My Story
Health Journey
Allergies, Asthma, Eczema, Crohn’s Disease, Immunocompromised
Hi! I’m Stephen. I’m 35 years old, a Mechanical Engineer, a Cyclist, and I suffer from food allergies (among other health issues).
From a young age I was diagnosed with food allergies, seasonal allergies, eczema, and asthma. I have anaphylactic (life-threatening) reactions to Peanuts, Tree Nuts (and all nut products), and Shellfish. I also had less severe allergies to Wheat, Milk, and Yellow Food Coloring. These lesser allergies I would later outgrow, but as a child they often exacerbated the eczema and asthma. Allergies are caused when the body reacts to food as if it’s attacking the body, similar to an infection. Just like with an infection, the body reacts with inflammation, which can lead to swelling and hives. With food allergies, this can occur at the point of contact, and in severe cases this is what ultimately leads to the life threatening symptoms, including respiratory distress, associated with anaphylaxis.
“I have anaphylactic (life-threatening) reactions to Peanuts, Tree Nuts, and Shellfish.”
When I was younger, not nearly as much was known about allergies, and the internet was not the resource it is today. My family navigated a young child with allergies as best they could but it was largely trial and error. Food labeling was not great and each error in the learning curve meant rushing to the ER and a near death experience for a young child who didn’t really understand what was happening. When it came to being responsible for my own health, I had to grow up very quickly. Everywhere I went there was some kind of food and I had to be the one responsible for laying ground rules for everyone around me to ensure my safety.
Its not easy for a child to convince an adult that they know better than they do about what food is safe, but that was a normal part of my life growing up. Part of these ground rules often meant that I couldn’t stay at a friends house for dinner or have any of the treats people brought to school. On occasion my classrooms were so contaminated by what others had brought to school that I had to stay home until one of my parents went to the school to clean things. Options for eating out were very slim and often limited to chains that were very consistent or didn’t have any allergens for me to worry about (very few places could claim this).
As a child, eating was constantly a stressful experience, full of pressure from other children and well-meaning but misguided adults. Even with all of that, I considered myself lucky to have two parents who were willing to work to find and cook food for me and help me learn to navigate something most people take for granted.
“As a child, eating was constantly a stressful experience, full of pressure from other children and well-meaning but misguided adults.”
In addition to the food allergies, the seasonal allergies, asthma, and eczema were a trifecta that constantly worked together to keep me largely trapped inside. Certain times of the spring and fall, when pollen was at its peak, I knew I was going to spend time in the hospital as the seasonal allergies induced unavoidable asthma attacks. Summer and winter with their heat and low humidity, respectively, led to eczema so bad that I was constantly wrapped in bandages from my itching, cracked and bleeding skin.
Just as I started to outgrow some of the lesser food allergies and started to understand to better manage my other health issues, a new problem developed: Crohn’s Disease. Crohn’s Disease is part of the IBD family and is related to inflammation in a specific area of the digestive track. It can be made worse by certain foods and I regular suffered debilitating pain that meant I couldn’t even stand or walk. It took more years to begin to figure out how to manage the Crohn’s Disease in a delicate balance with all the other health issues. By then enough damage was done and I had to have surgery to remove the digestive areas permanently damaged by repeated cycles of inflammation and scarring. Since the surgery for my Crohn’s Disease, I have had to take immunosuppressants and most likely will for the remainder of my life. Again, I consider myself lucky that my parents’ jobs and now my own job have had affordable healthcare that provided options for medicine and treatment to even have a chance to try to manage any of these health issues.
“Since the surgery for my Crohn’s Disease, I have had to take immunosuppressants and most likely will for the remainder of my life. ”
Being on immunosuppressants on top of everything else means that I’m always susceptible to other illnesses - the annual common colds often took months to fully recover from. That was before COVID-19 came along and has largely kept my wife and me trapped by ourselves for going on two years. I continue to hope that others will recognize the same science I have depended on for years to stay alive, and I hope this story will help others realize that even though others such as myself may look “normal” and healthy, we are not. Just like with the food allergies, the safety and survival of people like myself is dependent on others to listen and understand that precautions (such as wearing masks and getting vaccinated) are absolutely critical. I only wish such simple solutions existed for Allergies, Asthma, and Crohn’s Disease.
While the last couple of years have highlighted research for COVID-19, research in areas for these other health issues is still ongoing. I hope if you have read this far that you will please consider donating to a charity that can help children with food allergies have hope for healthier and safer lives. As part of my US Bike Ride challenge I will be fundraising for FARE (Food Allergy Research & Education) to raise money for food allergy research and to support food allergy advocacy and awareness activities. More information is available by clicking “Make a Donation” at either the top or bottom of this page.
“Please consider donating to a charity that can help children with food allergies have hope for healthier and safer lives.”
Cycling
Fun, Transportation, Health
Since I spent so much time trapped inside growing up, I was constantly building and fixing things. My grandfather got me started when he let me help him take apart a broken garbage disposal at the age of five. Despite my health, I eventually got a degree in Mechanical Engineering and I now work for a biotech company that makes diagnostic equipment that provides testing that is often crucial to people managing health issues like mine.
Just like my interest in taking things apart, much of the credit for my interest in cycling belongs to my grandfather. He got me interested in cycling and he has previously taken part in the ride across Minnesota. When I was younger and my health was more precarious, cycling was challenging. Peanut butter and nuts were staples for other cyclists while my snacks options were limited. Drinking fountains and restaurants that the other cyclists would stop at were normally too risky. When biking, I needed to carry everything required for my ride, including all of my food, water, an epi-pen and an inhaler.
“When biking, I needed to carry everything required for my ride, including all of my food, water, an epi-pen and an inhaler. ”
By the time I started college in St. Louis, biking 20-30 miles was routine for me - when my health would allow it. But I also found that the more I biked, the better my asthma was, and I felt happier and healthier. I took my bike to college and it was my transportation. It was how I got to class, how I got to the store for food, and how I would have fun with friends. We would bike around campus and explore the city. Any off campus event we attended involved biking and/or public transportation. I biked more and more, and went further than I ever had before.
I joined the campus cycling club and eventually bought a road bike. Soon I was regularly attending group rides and even some races. In stages, I figured out places I could stop to safely get food and fluids. Eventually I started completing 100 mile loops of the city on my own. At this point, food labeling had become more dependable and there were more options. Gas stations and fast food were more consistent, safer options, although definitely less healthy. I continued to avoid the country cafes and trailside drinking fountains.
I started to have the idea that I wanted to challenge myself to bike across the country and for a couple of summers I tried to find groups or charities that were already doing this as an event to join. Unfortunately, peanut butter and nuts still remained a staple for these cross-country trips, and no one was willing to accommodate my food allergies, let alone the rest of my health issues.
“Peanut butter and nuts still remained a staple for these cross-country trips and no one was willing to accommodate my food allergies.”
My junior year in college I had no choice but to have my surgery for the Crohn’s Disease. After the surgery I wasn’t allowed to lift more than 10 pounds, I had withdrawn from classes and I was told to expect months of recovery. At some point, boredom made me brave enough to have my roommate carry my bicycle down from our 2nd story apartment. It took me almost two hours to do the 6 mile loop of Forest Park that I could previously do in a fifth of the time. I was exhausted but happier than I had been in weeks. As often I could manage, I kept riding this 6 mile loop and by the time of my first post-surgery check-up, I felt better and had recovered more than the doctors had expected. I credit cycling for giving me the purpose and exercise. Once I graduated, I got a job, a car and got married. Cycling wasn’t my my only time-commitment and I didn’t do it as often as I would like. But I still occasionally joined friends for group rides and I continued to help people find and maintain their bikes.
In March 2020, COVID-19 changed everything for everyone. Because of my health issues, my wife and I started isolating, and we still are. Four doses of the vaccine haven’t worked for me (most likely because of the immunosuppressants). We continue to look and hope for new options and treatments might let us get back to normal, as others around us already have. While this may seem bleak, the one blessing from isolation from others and work from home was that my wife and I had plenty of time to fill. While many puzzles were completed, we ultimately turned to cycling to get us outside and get the exercise that had been sorely missing since the start of the pandemic.
“We ultimately turned to cycling to get us outside and get the exercise that had been sorely missing since the start of the pandemic”
For me, my passion for cycling quickly returned and being outside did wonders for the sour mood brought on by the pandemic. I started biking every day, when the weather permitted, and by the end of 2020, I had worn out my college road bike. I had to try to buy a new during a pandemic while cycling was booming. Thankfully, Trailhead Bicycles in the St. Louis area was willing to work with me and keep most of the exchanges outside with masks. At this point I was regularly riding 200+ miles each week. That winter I biked indoors and heading into the spring of 2021 I had had no problem riding a 100 miles in one day each weekend.
In the summer of 2021, to keep myself engaged, I challenged myself to ride the same 21 days (at half the mileage) of the Tour de France that the professional cyclists rode. I could only do half the mileage because I also was working my full time engineering job during the weekdays. This challenge turned out to be a breeze for me.
As we headed into the winter, I reflected on what I had accomplished. In 2021, I rode over 10,000 miles and decided to renew my dream to bike across the US. I was better physically prepared than I had even been before. Not taking other vacations during COVID-19 meant I could save up the time off and could afford to create my own trip. So the planning for a real challenge began. To see more about the plan for the challenging ride across the country, click on the “Route” page on this site.
“In 2021, I rode over 10,000 miles and decided to renew my dream to bike across the US.”
“Life is like riding a bicycle. To keep your balance you must keep moving”
— Albert Einstein