My Story: The Introduction
Before I got sick, I was working full-time in a physically demanding job, while taking five classes per semester toward my third degree. I did all of this while actively pursuing artistic and literary goals and maintaining a rich social life. A typical day would include a couple of classes, a six-hour shift, homework, then staying up late with friends at local shows and concerts. To cap it all off, I would recharge with four or five hours of sleep before doing it all again the next day.
All of a sudden, in October of 2011, everything changed. For a couple weeks, I was beginning to feel run-down. I was tired, my joints ached, and I was running out of breath easily. I blamed my busy schedule. When I found myself bedridden, I assumed that it must be a case of the flu. I wish that had been the case.
Weeks were passing and I was not improving. Pain in my joints made it nearly impossible to climb the stairs to get to my classrooms, or even into my apartment. No matter how I tried, I was finding it impossible to focus in class. My vision was blurring so badly that I suddenly had trouble reading the board, making lectures even harder to follow. Though I had graduated Magne Cum Laude with my previous degree while working full-time, I was now finding it necessary to drop some of my classes while only working 20 hours in a week. Switching to part-time meant I had to forfeit my scholarship.
It was easy to blame the back pain on all the books.
I kept making excuses to myself, saying I was just tired or stressed, and that's why I still wan't getting over the "flu." By this point I had dropped two classes already. I was sleeping a minimum of ten hours a night, eating healthier, and drinking close to a gallon of water a day. I was dangerously thin already and losing weight at an alarming rate, no matter how much I ate. Finally, I could no longer ignore it when I began experiencing constant tremors, that quickly grew worse. They became convulsions powerful enough to throw me off-balance.
Doctors did nothing for me. They attributed my symptoms to lack of sleep, when I was getting ten hours a night. They called it dehydration while I drank over a gallon a day. They even had the nerve to tell me it was stress when the only stress in my life was a physical inability to handle the most basic of my responsibilities. I had to drop the rest of my classes and quit my job because I was so frequently unable to even leave the house. I was finally forced to use the last of my savings and order a test for myself online.
Due to sheer luck, I had a nearby friend whose parents were in the medical field. She told me about a website where I could request my own test without needing to involve a doctor. (Click here to do this for yourself.) I could then walk in to any Lab Corp location in the country to get the blood drawn.
I had reached a point where I was unable to drive, due to visual difficulties. It took me about week and a half to find a ride to the testing center. Once I did, it would be another week or so before I got the results in. The building anxiety as I waited was overwhelming. Every hour became an eternity, waiting to find out what my future was going to be. I was hanging in limbo, hardly able to even take care of myself.
This was about all I could afford, and all I had the energy to make.
I was 1,500 miles away from my family, sitting in my apartment with rent and bills growing but with no way to pay them. I could hardly make it to the grocery store just a few blocks away, and now I certainly couldn't afford delivery. Finally, I received the email with my lab results. For a while, I just stared blankly, trying to make sense of the dark symbols on the glowing screen. When it all came together, I burst into tears, and once I regained composure, I called my mother. There was no more pretending. Right in front of me, there was proof.
I already knew how horrendous Chronic Lyme Disease could be. I had watched my sister struggle with it for ten years. Not only were her symptoms debilitating, but doctors would rarely believe her. When they did, it was rare they could recognize the condition, let alone treat it. At long last, she had found a doctor who could help and was gradually recovering.
Because I had witnessed her trials personally, I knew that my fight was far from over. Just because I had identified my mystery illness did not mean it was going to be smooth sailing from there on out. I knew I would have to fight to get treatment, and even once I had a willing and able provider, it would be quite some time before I would be feeling anything close to "healthy" again.
At least I was prepared for the battle.