21 Songs I Cling to Because of Lyme Disease
Music is such a powerful way to connect to others and even yourself. A lot of times, the songs we cling to are echoing the messages from our souls that our hearts need so desperately to hear.
Some of these were actually written about life with Lyme disease – numbers one and two, are for sure. Others, they may sound like break up songs to some, but having a disease try to take over your body and mind, so often there is internal conflict taking place. Yet, we just can’t “leave” our bodies.
Without further adieu…
21 songs for when you have chronic Lyme disease, chronic illness and chronic pain:
1. “Head Above Water” by Avril Lavigne
2. “It’s Not Over Yet” for KING & COUNTRY
3. “Carry You” by Ruelle ft. Fluerie
4. “Like Lions” by Blind Pilots
5. “This Is Me” from the “Greatest Showman” Soundtrack
6. “Hold On” by Alabama Shakes
7. “The Cure” by Lady Gaga
8. “Oh My Soul” by Casting Crowns
9. “You’re Gonna Be Ok” by Jenn Johnson
10. “Back Down South” by Kings of Leon
11. “Comeback Story” by Kings of Leon
12. “Rise Up” by Andra Day
13. “The Screen Door and Me” by Lou Ruiz
14. “Head Held High” by Caly Bevier
15. “The Fighter” by In This Moment
16. “Ragged Company” by Grace Potter & The Nocturnals Featuring Willie Nelson
17. “Believe” by Mumford and Sons
18.”Kindly Calm Me Down” by Meghan Trainor
19. “Cry Pretty” by Carrie Underwood
20. “Beautifully Human” by Maddie Zahm
21. “King of Anything” by Sara Bareilles
This playlist, a pair of noise canceling headphones and an amazing hammock…personal happy place every time. Soul is refreshed and we can breathe again.
I'm searching for the words to try to explain my journey fighting Lyme Disease and all that go along with this life-altering diagnosis. In 2010 my world came crashing down when I was told those earth shattering words that many of us live to fear, “You have cancer.” I was in Washington state at the time and thankfully my mom was able to fly in and join the support system I had there. From there we came back to Mississippi and was seen at West Clinic and after two biopsies determining that they believed I had Non-Hodgkins Lymphoma. By the grace of God my tumors disappeared. I can remember being in the hospital and asking about Lyme disease. It was brushed off and treatment for histoplasmosis began. Several PICC lines and countless vials of IV medicine over an almost year and half process that round of treatment was ended. The next few years were spent in and out of the hospital and emergency rooms. A list of specialists a mile long diagnosed me with a list of diseases and disorders equally as long. With each new diagnosis or symptom, a new medication was added. It was only a matter of time before my body crashed under the weight of all the medications. In 2013 I was diagnosed with late stage neurological Lyme disease. The tests showed that I was undiagnosed for over 7 years. The crazy thing is that Lyme can mimic or cause Lymphoma so all those years I spent treating something that was caused by my Lyme disease. I started the first round of antibiotics via a PICC line in late 2013. By March of 2014 I had endured six PICC line infections, removals and replacements when the doctor's decided to put in a portacath. After nine months of IV antibiotics treatment twice a day of 3 different medications my body was falling apart. In the process of trying to kill my Lyme and coinfections the treatment was unfortunately killing me. I was bedridden most of the time and unable to enjoy life or even participate. It was after a very honest talk with my doctors that we realized this was not the path for healing. I worked hard over the next year and a half to try to rebuild my body after the havoc of Lyme and treatment. I lost 120 pounds, started eating healthy and exercising and took myself off every pain medication/ pharmaceutical that were flooding my body. It was during this time of sickness and hope for recovery that I found my true passion in life and enrolled in college to one day become a pediatric oncology nurse. Sadly, this window of health was short lived and by the end of 2017 I was beginning to show symptoms of my disease no longer being in remission. In early April of 2018 I was forced to face the truth and resigned from my job and started the process again of IV antibiotics treatment. Within the first dose of treatment the side effects began, chronic nausea and vomiting for hours on end. Excruciating pain and migraines coupled with severe muscle spasms and the loss of any muscle control at times. I don't know how to explain to someone that hasn't been through a life changing chronic illness what it is like to feel yourself slipping away. Or the overwhelming fear when you stare down at your own legs and your unable to stop the violent convulsions. Or the heartbreak that comes with discovering your teeth are breaking off because of the acids from throwing up so much and so often. And in the midst of all of this turmoil, knowing if you could only have access to higher qualified doctors and healers that you could return to a better quality of life; not confined to the four walls of your bedroom which has now transformed into a mini hospital unit. As it stands now, my doctor has informed me that I am out of options for beating this disease. The ONLY next available step is to check into a treatment facility that is designed to treat the disease and heal my body. I've been blessed in my life to have experienced some amazing and miraculous events. I'm truly grateful for having some of the kindest and most compassionate people sprinkled in throughout my life and over the years with this gruesome journey of living with a life-threatening disease. My fear is that at only 33 years old, after overcoming every struggle so far that this disease will rob me of so many more life experiences that were once in store for me. Or that even worse, I will continue to slowly deteriorate until I'm no longer myself or unable to recognize those I love or them me. In the meantime, I want to raise awareness about this disease and what it truly does to someone.
lymesouthernbelle