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

[Guest guest]

Hello ,

Welcome to the group, although I'm sorry that you had to find us. I am 39 and have had PF for over 10 years. I also poodled along with some lung disease for a while but found that it got considerably worse in the last couple of years. As I also have a connective tissue disease I stopped working full time over 10 years ago now and have also given up part time work when i was pregnant 6 years ago. I live in england so I can't offer any advice re SSDI, all I can say is that you need to look after YOU. I had to think about my quality of life over how much money I had to spend. It's a difficult decision and one only you can make.

Ironically, now I'm a mother to a happy, healthy nearly 6 year old I'm doing the hardest job I ever have as an at home mum!

Love Ze xx (39) Dermatomyositis, PF etc for years, PH 2008

>> 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. >

[Guest guest]

and Bob,

Sorry I'm late in welcoming you both the the "air family".

As you have already seen we are a very interesting bunch of people.

We are here to listen, share and support you in any way you need.

We also love to just talk about anything at all. Food, weather, travel,

hobbies.

We don't dwell on what we cannot change...our disease.

We try to live our lives the best we can.

Many of us have changed our lives because of this disease...but live

we do!!!!

I'm way older that you . (64)

We've been married for 43 years. My daughter is 34 and the mommy to my

newest grand daughter Sara.( 6 months)

They both bring me joy. My boys are 38( he is the daddy to my

Darah...32 months)) and 28 and they are wonderful too.

All three are married and live not too

far away which is good. I get to see them often and they get to be

with each other that way too.

Getting back to you guys,

I'm sorry that you need us Bob, but we're

here!!!

When the young ones post I really get upset..it's

miserable enough that older folks get sick...but kids!!!!!

That's really not fair!

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

missohio73 wrote:

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.

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[Guest guest]

Hello ,

I haven't posted in forever - and one of the reasons is I know exactly what you're talking about. I just turned 35 and was diagnosed with PF two years ago. I am very lucky so far on the lung front in that I'm in a clinical trial (the pirfenidone trial) and my FVC has gone up 20 points! But, my PF is caused by Hermansky-Pudlak Syndrome. That involves a whole batch of other medical issues that flare up from time to time. They include a bleeding disorder, a GI problem very much like Crohn's, albinism, and legal blindness.

I still work full time as a journalist. And I help run the HPS Network which is a full time job its self.

I am so, so, so tired all the time. I'm constantly robbing to pay . Now that I'm in a drug trial, I miss about a month of work a year - before I've had a single doctor appointment etc. Because I don't drive just getting to the doc. is a major time consuming pain in the ass. There's no going over your lunch break.

Because I don't drive it also means I do everything on foot, which when I'm having a bad GI day, or a bad bleed day, or a bad breathing day is exhausting. I haul home my groceries, walk to the bank, the dry cleaners etc. That takes time and energy.

My frustration is no one "gets it." Everyone's got an opinion about why I'm so tired all the time and what I should do. I used to entertain all the time, but now my house is a mess and I don't always have the energy to keep up with it. No one understands. I don't think anyone appreciates what a struggle it can be sometimes. But, I'm afraid to quit working because of insurance etc. My medical bills with good insurance are already a fourth of my income - and my parents act like I have no savings because I can't manage money. Let me tell you, I do a lot of "managing" that they've no idea about.

Okay, my little vent for the day! Grin! I hear ya!

Hermansky-Pudlak Syndrome 02/PF 06

www.heatherkirkwood.blogspot.com

>> 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. >

[Guest guest]

I wish we could all meet in person. To everyone who posted, THANK YOU I know that you truly understand how I'm feeling. I don't exactly know what I'm going to do, but change is coming..... & change isn't always bad. This support group is so comforting. It is difficult to explain my lifestyle to some family, co-workers, and friends, but you all understand because you're living a similar life. thanks....i've got to read some of the other post...I may be able to add a word or too....or most likely gain some wisdom. >> 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. >