Re: Who's Still Working? I am, but I'm tired....any suggestions?

August 19, 2008

How are your PFT's? They are the primary factor in social security

determination. What other physical problems do you have?

The questions then are can you work without endangering your health,

perform the job well, and can you do so without compromising any

treatment you might need? Do you take any medications which impact

working or are you not taking any that you should, but would interfere

with work?

As to the travel, your employer will be required to make reasonable

accomodation under ADA which could include scheduling and even extend to

providing a portable concentrator or the additional batteries needed.

I was already not working due to other conditions. Many here work. I

can't imagine doing so at my level of the disease.

None of us can no more without being in your shoes. A lot depends on the

degree of your scleroderma and fibrosis. Generally, I read that with

scleroderma you're encouraged to keep as active as possible. With

fibrosis remaining active is good but not taking proper care and

protecting your lungs and body is not good.

As an auditor I can only imagine the difficulty in achieving a balance.

With the hours many firms require its not a healthy profession for

anyone. Hopefully thats not your situation. As to keeping your

performance up, 40 hour weeks are bad enough but the typical 50-60 in

the auditing profession are too much for those with health issues in

most cases.

Do you not have any disability insurance through your employer? If so,

the requirements of insurers are generally far less rigid than social

security and would leave open the options of a different kind of work or

part time while protecting income. Social security requires you to not

be able to have gainful employment in any profession. Insurance policies

are generally in your own profession for two years or so and then any.

I can't imagine facing what you've dealt with at such a young age and

wish you luck as you think through the alternatives and determine what

is right for you. We can only share our thoughts but no one but you can

really know what is best for you.

>

> Hi,

>

> I'm new to group, but not so new to the diagnosis. I am 34 yrs old and

> was diagnosed with Scleroderma (CREST) when i was 19. I've had some

> struggles with my health, and have had some lung fibrosis since

> the '90s, but in Dec. 2006 breathing became hard for me. I've been on

> oxygen since Aug. 2007. I work as an auditor and am required to travel

> some times. I was refused boarding by an airline in Jan. 2008, because

> I was trying to fly without my concentrator....I'd called b4 the

flight

> to inquire about o2 concentrators, but decided not to bring it b/c the

> home health care co. refused to provide me with 2 batteries. Anyway,

> when i work all day, I'm tired and don't feel like doing anything

> else. I know I'm being looked at differently now that I'm tied to o2.

> I'm hoping to get better, but I've hoping to get better now for almost

> 2 yrs. Should I apply for SSDI or try working part-time or something

> like that at first? I don't want to give up, but it's getting hard to

> keep up my performance at work. Sorry for the long post.

>

August 19, 2008

:

My name is Bob. I am also new to the board. I have not introduced myself as yet, so I will do so while I answer your post.

I am 63 and was first dx with COPD in 1996 and then with PF in 1997. Both were mild and fortunately, ubtil recently, were not that restrictive. It would take some time for me to be short of breath. Then in August 2005, I had a massive heart attack and since then have had a tougher time. My PF was caused by methotrexate and I was told that since I stopped taking the drug, my PF would mot spread. Something has caused me to become SOB, either the PF or the heart attack or a combination. I am still trying to determine what the causes are.

I qualified for SSDI in 2007, but found out that I could not afford to stay on it. I am an accountant by trade and went back to college when I was 55. I completed my bachelor's and went on to complete my MBA, but with two sons in college also, my tuition went on student loans. What with my mortgage, loans and just the cost of living, I had to return to work. If I could afford it, I would stay home. I am close to going on oxygen now and I really do not want to use it at work. By the time I get home at night I collapse on the chair and stay there til bed time!

I have been married for 40 years and have two sons. We live outside Chicago. The oldest was married this past March 29 and the other son will be married September 6th! My wife is going into a deep depression! She does not want the boys to leave the nest, but hopefully, she will get used to it. I am hoping that my health can stabilize and we will have a little time to enjoy ourselves.

What this all comes down to, is that if you can afford to be home and you do not have enough energy for work, then take the SSDI. Only you can make that decision. You can still work part time on SS - or at least that was the case for me, but then I was 61 or 62 by the time I went on and I can not say whether the rules are the same for all.

I wish you the best and you will find comfort and good advice from others on the board.

Take care,

Bob

Who's Still Working? I am, but I'm tired....any suggestions?

Hi,I'm new to group, but not so new to the diagnosis. I am 34 yrs old and was diagnosed with Scleroderma (CREST) when i was 19. I've had some struggles with my health, and have had some lung fibrosis since the '90s, but in Dec. 2006 breathing became hard for me. I've been on oxygen since Aug. 2007. I work as an auditor and am required to travel some times. I was refused boarding by an airline in Jan. 2008, because I was trying to fly without my concentrator. ...I'd called b4 the flight to inquire about o2 concentrators, but decided not to bring it b/c the home health care co. refused to provide me with 2 batteries. Anyway, when i work all day, I'm tired and don't feel like doing anything else. I know I'm being looked at differently now that I'm tied to o2. I'm hoping to get better, but I've hoping to get better now for almost 2 yrs. Should I apply for SSDI or try working part-time or something

like that at first? I don't want to give up, but it's getting hard to keep up my performance at work. Sorry for the long post.

August 19, 2008

Hi ,

I'm sorry you are having such problems at such an early age. Strange that

questions on this board seem to always be appropriate with the happenings in my

life. I am 58 years old and was dx Mid 2007 with Asthma and PF.

I was pretty good until March 2008 when my sob became worse as well as a

horrible cough. Diagnosis changed to IPF and further testing revealed

Sarcoidosis. I've been under treatment for Sarcoid since May.

I had another check up with my pulmo, PFT, gallium scan and CT Scan last week

with poor results. Yesterday during a routine followup visit with my pcp, my

sats dropped while sitting in the exam room. She had me do a short, slow stroll

down her corridor with continued monitoring and again sit in the exam room for

an additional 15 minutes. Results---oxygen prescribed and delivered today.

I'll be using 2L continuous as needed and on exertion. She advised me that it

was time for me to consider disability.

Today I asked my work to cut me back to 4 days a week and they agreed. I too am

exhausted after a full days work and do nothing else once I return home every

evening. If I could afford the insurance, I'd quit tomorrow and apply for SSDI.

For me, working provides me a pretty good insurance and with this illness, it

has been a godsend. I think mentally, I need to keep working as long as

possible.

Is it possible that you could " cut back " at work? I hope you find a workable

solution. Stress is one thing we all can do without!

Good luck,

Roxanne, 58, South Carolina

2006 Asthma/ PF

2008 IPF/ Sarcoidosis/Gerd

Lady Slipper Orchid

>

> Subject: Who's Still Working? I am, but I'm tired....any

suggestions?

> To: Breathe-Support

> Date: Tuesday, August 19, 2008, 6:51 PM

> Hi,

>

> I'm new to group, but not so new to the diagnosis. I

> am 34 yrs old and

> was diagnosed with Scleroderma (CREST) when i was 19.

> I've had some

> struggles with my health, and have had some lung fibrosis

> since

> the '90s, but in Dec. 2006 breathing became hard for

> me. I've been on

> oxygen since Aug. 2007. I work as an auditor and am

> required to travel

> some times. I was refused boarding by an airline in Jan.

> 2008, because

> I was trying to fly without my concentrator....I'd

> called b4 the flight

> to inquire about o2 concentrators, but decided not to bring

> it b/c the

> home health care co. refused to provide me with 2

> batteries. Anyway,

> when i work all day, I'm tired and don't feel like

> doing anything

> else. I know I'm being looked at differently now that

> I'm tied to o2.

> I'm hoping to get better, but I've hoping to get

> better now for almost

> 2 yrs. Should I apply for SSDI or try working part-time or

> something

> like that at first? I don't want to give up, but

> it's getting hard to

> keep up my performance at work. Sorry for the long post.

>

August 19, 2008