16/04/2023
Ten Years and Eleven Diagnoses Later….
My name is Maia Cabanas, and this is the first time I have wanted to write my own story of my medical journey. Usually, my mom writes it, but 10 years is a big deal because I’ve spent the last 10 years sick and growing up. It’s hard to write this because I am at a loss for words due to my world changing when I was ten, and now I’m twenty, finally talking about it myself, out loud.
Around the age of two, I was sick every month with strep throat, ear infections, throat infections, etc. I had three sets of tubes put in her ears and had surgery to remove my adenoids, sinus window surgery, and a cilia biopsy to rule out any infectious disease. I remained sick every month and was on more antibiotics in three years than most adults are in their entire lifetime. Strangely enough, I stopped getting sick when I was five years old. My parents were told over and over that my immune system was completely compromised but I felt great, and we went on with life as normal until November 2012.
I had just turned 11 and started complaining about ankle and foot pain. My mom’s first thought was to go to an orthopedic doctor, so we went. The orthopedic doctor said, “Don’t worry, we see this all the time.” He said I had Severs disease, which is related to growing pains. The orthopedic doctor decided to cast my foot and ankle for eight weeks, but my pain increased. So, they re-casted me for four more weeks and then put me in a boot for eight weeks, and I still got WORSE! After 18 weeks, the orthopedic doctor knew this was not an orthopedic issue and that I should see a rheumatologist.
We found a rheumatologist at the University of Miami and on April 15, 2013, I received my official diagnosis of ‘only’ ankylosing spondylitis (AS).
My mom posted her frustration on Facebook one day. It was the first time she had shared publicly that there was something really wrong with me. Someone on Facebook directed us to Cincinnati Children’s Medical Center Hospital. We lived in Florida then, and my mom emailed the doctor requesting an appointment. She attached my medical record, MRI, and X-rays from age two. She finished the email and held her breath. Five days later, Dr. Daniel Lovell wrote back and said, “I will take her case. I have read through all her medical reports, and she needs to come to Cincinnati immediately.”
On December 8, 2013, we left Florida and traveled to Cincinnati. Dr. Lovell and his team were gifts sent from heaven!! They did everything. They scheduled every test, MRI, etc. The team spent over four hours with us alone at my first appointment, figuring out how they would work to help me over the next three days. They came back and formally diagnosed me with a host of illnesses. Little did we know it was just the beginning diagnoses:
- Juvenile Idiopathic Arthritis (JIA)
- Ankylosing Spondylitis (AS)
- Hyper-mobility syndrome – Ehlers Danlos Syndrome (EDS)
- Synovitis
- Enthesis Related Arthritis (ERA)
- Rheumatoid Arthritis (RA)
- Auto Immune Deficiency
Just to start there, after all of this, I was sent to injections in my back and ankles which ultimately worked, and I had my first pain-free day ever, but it only worked for so long, and I haven’t had a full pain-free day since.
One of the biggest misconceptions about my diseases are that I look perfectly normal. There is a very popular response, “But you don’t look sick.” If you are interested, look up the Spoon Theory, it helps explain what happens when someone has invisible illnesses. I am sick, but I don’t look sick.
After this, came the next chapter, and at thar point, I was in 7th grade, we had just moved to Pennsylvania and I was diagnosed with Amplified Musculoskeletal Pain Syndrome, AMPS, it’s no joke. I was so tired of being in pain and not knowing how to manage it. I had started seeing a new hematologist at CHOP in Philadelphia, who just happened to be Dr. Lovell’s college roommate. I was admitted to a 30-day inpatient pain program at Children’s Specialized Hospital in New Jersey. It felt like I was training for the Olympics. I couldn’t imagine that I would make 5 days, let alone, 30-days. I was being taught how to live and manage my pain. After 30-days, I felt better physically and mentally. I got through it because I had to fight to make myself feel better, which is what I still continue to do every day.
I started high school and early on in my freshman year, i was diagnosed with Gastroparesis and Lupus. None of this is something a teenage girl in high school wants to add to her plate, but hey, when life throws something at you, you have to take it. I didn’t let my pain stop me. I was a 4-year varsity cheerleader and captain for 3 years .I cannot even remember how many injuries I had in high school but I wasn’t letting my illnesses stop me. I was dealing with being unable to move from pain most days or missing school when I did too much, it was worth it because I was happy.
While in high school, the worst pain I would ever feel happened. It was a different kind of pain. I lost my Nanu (grandma) to her battle with cancer, and at that moment, I was ready to give up, but I knew I couldnt let her down ever. It was a significant setback because it was during covid, and I was already facing daily pain and depression at the time and was stuck at home for school and cheer was on “hold.”
Finally, I started my senior year of high school, still during covid, but being back and being out did help. I got into college and loved life. I went out of the country and explored, but right before then came another major setback. I was diagnosed with L4-L5 Pars defect, which is a fracture in my spine. This felt like the end of the world because the thought of spine surgery was so scary, but two years later, I haven’t needed it because I had found other, more holistic ways to manage pain.
After graduating high school with honors, I was ready to start college because I was only 30 min away from home, little did I know how tough college was going to be. My pain started to skyrocket. I missed home and I was in a depressive state which made my mental pain, become additional physical pain. A month into college, I had kidney stones twice. I was always sick and didn’t want to be there. I also wasn’t happy with my environment.
Shortly after my first year, I lost my Abuelo (grandpa), which once again made me feeI broken. I had never lost someone, and then to lose two people in two years, felt like the world was ending, and I didn’t get to say goodbye which made it worse. After this, in the fall, I returned for my sophomore year of college, and once again, i was sick all the time and hated my environment. I knew I needed a change.
This semester, while still in college classes but only online, living back at home in PA, I applied to other universities. Next month, I will be moving in with my hometown best friend and transferring to a college in Florida.
The break that I have had being home over the past few months was exactly what I needed. While I have pain every day, I can manage it better, and I’m old enough to take care of myself even though I always need my parents. Over the last ten years, they have tried to push me to take over at doctor appointments and use my own voice.
I am telling my story because while I might not look sick, I am. I have a life sentence. I have had to grow up quickly, but it is okay because I have only learned how strong I am, and nothing can stop me. I hope by telling my story, I can help someone. I am lucky enough to have a great support system. My mom and dad are my best friends, and they have gotten me through it all; if it wasn’t for them, I’m not sure where I would be. My older brother is so supportive, and when his now wife entered our lives, she became part of the team. My extended family in California support me and I have become closer to my small family. My friends are unique and like my family, very understanding. They know what it takes if I am in pain and my face is bright red, or I am in a flare or have an injury. The people in my life know that even though I will never get “better” they still love and support me unconditionally. They say it takes a village, and let me tell you, mine is strong as hell.
I have found my own voice and want to be heard. Here’s what you learn very quickly: don’t take things for granted, don’t stop fighting for what you need or who you are. You aren’t only fighting for yourself; you are also fighting so everyone knows you’ll be okay. You can never give up.
I will be sick forever, but at this moment, I am okay. It’s crazy even to think that because I’ve been sick for half my life, here I am writing this at only 20 years old. Ten years sick and 11 diagnoses. I will always FIGHT LIKE A GIRL!
