A determined, resilient, hard working, brave, courageous, and honest woman, who has taken the obstacles that this disease as placed in front of her, and turned them into every reason to live her life to the fullest.
At thirteen years old, Kaitlin's life was packed full of hospital visits, unanswered questions, and a diagnoses that changed everything; Late Stage Lyme Disease was about the only answer she was given to her seemingly never ending list of questions, and it was an answer that would continue to haunt her for the years that followed, limiting her to a life that was so far from the one she wanted. A life that was scattered with fear, doubt, and an overwhelming sense that this thing, this thing was never going to go away.
Despite it all, Kaitlin was determined to live beyond the limitations of this disease. So, after deciding that enough was enough, this young woman embarked on the biggest adventure yet. An adventure that would continue to be filled with hardships and let downs, but rather than having them weigh her down with doubt and uncertainty, they have given her the strength she needs to live a life so much more than Lyme.
This Is Her Story...
“Life is like the ocean. It can be calm or still, and rough or rigid, but in the end, it is always beautiful.” -Anonymous
I have found this quote to be a wonderful depiction of my life. Life is most certainly beautiful despite its great ability to be altered in an instant. The alteration of my life began when I was just thirteen years old. At thirteen, I was diagnosed with chronic Late Stage Lyme Disease, just three years after my Mom was also diagnosed with Lyme. Through years of immense pain, treatment, and countless doctor visits, I also experienced an overwhelming amount of love and support–I then saw that life is always beautiful, even in the midst of rough and rigid circumstances.
When I was first diagnosed at thirteen years old I couldn’t have imagined all that I was going to go through, from 6 years of intense treatment, immense amount of pain, and countless doctor and hospital visits. I was so young when all this began, I honestly don’t even remember what it’s like to not feel sick or to not be in pain every single day.
After my diagnoses, I immediately began treatment. First it was just a couple oral antibiotics coupled with a multitude of supplements. Then the amount of pills I was taking steadily increased. I was put on more and more antibiotics, supplements, diets, and different regimens to attempt to get rid of the disease infecting every organ and system in my body. After 4 straight years of treatment, we realised that the current treatment wasn’t working and we’d have to try something else. My health was deteriorating quickly and nothing seemed to help. I was quickly beginning to realise that my health may never be what it was before—and even worse, I couldn’t even remember what it was like to not feel sick. Every day and night I suffered from the debilitating symptoms of Lyme disease—the headaches, nausea, stomach pains, body aches, extreme fatigue, brain fog, vision issues, insomnia, light & noise sensitivity, dizziness, fainting, fever, difficulty breathing, joint pain, back and neck pain, muscle pain, cramps and spasms.. a never ending list of daily symptoms that seemed to grow as the days went on.
The next, and last, treatment option was the IV PICC line—a permanent IV that’s placed in a vein in my arm that goes directly to my heart. This option was a last resort due to the complications of the IV and the intensity of the antibiotics administered. The IV was my last medically ordained hope to live a healthy life. After a long process of getting the IV, I began treatment and went to the hospital every day for 18 months. This whole process is quite a story on it’s own so I won’t go into much detail. But needless to say, the IV treatment didn’t help much, the side effects made me quite sick, and I even had to have surgery to get my gallbladder removed due to the intensity of the antibiotics.
The one treatment that was supposed to finally cure me of this horrible disease didn’t work. I was devastated, confused, sad, hopeless...
I finally decided enough was enough—I had exhausted all of my treatment options and was still sick. For so long I had always concluded that once I was no longer suffering from Lyme disease, then my life could start. When I was in high school, I was certain that the IV treatment would work so when I began University, I’d no longer be sick and could really live my life. This thought process constantly made me disappointed because I wasn’t getting any better (much worse actually), my symptoms weren’t improving and the treatment options were dwindling. For years, I kept on waiting for my illness to be cured, thinking when that happens, then I can start living my life. Through this thought process I definitely still enjoyed my life overall, and had many happy days! But I constantly thought that once I was better, I’d be able to fully live my life, with no limitations, and no pain everyday. But I had to learn to enjoy my life, without wishing for better days to come or waiting for my circumstances to shift. So I chose to take what I have, and make the best out of each and every painful day, knowing that the treatment options for my illness were getting slimmer and slimmer.
After making the decision to stop treatment I ultimately went on to continue living the life I had always imagined, despite my constant pain and struggle with Lyme disease. Because of my illness and all the pain I have endured for so long, it gave me the passion and dedication to help others with their own pain and suffering. Because of having Lyme, I decided to pursue a career in Social Work, and it’s by far the best career I could have pursued. Helping and loving others (especially children and families) in any sort of capacity is my ultimate passion. I graduated from University with a Bachelor’s in Social Work, earning the Presidential Scholar’s award for academics. Attaining my degree at University while still being very sick took an incredible amount of dedication and determination. I had to take a couple different semesters off due to Lyme, but I ultimately was still able to accomplish something I always dreamed of doing, and finally acquired my degree. I even have plans to pursue my Master’s degree in Social Work with a duel law degree program.
I have learned that no dream is unattainable with passion, dedication and hard work—even with having a chronic illness.
After graduation from University, I then went to travel throughout Europe for two months which was truly an incredible and life changing experience. A few months later I moved to Australia by myself, where I’m currently living. Being chronically ill and deciding to move across the world is easily one of the biggest choices I’ve made. Through making this decision I am reminded everyday just how much I can accomplish in life despite my illness. Even though my symptoms and pain have not subsided in the least, I know I can accomplish anything I set out to do. I would have never imagined that I could live such a full life while still being so sick. I even am working full time as a Social Worker/Case Manager for children in foster care. I continue to do what I love—travel, surf, skate, being with friends, and most importantly, I continue to live.
This small excerpt of the past 11 years is not only filled with me being able to follow and pursue my dreams but weaved into each moment is an immense amount of pain and suffering. I still suffer every single day from pain that only has a scale from tolerable to intolerable pain. I suffer from the feeling of not being known and having no one really understand what it’s like to live with an invisible, painful, life-altering chronic illness. I have gone through an immense amount of sadness and loss—but looking back on the past 11 years (and counting) of suffering from Lyme disease, I can’t help but be grateful for this experience. It has given me a tenacious, unbending character and has allowed me to learn invaluable life lessons.
My pain and illness has guided my every big decision in life, it has brought me to where I am today and I believe it has truly shaped me into who I am. I am thankful for every situation in my life that has taught me to appreciate life to the fullest and be thankful for each and every day.
Lyme disease has taught me to have hope and strength when I am weak and hopeless. It has shown me that there can be life in the midst of suffering.
My story of being sick hasn’t ended yet—and it most likely won’t end anytime soon. Everyday I still can’t believe that I’ve been sick for over a decade, but what’s even crazier to me is that each and every day I’m able to keep pressing on. I’m able to get through each day no matter how painful. The amount that I have learned through living with a chronic illness for most of my life is something that I will forever be thankful for. I am constantly learning to hope and be joyful in the midst of any circumstance. And despite my debilitating illness, I’m living an absolutely incredible life. I live in a beautiful country most people dream of visiting; I have an amazing family who love and support me through everything; and most importantly, I am known and loved by a simply awesome God who loves, covers, and supports me each and every day of my life.
We can’t choose what happens in our life, but we can choose how we respond to it. I have experienced, it is that choice, often a difficult but powerful choice that ultimately shapes us into who we are. I try not to dwell on all my challenges but instead, I decide every morning to be grateful for something, however big or small it may be. I choose to smile and not to complain but rather focus on the good things in my life. Even when facing enormous difficulties, there can still be joy and life. So live life to fullest, because life really is truly amazing.
Everyone is going through something—I always say that “pain is pain” no matter what kind— physical, emotional, etc… What’s important is that we don’t forget to cherish each moment we can, and hold onto hope in the midst of a chaotic life. Keep laughing, loving, and smiling. Because this life is beautiful. And each day deserves to be lived to the fullest, with a happy heart full of laughter and love.