Advanced Duration

Advanced Duration

The Making of a Diabetes Educator

Advanced Duration Blog

August 28, 2010

It took me 18 years after my initial diagnosis to really wake up to what it means to live well with diabetes. Up to that point I had just been plugging along and having diabetes was just a nagging background fact about myself. I knew I had to take insulin injections everyday or I would feel sick. I had long ago foregone testing my urine because I thought it was tedious, stupid and discouraging because my pee test results were always that murky brownish green or orange color. I usually ate sensibly, but I ate whatever I wanted to without regard for how much or how little. Those were the days before carb counting and creative meal planning and we were supposed to follow the good old ADA exchange system, which got boring and old in my teens. I pretty much stopped using it by the time I left Toledo, Ohio to go away to college in NYC to attend NYU School of the Arts.

During my early 20’s I lived the life of a free spirit and traveled as a dancer and a spiritual seeker. I searched for answers to “heal” my diabetes in available alternative health settings that were prominent in the mid 1970s. I tried juice fasts and being a raw foods vegetarian, so I could get rid of accumulated toxins in my body. I tried yoga and meditation practices to realign my physical and spiritual self. I tried herbs and supplements that were supposed to “cure” diabetes. I even believed that I could fast myself off of insulin and with hard work to apply affirmations, visualization and prayer I could reactivate and stimulate my beta cells to get my body to make insulin of its own. OH MY GOD, how little did I actually know at the time and how arrogant and stupid I was!

I did learn a lot about healthier eating of natural, minimally processed foods and how our thoughts influence the outcomes we experience, ie, the power of positive thinking. I knew I wanted to achieve some level of healing with my diabetes, but I did not understand what I needed to do to really take care of myself because I was pretty clueless about what was going on inside my body. I thought I was doing the right thing to get healthy, but in reality I was starving myself instead and destroying my health. I was losing weight and thought I was maintaining a healthy weight for my small frame, but the weight loss was more from muscle mass being consumed as energy and fuel because I wasn’t eating properly or getting enough insulin to maintain health and sustain life. Fortunately, I was physically active with dance, yoga and outdoor agricultural activities.

From 1978 to 1982 I went through several episodes of severe DKA. Let me tell you, D sisters, if you haven’t been there, you don’t want to go there – and if you have been there, you don’t want to go there again if you can avoid it! The fourth hospitalization for DKA, in as many years, came when I was married to my first husband and was after I had miscarried my first pregnancy at 6 weeks. I prayed and asked for healing. I asked GOD to please make my diabetes go away, and if it was not possible for it to be “cured”, then please let me learn what I must do to be able to live with it without getting sick with DKA for the rest of my life.

The healing for me came in the form of a hospital RN coming into my room and asking me what I understood about how insulin works in my body. I had to admit that I didn’t know. She gave me a book, published by Eli Lilly in 1979, on what insulin is, what it does and why. I remember she apologized to me that it was written on the level of a fourth grader, but she encouraged me to read it anyway, saying “You might learn something new.” Well, I read it from cover to cover – twice! It opened my mind and for the first time in my life with diabetes, I had an understanding of what was insulin was all about. Before I went home, the nurses introduced me to monitor my BGs on an Ames Glucometer. I began to absorb everything I could about what to do to take care of my diabetes. I joined the local ADA chapter and volunteered to hang out in the office to answer phones and do filing, copying and help with mailings just so I could learn as much as I could about diabetes updates from other people with diabetes who worked or volunteered there. Eventually, I was trained as an ADA peer educator and began to attend peer to peer support groups in Long Island and NYC.

And so was the beginning of my journey towards becoming a Certified Diabetes Educator.

 

 

The Making of a Diabetes Educator

Advanced Duration Blog

August 16, 2010

Around the time of my first Endo visit, I married my husband Clyde, and started looking for a job. As a graduate in 1983, with a bachelors degree in Family & Consumer Economics, there were no jobs available for Home Economics Teachers, and the Want Ads were covered with openings for nurses. Clyde, who was already a nurse, helped me challenge first semester nursing, and 18 months later I found myself sitting for the Tennessee State Board of Nursing exam. During my experience in nursing school I realized my instructors knew less about diabetes than I, and the desire to help people live well with diabetes became my life long passion. . . Well, almost?

The first job I took was one of working on the diabetes floor of our local hospital . . . but not on the end where the “diabetes education” was done . . . Rather, I was assigned the end where the “Skilled Care” long term, pre nursing home patients resided. And what a LOT of work it was. The nurses who were already burned out loved to “dump” their difficult patients on me and called me “Nancy Nurse” because I couldn’t sit down until everyone’s needs were met . . . and quite honestly that never happened. Then to add insult to injury they chided me because they didn’t think I took care of myself or my diabetes. One day they even called one of the Endocrinologists aside to ask him if he thought I was taking care of myself. . . He promptly delivered a reprimand.

His comments shook me up, and I decided I’d better do something to get my blood sugar under control before an upcoming appointment to see one of his colleagues. So, I adjusted my insulin dosages, as best I knew how, and a few weeks later I found myself in an auto accident that forever changed the course of my life.

As my jaw, teeth, and lips rotted away, and my life weighed in the balance, I reluctantly agreed to go on an insulin pump. My face was mutilated and so was my will to fight. Self doubt replaced my dreams . . . Perhaps I was not good enough . . . Comments from my healthcare providers left me feeling that having diabetes somehow made me less of a person, and less competent then my peers in educating others about my disease. My heart died, along with my dreams. My memory recall was affected, and I no longer felt I could safely provide care to my patients.

My resume soon looked like a travel log, as I gravitated from job to job, hoping to find my place in the grand scheme of things. When I finally landed a job as “patient educator” in a rehabilitation hospital my hopes began to grow . . . That is, until I was slighted over for a job opening as diabetes nurse educator, in my Endo’s office. Perhaps “they” were right . . . perhaps I didn’t belong, and didn’t have anything special to offer other people who lived with diabetes?

Those years of turmoil were not for naught however. Through the years I have learned that God doesn’t waste anything. Every experience of life brings us to a point where we can better accomplish our mission and purpose in life . . . And that’s what I hope to share next!

AADE 2010: Conversations That Matter

Advanced Duration Blog

August 10, 2010

Our arrival in San Antonio for the 37th Annual Meeting of the American Association of Diabetes Educators, Tuesday afternoon, marked the beginning of a 5 day endurance marathon. With so many choices and places to focus and expend our energy, and so many exceptional learning opportunities, there was scarcely a spare moment of time.  As we perused the exhibit hall you may have wondered and chuckled that we looked like “Bag Ladies” eagerly collecting and stowing our treasures of educational tools and resources.

In the midst of all our activity the need to manage our diabetes was ever before us. Running, sitting, running again, and the sweltering heat . . . all paid a toll on our ability to keep our blood sugar levels between the lines . . . and by evening our reserves were over-expended. Connie’s low came first, with a BG of 39 mg/dl. As she lay in bed with covers over her head like a mummy, trying to regain enough energy to complete her online assignment for the advanced nursing class she is taking, Claire’s BG began to drop, and she could not stop moving, even though her blood sugar was 49 mg/dl with 1.45 units of IOB (nearly half her meal bolus). Cindi followed her around as a constant reminder to eat. As the evening wore on it was Cindi’s turn to drop into the low 50s, and true to nature, she calculatingly ate the exact number of CHOs needed to bring her BG back to normal.

By the time of our presentation on Friday we were well prepared with a line up of juice boxes, glucose tablets, and meters on the panel table before us! The room was full and the energy palpable as we shared the challenges that many people living with Advanced Duration Diabetes face. During the Q&A period, Educators lined up to share their personal experience and ask their own questions about life with diabetes . . . Perhaps for the first time in history that Diabetes Educators living with diabetes were comfortable enough to share their personal experience in such a public forum.  .  . Within the safe space created by Conversations that Matter!

Throughout the coming weeks we hope to tell you more about what happened in that room . . . but first we need to share a little more of our experiences as women living with diabetes, which brought us to this moment in time . . .  So stay tuned for our stories in “The Making of A Diabetes Educator.”

 

Cindi's Diagnosis

Advanced Duration Blog

August 3, 2010

I was diagnosed with type 1 diabetes at the age of 17 months.  June the 17th, 1973. In those days only hospital labs had glucometers. They were not portable, and had to be plugged into the wall!  My early years with diabetes centered round the color my clinitest tablet turned in “my combination” of urine and water.  Bright blue was negative. Dark brown / burnt orange was 5+. Oh the ways I learned to cheat!

My first memories start around the age of 6 when I was sent to "prison" at Camp Nejeda in New Jersey for 2 weeks.  This  was my first exposure to other kids who had  diabetes, and it was nice not  feeling alone anymore.  I hated to go, but was always  glad to be there.  At camp, I learned how to be  "normal".   Very important, for a 6 year old!  When I turned 9 I went to Camp NYDA.  This was also a sleep away camp, but it lasted  4 weeks.  I learned many great things,   – like how to give injections, and how to test my blood sugar. By this time, glucometers were somewhat portable, but they still relied on a power cord.

At camp, I also learned about insulin pumps, and  my first camp boyfriend  wore one. I started on a pump in 1985 when only 2 companies manufactured them: Medtronic and Eli Lilly.  I chose Eli Lilly’s Betatron, and boy did I feel like a million dollars (which  is likely what they were worth back then)!!  I could finally sleep late and devise my own eating schedule. The technology was not as good back then, however, and I wound up in the hospital with DKA. It took 10 years before I went back to pumping, this time with Medtronic. All was great, until once again,  I went into DKA, and  was hospitalized in ICU with an Arterial line  and intravenous  potassium - OUCH!!  Then again, I went off the pump, and did not go back until 2007.

At the age of 9 I started seeing a new endocrinologist.  My A1c was well over 12%.  If you are  thinking “why,” as your mouth hits the floor, know that my mother never received diabetes education, or if she did she was too afraid to act on it. My first appointment  was HORRIBLE. What do mean I can't eat hot dogs, sugar wafers, and chips ahoy? That’s what  my first endo told my mother to feed me???  I'm only 9!!!!  My teenage years were not much better. I was the only child with diabetes at school and the only child at home.  I had no one to take my anger and frustration out on but myself.  I would "sneak" chocolate bars, sour cream & onion potato chips, and Hostess chocolate donut gems to comfort myself.  That is until my mother  searched my room and found  all the wrappers  in my "hiding" spots.   Guess I could have used some help  devising better places!

So, now you know how Connie, Claire, and I began our journey's with diabetes. And, it's time for us to head off to AADE again. This time in the extreme heat and humidity of San Antonio,  to further  grow and develop as diabetes educators. But this year is different.  We have been chosen to present a session to our peers!  Us, the C3 Sisters, sharing our experience of learning how to manage the challenges we face as people living with diabetes.

Come back next week to read  how our venture goes!

 

 

Connie's Diagnosis

Advanced Duration Blog

July 26, 2010

My journey with diabetes began during the Christmas holidays when I was 8 years old (in the third grade). In late November 1962, I had the mumps. I remember feeling sick and weak a lot after that, especially during after school dance classes. My mom took me to the family doctor and he ran some tests. One day, I overheard my mom and my grandmother talking to each other in the kitchen. Mom was crying and saying “they don’t know what’s wrong with her – it might be anemia or leukemia or diabetes.” Gramma had her arm around mom’s shoulder and was comforting her. I backed out of the room, without them knowing that I overheard anything, and returned to the desk where I was doing my homework. I sat for a moment and reflected on what I had just heard. I didn’t know anything about what I just overheard, except I seemed to know that leukemia made children very sick and they usually died from it. I remember saying “Please God, whatever I have, please make it something that I can live with so it isn’t too sad or too hard for my mom.”

My parents had gone through a very painful divorce a year and a half prior. My poor mom was a now a single mother with two small children (this was 1962, not very common in those days), working full time as a dance teacher and choreographer, and now had a sick child to deal with. What unfolded for us was the lifelong journey of living with diabetes. God must have heard my prayers before they were ever said. Mom and I are still here. I continued to take dancing lessons and performed in dance and theatre productions throughout my childhood, high school and college years. I went to NYC and attended NYU School of the Arts majoring in acting and dance. I went on to perform in regional theatre and in several ethnic dance company productions during my twenties. Diabetes never stopped me from pursuing what ever I set my heart, mind and actions to pursue. Diabetes does not define who I am, but it has given me a framework in which to live a healthy and self-responsible life. Throughout the various stages of life and the projects I find myself involved in, I always remember to thank God for giving me a lifelong disease that I can live with.

Claire's Diagnosis

Advanced Duration Blog

July 25, 2010

Hi, I’m Claire!

By now, I am sure you are wondering what happened at the Moroccan Restaurant that night. But before we tell, we think it’s important for you to know a little more about us. One thing I will say, however, is how tremendously healing it was to share our stories with each other. Somehow it brought purpose and meaning to the challenging experiences we’ve faced.

As for me, my diabetes story began in Singapore where I was attending a boarding academy for Missionary Kids whose parents worked in the Far East. My parents were living in Korea, and it was April of 1978. I’d been fighting pneumonia and fatigue since Thanksgiving, and my older sister, living in Tennessee, had recently found out she had T1 diabetes. Unbeknown to me, my Mother sent word to the school nurse to arrange a glucose tolerance test. Following the test I returned to school for my afternoon class, wondering how a person could feel so awful after sitting around all morning. As I stood at the door, feeling as though I would pass out, our school nurse came and pulled me aside. She told me I had diabetes and needed to go back to the hospital. My blood sugar had peaked at 400 mg/dl.

When I arrived back at the hospital I was told I needed insulin injections, and if my blood sugar began to drop I might feel a little “different” and should eat something. They gave me a tiny book of food exchanges, told me how much I could eat at each meal, and admitted me to the Maternity Ward? Late that night I started to feel a little strange, and called for my nurse to explain that the Doctor told me to eat something if I felt funny, as I might be having an insulin reaction. The nurse quickly called for reinforcement and before I knew it, every light in the room was on, and 3 nurses hovered over my bed with serious panic in their faces. I reassured them that everything would be alright and all I needed was a little something to eat. About 30 minutes later they reappeared with a glass of warm milk, sweetened with honey . . . I guess that’s what they fed the babies??Needless to say, I didn’t receive much education, and I already knew more about diabetes then my health care providers! Sound familiar? Fortunately the school nurse was able to teach me how to give injections, and how to cut my toe nails . . . straight across to keep them healthy. Since then my toenails have never been the same . . . wish I’d stuck to the old way!

Five years later I received my first blood glucose meter.  .  .  a rather bulky machine, requiring a spray of water at 60 seconds, and another 60 for a reading. The lancet devise looked like a guillotine and hurt like one too . . . Not that I actually know what a guillotine feels like! After seeing my numbers it was with great consternation that I made my first appointment to see an Endocrinologist. What would he say about my blood sugar bouncing back and forth between 50 and 350 mg/dl? NOTHING! In fact he told me I was doing just fine and didn’t need to change a thing. I may not have known much about diabetes back then, but I was certain blood sugars like that were not good for my body . . . and if an Endocrinologist couldn’t help, what hope did I have?