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C³ Sisters:   That’s us . . . Claire, Connie, & Cindi. We found each other in the midst of 4,000 diabetes educators at the 2008 American Association of Diabetes Educators Annual Meeting and Exhibition in Washington D.C.  Our connection was so unmistakable we felt some kind of “D- dar” (aka 'diabetes radar') had been at work in bringing us together.

 

Our Interest: 100 + years of “Life Lived Well with Type 1 Diabetes”

 

Important Note: We didn’t say it’s been easy.

 

As we sat over a cup of mint tea in a Moroccan Restaurant the stories of our lives spilled out and overlapped in so many ways we could finish each others sentence.  Connie could not be contained as the music flowed and a beautiful, young, and “artistically correct” belly dancer made her way through the house. As she sat on the sideline, her body moved with the intuitive grace and soul of an experienced teacher, and the young less experienced dancer invited her out on the floor.  Everyone applauded as Connie stole the show . . . all the while wearing sturdy tennis shoes to protect her worn and neuropathic diabetic feet.  It didn’t matter. She moved with grace and passion that comes from the heart! Claire watched with amazement and wonderment that she had volunteered to Chair the AADE Integrative Care Specialty Practice Group. Coming from an extremely conservative Christian background, she felt a bit out of place listening to Cindi tell stories of her work as a Diabetes Educator at Canyon Ranch.

 

How could three DiabetesSisters, from such diverse backgrounds, have so much in common?

 

That’s what we are here to share. . . But first, we want to find out how much we all have in common. We think we are onto something, but we need your help.  We need to know if our experience of life with diabetes is just a coincidence, or if others share similar experience and challenge.

 

Please take a few minutes to complete our survey . . . and tune in for more of our stories!


 

01 Aug

Feeling lucky? (Cindi)

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August 1, 2011

 

Hello everyone!  Sorry for the long absence.  A brief posting before the C3 sisters are back in action at the annual American Association of Diabetes Educators meeting. This year we are lucky enough to go to Las Vegas!  The events start tomorrow night and end Saturday.  Stay tuned to read about our adventures and other stories about our journey with type 1 diabetes

 

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21 Jun

Blue Morpho (Claire)

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June 20, 2011

She caught my eye as I walked into the butterfly house. My immediate response to capture her beauty on camera. Her up wing a none descript camouflage. Down wing a glimpse of shimmering blue. Never stopping for more than a moment. A still shot could not portray her mesmerizing, light airy freedom.

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03 May

My Guest House (Claire)

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May 2, 2011

It is Monday evening, following the 2011 DiabetesSisters Weekend for Women in Raleigh.  Nancy and I arrived home last evening around 9:30 pm. After dropping her off, I drove the remaining few miles to our home, unpacked the mere essentials, and quietly slipped off into bed.

 What an incredible weekend it was, with time for learning, reflection, connection, and tons of fun. And for those of you who saw me dance, do not hold the mistaken belief that mine is a boundless reservoir of energy.  .  . for indeed the laws of nature hold true . . . that which does go up, must come down.

In my younger years burning the candle at both ends was a way of life, and something I grew to expect of myself and others.  But those days are LONG gone, and I pay the price. This week must, of necessity, be one of rest and recuperation.  During the slump that inevitably follows a high it is easy to come down on ourselves and believe we are fools for having dreams and goals, within the confines of a body that cannot and will not do all that we wish.

My generally optimistic disposition once prompted a friend to query if I ever experienced a “low” moment.  And my quick emphatic response was “Absolutely . . . numerous times, every single day . . . but a positive attitude beats the alternative, and the choice is mine.”

Today I slept in, slowly worked my achy body through a Yoga routine, ate, took a nap, and struggled to pull myself out of bed again. The house remains a cluttered mass of gear and clothing. It’s the price I pay for a weekend of fun.  We don’t have to pretend. Being honest about our fears and limitations is not easy, but without such honesty we do become the Fool and we limit our possibilities.

 

This being human is a guest-house

Every morning a new arrival.

 

A joy, a depression, a meanness,

some momentary awareness comes

as an unexpected visitor.

 

Welcome and entertain them all!

Even if they’re a crowd of sorrows,

who violently sweep your house

empty of its furniture,

 

Still, treat each guest honorably.

He may be clearing you

out for some new delight.

 

The dark thought, the shame, the malice,

meet them at the door laughing,

and invite them in.

 

Be grateful for whoever comes,

because each has been sent

as a guide from beyond.

Rumi

 

Isn’t that what ORANGE:WILL is all about?

 

PS: Brandy is working to get pictures posted on our DiabetesSisters website, but for those of you who enjoy Facebook, you can get a sneak preview on my Facebook page. . . Friend Me with a message of ORANGE:WILL  and I’ll know you are my DiabetesSister!

 

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05 Apr

Why Didn’t Anyone Tell Me? (Connie)

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April 5, 2011

I danced barefoot for many years, starting in my early childhood, through my teen and college years and as an adult up to age 50. Even before I was diagnosed with T1DM at the age of 8, I have danced. I studied and performed ballet, modern, jazz, creative movement, afro-caribbean, belly dance and folk dances of the world. Dancing has been my fitness routine for as long as I can remember. Diabetes never got in the way of my dancing until I developed a neuropathic Charcot foot.

Living with diabetes for a long time can have a complacency effect. It happened to me with foot care. Sure I had heard the talk “Take Care of Your Feet” from various diabetes educators, MDs and ADA sponsored patient information days. You get the printed handouts and someone tells you to check your feet everyday, wear properly fitted comfortable shoes or slippers at all times, keep your feet clean and dry, trim or file your toenails straight across and don’t put lotion between your toes. But no one ever mentioned neuropathic arthropathy or Charcot foot.

In November 2004, I was teaching a belly dance class at the YWCA when my right foot buckled while demonstrating a dance combination. I unexpectedly slipped and gracefully, collapsed to the floor. Odd, I thought, where did that come from? I got up, shook myself off, looked at my foot and did not see anything that looked out of the ordinary. I did not feel any pain or soreness so I shook my foot a couple of times to release any residual trauma and continued to teach the class.

Over the next 2-3 weeks, I continued to walk, teach and work as a home care nurse as if nothing happened. I forgot about my little mishap at the YWCA and carried on with my life. My husband and I drove to Buffalo to help my mom pack up her house in Buffalo to move to Schenectady. I spent two days walking up and down stairs packing and carrying boxes to load into the van. During this time my R foot began to throb and would swell up by the end of the day. By the end of November, my R foot was swollen, red, and hot to touch with a dull, throbbing sensation of pain. My primary care MD looked at it and thought it might be a sprain, so she sent me to an orthopedic MD for x-rays. He didn’t find anything on the x-ray, said it was strained and sent me home to rest and ice it.

The foot didn’t get any better. I continued to walk on it and drive my car to see patients. It was swollen and hot. In early December my endocrinologist at the time looked at it and said it might be gout, cellulitis or something vascular, so he ordered tests to check the inflammation makers. Everything came back negative for whatever he was looking at. I went back to see the orthopedic MD for follow up and this time saw one of the doctors, Dr.W, who was familiar with me and my medical and personal history. He evaluated me more carefully, diagnosed me with tendonitis and gave me a CAM walking boot to wear to protect my foot and ankle while it healed. I wasn’t able to drive with the boot on and couldn’t do field work to see my patients in their homes, so I went out on short-term disability for 2 months. In the meantime, my teaching assistant took over the dance classes and I rested my foot. Or so I thought.

It was now March 2005. The orthopedic MD said I could start weaning myself from wearing the CAM boot and start wearing regular shoes again. He said I could go back to work after the next visit if everything looked good. One day just before I went to see him for that final check-up, I was slipping my foot into my shoe and I heard a crackle sound from the middle of my R foot.  Ooh, I thought, that doesn’t sound good. I told Dr. W about the crackling sound; he sent me for a series of x-rays and MRIs.

He called me back in two days later for another series of MRIs, then he sat me down and told me “You have an early case of Charcot arthropathy.” He said advanced stages of Charcot foot disease is a fairly common complication seen in poorly controlled diabetic feet, but he almost missed it in my case because he has never seen it in such an early stage of development. Typically Charcot foot is diagnosed when the diabetic foot has sustained considerable damage. He said it causes a collapse and deformity of the bones and muscle structures in affected feet, and when left unrecognized and untreated it causes rocker bottom deformities and can lead to amputation.

He said most likely I injured my foot, but didn’t feel any pain on the initial injury because of neuropathy. He called it Charcot neuroarthropathy and neurogenic arthropathy of the foot. Forty years of living with diabetes and I had never heard a mention of Charcot foot! I am an RN and a CDE and I had never even heard of it!

I looked it up in every medical and nursing dictionary I could get my hands on – not much information there. I looked online and educated myself on the condition and treatments by reading the research articles I found in my search. Unfortunately, most of what was written then is about end stage Charcot foot disease and how to salvage limbs. I wanted to know what can be done to prevent it, and how to recognize it in the very early stages before the devastating damage is done? As time went on, I looked in the 2006 AADE Desk reference. It has a two sentence entry on Charcot foot in an 821 plus page book on diabetes education for diabetes educators! I did my own fact gathering research.

Fortunately, Dr.W was astute enough to look deeper at what was going on with my foot and he treated me preventively. I had to be non-weight bearing for 4 months with my R foot and lower leg in a cast to keep everything in alignment in order to heal without deformity. I still have “an early Charcot foot”, but it is stable for now. I am fairly functional, but still vulnerable. I am no longer able to dance or exercise as aggressively as I had been able to before I injured my foot. I have to wear custom orthotics and sensible shoes to protect my neuropathic feet. If I had known then what I know now about Charcot neuroarthropathy in diabetes foot disease, I may not have suffered the life altering damage that I ended up with.

So, my dear sisters, when they say, “check your feet”, pay attention to the subtle changes and do not ignore anything. See a podiatrist for regular care of your feet, and immediately if you a have a red, hot swollen foot.  Wear comfortable and sensible shoes – do not trade the welfare of your feet for trendy shoe fashions. Dance barefoot at your own risk. And remember – Charcot foot process is a very real possibility for all of us who live with diabetes.

 

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30 Mar

Yogi Hoopla (Claire)

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March 30, 2011

My treat for the month has been taking a Hoop Dancing class from my delightful friend Lia . . .  who also has diabetes.  Hoop Dancing, or “hooping,” is a fun way to strengthen and tone your body and burn 450 to 600 calories per hour . . . providing you can keep your blood sugar from dropping! It is also a great way to center your mind and nourish your spirit.

If you watch closely as someone is hooping, you will notice that the body remains relatively still as the hoop is in constant motion . . . Which reminds me of the “practice” of Yoga, as an exercise in keeping your mind calm and your body centered in the midst of a sea of thoughts that incessantly vie for attention.

Not surprisingly, the practice of Yoga has been helpful to me as I am learning to hoop, in the same way that mind-body skills help you stay centered and aware in all areas of life . . . especially when it comes to the management and care of diabetes. Mind-body awareness helps you notice subtle changes that occur in your body when stress levels begin to rise; when you are hungry or satiated; when your blood sugar is rising or falling; or when your thinking is cloudy or clear.

Diabetes is more than a disorder of glucose metabolism . . . It is also an inflammatory disorder that is aggravated by high blood sugar levels, rapidly fluctuating blood sugar, and poor nutritional intake. Not surprisingly, there is an increased incidence of Frozen Shoulder (adhesive capsulitis) and other inflammatory processes in people who have diabetes . . . And they can creep in rather quickly if you are not paying attention to early signs that something is changing.

My first clues were increasing difficulty in twisting my arm behind my back to fasten my bra, and difficulty reaching into the back seat of my car. As time progressed I experienced sharp pain at times when my arm was suddenly moved or stretched, and my arm ached during the night if it was not properly positioned. Eventually the pain became so intense that I sought medical evaluation. After x-rays and referral to an Orthopedic Surgeon it was decided that I had a Frozen Shoulder, and I was given a list of exercises to help loosen the scar tissue and increase the range of motion in my arm. Talk about PAIN . . . Screaming out loud, bring tears to your eyes kind of pain. And the use of “yoga breathing” as I slowly breathed out into the pain was the only thing that allowed my muscles to relax enough to continue the stretch . . . But amazingly my arm ached a great deal less following each session, and slowly, with the use of other Yoga postures for stretching and strength I was able to regain movement. It took nearly a year to become “pain free” and nearly another to regain full range of motion.

Unfortunately, nobody told me that “Yogi Hoopla” could have kept me flexible enough to PREVENT a great deal of pain!

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