Learning To Live

I've spent a lot of today desperately trying to find where to get my H1N1 shot. In case you don't know, because I have cystic fibrosis I can not get the nasal vaccine. Mine has to be the shot - which is even more impossible to find than the nasal one. I get distracted so easily - like I think it's time for me to go turn the baby so hopefully he will go back to sleep. I am babysitting. Anyways, while I was looking for the H1N1 shot, I was also browsing the internet. Checking up on blogs I haven't read in awhile, facebook stalking people I haven't had contact with in way too long. Most of what I read was written by CF friends. People I don't know in person, but who I don't think I could live without. We talk almost daily - at least leave little notes for each other on Facebook. I love these people. They give me suggestions on how to feel better, how to get through to my doctors, how to live my life. And I like to think that my little suggestions help ...

Today was a bad day. I suppose I enjoyed knitting and watching 2 movies and many shows on my DVR (GLEE!), but today was a bad day emotionally. Every morning I wake up around 7:30 and have breakfast. Banana nut cheerios. I love them. I hate starting my morning without them. But every day for about the last week my blood sugar crashes at 11am. Crashes to the point where I'm shaking and wobbly and can't think straight. So I have an early binge lunch. Every time it happens it scares me. But I have been logical. After the first two times it happened I changed my insulin - gave myself less with my breakfast, but my blood sugar still plummeted. So I gave myself no insulin the next day. And crash again. I decided I had gone the wrong direction. I gave myself a normal amount yesterday and a little extra today. Crash and Crash. So in my head I am panicking that my diabetes is out of control and I'll never be able to fix it (see the scientific way I went about trying t...

First, a very Happy 24th Birthday (today) to my best friend since Kindergarten, Sarah Lynn. I love you! One year ago tonight I was helping another best friend push. And push and push and push. She pushed herself to the very limit, and I'll never know how she found the strength to do it. I don't think I could have. While I didn't actually witness the moment of birth of my (honorary) nephew, Luca, just being there for the whole experience was something I will always treasure. I know that my body isn't strong enough to carry a child (not to mention that my mind isn't healthy enough to be without my happy pills), so being around the strength, pain, and most importantly the love of the process of childbirth was a true gift. I wandered the halls of the hospital that night, waiting for Chris, Kyra and New Baby Luca to return from the recovery room. It was so quiet - but a happy, peaceful quiet. I've wandered many halls of hospitals late at night. I loved being ...

Tonight as I was driving home I was flipping through my iPod to find a song I wanted to listen to. Sometimes I'm really picky about my music. I have to be in the right mood to listen to certain songs, and some songs I get really tired of. But there are some songs I very rarely get tired of. And there are some sad songs that I almost never skip over. I can listen to them when I'm in any mood. Tonight I came across, "Concrete Angel" by Martina McBride and I played it. I had skipped about 30 songs before I finally settled on "Concrete Angel." I listened to it, and I finally understood why it has always been one of my 'any mood' songs. It touches me somewhere deep in my heart and I think the song has helped me through more than even I could know. The lyrics that are particularly relevent are: "The teacher wonders but she doesn't ask, It's hard to see the pain behind the mask; Bearing the burdon of a secret storm, Sometimes she wishe...

I didn't talk about yesterday here, but yesterday I was Wonder Woman. I babysat (got off early, which helped), went to the hobby store to get Halloween decorations, walked 1.5 miles on the treadmill, decorated my place, did the dishes, took out the trash, and generally was awesome. Today I am falling apart. I babysat, which went well, except for the coughing spell from the study drug I am on. I will talk more about the study drug later when I have made up my mind what I am going to do about it. That is one issue that weighs heavy on me tonight. I want to do the drug perfectly - like I did in the Cipro study, but this drug causes coughing fits. Not normal coughing fits. These are doubled over, my lung being hurled from my chest and into the next state kind of coughing fits. Then after I retrieve my lung from the next state, the coughing starts all over. And NOTHING helps. Not water. Not food. Not cough drops, nor steam nor any other thing you can think of besides the dread...