Chronic Lyme orignal song & story
by Kelsey O’Brien
“My first symptoms started back when I was 11 years old. Joint problems and a so-called, unexplained back and rib injury. At the time, we tried every doctor, treatment, medication and pain killer we could think of. It got to the point where nothing affected the excruciating pain I was experiencing, and many doctors had admitted that they couldn’t help me. Although my body felt broken, countless X-rays, MRIs, CT scans, blood tests claimed that everything was fine.
For those of you with Lyme know that the journey up until the actual diagnosis is truly a devastating, frustrating and confusing time. Mine happened to be about five years long, BUT I got through it. I finally found that I had Lyme in May of 2013. At the time, I was so relieved. I had an actual diagnosis, started treatment, and finally had an explanation whenever anybody asked what was wrong with me (because no, I wasn’t faking it!!).
I thought I was going to get better and all the health complications I had gone through were going to be put in the past. But, because I was so unfamiliar with this illness, at first, what I didn’t realize was how crazy the Lyme world really is. A year ago, when I started my senior year, was when Lyme affected me neurologically. Once Lyme gets into your brain, it completely takes over you and your life, and all you can do is watch.
I started developing mental confusion (lack of understanding, focus, concentration). I started noticing the memory loss, blurry vision, chronic fatigue, insane headaches/migraines, as well as the continuous severe joint pains, and other symptoms I’m probably forgetting. I could no longer physically or mentally handle school… or anything else for that matter. I got my PICC line put in back in January, and for the first few months of the IV treatment, I minimally was able to leave bed.
Side story; when I was getting my PICC line put in, the nurse at the hospital was commenting on how I must have been excited I got to miss school….little did he know that I hadn’t stepped foot in my school for nearly two months. Just goes to show how people truly don’t GET it. Eventually, I was able to get a tutor and got myself to graduate high school. Now, I’m almost 18, and although I’m still sick with many of the same symptoms, I’m not as bad as I once was. I’m going into my ninth month of IV antibiotics as well as the other additional oral antibiotics and medications.
I wrote this song because as tough as it is having a disease, having one that lacks knowledge, research, and understanding from people, including the medical field, is even tougher. I wanted to try and explain what it was like to live with Lyme and how it feels knowing that not everyone believes in it, or is willing to fight for those who are suffering from it.
This illness has changed me and my life in more ways than I ever could have imagined, and I know that there are millions of others out there who are going through the exact same thing, if not much worse.
I hope everyone going through this experience is able to relate to my song and story. We must continue to spread awareness and fight for proper testing, diagnosing, treatment, and most importantly, a cure!”