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Gifts of Diabetes

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December 22, 2010

Diabetes is the last thing any of us would consider giving as a Christmas Present… And in fact, it is easy to find diabetes a burden during the Holiday Season when we are repeatedly bombarded with the need to exercise restraint over holiday sweets, as we Carb Count and portion control in the midst of an over abundance of sumptuous foods.

What a long, strange trip it's been

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December 1, 2010

If you have been reading Claire’s, Connie’s, and my blog over the past few months, you know that we gave a presentation to our professional peers of certified diabetes educators at the annual diabetes educators conference this past August.  What you don’t know is what we actually presented on.  Stay with me for this journey!

Fly “ORANGE WILL”

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November 16, 2010

I have to be honest. I was not particularly excited with the choice of ORANGE as a color to represent women with diabetes … mostly because I look “sickly” in orange … unlike Brandy who glows when she is wearing orange.  But my thinking changed when I remembered that ORANGE is the color of my favorite Monarch Butterflies.

Turning Back the Clock

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November 6, 2010

Claire mentioned in her post about Yin and Yang.  Based in Chinese medicine, Yin and Yang represent “hot” and “cold”.  I actually prefer using Ying when I speak of creating balance (Yi from Yin and ng from Yang).  If you mix the 2, you get warmth. The C3 sisters are the combination of Yin and Yang. We equal warmth, not only for ourselves, but for each other and others who also have diabetes. Life with diabetes has not been easy.  If you have been following the 3 of us since we started blogging, you know that each one of us has had a different experience that makes our story and us truly unique.  You also know that we also have some similarities to our stories.

Memoirs of My Diary

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October 28, 2010

So, what do you do when diabetes sits in for the LONG HAUL . . . When you’ve seen the old and the new, recycled a few times over? Don’t get me wrong. I love my pump . . . and my PING meter remote makes life a lot easier, but it’s still an insulin delivery system! Continuous glucose monitoring helps, but it’s simply another way to monitor blood glucose.

At the time of my diagnosis, I remember hearing that an implantable “artificial pancreas” would be available within 5 years, and thinking to myself “I can handle diabetes for 5 years” . . . Now, more than 32 years later I still have diabetes and there is NO implantable pump.

Several years ago as I was cleaning out our attic, I pulled out my high school diary to confirm the date of my diagnosis, and was surprised to find only a brief and somewhat humorous entry regarding my stay in the hospital  . . . with “gratitude” for my needles . . . followed by a long and significant gap in entry of nearly 8 months. Then, as though nothing had happened, the entries picked up again, with upbeat, sugary, pleasantries . . . and absolutely no mention of diabetes . . . As if in total denial of those painful lonely days and nights when I cried myself to sleep, believing death would be a better alternative to the physical and emotional pain, fatigue, and disappointment that I felt.

I learned very quickly to face diabetes in the same way I was taught to face life . . . with stoicism and non emotional detachment. But that sort of denial depletes life of JOY and leads to ANGER, numbness, and cynicism . . . turned inward. We call it “depression.”

Yin & Yang represent an alternative . . . A dynamic balance between opposite extremes on a single continuum. One half of a continuum cannot exist without the other. Yin energy is flexible. Yang energy without restraint turns to aggression. One half is neither good nor bad, but a BLEND of complementary opposites that bring balance to life. Yang qualities signify things which cause CHANGE. Yin qualities describe things that TRANSFORM. When the firmness of Yang and the flexibility of Yin are not balanced, Yin cannot give life, Yang cannot foster growth . . . and living energy ceases. You can’t have one without the other.

The complementary balance of Yin & Yang allows acceptance of what is, letting go of the need to control . . . which is something we can’t do anyway . . . , creative exploration, and surrender to the changing cycles of life.  It teaches us to laugh and cry, and find meaning in the midst of challenge . . . And, I believe that the balance of Yin & Yang allowed us C³ Sisters to find each other in that Moroccan Restaurant, in recognition of life with diabetes as a hero’s journey . . . A spiritual journey that transcends diversity of religious practice, personal beliefs, and cultural upbringing; and our common belief that diabetes has given far more than it has taken!

 

 

My Diabetes Awakening

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October 18, 2010

My dialogue with God about Awakening to Diabetes continued well into and throughout the 1980s. I mentioned that I had prayed for a healing for my diabetes to become manageable and livable. The healing for me came in the form of receiving updated diabetes self-care information and meeting a remarkable women and role model.

In 1981, after spending 3 1/2 weeks in the hospital with poorly managed diabetes after having suffered a miscarriage, I made it my business to find a doctor who knew what they were doing in treating diabetes. I went to a peer support group at the local ADA, and learned about carb counting, A1c testing, home BG monitoring, the importance of physical exercise, effects of stress on BG control, and the effects of diabetes on pregnancy. Several of the group members were involved in diabetes research projects, including the early DCCT and Diabetes and Pregnancy studies. One of the group members told me about Dr. Lois Jovanovic, who was recruiting diabetic women who wanted to get pregnant for her studies on tight control during pregnancy. She gave me the phone number to call, and very shortly after that, I was enrolled in the study.

I had heard that Dr. Lois Jovanovic was an awesome woman. Everyone who met her spoke of her with such high regard, affection and excitement. I went to NY Hospital-Cornell Medical Center to meet with her. I didn’t know what to expect, but I was expecting a serious clinical encounter with a matronly woman in a white coat. Instead I met this petite, vivacious woman with bright eyes, a big smile and a warm heart. She greeted me so warmly, and with such enthusiasm, I immediately felt right at ease with her. She introduced me to her research assistant nurse, Molly, and I had some blood work drawn. As Molly drew my blood, she accidentally pricked herself with a needle tip. She looked at Lois and said, “What should I do?”At this point in my life, I wasn’t a nurse yet, but I assumed they were talking about the potential of getting AIDS from a needle stick. As they were conferring about it, I spoke up and said, “If you are worried about my state of health, the only thing I have is type 1 diabetes and it’s not contagious”.  They stopped, looked at me, then looked at each other and burst out laughing. Lois reassured me that that they weren’t laughing at me – they were laughing with me because they both have type 1 diabetes!  With that, I was enrolled in the study and arrangements were made for me to attend the Diabetes Self-Care Program directed by Lois and her medical partner, Dr. Charles Peterson.

I spent four years under the care of Dr. Jovanovic and her various staffs. She taught me sophisticated basics of everything I know today regarding my own self-care, how I care for patients I see as a CDE, and how I relate to others with diabetes, whether as peers or patients. I dropped out of the pregnancy study after a nasty and stressful divorce, but Lois kept me involved as a participant in various other diabetes research projects going on at the time. I had early stage retinopathy in both eyes. She believed in treating complications early, as soon as they showed up, in order to preserve function and prevent further deterioration, so as part of her research, I had my eyes treated with lasers early on, and they have been “quiet” and without bleeds since 1982. She pulled me out of the DCCT because she did not want me to end up in the randomized control group. She told me “you are already doing what we are striving to prove with this study – that tight control using multiple testing and multiple daily injection, or insulin pump, therapy, reduces complications and yields better health outcomes. I don’t want you to go backwards.”

I was disappointed for her when she was passed over for a big diabetes program promotion at NYH/Cornell Medical Center, and like many of her NY patients, at a loss of what to do without her in our midst when she moved to California to continue her groundbreaking work as a researcher and top clinical expert elsewhere. Over the years, I have managed to get by without her direct influence, but I always inform the doctors and endocrine MDs that I see that I am one of her “sophisticated diabetics”. It is because of her influence on my diabetes life, that I went into nursing as a profession, with the idea of eventually becoming a diabetes educator.

 

My Secret Weapon

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October  12, 2010

Turning 50 years old this year is a big deal for me, and a milestone I am proud to announce!

I don’t know that I ever consciously thought about it, but somewhere in the back of my mind there was a belief that I would not live very long because I had diabetes . . . So the first time I met someone who had lived with diabetes for more than 30 years . . . it was an unexpected surprise!

Now, more than 32 years since the day of my diagnosis, I have to say that my beliefs about diabetes have changed a great deal.  In my most recent blog I told how at the age of 40 my health was very poor.  .  . And, in an earlier blog I told, how at the age of 26, I was in an auto accident that nearly took my life. . . But I have been waiting to tell you “the rest of the story.”

Following my auto accident in 1986 I had multiple reconstructive surgeries . . . some lasting as long as 7 and 8 hours. The prolonged exposure to latex during those surgeries contributed to my development of severe Latex Allergy that affects my ability to breath, and causes reactivity to many foods and food additives that I am no longer able to eat. My Pituitary was also damaged, and over the years its function has progressively declined . . . as the master gland of all glands, that tells most of the others what to do . . .  a lot of hormones other than insulin have to be replaced. And, as if that were not enough, we recently discovered that I have Celiac.  Needless to say, all of these conditions contribute to the challenge of managing my diabetes.  . . And it has taken a great deal of “not knowing” in order to discover answers to multiple health concerns.

Not knowing can be very uncomfortable, and can lead to a great amount of “dis-ease” and “dis-stress” as your mind goes in many directions trying to determine what will happen next . . . and in so doing it is easy to miss what is happening in the present moment .  .  . Which is, indeed, the only moment that is ours to live.

In my search for answers, I have discovered the incredible power of our minds in determining the outcome of our lives.  .  . And the incredible joy of living in the present moment. Learning to live in the present moment helped me develop a keen awareness and understanding of my body and its needs, and led to answers that have given me a new lease on life . . . as well as meaning in the midst of chaos.

So I have to THANK diabetes and other physical challenge for helping me develop the courage and skills that are necessary to transcend my physical limitations and become more than I could otherwise have been. And I truly believe that the BEST is yet to come!

“When it is dark enough, you can see the stars.”  Charles A Beard

 

 

Following Your Dreams

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September 21, 2010

My paternal grandfather, to this day, reminds me that when I was 4, I said I wanted to be a nurse.  I had a nurse named Carly when I was 4 and was hospitalized in DKA because I was sick.  She was kind, compassionate, and caring.  She obviously greatly impacted my life.  It was while I was recovering from my last surgery that I decided I wanted to achieve this dream.

I started taking classes and eventually enrolled in a LPN (licensed practical nurse) program where I graduated first in my class.  I loved helping people and every time I had a person with diabetes to care for, I instantly felt connected.  I started my quest to learn all I could about diabetes, catching up on the latest technologies and research developments.  This continued when I enrolled back in school to get my RN.  It became obvious to me during my time in nursing school and working the floor at the hospital (not sure why it took me this long based on my experiences when I was younger) that there was a lack of professionals who really understood what it was like living with diabetes, but I did not put much thought into it.  I could make a difference at the bedside, and that was great!

After Hurricane's Katrina and Rita (oops, did I fail to mention I had lived in Louisiana for 16 years), I moved back "home" (to the Berkshires) with my husband and 3 cats in tow.  It was one day at work when I had my "a - ha" moment that I NEEDED to become a CDE (this was also a WANT).  I once again felt that there was a lack of professionals who understood what it is like living with diabetes.  I pursued every opportunity at work to get my 1000 clinical hours to even be considered to sit for the credentialing exam.  During this time, I also converted my "regular" American Diabetes Association membership to a professional one and read whatever I could pertaining to diabetes.   My life was diabetes, but in a different context.  It was now about achieving this goal I had set my sights upon to HELP and SUPPORT others with the challenges of living with this chronic illness.  I also joined the American Association of Diabetes Educators.  It was in this organization that I found a place.  I also found 2 SISTERS - Claire and Connie.

I submitted my paperwork and paid the $350 fee to even find out if I would be eligible to sit for the exam.  Good news - I was eligible.  I bet those of you who have stumbled upon this blog are thinking "Geez, did she make it".  Yes I did!  June 27, 2009 was the day I took my credentialing exam to become a Certified Diabetes Educator.  The format had been changed with the spring option – the testing was now computer based, but the results would not be delivered right away (this was still be processed).  What do you mean I would have to wait up to 6 weeks to find out my results? I had studied and studied and studied some more.  This wait was agonizing!  It would be a week later that my results arrived in the mail – I PASSED!!!!!

It was during this period of time when I really made a difference in my own life with diabetes.  I started seeing a new endocrinologist in January 2007 and had decided I was ready to go back on the pump.  This decision had come with several interactions with clients I had met with as a nurse at work.  By March 2007, I was back on the pump and have not disconnected since!  Once upon a time, I used to keep my diabetes hidden.  This new venture of being a person LIVING (and living with) diabetes now encouraged me to “show it off”.  And still does.

 

 

Following Your Dreams

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September 7, 2010

As I look back on the negativity that surrounded my relationship with diabetes and my healthcare providers of earlier years . . . it is surprising to note that my A1C maintained in the 4 to 5% range . . . back in the days when I didn’t know what that meant. . . And that, in the midst of all my struggles, something important had changed. The seeds of hope, planted in my heart from the time of my inception, had begun to grow.

During those early years, my energy was focused on becoming “good enough.”  I expected far more of myself than anyone else, and as my own relentless judge, I thrived on the ability to outdo my own performance. The “high” of accomplishment was exhilarating, and it took increasingly creative feats to satisfy my addiction, and overcome the “low” that often follows in the wake of success.  . . All the while busying myself with “other” things, in an effort to bury my deepest dream and desire of becoming a Certified Diabetes Educator (CDE).

By the time of my 40th birthday I’d burned my candle at both ends for so long that my health declined to the point that my husband told me I was nothing but an invalid. Sitting in a daze, I had little energy for anything outside of work and the absolute necessities of life.  My diabetes and the numerous symptoms that ailed me became my obsession, as I looked to discover a magical “fix” with the next tweak of a basal rate.

Fortunately, I was blessed to find the support of caring healthcare providers who nurtured me along my journey, and judged me less than I judged myself. . . And because of their support, my health slowly improved, and I hoped once again to become the CDE I’d always believed I could be.  I didn’t know if my hours of work experience would qualify for the 2000 direct patient education hours that are required to write the certification exam . . . or if I had the physical endurance to face the daunting task of preparing for the exam . . . But I committed, sent in my $350.00 registration fee, and buckled down with determination to study 1 hour every day . . . for the next 6 months. Flash cards, seminars, audio recordings, the CORE Curriculum for Diabetes Educators, and memorization of Clinical Practice Recommendations . . . YES I could, and YES I did! In May of 2001 I wrote the exam and was awarded the designation of Certified Diabetes Educator.

Earning the right to follow my name with the designation of “CDE” was only the beginning, however. My journey has not been easy.  .  . Yet I have found that within the seeds of discipline and desire that it took to make those first steps towards my dream, lay everything that was needed for the next step of my journey . . .

In much the same way, the discipline that is required to live well with diabetes, can be harnessed.  And, although I do not know what your deepest most treasured dreams involve . . . I do know that dreams are possible . . . and I know that you can use diabetes as a catalyst to transform your deepest pain into your highest purpose and wildest dreams!

The Making of a Diabetes Educator

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August 31, 2010

My relationship with my mom was very strained, as it focused primarily on my diabetes.  This was something I needed to escape from since my childhood.  I was always treated differently than my older sister who did not have diabetes.  My friends’ mothers were always called before a sleep over and I always had to eat “on time”.   I had a lot of resentment and anger that I kept inside.  Who could I talk to who would understand what it was like living with this disease?

I was forced into therapy, which did not serve any purpose, as I would just sit there and not say anything.  I started seeing a new endo in high school – I think it was my sophmore year.  He was young and was a recent graduate from Joslin.  Most importantly, I felt comfortable with him and he did not chastise me.  It felt and seemed like he “got it”. What made it even better was that he did not permit my mother in the exam room!

My time for escape came when it was time to pick a college.  Thanks to divorce, my mom had no say in where I was to go.  I remember I picked schools that met 2 requirements: far from home and no snow!  Ready or not here I come!  I went to college at Tulane in New Orleans.  I had a great time, perhaps too well at some times.  I kept trying to ignore my diabetes.  I drank a lot of wine, ate poorly, and didn’t sleep enough.  I did however, go to the gym every day and exercise.  This eventually caught up with me.

A friend and I planned a 7-week trip to Europe during the summer of 1994 after I graduated college.  Unfortunately, I didn't see more of Europe than the Harley Street Clinic in London.  I had developed a urinary tract infection that extended to my kidneys. When I urinated, it was bloody.  It probably developed before I even left the U.S. and the long flight over didn't help.  It also didn't help that I wasn't taking care of myself, as mentioned above.  Shortly after this scenic tour of the clinic, I started seeing a new endocrinologist.  I was still living in New Orleans, as I really felt at home there.  Plus I didn’t have my mother watching over me.  I loved him!  He understood, listened, and HEARD me.  The best part was that his wife had diabetes and was using a pump!  Whoo who - I just won the lottery! It was due to this team that I really grew up and realized how stupid I was being in my lack of care.  It was also through this team, that I went back to therapy with a therapist I credit with saving my life.  I FINALLY found my place and worked through my resentment, anger, and any other negative emotion you can think of.

January 1st of 1996, I was hospitalized for a severe infection.  Happy New Year! It was so bad, that an infectious disease doctor was called in because no one knew what was going on.  I had gone to my endo as I wasn’t feeling well.  I had a fever of 102.1 in his office and he immediately sent me to the hospital.  By the time I got to my room, my fever was at 106.2!  Can anyone say it is hot (or cold) in here?  It would be 2 weeks later that my entire life changed and it would never be the same.  I had my first of 6 vitreous hemorrhages, 3 in the left eye, 3 in the right.  Between March and August of 1996, I had 6 surgeries.  I briefly regained the sight in my left eye over Passover in April that year as I was recovering from my 1st surgery on my right eye in the hospital.  This period of time was very difficult for me.  Recovering from the surgeries was easy except for the part when I could not lift my head and had to lie face down for 23 hours and 55 minutes per day.  I have been left blind in my left eye, but I have not let it hinder me.   Somehow, I found the strength within me to carry on.  It also helped to have support of my healthcare team, not too mention a friend who also had type 1 and had lost her sight in her left eye as well.