“When people hear my story their typical response is, ‘You are not old enough to be going through this.’ But as a pediatric nurse, and patient, I have learned that disease is no respecter of age. Some of the most courageous health warriors I have ever met were still in diapers.
I was diagnosed with Crohn’s Disease at the age of 10. I walked through years of surgery, hospital stays, countless infusions, months of TPN, and gained quite a few impressive scars. Eventually my health became relatively stable. For years, I got infusions every month so that kept my disease well controlled. Inspired by my healthcare team, I became a pediatric nurse with a passion to help kids with chronic illness live the fullest lives possible.
In the spring of 2016 I was planning a wedding, working as a nurse, finishing my first year of grad school to become a nurse practitioner, training for my third Detroit Marathon, and had a full summer triathlon race schedule. At the end of May, my husband Mario and I stood in front of family and friends and vowed to love each other ‘in sickness and in health.’ Little did we know how vividly those vows would be tested.
Just months later, I became acutely ill. I remember running out of a patient’s room to throw up in the employee bathroom. I felt as though I was the one who ought to be in the hospital bed. I started passing out frequently, I vomited every time I ate or drank, and I began to rapidly lose weight. Three hospitalizations, and 20 pounds later, I was diagnosed with gastroparesis, intestinal dysmotility, and postural orthostatic tachycardia syndrome.
I was later diagnosed with a total dysfunction of my autonomic nervous system- a rare disease called autoimmune autonomic ganglionopathy, or pandysautonomia. Our autonomic nervous system controls many of the things we don’t even have to think about- they are automatic. It helps to control our heart rate and blood pressure, the way our food is processed, and helps our bodies regulate our temperature by sweating. My body has a difficult time performing those functions.
Coming to these diagnoses were not easy. I endured countless scopes, scans, failed medication trials, and tears. I even had Botox injected into my stomach valve. One particularly traumatizing test involved me lying on a stretcher with a tube taped to my cheek that went down my throat and to my intestines. The tube connected me to a computerized device that measured the movement of my GI tract. I had to remain lying there for nearly 12 hours with no visitors or entertainment in order to minimize stimulation and maintain the validity of the results. While I understood the medical reasoning behind that, it was one of the most dehumanizing experiences I have ever had to endure. I will never forget the intense desire to pull the tube out and tell them I was done.
The effects of my disease are life-altering. It has taken away my ability to eat normally, perform basic functions, and do many of the things I am passionate about. I am nearly always nauseas, frequently lightheaded, in pain, I pass out often, and I am constantly both craving to enjoy food while hating the way food emphasizes those symptoms. I cannot remember the last time I ate and did not vomit. To maintain my nutrition, I have a port, a central IV line that goes to my heart. Every day I hook my port up to a milky white IV bag of TPN, a fluid that contains all the nutrition I need to sustain life and carry it around in a backpack for 12 hours. I cannot drink water, so I stay hydrated by visiting an infusion clinic.
During my first week of clinicals at a pediatrician’s office, I barely made it out of a patient’s room before I collapsed in the hallway. Soon I was wearing more than a stethoscope as EMT’s placed oxygen tubing on my head and carried me out on a stretcher. Thankfully that sweet pediatrician allowed me to come back. I managed to muscle my way through grad school, with the help of family and friends, and an incredulous amount of IV fluids. I was hospitalized the week before my final presentation and finalized my slides from my hospital bed. I was discharged the night before my presentation, and my TPN pump only beeped once during the presentation.
In the Fall of 2016 I missed my first race ever. I had spent years growing in my love of running, biking, and racing. Mario and I were thrilled to be able to share that passion. Instead of seeing movies, or going out to dinner, our typical date consisted of a bike ride or trail run. As I watched Mario cross the finish line alone that Fall, we had no idea how significantly we would have to adapt our lives in the coming months. Throughout our relationship we had thrived on activities that required the most energy and adrenaline. As I now risked passing out just standing up too quickly, we were navigating very new territory.
I remember being nervous to tell Mario that I needed to have a central line placed; that his new wife would have tubing permanently coming from her body. He dissolved all reservations when he said, ‘That’s great! Now you’ll be able to stay hydrated!’ A few months later I had to break the news that I would be hospitalized for a week to start IV nutrition, and every day thereafter his wife would be hooked up to an IV for a better part of the day. Again, his resilience and positivity stunned me as he excitedly celebrated that my malnutrition would be addressed. My health has tested our wedding vows in ways we did not expect and would not choose. But I feel more closely tied, and more wildly honored to be one with a man who has looked in the face of difficulty and committed to fight together for joy.
Due to complications I have had 4 different central lines within the last 6 months. 3 of which we’re all placed within a matter of 2 weeks. Mario and I missed Mother’s Day brunch when I ended up in the ER with a blood clot, and a very bruised and swollen arm. After noticing the signs of another blood clot just a week later, I felt as though my body was fighting the lifeline meant to sustain it. Because of these complications I had to add an injection of a blood thinner to my daily medication regimen.
Mario, our parents, my sisters, and my incredible friends have taught me an innumerable amount about true love. They have spent hours playing board games with me in every smelly hospital room I have been in and graced every uncomfortable ER chair that has been offered. They have taught me that love is not merely a feeling void of actions. Love is deeply seated in action. Love does.
Throughout my journey I have been wildly thankful to learn how to have joy through pain. It’s easy to get blinded by tough stuff, but when you look at life through a lens of gratitude you have the insane opportunity to see the gift in everything. Illness has taken away much, but it has taught me even more. There are many moments when I cry out to God to remove this trial from my life, and although my body is not yet healed, and may never be, He has used it to teach me innumerable lessons.
Illness has helped me learn how to better see the brilliant tree of life through the leaves of brokenness that can obscure its beauty if we let them. It has taught me how to more fully enjoy a sunny day when I am well enough to do so. And it has taught me that I can just as fully enjoy the gift of rain, and the astounding way it emphasizes the intricately exquisite colors of creation. It has taught me that there is a person behind every job role, and I can find friendship with every receptionist, technician, and nurse I interact with. In a world that points to success as ultimate, I have learned that pursuing relationships is far more meaningful than pursuing monetary gain or successful positions and titles. And I have discovered that the deep joy that can be found amidst trials is far greater than the empty happiness that lies in easy and pleasant circumstances. I learn more and more every day that good and hard beautifully coexist. Though the details of my difficulties are likely different from yours, everyone is fighting a battle. Whether that battle looks like health trials, job trials, relationship trials, or the travail of walking through mundane, dull seeming circumstances, each one has the potential to shape us into more purposeful souls. But we must let them.
We must change our perspective to view our circumstances as what they are. They are not ultimate, but they can teach us ultimate lessons. But those lessons must be chosen. I have to wake up every day and determine what battle I am going to fight. My battle is not against my health issues. My battle is in identifying my exceeding joy. In removing the lens that sees the circumstances of this life as ultimate and adopting the perspective that identifies my true hope. A hope that anchors my soul and positions it in something far more eternal.”
This story was submitted to Love What Matters by Melissa Blazo, 28, of Michigan. You can follow her on Instagram here and her website here. Submit your story here, and subscribe to our best stories in our free newsletter here.
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