Learning To Live

I'm deciding what I want in life.  I am figuring out what is most important in life.  I am figuring out how to maintain my current good health and trying to decide what to do with it - with all the extra energy and time.  I know, this could be a big, important post.  Or it could be a short little one with some goals.  I'm leaning towards the 2nd option because I need a nap, but I've got some very important, mind-blowing ideas rattling in my head and I want to get them out there.  I want to keep babysitting.  I want to be a better dancer. I want to enjoy my life and have plenty of time for family and friends. I want to have time for my mindless TV and crafts. I want to be out there speaking about cystic fibrosis.  I want to speak at CF Foundation events.  It's that last goal I want to talk about today.  I am different.  I'm different from many CF patients.  I am compliant to a point - if it's not working for me, I won'...

Sorry for the lack of posting lately. I'm on a spiritual journey and it's taking me many places. My journey started in Italy - a place I have actually been. Then it took me to India and Bali. (that was in "Eat, Pray, Love"). In that book I discovered that I have a soul that I need to look after and I need to actively take care of it or it will wither. And the same goes for my happiness. If I don't actively pursue happiness, it will never find me on its own. I learned many sage lessons from that book. Next, I went into a world where Medicine and The Law crash into each other. "My Sisters Keeper" was a wonderful story. I related in many ways because of the medical procedures being done, but I couldn't relate at all to being used to save my sibling. I wonder if that's how my brother ever feels. He wasn't conceived to save me, but it was partially (or mostly, depending on who you ask), because I was sick. My mother wanted a healthy ba...

This is what swinging must feel like, but without all that icky STD crap. So many partners, so little time. We don't discriminate, as long as you're willing to jump on the dance floor, aw, shit. Now my metaphor is ruined. Well, I warned you. I stayed up until the very last few minutes of UWMBDA tonight. Google it, it'll be there. I'm a ballroom nut. Last semester didn't go so well with the endometriosis killing my party. I happily sat at the table and watched everyone else dance, convinced I would never join in again. But tonight, my friends, I danced and danced and danced. And once again, my feet gave out before my lungs. I gave hugs to so many people - almost all of my favorite people in the world were there - and none of the ones I hate! It was a FABULOUS kick off dance - especially if turn out stays high. I don't know where we'll be dancing - maybe in the streets, but we'll be dancing. But the asphalt is icky for out precious dance shoes...

I found the following HERE . It's the website of a guy who just got a lung transplant and is a patient of the doctor I am looking to switch to/get to know/meet. "As we grow we learn that the one person that wasn't suppose to ever let us down, probably will. You will have your heart broken more than once and its harder everytime. You'll break hearts too, so remember how it felt when yours was broken. You'll fight with your best friend...and maybe even fall in love with them. You'll blame a new love for the things an old one did. You'll cry because the time is passing too fast and you'll eventually loose what you once had. So take too many pictures...laugh til it hurts... and love like you've never been hurt. Because every minute you spend mad or upset is 60 seconds of happiness that you will never get back." I believe everything he said, even though I don't always practice it. Sometimes it's really hard to follow what you preach, but I...

Dear World, This will be my last post until I get my act together and write in my regular paper journal. That is much more cathartic for me because I don't think, I just write.... I am not going to allow myself to blog until I have a good topic in my journal journal. I have made other rules for myself, mainly to help me get back to a good place where I know who I am. I am reading a book by a woman with CF who has had 2 double lung transplants. She is so wise, and I know she's more than 10 years older than I am currently - but her wisdom is what I crave. I know writing in my personal unpublished journals will help me get there. (by the way, her name is Tiffany Christensen and her website is www.sickgirlspeaks.com ) I think I have figured out why I have stopped writing in my personal journal recently: I am afraid of what my mother will find when I am gone. I have never hidden my journals - and I'm surprised she hasn't read them before. But I don't want to self...

Great Strides 2008 - aka a day that made me smile. Bucky Took this one: Idk who took this, but look, I'm happy. Really happy because there is a small child in my arms: Happy because these are my people: And this is Tracy - the best CFF director ever! There. I'm happy. You satisfied?