Archive for December, 2007

I want candy…

December 24, 2007

I’ve never been a fan of cake, cookies, or pies. But, candy, now that’s a different story…I’m not a sophisticated candy lover. No need to waste Godiva, Toblerone, fudge, bonbons, tins of gourmet hard candies on me. My taste buds fall more along the lines pixie sticks, sweet tarts, and really anything carrying the Willy Wonka moniker. Perhaps my love of candy started with the hard ribbon candy that my parents used to use to bribe me to take my digestive enzymes. Or the quarter my mother used to give me at the grocery store to buy whatever I wanted, which was almost always a Sugar Babies, Fun Dip or a box of Tart N Tiny. And, my preference for what I call, “little kid candy” (but think of as sweet treats that feed my inner child) has followed me into adulthood. Among my favorites are chewy spree and Haribo Gummy Bears, despite the chuckles from friends. But I’m used to this. When I was doing fieldwork in Australia, it was the source of ribbing among Koori children whose parents always jokingly reminded them that they would have to share their bag of lollies with Auntie Katherine.

So, why all this chatter about candy? The irony. In February I was diagnosed with CF Related Diabetes (CFRD). This type of diabetes is relatively common among adults with CF (and, in case you’re wondering, has nothing to do with my candy consumption). Our pancreas does not create the enzymes to break down fatty foods, so we have to take supplementary enzymes to aid in our digestion and absorption of food. It seems that one of the adult extensions of this is that the pancreas stops producing insulin.

Initially, I was really irritated and a little depressed about this new diagnosis. I kept thinking, “Don’t I have enough treatments and medicines to worry about already? I don’t need anything else to worry about.” The doctor instructed me to start checking my blood sugar regularly put me on a long acting and a short acting insulin. This regimen seems to be working pretty well.

So here I am. After a number of years as a hypoglycemic, I am learning how to deal with the low blood sugar that is a side effect of taking insulin. I’m also figuring out how to balance my need for a high calorie diet (approximately 3200 calories a day) and controlling my blood sugar. For those who have any experience with diabetes, you know that this balance presents an unusual and interesting problem. I have been used to eating pretty much anything I wanted. Like most people with CF, I am skinny but not too thin and I will probably never be over weight. When I’m not having a flare, my weight is about average for my height. Several years ago I lost 12 pounds during a bout with pneumonia. The doctor’s advice was eat fudge or hamburgers and fries – anything that was high in calories. It took me 18 months to gain back that weight. I did it with scandishakes, milky way bars, and a nightly bowl of vanilla ice cream. Obviously, I wasn’t thinking about sugar or carbohydrate intake. Now, I do factor that in, but it doesn’t mean I’ve given it up completely. At first, I tried giving up carbohydrates. That lasted about a month and I felt hungry all the time. I lost 5 pounds right away. I began to pay attention to how what I was eating was effecting my blood sugar, which meant checking my blood sugar frequently (too frequently, maybe). I have done some reading, talked to others with diabetes, consulted with my doctor and a nutritionist, and adjusted my approach since then. I have come to terms with the fact that , “Yes, I do have one more thing to keep track of.” And, I’ve also realized that it’s going to be ok.

Part of my motivation for writing this entry is that a very close and life long friend of mine, Debbie Busler, is running in the Flora London Marathon in April and is raising money for Diabetes UK (Debbie is currently living in London). She is dedicating the race to Pat, her husband (for lack of a better category) and me. Now for the plug – if you’d like to sponsor Debbie and follow her progress as she trains and prepares for the marathon go to http://www.justgiving.com/debbiebusler.

Despite accepting my diagnosis, treating my diabetes isn’t always easy. One of the most difficult things has been figuring out which rules about diabetes don’t apply to me and how to calculate the amount of insulin I need. I am trying my own version of carb-counting, making smart choices about the carbs I eat, but also countering the effects of eating sugars and carbs with insulin. I have a busy and sometimes uneven schedule, effecting when I eat and forcing me to pay very close attention to my blood sugar. My biggest fear is that I pass out in front of my class while I am in the middle of a lecture on the Yolmo of Nepal or the definition of community for Haitian immigrants in Brooklyn. I do what I can to ensure that this won’t happen – eat before class; carry glucose tablets with me everywhere; and keep a glucogen kit handy. Just in case, though, I wear a medical alert bracelet and trust that an observant student or colleague will see it and figure out what is happening.

Everyday is an adventure….I feel like diabetes has put me in the middle of a great, living science experiment. A constant cycle of trial, error, and correct. I suppose that is really what life is about. It is certainly reminds me that I never have as much control as I’d like to have or as I think I have. Rest assured, this won’t be the last you read about CFRD on this blog. The more I learn, the more I’ll share. In the mean time, I want candy.

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Be Here Now

December 16, 2007

I had a CF check up last week. The recent weather and allergies have left me with horrible sinus troubles, which in turn mean crackly, gunky lungs. I haven’t been feeling all that sick, so it was a little disconcerting to learn that my lung function was down from my previous visit. I was thinking about this today when it occurred to me that I don’t know what a person with 45% lung capacity is supposed to be able to do or not do. I thought about researching it, but then thought better. I could worry about this, but I won’t. I decided that I’d just keep doing what I was doing, which at the time was vacuuming the house.

“Be here now.” It’s an useful yoga mantra, as I breath (or wheeze) in and out through downward facing dogs and cobra poses. “Be here now,” which in an alternative translation could be “keep doing what I’m doing” is also a life philosophy that I aspire to.

Mortality can hit you like Road Runner dropping an anvil on Wiley Coyote’s head. For someone living with a chronic illness however, I’m not sure that the bar between life and death are ever fully out of sight. I like to think about my sense of mortality, which sometimes sits like a monkey on my back, as a blessing. The existential questions, and any insight I might have into them, provide an undercurrent in how I go about my life. But, when I breathe and repeat, “Be here now,” it’s not about cherishing every moment or doing all the things I’ve been putting off in the rush to the finish line. It’s actually about letting go of all of that.

Other people’s ideas about the limitations created by disease can be very powerful, particularly if they are come from “experts.” Too often when someone is diagnosed with a serious illness, they let other people’s expectations define and limit how they respond to the illness. I’m lucky that my pediatric CF doctor and my parents, without sugar coating the situation, never cited CF as a reason I shouldn’t or couldn’t pursue something. Thankfully, they didn’t think about CF that way. They were proponents of my taking ownership of and responsibility for my condition (and, that’s what the doctor called it – “a condition,” not a disease), figuring out for myself my limitations and setting my own boundaries.

As I have gotten older, my boundaries – the edges of what is good for me or what I can physically do – have become more defined. All the same, I get up in the morning, do the breathing treatments and whatnot that make the day’s activities possible; and then go about my business (these days my business is teaching cultural anthropology at a local university). This isn’t always an easy task; I don’t mean to make it sound like it is. But, I am resistant to putting too much time into worrying about the potential restrictions. Worrying about what I should or shouldn’t be able to do as someone with severely compromised lung capacity. I’m more interested in seeing what I can do today – who I can learn something from; who I can teach something to; where can I go; what I can ask my body to do and how it will respond. It’s a lot like putting one foot in front of the other or taking one day at a time. It’s a willingness to walk into the unknown, without forgetting what has already been established. It’s a desire to declare life, to be here now.