Today is a HUGE day for me. I'm about to be wheeled in the Operating Room for the 13th time in 3 years. This will be the first time I've been sedated since they discovered that I have a heart problem. It's kind of scary, but I know that they're going to be watching me very carefully before and after the procedure. I'm having a set of scopes, a little camera that is inserted into various holes in your body, and biopsies at the same time. In Inflammatory Bowel Disease, sometimes the only way to tell what's going on with the insides is to go in and have a look. They are going to see whether the Stelara is being effective at calming down the inflammation and allowing for healing to happen. I want the Stelara to be working so bad. But then if the Stelara is working, then that leaves a lot of unanswered questions about why I'm feeling the way I am. Why I'm having bleeding episodes, why I can't eat solid food (I have an NG Feeding tube), why I'm having pain. It's hard to explain the feeling of being stuck between wanting both sides, which seems pretty near impossible.
Do you have a pre-"big day" routine? Something that you do before you have to go do something really big? My big day routine usually starts with my mom and I having "silly time" and taking some silly pictures together. We come up with some pretty corny health related jokes, I'll spare you from hearing them. We try to keep the mood light, listen to some of our favorite bands, launch into debates about unanswerable questions (What was before the singularity that caused the Big Bang? What if we could download our every thought?). We're even cracking jokes right up until the big moment.
Why do we have pretty much a silly day? Because it's part of our plan to fight this disease. I have to be able to laugh sometimes about the craziness that has made up the last 3 years. There's a saying "If I didn't laugh, I'd cry", well that's the case here. Sometimes it does feel like nothing is going right. I've had nights where I've woke up crying in pain from my joints and bones, then in the morning have episodes of spontaneous ejections of pre-digested something out of my mouth, have my ostomy bag fall off and not be able to stick on again due to a sudden reaction and all before 9am. The only thing you can do in situations like that is to laugh, because otherwise, you'd never stop with the tears. There is power in laughter. I know that when we start cracking jokes, all the problems seem a bit less extreme. It changes my day around. We all need a smile and a laugh sometimes.
So as I'm being wheeled into the OR, I'm going to be thinking of my Jacob's Healing Rooms project and how much laughter it is going to bring to other sick children. Because that thought will definitely be one to encourage some great dreams while I'm sedated and make me fall asleep with a smile.
"This is my fight song/Take back my life song/Prove I'm alright song/My power's turned on/Starting right now I'll be strong/I'll play my fight song/And I don't really care if nobody else believes/'Cause I've still got a lot of fight left in me"
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