Re: Want to say hello as I am new here

[Guest guest]

Yes, Ann,

I am on SS Disability. Had to go through a lawyer. Took about a year!

Keep your chin up and stay strong. I just keep on ticking!

Hugs,

Joyce>> > [] Hi, I am new here and just want to say hello to all. I have IPF> since Aug 2003 (At this time they put me on a vent. and told me I was> going to die. I was in Critical Care for 3 weeks with 2 lung bios. > First showed Organized pneumonia and the second acute pneumonia) After> a month in the hospital I went home on constant oxygen 2L. 5 months> later I returned to work only walking with oxygen. Doctor told me they> believed it was auto immune and put me on Cytoxan as well as Predisone> 10 mg. daily. I have tried to wein off Predisone, but I get sick each> time I do.> > I worked until Dec. 2005 and shortness of breath became too difficult> while working 8 hrs. without oxygen. I am now on 4 L oxygen walking or> movment and 3 L resting and sleeping. I have applied for Social> Security Disability and was wondering if anyone here has done so and if> they had good results. I am 58 yrs. old, a widow of 7 years after 27> years of marriage.> > I am looking forward to sharing and visiting with other than walk in the> same shoes as I.> > Thanks,> > Ann>

[Guest guest]

,

I will encourage my husband to read this post. It is possible to do the wash with PF (and the male chromosome)!

Carman

-------------- Original message -------------- I had good luck with my SSI. Retired Aug 04 (56 yrs old) when I went on O2 24/7. Applied the day I left Hospital. Got approved in 3 months. The first check doesn't start till 5 months after disability so got it in Feb of 05. I wrote two long letters for them. One on what my job was and why I couldn't do it now. The other on how bad I was doing the daily chores like having to sit on a stool to unload the dishwasher, rest every two steps carrying up the wash. All these thing help to let some office worker where ever they are understand how bad I was. Also on the forms they wanted I typed Long answers rather than the yes and No's P. (Yes I do the wash for my Wife)happyyellowroses wrote:

Hi, I am new here and just want to say hello to all. I have IPF since Aug 2003 (At this time they put me on a vent. and told me I was going to die. I was in Critical Care for 3 weeks with 2 lung bios. First showed Organized pneumonia and the second acute pneumonia) After a month in the hospital I went home on constant oxygen 2L. 5 months later I returned to work only walking with oxygen. Doctor told me they believed it was auto immune and put me on Cytoxan as well as Predisone 10 mg. daily. I have tried to wein off Predisone, but I get sick each time I do.

I worked until Dec. 2005 and shortness of breath became too difficult while working 8 hrs. without oxygen. I am now on 4 L oxygen walking or movment and 3 L resting and sleeping. I have applied for Social Security Disability and was wondering if anyone here has done so and if they had good results. I am 58 yrs. old, a widow of 7 years after 27 years of marriage.

I am looking forward to sharing and visiting with other than walk in the same shoes as I.

Thanks,

Ann

Yahoo! MailBring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

,

Men are never more attractive than when they are helping with the housework.

Joyce Hi, I am new here and just want to say hello to all. I have IPF since Aug 2003 (At this time they put me on a vent. and told me I was going to die. I was in Critical Care for 3 weeks with 2 lung bios. First showed Organized pneumonia and the second acute pneumonia) After a month in the hospital I went home on constant oxygen 2L. 5 months later I returned to work only walking with oxygen. Doctor told me they believed it was auto immune and put me on Cytoxan as well as Predisone 10 mg. daily. I have tried to wein off Predisone, but I get sick each time I do. > I worked until Dec. 2005 and shortness of breath became too difficult while working 8 hrs. without oxygen. I am now on 4 L oxygen walking or movment and 3 L resting and sleeping. I have applied for Social Security Disability and was wondering if anyone here has done so and if they had good results. I am 58 yrs. old, a widow of 7 years after 27 years of marriage. > I am looking forward to sharing and visiting with other than walk in the same shoes as I.> Thanks,> Ann> > >

[Guest guest]

Ronnie,

I wonder why doctors are unconcerned about rapid heartbeat. Mine is always 100 or so just sitting. When I walk uphill it just feels like it is coming out my neck. Perhaps it is just what happens with lung disease and they see it all the time. ??

Try to overcome the depression. It is so hard some days....especially cloudy days....but every day is a gift from God. There are good days to come. I have had so many good things happen since my diagnosis...4 more grandkids... ....lots of good times with friends and family.

Glad you are here. You are among caring people.

Hugs,

Joyce> > > > > [] Hi, I am new here and just want to say hello> > to all. I have IPF> > since Aug 2003 (At this time they put me on a vent.> > and told me I was> > going to die. I was in Critical Care for 3 weeks> > with 2 lung bios. > > First showed Organized pneumonia and the second> > acute pneumonia) After> > a month in the hospital I went home on constant> > oxygen 2L. 5 months> > later I returned to work only walking with oxygen. > > Doctor told me they> > believed it was auto immune and put me on Cytoxan as> > well as Predisone> > 10 mg. daily. I have tried to wein off Predisone,> > but I get sick each> > time I do.> > > > I worked until Dec. 2005 and shortness of breath> > became too difficult> > while working 8 hrs. without oxygen. I am now on 4> > L oxygen walking or> > movment and 3 L resting and sleeping. I have> > applied for Social> > Security Disability and was wondering if anyone here> > has done so and if> > they had good results. I am 58 yrs. old, a widow of> > 7 years after 27> > years of marriage.> > > > I am looking forward to sharing and visiting with> > other than walk in the> > same shoes as I.> > > > Thanks,> > > > Ann> > > > > > > __________________________________________________>

[Guest guest]

Hey Owen!

Guess what I found! Try this: http://ssa.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm

Click on 3.02 Chronic Pulmonary Insufficiency. This will take you to the charts the social security administration uses to determine this type of disability. Make sure you read it carefully because there are some odd ways of wording the tests. Or maybe it's me. Funny it is called a bluebook for professionals (and really hidden on their website).

My best to you,

Carman

-------------- Original message -------------- Hy and Ann Here's what I'm gonna do - The Social Security people don't just approve or disapprove people -they use a book. Somewhere up above the guy who slaps the rubberstamp onto the paper is someone who's written the book. So what I'm gonna do is write my congresspeople and see if they can't get me a copy of the 'audit guide' or whatever it is they're using. I'd be nice to know for me and the others at our site. My suspicion is that it's based largely on doc test reports and perscriptions. My local SS office said they send the application to the state and it's the same state people who determine eligibility for state disability who the SSAdministration uses. Which doesn't sound right to me but it might be so. I'm not at all that badly off. The only thing I know is that IPF is a progressive disease and I wanted to get into the system as soon as possible. But someone is responsible for approving our applications and they have to have some standards for doing so. Me? I suspect it's test results mostly and I want to find out the numbers. If it does turn out that some state agency is responsible for doing the judging then not only would that be good to know in itself but it'd also be good to know for others in our situation. So can I ask you guys, especially those still working their way through the system, to find out as best you can how you're being judged and keep records and all like that? Then we can get together to try to see to it that everyone gets a fair shake. Thanks, Owen Hi, I am new here and just want to say hello to all. I have IPF since Aug 2003 (At this time they put me on a vent. and told me I was going to die. I was in Critical Care for 3 weeks with 2 lung bios. First showed Organized pneumonia and the second acute pneumonia) After a month in the hospital I went home on constant oxygen 2L. 5 months later I returned to work only walking with oxygen. Doctor told me they believed it was auto immune and put me on Cytoxan as well as Predisone 10 mg. daily. I have tried to wein off Predisone, but I get sick each time I do. > I worked until Dec. 2005 and shortness of breath became too difficult while working 8 hrs. without oxygen. I am now on 4 L oxygen walking or movment and 3 L resting and sleeping. I have applied for Social Security Disability and was wondering if anyone here has done so and if they had good results. I am 58 yrs. old, a widow of 7 years after 27 years of marriage. > I am looking forward to sharing and visiting with other than walk in the same shoes as I.> Thanks,> Ann> > >

[Guest guest]

Ginger

You amaze me because of the trials you have endured in a short time. I get inspired every time you post.

Take care

Joyce >> > > > Hi, I am new here and just want to say hello to all. I have IPF since Aug > 2003 (At this time they put me on a vent. and told me I was going to die. I > was in Critical Care for 3 weeks with 2 lung bios. First showed Organized > pneumonia and the second acute pneumonia) After a month in the hospital I > went home on constant oxygen 2L. 5 months later I returned to work only > walking with oxygen. Doctor told me they believed it was auto immune and put me > on Cytoxan as well as Predisone 10 mg. daily. I have tried to wein off > Predisone, but I get sick each time I do. > I worked until Dec. 2005 and shortness of breath became too difficult while > working 8 hrs. without oxygen. I am now on 4 L oxygen walking or movment and > 3 L resting and sleeping. I have applied for Social Security Disability > and was wondering if anyone here has done so and if they had good results. I > am 58 yrs. old, a widow of 7 years after 27 years of marriage. > I am looking forward to sharing and visiting with other than walk in the > same shoes as I. > Thanks, > Ann> > > Welcome to the group. Sounds like my story. Only I went home with all > the 02 equiptment, juust did not need it....or did not believe I did. I soon > found out different. I am on 2-3 L of 02 sitting, walking, or sleeping. I am > 53 yo, became a widow this last July 4th, after 30 years of marriage. I > applied for Social Security widows benefits and disability. My Pulmonary Dr. stated > that I could no longer work and that my condition was terminal, and it was > all documented. All that info went to the Social Security Administration and a > positive decision was made in my favor. I take a gram of cytoxin every > month. I have done so since September. Saw my Rheumatologist today and she wants > to go with the cytoxin for 1 year...six more months, and see where we are at > that time. She says I am no worse, and the good days certainly out weigh the > bad ones. I will do a PFT and have a CT scan next week to compare results. > This group has been a cool drink in my desert. The empathy and compassion shared > here is refreshing, besides encouraging. Here, hope abounds continually. God > bless you and I have added you to my prayer list. kiss kiss> ~Ginger~>

[Guest guest]

Welcome Ann. My husband's PF started as Organizing Pnuemonia. That was 4 1/2 years ago. He is still working. There is hope.

Carman

-------------- Original message --------------

Hi, I am new here and just want to say hello to all. I have IPF since Aug 2003 (At this time they put me on a vent. and told me I was going to die. I was in Critical Care for 3 weeks with 2 lung bios. First showed Organized pneumonia and the second acute pneumonia) After a month in the hospital I went home on constant oxygen 2L. 5 months later I returned to work only walking with oxygen. Doctor told me they believed it was auto immune and put me on Cytoxan as well as Predisone 10 mg. daily. I have tried to wein off Predisone, but I get sick each time I do.

I worked until Dec. 2005 and shortness of breath became too difficult while working 8 hrs. without oxygen. I am now on 4 L oxygen walking or movment and 3 L resting and sleeping. I have applied for Social Security Disability and was wondering if anyone here has done so and if they had good results. I am 58 yrs. old, a widow of 7 years after 27 years of marriage.

I am looking forward to sharing and visiting with other than walk in the same shoes as I.

Thanks,

Ann