How the diagnosis of IPF has made my life better......

[Guest guest]

Ok, I know this is an off-the-wall title and don't get me wrong,

given the choices I'd greatly prefer not having IPF. But the ways it

worsens our lives are so obvious. Just to me its also made some

positive changes.

1-It's given me a sense of valuing every day like never before, a

determination not to waste a moment, but to make each day, each month

as enjoyable and fulfilling as possible. It's given me a sense of

urgency to live. I know I'll do things that I would have put off

forever.

2-An even more keen awareness of what's important in life, of what

life should be about. We're so driven in our lives toward things,

good jobs, financial success, nice houses. And thats not what its

about.

3-The wisdom to simplify things, to use my energy in the best ways. I

see so many here so wise just in how they are planning their

holidays. We went to so much trouble before without nearly the

benefit to justify it.

4-Greater appreciation of what I do have as opposed to what I don't.

Oxygen isn't horrible, it's my friend. I don't live lavishly, but I

really do have a nice life. Oh, I can't go out and run five miles,

but I never could.

5-Taking care of myself. I never had flu shots before, nor avoided

those with contagious colds or flu. I've exercised more since IPF

than before. I do my breathing exercises. I do what I reasonably can

but I no longer push myself beyond my limits. I also set boundaries.

If something isn't good for me, I avoid it.

6-Ability to ask for and accept help. I was horrible at this, always

the caretaker, but never could ask anyone for help on anything.

7-This is really the one that is most meaningful. I've made the

greatest new friends, and I do mean friends, not acquaintances. Think

of how many on this board you know if you needed to talk, would

welcome a phone call and would let you express what you were feeling,

cry, express the anger, whatever. We share our innermost thoughts.

That's a very rare blessing. I now belong to a community of wonderful

people. Now I would prefer our commonality be something else, but it

is what it is. People talk so negatively sometimes about the internet

and meeting people there. Well, it depends on where and who. I know

that being able to come here is incredible. I can't imagine how alone

I would feel with this disease and not knowing another single person

in the world with it or who could understand.

8-Value those most important to you even more. Learn your true

friends as opposed to all your acquaintances. In business, I knew

tons of people.....no, I knew few people. I was around and in contact

with lots. But, now its about those i care for and who I know care

about me.

9-Find a new passion in my life. I have that for PF research,

treatment, awareness and for organ donation. I long searched for

somewhere I could find something to really rally behind. The only

thing ever before was for me abused women and children, but I wasn't

ever as personally involved.

10-Further learn the kindness of people. I know some have had

experiences of being looked at funny or unpleasant things said, but I

haven't. From the management of the apartment complex I live in to

the people who work at the convenience store down the street, to the

stranger who opens the door for me wherever it is. I've been treated

better in retail stores. Is it because of my condition and oxygen or

because of the change in me? I don't know....a bit of both I suspect.

So, does IPF really suck....absolutely. Are there moments of

depression and others of anger.....sure. Could I and should I have

learned all the things above long long long ago without it.....of

course. But things are as they are. I'm still not happy over having a

terminal disease....maybe less so now that I'm enjoying life more.

But, I have learned so much and am making more of each day. I would

have preferred a little gentler wake up call, but maybe I would have

slept right through it. I know times in my life I dreaded tomorrow

more than words can say. I knew it would be a miserable day at work

or something. Sitting here right now, typing, I look forward to

tomorrow, even as I don't want today to end. I look forward to next

week. I look forward to San in May. I have so many things I

want to do. It doesn't matter how many I am unable to get done. What

does matter is that i'm doing those I can. Oh, I'm sad when I see

those here having bad days and in pain I can't yet imagine. But, I'm

thankful for knowing them, even if it means I have to share some of

their pain in the process.