Tips for Taking Charge of Your Diabetes

Ann Bartlett Health Guide
  • When you are diagnosed as a 5 year old, your advocates for the next 12-15 years are your parents, who have to wade thru the rough waters of parenting as well as helping that child learn about, and cope with, diabetes.  Your pediatric endocrinologist has to wade thru the issues with your parents and be an advocate to them and you!  I was very fortunate to have had parents who thought outside the box and a pediatrician who believed their instincts were best and supported them with compassion and practical advice. 

     

    A perfect example of their relationship was when my mother gave me a morning dose of insulin in the evening.. 3 times the amount I would have normally taken!  She raced to the phone, frantically calling Dr. Wade, who promptly said “Well Charlotte, bake her a cake and add ice cream!” I remember eating the cake and asking for milk and mom said “how about a coke!”  I survived, but I definitely remember the sugar hangover the next morning!  Dr. Wade took fear and turned it into humorous advice and offered my family a sense of security!

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    His rule of thumb: if I was sick more than twice, admit to the hospital to avoid dehydration and a longer recovery.  I still use that advice today, and every ER has been astonished by the good sense.  What Dr. Wade instilled were boundaries for better health.  He helped my parents understand the nature of the disease, and in turn they taught me how to live with it and let it be part of who I am and not let it become what I am.  As I grew up, moved out on my own, I never managed to find another Dr. Wade.  And over the years, I fell victim to my own laziness and lack of knowledge about diabetes care and progress.  The doctors were quick to point out that I should wear a pump, but I was very active and when the doctors suggested that I change my lifestyle to accommodate the needs of the technology, I simply quit.  Between disconnecting with myself and the doctors’ disconnect with my lifestyle, it was inevitable that at some point something would have to change.  And it did.. in a big way!

     

    A couple of years ago I started having odd glucose readings.  For example, I ran a 10-mile run and upon my return to the house I took my BG and it read 548. Over a couple of months, I noticed that my BG had risen consistently into steady 300s.  My endocrinologist concluded that I did not have control.  At the same time, she diagnosed me with diabetic stomach due to increased reflux.  A few months later, I found myself in an ambulance and my body just seemed to be loosing control.  By the end of the day, I was lying in recovery having had my gallbladder removed.  The surgeon informed me that it was not diabetic stomach, that my BG was elevated due to the liver having to excrete more bile than normal, and that releases more sugar into the system. When I asked if it was diabetic related, he told me no, that 40% of the population would loose their gallbladder.  At that point I had many questions about what I had been told.  During my month of recovery, I made a promise to not only know my physical self, but to know my diabetic self-better!

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    I started reading everything, I knew stuff, but in what order do you use them?  Then I found Gary Scheiner’s book “Think Like A Pancreas”.Gary was a type 1 diabetic, a CDE and an exercise physiologist and his book was filled with humor and practicality.  I read the book while flying out to California and I read the book again flying back from California!  The next day I called and asked for an appointment with Gary at  Integrated Diabetes Services in Wynnewood, Pa, a suburb of Philadelphia. 

     

    Gary looked over all my “stuff”, meters, insulin, syringes, and logbooks.  His first comment was that my diabetic technologies were outdated and that I should be using an insulin pen.  He asked me to tell him what I knew about diabetic complications, and for the next couple of hours he easily kept my feet to the fire.  When I left his office that afternoon, I had med express delivering supplies to my home, a new meter, an insulin pen, a plan in place to find a new endocrinologist, and a plan to work with anther CDE in his office who was a nutritionist, Judy Tripathi.  Gary made me feel in control and that’s what motivates me!  After 2 months of working over the phone with Gary and Judy, my A1C came in at 6.3.  Wham!  I was back on track!  At my new endocrinologist’s office I was told I had no diabetic complications and for someone who had the disease as long as I had, that put my in the 2 percentile, and she encouraged my continuing work with Judy, who had quickly become a lifeline to feeling good about my diabetic decisions.  Another motivating day!

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    Over the next year, I worked via the phone once every couple of weeks with Judy.  She walked me thru the trials of moving from injections to the pump, guaging carb counting and insulin needs and was there for me when I had the flu and the doctor’s office was not. For me, what made a huge difference in my team of advisors, was that Judy and Gary were both diabetes professionals AND diabetics, therefore they understood it at the deepest level.  Issues that seemed problematic before suddenly had very easy methods for troubleshooting.  It was a dramatic difference from resisting change, to looking at change as a new idea with more possibilities.  They understood the need to live WITH the disease, not be fitted to the disease!

     

    Some tips on becoming your own advocate:

     

    1)      Know the disease.  Even if you live with it, every few years we need a refresher, because as you refresh about the effects you also learn what science is doing to improve the methods of care.

    2)      Think about your lifestyle.  One of the biggest changes I’ve made is I went on the pump.  After a year, I still can’t say it’s the right choice for me, I’m an avid outdoor person and pumps don’t like extremes of any kind.  But what I can tell you is sitting here during my workweek; it simplifies many things for me.

    3)      If you are thinking about adjusting your system of care, like adding a pump or adding a dynamic that changes your typical diabetic routine, talk to your CDE and take your time exploring and preparing for that change.  Most often, I find my CDE knows more of the lifestyle stuff than my endocrinologist. 

  • 4)      I’ve broken up my diabetes care into two categories: Endo care and CDE care.  My endocrinologist I want focused on my general health, CBC, physicals, heart health, BP and anything diabetic related that seems erratic that can’t be explained.  I want them to feel free to advise on my blood sugars, but often there is too much to cover and I want them to focus on their strength.. the microbiology of diabetes.  I have felt that my CDE is my answer, and short cut, to happiness!  There are tricks to the task at hand and they seem to know them and can take the time to explore it with you.

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    5)      Be realistic.  I hate this one!  Sometimes, all the squawking I do is just resistance.  When I worked with just the endocrinologist, I listened but often didn’t change or didn’t know how.  Since working with Judy and realizing that I didn’t need to change my lifestyle, I’ve been less resistive.  And when the two of them chime in with the same comment, I need to listen and respond!

Published On: March 12, 2007