Tuesday, June 26, 2012

How theatre helped me more than you can know!

Theatre and the balance of my life

Every person with Cystic Fibrosis has to figure out to balance the medical with the social. For years I had no clue. Currently, I'm in a show Hairspray, its really fun and a show I've always wanted to do. I'm being smart, no matter the time I get home I still do my meds, I still find time to do my jogging/exercise everyday and I eat extra/do extra stomach feeding to make up for calories burned. I've been sharing about my CF with cast members, when I need to and even the director knows. I watch my energy/blood sugar. AND even while doing the show I'm at my highest weight in 10 years and on Thurs at clinic (CF appt) I will find out if my lung function has gone up (hoping for 60%). So no worries..

 I learned from my mistakes though. In the past I was stupid. When I was cast in  Urinetown, at the University of Illinois, I kept pushing too much at rehearsal and then even went out with cast members some nights afterwards. I would skip my night medications/treatments and my stomach feeding and start the next day minus 2,000 calories... repeat, repeat. I did this with other extra circulars too, like the student organizations I did. I got soooo sick, I eventually had to call my doctor (and no surprise) and go on IV antibiotics. I put the pump in a purse and kept going to rehearsals. (no biggie, I have performed with an IV in.)

    This one guy in the cast asked if I was okay (apparently I looked tired) and he could tell I was lying when I said "I'm fine". He noticed a lot more than the others and I ended of telling him what I had been doing. He told me how ridiculous it was, "why didn't I go home and do them". I explained on nights where I had energy I wanted to go out  and get to know the cast and feel included. On nights where I went right home to do meds, I'd crash before getting to them. This friend, named Danny, told me he was going to walk me home and hang out with me, so I wouldn't have to miss out and I could do my treatments in front of him...

WHA (whips head around)? Actually, with people around...Um, I wasn't sure, but he was. So at first I felt awkward doing my nebulizer treatments with him there. We played some N-64 and watched futurama. He was cool with it and I was comfortable. I kept doing them and I even came out and told the whole cast about my Cystic Fibrosis and my IV meds, etc.

I don't know if Danny Z realizes what he did for me. I'm not sure if I ever told him. That was the start to me sharing my medical problems with strangers/others AND he made me realize I can do my meds around people.

BABY STEPS, yes, most friends I have known since high school and roommates I am okay with it, especially family. Newer friends its not as easy for me and I've always avoided it around past boyfriends (One reason I realized relationships weren't working, but that's for another night...lol)

But thanks to Danny's understanding, persistance, and caring, I know I am at the point where I can shout it out and not even care!

SO THANK YOU to DANNY and all the future cast members (Alex S.) I have told and been cast with since then! You make my life sooo much easier by knowing! And thanks to them caring, I'm even right now, at this moment, doing my night medications/ getting my stomach feeding ready after a late rehearsal. No more skipping for this girl! :-)

ADVICE CFERS: Don't make the mistakes I made. The mistakes I made cost me 30% of my lung function over the years (went down to 39%) and I'm working on getting it back clinic by clinic (up to 57%). Don't care what others think while doing them and if a friend/BF/anyone tells you to skip, they aren't your friend. Stick up for yourself and your health!


  1. That is awesome to have a friend like that... absolutely awesome! I think I did know about your illness back in the day at IVCC, but I don't think I realized how serious it was or that the actual diagnosis was CF. Needless to say, I'm always happy to see you prosper. I love reading your blogs... I find I relate a lot to them. Keep up the good work!!

    1. Yeah, most people in Princeton and around Pton know I have CF, but only the ones I went to school with know what it has put me through.. When we were in SchoolHouseRock I wasn't open about it... I enjoy your blog too! AND you are amazing too, you have just as much drive as me (just for different obstacles)! :-) Keep blogging!