Re: are you still working?

[Guest guest]

I cant beleive you still working.

When my doctor diagnosed me, she told me i coulndt work!

She ordered oxygen for me and then because i had to carry my oxygen tank everywhere i called my employer to tell them about my oxygen, but I told them i could work okay.

Well, they told me i needed a letter from my doctor where it says i can work. The doctor refused to give me the letter.I had to quit my job.

Subject: Re: Lumping of the diseasesTo: Breathe-Support Date: Saturday, January 2, 2010, 5:03 PM

,I have IPF AND Sarcoidosis and they were both diagnosed at the same time. I was first diagnosed with IPF by my local Dr. I went to Mayo Clinic for further evaluation and treatment. They said I had sarcoidosis and after a open lung biopsy, IPF. They told me that IPF and sarcoidosis are separate diseases and one does not cause the other. At first, the sarcodosis was listed as my primary and IPF as my secondary disease but during the last 4 years it has reversed and now I am diagnosed as severe IPF. In 2003, I was evaluated for a transplant and the head of the transplant evaluation team said that from my symptoms and tests, he would not feel I have PF. Except the biopsy of tissue shows I do. The "ground glass granuals" were prominant on my x-rays but gradually, the fibrosis has taken over. I don't focus on the sarcoid much because the IPF has become primary and the treatment has been the same for both diseases for me. Although

I am on 6-8 liters of O2 24/7, I am still working as a School Social Worker at a middle school. I think I will have to stop sometime in the next year as it is becoming so exhausting to work full-time. I have not told the "general public" that I have IPF but only that I have Sarcoid since it is not necessaarily a terminal illness. I was and are am still afraid of the repercussions from a few of the people in the school district's administration and how miserable they will make my life if they knew I had a terminal illness. I will have to "come out of the closet" soon though and I will go on medical disability when I do.What study does anyone have that states that Sarcoid causes IPF? I would like to read it as I was always under the impression that Sarcoid does not cause PF. Although for me it is no big deal as I have both anyway.Jim ,IPF and Sarcoidosis, October 2000Pulmonary Hypertension 200757 years

old> >> >> > From: Bruce <brucemoreland@ ...>> > Subject: Lumping of the diseases> > To: Breathe-Support@ yahoogroups. com> > Date: Saturday, January 2, 2010, 10:29 AM> >> > > >> > I found it interesting to read some more date

published by the> > University of Pittsburgh ILD center. Here are the patients who went to> > their center from January 1-October 14, 2009.> >> > Now, tossing out some more interesting information (at least to> > me) and> > that is a breakdown of the patients who went to the University of> > Pittsburgh ILD center from January 1-October 14 of last year.> >> > IPF UIP 574> > Sarcoidosis 502> > PF Rheumatoid Condition 277> > ILD Ruled Out 179> > Under Evaluation 179> > Hypersensitivity Pneumonitis 51> > PF of other Causes 49> > Other IIP's 44> > Pulmonary Hypertension 33> > Occupational Diseases 26> >> > So, only 30% of the patients had IPF UIP.> >> > I'm surprised we don't talk more here about Sarcoidosis and that makes> > me

think either they're going to their own forum and/or its being> > underdiagnosed by many doctors. Also note that of the patients sent to> > the ILD center approximately 10% were determined not to have an> > ILD and> > another 10% haven't been determined yet.> >> >> >>

[Guest guest]

,

That was terrible for your employer and your doctor to put you in that bind that

caused you to quit work. That is why I haven't told them about my IPF. They

may use it against me. So far, they are letting me work as long as I can keep

doing my job. I have missed a lot of work the past 3 years and I think they are

losing their patience. But I hope I can finish out the school year.

Jim

> > >

> > >

> > > From: Bruce <brucemoreland@ ...>

> > > Subject: Lumping of the diseases

> > > To: Breathe-Support@ yahoogroups. com

> > > Date: Saturday, January 2, 2010, 10:29 AM

> > >

> > >

> > >

> > > I found it interesting to read some more date published by the

> > > University of Pittsburgh ILD center. Here are the patients who went to

> > > their center from January 1-October 14, 2009.

> > >

> > > Now, tossing out some more interesting information (at least to

> > > me) and

> > > that is a breakdown of the patients who went to the University of

> > > Pittsburgh ILD center from January 1-October 14 of last year.

> > >

> > > IPF UIP 574

> > > Sarcoidosis 502

> > > PF Rheumatoid Condition 277

> > > ILD Ruled Out 179

> > > Under Evaluation 179

> > > Hypersensitivity Pneumonitis 51

> > > PF of other Causes 49

> > > Other IIP's 44

> > > Pulmonary Hypertension 33

> > > Occupational Diseases 26

> > >

> > > So, only 30% of the patients had IPF UIP.

> > >

> > > I'm surprised we don't talk more here about Sarcoidosis and that makes

> > > me think either they're going to their own forum and/or its being

> > > underdiagnosed by many doctors. Also note that of the patients sent to

> > > the ILD center approximately 10% were determined not to have an

> > > ILD and

> > > another 10% haven't been determined yet.

> > >

> > >

> > >

> >

>

[Guest guest]

I also don't tell my employer for fear of losing my job. Presently my appraisals are very high, but that does not mean anything if they won't you to leave. I try to schedule hours of vacation to go to the docs. It is another added pressure.

To: Breathe-Support Sent: Sun, January 3, 2010 1:10:18 AMSubject: Re: are you still working?

,That was terrible for your employer and your doctor to put you in that bind that caused you to quit work. That is why I haven't told them about my IPF. They may use it against me. So far, they are letting me work as long as I can keep doing my job. I have missed a lot of work the past 3 years and I think they are losing their patience. But I hope I can finish out the school year. Jim> > >> > >> > > From: Bruce <brucemoreland@ ...>> > > Subject: Lumping of the diseases> > > To: Breathe-Support@ yahoogroups. com> > > Date: Saturday, January 2, 2010, 10:29 AM> > >> > > > > >> > > I found it interesting to read some more date published by the> > > University of Pittsburgh ILD center. Here are the patients who went to> > > their center from January 1-October 14, 2009.> > >> > > Now, tossing out some more interesting information (at least

to> > > me) and> > > that is a breakdown of the patients who went to the University of> > > Pittsburgh ILD center from January 1-October 14 of last year.> > >> > > IPF UIP 574> > > Sarcoidosis 502> > > PF Rheumatoid Condition 277> > > ILD Ruled Out 179> > > Under Evaluation 179> > > Hypersensitivity Pneumonitis 51> > > PF of other Causes 49> > > Other IIP's 44> > > Pulmonary Hypertension 33> > > Occupational Diseases 26> > >> > > So, only 30% of the patients had IPF UIP.> > >> > > I'm surprised we don't talk more here about Sarcoidosis and that makes> > > me think either they're going to their own forum and/or its being> > > underdiagnosed by many doctors. Also note that of the patients sent

to> > > the ILD center approximately 10% were determined not to have an> > > ILD and> > > another 10% haven't been determined yet.> > >> > >> > >> >>

[Guest guest]

Telling or not telling an employer is a choice each of you has to make.

However, I did want to toss a little additional information for you to

think about. The Americans with Disabilities Act applies to any

employers with 15 or more employees. Some states also have additional

laws.

Under this act, your employer is required to make reasonable

accommodations for your disability. However, you must inform them of the

condition and the accommodations necessary for you to do your job. If

you don't inform them of your condition then they can't be held to the

requirements of the law. Therefore, if your condition does impact your

performance they can't be held accountable for a condition you never

told them about. The moment you inform them of your condition and the

accomodations appropriate they are subject to a higher level of scrutiny

and terminating you actually becomes harder. Now small companies may be

less amenable than larger ones. But, let me assure you a larger company

is going to be concerned about complying once you call it to their

attention. Now, I also recognize that they may find other ways of trying

to dismiss you, but they can do that anyway.

> > > >

> > > >

> > > > From: Bruce <brucemoreland@ ...>

> > > > Subject: Lumping of the diseases

> > > > To: Breathe-Support@ yahoogroups. com

> > > > Date: Saturday, January 2, 2010, 10:29 AM

> > > >

> > > >

> > > >

> > > > I found it interesting to read some more date published by the

> > > > University of Pittsburgh ILD center. Here are the patients who

went to

> > > > their center from January 1-October 14, 2009.

> > > >

> > > > Now, tossing out some more interesting information (at least to

> > > > me) and

> > > > that is a breakdown of the patients who went to the University

of

> > > > Pittsburgh ILD center from January 1-October 14 of last year.

> > > >

> > > > IPF UIP 574

> > > > Sarcoidosis 502

> > > > PF Rheumatoid Condition 277

> > > > ILD Ruled Out 179

> > > > Under Evaluation 179

> > > > Hypersensitivity Pneumonitis 51

> > > > PF of other Causes 49

> > > > Other IIP's 44

> > > > Pulmonary Hypertension 33

> > > > Occupational Diseases 26

> > > >

> > > > So, only 30% of the patients had IPF UIP.

> > > >

> > > > I'm surprised we don't talk more here about Sarcoidosis and that

makes

> > > > me think either they're going to their own forum and/or its

being

> > > > underdiagnosed by many doctors. Also note that of the patients

sent to

> > > > the ILD center approximately 10% were determined not to have an

> > > > ILD and

> > > > another 10% haven't been determined yet.

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

When I first felt that I could no longer continue to work full time, I went to my employer with a letter from my doctor and applied for FMLA.  I was in the process of being approved for SSDI so I did not want to be paid and therefore did not request leave of absence or short term leave.  I knew that down the road I might need both.  I explained to my manager that I needed some accommodations and explained my illness and what I needed to be able to continue to work part time. Having previously had a business with over 100 employees I knew all about ADA and knew that they could not refuse my request as long as it was reasonable .  I had no problem being accommodated.  In fact, my company has gone beyond their requirements to help me stay at work.  They schedule me to work 20 hours a week and I'm allowed to come and go anywhere within that 20 hours as I need

to. I never seem to make it to the 20 hours, but they are ok with that too.. They "fetch" anything I need so I don't have to walk the distance of the store and if I do, they give me a riding cart.  They have given me a small office to work in so I can be alone and not in the community office with a lot of people coming and going.  I give them a status update on my workload when I leave and if something is left to be finished, they find someone to finish it.  I'm given help when I ask for it and left alone when I'm not feeling well.  I love it!They allow me to come in late if I have a bad morning, or have a doctors appointment or leave early for the same reasons. I have been working 4 days a week and am getting ready to go to 3 days.  I don't expect to have any problems.  There are options available if you ask and if the business has more than 15 people, they must give you

those options.Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....Subject: Re: are you still working?To: Breathe-Support Date: Sunday, January 3, 2010, 1:54 PM

 

Telling or not telling an employer is a choice each of you has to make.

However, I did want to toss a little additional information for you to

think about. The Americans with Disabilities Act applies to any

employers with 15 or more employees. Some states also have additional

laws.

Under this act, your employer is required to make reasonable

accommodations for your disability. However, you must inform them of the

condition and the accommodations necessary for you to do your job. If

you don't inform them of your condition then they can't be held to the

requirements of the law. Therefore, if your condition does impact your

performance they can't be held accountable for a condition you never

told them about. The moment you inform them of your condition and the

accomodations appropriate they are subject to a higher level of scrutiny

and terminating you actually becomes harder. Now small companies may be

less amenable than larger ones. But, let me assure you a larger company

is going to be concerned about complying once you call it to their

attention. Now, I also recognize that they may find other ways of trying

to dismiss you, but they can do that anyway.

> > > >

> > > >

> > > > From: Bruce <brucemoreland@ ...>

> > > > Subject: Lumping of the diseases

> > > > To: Breathe-Support@ yahoogroups. com

> > > > Date: Saturday, January 2, 2010, 10:29 AM

> > > >

> > > >

> > > >

> > > > I found it interesting to read some more date published by the

> > > > University of Pittsburgh ILD center. Here are the patients who

went to

> > > > their center from January 1-October 14, 2009.

> > > >

> > > > Now, tossing out some more interesting information (at least to

> > > > me) and

> > > > that is a breakdown of the patients who went to the University

of

> > > > Pittsburgh ILD center from January 1-October 14 of last year.

> > > >

> > > > IPF UIP 574

> > > > Sarcoidosis 502

> > > > PF Rheumatoid Condition 277

> > > > ILD Ruled Out 179

> > > > Under Evaluation 179

> > > > Hypersensitivity Pneumonitis 51

> > > > PF of other Causes 49

> > > > Other IIP's 44

> > > > Pulmonary Hypertension 33

> > > > Occupational Diseases 26

> > > >

> > > > So, only 30% of the patients had IPF UIP.

> > > >

> > > > I'm surprised we don't talk more here about Sarcoidosis and that

makes

> > > > me think either they're going to their own forum and/or its

being

> > > > underdiagnosed by many doctors. Also note that of the patients

sent to

> > > > the ILD center approximately 10% were determined not to have an

> > > > ILD and

> > > > another 10% haven't been determined yet.

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

Aren't we all protected by the Family Medical Leave Act (FMLA)? I think it applies to all employers/employees.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Sun, January 3, 2010 5:41:44 AMSubject: Re: Re: are you still working?

I also don't tell my employer for fear of losing my job. Presently my appraisals are very high, but that does not mean anything if they won't you to leave. I try to schedule hours of vacation to go to the docs. It is another added pressure.

From: alphajkw <alphajkw (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, January 3, 2010 1:10:18 AMSubject: Re: are you still working?

,That was terrible for your employer and your doctor to put you in that bind that caused you to quit work. That is why I haven't told them about my IPF. They may use it against me. So far, they are letting me work as long as I can keep doing my job. I have missed a lot of work the past 3 years and I think they are losing their patience. But I hope I can finish out the school year. Jim> > >> > >> > > From: Bruce <brucemoreland@ ...>> > > Subject: Lumping of the diseases> > > To: Breathe-Support@ yahoogroups. com> > > Date: Saturday, January 2, 2010, 10:29 AM> > >> > > > > >> > > I found it interesting to read some more date published by the> > > University of Pittsburgh ILD center. Here are the patients who went to> > > their center from January 1-October 14, 2009.> > >> > > Now, tossing out some more interesting information (at least

to> > > me) and> > > that is a breakdown of the patients who went to the University of> > > Pittsburgh ILD center from January 1-October 14 of last year.> > >> > > IPF UIP 574> > > Sarcoidosis 502> > > PF Rheumatoid Condition 277> > > ILD Ruled Out 179> > > Under Evaluation 179> > > Hypersensitivity Pneumonitis 51> > > PF of other Causes 49> > > Other IIP's 44> > > Pulmonary Hypertension 33> > > Occupational Diseases 26> > >> > > So, only 30% of the patients had IPF UIP.> > >> > > I'm surprised we don't talk more here about Sarcoidosis and that makes> > > me think either they're going to their own forum and/or its being> > > underdiagnosed by many doctors. Also note that of the patients sent

to> > > the ILD center approximately 10% were determined not to have an> > > ILD and> > > another 10% haven't been determined yet.> > >> > >> > >> >>

[Guest guest]

Hi , I've been thinking of calling you but I don't know when you work. You are still working, aren't you? I loved meeting you and spending time with you. I had a very hard time getting a shuttle after you left. You may have read about it.Beverley Joy,71,PF, Hypersensitivity Pneumonitis, Birds and mold 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

What a long signature but for a wonderful groupSubject: Re: Re: are you still working?To: Breathe-Support Date: Monday, January 4, 2010, 8:11 PM

Aren't we all protected by the Family Medical Leave Act (FMLA)? I think it applies to all employers/employees .

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

From: Gale More <gale.more (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, January 3, 2010 5:41:44 AMSubject: Re: Re: are you still working?

I also don't tell my employer for fear of losing my job. Presently my appraisals are very high, but that does not mean anything if they won't you to leave. I try to schedule hours of vacation to go to the docs. It is another added pressure.

From: alphajkw <alphajkw (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, January 3, 2010 1:10:18 AMSubject: Re: are you still working?

,That was terrible for your employer and your doctor to put you in that bind that caused you to quit work. That is why I haven't told them about my IPF. They may use it against me. So far, they are letting me work as long as I can keep doing my job. I have missed a lot of work the past 3 years and I think they are losing their patience. But I hope I can finish out the school year. Jim> > >> > >> > > From: Bruce <brucemoreland@ ...>> > > Subject: Lumping of the diseases> > > To: Breathe-Support@ yahoogroups. com> > > Date: Saturday, January 2, 2010, 10:29 AM> > >> > > > > >> > > I found it interesting to read some more date published by the> > > University of Pittsburgh ILD center. Here are the patients who went to> > > their center from January 1-October 14, 2009.> > >> > > Now, tossing out some more interesting information (at least

to> > > me) and> > > that is a breakdown of the patients who went to the University of> > > Pittsburgh ILD center from January 1-October 14 of last year.> > >> > > IPF UIP 574> > > Sarcoidosis 502> > > PF Rheumatoid Condition 277> > > ILD Ruled Out 179> > > Under Evaluation 179> > > Hypersensitivity Pneumonitis 51> > > PF of other Causes 49> > > Other IIP's 44> > > Pulmonary Hypertension 33> > > Occupational Diseases 26> > >> > > So, only 30% of the patients had IPF UIP.> > >> > > I'm surprised we don't talk more here about Sarcoidosis and that makes> > > me think either they're going to their own forum and/or its being> > > underdiagnosed by many doctors. Also note that of the patients sent

to> > > the ILD center approximately 10% were determined not to have an> > > ILD and> > > another 10% haven't been determined yet.> > >> > >> > >> >>

[Guest guest]

No, we're not. For private companies, requires 50 or more employees

within 75 miles. Also, requires 12 months working there and 1250 hours

in the past year.

And, of course, doesn't provide for any pay during the leave. All, FMLA

ultimately does is protects a job for you to return to and provides

continuation of benefits.

It also doesn't provide for missing several different periods or blocks

of time. In some situations, blocks may be taken but it's designed for a

period of leave, applied for in advance. It is not designed to cover

intermittent or excessive absences.

The Americans with Disabilities Act actually is the law which provides

more in the way of job protection for someone with a disability such as

PF. Ultimately, though, even under it, a lot is dependent on the

employer and their intent. For most of us being wrongfully terminated

and having a legal right to sue and recover under an act such as ADA is

of little true benefit. First, we often can't afford to live in the

meantime. Second, we can't afford the legal costs of suing. Third, we

may not be alive at the point we finally win the case and recovery.

While there are employers who attempt to treat employees right by the

rules and even beyond, there are others who manipulate and dare one to

sue.

Still, you have more protection under ADA by telling the employer than

you do by not telling them. If they haven't been informed or told the

accommodations you need, they can't be held accountable for failing to

provide them.

> > > >

> > > >

> > > > From: Bruce <brucemoreland@ ...>

> > > > Subject: Lumping of the diseases

> > > > To: Breathe-Support@ yahoogroups. com

> > > > Date: Saturday, January 2, 2010, 10:29 AM

> > > >

> > > >

> > > >

> > > > I found it interesting to read some more date published by the

> > > > University of Pittsburgh ILD center. Here are the patients who

went to

> > > > their center from January 1-October 14, 2009.

> > > >

> > > > Now, tossing out some more interesting information (at least to

> > > > me) and

> > > > that is a breakdown of the patients who went to the University

of

> > > > Pittsburgh ILD center from January 1-October 14 of last year.

> > > >

> > > > IPF UIP 574

> > > > Sarcoidosis 502

> > > > PF Rheumatoid Condition 277

> > > > ILD Ruled Out 179

> > > > Under Evaluation 179

> > > > Hypersensitivity Pneumonitis 51

> > > > PF of other Causes 49

> > > > Other IIP's 44

> > > > Pulmonary Hypertension 33

> > > > Occupational Diseases 26

> > > >

> > > > So, only 30% of the patients had IPF UIP.

> > > >

> > > > I'm surprised we don't talk more here about Sarcoidosis and that

makes

> > > > me think either they're going to their own forum and/or its

being

> > > > underdiagnosed by many doctors. Also note that of the patients

sent to

> > > > the ILD center approximately 10% were determined not to have an

> > > > ILD and

> > > > another 10% haven't been determined yet.

> > > >

> > > >

> > > >

> > >

> >

>