One thing I want to work on during this Year of 30 is balance. When your life’s biggest concern is staying alive, that essentially removes any other concerns from life. Sure, I wanted to get good grades and get that new CD and read all of Jane Austen, but they were secondary goals. As a character in one of my favorite movies says,”And don’t die.”
After transplant, it was almost an awakening to realize I don’t have to work quite so hard at staying alive. Sure, transplant isn’t exactly a free ride. I still have to take meds and go to doctors’ offices more than most human beings, and I can’t swim in lakes, or own a cat, or probably SCUBA dive. Or climb Everest. But there are a lot of things I can do, and which are a lot easier, one of them being travel. Since transplant, I’ve made it my goal to go somewhere every year. No more no vacations! Since transplant, I’ve been to:
- Duck, NC, in the Outer Banks (twice), where I discovered the most Perfect Bookstore Known To Man.
- Houston and Galveston, TX
- Williamsburg, VA
- New York City (I’d been there pre-transplant, too, though)
- Rochester, NY (for a wedding)
- Summit, NJ
I’ve also been in a LOT more airports: Newark, LaGuardia, Bush International. I actually sort of love flying. Even though I generally wear a mask and spread the Purell all over the plane and my hands like it’s my job, flying is a lot of fun for me.
So, I’m traveling more. I moved out of my parents’ house and now I have a townhouse. I’ve done so much more theater, post-transplant, and I love it. (Go here for more on that.)
But now the time has come for balancing all the demands that normal people have in their lives–jobs, household tasks, bill paying, exercising, seeing friends and family. The easiest way to illustrate this is with the examples of food and exercise.
Before transplant, I didn’t really like food. Sure, I liked certain things: chocolate, Rice Krispy Treats Cereal, pasta, some fruits. But food was sort of irritating. My stomach didn’t like it, I wasn’t often hungry, and eating was a battle. “Eat a litttttle bit more” was a common dinner refrain.
Post transplant: TOTAL change. LOVE food. Eat all the time! Eat food! Food is great! Good food! I LOVE FOOD!
This worked for, approximately, six months.
Then it was time for eating ilke the rest of the world. This was radical.
CF kids are malnourished. Our pancreases (is that a word?) don’t work. So we take enzymes to help our bodies digest our food, but really, food’s not our thing. We’re supposed to eat lots of calories, lots of fat. Basically,e everything that’s supposedly awful for you, we could eat. We were encouraged to eat lots of bacon, oreos, cookies, whatever we wanted, whenever we wanted it. Except I didn’t want it.
Oh, how I pine for it now! (Well, OK, minus the concentration camp escapee look. Not good.)
Some of the changes were immediate. I didn’t like the taste of regular soda anymore. I drank 2% or 1% milk (I LOVE a fat-free milk from a local dairy in Athens, OH. It’s the best milk I’ve ever had in my life.). But I was ALWAYS hungry. Part of this was steroids. Part of it was food just tasted darn good!
It’s only taken almost seven years, but now my stomach is starting to find equilibrium, and so is my mind. Just because I can eat doesn’t mean I should eat. Last night, I had a Chipotle burrito bol before rehearsal. I try to eat things like this before a show or rehearsal so I’m not starving halfway through. I had it sans meat, with just sour cream, cheese, rice, veggies, and mild salsa, so it wasn’t bad, on the food scale of things. But I goofed and also got chips and guacamole. Normally, I”d be all over that. This time? I had about four before my stomach went, “Um, excuse me, we no like this.” So much for my plan to take them to rehearsal with me. They met their end in the trash bin. I did eat most of the bol, but it felt a bit…unsettled. Like I’d eaten too much, or too fast.
That doesn’t mean that I still don’t have crazy moments of food gluttony, but they are much fewer and far between than they used to be. Candy bars? Almost never eat them. (There are times when the blood sugar demands them, and they are the only options, as opposed to peanut butter and crackers.) Ice cream hardly ever happens, unless it’s a rare treat. I know if I keep it in the house, I’ll eat it all in one sitting. I can eat chips and salsa and some cookies with moderation (as in, the suggested portion size). I still love cheese–especially good cheese–and that’s helping my bones. I’ve actually gained some bone density since transplant, which is, apparently, really rare. I’ve always loved dairy products. Milk, cheese, yogurt–bring it. So I’m working on my stomach.
I’m also working on working out. Before transplant, I weight 85 pounds. This is a problem. Of course, it wasn’t due to too much working out. At that point we were just trying to keep weight on my body. It was hard. (trust me. VERY difficult.) Now, I have to exercise like everyone else. Bawhwhha?!
For awhile, my body was very uncooperative, probably because of the statins I was on to help lower my cholesterol. The immunosuppression regiment has a side effect of messing with blood sugar, and also messing with cholesterol. But statins are not really body-friendly. They make my bones hurt, they make my joints hurt, they make me dead-tired, and, oh, they ALSO mess with blood sugar! So, finally, I asked my docs to take me off it. And wooo–no more body pain! Energy! Sleeping better! Blood sugar is happier! Whee!
I did a pulmonary rehab program at my hospital during March. Basically it’s cardio exercise, with monitoring and PTs running the show, making sure that all is well with the body. It’s teaching you how to exercise safely and correctly. I’ve done this a few times, but this is the first time it’s really stuck. I want my body to be awesome. After years of “oh we can’t do stairs” (before transplant, a friend of mine actually had to carry up the steps of the Empire State Building. Long story, but thankfully I weighed about 89 lbs at that point). Just brushing my teeth was the equivalent of running a marathon for me.
So now I’m trying to hit the treadmill at least 3 times a week. With the intense last week of rehearsal happening right now, that’s not really happening, but the show itself involves a fair amount of movement. Plus, some of us do yoga on the stage pre-rehearsal. 🙂 (always fun.) My body gets cranky if I don’t make it work. And I love seeing the scale drop and noticing that shorts I just bought are already a bit too big. I want my body to work well.
Some people talk about “work-life” balance. I’ve never been one of those workaholic people. I like my job, but life is for living. Get out of the cubicle and live, dang it! But now it’s a “too much of a good thing” balance–more like “everything in moderation.”
It’s taken awhile to get here, mentally, but now that I’m here, I want to make my life balanced. I want to stick around for awhile. Working on food and exercise is going to help there.
However, that still means room for treats….