Living and thriving not just surviving

[Guest guest]

Bruce,

Thank you so very much for those kind words. I appreciate them more than you know. It's amazing how the love and support that I get on this board makes such a HUGE difference in my life and my ability to carry on in spite of this ugly ugly disease.

Thinking back to when I was newly diagnosed and just out of the hospital.... I was flat out terrified, 46 years old, my son was just 20 and struggling mightily with many issues. The idea that I might not live to see him happy and moving in the right direction devastated me. I didn't know what to do or where to turn. The internet was a source of information but it was confusing and depressing. And then I found this group. It's not overstating it to say this group changed my life. I found Leanne, Peggy, Joyce, Sher, P, Phred, Grey and our beloved Ginger and many others who continued to LIVE with this disease. People who weren't waiting to die but continuing to live, enjoying their families, friends and pets, going on trips, having lunch, going to church etc etc. I knew that's what I wanted. Since then so many new people have joined the board, I've made two trips to meet folks in person (best trips of my life) and yes, I'm LIVING

with PF not merely surviving.

I don't think anyone here realizes the extent to which we all affect one another. And just as important how we affect the hundreds of people who read this board but choose not to post. The inspiration,support, ideas, wisdom, humor and plain old practical horse sense is invaluable to all of us. Thanks to everyone, you are all a gift in my life and infinitely precious to me!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Sher

Beth

Well, you are a great example of living. You made major changes and compromises based on your condition. Surely it wasn't what you invisioned but you seem to be adjusting so well and getting use to North Carolina and you've found the best medical care. You went to spend time with Peggy and Leanne. You've become even more involved here. I understand you've got a disease and your condition, but I see a woman so alive and vibrant when I see you here.

Terry mentioned embracing the disease. Well, that may be going a bit too far in that all of us hate it. But, we do embrace it because we have no other good choice. All the other choices we have are so much worse.

I've mentioned before my uncle who was diagnosed 30 years ago with COPD and proceeded to spend the last 30 years in his recliner except when in bed, only leaving the house once or twice at most per year for funerals. He has now gone to the hospital with breathing problems but was only on 2 liters of oxygen at home. Another uncle emailed me "Louis has suffered for a number of years with this terrible lung problem". From what I have been told he isn't considered likely to make it out of the hospital although I don't know details. I know he's had some suffering and don't mean to not sound compassionate. In fact, I'm quite compassionate toward him because he wasn't fortunate enough to be in a community like ours where we learn how to live. Not knowing, he let his diagnosis become a death sentence and just waited. It's sad when I think of the fact that my disease

is medically considered more serious, I'm on more oxygen, and I likely have far fewer years, yet I've gotten out of the house more times this year already than he has in 30 years and he was far more social and out and about type than me. They are all so shocked that I'm going to be traveling there soon after watching him. I wonder where he would have liked traveling but never realized he could. He never spent a night away from home and only portable he had was an E tank on cart.

> > > > > > > >> > > > > > > > Sher,> > > > > > > > I'm happy to hear the doctors have switched your> diagnosis. NSIP> > > > > > > is definitely preferable to IPF, the life expectancy is

much> longer> > > > > > > and as a bonus, it does not always progress. As a matter of> fact,> > > > > > > Dr. on at Duke just told me last month that he's seen> patients> > > > > > > with NSIP who have been "stable for decades." I mean I know> that my> > > > > > > experience may be different but anything that gives us hope> is> > > > > > > helpful!> > > > > > > > Have they switched your dx based on the behavior of the> disease or> > > > > > > also on the ct scan results? NSIP is usually very> identifiable by CT> > > > > > > scan. To identify the type of NSIP (fibrotic, cellular or> mixed) you> > > > > > > would need a biopsy. But at this point it probably

doesn't> matter as> > > > > > > long as your stable. I understand why you wouldn't put> yourself> > > > > > > through that. I don't regret my biopsy but I totally get why> you've> > > > > > > chosen not to go down that road.> > > > > > > > In the meantime, celebrate stability!! Stable is my happy> word!!> > > > > > > > Beth> > > > > > > > Age 48 Fibrotic NSIP 06/06> > > > > > > >> > > > > > > > Change everything. Love and Forgive> > > > > > > >> > > > > > >> > > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > >

>> > > > > Caro> > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP> 01/08, RHEUMATOID ARTHRITIS 03/08> > > > > Mississippi> > > > > ____________ _________ _________ _________ _________ __> > > > >