Yesterday afternoon, as I stood in front of the kitchen counter in my mismatched pajamas, pureeing my daily liquid lunch of black beans and brown rice while popping a handful of pills, I paused for a moment. I thought to myself, "How the heck did I get here?" It's a very good question that I'm sure many Lyme patients ask themselves from time to time. Late stage Lyme Disease has a funny way of turning your life upside down in such a way that it becomes barely recognizable. I'd even go as far to say that for some of us, it wreaks such havoc on our bodies that we tend to look in the mirror and wonder, "Who is that?"
You'd think that the life of a chronically ill person would be dull and monotonous, and while sometimes it is, we're also on a journey like no other, and we tend to experience things that some people never experience in their entire lifetime. If you're interested in hearing about just a portion of it, please bear with me while I reveal what it's like to be a late stage Lyme Disease patient, and how it is I actually got where I am today.
Chapter One: The Subtle Beginning
I didn't know it yet, but for me, my journey with Lyme Disease began in the 6th grade. People joked that I should probably consider becoming the next "Bubble Girl," because I started catching just about any infection that blew my way. It actually became rather disturbing, because I began to pick up some off-the-wall illnesses that your average American teen doesn't usually get. I can't tell you how many times I'd been asked "Have you traveled out of the country lately?" When I'd reply over and over again with, "No, I haven't," they'd begin to ask me, "Are you sure?" I almost felt like laughing. "Oh yea, Doc, I totally forgot, I travelled to Japan for some fresh Sushi last Thursday night." Then the digestive issues began, and it was all downhill from there.
I'll spare you the gritty details, but basically, my GI system essentially shut down. I went about once a month. Enough said! It began to get harder and harder to eat, which was both confusing and embarrassing as a pre-teen girl. I'd go to the doctor and get xrayed, and the doctor would say "Wow...I don't usually see this, and if I do, it's in very elderly patients. There's no room left for food in there!" But he didn't do anything about it, until it was too late.
By high school, all sorts of rumors had begun to fly around about me. My weight fluctuated based on how my digestive system was functioning, as did my appetite. Often times it was hard to get through lunch, and of course, gossipy teenage girls didn't let that go unnoticed. I was too humiliated to say anything though. I mean, a teenage girl really doesn't want to stand up on the bleachers and announce that her intestines are broken.
Chapter Two: Doctors Don't Always Know Best
I'm not quite sure what happened when I turned 16, but I have a sneaky suspicion that it involved a second tick bite (lord only knows when I got the first one). After returning from camp in the Santa Cruz mountains, I came down with "flu-like" symptoms and the digestive symptoms reached their peak. Four days later, we went to Hawaii, where things continued to snowball. I remember thinking that my ear drums were going to implode as our plane landed, and I distinctly recall lying in a crumpled ball on the hotel room floor that night, clutching my stomach. It felt like someone had pulled the plug on my internal bathtub of energy, and it was slowly draining out.
Upon arriving home, we went back to the doctor. This is when I became a human guinea pig. They threw just about every digestive related drug (that you now happen to see on those lawsuit commercials) at me. They told me I needed to get more sleep. I needed to "wash my hands" and "drink plenty of water." I wish life were that easy. They made me think that it was normal to feel like I was walking around with lead in my pockets and bricks in my shoes.
After conventional medicine had continued to fail us, we decided it was time to seek out some help from an alternative practitioner. He was wonderful, but I was an incredibly complicated case. He helped us to uncover that I had a boatload of food allergies. As we began eliminating them, my digestive system began to change a little, but scary things began to take place.
My diet became smaller and smaller as my body began rejecting whole categories of foods. In hindsight, we weren't educated enough on food allergies, so we weren't sure what to keep and what to cut out. We had no idea what "gluten free" really meant, and I made epic mistakes like thinking that "rye" bread was okay because none of the ingredients said "wheat." Perfect recipe for intestinal malabsorption. Despite eating mass proportions of what I thought was "safe," the weight began melting off of me faster than butter in a hot skillet.
Chapter Three: The Hospital Stay From Hell
Before I knew it, I was 17 years old, 5'7, 88 pounds, and I was lying in a hospital bed. I barely remember my 10-day stay in the hospital. I honestly think I was comatose most of the time. I wasn't aware enough to be scared. My intestines had gone into malabsorption, so no matter how much nutrition they pumped into me, my weight remained alarmingly low. My blood pressure was so low that the nurses would come in, frantic, in the middle of the night, flip on the lights, and discuss what to do with me. My heart rate tanked as well, and at some point during the stay--I don't remember it--I went into atrial fibrillation. I went into a-fib at 17 years old.
Since they didn't know what was going on and didn't have a clue how to fix it, they blamed it all on the weight loss. The only thing they couldn't tie in to the weight loss was the fact that my liver enzymes had shot through the roof (up in the 300s!), and even though my charts note that they were concerned my liver would start to give up on me, they chose not to bring it up. Despite my blood pressure being 70/30 (half of what it should be) my heart beating at 40 bpm, and my liver under dire stress, they still put me through the wringer with gastrointestinal tests. All to tell me that "your digestive system isn't working." Thanks, Sherlock.
Food moved through my system six times slower than an average person's; that means when I sit down to breakfast every morning, yesterday's breakfast has just left my stomach, and is beginning to digest. Bet you can guess what they did about it though. Nothing. So, I took matters into my own hands. I started to educate myself about diet. I learned what it really meant to be gluten free, dairy free, and essentially allergen free. Unfortunately, I also had to cut out fats and animal protein, because my broken bowels decided they just couldn't do it. I'm happy to report though, that I did bring my weight up to about 100 pounds, all by myself. That's still about 30 pounds underweight, but it was better than 88!
Chapter Four: College, or Something Like It
So, despite having no energy and a really whacked out diet, I had the bright idea to leave home and go off to college. Everyone said that there wasn't anything serious wrong with me, so in theory I'd be okay, right? Wrong. It was quite the experience. Because of the issues that were beginning to plague my body, I spent literally all of my time sleeping, studying, and cooking. It was horrible.
I met some of the most amazing people I'd ever met in my entire life, but I never got a real chance to be around them. I was far from the typical "college student." My life was a living nightmare that I was trying desperately to grin and bear. I had to cook every two hours in the community kitchen, just to keep on weight. I had to fit going to class in between my eating schedule, and on top of it, had to find time to actually do the work. I found myself trying not to cry as I stood at the sink, rubber gloves on my hands, rinsing dishes as I tried to both eat and clean up dinner at the same time. I tried to focus on the book I had lying open next to the sink, but all I could focus on was the sound of everyone laughing down the hall, as they ate pizza and played card games together.
I believe that both life and Lyme are all about lessons. Boy did I learn some in college. I now understand that my priorities were royally messed up. As I focused on maintaining A's in all my classes, I started getting F's in health. My bladder started to go on me, so I started to have to sit on the end seat in the giant lecture halls, or else I couldn't stay. I couldn't make it across the aisle in time. This meant that I also had to find time to cook, eat, study, get to class 20 minutes EARLY, do the assigned work, and sleep.
I was often so exhausted that my whole body burned, from head to toe. I was so tired it was often hard to breathe. My kidneys would send shooting pains through my mid-back when I'd least expect it. I had chest pains as I rushed through each daily task, and often woke up in the middle of the night shaking, in a cold sweat. My body finally said "enough."
I woke up one morning, and couldn't move...
Part 2 Friday.