By Kristen Fox
Beep, beep, beep. The sound of my alarm pierces through the fog of sleep. I rub my eyes and reach for my phone. I shut off the alarm and glance wearily at the time. 4:30 a.m. and all is as well as it can be.
I sit up in bed and feel a constriction around my chest -- my IV line is wrapped around my torso. It probably happened sometime during the night when my restless sleep had caused me to toss and turn. I untangle myself from the line and reach down to pick up my backpack, which holds my IV bag, from the floor.
The IV bag contains the formula that sustains me, that keeps me here on this earth. Without it, I'd be dead. Why? I was born with a chronic gastrointestinal disease that, at this point in time, prevents me from eating. My life source stems from an IV bag that connects to a port in my chest.
I get out of bed and began my morning routine -- a routine that's radically different than most people's.
Most girls my age get up an hour before classes begin so they can do their hair and makeup. I get up two to three hours before class so I can unhook from my IV bag, take medication, complete my morning exercises and go for a walk, which forces the muscles of my digestive system to move.
My stomach problems progressively became worse as I grew older. The diagnosis I was eventually given was gastroparesis with dismotility of the intestinal tract and hyperalgesia. In simpler terms, my digestive system became slowly paralyzed as the years passed. Hyperalgesia meant I was super-sensitive to pain and feeling.
For example, when I ate I could literally feel the food move through my digestive tract. This was something I thought everyone felt. As a child I was able to eat most things but had to steer clear of anything high in sugar, fruits and juices included, and tomatoes. I learned to work with my restrictions and live my life fairly normally. But as I became older, my dietary restrictions increased. It became so severe that doctors began to look at artificial means to keep me alive.
I received my first permanent tube in August 2011. It began in my stomach and was threaded all the way down into my small intestine. I was fed an elemental formula through the tube. The doctors were confident that if I remained on this tube for a certain length of time, my stomach would have time to heal itself, and I would ultimately be able to eat again. This, however, was not to be the case.
I seemed to be doing fine at first, but then it became apparent that my stomach still didn't want to function correctly. I spent the next few years vacillating between receiving my nutrition through the tube and physically eating. It ultimately progressed to the point where every time I ate food or was fed through the tube, I became incredibly nauseous and would vomit. The pain and bloating that accompanied the nausea and vomiting were almost unbearable. I began to lose weight rapidly and as the pounds flew from my already thin frame, I knew the doctors needed to try something new.
I remember talking to my doctor and telling him that I needed to receive nutrition via some other route, because my digestive system was failing me. A few days later the doctors placed a PICC (peripherally inserted central catheter) into my right arm and I began to receive my nutrition through my veins. The IV formula I receive is known as TPN (total parenteral nutrition). It is especially tailored for my needs and is the only thing sustaining me at this moment in time.
Throughout the day I have to stay on top of my medication doses and hook up to fluids for a couple hours so that I don't become too dehydrated. Drinking water results in vomiting, so I have to take my fluids in through my port. Not being able to eat or drink anything drives me insane at times, so I've found ways to maintain my sanity. I'll chew food in order to savor the flavor, but before I swallow I have to spit it back out. It's an odd way to eat and drink, but in reality it lets me feel somewhat normal and allows me to still enjoy food and drinks.
Many people think that living life not being able to eat is my biggest challenge, but in reality they are wrong. The hardest part for me is living with an "invisible" illness.
If I'm fully clothed, then I appear to be fine on the outside. So many people who see me for the first time don't realize that I'm sick and battling daily for my life. I've had random strangers approach me numerous times and ask me "if I'm OK" or "if I eat" or "do I need to talk to someone?" They see a skinny young girl and assume that I have an eating disorder -- an assumption that has haunted me for a good part of my life.
For many years I battled against the diagnosis of an eating disorder. The doctors couldn't figure out the root cause of my symptoms, so they instead chose to diagnose me with an eating disorder. They believed I had an aversion to food or would vomit because I didn't want to get fat from the calories in the food.
I fought against them, trying to convince them that I didn't have an eating disorder -- that I loved food, but that it just didn't love me. But they wouldn't listen. They chose to go by their textbooks instead of looking beyond them at the person I truly was.
I was confused, frustrated and depressed by their diagnosis. In the midst of my confusion, I attempted to convince myself that I had an eating disorder. I thought maybe if I acted like I had one, then I would get better because I could then complete the therapy the doctors placed me in. However, since I didn't really have an eating disorder, the therapy didn't help me and only caused me to develop many deep and painful psychological and emotional wounds -- wounds that took years to heal from. Wounds I didn't realize I had sustained until I began writing.
Through my writing, the pain and anguish I had felt for so many years came through on the paper, and I began to realize how hard it had been on me to live with this invisible illness. How difficult it had been to receive comments from strangers and doctors about how it was my fault I was sick and that if I merely changed my thinking pattern, I would get better.
As I wrote my two books, "A Blessing in Disguise" and "Blessings in Hidden Places," I began to feel peace settle over me as I let go of all the psychological and emotional pain that had accumulated over time. I began to feel free. So even though I may be sicker than I've ever been, I simultaneously feel more at peace with my life.
Living with a chronic disease isn't easy. New challenges present themselves daily, and the old challenges still remain to be tackled. However, I strive to live my life as normally as possible because if I focused my life around my disease, I would be miserable.
My biggest wish is that others would treat me as a normal person. I love when people invite me over for dinner or to go out to a restaurant with them. Sure, I can't eat, but that doesn't mean I can't enjoy being with the people I love, laughing with them and having a good time.
Just because I have a disease doesn't mean I'm unable to do anything for myself. If I need help, I'll ask, but it's best to not assume that I can't do things for myself. I'm still learning what it's like to live with a chronic disease, and you're welcome to learn right along with me.
Life is never easy for anyone. We all face challenges, and no one challenge is greater than another. We need to embrace our challenges and not let them control us. To not let them win. We need to open up to others about our struggles, because trying to fight something alone is never easy.
So let us fight together, tackling our challenges head-on. Let's treat those with illnesses as regular, normal people. Let's not make our challenges the focus of our lives. Let's instead focus on the good that surrounds us and work to live our lives to the fullest.