Listen, I know it's long. But so has been my journey. This is my story. And I'm pretty damn proud of it.
People have always told me that having an almost-photographic memory is a gift. I’m not so sure that’s true. With a photographic memory comes the ability to remember every minute detail of a happier past, like the exact design on the chocolate ice cream cake my parents bought for my 6th birthday. It also means being able to remember every bump, every bruise, and every time I ever got hurt in such a vivid form that it seems as if it’s happening all over again.
One would think that after unmeasurable hours spent in the company of more doctors than any girl should have, the distinct memories of the pain of the past few years would eventually fade into one blurred recollection. Well, thanks to my memory, I remember it all. I remember laying on my bedroom floor in the fetal position, clutching my legs to my chest and crying for help. I remember the first time I showered in a cramped, damp corner of what they called a hospital bathroom, with a plastic zip-lock bag clinging to my arm as to not get my IV tube wet. I remember every time a doctor diverted their glance away from my pale, pleading face and blatantly said to my parents, “There’s nothing else I can do for her.” I remember not even knowing what to tell my best friends because how was I supposed to explain what was happening to me when I hadn’t the slightest clue?
The summer of my sophomore year of high school was when my usual self started to slowly drift away and it became noticeable.I stopped going to lacrosse practices and skipped out on hanging with friends because I constantly felt this indescribable sense of unnerving pain stemming from every part of me. It was as if my body morphed into my mortal enemy and was viciously fighting against me with every fiber of its being. My stomach ached constantly, my head throbbed with vengeance, and a task as simple as carrying in the groceries from the car would send me straight to the couch. I wasn’t me anymore and everything hurt.
After a few unending months of blood being drawn and medical history being recorded, I finally had a diagnosis, or so I thought. Fibromyalgia, aka an over-sensitivity to pain, and some IBS thrown into the mix. Somewhere along the way, they also claimed I had acquired a parasite, which every teenage girl just loves to hear. Doctors began to fill my system with medications intended to combat the symptoms associated with what they thought to be the variety of causes. This was the first time I tried a loose variation of a gluten-free, sugar-free and dairy-free diet in hopes of eliminating any food that could trigger a potential upset of my stomach. It worked a little bit at the time, but not enough. I tested out every holistic approach in the book, but nothing seemed to work with longevity. I felt even worse than before.
The stress of schoolwork compounded with the strain of sickness led me to miss over sixty days of school sophomore year and eventually be put on homebound instruction in order to finish at my own pace. Being homeschooled only reinforced the idea that I was different than everyone else. Bed-ridden in a world of my own, I missed out on everything. I didn’t want to be different, and I definitely did not want to be dealing with any of this. I was absolutely bitter with resentment. It wasn’t fair, and I couldn’t help but wonder, why me?
Going into my junior year, I figured that there was no way that this year could be as worse as the one prior. As it turns out, I was wrong. Shocker. History found a way to rear its ugly head and repeat itself. Once again, I was forced to face the same situation all over again, and this time, to an even greater extent. As if the pressure of ACTs, applying to college, and, of course, junior prom wasn’t enough, I had to simultaneously manage the most prevalent burden in my life - my rapidly deteriorating health.
The doctors had already provided me with a supposed diagnosis and enacted the “proper” plan of action. So, the fact that I was still suffering from excruciating pain, in my stomach especially, came as a major concern to both my doctors and myself. In hopes of getting to the bottom of what was going on and ultimately solving the mystery of me, I was scheduled for a endoscopy as soon as possible. I didn’t even know what an endoscopy was. I only knew that I would be put to sleep with anesthesia, that doctors would stick a few tubes down my throat and that, hopefully, I would wake up with an answer. Instead, I woke up with nothing besides an overwhelming grogginess and the feeling of a stinging, sore throat from the plastic tube that had been in it for hours. The tests revealed nothing. There was no indication as to what was still causing the problems that I was experiencing. I felt invalidated, defeated, and just tired.
It wasn’t until weeks after those procedures, when I turned to my parents and cried that the pain was too much to handle anymore, that I was taken into the emergency room and hospitalized for two weeks. I spent three hundred and thirty-six hours lying in a hospital bed with cold wires and piercing needles that were practically embedded into my skin. I had a team of kind nurses that tended to my every need and a loving family that stayed faithfully by my side, and I had never felt so alone. I needed a real answer in order to feel whole again, but even after two weeks of being thoroughly examined like a science experiment, that wasn’t looking like a possibility.
My time in the hospital was a wakeup call. My mom and I decided that maybe, after all, the doctor’s might be missing something. We took action into our own hands, contacted a new Gastroenterologist, and scheduled me for a colonoscopy. Unlike an endoscopy, this time, I’d have a tube stuck up my backside. Yay. Once again, I woke up from the surgery and heard the doctor say, “The test revealed nothing.” Defeated didn’t even begin to describe it.
A few days later, I got a phone call that changed everything. My new doctor reported that a further biopsy of the colonoscopy revealed that my inclination was right all along; there was something more. He said it was Crohn’s Disease, and described it in a way that fit every single one of my symptoms. I immediately hung up the phone, googled “What is Crohn’s Disease,” scanned through all the search results, and breathed the biggest sigh of relief as I told myself, “This makes sense. This is my answer.”
With this answer came the ability to move past the unknown and move on with my life. I was able to finish applying to colleges, go to my senior prom, and get my high school diploma. I even managed to study in Paris the summer before my senior year thanks to my mom coming with me and high doses of prednisone. I still shiver with fear when I hear that word and think about how puffy the steroid made my damn face. Although there is no known cure for Crohn’s Disease, the right course of treatment can help. I had never great at taking pills (my mom used to try to hide them in chocolate pudding and I would find the pills and spit them right out) so in addition to daily doses of medication, I took a stab at a gluten, sugar, and dairy-free diet, for the second time. This time, I chose what was called the SCD diet. Slowly but surely, this combination of whole, unprocessed foods and the right medicine began to work as I slowly progressed towards what I thought was remission, the closest one can come to living life with Crohn’s symptom-free. There were no more overnight stays in hospitals, no more IVs, no more wondering, no more worrying. I felt like myself again and I felt ready to take on the next four years of college.
The hard part might have been over, but that didn't mean that my health problems would magically go away when I got to Binghamton. Unfortunately, though, I pretended like they did. I was so used to being so restricted and confined that I wanted to start over and be like everyone else. Turns out, the path towards realizing that I will never be like everyone else, nor do I want to, was a long process that honestly didn’t happen until recently.
For my first two years of college, I slacked on my diet and easily forgot about my medication. Even though I knew these two things had the power to heal me, I was too tired of feeling limited and wanted to “live my life.” Worst motto ever. I lost the energy to workout and found myself getting drunk for the first times ever. Surprise: alcohol is not my stomach’s friend. Neither were the late night chicken fingers that I thought, because they were “protein”, were a better option than whatever else the dining hall was serving at 2 in the morning after a night out. It took until the winter of Sophomore year for all of this to catch up with me and I suffered from my first Crohn’s flare-up since High School.
An immunodeficiency like Crohn’s has the ability to affect your whole body, and that it did. My sinuses became unbearable, so I had to get sinus surgery, which only ended up putting my body into extreme dehydration and back in the hospital with an IV lodged in my arm once again. My mood was awful, which didn’t help my already existing resting bitch face, and my anxiety was completely out of whack. I had to do some hardcore self-reflection to work through some of these deeper mental issues, which wasn’t easy, because no one ever likes admitting they’re wrong or that something’s wrong with them. I got the flu and then ended up in the hospital with the adenovirus on top of that. That’s when I found out that my CRP number, the number which measures the levels of inflammation in your body when you have Crohn’s especially, was a whopping 106. A normal CRP level is anywhere from a 3 to a 4, so it’s safe to say that my body was screaming for help. Ironically, in an effort to not be limited in the first place, I was back to square one, right back where I started- limited, sick, and different than everyone else.
And then came the decision to go back on the SCD diet. I wasn’t all for it because, truthfully, I was still at a point in my life where I thought of food as my enemy, rather than medicine. If food could hurt me, how could it possibly heal me? It was just as much of a mental battle as it was a physical one.
I feel like it’s kind of dramatic to say that a diet changed my life, but I’m going to go ahead and say it anyway because I’m just a dramatic kind of person. My junior year of college was when I really began to make and see a change. I found a functional medicine doctor, who helped me develop a holistic approach to healing. I began to workout almost every day; I learned that not only was exercise a necessary part of the healing process, but it also became a form of therapy. I found solace while running on a treadmill, letting all my worries slip away as easily as I let my feet fly underneath me. I found both internal and physical strength from being able to lift weights. I began cooking for myself even more, trying to see my food restrictions as a daily Chopped episode where I had to create delicious meals with what I was given. I began to love food again rather than loathe it. I lost that freshman 15, but what I gained went so much further beyond that. I gained a passion for cooking, for exercising, and I gained a newfound sense of self that no one, not even myself, not even this disease, would be able to take away again. Sure, I grew apart from people as I stopped partying every night and destroying my body, but it was worth every second I spent focusing on bettering myself.
Flash forward a few months and I was taking on the world by storm while studying abroad in Barcelona, Spain. Luckily, I had an apartment in my kitchen and I could meal prep during the week, but being in a foreign country and traveling every single weekend definitely started to take a toll on my body. Did I try my best to stick to my diet and get to the gym whenever I could? Yes. Did I have to eat a piece of bread while sleeping in the middle of the Sahara Desert? Yup.
I took care of my body as best as I could, but when I returned home, I knew something was off again. I would eat a piece of spinach and bloat instantly. It didn’t make sense. I was experiencing random, stabbing stomach pains again, so I went to my gastroenterologist. Fortunately, my Crohn’s wasn’t the issue. In fact, it was better than ever apparently, with my CRP well-below the staggering 106 that it used to be. If it wasn’t my Crohn’s, it had to be something else. I went back to my functional medicine doctor in search of some more holistic answers and found out that I had virtually no stomach acid whatsoever. Now, I know what you’re thinking. People have to take acid reducers all the time, so isn’t having no stomach acid a good thing? Yeah, no. It’s not. You need the right balance of stomach acid in your gut biome in order to be able to properly digest food, which I wasn’t. My functional medicine doctor prescribed me a series of natural medications to start and also suggested that I go on the low fodmap diet. Among other things, it meant no apples (I was obsessed), no onions, no garlic, and no fun.
It sucked at first. It sucked almost as much as starting the SCD diet did. Just when I thought I had it all figured out, I was given another diagnosis to deal with and another diet to follow.
Yet, with this frustration came a deeper realization. I had been through hell and back; this was nothing.
I refused to let this set me back. Instead, I saw it as a new opportunity. There had to be people out there who could benefit from what I had learned and what I had been through. There had to be people out there with Crohn’s and autoimmune diseases and gluten intolerances and a steadfast determination to not let those conditions constrict them from living their best lives. There had to be someone, someone like me, to help them. And that was the spark that lit my fire; that was how The No Gluten Girl came to be.
I wouldn’t have been able to come out on the other side of this all if it wasn’t for my family. Honestly, truly, deeply, I’ll never be able to put into words how thankful I am to have a mom who took on every ounce of pain as if it was her own, who devoted every spare second to helping me find answers when she wasn’t helping her own patients. To have a dad who was always the steady rock in the sea of the crashing unknown. To have a brother who kept me laughing and smiling the whole way through. You know the saying, it takes a village.
Sitting here, reading this back to myself, retelling the story of this painful past and recalling every detail thanks to that memory of mine, all I can think is holy crap. I really did that. When you’ve gone through what I have, it’s so easy to give up and accept defeat. I wanted to so many times. I wanted to let the anger, the frustration, consume me and sink into nothingness. But I didn’t. I lost myself, found myself, and lost myself again, only to pick myself back up every time and keep on fighting. Based on pure history and the sheer truths of life, I won’t be surprised if I’m faced with another challenge in the future - but guess what I’ve learned? I’ll face it head on, I’ll fight it, and I’ll conquer it. That is, and that will always be, my story.