Next up in our series of interviews with winners of our 2015 DiabetesMine Patient Voices Scholarship Contest, announced a few weeks ago, is a Colorado woman who's been at this type 1 game for the past half-century.
Her name is Betsy Ray, and she was diagnosed as a toddler. She also has a now-thirty-something daughter who was diagnosed at age 16.
For the contest, Betsy submitted a cool life hack of hooking up a Dexcom G4 receiver to her bike. Today, we're excited to hear more about her evolution as an athlete and advocate in this community (or a Diabetes Activist, as she puts it).
She also riffs on everything from the guilt of being a D-parent to the type 1 vs. type 2 naming issue to being a chocolatier with diabetes, and much more. Don't miss Betsy's many opinions on what the industry and other stakeholders ought to be doing to help PWDs live better!
DM) Betsy, from what we know of you, it seems you've bucked all the odds with diabetes...
BR) Yes, I was diagnosed in 1965 at age 2, suffering complete vascular collapse and ketoacidotic coma which almost took my life. I am a member of the second generation of patients on insulin therapy and have experienced every drug, every technology, and every ideology about diabetes. I was a diabetes athlete when diabetics were being told they would never participate in sports.
I gave birth to a beautiful baby girl at a time when diabetics were being told they would never have children. I have also experienced diabetes as the owner of a chocolate shop, and as the parent of a child diagnosed at age 16. I did not get the 'good genes,' or the 'easy diabetes.' But instead I learned a different way to navigate the condition and maintain a state of vibrant health.
Over the last half-century with the knowledge I have obtained, I am now able to pass on in positive ways to influence diabetes outcomes and attain quality and quantity of life for others who are interested in the short path to diabetes optimal wellness.
So you were an athlete growing up?
At the time of my diagnosis my mom was told that I would live to the age of 26, and that the last 10 years would be fraught with complications. My condition was very brittle so they made an educated guess, I suppose. Little did they know that my dad was on the U.S Ski Team and both my parents were ski instructors as well as avid outdoors people. So I got the job of trying to figure out how to balance food and insulin to exercise ratios at the age of 5 when no doctor was recommending athletics for diabetic patients because of fears about low blood sugar reactions. I spent some time in the beginning at the ER and learned pretty fast how to gain balance.
I also created a mantra, “Ski Day is Free Day,” because I learned that I could eat pretty much anything I wanted if I was engaging in sports. So I became an ice skater, a skier, a hiker, and a dancer… which almost cost me my high school diploma and required night courses that I was glad to engage, because I knew I was taking the high road to health. I am now and have been for two decades, an avid cyclist. Ski day is still free day, but I have added a new Mantra, "Live To Ride… Ride To Live."
And you say your daughter was diagnosed at 16…?
Yes, she will be 34 in November and is doing very well. Her diabetes is manifesting differently than mine, probably due to genetics.
When she was born I was told she would only have a 5% chance of being diagnosed… and when she passed her 5th, 10th, and 13th birthdays with no diabetes (I knew this because we stuck her finger semi regularly), we thought she was in the clear. But in her junior year of high school, she got up in the middle of the night and I knew something was wrong, so I followed her to the bathroom where I caught her on her way to the floor unconscious. I took her to ER where they tested her for strep, mono, and diabetes -- all came back negative.
Nine months later, she came into my room and said “Mom, we need to stick my finger… I think I have diabetes." That was the worst day of my life, because every morning when I looked in the mirror from then on, I saw the death of my daughter in my reflection.
So the experience of being a D-parent was full of guilt for you?
It was different being a parent, and although we had a better understanding of diabetes from the start, it has been challenging because my daughter is different in her expression of the condition so the same rules don’t apply. She wrestled with what I refer to as a "loss of joy" initially and we work to bring that into her life every day. She has struggled emotionally with the incessant neediness of diabetes and what it has done to her body, but I have been able to teach her my own coping skills… the most important being how to reframe situations… so she has real tools rather than anti-depressants when the going is rough.
We also act as supporters for each other, the phone being our best tool for shifting to the side of humor and gentleness with diabetes and ourselves. We recognize that the odds for a cure are still slim and that if we perceive diabetes as the enemy, we are creating self-alienation and discord as we can’t blink it away... so we have learned how to dance with it instead in a fluid, effective way. She is awesome… and she too is teaching others in a meaningful but original way about diabetes and how to dance with it.
What do you do professionally?
I live in Arvada, Colorado, and among other things, I am a Diabetes Optimal Health Nutritionist and the CEO/Founder of my own education and advocacy group called Diabetes Activist.
What exactly is an Optimal Health Nutritionist?
I teach diabetics what the body response is to the drugs they take and the diets they practice, as well as the physiology of diabetes such as deficiency states etc. combined with ways they can mitigate these things to improve quality of life, mortality, and complications expression.
My education is in Psychology and Nutrition, but I have an extensive research background in Physiology (how the body functions) and Food Biochemistry (the body response to consumption) specifically as it pertains to diabetes, but for the general population as well.
Food or consumption is chemistry 101. If we engage the wrong battles we lose... It is why I am here and riding Vail Pass at 10,000 feet (did I tell you I like to go fast?) on top of doubling my prognosis and having a daughter, with all my toes and beautiful vision. It is also why I am outliving all of my diabetes friends and family.
You obviously have a deep passion for the power of proper nutrition...
If you want to understand my driving force, see the movie Lorenzo’s Oil but disregard the yelling as it’s dated. That was a true story based upon a simple nutritional shift that vastly improved the lives of millions of children. The father received an Honorary Doctorate for his research to save his son. Medical doctors were astounded at both his ability to find (just the right combination of fatty acids to combat the son's rare illness) and it’s simplicity. He was a father driven to help his child.
So what's your Diabetes Activist group all about?
I am taking both my knowledge and my experience of 50 years in the trenches to the streets, where it is needed most. I have been there, done it all, and lived to tell the tale. I work at my job to support the ability to give this information for free to those who are interested in more than trying to get a number on a lab result, which in the end does not guarantee freedom from complications, because A1C’s and insulin don’t account for the total diabetes picture.
My goal is to empower diabetics in a way never touched on in diabetes care paradigms by shifting those paradigms, and educating people in a way that allows them to navigate any situation they encounter because they are able to make informed decisions… for the rest of their lives.
The website is a work in progress and contains everything from reading lists to the best providers in Colorado, as well as the history (cited) of diabetes, and a blog, which I am working on because I don’t like the format. It may actually become webinars to teach diabetics about what they can do to change their own outcomes.
I created Diabetes Activist (total double entendre) because I felt there was a large section of diabetes education and options not being discussed with parents and diabetics who needed every tool available that has proven effective in assisting them. I work with individuals, as well as consulting and public speaking, and of course authoring. I also moonlight as a contributor on sites such as Medscape, a peer medical information sharing site, to educate providers about diabetes, as well as lobbying my local government, and am currently working on coverage for supplies through insurance and a campaign to light Colorado blue during the month of November in honor of World Diabetes Day.
Lots of diabetes advocacy! Anything else on the professional front?
I also perform voice work for medical and corporate training, commercials, and public service segments, and was past owner of the award-winning Belvedere Belgian Chocolates, Cherry Creek.
Whoa, did you ever face any criticism related to having diabetes and being a chocolate seller?
I didn’t experience criticism, just surprise and shock, probably because I didn’t look like many people's misinformed idea of a diabetic. But I sure got a lot of confused looks and funny ideas about the illness, which I assisted in correcting.
Actually I made the cover of the Lifestyles Section of the Rocky Mountain News as a diabetic as well as receiving the “Top of The Rocky’s” award for “Best Colorado Candy Shop” in 2004. It was a wild and awesome ride. I was trying to make a statement about taking that which the public perceived was trying to kill me and turning it to my benefit. We as diabetics understand that sugar, while challenging, is not really the enemy per se, but the public doesn’t understand this, and the shop became a profound educational tool. When they found out that all 5’1” and 112 pounds of me was diabetic they looked like deer in the headlights and said “You… a diabetic… own a chocolate shop?” I answered, “I know I’m vertically challenged, but it’s a good business to be in because everyone leaves with a smile!”
It was my opportunity to launch an educational 5 minutes about diabetes and encourage them to learn more and support diabetics, because they opened the door to learning. It was an amazing tool as I always had a line of people at my door and I didn’t need to search them out.
Tell us a little more about the diabetes life hack you submitted?
I received a case for my Dexcom, and every subsequent Dexcom, and they all have a clip on it to attach to a belt. Not only does it open upside-down because it is designed for a belt aspect which most people don’t use, but it requires unfolding to view the device. Poor design to actual use and there have been many complaints. When I went out to the internet to try to get a protective case (I tried several) so I could make it into a mount, the products available were either inadequate or could not be modified. I attempted to work with the Nite-Ize company to develop a mount specific to Dexcom but was not successful. I even considered making one from leather.
I incidentally found a different Nite-Ize brand mount that is intended for an iPhone and because it has a platform base and is a soft gummy rubber bracket and stretches to fit, it works perfectly to securely hold the device while I am cycling, giving me the ability to see results with a touch of the device button -- awesome if you need quick access to trending on a long or complicated ride course. I didn’t design it; I MacGyvered an already existing part for my diabetes use because the right one didn’t exist.
What's been the most encouraging thing you've seen change in the diabetes world since your diagnosis, as far as technology and innovation?
Hands-down it has to be my Dexcom CGM. It allows me to sleep at night for the first time in 50 years.
What is missing as far as diabetes innovation?
I feel we have good devices, although they could be made better and cheaper. But we are missing key factors to diabetes support and health in other areas critical to our success.
Anything in particular that comes to mind?
Yes… where to start? Better insulin, insurance company cooperation, scholarships for career development and continuing education, integrated technology to cure satchel syndrome, better public awareness and education, reclassification of diabetes and rebranding of the illness for clarification, involvement from the corporations that make billions of dollars in profit from diabetics to improve the daily lives of those who suffer... oh and a reality TV show. There’s more but that’s a good start.
By a "reclassification," are you referring to controversial topic of changing the names for type 1 and type 2 diabetes?
Indeed. The definition of Diabetes Mellitus from the ancient Greek is "sweet syphon,” a condition in which the sufferers own tissue muscle and bone melt into urine. This is not type 2 and there needs to be a change to set things right to both diabetics and the public. Type 2 diabetes would be more correctly identified as an environmentally impacted endocrine disorder. As such, it should be resolved and public awareness education instituted to shift public understanding.
The hard part is that research into any diabetes is a benefit to all diabetics. But the stigma that goes along with type 2 diabetes has been a major factor in lack of support from outside entities for a disease that is killing our children before they are fully able to realize their life goals.This change should be publicized in the form of public service announcements and commercials which could certainly be assisted by corporate entities.
I’ve already written a script for a commercial spot but alas… I have no ability to get it produced and aired.
What would you like to see the Pharma industry do in terms of working to make D-lives better?
I would like to see them actually listening to the needs and concerns voiced by diabetics and then acting upon them effectively. For example, as a diabetic I have had to change my careers several times as diabetes has changed my capabilities. While I am protected under the Americans with Disabilities Act from discrimination, there are no training or rehab scholarships available for diabetics other than through small private groups and foundations mostly geared towards young High School grads or athletes… believe it or not.
Or for another example: There is no generic or even good option for the drugs we rely on for survival, because the original first-line natural insulin that cost $25 dollars a bottle is gone... due to the ability to manufacture synthetic toxin-laden products at a much cheaper cost and market them for exorbitant prices.
Also, we have no diabetes-specific resource centers or hospitals that actually know how to work with our challenges as whole persons rather than compartmentalized conditions farmed out to multiple practitioners. Most of our insurance doesn’t cover our supplies, or does so in a grossly inadequate way. And we have HIPPA, which has -- in an attempt to protect people -- created an environment where they no longer talk to each other. Then we fight against a public juggernaut of misinformation sometimes fed into by these very corporations that make it seem as if what we live with is simple, IF we would just do what we’re told… far from the truth!
Aren't these problems are shared by all people with chronic illness?
Well, diabetes out-paces all other illness and those who live with it directly know this as fact, so do doctors, but you won’t hear them say it out loud, as they understand its overwhelming nature. Those who suffer from it are left to attempt to control an involuntary body function for survival, and even death statistics are incorrect due to reporting practices.
What steps would you suggest to start solving these issues?
We need to have a Roundtable that is led by those of us who have survived successfully long enough to bring value and change to the current paradigm. And the new paradigm needs to be a multi-factoral, multi-disciplinary blend of the modalities that best serve the diabetic, with the only bias being that it serves the diabetic and does no harm -- the essence of the Hippocratic Oath. And we need all parties who gain in the financial arena to be present and involved in helping us change the paradigm to an effective one on all levels.
Why did you decide to enter the DiabetesMine Patient Voices Contest?
Because I feel it important to share what I have learned in my half-century of both applied science (experience) and education, as well as the time I have been a warrior in the trenches. I have ideas about new and better ways of assisting those who have type 1 diabetes and educating those who don't. I am excited about the new things I will learn as an attendee, and I am honored to have been chosen.
What are you looking forward to at the Innovation Summit?
The opportunity to share my knowledge and suggestions as well as networking with leaders and other diabetics who are also on the path to improving diabetes support and understanding. Also the opportunity to eat lots of fresh fish… yum.
What a life you've lived, Betsy! Can't wait to meet you in person at the Innovation Summit this November. (Fish not guaranteed )