Mom never had to force me to eat my veggies. Matter of fact, she had to (try to) force me to eat less of them. There’s nothing quite as refreshing as coming home from a stressful day of middle school and popping open a can of black-eyed peas or a fresh container of grape tomatoes, paired with a tall glass of chilled pineapple juice.
Visits to the dietician were unorthodox: “Ditch the veggies, keep the juice. It has calories. Don’t you want cake? Those vegetables are just wasting space in your tummy, space that could be filled with fattening foods.”
See, with cystic fibrosis, my pancreas doesn’t work too well so I don’t properly absorb nutrients and fat. Plus, I burned so many calories while fighting infections that I needed double the caloric requirements of a ‘normal’ person. The reality was docs weren’t trained back then to expect long-term treatment for CF. That being the nice way of saying CF is a childhood disease, which is a nice way of saying ya’ die young. So, “adult problems” like heart disease and diabetes and all that were beyond the horizon. Get the kids plump now so they can fight infections better. If sugar does the trick, it does the trick.
I was young and reverse psychology had its way with me. Desserts were chores when forced on me. I was the only kid at birthday parties who turned his nose at cake and went for the untouched veggie platter. But I eventually hit an age where the doctors started talking about feeding tubes. So, I tried to only eat veggies with butter melted on top and added in the occasional can of Ensure (fatty chemicals sprayed with cheap vanilla perfume). Not enough. In high school, I packed my pockets with Lil’ Debbies and Snickers. Almost always had a bottle of Mountain Dew in my bag, pillowed against an Uncrustable or two. I eventually ended up getting the feeding tube. But sugar enslaved me by then.
I thought I was consuming copious amounts of sugar to save my life. Turns out, I might very well have been killing myself. CF has come a long way since then. It isn’t a childhood disease anymore. Now we know that certain foods — looking at you, sugar — cause high levels of inflammation. And inflammation is just about the worst enemy CF-ravaged lungs could have.
I ended up in the hospital for 46 days straight last year. I got a big wakeup call when it came to diet: inflammation was squeezing my airways like a python and I was to begin treatment for diabetes. Most people know about Type I and Type II diabetes, but not many know there’s a third: cystic fibrosis-related diabetes (CFRD). It’s a delightful mix of the two types. Like I said before, the pancreas of a CF patient isn’t effective. When the docs took a CT scan of my pancreas, it looked like a tiny thread on the screen when it should have looked a bit like a fat, bumpy chili pepper. Your pancreas produces insulin. If you don’t produce insulin properly, ya’ get diabetes.
My hospital stay turned into a sugar detox. I figured if I avoided heavy carbs, I’d avoid the insulin needles too. And boy, was it hard. My veins pumped Mountain Dew and Gatorade. Before this time, I avoided drinking water like a cat with rabies. But I was able to slowly transition from drinks sweetened with stevia to pure water. I rejected the Lil’ Debbies and nibbled on cashews while researching healthier ways to gain weight. I was able to tweak my diet enough to only need 24-hour insulin shots instead of correctional insulin before/after eating. And I felt so much cleaner despite the other medical problems I was dealing with.
If you know me well, you know of my struggles with appetite. Between the nausea and general shifting in the stomach from antibiotics, the appetite-thieving side effects of other medications, and the onslaught of infections, eating was a hard thing to do. Like I said, I was nibbling on those cashews, not pouring them down my throat.
I’ll let you in on a shameful secret: I didn’t completely get rid of the sugar. Remember the feeding tube? Every night, I got 2,500 calories and over 100 grams of fat while sleeping in the form of these milkshake-type things, kinda like Ensure. And like Ensure and actual milkshakes, they were packed with high-fructose corn syrup (fancy talk for factory-processed sugar syrup). How else do you pack that many calories into a liter-and-a-half shake? “If sugar does the trick, it does the trick.”
Lung transplant came and with it came a boosted appetite. Steroids help me keep my immune system at bay so it doesn’t attack my new lungs. And steroids give me a heck of an appetite. I enjoy food so much now that my parents and girlfriend have to ask me to stop making growling noises while I eat. My diabetes also mysteriously disappeared, taking away the need for 24-hour insulin. I’ve weaned off the feeding tube and take everything by mouth. Despite steroids making me crave carbs, I try to stick to healthier fats that are conveniently refreshing on these sweltering 100+ degree days, things like cold avocados and coconut milk.
But my dear old friend, sugar, is smiling its sinister smile. One of my key medications causes high potassium levels. A couple months ago, my potassium got so high that the doctors feared it could give me fatal heart troubles. So, a low-level potassium diet was enacted. You know what has high potassium? Avocados and coconut milk. And potatoes, and most meats, and my feeding tube formula, and yada yada. You know what doesn’t have high potassium? A lot of those carb-y treats. I still have my 3,500-calorie diet. If I don’t hit my goal, I can lose up to two pounds in a single night. Before you say the oft-repeated joke — that you wish you had that problem — know I wouldn’t wish the malnourishment I’ve experienced on my worst enemy.
In recent days, I had some chocolate, some pie, some cake, a sip of soda. It’s just a little something here and there to keep my weight on. Now I’ve got anemia (lack of iron), which causes me to lose even more weight. So, I have to step it up a bit. Maybe a cup of soda instead of a sip, maybe a couple Nutty Buddy bars or a couple Pop-Tarts. And I find I’m not just doing it for the weight now. I’m getting shivers of pleasure down my spine as I chug that sweet, syrupy Baja Blast or munch into that delectable cheesecake.
I calculated my sugar intake yesterday and nearly had an anxiety attack. “It’s just sugar,” sure. But when I’m carrying lungs that were donated to me, that were given as a gift, I see it as being downright selfish of me to not work harder to protect my health. I don’t know the easy answer for weight gain when potassium, iron levels, and sugar intake need to be balanced. Perhaps there isn’t an easy answer. But I’m determined to not fall into my old habits again. Sugar does the trick, but I won’t let sugar trick me again.
Adamantium Joy 