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Cadie’s Lyme Story

cadie lyme 2I had blocked out the last 3 years of my life. I don’t think it was on purpose. It was just that my brain decided that it was so painful there was no point in remembering it. And I knew if I tried to uncover it, it would send me on an emotional roller coaster that I was not ready to ride. But if this helps my family or gives others hope, I am going to jump on and tell my Lyme story.

I started begging my parents to put me in ballet class when I was 3 years old. Year after year my passion for dance infested every part of me. When I was 10, I had a bit of a rough year and a half until I was diagnosed with Celiac Disease.  But I always came back to dance — it was my happy place. Then one day in July of 2012 I started getting sharp pains in one knee. The next day it was in both knees. Then an unbearable ache in my legs developed. Unfortunately, that was just the start.

No one on earth knew how bad of condition I was in except for my parents and my doctor. I just didn’t want to tell anyone. It was a combination of not wanting anyone to worry and not wanting anyone to think I was weak. However, based on the experiences I have had with people over my journey, I now know that keeping quiet might not have been the best idea. In the beginning, all the doctors I went to see said I was just depressed and that the pain was all in my head. How could the pain be all in my head if I didn’t know that much pain even existed. I now know that that is not that uncommon, which saddens me. After dozens of doctors saying the same things — depression, fibromyalgia, anorexia, anxiety — I actually started to believe them. Then I found my doctor, a doctor specializing in Lyme Disease. After 4 months, someone finally believed me. At the time I thought, “Great, a few months of treatment and I will be back in the studio.” — oh silly, naive me.

Cadie Lyme 1My symptoms included: joint pain, muscle aches, chills, chronic fatigue, migraines, tunnel vision, memory loss, concentration issues, foggy headedness, congestion, muscle twitches, stomach pain, nausea, loss of appetite, chest pain, heart palpitations, vertigo, nerve pain and depression. From the age of 14 until I was 16 — 24 hours a day, 7 days a week — that was my life. Lots of people think I’m lying or at least exaggerating. Even those that I thought were my best friends turned on me saying I was searching for attention. My decision to not share my pain ended up hurting me and isolating me in many ways. I was taken out of high school and was home tutored because I was unable to get through the day without multiple naps and/or sugar boosts to try keep me alert. I had no one going through the same thing I did. I felt so alone.

Ballet was always and still is my magical escape. I could get lost in the moment. When I jump I feel like I am flying, and when I turn it is like I am a top. It brings me the most indescribable joy to me. When I got Lyme disease and had to stop dancing a part of me was missing. My heart crumbled, and I was too exhausted to put it back together again. I was only allowed to do the Christmas Nutcracker performance, I think mostly because everyone was concerned about my emotional state. After rehearsals I was carried from the car upstairs into my bed because even if I tried standing my body was too weak to hold me and I would fall to the floor.

I have been rushed to the Emergency Room via ambulance for my scariest symptoms — heart pain and palpitations. Every night for 2 years straight I would cry myself to sleep. I would wake up in the middle of night and scream into my pillow because of the pain. I would actually fall asleep not caring if I would wake up in the morning. With my extensive physical pain along frequent inability to dance, I felt I had nothing to live for.

Over the years I have been treated with over 5 different kinds of oral antibiotics including Doxycycline, Zithromax and Tinidazole. Then about a year after I was diagnosed, my doctor decided to try a midline IV (Oh, I forgot to mention I have a needle phobia and can’t stand needles…not at all!) But anyways, after the midline was inserted by a nurse while I was on my family room couch, I had my first infusion.  My throat started to itch during the infusion so that ended that antibiotic.

Then we jumped to trying a PICC line, which was necessary for the new antibiotic. This one we had to go to the hospital to insert. I also hate hospitals. They are too white and have unbearable fluorescent lights. One traumatic experience later, the PICC was inserted and I went home. However, over the next month or so there were complications. My chest pain worsened and I start getting more and more heart palpitations. These reactions got worse whenever I laid on my left side. Because of this, the PICC was pulled as well. Then my Lyme doctor decided to try another midline with that same antibiotic so yet another Midline was inserted. However, with the next few infusions of antibiotics I developed a sharp pain where the end of the midline ended in my vein.

As a result of all those IV problems, my doctor gave up on IV antibiotics, and we started with Bicillin injections. My buttocks turned into a pincushion. Because the Bicillin is so thick, it is even more painful than a regular shot. I describe it as an angry rhino injecting me with shards of glass and knifes. After about 70 injections over about 8 months, my doctor determined the antibiotics worked and I no longer needed injections. Now I am just on supplements and homeopathics for any flare ups that might come my way.

2015_Cadie-03

So I am actually doing very well now! I have been off of antibiotics since September of 2014. I have been dancing as much as possible. And I have never been so happy.

While in recovery, I met the great Madame Phyllis Latin, who told me that even with my lost years she could still make my dreams come true and make me a professional dancer! She has not only molded me physically, but emotionally and intellectually as well. This winter I auditioned for Summer Intensives and got into multiple highly competitive programs!

I am so excited that I have found the support system I need in my family and friends now, and I am back to my bubbly self. However, I know there are others out there suffering from Lyme Disease just like I did. That is part of the reason I want to become a professional athlete. I want to accomplish it not only for me, but also to be a success story for others —  so that maybe I can help lift them when they need it. I want to give help to those who are hopeless and give strength to those who feel weak.

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