This short article says it best. It conveys well the difficulty I have, and once again validates the quicksand I sludge through every day. It says so well what I don't say well.

My life could turn on a dime and my health not worth two cents within a blink of an eye. This is why I can be fragile at times. This is why I live as happy and positive as possible... though I know time might run out any day.

This is why this grandmother drove 21 hours to attend a special day with her grandson at his school. This is why I leave for Atlanta today for a joyous field trip with friends. IPF could take me within a few weeks, months.

Cynics might say, "Oh shut up! We all could die today. Look what happened in Boston this week." And of course they're right and that's why I fight the innate tendency to fret about my diagnosis. This is why I try not to whine. But then I read an article like Melissa's and I'm comforted and validated. It's okay if I whine every so often.

There is no treatment or a cure for IPF. The only medicine I have is hope and faith, and I am so very, very certain no one understands, but I understand why they don't understand. My tiara slips every so often but most the time I look healthy and act healthy and most importantly, am upbeat. I've been around IPF patients who sit around and moan and groan all the time. From the moment of my diagnosis, I knew I didn't want to be that kind of person.

Like all other IPF patients I know or have read about, I seem to uniquely be doing this alone. I do this with as much grace as I can muster. Much of my sense of isolation has nothing to do with the physicality of aloneness - though I do become exhausted easily. I feel isolated because most people have never heard of IPF. It has no fancy ribbons or relays racing for a cure. Few are fighting for us. We stand on the front line alone. We look healthy. We don't lose our hair or have skin the color of ash. Our odds of survival are zero.

This article says it best. So I'm handing its truths to you so you can truly understand *some* of my struggle.

And when you do see me out and about, and I'm happy and laughing and carrying on... it's all real, because I am happy to have this day and this time to be with you. I'm not a good actress, so what you get is the real deal and that includes the good, the bad, and the ugly. *laughing*

Yikes! I'd better get organized because my friends are picking me up soon for our drive to Atlanta. We're going to the High Museum of Art for the Frida & Diego show. I'm SO jazzed about this!

Yikes! So you now read the article linked below.

Much love to you all. And family and friends who read this, please don't fret. Everything is going to be fine, just fine. As always, thanks for listening.


Melissa