We 'the Diabetics.'

We don't like being identified as 'diabetics.' Diabetes does not define us, we define the health challenges diabetes brings to us. The problems that we face, wage war against, lose to, defeat, and acknowledge make us stronger people. Our struggles are unique and we acknowledge that everyone else has to deal with their demons too. If we all sit together and throw our problems into a basket - eventually most of us will end up taking our own problem back. Problems cannot define us - it is how we deal with the curve balls life throws at us that help to eventually make us better, stronger, more compassionate and less judgmental.

When I was first diagnosed with diabetes, I was afraid. That was indication that I needed more information. To me fear means ignorance and being afraid propels me to ask questions and hunt down answers. Thanks to the web and access to doctor friends I was able to arm myself with enough information to know that I needed to act, needed to take charge, needed to make changes so I could overcome my fear. I had no family history of diabetes, other than cousins with whom I had never discussed their condition. Information is available from medical text books, websites or research papers; in addition I needed to have first hand information from those dealing with diabetes everyday. Forums, social networks, support groups - the people here are the ones I learn from and when I hear their struggles I can appreciate how well I am doing, or build on hope that I can continue to do better.

I come from a culture that has rice and fish as their staple. A culture in which life revolves around food. Where a simple everyday meal is actually 5 courses.

Feast for one!

Everyday Meal

The first thought that came to mind on being diagnosed was, "I have to give up rice." That was 'myth #1' playing its trick on me. As time went on and I learned more, the myth changed to fact, "I have to control the portion of rice I eat." Not as depressing. :) "I need to up the quantity of non-starchy vegetables on my plate." Completely doable. "Fry less, grill more!" So much less time in the kitchen. I like it.

Grains, greens, & fish! hmm hmm good!

That is how knowledge and information slowly but surely took the fear out of my equation of dealing with diabetes.

(Bood sugar - (rice + sweet treats) + doctors) X FEAR = END OF LIFE AS I KNOW IT.
Changed to
(Blood sugar + portion control + healthy lifestyle + medical supervision) X INFORMATION = Controlled Blood sugars and feeling great!

Information put me in control. I was able to adjust to lifestyle changes because they were not dictated by others or by fear, but by my understanding of what was needed, why it was needed, how I could measure and monitor my progress and experiencing how good it all felt. I no longer fear the rice or the rice-pudding on my plate. I have experienced how good robust coffee without sugar really tastes. I have discovered I love bitter melon, kale and carrots. I have developed new recipes of foods that taste even better without potatoes. All, while I continue living life as I always did, just a little more consciously, keeping myself present and enjoying life as a purposeful event.

No, I am not a diabetic. I am this complete, beautiful, irritating, compassionate, 'sweet,' silly, lazy person - who happens to have diabetes. I enjoy living a sedentary lifestyle - reading, writing, watching TV, sleeping and sharing the skills I have acquired over half a century to make the world around me a little better. No I do not identify myself as a diabetic - except to say that diabetes is a part of my life. 

Importance of Support

Hundreds of thousands of people all over the world have diabetes. Some know it, some do not, some ignore it and others pay good attention to it. Many who do not have it have pre-conceived notions about diabetes, its causes, its symptoms, its 'cures' and are often the ones who seem to believe are best qualified to give advice to the 'ill-informed' who have diabetes. Reading about diabetes is not enough qualification to be a diabetes advisor just as learning about a car is not enough to drive one on the road.

In my personal experience I find that health care professionals who are diabetics are the best people when it comes to providing support to the patients suffering from diabetes. They understand two things - each patient is unique and diabetes management requires both knowledge and a wide open mind. No two diabetics react the same way to treatment, to food, to exercise, to time of day or any other variable. This means that even if two patients have the same HbA1c, their insulin needs will be different. If two patients weigh the same and eat the same food their blood sugar will react differently to the food. For these differences in reaction a support group made up of diabetics and health care professionals is an essential part of diabetes management. It helps a diabetic to understand that the challenges they face may be unique but that solutions for these challenges are always possible to figure out. With patience and perseverance diabetes can be managed so we live a productive and qualitatively good life.

In my opinion anyone suffering from diabetes must do two things to get on the path to controlled sugars - consult a good endocrinologist and connect with other diabetics. A good endocrinologist is one who listens to you, asks you questions about lifestyle and habits, encourages you to keep records, is open to answer your questions about information you have from the internet and other diabetics and is knowledgable about the research on diabetes and its management. A good support group is made up of people who have diabetes, are willing to discuss the challenges they face, are willing to listen to your challenges, are willing to share ideas and information that have helped them along the way and are not judgmental about you. All diabetics go through tough periods when all we want is someone to listen to us crib about the challenges - no advice, no sympathy needed - just an open ear. We crib and then we go back to what we do best - manage our blood sugars.

Controlled diabetics have a lifestyle of their own. The faster we adjust to it the less stressful it is. An acceptance that simply popping pills or injecting insulin is not enough to stay fit is something all of us who strive to control our blood sugars understand. Getting up in the morning and pricking a finger for that drop of blood that will more or less tell us how unpredictable the day will be is a part of everyday life. Deciding what to eat and when, how often to test blood sugar and if necessary ketones, pack enough candies or juices to combat the lows, make sure pump supplies, glucose meter, insulin are all available at all times - just some of the things to consider every day.

Family support is an essential element too. Being surrounded by people who accept you and your lifestyle; understand the urgency for treating highs and lows; accept the sudden changes of mood and just being there without making you nervous is all that is needed.

Don't sit in front of a diabetic and gorge on your ice-cream like it is manna from the heavens, but don't hide your ice-cream from us either. We could eat that ice-cream and take insulin to keep our sugars down you know, but we choose not to! And by the way, if we choose to, don't tell us we shouldn't. It is really none of your business. We know what we are doing.

Watching some stranger enjoy their red velvet cake topped with strawberry icing is one thing, but watching the spouse pounce on that cake as if it was the juice of life itself can be traumatic for a diabetic. :)

Diabetes - As I know it.

As far back as I can remember I see myself as overweight. Both my parents were overweight too, but some time during my early teens they went on a planned diet and got trim. I have one sibling who has never had a struggle with weight. I love to eat, I always have, but overeating has never been my bane. 

When I was 40 I was diagnosed with Adult Onset Diabetes. Prior to the diagnosis, I did not pay attention to the symptoms like excessive thirst, polyuria, exhaustion - just taking them in my stride and somehow explaining them away. It was only when I was refused life insurance and ordered to see my physician instead, that I happened to be diagnosed. Hemoglobin A1c (HbA1c) is a test that measures the average blood sugar over a 3 month period. For a controlled diabetic a count between 6 and 6.5 is considered acceptable. My first test indicated I was at 22.2. My physician considered starting me on insulin right away but decided not to do so as my body had clearly adjusted itself to the high sugars and giving me insulin without admitting me to a hospital where I could be under observation may prove to be risky. Instead he put me on tablets, gave me a glucose meter and suggested I check my sugar 4 times a day for a week and report back to him. The journey of checking blood sugars between 4 to 8 times a day began then and still continues.

The Glucose Meter that is my constant companion.

My journey on board the roller coaster called Diabetes Mellitus has been a rocky one. It began with obeying my doctors and slowly moved into my active participation in the management of the disease. I truly believe that every diabetic MUST SEE A GOOD ENDOCRINOLOGIST* as soon as possible. Depending only on the primary physician to control diabetes is not a good idea. Diabetes is not called the ‘silent killer’ without reason. It is one of the most subtle diseases. One that has no visible signs and so can be kept completely hidden from even your closest family members - until it is too late. Having high sugars flowing through the blood is often likened to having shards of glass flowing through the blood vessels. The sugar harms the lining of the blood vessels  thus damaging vital organs of the body and death due to complications of diabetes is slow, painful and inevitable - unless the sugars are maintained at a stable level through diet, exercise and medication and/or insulin. A good endocrinologist who stays in touch with new developments and updated about the research on the disease is a life saver who helps to live a better quality of life. 

There is another peril with diabetes which is often times fatal - hypoglycemia. Blood sugar dropping too low causes the brain to stop functioning and can lead to a coma and death. Many diabetics die in their sleep due to hypoglycemia unawareness. Generally the liver takes over and pumps glycogen into the blood stream if the sugar drops too low, but if a diabetic has multiple episodes of hypoglycemia over a few days the liver may not be able to produce enough glycogen to bring sugars to the desired levels in the blood, thus leading to death. 

Once I was diagnosed I started reading about diabetes, the research that has gone into this disease is extensive and managing this disease so it does not kill us has become very possible today. Diabetics under good management can live productive and long lives. There are two types of diabetes - Type I and Type II. Type I diabetics have non-functional pancreas and must be given insulin, from the beginning. Type II on the other hand produce insulin but the cells of the body are incapable of recognizing it and so stop the sugar from entering the cells causing loss of energy and rising sugar in the blood. The two types are distinct and even though both cause high blood sugar levels they are pathologically and physiologically different. Diet, exercise and weight loss can reduce the blood sugar levels in Type II and many pre-diabetics can get away without medication or insulin. Type I MUST get their prescribed doses of insulin to survive. They are Insulin Dependent Diabetics. Diet & exercise without insulin do nothing for them. 

Adult Onset Diabetes, Diabetes Mellitus or Type II are different names for the same condition. I have it. Over the years my pancreas have slowly but surely lost its capacity to produce insulin and so I am now Insulin Dependent. I started taking short acting and long acting insulin injections about 4 years ago. 3 to 4 injections every day. At this time I was still under the care of my primary physician. I visited her regularly 4 times a year, had blood tests done before every visit, checked blood 5 to 8 times a day, ate on time, limited portions and apparently was doing very well. My HbA1c went from being 7.5+ to 5.9 consistently for the next 18 months. The challenge was that I was gaining 10 lbs. every 3 months and was feeling exhausted and depressed all the time. During the 18 months that I was on insulin injections I had about 6 falls. I would be walking and for no apparent reason fall. My fat paddings saved my bones but it made me feel very vulnerable. Eventually I pushed my physician to send me to an Endocrinologist and she agreed. 

A good Endocrinologist with a strong support system is key to managing diabetes. A nutritionist, a diabetes educator, along with taking control over ones lifestyle and habits is the minimum requirement to improving the health and well being of any diabetic. Even after all that, diabetes is a challenge. Nothing can replace the normal functioning of the pancreas and the insulin that is produced by ones own body, and so it takes time, effort, patience, knowledge, perseverance and support to manage blood sugar levels. While I was on pills and before I was put on insulin I felt more under the control of diabetes. Today I feel I control my diabetes. It takes time, effort and knowledge but I do know I am in control.

My journey has been tiring and often frustrating. The weight gain, lack of energy, highs, lows, uncertainties, unexplainable swings of sugar levels and moods are just some of the challenges that I face from day to day. This experience has given me an understanding of how subtle and complicated diabetes really is. I prick my finger before every meal or snack and measure the carbs in that food so I can determine the insulin I need to take before I can eat the first morsel. How much we take our body functions for granted. Imagine being someplace with friends and deciding to stop for a cup of coffee and cookies at the Starbucks or even meeting a friend at Dunkin Donuts for tea and bagel. Not for me. I would rather just watch you bite into that cookie and continue talking instead of pulling out my glucose meter and strips, prick my finger, figure out the total carbs in that cookie, enter the info so my pump can give me my life saving insulin juice, before re-starting the conversation. It still does feel like I AM in control. Like I said before diabetes is a subtle disease that works silently but with proper management it can be kept on a tight leash.

Every meal I eat needs to be accurately measured for its carb content. An incorrect measure could mean my sugar could be too high or too low so if I am on the road driving I need to be careful. Too low could mean blurry vision, confusion and weakness; too high could mean irritation, discomfort and blurry vision too. Only way to know for sure - finger prick a couple of hours after the meal. 

The pancreas produce insulin, is responsible for determining the requirement and releasing insulin into the body so the blood sugar levels stay balanced and within normal range at all times. I am on an insulin pump - a computerized machine the size of a pager that gives me insulin 24 hours a day. 

Pump - another companion!

I program it based on insulin needed to keep blood sugar balanced. I need different quantities to be injected during different times of the day and I need to tell the pump how much to give me for a meal based on my sensitivity to the carbs I am eating. It takes into account different information so it can compute my requirement. Day to day life varies and chemical changes are occurring in our bodies based on different life experiences. A working pancreas takes all of this into account before determining the insulin requirement of a healthy person. The changes are an unknown for pump therapy and very often it is only after the peak or valley of blood sugar that I know that something has changed. The need to check blood sugars at least 5 times a day - on waking up, at breakfast, at lunch, at dinner and at bedtime is absolutely essential for every diabetic whether Type I or Type II and whether on insulin or not. It is what drives how blood sugars are to be maintained. Sometimes I have had to check my blood sugar 10 times a day to stay on top of it. 

Waking up in a sweat with the heart pounding; groping for the glucose meter in the dark; checking the blood sugar in the light of the cell phone (so as not to wake up the husband); counting 15 skittles and munching them at 3:00 AM; waiting 15 minutes to prick the finger again to make sure the 15 skittles were enough - this has become an accepted part of life now. Being on the pump and a potent insulin has helped with slowly but surely losing the weight, which is great news but it also means that the amount of insulin needs adjustments every now and again, which translates into more finger pricks, more measuring, more fluctuations, less sleep, less energy........

I have adjusted to life with diabetes and have learned to take it in my stride most of the time. Having a good endocrinologist and his team who care and understand not just the condition but also me as a person is a huge help. My HbA1c has consistently been between 5.9 to 6.3 over the last 3 years that I have been on insulin. I have lost over 20 pounds in the 20 months I have been on the pump. I am eating better than I have in years. Now if I could have a husband who understood my condition better and was less passive and more supportive........ :) The roller coaster ride continues!

*Endocrinologist= Endocrinologists have the training to diagnose and treat hormone imbalances and problems by helping to restore the normal balance of hormones in the body. The common diseases and disorders of the endocrine system that endocrinologists deal with include diabetes  and thyroid disorders.