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My Life with Diabetes

-by Gary VandenBergh

 

Nearly 31 years has passed since I was diagnosed with Type 1 diabetes. I was already an adult when I was diagnosed but even so, I barely remember life without diabetes. Diabetes is a part of the fabric of who I am. Everything I do is shaded with blood sugar running through my mind. I try very hard to focus on the positive that I have gained from having diabetes but I worry about the long-term effects. Luckily, I am still in very good health with an average A1c of 6.5 over 30 years, not bad. How did I do that?

 

I credit that success with the foundation of my diagnosis, my first diabetes educator and my own proactive outlook. Nancy Zoebelein was the Certified Diabetes Educator (C.D.E.) at Englewood Hospital in New Jersey when I was diagnosed in 1983. I didn’t even know what a C.D.E. was but she set me on the right track from the very beginning. The echo of her words, however, still sting all these years later, “1983 is a good year to get diabetes”, she said because she thought that scientists were close to a cure. Ten years, she said. If only. In any event, the diabetes community was abuzz with results of the study indicating that tight control over blood sugar could prevent the onset of the dreaded complications all my friends and relatives somberly believed was my ultimate destiny. I, on the other hand, and thanks to Nancy, blissfully proceeded to take control. While her words of optimism still sting, my own words of practicality also ring in my mind, “just tell me what I have to do”, I said to her. Nancy’s optimistic, aggressive approach and my willingness to change my life in whatever way necessary resulted in a healthy life with diabetes. At what cost?

 

 

 

The cost has been a change in my lifestyle from a diet of high fat, red meat, fast food, carbs galore, not much in the way of vegetables, fresh fruit or exercise to a life of low fat, more chicken and fish, lower carbs – although I do love my carbs – plenty of fresh vegetables, a healthy dose of fresh fruit; but not too much due to its rapid rise of blood sugar, and more exercise. All-in-all what I was able to do was change my lifestyle from one that most Americans live to one everyone should live, diabetes or not. The result was a positive impact on all of my health numbers; cholesterol, blood pressure, weight and all the other micro numbers that indicate impending ill-health. Diabetes has forced me to be intensely aware of my health. It has given me the discipline to live a healthy life. I appreciate that but have an intense awareness that it is not an easy life and most civilians just don’t get that. I would venture to say that most doctors who don’t have diabetes themselves don’t get it either.

 

 

The first thing I do every morning, as you might imagine, is a blood test. I have a Continuous Glucose Monitor (cgm) and in the morning (and evening) I calibrate that. Calibrating the cgm requires entering the results of a finger-stick blood test into the receiving portion of the cgm. I’ve heard people say that they “wear a cgm”. I do not wear my cgm. I insert a sensor into my side and it stays attached to me for seven days. After seven days, I pull it off and insert another sensor into my other side and the cycle repeats itself. I do not “wear” an insulin pump either. I inject this device into my butt and move it every three days because it runs out of insulin and to avoid infection. These are invasive devices. Invasive devices are not worn, they are attached. I diverge here for this clarification because when civilians hear that you “wear” two devices to help control blood sugar, there is quaintness to the word, “wear”. “Wear” is a non-invasive word. To be clear, I have an invasive infusion site for my insulin pump that I must remove and re-infuse every three days. I have an invasive continuous glucose sensor inserted into my side that I change and re-insert every seven days. I also stick my fingers with small lancets 6 to 10 times a day, every day, to test my blood sugar on a moment-to-moment basis. That is what it takes to maintain a blood sugar as close to normal as humanly possible when the non-voluntary part of the system, the pancreas, does not carry on that function. This invasive, relentless aspect of diabetes is often glossed over yet it is an integral part of life with diabetes. It is a 24/7/365 endeavor filled with medical procedures that type 1s carry out continuously and those of us who do it are bound by the knowledge of what this entails and what virtually no one else understands: Diabetes is an invasive condition.

 

 

The ideal way I would live my life with diabetes were diabetes the only thing I did is that I would get up every day, do a blood test, figure out what I am eating, calculate the carbohydrates in that meal, dial the amount of carbohydrates into my insulin pump and let the pre-programmed “bolus wizard” figure out how much insulin to give for the meal. I would eat and head for the gym, swim for half-an-hour or more, check my cgm, do a blood test – trust me, the cgm and the finger-stick blood test rarely match and I always trust the finger-stick over the cgm – if my blood sugar is above 80 and the arrow on the cgm indicating what direction the blood glucose is heading is either steady or pointing up I would drive home, shower, do another blood test and head to work. If the arrow on my post-swim cgm is heading down and my blood test gives me a result under 100, I would have about 15 to 20 grams of carbohydrates before heading home, showering and doing another blood test. If you have diabetes, you get this, if you don’t, I would imagine your head hurts about now and I haven’t even left the house yet!

 

 

I work in New York City and commute by bus. I live 15 miles away and it can take me anywhere from 40 minutes to 3 hours! I travel with fruit, cereal bars and glucose tablets. This wasn’t always the case. I have been caught short of food over the years and am very lucky that after 30 plus years I have only been in the hospital once for a diabetes related episode. That was in the middle of the night during the days of multiple daily injections and NPH insulin – stories for another time! Once I get to work I do another finger-stick blood test. At this time of day I am usually heading downward, sugar-wise, so I will probably have a piece of fruit or, when living on the edge, a muffin or something “decadent’! I have tried adjusting my basal rate downward to prevent this late morning dip but then I get a late morning spike. My doctor prefers the spike, I prefer the muffin.

 

 

My blood glucose trends a little low until lunch so I am always either eating fruit of cereal bars in the late morning. Lunch is always a problem. If I bring my lunch it is obviously more predictable but working in Manhattan opens the door to all kinds of yummy, unknown sources of carbohydrates and lunch very often becomes a guessing game of how many carbs are in the foods I choose. Trial and error has become a trusted tool. The Falafel truck outside my building turns out to be about 75 grams of carbs for the Paris Falafel. Pizza? Forget it. Mostly I get a salad from the commissary at work. Often I am on a deadline and lunch is ordered in and then all bets are off and it’s multiple blood tests to try and stay on target and enjoy the good but bad delivered food.

 

 

I also dip a little late in the day and either have a piece of fruit or candy before making my way back to the bus home. Dinner is always an awesome healthy festivus because my wife missed her calling as a gourmet chef and my family and I reap all those delicious benefits.

Speaking of my wife, she is the most amazing unsung hero in all of this and really the one that helps to keep me right on track. She is my conscious and the person who knows how important our good health is. Her quiet firm guidance with healthy, delicious, home-cooked meals keeps me on target and keeps our whole family eating healthy meals. In a world where most families are either taking out or eating on the go, my wife, Nancy, keeps us very healthy with amazing home-cooked meals. The two amazing Nancys in my life deserve a lot of the credit for keeping me healthy! In the evening my wife, Nancy, and I will indulge occasionally in reduced fat ice cream or some sweets and even that is usually 70% cacao dark chocolate.

 

 

All of this is the base line of my perfect days with diabetes. Multiple blood tests, being conscious of what I am eating, what my blood sugar is, correcting when it’s high and treating when it’s low. I do the best I can each and every day but diabetes is not the only thing I do and therein lies the rub! Some days I do better than others and some days are a complete loss of control but c’est la vie. I do the best I can. Sometimes there are weddings, bar mitzvahs, cocktail parties, events with meals spread out over interminable hours and places where there is no food at all. There are office gatherings and birthday celebrations, bagel breakfasts, pizza lunches and drinks after work with colleagues. This is life and Life with Diabetes requires me to figure that out, on my own. Today it is easier than ever to find support with the internet, Face Book and Twitter but you still have to be proactive and eager to find it. I do ok with it but even just doing ok is stressful in an already stressful life. That sudden awareness, for example, that I don’t have any food with me and there is no food where I am and I don’t know when I will be getting to food and my cgm has a down arrow.

 

I try to remain cool and calm and know, or at least hope, that I’ll make it to food before I pass out. This is much more stress than any person without this relentless adversary in their system has to deal with. No one except another person with diabetes could ever get this. Even my wife, who can only worry intensely about it, doesn’t understand how I could possibly forget to bring food or how I left my glucometer home. Most people have all they can do to remember their keys and glasses and function in life without these additional food, glucometer and health paraphernalia requirements. Sometimes we with diabetes live life like we don’t have diabetes which, outwardly, it always looks like we do. The truth is that sometimes I forget to bring food or to change my pump site because I was too busy trying to live my life and now I have only 20 units of insulin to get me through 10 hours or more. These occasions are rare, but they do most certainly happen because in addition to having diabetes, I am human. I cannot possibly be on my game every single second of every single day but I do the best I can and yet, the relentless unforgiving nature of diabetes often makes you feel like you are failing. You feel like you are failing because one slip, one mistake can be disastrous. Most type 1s, however, are more successful than anyone without diabetes could ever imagine! That, in a big nutshell is a slice of my life with diabetes.

 

 

Gary can be found at:

 

Website: www.diabetesproject.com

Twitter: @diabetesproject

Tumblr: diabetesproject.tumblr.com

Blog: www.diabetesproject.wordpress.com

And my Life with Diabetes video: http://www.youtube.com/watch?v=-Iu8yunbM4c&list=UUbsqXqMSc_ieXmXBa--PVvQ&feature=c4-overview

 

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