I was featured in today's Austin American Statesman article "Figure competitor says fitness helps manage her Type 1 diabetes", by Pamela LeBlanc.

I'm hoping to continue to educate, advocate and spread awareness regarding diabetes and proper management living a healthy lifestyle

Here is the link to the online article "Figure competitor says fitness helps manage her Type 1 diabetes", by Pamela LeBlanc.

Here is the link to the online article "Figure competitor says fitness helps manage her Type 1 diabetes", by Pamela LeBlanc.

I met with celebrity chef Charles Mattocks to make a 3rd video for you.  I think you'll agree that it has an inspiring message.  Hear what this award winning directory and filmmaker of the documentary "Trial By Fire" has to say about managing your diabetes.  

"You have to educate yourself, you have to be your own advocate, take this seriously, put yourself first and do what you need to do to live the best life...."  

That will give you a taste, so click on the image below to watch the video!

I recently met Sage Donnelly while she was training in San Marcos,Tx 45 minutes south of Austin,Tx just before she was to make the 3 day trek with her mom back home to Carson City Nevada, in a comfy van which is their home away from home.  This is the first of a 2 part video interview, where we discuss topics ranging from how she manages her diabetes when training and competing to the 2020 Olympics, to her favorite shopping in Texas!  Find out what makes this up and coming world class athlete tick, and how she manages her diabetes while competing at the highest level.  I hope you enjoy the interview as much as I enjoyed talking with Sage!

Sage Donnelly( image from www.SageDonnelly.com )

Here is a bio of Sage, from her website www.SageDonnelly.com

Named Canoe and Kayak Magazine's 2014 Female Paddler of the Year and is currently the World Freestyle Jr. Women's Champion, the US 2014 C1 Women's National Slalom Champion and 3rd in Women's K1 Slalom, at 15, Sage Donnelly is a rising star in the world of whitewater kayaking, mastering the diverse skills necessary for both freestyle and slalom kayaking. But it hasn't always been easy.

Sage was diagnosed with Type 1 diabetes when she was 3 years old. She developed it at the same age as her Grandfather who passed away from complications from the disease.  She took her diagnosis like a trooper, but it was still hard to adjust to a minimum of 4 shots a day, 20 finger pricks a day, and regimented eating schedules. Within 6 months of her diagnosis, she received her first pump, an Animas IR 1200, and we watched her blood sugars become more stabilized and under control. We enjoyed the freedom of control the pump offered as well as only giving her 1 shot every 3 days for a new catheter site for insulin delivery.

Sage has not let her diabetes control her life. She skied her first double diamond ski run at age 5, (the Wall at Kirkwood Mountain Ski Resort in California) and has been an avid rock climber since she was 3, counting Yosemite's Munjenella as one of her favorite routes, but kayaking remains her favorite sport. She started out at the age of 3 in an old Topo-duo with her Dad in the rear cockpit, and her Mom leading them down numerous class 2 and 3 rapids. When she was 5, she took off in her own boat and was doing well in class 2. When she was 7, she learned to roll her kayak and has been unstoppable ever since. She loves running rivers and side surfing holes as well as competing in rodeos, slalom races and down river races.

In June of 2007, while competing in the FibArk river festival in Salida, Co, Sage was thrilled to be asked to join the Jackson Kayak Regional Team and is now on the Jackson Factory Whitewater Factory Team. 

Alissa is wrapping up 2015 with an interview of 4-time Olympian Skier and T1D Kris Freeman.  From Campton NH, born 10/14/1980, Kris Freeman’s accomplishments include the Under 23 World Champion, 17 X National Champion, and Lilly Diabetes Camp Care Ambassador.  Kris is a Dexcom Warrior and Omnipod user since 2008.  You can keep up with Kris at his site, www.krisfreeman.net

Alissa: Your interest in skiing came at a very early age. Your parents both skied, can you tell me a little about your parents, and how they first got into skiing?

Kris Freeman: My Dad was a pig farmer from Iowa. My mom grew up in a suburb of Chicago. They started skiing in their mid-20s when they moved to New Hampshire.

Alissa: What was it that you loved about watching your parent’s cross-country skiing? What made you pursue this as an athletic sport over other types of professional sports?

Kris Freeman: In my town, there is a private high school that has its own ski jumping facility, cross-country ski trails and downhill mountain. The school opens their facility to residents, offering free coaching. I took full advantage of the facility since I was 5 years old.

Alissa: You're an Olympic and national champion cross-country skier, can you tell me a little about your professional skiing career?

Kris Freeman: At 19, I was titled the youngest national champion. Since then, I've won 16 additional national championships. I competed in the last four Olympics and earned 4^th place in the World Champions twice.

Alissa: What age were you when you were diagnosed?

Kris Freeman: I was diagnosed at 19 after taking a routine fasting glucose tested required by the U.S. Ski Team. My glucose came back 240. I was immediately sent to an endocrinologist who diagnosed me within five minutes.

Alissa: How did you handle your type 1 diabetes (T1D) diagnosis emotionally?

Kris Freeman: Although the doctor was kind and supportive, he advised against competing at an Olympic level. I sought a second opinion, but to no avail – the next doctor concurred. Appreciating that I have been working toward my Olympic goal since I was five years old, I became depressed. I continued to research for another doctor, finding one who was willing to work with me to assure that I could continue competition.

Alissa: Were there any signs of symptoms that you missed prior to diagnosis?

Kris Freeman: Absolutely – my vision was blurry coupled with lightheadedness, plus I was going to the bathroom a lot. The signs, however, were easy to miss because I had just moved out to Park City, Utah, which is at 7,000 feet. Training for the Olympics included four hour mountain runs and 30-mile roller skis. It was easy to excuse the symptom as general exhaustion.

Alissa: How did your endocrinologist help support and manage your training schedule? Did you ever become discouraged?

Kris Freeman: It was through trial and error. The doctor expressed confidence that there were solutions but we had to work together to come up with different insulin protocols as well as ways to keep my glucose monitors warm. While there were certainly discouraging moments, I never stopped aspiring to make that Olympic team.

Alissa: Who did you first tell about your diagnosis? Did you fear that this might end your career?

Kris Freeman: Remember, the first two doctors advised that diabetes might end my career so it was of concern. I immediately called my parents, high school coach and closest friends – all of whom were very supportive. Unfortunately, my support network was at a distance because I was living in Utah. I had to rely on the telephone and email.

Alissa: Describe your Olympic training.

Kris Freeman: In total, I would train about 800 hours a year with the longest days equaling five hours of training per day, and the shortest could be up to one hour per day.  Ironically, the majority of training occurred during off-peak competition season. A typical training day began with a 20-mile run in the morning followed by an hour long down pole on roller skis, concluding with a weight room session.

Alissa: How were you able to make adjustments to find the right diabetic regimen?

Kris Freeman: On race days I noticed that my glucose would rise for no apparent reason.  I researched why this was happening and learned that the stress hormones cortisol and adrenaline have strong effects on glucose metabolism.  Cortisol makes the body less sensitive to insulin and adrenaline triggers a release of stored glucose from the liver.  I started doing yoga and basic meditation techniques before races to keep my stress response to a minimum in the lead up to races.  Whenever I notice a pattern in my glucose management that I can't explain,  I research the root causes of it so that I can come up with a plan to control it.

Alissa: Are you currently on an insulin pump and a Dexcom CGM?

Kris Freeman: Yes, I used the typical Humalog and Lantus injections from the year 2000 through 2007. My endocrinologist and I were initially hesitant to go a pump because we were concerned about freezing. There are temperature controls in cross-country ski racing, but the race can start at -4 Fahrenheit. As a result, I would take up to 12 shots a day to maintain my glucose level. Then in 2008, I went on the Omnipod system, which has a pump that rests on my skin – utilizing my body heat to keep it warm.  I started using Dexcom in 2010.

Alissa: How has using Dexcom helped you?

Kris Freeman: I have a better understanding of what is going on within my body thanks to a reading it provides every five minutes. I can easily monitor myself in the middle of a run as opposed to having to stop and use a blood stick.

Alissa: Does type 1 diabetes run in your family?

Kris Freeman: Type 1 does not run in my family.

Alissa: Tell me about your Olympic journey and the impact diabetes had on it.

Kris Freeman: Diabetes has not affected training or racing. What has changed is my preparation, which includes organizing all of my medical equipment. I can be on the road for five months so I must account for how many pods and glucose test strips I will need. Do I have enough hand warmer packs with me? I also need to start thinking about my eating habits prior to a race. In order to maintain my insulin and diet regimen, I have to assure that I eat breakfast three and half hours prior to the race. So if a race begins at 8 a.m., I wake up at 4:30 a.m.

Alissa: Did you develop your diet plan or do you see a nutritionist?

Kris Freeman: I do not see a nutritionist. When I am not training my diet is high in protein. If my day is going to have a lot of physical activity then I replace the protein with carbohydrates.

Alissa: Are you in close contact with your endocrinologist, do you mostly self-manage?

Kris Freeman: At this point, I mostly self-manage.

Alissa: I have a daughter who is a type 1 diabetic, and she had the honor of hearing you speak at a diabetic camp she recently attended. What kind of message would you like to share as a role model to other type 1 diabetics?  

Kris Freeman: I've been visiting summer camps for kids with diabetes since 2004 on behalf of Lilly Diabetes Camp-Care Program. I realized that I could make the greatest impact on inspiring kids. I am so happy that I have seen a lot of change over the years. Twelve years ago, when I told kids about the two doctors who advised that I couldn’t go to the Olympics, they all nod – like "Yeah, we all heard that too." Today, whenever I tell that story – there is shock in the room. Kids would actually say, "A doctor would actually tell you, you couldn't do something?" I meet kids who are playing sports and aren't scared to get off the couch. I continue to stress to the kids that diabetes doesn’t have to be an obstacle in your life, but it will if you let it.

Alissa: What is a moment from the camps are you most proud of?

Kris Freeman: Probably more private moments. It is the kid who is maybe too shy to speak up in a group but will come to up to me afterwards, confiding that he or she went out for a team because I inspired him or her. It is the best feeling when I know that I actually made a difference.  

Alissa: What are your future career and Olympic goals?

Kris Freeman: Unfortunately I am getting older, and I am reaching the age where skiers do start to retire. Although my last race will be at the next Olympics, I will continue participating in sports. I enjoy triathlons as a hobby, and I would love to compete in the Kona Ironman.  

Alissa: You mentioned Lilly Diabetes. What kind of relationship do you have with some of your sponsors and how do they support you?

Kris Freeman: Cross-country skiing and competing through Europe is expensive.  Lilly has helped me get the equipment I need, which is not really uncommon. All skiers have personal sponsors, mine just happens to be in the diabetes world.

Alissa: How do you plan on spending your holidays?

Kris Freeman: My fiancé and I are going to my parent's house, joined by my brother, his wife and their daughters. The visit will be short though. I am only home for one week and then I am heading out to Houghton, Michigan for the U.S. National Championship.

Alissa: When do you compete for the Olympics tryout?

Kris Freeman: The next Olympics will be in South Korea in 2018. The World Championship will be in Lahti, Finland in 2017.

Alissa: I wish you the best of luck and have a wonderful, happy holiday, happy New Year. Thank you very much Kris for your time. 

Nicole Johnson, DrPH, MPH, MA  has worked professionally in diabetes for over 17 years and has lived with Type 1 diabetes since 1993. She is most well known for her time as Miss America 1999. In recent years, Nicole has gained a reputation for her engagement in diabetes research focused on quality of life, psychosocial issues, and family dynamics in diabetes.  At the University of South Florida, Nicole serves as the Executive Director of Bringing Science Home, a $6 million diabetes research program that focuses on those very topics. 

Nicole is also the Chairman of the Diabetes Empowerment Foundation, an organization focused on adults with Type 1 diabetes. Examples of the foundation’s work include the programs Nicole created Students With Diabetes, Young Adults With Diabetes and Diabetes Partners.

Over the years, Nicole has served on many diabetes advisory boards including the JDRF International Board, the American Diabetes Association National Board, the Florida Governor’s Diabetes Advisory Council and the National Institutes of Health Council of Public Representatives. Since 1999, Nicole has helped raise more than $27 million for diabetes research and programs

In her journalism career, Nicole won a Telly Award for her work on dLife.  Her love of communication lead her to be a columnist for numerous diabetes magazines over the years, as well as the author of 7 books related to diabetes.  Her most recent book is Young Adult Type 1 Diabetes Realities.

Alissa:        When did you start competing in pageants and what kind of training did it require?

Nicole:         When I was younger my parents entered me into a pageant with the hopes of breaking me out of my shyness shell. After my first one as a pre-teen, I didn’t enter another until my senior year in high school. It was then that I entered the Miss America program because it offered scholarship opportunities. (She didn’t win that first year.)

Alissa:        Can you tell me a little bit about your early years leading up to your type 1 diabetes?

Nicole:         I was a typical kid who loved to play outside, riding my bike. I wasn’t particularly athletic but I did run track. Because I was so tall I did well at hurdles and high jump. I loved music and was always active in my church, which was a big cornerstone for me.

Alissa:        So many people are misdiagnosed and one of the reasons I really appreciate you speaking to me today is because this is what I often hear of misdiagnoses. How were you diagnosed? What were your signs and symptoms? I believe you were originally misdiagnosed. Am I correct?

Nicole:         I was 19 and in college when I was diagnosed. I was sick for a really long time and I'm sure my blood sugar was high for a while as well.  I was misdiagnosed several times. I had lost so much weight from being sick that I was initially sent to see a psychologist because many people thought I had an eating disorder. Then, I was treated for various strains of the flu. Finally, I was correctly diagnosed as I was being prepped for surgery to remove my appendix – which they were taking because that too was suspected as the cause of my illness. 

Alissa:        You had an appendix surgery without it being appendicitis?

Nicole:         Almost. They didn't take it out because they realized my glucose levels were so high. The surgery was cancelled because I didn’t have appendicitis.  I was misdiagnosed because I had immense abdominal pain with flu like symptoms. Finally someone put it all together, the weight loss plus vomiting and constant thirst, I had Type 1 diabetes.  I am the only person in my family with T1D.

Alissa:        How did you handle your type 1 diabetes emotionally and who was your support system?

Nicole:         Because I was a young adult, it was an awkward time. I was in that process of separating from my parents and establishing my independence. My family was very supportive of me but in a very different way than when people are diagnosed when they're a teen or maybe later into adulthood.

Alissa:        Were you depressed at all from it or did it change your emotions?

Nicole:         I was sent into a downward spiral emotionally. The healthcare professionals were advising that I needed to do this on my own but no one realizes that when you are diagnosed with a disease you automatically feel isolated and depressed. When I was diagnosed, I was immediately given a list of all the things I couldn’t do. Everything seemed so negative.  I followed the advice I received.  I quit school, shelved all my dreams and tried to create a new way of living.  It [the advice] was so extreme.  I was told to NEVER enter in a competition like the Miss America program because I wouldn’t be able to handle the stress and that having children was no longer a reality for me because of my diabetes.

Miss America 1999, Nicole Johnson with her daughter

Alissa:        How long do you say emotionally it took you before you felt like you were in a good place again?

Nicole:         Probably a year or two.  After a few months I started trying to live again, but the process of dealing with the grief and shock took me a while.

Alissa:        When did you start preparing to compete for Miss America after your initial diagnosis?

Nicole:         About six months after being diagnosed, I decided that I needed to start trying things. The Miss America program was the impetus for me being able to have a positive outlook. It gave me a goal, a sense of purpose. It didn't matter if I won or if I lost. (And I lost a lot of times.) Getting on a stage with a disease was the push I needed to turn my life around.

Alissa:        How did you find a doctor and a medical team to help support you?

Nicole:         The old fashioned way – looking in the phone book and talking to friends was how I finally found someone that was right for me.  

Alissa:        Was it hard to maintain well regulated blood sugars, especially when you were competing with the restricted diet?

Nicole:         Yes, it was incredibly hard. This was more than 20 years ago. Continuous Glucose Monitoring (CGM) sensors weren’t available nor were Insulin pumps common. The first five years I gave myself injections. Thankfully, I never fell into any traps of dia-bulimia or anorexia but, I did become a really diligent high cardio exerciser when I was preparing for Miss America.

Alissa:        What was your diet like and did you see a nutritionist?

Nicole:         No, I didn't see a nutritionist.  My diet was very basic. Including a lot of steamed vegetables and some chicken. For breakfast, I would eat Fiber One. Lunch would be some kind of salad or protein and dinner was steamed vegetables and chicken.

Alissa:        Did the stress of competing impact on your blood sugars?

Nicole:         Yes it did. Being able to compete for five years before the Miss America program allowed me to learn a lot about mind control. I would intentionally decelerate my emotions and try not to be excited or anxious about things. I would go through mental exercises to keep myself calm. When a person gets excited, the adrenaline can hit the blood sugar really fast.  I would do a lot of techniques similar to yoga to help control my breathing.

Alissa:        You were very well known as the first Miss America who competed with diabetes and an insulin pump. I'm curious to know what made you decide to wear an insulin pump on stage and how did you feel?

Nicole:         The year before Miss America I was competing at the state level when I was found unconscious due to low blood sugar. That was my wake up call. I decided from that moment on to not hide anything about my diabetes. One week later I was on the pump and vowed to not only wear it but use every tool available to maintain my blood sugar.

Alissa:        What kind of impact do you feel it had on the general public and the diabetic community or non-diabetic community? By any chance, do you feel that, to some extent, a pump created a possibility of you accelerating your win?

Nicole:         I wore the pump underneath my clothing. I didn't necessarily advertise that I was wearing it, but I did tell the judges that I wear the pump to stay alive.  I literally said during the interview “If you have a problem with the fact that I wear a medical device, don't pick me because I'm never going to hide it. It's under my jacket. It's clipped to my waistband. It is my lifeline."

I don’t think the pump secured my win, but I do think my win had a bit to do with the way I was fueled with passion to speak out about diabetes.   It was infectious and unusual at that time.

Alissa:        Are you currently still on an insulin pump?

Nicole:         Yes, have been now for almost 20 years.

Alissa:        Are you currently on a Continuous Glucose Monitoring System (CGM)?

Nicole:         Yes, I wear a Dexcom. Have been wearing it since the first one came out!

Alissa:        Since you're on a CGM, what advice would you give and why do you feel it's important, especially as an athlete or a competitor?

Nicole:         My advice is to wear one if you can. The reason I say “if you can” is that I recognize athletes may have challenges in physically keeping the device on. I get a severe skin reaction to my CGM, but I still wear it. It is my peace of mind and assurance that I can accurately control my blood sugar. I also recommend that people engage in the online community to seek guidance on everyday issues that we all experience – whether you are an athlete or not.

Alissa:        What do you think you've benefited the most from wearing a Dexcom?

Nicole:         There is great value in being able to monitor your blood sugar because it helps influence behavior. For example, I will know if my blood sugar spiked because of what I ate or not. There is an immediate connection between the cause and effect in my behavior. It's a great non-verbal, non-judgmental tool that guides me.

Alissa:        Tell me about your higher education as well as your career highlights.

Nicole:         I have a master’s degrees and a doctorate in public health. Currently, I run a research program that focuses on how those who have diabetes quantify their quality of life. Their feedback helps us develop programs, interventions and solutions all geared toward improving daily living. But … the greatest thing about it all is being a parent and sharing all of this with my child. My daughter sees the importance of science. In fact, this week she and I gave blood to help with diabetes research studies.

Alissa:        How does your daughter handle your title and success and is she interested in competing in pageants?

Nicole:         She's very funny about it, using it to her advantage when it's convenient. If she wants to show off in front of the class, then mom needs to bring the crown in. And I guess like every little girl, she wants to be like her mom so she talks about being in pageants when she is older. I explain that achieving the job of Miss America is a lot of hard work, but if she wants to do it then I am behind her. She really needs to live her own life, following whatever makes her excited and happy – which is why we do not participate in kid pageants. She does speech competition and piano recitals – that is what I feel is appropriate for her right now. You will never find us at a child pageant.

 Alissa:       What kind of message do you want to share as a role model to other type 1 diabetics and together, how can we make a positive impact on others?

Nicole:         We need to be inspirational, teaching the younger generation that diabetes is not a stumbling block. They need to go forward and chase their dreams. We need to be mentors.

Alissa:        Can you tell me a little bit more about the science of your company that you work for?

Nicole:         I initiated a program called “Students with Diabetes,” which focuses on young people ages 18-35. This is the time of your life when everything is ‘new’ whether it is college or first job. I remember what it was like to be a young adult diagnosed with diabetes. I was in a dark hole of depression, feeling so lonely and helpless. This program addresses all of those vulnerabilities and isolation associated with being diagnosed at a young age.  

Alissa:        What charitable organization do you support and how can people contribute? Is there an online website?

Nicole:         The programs that I've created have moved into a foundation, which is called the Diabetes Empowerment Foundation and the website is diabetesempowerment.org. It's everything from the students that I talked about to programs for partners of people who have type 1. In 2016, we will be rolling out a program with an emphasis on moms who have diabetes.  We'd love any support from dollars to volunteerism.

Alissa:        Thank you very much.  You were so informative and I know how busy you are and I really appreciate all of your time. Together, I hope we can make a difference!

Nicole:         Wonderful. I hope so too!  Thank you.

This is the second and final part of a 2 part interview of Professional Snowboarder and T1D Sean Busby.  Click here to read the first part Professional snowboarder Sean Busby accomplishes his dreams as a Type 1 diabetic (T1D)

Riding On Insulin founder, Sean Busby, is a professional backcountry snowboarder with type 1 diabetes who travels the world exploring remote corners of the globe on snowboarding expeditions.

In 2004, while training for the 2010 Olympics, Sean endured a complicated diagnosis of type 1 diabetes. Considering leaving snowboarding all together, Sean was inspired by reading stories he found through JDRF’s Children’s Congress. It was the stories of 5- 7- and 13-year-olds that inspired him to keep living his dreams despite living with diabetes. He founded Riding On Insulin—which is now a nonprofit organization—to honor all the kids who inspired him to keep living. Today, Sean’s wife Mollie runs Riding On Insulin and Sean makes appearances at the organization’s global action sports programs (including ski/snowboard camps) for kids, teens and adults living with T1D, while managing his personal backcountry snowboarding career. In February 2014, Sean became the first person with T1D to backcountry snowboard all seven continents. His expeditions include trips to Morocco, Antarctica (twice!), Patagonia, Iceland, Norway, Japan, Kyrgyzstan, Alaska, Tasmania, and more. Sean graduated from the University of Utah with a degree in Health Promotion and Education, with an emphasis on diabetes.

Sean and his wife, Mollie live just outside Whitefish, Montana in a yurt with their two dogs, Daisy and Glacier.

Sean Busy (photo courtesy Sean Busby Facebook page)

Alissa:      I’d like to talk about your latest diagnosis. When were you diagnosed with Lupus and how are you managing it? 

Sean:        When I was going through that whole complicated diagnosis in Colorado at the age of 19, there were different blood abnormalities. All of the different specialists viewed me as an enigma that they were trying to figure it out.  I was sent to the Mayo Clinic in Rochester, Minnesota where I was tested for every autoimmune anomaly in the book.

Flash forward to August of this year, when I finally got diagnosed with Lupus. One in ten people that have lupus are men, which means it affects about 500,000 males in the world. So, it is actually very rare for a man to be diagnosed.

Alissa:      What were your recent symptoms that led to it?

Sean:        Most recently, I had gotten back from the Arctic Circle in Norway where there’s 24 hours of sunlight. I had suffered from debilitating headaches, which I had never had before.  A doctor detected really high multiple enzymes in my blood. I was immediately referred to a neurologist, who thought I might have some sort of muscular dystrophy. Tests now found a specific antibody that came back four times the normal value – which is only seen in a person who has Lupus. Looking back at everything, it all makes sense.

As a result, I’m on a heavy dose of anti-malarial medication to protect my body’s organs. I’m also on a bunch of different supplements. If the disease attacks my liver and kidneys again, I could have to be treated with chemotherapy and prednisone (steroids). My latest check up revealed that the Lupus is heading toward a “a remission like state” though remission doesn’t occur in Lupus. I know that a flare up can be caused by over-doing exercise. I am also photosensitive – basically allergic to the sun. Knowing that the sun goes down around 11 p.m. and rises before 4 a.m. in Northwest Montana during the summer, I have to really protect myself. Winter, it is always dark, so that is great.

Alissa:               What is a flare up like? Is there pain, side effects?

Sean:        The pain is excruciating. The headaches are debilitating. My body can’t move because everything hurts. I start running fevers and get very ill, depending on what organ it’s attacking.  If it happens to attack my skin, then that is visual because of the rash which is coupled with joint pain. I’m having to really, really tune into my body, but having Type 1 Diabetes, tuning in is something I’m accustomed to.

Alissa:      How does it affect your blood sugar?  

Sean:        It definitely affects my blood sugar. When you get sick with Type 1, your blood sugars start rising. But, right now my rheumatologist and I see Lupus as the big gorilla—not T1. My doctors monitor my health as a team. Right now, I am searching for psychological support. There is a men’s hotline that I call into. It has helped. I realize that there are some who are afflicted with really severe symptoms. Whatever my situation may be, there is someone who is suffering a lot worse. You have to accept that “it is what it is” and stop being consumed with the worst case scenario. If you don’t then you won’t get to live the life that you want to live.

Alissa:      Currently, emotionally and physically, are you handling it fairly well or do you still have your struggles?

Sean:        I still have my struggles.  I’m trying to get ready for winter. This summer was a wash for me. I didn’t go to New Zealand because I started treatment. I was also really weak from lack of exercise. I was able to snowboard the other day for the first time in a long time and it was an amazing feeling. Just being connected to that snowboard again was … I was almost ready to cry.

Alissa:      Do you climb with people so that you have that emergency support too or do you like to go alone?

Sean:        I like to climb with people so I’m sure to have emergency support at all times. This diagnosis is so new to me that I need to have others around. Eventually, I’ll get back to doing some stuff solo—as long as it’s in areas that are avalanche free.  If I’m in avalanche terrain, I have to always have a partner.

Alissa:      What advice would you give for people who are living with Type 1 Diabetes and aspiring to be athletes like yourself?  

Sean:        Be proactive.  Find out what is available to you.   Get involved. Talk to others that have this.  Try to connect with a local organization because they can really provide you with inspirational people to share advice with.  On top of that, if you want to be active with T1D, check your blood sugar.  Check and learn what your body does in activity.  That’s the solid piece of advice that I did that I learned.  It’s just knowing what my blood sugars are doing, I really learn how my body interacts with exercise.  Its check, check, check and check some more.  

Alissa:      Thank you so much, Sean. You’ve given me so much valuable time and I really appreciate you and all that you do and together, I hope that we can help make a difference because you certainly have to me and I can’t thank you enough.  You’re really, truly, a very special person and if you don’t know it, I’m hoping that somebody will tell you so or you could see so because it really is wonderful what you do.  Thanks so much and I appreciate it.

Sean:    No problem — thanks for the interview.

Riding On Insulin founder, Sean Busby, is a professional backcountry snowboarder with type 1 diabetes who travels the world exploring remote corners of the globe on snowboarding expeditions.

In 2004, while training for the 2010 Olympics, Sean endured a complicated diagnosis of type 1 diabetes. Considering leaving snowboarding all together, Sean was inspired by reading stories he found through JDRF’s Children’s Congress. It was the stories of 5- 7- and 13-year-olds that inspired him to keep living his dreams despite living with diabetes. He founded Riding On Insulin—which is now a nonprofit organization—to honor all the kids who inspired him to keep living. Today, Sean’s wife Mollie runs Riding On Insulin and Sean makes appearances at the organization’s global action sports programs (including ski/snowboard camps) for kids, teens and adults living with T1D, while managing his personal backcountry snowboarding career. In February 2014, Sean became the first person with T1D to backcountry snowboard all seven continents. His expeditions include trips to Morocco, Antarctica (twice!), Patagonia, Iceland, Norway, Japan, Kyrgyzstan, Alaska, Tasmania, and more. Sean graduated from the University of Utah with a degree in Health Promotion and Education, with an emphasis on diabetes.

Sean and his wife, Mollie live just outside Whitefish, Montana in a yurt with their two dogs, Daisy and Glacier.

Sean in Norway

Alissa:     How old were you when you started snowboarding and how did you know that this would be your profession?

Sean:        I started snowboarding when I was 12 years old.  Growing up in Southern California, beach sports should have been my thing. But for some reason, I was attracted to the mountains. A friend introduced me to the sport and I instantly loved it, even though the mountains were more than two hours away from my home. After a lot of pleading, my father would let me leave school early so I could practice in the mountains, and I would train until 10 p.m., squeezing in homework during the long drive home, and finally going to sleep after midnight.

By age of 14, my dad challenged me to compete. I excelled in the competition scene and began to pick up my first sponsors. Two years later, I was given the opportunity to go professional with snowboard racing.  I relocated to Whistler, British Columbia to train, compete and ride professionally. I then relocated to Steamboat Springs, Colorado after I graduated high school to train further. It was there that I was diagnosed with T1D.

Alissa:      Tell me about your career leading up to the diagnosis of T1D?

Sean:        My discipline was on the racing side of the sport, with a focus on the 2010 Olympics. I trained with prestigious athletes, which included members from the US team. Up until that moment, I had been healthy for my entire life. And then during the 2003-2004 winter seasons, I noticed on and off symptoms of a mystery illness.  I figured I caught some weird bug from my teammates that were returning back from Europe.

After the U.S. National Championships in Breckenridge, Colorado, I became violently ill.  I couldn’t stop vomiting. I was scheduled to fly to Quebec the next day for the Canadian National Championships. Luckily, I woke up feeling much better so I just assumed it was a 24-hour bug. I was able to go to Canada and participated in a great competition.

It wasn’t long until the mystery illness hit me again. I was constantly thirsty. I rationalized that the thirst was caused by the start of spring, combined with warm weather and training hard. I would down gallon-size jugs of grape juice, and feel horrible afterward—causing me to miss morning training sessions. The vomiting started again, too. I clocked it – two hours after I ate anything, I would get sick. I actually became afraid to eat.  Finally, I went to the emergency room. The doctors attributed by illness to some bad bug. They gave me anti-nausea medication and sent me home.  By the next day, I was vomiting again and unable to hold any food down.   

I visited the ER seven times within two weeks. Eventually, I was admitted to the hospital. During my 12-day stay, I lost more than 30 pounds and developed pneumonia. I was discharged to my parent’s care and went home to California to be treated by a general practitioner. The doctor ordered a glucose tolerance test, suspecting diabetes. It was shocking when a nurse called 24 hours later telling me the labs came back fine.

Alissa:    They said you were fine?  

Sean:    Yeah. I have no idea why they told me that. A family friend who is a cardiologist questioned it, too. He told me to get a copy of my labs so he could consult with a few colleagues for a second opinion. I asked a nurse for a copy of records, and noticed red flags all over the place. I questioned the labs and the nurse grabbed the doctor, who apologized to me and explained that I had Type 2 Diabetes.

Alissa: So you were misdiagnosed?

Sean:        Yeah. Big time. Being 19 years old, I grew up watching TV shows like “House” and “ER” where the sick person is diagnosed within 30 minutes. I assumed the doctor was right, and had no reason to question the diagnosis. I was advised to check my blood sugar and take pills daily. But, the vomiting started … again. Knowing my blood sugar was still high, I tried adding another pill to my regimen. When that didn’t work, I tried to eat an all protein diet.  Restricting carbohydrates only led to more immense weight loss. I was wasting away. None of my clothes fit.  Laying on my parent’s couch, doing nothing – I had to face the reality as some of my sponsors cut me from the team.

I became so depressed that I was determined to return to Colorado to get back into the gym. It was on that flight back to Colorado where I almost passed out. I was rushed to a teaching hospital, where I was correctly diagnosed with Type 1 Diabetes on July 3^rd — my mom’s birthday.

Alissa:      What I don’t understand is why they couldn’t detect it in a blood sugar finger stick?

Sean:        When I was hospitalized for the 12 days, they did suspect diabetes but I also had pneumonia.  Back then, Type 1 Diabetes was labeled as juvenile diabetes and Type 2 was adult onset. I think it was the theory that Type 1 only occurred in children and Type 2 was in adults. Being 19, maybe I was in a gray area? They did notice that my blood sugars were high and I had ketones in my urine.

Alissa:       You had mentioned that you became depressed. How did you handle your diagnosis emotionally?  How did your family help you through it?

Sean:        It was a struggle. I was so angry at the doctors for misdiagnosing me. My body was shutting down, heading towards death.  I wasn’t getting any nutrition. It wasn’t until the first insulin shot that I noticed an immediate difference. It was the most amazing feeling I’d ever felt in my life.

So I set out to learn everything I could about T1D. I started going to the gym around 4:30 a.m. because I was really embarrassed by how skinny I was. I had lost so much muscle mass.

I was also doing a lot of research, reading story after story about children as young as two years old living with T1D. Those kids inspired me. I wanted to give back to them what they had given to me. Winter sports are my passion and that is where the idea of founding “Riding On Insulin” came from. I wanted to host a ski/snowboard camp for kids & teens with T1D.

Alissa:      After your initial negative experience with doctors, how did you find an endocrinologist? And, what kind of regimen did they put you on?

Sean:        I wound up staying with Dr. Ping Wang, who happens to be the doctor that correctly diagnosed me. He is the chief of endocrinology at UCI Irvine California.  It was Dr. Ping Wang who helped me recognize and overcome the burnout that comes with chronic illness. He taught me how to deal with the emotions of feeling alone and isolated. I also started seeing a dietitian.  

My insurance didn’t allow me to get on a pump immediately – which is OK because I really didn’t want it. I had read this article about a professional football player who had Type 1.  He had talked about being attached to a pump. It was that word ‘attached’ that hit me hard. I started crying. I couldn’t imagine having something attached to me, reminding me every minute of the illness I have.

It wasn’t until I started volunteering at diabetes camps that I realized if all these kids could handle a pump – so could I. If I wanted to take my performance to the next level and start gaining back muscle mass, then I was going to have to try it.  

Alissa:    Which pump did you go on?

Sean:        At first, I was on a traditional tubed pump, but I have since switched over to the OmniPod tubeless system, and it has been the best compliment to my training as an athlete, especially for winter sports.

Alissa:      Do you feel a huge difference or do you sometimes wish you could take a pump break?

Sean:        I pump has helped me immensely. In the beginning, I was constantly traveling to competitions in varying time zones and I opted to take shots. But, if the forecast was wrong then my blood sugar would fluctuate too much, causing severe lows. The pump stopped about 80 percent of the lows, giving me much better control, and lowering my A1C substantially. I could set different basal rates for different sorts of exercises.  I recognized that for each individual living with T1D, it’s all about finding the technology that works for them.

Alissa:      Do you think you’ll ever take a pump break or are you content with it?

Sean:        I used to do that when I was on a tubed pump. I would go on pump vacations. The reason I switched to the OmniPod is because it’s tubeless and can attach directly to my body. With all of my remote snowboarding expeditions around the world, I have to worry about insulin freezing. The Pod is connected to me and my body heat keeps it warm so I can focus on my performance without fear of it freezing up. I don’t have to have anything else hanging on me.  I also just recently within the last two years, started using a Dexcom CGM.

Alissa:      What do you think is the positive impact Dexcom can have on training and competing or even non competing?

Sean:        I say if you’re an athlete, you should get on it. Even if you’re on shots, a CGM can benefit your training. When you check your blood sugar with a meter, that’s like one data point. Then another two hours, you get another data point. A CGM like the Dexcom provides a data point every five minutes, so it really fills in the blanks for me.  I’ve learned so much more about my ideal basal rates at different times of the day and night. It’s just been a game changer.

Alissa:       Do you have a specific diet that you follow? Where do you like to see your blood sugars before and after training in your competitions?

Sean:        I’m a big fan of oatmeal in the morning especially when I’m going out to exercise. It enables me to maintain a nice, stable blood sugar.

Alissa:       Lets go back to your snowboarding career. When did you move away from the competition scene?

Sean:        After the correct diagnosis, I turned my focus to the Olympics. However, I was getting burnt out on snowboarding.  I wasn’t having fun anymore. After I graduated from the University of Utah and was training with the Park City snowboard team, I was invited by some pro riders to join them on a backcountry

I was so excited to be with Ryan Reed at the Texas Motor Speedway, where he was getting ready to race in the XFinity NASCAR series in Fort Worth, Texas. He was kind enough to talk with me about the process of testing his blood sugar, what he eats before a race, how he monitors his blood sugar and what his protocol is.

For National Diabetes Awareness month, please consider donating to Ryan Reed’s DriveToStopDiabetes.

Ryan Reed preparing to race!

From Ryan’s website:

Reed began his first full NASCAR Xfinity Season at the start of 2014.  He finished 9^th in overall standings, with 1 top 5 finish and 14 top 15 finishes.  His season best took place at Daytona International Speedway, where he finished 4^th.  He will start his 2^nd Season in the NASCAR XFinity Series with the No 16 team in 2015

Reed’s racing career began at a young age, capturing the Kid’s Kart Track Championship at the age of four.  The Bakersfield, California native followed that up by becoming the Junior 1 Comer and HPV Karting Track Champion at age eight.

Read the rest of his bio at DriveToStopDiabetes

Alissa:   Can you tell me a little bit about your schedule, diet and what you typically eat before a race?

Ryan:     Like many athletes, you need to develop an eating plan – which is really about consistency and making things simple enough so that it becomes routine. I usually have a turkey sandwich with mustard on whole wheat bread as a pre-race meal. I might change it up here and there, but not too much. It makes my blood sugar more consistent.

Alissa:   Racing can cause a lot of anxiety. Does this stress impact your blood sugar?

Ryan:     Yes, from time to time.

Alissa:   What is your routine checking your blood sugar and how do you self manage?

Ryan:     I check my blood sugar frequently. Even though I’m on Dexcom, I always like to start right around 100. The lowest I want to be is 90. The highest I'd want to be is about 120. I usually end a race right around 200. That seems to be a comfortable zone for me where I feel good the entire race.  (Ryan’s blood sugar pre-race was 107 and post-race 154).

Alissa:   How are you able to monitor and control your blood sugar during a race?

Ryan:     I have Dexcom in the car so I can watch my blood sugar throughout the entire race.  I keep a drink that is high in carbohydrate and sugar nearby in order to prevent or treat low blood sugar. It is important to replenish carbohydrates throughout the race.

Dexcom and high carbohydrate drink in Ryan’s No 16 Ford Mustang

Alissa:   Do you change your insulin to carbohydrate ratio or your 24 hour basal?

Ryan:     I am on long-acting insulin.  Knowing that adrenalin and stress on a race day can be hard, I reduce my insulin across the board. The worst case scenario is having low blood sugar inside the race car. Reducing the insulin is a safeguard that errs on the on the side of caution. Reality is that the race burns so many calories; a person doesn’t need as much insulin.

Alissa:   While you're racing, because it's so hot in the car, what do your blood sugars tend to run? What do they usually run after the race?

Ryan:     Dehydration during a race can result in the loss of up to five pounds due to perfuse sweating. Couple that with adrenaline, my blood sugar does gradually climb.  Since it is cool today, I'll probably end around 160-170. However, it can reach between as high as 200-210 on a hot day.  It really depends on the weather. After the race, my blood sugar drops pretty quickly.

Alissa: How does Dexcom work to your advantage when you're racing? How do you treat your blood sugar using Dexcom as recourse?

Ryan:     Dexcom tracks your blood sugar is at all times, including inside and outside of the race car. It IS the device that allowed me to get back on the track with NASCAR! This is my safety net for informing my crew of my blood sugar levels. I have a target on my fire suit that permits my crew to administer insulin, if I am too high. I also have a drink blend in my car in case it is too low. I try to monitor it the best I can during the race, but I may not check for 40 or 50 laps.

Alissa:   When you started racing again, were you on Dexcom from the start?

Ryan:     Yes, I was on Dexcom the first time I sat back in a race car.

Alissa:   How would it impact you if you were not on Dexcom while racing?

Ryan:     I wouldn’t be allowed to race professionally at my current level.

Alissa:   We're both athletes, and I try to really advocate showing fitness, diabetes and living a healthy lifestyle as a positive, not a negative. What advice would you give to a non-athlete with diabetes?

Ryan:   For me, the biggest thing was being able to find a doctor who works closely with me on managing my diabetes, both inside and outside the race car. You're the one who has to manage your diabetes. You have to take responsibility for it, but your doctor still plays a huge role by managing diabetes around the rigorous schedule of training and how an athlete eats. It can be frustrating. There can be times where you feel like it's defeating almost, but if you keep pushing through and persevere, it's definitely worth it.

Alissa :  This is National Diabetes Awareness Month and you're doing some fabulous things with Lilly Diabetes and the American Diabetes Association on the No 16 Ford Mustang. Do you want to share a little bit about what your charitable organization Drive to Stop Diabetes has done for National Diabetes Awareness Month?

Ryan:     One of the cool things is we have a special paint scheme here in Texas. You'll see a bunch of stars all over our car. The stars represent the entire population of Texas. You'll see red stars mixed in amongst those, and those are the fourteen percent of Texans living with diabetes. We also have a My Diabetes Pit Crew Sweepstakes going on this weekend. People, who sign up and get selected as the Pit Crew Champions, are going to have their names featured on my pit crew's fire suits. Just a really cool way to give back to people in the diabetes community that are living with this disease day in and day out, just gives them a way to be a part of the race team. We hope that they enjoy it.

Alissa:   Thank you so much for this opportunity - I'm excited to be here, especially during National Diabetes Awareness Month. I'm looking forward to seeing you race and do great.

Ryan:     Awesome.

Alissa:   Thanks so much.

Congratulations to Ryan for finishing the race in 15^th place.Ryan is currently 10th in the NASCAR XFINITY series championship standings after one win and 17 top-15 finishes.  His next race is at Phoenix International Raceway(PIR)