Learning To Live

My life has been crazy lately. And I still haven't blogged about the magical drug, and I'm planning on it, but I need a block of time first. And this weekend I'm going to a wedding, and all but a couple of my best people will be in town. Today I took a big leap in my life. I found a salon on my own and had the courage to get highlights AND a trendy haircut. Here is me with foils in my hair! And my new hair! You can't see the highlights very well because of the lighting. But look at how Trendy my hair is. I have had the same hair since middle school. -- Post From My iPhone

I may not always know exactly who I am but I know who I am not. I am not The Girl With CF. Your Friend With CF. That Person With Cystic Fibrosis. Describe me any other way you want, but don't point me out as the one with CF. Because I am so much more. Call me any of those other qualities. Call me smart, brilliant, radiant, depressing. Call me pretty, ugly, sweet, or even bitchy. Nerdy, out-going, social, bubbly. Honest, not honest, creative, aggressive. Dependable, irresponsible, punctual, flighty will do. Tell them I love children. I love music and dance. I quilt, sew, scrapbook and knit. I'm a film buff. And I even love the bad ones. Tell them I'm stylish, addicted to purses, and I love me lots of shoes. I have red hair, or brown hair, or hair that gets cut once a year. I have green eyes. And I always wear glasses because I'm too irresponsible to wear contacts. I'm organized but not neat. Clean but not exactly immaculate. I'm chunky, not-quite thin, not at...

This is the quilt I've been devoting my time to. This is the front side. I'm currently pinning on the T-shirt squares and then will hand sew them on. And then I need to make the back, sew on those T-shirt squares, make a border, get some batting, and sew it all together. Then I need to decide how I want to quilt it. By hand, with clear thread I'm thinking. I just need to decide on a pattern. Special shout out to Callie, Rachel, Janelle and the others who made me the banner when I was in the hospital. Shout out to whoever gave me the idea to make a T-shirt quilt (I think it was Sarah). And shout out to Christy's T-shirt quilt for showing me that a T-shirt quilt could be pretty. And I just want to say how happy I am to be doing all this work on this quilt. The t-shirts have been in my closet for years waiting for me to make a nice looking quilt. And I'm so happy with how it's turning out!!! Yay quilting!!! -- Post From My iPhone

Eva, also known as "65_RedRoses," is dying. I read her blog. I follow what is happening with the documentary they made about her lung transplant (and I can't wait until I can see it. When will it be released to the States?!?!). Part of me wants to BE Eva. I want to be successful at spreading awareness about Cystic Fibrosis. I want to be gorgeous even when I'm sick. I want to have the words to express how I feel. I write in my personal journal every night, but I feel like my blog should be much more. Updates on how I'm doing. Feelings about life. Wisdom. Hope. Love. I want to live my life with grace and love like Eva has. I want to be as much fun as Eva, but lots of times, I am grumpy. And I'm sarcastic. I think my sarcasm often comes off as negativity, but I don't mean it that way. In my brain, my thoughts about my life and my disease(s) are hopeful. Tonight, I would like to quote some of my favorite things that Eva has written on her blog...

The pain I'm experiencing is familiar. I've felt it before. Pelvic pain and lower back pain. It's not as bad as it was then, but it's the same. And it's the same in the way that I am starting to not be able to stand for very long. Back when I first had this pain we never truly discovered what was causing it. I was treated with a drug that put me into menopause, and the pain (and constant 'down there' bleeding) went away. So, let's make this really long story a shorter one. The magical drug only had a few side affects like lactation, hot sweats, and Brillo Pad facial hair. After adding another med to help my bones, the hot flashes went away. But I've been able to enjoy the Brillo Pad facial hair and the lactation for the last year and 1/2. Have you ever been able to squirt milk across the room with your nipples? I didn't think so. I often felt like the FemBots in Austin Powers. If only it were something deadlier than milk... But I real...