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Maia’s Story (Multiple Diagnoses – 10 Year Update)

maia's story multiple diagnoses 10 year update My name is Maia, 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. 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 only ten years old. Now I’m 20-years-old, and finally talking about it out loud.

Around the age of 2, I was sick every month with strep throat, ear infections, throat infections, etc. I had 3 sets of tubes put in my ears, 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 3 years than most adults are in their entire lifetime. Strangely enough, I stopped getting sick when I was 5-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-years-old 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 sever’s disease, which is related to growing pains. The orthopedic doctor decided to cast my foot and ankle for 8 weeks, but my pain increased. So, they re-casted me for an additional 4 weeks, then put me in a boot for 8 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 to request an appointment. She attached my medical records, MRI, and X-rays from when I was 2-years-old. She finished, sent the email, and held her breath. After 5 days, 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 list of illnesses:
– Juvenile Idiopathic Arthritis (JIA)
– Ankylosing Spondylitis (AS)
– Hypermobility syndrome – Ehlers Danlos Syndrome (EDS)
– Synovitis
– Enthesis Related Arthritis (ERA)
– Rheumatoid Arthritis (RA)
– Auto Immune Deficiency

Little did we know it was just the beginning.

After that, I was sent to have injections in my back and ankles which ultimately worked. I had my first pain-free day ever, but the injections only helped for so long. I haven’t had a fully pain-free day since.

One of the biggest misconceptions about my diseases is that I should look sick. However, I look perfectly normal. There is a very popular response to someone hearing about my illness, “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 that, came the next chapter. 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, but 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. At that moment, I was ready to give up, but I knew I couldn’t ever let her down. It was a significant setback because it was during Covid-19, and I was already facing daily pain and depression at that time. I was stuck at home for school and cheer was on hold.

Finally, I started my senior year of high school. It was still during Covid-19, but being back and out did help. I was accepted into college and loved life. I went out of the country and explored, but right before that 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.  It’s been two years since that diagnosis, and I haven’t needed the spine surgery because I had found other, more holistic ways to manage my pain.

After graduating high school with honors, I was ready to start college. I was only 30 minutes away from home, but 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 two times. 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 feel broken. I had never lost someone, and then to lose 2 people in 2 years felt like the world was ending. I didn’t get to say goodbye, which made it worse. After this, in the fall, I returned for my sophomore year of college. Once again, I was sick all of the time and hated my environment. I knew I needed a change.

This semester, while still taking online college classes and 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 a 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 I will never ‘get better’ and 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. I’ve been sick for half of my life, and here I am writing this at only 20-years-old. 10 years sick and 11 diagnoses. I will always FIGHT LIKE A GIRL!

Submitted 04/15/2023

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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