I'm new.......and quite scared!

[Guest guest]

I am a 59 year old woman who was diagnosed with IPF in Sep 09 - like 7 weeks

ago. I must admit I think I cried for 6 weeks...... I am coming to terms with

my diagnosis and trying to get " my house in order " . Will, trust, advance

directive etc. I'm in the very beginning of the disease - I don't use O2

everyday. I really only need it when I talk a lot, walk far, climb my back

steps (5), etc. My O2 is only at 2L so I'm lucky - for now. I have

intermittent chest pain and cough. The biggest change in my life has been the

8-10 hours of sleep I now need. For years I worked and commuted 50-60 hours a

week and survived on 5-7 hours sleep a night!

I do have to admit that reading the email strings from the last 2 days has me

absolutely terrified. The future of the disease is so dismal...and my family

will carry the burden of caring for me. It scares the living hell out of me.

I'm not married, my boyfriend of 4 years lives with me. He is much younger and

I keep thinking how young he is to have to care for me. My son is 32 and lives

close by, but is also on disability. My sister also lives close, but still has

3 kids at home and she works. My doctor put me on disability immediately due to

my extreme fatigue and I do feel better now that I'm not forced to drag myself

to work.

With this all said....I guess I'm just scared, overwhelmed....and very worried

about the future.

Myrlene Brown

La Verne, CA