Eating was a struggle for me, especially when I was a little girl. Thanks (or no thanks) to Cystic Fibrosis, my pancreas has been almost completely useless since birth, and the only thing it's been able to produce for the past 17 years have been small amounts of insulin, but even that has decreased with age, and there's never been much I could really do about it. With diet, I could slow the progression, but I could never stop it.
Back when I was ten years old and younger, the CF doctors really had no idea what to do with me. They tried to explain to me and my parents that getting sick after every meal was just normal with CF, and the best way to deal with it was to accept it. Because CF is so rare, they were only beginning to understand it. Through me, they were learning, and still are over ten years later.
They had me on a pill that increased my appetite, as well as a pill that decreases nausea, and on the highest enzyme dose possible (enzymes are the pills I take to digest my food), which back then, because enzymes were so new, I took 7 pills with every meal (these days I take 5). If all else failed, which it often did, doctors told me to just chug down a glass of laxatives and wait the pain out. It didn't help much.
My meals were insane even then. At school, I was expected to eat twice as much as everyone else, and my doctors told the school staff that I couldn't go outside for recess until I finished all of my food. I became a master as shoving all of my food down my throat just so I could go outside at the same time as everyone else, and the kids started to circle around me just to egg me on and watch as I inhaled two full lunches in under 15 minutes. The staff stopped having to cheer me on so much because the students took that role. At the time, no one really cared to ask me why I ate so much or why I often excused myself to the bathroom for such a long time, and I was totally ok with that.
At home, I'd eat entire bags of pizza rolls in one sitting and drink at least a gallon of milk everyday. Sometimes, when I refused to eat, my parents would use reverse psychology on me, and then wave a $5 bill in my face to get me to eat, which I'd do and I'd feel very proud. But about an hour later, I'd get sick, and all of those feelings of pride and joy would go away.
When I was around seven years old, my mom was pregnant with my little brother, and my little brother's dad, Clarke, wanted to raise his two Canadian kids in the States for a year or two, so we moved into a big house together. Clarke became best friends with our next door neighbor, Doug. Doug was a hunter, despite his severe disability. Doug was paralyzed completely from the waist down and partially from the neck down due to a motorcycle accident, so while he enjoyed hunting using special programs and modifications to hunt, he couldn't cook all of the game himself, and his helpers weren't exactly fans of the game
Clarke told Doug about me. Clarke theorized that if I lived off of wild game, then I wouldn't struggle with being so sick. Wild game is lean but still very rich in calories, and if I could eat a couple steaks rather than a whole bag of pizza rolls, I may be able to avoid illness if I could avoid the fat. Doug agreed, and told Clarke he'd give me game for free if I ate it, and sent Clarke home with two elk steaks.
To everyone's surprise, not only did I inhale an entire steak and ask for more, but I didn't get sick from that. Doug was happy that his freezer was finally emptying since, and we were all happy to see me so well without losing weight. But after a few months, we'd run out of game, and I'd have to go back to eating pizza rolls and mac-n-cheese until hunting season rolled around again.
When my mom and Clarke separated, we moved houses and I started middle school. It was there I began to really get bullied. I stopped eating so much so I wouldn't spend so much time in the bathroom, but of course that meant I lost a lot of weight. Kids noticed how small I was and picked on me for that, as well as a bunch of other things relating to my health. The name-calling and the rumors weren't what hurt the most. Being pushed into lockers and having doors slammed on my face were what really hurt, literally. When I finally switched schools after almost two years of hell, I decided if I was going to increase my self-esteem, I had to work for it, so I went into Tae Kwon Do.
TKD was one of the best things to happen to me even though I saw it as a chore and rarely enjoyed it. TKD increased my appetite and made me stronger, and my masters didn't treat me differently from anyone else. I was still expected to work just as hard as everyone else, and even if I hacked something up, my masters saw this as progress and told me to work harder so I'd hack up more. It was hard work, but I eventually got taken off the appetite pill because I didn't need it anymore. Pretty much all of my fat was turned into muscle, and my visible bones began to disappear.
Around this same time, my pancreas started dying on me, so my mom asked her best friend for help. Her best friend is a Harvard educated vegan dietician, and she really wanted to help keep me off insulin if possible. She told my mom to put me on a strict organic paleo diet, but to keep milk in my diet just to see how things went. My blood sugar levels went from being dangerously high to dangerously low in just a couple days, so we tweaked my diet, and sat back to watch what would happen.
Within a few months, I had gained weight, stayed off of antibiotics, and my pancreas was healing a little bit. I was eating around 4 meals per day of mostly greens and meats, but I still drank a gallon of milk everyday. Our grocery bill skyrocketted, but my parents didn't care because they didn't have to take so much time off to take me to doctors appointments.
Within a year, I had completely turned around. I was a beast, only bested by my basketball and hockey-playing friends. I was eating five meals a day. I'd wake up super early so I could eat a large breakfast, make a smoothie for the road, and pack a bunch of snacks for school (my doctors gave me permission to eat in class). At school I'd get two turkey sandwiches, eat at least a tray of salad from the salad bar, and drink a few cartons of milk. I'd come home and eat whatever I could before TKD (which I had three times a week), and then eat again right after TKD, and then eat again just before bed.
My weight, height, and health all greatly improved. My growth chart looked like a hockey stick between late 7th grade through 9th grade, and I didn't slow down until 10th grade, and some say I'm still growing. I was getting a new belt in TKD every 3-4 months because I was there so often and doing so well, and I found myself in sparring. I'd spar with the black belts because I was too aggressive for the kids with my belt. I got my ass kicked every Friday night, but I didn't care because my self-esteem in that was sky-high, though my athletic friends and the guys who wrecked me every Friday night kept me humble.
Somewhere in 9th grade though, I lost all of my enjoyment for sparring. I just didn't want to fight anymore. I'm not exactly sure why, but I think it's due to a mix of boredom, anxiety, and situational depression. Two of the three TKD classes I attended were for everyone, and I was sick of doing the same old things in a class full of white and yellow belts. I couldn't do a different class though because I had school. I hated the neighborhood we lived in because I was sick of hearing gunshots and people shouting almost every night. I was exhausted because I was getting less than 7 hours of sleep every night and had to wake up super early to fight traffic. I was just ready to move onto the next chapter in life. At the end of 9th grade, we moved to the west side of town. I shamelessly left the dojo just three belts away from getting my black belt. I still don't miss that dojo or that house.
While I left TKD for other things, my appetite never decreased. If anything, as I grew further, I ate more. I still participated in extreme sports, and I needed the calories to sustain myself and my muscles.
In 10th grade, my wild game ran out. Doug had been gone for almost a couple years by then, and all of Clarke's other hunting buddies that had been supplying me with game had gone to other jobs. I lived off of steaks and greens for awhile as I worked to get my own hunter's license, and once I had it, my great uncle Courtney found an essay contest where I had a chance to win a free turkey hunt sponsored and guided by Colorado Parks and Wildlife.
By some miracle, I got an email by CPW congratulating me on winning the essay contest. By the end of the hunt, I had myself a 4 year old, 30 pound tom turkey, and ever since then I've been providing myself wild game. That wild game has been a core part of my daily diet, so
These days, I still eat huge and frequent meals. I know I don't look like it at all, but I eat about 5,000 calories everyday, which is what a lion eats every meal. My doctors have always said I don't need to ever worry about getting fat or overloading my body. I still only digest so much, but at least my body can deal with it better than it did when I was younger. My pancreas is still slowly shutting down, but at this point I'm not so concerned about adding insulin to my 6-page-long list of treatments and medications. It's minuscule compared to everything else. I just have to celebrate the fact that I've been diabetes-free for nearly 18 years, which is almost unheard of in the CF community.
My parents have urged me to capitalize on my eating habits. If I eat 1,000 calorie meals already, why not start winning cash, T-shirts, and pictures on the wall of fame at restaurants all over? Truth is, while I know I can do it, I don't really want that kind of attention. I'd rather completely my "eating challenges" at home which are regular meals to me. I know eating 3 pounds of game along with two bowls of vegetables is not someone's average meal, but it's mine and I'm proud of it.
I still like to test myself sometimes by eating even more just to push my limits. The most recent self eating challenge was to eat as many apples off my apple tree as possible. The freeze ended killed all of the apples, and in an attempt to not waste them, I ate 25 with an entire jar of peanut butter in an hour. They're small apples. Each apple off the tree is about half the size of the apples you get from the store, but I didn't know that each apple had the fiber equivalent of 5-7 prunes until later. So I spent that weekend sick and clearing my system while my mom made fun of me for it. To be honest, I regret nothing.
I'm a very adventurous and daring eater beyond eating 25 over-ripe apples with an entire 1.5 pound jar of peanut butter. I've always been adventurous and daring, but it really took off when I watched a guy on youtube eat a couple raw rocky mountain oysters in front of a bull, and then proceed to ride that bull. That same youtuber inspired me as I shoved 5,000 calories of food down my throat everyday, and now it's not that much of a challenge for me to do that anymore.
There's a restaurant in Denver called the Buckhorn Exchange. Every time I go there, I order two plates of rocky mountain oysters, a plate of rattlesnake nachos, and then I top it all off with an elk steak that comes with a side of two quails and a large baked potato with extra sour cream. It ends up being around $80, but my parents don't really care. They're just proud and happy to see me eat so much. I've only had to take a box home once, and that's because I had eaten just before we left, so I wasn't hungry enough to finish off the quails right away.
I also like going to any given sushi restaurant and ordering $20 worth in plain, raw salmon and tuna rolls, along with some eel, octopus, and flying fish sushi, and some miso soup which has seaweed in it. It's expensive, but as always, I eat it all. Sometimes I'll go to Whole Foods just to buy $100 worth in sushi-grade full salmon and tuna steaks. I'll go home, defrost a couple, and have them eaten within the hour.
I regularly eat beef liver, and just recently I added pronghorn liver, beef heart, and beef tongue to my menu. I've also had alligator, crawfish, mutton, escargot, raw sea oysters, full octopuses covered in teriyaki sauce, sea urchin, and more. I actually love the raw sea oysters and the alligator, but I wasn't a fan of the sea urchin because it has a really weird texture that I can't really explain, and I just couldn't get over it.
Other than that, I've enjoyed the taste of almost everything I've ever tried. It's the aftermath that I have to worry about. I wish I could enjoy richer, spicier foods without the later consequences, but that's just the life I live, and I have to be thankful for what I have.
Despite the fact that I can't eat rich, sugary, or processed foods without getting sick, I still eat a lot of food, and make it interesting. Sometimes I have my cheat days, where I eat a packet of bacon or a cupcake, but those days are rare and I only do them if I know I'll be home for the next day or two.
I've lost a lot of weight due to illness this year. As of now, I weigh 122 pounds soaking wet, and my doctors want me to weigh around 128-130 pounds. It sometimes takes longer to gain weight after illness, but I'll get there eventually. It just takes time and dedication.
People don't realize just how hard it is for people with CF to gain and keep weight. I can't tell you how many times people have told me I'm lucky because I can eat whatever I want and not get fat. Kids at school were sometimes jealous because I was allowed to eat in class, and also allowed to get unlimited extra lunches. But the truth is, it's not worth it.
If you think through the reasons why I can eat so much, it doesn't sound fun. Half of every meal doesn't get digested. Whatever is digested is mainly used to fight the disease, and whatever is left over is given to my body for nutrition, and most of that is used to build up my muscles. I basically have no fat on my body.
When I was little, my grandpa Bob always had a grand kid on his lap while grandma pushed us around in his wheelchair during fairs and other events. He used to have me sit on a pillow when I sat in his lap, because my seat bones would jab into his legs every time we hid a bump or a crack in the sidewalk. People also looked at me funny if I wore a two-piece bathing suit because every rib, vertebra, and shoulder blade was visible on my body, along with the scars. They'd find my parents and ask why I was so skinny and scarred, which I must admit, turned me pretty self conscious about those things.
But hey... At least I can eat whatever I want, when I want, right? Riiigghhhtttt....
I just have to make do with what I have. Cystic Fibrosis is a terrible disease, yet, it has some benefits, food being one of them. I love food, and my disease has allowed me to develop skills any competitive eater would love to have. But, I like to keep to myself, so I probably won't be participating in any public eating challenges any time soon. Maybe I'll film my daily diet and post it to the internet one day, but for now, I'll eat my 4 pound meals in peace.