Ascending Diabetes: Trial, Error and keeping it simple

Even if you do not have diabetes yourself, statistics show that you likely have at least a friend or family member that is diabetic.

...adherence to treatment with diet, insulin, and exercise finds ample justification in the good health, comfort, and longevity of those who obey the rules as contrasted with the poor health, suffering, and shortened lives of those who are careless..."

- Elliott Joslin (early pioneer in diabetes)

‍MY EXPERIENCE

‍I was diagnosed with Type 1 diabetes (aka T1D, Juvenile Diabetes) on January 13th, 1988, at the age of 7. Over the last 30 years, I have learned that my top priority must be my health. If I do not take care of me, someone else will have to, and I do not want to be that burden... Diabetes puts your body behind a proverbial 8 ball; therefore, a diabetic needs to be better than a normal person in order to lead a mostly normal life.

I was diagnosed during the time of Regular, NPH, 3 minute blood sugar tests, and bent needle pump sites. I have tried every brand of insulin pump, CGM, and most glucose meters currently on the market, with the Medtronic 670G and Tandem X2 pumps and the new Dexcom G6 as the only exceptions (UPDATE 1/14/2019: I have been using the Dexcom G6 for the past few months. June 2019: I recently got an Eversense CGM and am on my 2nd 90 day sensor). The diabetes of today is much easier to treat and maintain; however, there is also a lot more information to process than in the past. More than ever, diabetics need a strong foundation of knowledge, consistency, and comfort prior to stepping up their treatment.

In addition, my family was a founding member of the JDF of SC which later became the Palmetto Chapter of the JDRF. I have participated in the following organizations since my diagnosis as a volunteer, staff member, adviser, speaker, and/or committee - board member: Camp Adam Fisher, Camp Kudzu, InsulinDependence, the Palmetto Chapter of the JDRF, the Georgia Chapter of the JDRF, the Faces of Diabetes, the Pediatric Endocrinology Dept of Emory University, and the former insulin pump manufacturer Animas. I was also one of the the first juvenile diabetics to successfully try both the Minimed (now Medtronic) and Disetronic (former Animas) pumps in the early 1990's at the Medical University of SC.

I started pump therapy in 1994 and began to slowly transition back to multiple daily injections 3-4 years ago after my pump site areas began absorbing insulin erratically. I now alternate between my OmniPod pump and Tresiba/Novolog MDIs (Multiple Daily Injections) as needed for insulin delivery, utilize a One Touch Verio or my OmniPod PDM for finger stick blood sugar testing, and occasionally use a Dexcom G5 or a Freestyle Libre for CGM (Continuous Glucose Monitor) monitoring especially during athletic events.

‍‍MY FOUNDATIONS FOR TREATMENT OF DIABETES

When you're diagnosed with Type 1 or Type 2 diabetes, there is an initial learning curve that can only be overcome with time, a willingness to try new things, and the motivation to be in control of your own disease. This may vary if the diagnosed is your child or if you are the guardian of a loved one. We will go into that more later in the post.

‍Diabetes is a Trial and Error disease and not every suggestion from your doctor, nurse, CDE, or friend will work for you. 99.9% of your "trys" will not produce negative consequences as long as you are checking your blood sugar regularly.

‍#1. TEST YOUR BLOOD SUGAR - In my opinion, this is the SINGLE MOST IMPORTANT rule for every diabetic to learn the the foundation of a healthy life. Many diabetics made fun of this ad (me included), but the late Wilford Brimley smartly said to, "check your blood sugar and check it often."

‍Before any diabetic is presented with any technology that provides them with an overload of information at diagnosis, they need to learn what it means and how often to check their blood sugar. I would argue that the checking of blood sugar is even more important than taking of meds (either oral or via injection) since in all cases, blood sugar determines treatment. Also, there is no "good" or "bad" blood sugar; only "in range" and "out of range." Blood sugars results are merely information used to determine treatment and should have very little to no emotional attachment.

#2. TAKE YOUR MEDS - Whether you are a Type 1, Type 2 or something else, you are likely required to take some form of medication. If Type 1, it involves injectable insulin. If Type 2, it involves oral meds, injectables, or a combination of both. If you have some other form of diabetes, you are likely on a combo of meds. You should take your meds as instructed by your doctor. After adequate experience, you should be able to go back to your doctor and tell them new things that you would like to try and/or suggest adjustments that you would like to make to your current regimen. After 30 years, I make adjustments to my insulin dosing as needed without consulting my physician unless I feel uncomfortable making the decision on my own. I also contact them when a new drug or device hits the market that I feel may improve my care. For Ex: when Tresiba (basel - long acting) insulin hit the US market, I messaged my physician, and asked them to call in an Rx. I started on the new insulin the following day, adjusted the dose as needed after titration, and have had great success.

‍I firmly believe that for most insulin dependent diabetics, insulin pump therapy is the best form of treatment; however, I also believe that all perspective pumpers should have a good foundation of knowledge and be completely comfortable on multiple daily injections prior to starting on any pump. Pumps are electronic devices and as with all technology, it has the associated technical difficulties, some brands more than others. Currently, insulin pumps are an insulin delivery system... that's it! Yes, they can do many other things that can add value and benefit, but at their core, they administer insulin based on the patient's programmed settings. As technology progresses, pumps will be able to do more; however, the companies that manufacture them will always prefer a new feature or device over a cure. A cure for Type 1 diabetes is not profitable long term. This is statistically shown in the historical reports from the JDRF that show the decrease in cure research funding.

‍LONG TERM PUMP THERAPY - Recently (over the past few years), many of my fitter diabetic friends that have been pumping for more than 10-15-20 years have elected to switch back to MDIs. As a "fit" person, you likely have a lower % of body fat. After 10-15-20 years on an insulin pump, you have limited pump site areas, and the buildup of lipohypertrophy affects the ability for pump sites to absorb insulin properly and consistently. Pump companies will tell you that you need to change your sites more often; however, we all know that sometimes the reality of regular pump site changes (every 3 days) is not realistic. This increasing trend of long term pumpers switching back to MDIs is another reason why I believe all insulin dependent diabetics should fully understand life with MDIs prior to starting on insulin pump therapy. Being fit is a double edged sword when discussing pump therapy but insulin can be administered in many forms and the pump is one of them. As the Artificial Pancreas tech progresses, long term diabetics like myself are excited to sample the options, but are not as optimistic about its long term success.

#3. EAT RIGHT - As the chart shows, this is my 3rd most important factor in diabetic health, and also the most neglected. Eating Right is a complicated subject that can illicit LOTS of passionate ideas and discussion about what is considered a "healthy diet". For the purposes of this post, a healthy diet is considered eating habits and food choices that promote and maintain overall, long term health.

Some of the more common "diabetic diets" are the ADA, Ketogenic, Low Carb, Whole 30, Raw, Vegan, etc. and all of them have benefits and consequences. I believe the first step for any diabetic should be to integrate "cooking at home" into their lifestyle. If you eat out for most of your meals, you are likely not in the best of health. Cooking at home allows you to understand and be in 100% control of what goes into your food and its nutritional makeup (carbs, protein, fat, sugar, etc.).

Growing up, I was always the kid that chose the apple over the candy bar, even prior to being diagnosed. I ate like a normal teenage and college student, anything and everything. In 2005, I made the conscious decision to change my life and learn to cook; I also joined a gym. My first avenue into cooking was via Men's Health Magazine. Every issue has simple recipes that I could follow and understand. I got a few other cookbooks, tried out new recipes that I found online, and experimented in the kitchen. I like to think I am a pretty good cook now and and enjoy preparing meals by feel rather than by recipe.

In 2006, I read "The China Study" by Dr. Colin Campbell. This book changed my life and demonstrated, with proven medical evidence, the need to have whole fruits and vegetables as part of my everyday life. I also decided to experiment with a vegan diet. Prior to starting, I consulting with my doctor. He suggesting running a myriad of blood tests so that he and I could see whether a vegan diet generated positive results. At the time, I was pretty fit and healthy, my A1c was around 6.0, and none of my other numbers (cholesterol, triglycerides, etc.) were outside of the normal range. After 45 days being a vegan, I decided to go back to a more normal diet; however, I also got another round of blood test completed. Overall, my numbers improved minimally; however, since they were already pretty good, a minimal improvement was a good thing.

About a year or so ago, Joe (my husband) and I decided to start eating a mostly vegan diet. We still occasionally have a slice from Pie Bar and sometimes eat eggs, but we try to stick to a vegan diet as much as possible and feel great! We also recently welcomed multiple children into our home that we are attempting to adopt. I do not cook separate meals for them and integrate non-vegan into some of their meals. If they choose to eat vegan when the get older, they can make that decision for themselves. I will never be the parent that takes my kid(s) to a playdate with marching orders on food consumption. Right now, they will pretty much eat anything, and that's a good thing!

‍When applying diabetic trial and error to food consumption, try anything and everything to see what works. The best part about changing your diet is that doing so will not likely cause any negative side effects, other than not enjoying the way something tastes. You can always return to what you ate previously...‍

#4. EXERCISE - Fortunately, there is a plethora of information on fitness and diabetes. One of the best websites for information is Diabetic Muscle and Fitness.

‍All of the diabetics featured on the above site are aesthetically pleasing; I would love to know if their current medical health matches their aesthetics and what that will be in 10, 20, 50 years, etc. based on their diet and exercise regimen? This is one example of a medical study that needs to be conducted. I respect all of these diabetics for being better than most.

For some, exercise could mean walking down the driveway to get the mail. To others, it could mean completing an Iron Man; however, to the average person, it means going to the gym and/or getting out to physically enjoy the outdoors.

Beneficial exercise should be engaging in any, safe physical activity that causes your heart rate to rise for an extended period of time. Weightlifting, crossfit, running, elliptical training, yoga, walking your dog, bootcamps/group fitness, etc. are all examples of physical activity. When considering an exercise plan for your life, you should first consult your medical team and then think about what you enjoy doing that is active. Do not start doing something you do not enjoy or are not comfortable doing regularly. Once you know what that is, go do it frequently, and after getting bored with it, go do something else. Every diabetic on the planet can exercise (in some way) and should do so on a regular basis.

‍When embarking on a new program, you will have a greater chance of success if you set a realistic goal such as: run a 5k, max bench press 135 lbs, complete MURPH under 15 minutes, complete a hot yoga class, burn 500 calories on the elliptical machine, etc. Setting yourself a diabetic goal may make sense later and should not be the primary focus if you are starting an exercise program for the first time or for the first time in a while.

Other than insulin (cause we need that to live), Eating Right and Exercising have made the biggest difference in my diabetic life thus far... - ME

#5. ADVICE - First and foremost, ADVICE is the information you get from your medical team. Your medical team should be comprised of at least one Endocrinologist that is focused on diabetes treatment. If you are currently seeing a General Practice, Internal Medicine, Pediatric, etc. physician as your primary provider for diabetic medical advice, get a referral to an Endo yesterday. Most non-endocrinologists are not equipped to properly treat diabetes.

Second, the best ADVICE you will get as a diabetic will likely come from another diabetic (mic drop). If you are the parent or primary caregiver for a diabetic, the best advice you will get will still likely come from a diabetic and/or other parent or caregiver.

‍If you are the parent of a diabetic child, this is the most important advice you will get from anyone (medical or non-medical). GET YOUR CHILD AROUND OTHER DIABETIC KIDS AS MUCH AS POSSIBLE... Every state in the US and many countries have normal summer camps for kids with diabetes. Even if they do not want to go, sign them up, and tell them they are going... Getting them around others like them helps them to feel less alone and allows them to learn from others by doing, seeing, and interacting vs just watching or listening. Even as the most observant parent or caregiver, your child will be safer at Camp than at home. When a kid is around hundreds of other diabetics, everyone else understands the warning signs for low/high blood sugar and acts accordingly. Also, every camp has a plethora of medical staff on site to jump into action should something take place. Camp is the best place to learn and try new things.

For me, Camp Adam Fisher was my "camp." I am very fortunate that my peds endo convinced my parents to take me to camp in 1988 less than 6 months after I was diagnosed. I learned most of my diabetes management skills from camp and from interacting with others.

Once you know more about your diabetes than your doctor/medical team, it is time to start trying new things...

Overall, Diabetes means test your blood sugar, take your meds, see your doctor, eat right, and exercise. If you fail to do one of more of these things, you need to be prepared to accept the consequences now or later down the road as you age. Elliot Joslin was a smart man, listen to him, and trial & error your way into self managing your diabetes.

CLOSING

Diabetes is a Trial and Error Disease and "everything is normal with diabetes" (Bethany); therefore, feel empowered to figure out what works best for you.

We live in the over-information age of diabetes and a large portion of the most important information is underutilized. When you are considering treatments for your disease, wait to introduce new technology until after you have mastered your current treatment, keep it simple, and always be willing to try new things.

If you have a topic you want to add, send me a message at dan@jdwoodstock.com.

If you want to have a constructive conversation about this or anything else, message me, and let's grab coffee or a beer.

Have a good one,

t1Dan