I was Perfectly Healthy Until I Turned 13
After a stomach virus in 2017 when I was 13, I started having a lot of pain after eating, dizziness, and other debilitating health issues. After years of misdiagnosis, I learned I have three rare abdominal vascular compression syndromes (Median Arcuate Ligament Syndrome MALS, Nutcracker Syndrome NCS, Superior Mesenteric Artery Syndrome SMAS), and an iliac vein birth defect. These vascular compression syndromes prevent proper blood flow and compromise my stomach and colon function. The vascular compressions also contribute to Dysautonomia, an autonomic nervous system disorder where your nerves don't properly send or receive messages, and causes extreme heart rate increases, drops in blood pressure, and doesn't allow my body to regulate my body temperature. I also have hypermotility Ehlers Danlos syndrome, a condition that causes connective tissue issues and makes my joints prone to sublux. As a result of these rare conditions, I have to get my nutrition from a feeding tube and fluids via IV. Last summer, I had a 7-hour surgery in Germany to fix my vascular compressions. Unfortunately, I've been having more pain after this surgery, so I'm also learning how to live and cope with chronic pain.
I'm Determined to Succeed Despite My Limitations
My education has been vital to me so I've been determined to work hard despite my health limitations. My journey through high school has been far from easy. I haven’t been able to have the typical high school experience. I can no longer play the sports that I used to love. I have been doing school online since 8th grade and I really miss the in-person social interaction. The online program at my High School has been excellent and has allowed me to complete my coursework in the hospital, on the road for medical treatment, and as I recovered from my surgery in Germany. My teachers have all been incredibly supportive. Despite everything I've gone through, I've worked hard to prioritize my education and have maintained good grades. It hasn't been easy and there are days when I really want to give up, but I try to remain positive and I'm determined not to let my health conditions get in the way of my academic success.
It's Important to Give Back
I've been learning to find purpose in my health journey by trying to make a difference in the lives of others. Chronic illness has taught me the importance of selfless service and how reaching out to someone else who is struggling with some words of hope can brighten someone's day. So many people have made a big difference for me while I've been sick and so I've learned that even the smallest act of kindness can make a big difference in someone else's life.
Baking has been my therapy so I used my creativity to start a baking business. I specialize in custom sugar cookies, cakes, and hot cocoa bombs and will be teaching online classes soon. I volunteer as a Soldier’s Angel on the Angel Bakers Team for the military and mail monthly packages of homemade cookies to service men and women around the world. I also raise awareness for rare illnesses by donating proceeds from my baking business to medical research. I love to thank the nurses and doctors who treat me by bringing them homemade cookies as a small gesture of appreciation.
I hope my story is a reminder that if we dig deep, we have the strength to overcome even the most daunting challenges. While dealing with my rare disease hasn’t been easy, I hope to defy the odds and continue to inspire those around me with hope, strength, and resilience.
💜 Grace
