Riding on Insulin

Professional snowboarder Sean Busby started competing at age 14 and began training for the Winter Olympics at 16. But in 2004, at age 19, Sean’s troubling bouts of thirst and weariness were revealed as symptoms of type 1 diabetes.

Undismayed, Sean quickly established his “Riding on Insulin” ski and snowboard day camps for diabetic youths. He also founded “Powder Lines,” a backcountry mountain guiding business with the mission of snowboarding in remote environments to demonstrate that anything is possible with proper diabetes management. He has been on rigorous expeditions to Patagonia, Iceland, New Zealand, and Antarctica.

Recently, Sean talked with Diabetes Health publisher and editor-in-chief Nadia Al-Samarrie about his diabetes journey.

 

Nadia: When you were training for the Olympics, what symptoms did you experience? Did you think you had a common ailment, or were your symptoms more dramatic?

Sean: Throughout the entire season, I had on-and-off nausea and was always extremely tired. I was becoming frequently ill, much more than normal for me. It included symptoms like vomiting and walking around feeling like I had the flu. But I had a lot of teammates who were just coming back from competitions in Europe, and they were also sick. I thought that I’d just caught some weird bug that they’d brought back from Europe, so I just went on with my daily life.

Things started getting a lot worse in the spring. Some of the athletes on the team I was training with actually came to talk to me because they noticed that I was unable to get out of bed and get to training on time. I was too tired. I’d go to sleep thinking I’d get my eight hours, but would awake feeling like I’d only gotten one. I remember thinking it was fairly odd and worrying that I could be losing my chance to continue training toward my dream and goals.

When it really started to progress, I’d go to the local grocery store and buy gallon-size jugs of grape juice and fill up my shopping cart with mostly fluids. I figured, OK, it’s spring and I’m training really hard, and the season’s warmer than winter, so I thought I was just really thirsty. Then it got to the point where two hours after I ate or drank anything that had sugar in it, I would be vomiting. I became afraid to eat or drink because I knew that I’d soon be vomiting. I didn’t know that it was diabetes at the time, but I look back now and see that my sugars were hitting extreme peaks.

Nadia: What did you think was going on?

Sean: I honestly I thought I had an ulcer. (Laughs.) By the way, I had no clue what an ulcer was. I just wasn’t used to being sick. Here I was, 19 years old and free of disease all of my life. The only time I went to doctors was for an occasional physical. The only things I worried about were the occasional pimple or whether some girl liked me. So this was a completely new experience.

I started going to the hospital emergency room. I was turned away multiple times within, I think, a seven-day period. I would go in pretty much every day or every other day, and they would tell me that I had a really bad bug and that there was nothing they could do for me. “Come back if it continues,” they said. So it continued, and I kept coming back. The following week I scheduled a doctor’s appointment. I was sitting in the doctor’s waiting room when the doctor came in and took one look at me. He instantly admitted me into the hospital for nine days.

Nadia: Did the doctor know you have diabetes, or did he admit you to the hospital to give you a battery of tests?

Sean: Well, he knew that my sugars were high, but it wasn’t anything that was alarming him at that point. He just thought it was a lot of stress in my body. But he admitted me to the hospital because he knew something was wrong. He did a battery of tests and at that point figured out it was pretty much diabetes.

Nadia: Were you able to pay for the hospitalization?

Sean: That turned out to be a fiasco. I was still under my parents’ health insurance since I was 19, but they told me that my health insurance wouldn’t cover me outside of California, where I was originally from. The people at the hospital said all they could really do was stabilize me. By this time I had also developed a severe case of pneumonia. So now they had several things they had to try to get stabilized.

Nadia: What did stabilizing you involve? Did they give you insulin?

Sean: No insulin. They tried to get me rehydrated, but noticed that the saline solution they were giving me had some sugar in it, which was causing me to vomit. They asked if there was a history of diabetes in the family. I answered yes. One morning when my breakfast arrived, it had a big cinnamon roll, which I guess was an accident. I remember my mom telling me not to eat that. I had no clue why she was telling me that. I figured, I’m in the hospital being taken care of and I can eat whatever I want. So I went ahead and ate the roll, and was quickly back to vomiting. But there was never any talk of insulin.

Nadia: They knew you were sick and they thought you had diabetes, but they could not give you insulin. They can treat you for something minor but not major, probably because they were concerned about reimbursement, and the situation was complicated by pneumonia.

Sean: Well, because they were treating me with all these antibiotics for the pneumonia, they weren’t sure if my sugars were high because of the drugs, so they weren’t willing to treat it. I spent two weeks in the hospital and lost over 30 pounds. Once they got me stabilized, I was sent out to a clinic in California. My weight had dropped to 119 pounds, and where I used to have muscle, it no longer existed. It was just flab and extra skin. My hair was falling out, too. It was not a pleasant experience.

Nadia: Scary?

Sean: Oh, yeah. I went to California and went through a test called the glucose tolerance test, which they usually give for gestational diabetes. It’s not what you’d use to test someone you think has type 1 because of the syrup concoction the patient has to consume. Within 24 hours, the result came back. A nurse called and said. “Sean, everything came back fine. You don’t have diabetes.”

Nadia: You’re kidding!

Sean: A family friend who was a cardiologist had been following what was going on. He told my family to pick up a copy of the lab results and send it over to him. When we went down to get the results, we noticed that there were flags marked all over them. We asked a nurse walking by to get a doctor, so she goes and grabs one. He comes out and says, “I’m sorry, I’m not sure why you were told that nothing’s wrong. There is something that’s indicated in this blood work. Please come with me back to my office.” So I go back to the office with my father, and the doctor says, “Don’t worry, Mr. Busby, I’ve dealt with plenty of type 2 diabetics before.”

Nadia: Oh, my God! (Laughs)

Sean: Many, many misdiagnoses.

Nadia: It just keeps getting worse! What happened then?

Sean: I was given pills. I think they were metformin and glipizide. I went three months on those pills, but my condition continued to worsen. I was vomiting after every meal. It was now the early summer months, and I didn’t fit in my clothes. I was lying on my parents’ couch wasting away. My sponsors caught on to what was going on and began to drop me from the team because they didn’t want to support an athlete who was chronically sick. That’s when things began to get really rough. I didn’t understand the difference between type 1 and type 2, and I figured, “Okay, the doctor told me to take these pills, so I should feel good.” That didn’t happen at all. I felt miserable.

Finally, I just got so overwhelmed being stuck at home and not being able to train that I tried to gather up whatever strength I had to catch a flight from Orange County, California, to Steamboat Springs, Colorado. I wanted to get my life reorganized. As I was boarding the plane, I nearly passed out. They took me to the hospital at UC Irvine and dropped me off at the diabetes center, where I was correctly diagnosed as having type 1 diabetes. It also happened to be my mother’s birthday, which was three months after I had been diagnosed as a type 2.

Nadia: Did you finally get insulin?

Sean: Oh, that first shot of insulin! I remember sitting in that clinic with a doctor, and that first shot of insulin was the most amazing experience I had ever felt. I could feel life coming right back into me. I felt instant nutrition. It was an overwhelming, unbelievable feeling.

Nadia: Once you knew that you had type 1 diabetes, how did your thinking change?

Sean: I definitely wanted to be on the team because now I had the tools I needed to get back on track. They told me what I needed to do, which included going online and researching about the disease. That’s when I came across the JDRF [Juvenile Diabetes Research Foundation] website and learned about an event called the Children’s Congress, which focused on very young children with type 1. So shortly after a time when I had been looking at giving up, I was reading about five-year-old and nine-year-old kids who didn’t know what it was like to have a life without this disease. Here I was, 19, and I’d traveled the world with snowboarding.

It was extremely inspiring. I read the story of a seven-year-old whose father would come over and test his blood sugar in the middle of the night while he was staying at a friend’s house. My parents never had to do that for me, and I never had to have my blood sugar tested in the middle of the night. I read another story about an older boy and was thankful that I’d never gone on a first date and had to tell the girl why I had to give myself a shot of insulin. It was inspiring to see that these kids and young adults were living with the disease and trying to live their lives as normally as possible. That’s when I knew that if a five-year-old could do it, so could I.

So that’s what kicked my butt back into gear. I stuck around California for a couple of months so I could be close to my medical care. I really needed to understand how my body was working. I started going to the gym daily right after I was diagnosed, first thing in the morning. At first I was embarrassed because I was so underweight, so I’d go when no one was there and do all sorts ofexercises that I don’t usually do, just to learn about how my body interacted with exercise. I was constantly checking my blood sugars and writing them down in my log book.

My goal was to get back on the pro tour, competing at high level events. Four months after my diagnosis, I did just that. I showed up at a grand prix competition in Colorado, and none of my teammates recognized me because I was still really underweight. But once I was out there and they knew it was me, I had a overwhelming sense of support from everyone.

Nadia: What kind of adjustments did you have to make for competitions?

Sean: I learned to show up a couple of days before a competition to learn what my sugars would be doing at that site’s particular altitude, climate, and humidity. I’d check my blood sugar every hour and log how I slept. I’d do this so that the night before my event, I could be all dialed in and not have to check my sugars as much. The idea was to create normalcy for that environment. With my OmniPod® Insulin Management System, I have even better management and control. One of the advantages with tubeless pump therapy verses traditional is that I don’t have to worry about my insulin freezing in any tubing.

Nadia: Tell me about “Riding on Insulin.” When did you come up with the idea?

Sean: I had been reading stories about kids with diabetes who inspired me with their determination to live life as fully as possible. I wondered what could I do to give back to them since they had given me so much hope. That’s when “Riding on Insulin” jumped into my head. I didn’t call it that at the time, but I was thinking that since my passion was snowboarding, if I learned all I could about diabetes, I could offer snowboard camps to diabetic kids and young adults. They could snowboard in a place where everybody knew about the disease and how to work with it. It was a way to give back. That’s how “Riding on Insulin” was born. I was diagnosed in 2004, and I held my first camp not too long after that.

Nadia: What age groups participate in “Riding on Insulin”?

Sean: We offer a teen camp for 12- to 17-year-olds and a family camp for children ages six to 17. Siblings, diabetic or not, can come to the family camps, and kids who attend the teen camp can bring along a friend. The camps allow kids with diabetes to enjoy themselves in a safe, accepting environment, while giving nondiabetic friends and siblings a chance to learn about the disease. Parents and guardians can network with other parents and guardians and create mutual support groups for anything from babysitting to people they can reach out to when they hit a rough patch. Kids with diabetes have a sense of normalcy at the camps because the other kids around them either have diabetes or know about it and the challenges that come with it.

Nadia: How do you accommodate all the needs of a group of young people with diabetes? And does cold weather influence the advice that you give the campers?

Sean: We have a banquet the first night where we discuss issues with the nurses and doctors who volunteer time at the camp. All of them are experienced at managing diabetes in children, so what we talk about is the purpose of the camp. Each child is there to learn how to ski and snowboard and get a sense of freedom from the confines of the disease. We want them to be kids first and diabetics second, even though we want them to learn how to manage the disease so that they can do the things we’re teaching them.

So, we do expect each kid to test before getting on a lift, and we give tips about how to keep their meters, pumps, or other equipment warm and functioning. We also bring in extra supplies because you need to be prepared at all times with this disease for something unexpected, like having your test strips pop open in your jacket and get all mixed up with old test strips. We set up a base camp where we have a lot of extra supplies. We always assign a medical person to each group that’s out on the hill.

Nadia: How long is a camp session?

Sean: Usually, one day. I have run longer camps, up to three days, if we can line them up with holiday
.

Nadia: Is any sort of scholarship available for families who can’t afford the camp?

Sean: Occasionally we’re able to offer a scholarship. We never like to say no to anyone. We do everything we can to try and get kids out to our camp if they can’t afford it. We try to find a way. When my fiancée and I married recently, instead of giving out little gifts to guests, we gave them a booklet that told the story of a kid with diabetes in Oklahoma who has wanted to come to the camp for years now, but his family couldn’t afford it. We took the money for gifts and gave it to his family so that they could come to “Riding on Insulin.”

Nadia: If people want to donate money to your fund, what should they do? 

Sean: Go to www.ridingoninsulin.org. We get a lot of our scholarship money from the private donations that individuals make there.

Nadia: Thank you, Sean.