, still get disability. Send them information on every condition you have. It's often the total that does it. Better too much than too little, although some concise doctor's letters are very helpful. As an aside though, while I've known people to be approved without meeting the table values, I've yet to know anyone who met the tables in section 3.02 on that page not being approved. It is hard for them to argue with their own published guidelines. You never know what pushes them over the edge in your favor. When I visited the social security doctor, he was very concerned about one medical issue that to me was relatively minor. He even went so far as to recommend going to UTSW for another opinion. I was a bit scared of the thought of going to their doctors, but I found them quite objective and caring. > > I have found that part of this disease seems to have nothing to do with the physical aspects. There is defiantly a learning curve with this disease. I was DX in 06 and went thru the process of learning all I could and what I was looking at down the road. Three years and two Docs’ later I learned that prednisone was NOT for me I am still trying to get off that #@#P just in the last 2 months I am on the board learning how to deal with o2. This week starts the learning process of trying to figure out Disability and Medical insurance. I wish my doc would read the postings from the last year and get up to speed and learn what is really going on from the people that live with this everyday and not have some ideology out of a book. Just the responses about the real life situations of SSID have helped. I have looked and there seems to be no other place that I can find to get the information about the “real†side of applying for SSID. I am not sure what my > next Issue is or will be? but I know will be on the board looking for direction ? So Again thanks to all, for sharing your experiences, thoughts and solutions.  >  > 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.†> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Mr. Bruce Thank you. That was helpful and gives me something else that I did not consider, but makes since. 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.†Subject: Re: SchooledTo: Breathe-Support Date: Thursday, September 17, 2009, 12:04 PM WaltI do recommend being familiar with this section of their respiratoryguidelines.http://www.socialse curity.gov/ disability/ professionals/ bluebook/ 3.00-Res\piratory-Adult. htmHowever, I caution that many who don't appear to meet those charts,still get disability. Send them information on every condition you have.It's often the total that does it. Better too much than too little,although some concise doctor's letters are very helpful. As an asidethough, while I've known people to be approved without meeting the tablevalues, I've yet to know anyone who met the tables in section 3.02 onthat page not being approved. It is hard for them to argue with theirown published guidelines.You never know what pushes them over the edge in your favor. When Ivisited the social security doctor, he was very concerned about onemedical issue that to me was relatively minor. He even went so far as torecommend going to UTSW for another opinion. I was a bit scared of thethought of going to their doctors, but I found them quite objective andcaring.>> I have found that part of this disease seems to have nothing to dowith the physical aspects. There is defiantly a learning curve with thisdisease. I was DX in 06 and went thru the process of learning all Icould and what I was looking at down the road. Three years and twoDocs’ later I learned that prednisone was NOT for me I am stilltrying to get off that #@#P just in the last 2 months I am on the boardlearning how to deal with o2. This week starts the learning process oftrying to figure out Disability and Medical insurance. I wish my docwould read the postings from the last year and get up to speed and learnwhat is really going on from the people that live with this everyday andnot have some ideology out of a book. Just the responses about the reallife situations of SSID have helped. I have looked and there seems to beno other place that I can find to get the information about the“realâ€� side of applying for SSID. I am not sure what my> next Issue is or will be? but I know will be on the board looking fordirection ? So Again thanks to all, for sharing your experiences,thoughts and solutions. Â> Â> Walt on Whidbey IPF,Nsip.Uip. 06>>>> Courage doesn't always roar. Sometimes courage is the quiet voice atthe end of the day saying, "I will try again tomorrow.â€�> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2009 Report Share Posted September 18, 2009 Walt,How very true! We are learning and managing our disease. There is no way you can avoid managing a chronic condition. We have to be proactive in our day-to-day management, in order give ourselves a normal and healthy life as is possible. Most doctors, even if they wanted to, don't have time to do research on IPF or any other disease they treat. And even though they may be a specialist in lung disease, they are seeing and treating a multitude of patients with various lung diseases. C_53_Familial IPF_5/09WashingtonTo: Lung <Breathe-Support >Sent: Thursday, September 17, 2009 11:22:34 AMSubject: Schooled I have found that part of this disease seems to have nothing to do with the physical aspects. There is defiantly a learning curve with this disease. I was DX in 06 and went thru the process of learning all I could and what I was looking at down the road. Three years and two Docs’ later I learned that prednisone was NOT for me I am still trying to get off that #@#P just in the last 2 months I am on the board learning how to deal with o2. This week starts the learning process of trying to figure out Disability and Medical insurance. I wish my doc would read the postings from the last year and get up to speed and learn what is really going on from the people that live with this everyday and not have some ideology out of a book. Just the responses about the real life situations of SSID have helped. I have looked and there seems to be no other place that I can find to get the information about the “real†side of applying for SSID. I am not sure what my next Issue is or will be? but I know will be on the board looking for direction ? So Again thanks to all, for sharing your experiences, thoughts and solutions. 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.†Quote Link to comment Share on other sites More sharing options...
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