Thursday, February 17, 2011

Back to the Mission

The Diabetes Online Community (DOC) had a #DSMA chat recently on Twitter about exercise and that has gotten me back to this blog after too long a hiatus.  So thank you one and all at the DOC.

I'm back to the mission of figuring out how to overcome exercise resistance.  I work two part-time jobs everyday and that's been an excuse for not exercising consistently, although I do chair exercises with seniors at least 3 times per week and try to get them to exercise 5 times per week.  I miss walking with my dog and taking pictures and having a goal so that's the plan to initiate again.

BBL after work.

Thursday, October 7, 2010

#NoDDay

1.  I majored in cultural anthropology in college and loved learning about people around the world.
2.  During one year in college, I lived in an International Friendship House
3.  I spent one year in college in Jerusalem, Israel - a magical city and would like to live there someday.
4.  I started on my MSW graduate degree on my 49th birthday and a friend brought flowers to the classroom.
5.  I work as an activities director in a senior daycare center and adore the clients  - who share wisdom, joy of life and so much more.
6.  I am blessed with many magnificent friends who care about things that are real and important, and are making a difference in the world each and every day.
7.  I have a brother who is an angel on earth - a loving soul who is gentle and kind.
8.  I appreciate nature, flowers, the breeze, the sky, the trees, the rain, the birds.....
9.  I have a husband who is loving and supportive, and we have 2 "fantabulous" children.
10.  I am grateful.

Wednesday, September 1, 2010

Diabetes Art Day - One Mother's Journey

Thanks to Lee Ann Thill at The Butter Compartment , September 1, 2010 is Diabetes Art Day (see her blog post here).  Lee Ann continues to inspire me to try various types of art - and with limited time, I decided to cut some pictures, words and phrases from a couple of magazines that reflects my journey of being a mother of a child with type 1 diabetes, for 21 of his now 22 years.

A plethora of emotions needed to be captured but given the time constraints to get it done, only some of my feelings about this journey of mothering a child with type 1 diabetes are reflected in the collage.  You'll probably have to click on the photo to see it in its entirety.



Initially I wanted to try to create it without any words - but words are important to me and there were phrases that jumped out of the magazine pages that insisted on being on the canvas.  So it's a combination of pictures, words, and phrases from magazines, photos from the family, and a few of the myriad of objects involved in day to day care of diabetes.

The bottom and sides describe the more difficult times - especially in the beginning...."Fear of Being Hurt" refers to my son's fear of being hurt by us as we lanced his 15 month old fingers numerous times per day, and injected him with insulin 2x per day starting in 1989.  Dropping refers to blood glucose levels dropping.  One drop changes everything reminded me of being so worried about him on the monkey bars in the park - and what if his blood sugar dropped and he would come tumbling down....worry, tough and life was turned upside down by the diagnosis.  I was responsible for his life 24/7/365 with a medical condition I knew nothing about prior to his diagnosis.  Above the words "fear of being hurt" you see an insulin pump infusion catheter - we put that needle in him every few days (starting at age 7) and withdrew the needle and left just the Teflon catheter under the skin.  He hated the insertion but much prefers using an insulin pump over multiple daily injections.

Other objects on the canvas are a syringe (we used 2 per day for 6 yrs).  A lancet device, a lancet (we lanced our son's fingers approximately 6x per day since 1989 to draw a drop of blood to check blood glucose level). Emla cream which is to numb the skin before inserting an insulin pump infusion set.  Humalog insulin wrapped in a Band-aid as insulin is not a cure but it keeps our son alive.  A glucose meter. And some tubing that connects the insulin pump to the infusion set so the insulin goes into his body 24/7/365.  And the red box is a Glucagon Emergency Kit so if our child has a seizure as a result of a very low blood sugar, we would have to reconstitute the glucagon powder inside with the sterile solution in a syringe in the case, and inject a very large needle into him in order to force his liver to release stored glycogen and raise his blood glucose level enough to bring him back to consciousness.  My husband injected our son with it one time when our son was 2 years old and had a hypoglycemic seizure.  I still recall the look of sheer terror in our son's eyes during that seizure.

On the left side there are the words "wow that was embarrassing".  I recall being at a support group and didn't have glucose tablets on me although we had some in the car.  Until that point I talked myself into believing my son will be fine as long as we follow the rules, and he wouldn't be vulnerable...but I learned at that meeting how wrong I was with respect to vulnerability.

Further up the left you see the words "playing favorites".  I always worried my very precious daughter felt second best because so often the diabetes came first.  I never would have chosen to parent that way but with a 2 yr old with type 1 diabetes, and a new born, I was always torn when both were unhappy and had to attend to my son worried his blood sugar was dropping too low.  The Hello Kitty was colored by my daughter and I want her to know she always brightens up our lives with her creativity.  The pictures of pulling, and sitting and reading - reflect my guilt and wonder if I spent enough time attending to her needs and does she know how much I love her?  And that I consider her a divine gift to our family because she brought balance and joy during a time that was so stressful.

On the right moving from bottom to top - the "Hi I'm new here" "Diabetes Research Institute" and "I need a hug too" is reminiscent of our family attending a support group led by Barbara Singer of the DRI in South Miami where I met other families also raising children with diabetes. Our family continues to be involved with the DRI. It was the "hug" and connection I desperately needed.  "Critics", "mirage", "DON'T", "Doctor's orders" ,"Chance"...so much pressure to do what was right - but what was right with a disease that has no true formula?

Going up further on the left and heading to the top shows the growth through the years....I no longer feel helpless, in fact I feel empowered to advocate for others, to push on, to make a difference, to work hard, to raise awareness of the need to cure diabetes, to live a fulfilled life, to trust my instincts, to be gentle with myself and others, to volunteer as the Vice President of the Children with Diabetes Foundation and work with others to select grants for promising and cutting edge research to change the course of diabetes.

Eyes, clocks, a mother juggling while on a unicycle, food, family, images of raising children, cartoons...where has the time gone? The picture at the bottom of a mother driving reflects our family growing up. Now both children are away at university, life is very good and I am so very grateful. The rest is more likely self-explanatory.  Feel free to ask me any questions.

Thanks for looking.

And please support a cure for diabetes.

With love,
Ellen

Wednesday, April 21, 2010

21 Simple Things You Can Do to Help Someone with Diabetes - Book Review

Welcome to my first blog book review.  For those of you who do not know me, I have a passion for all things diabetes.  My now 22 year old son was diagnosed with type 1 diabetes 21 years ago.  I am the Vice President of the Children with Diabetes Foundation - an organization that funds cure focused research to ultimately cure and prevent type 1 diabetes; have been an advocate for persons with diabetes for (gulp) 2 decades :-); volunteer on the PEP (Parents empowering Parents) Squad at the Diabetes Research Institute Foundation; work for Close Concerns - a company that reports on diabetes and obesity pharmaceuticals and devices; search the web numerous times per day to find and share news and research about diabetes on Facebook, Twitter, and the Children with Diabetes forums; and wear a few other hats. So that's a little about my interest/background re diabetes.  You can follow me on Twitter @CureT1Diabetes.

21 SIMPLE THINGS YOU CAN DO TO HELP SOMEONE WITH DIABETES 
BY CHERIE BURBACH


21 Simple Things You Can Do To Help Someone With Diabetes


This book is:
* a source of encouragement
* a prompt for education
* a starting guide to diabetic etiquette

This book is not:
* a medical reference book
* a substitute for a nurse, doctor, or other medical professional



Cherie has written a little gem of a book.  This is a very fast MUST read for anyone who has a  loved one, friend, coworker, in-law, relative, student,  athlete, dancer, musician.....with type 1 diabetes. The book primarily focuses on supporting a person with type 1 diabetes although some of the information certainly applies to anyone with diabetes. The fact that this book is only 80 pages is a plus - because the very people who NEED to read this book the most, may have resisted learning what they need to know about being supportive and non-judgmental, and will easily be able to absorb the information therein. It is also good for those who have not known how to ask the best way to support someone.  Not everyone feels comfortable asking - and this book can put the reader at ease and open the door for some wonderful conversation. And if you are a person who has diabetes and has not known how to ask for help, reading this book may make it easier for you to take those first steps to reach out for the support you want/need/deserve.

Over the years I've run into countless people who think they understand/know "diabetes" from what they've read, heard on the news, what has happened to their grandparents or friend's grandparents, or what they've seen in the hospital.  I urge you to STOP and leave those experiences behind and open this book with a fresh and clear mind for a new perspective.  By reading this book, you will learn what NOT to say as well as what IS kind and supportive and correct to say to the person who lives with/has diabetes.

Cherie writes with heartfelt emotion about the impact of people's words.  It may be difficult to acknowledge some of the things the reader may have said in the past, however the purpose of this book is not to berate, but rather to empower and move forward.  Her points are well made.

From the introduction: "My hope with this book is to get you the information you need to be the very best friend to your diabetic pal."  Cherie Burbach did just that by opening the door, providing just the right amount of information without overwhelming the reader, and enhancing relationships as a result of her words.


You may purchase the book from Amazon.com here: 21 Simple Things You Can Do To Help Someone With Diabetes.  I'll be sharing my copy with some friends and relatives who even after 21 years, still have no clue but may finally be open to getting one. 


Learn more about Cherie here: http://cherieblogs.com/

(For her next edition, I would like to see Cherie distinguish between types of diabetes).


Ellen

p.s. For Diabetes Etiquette Cards for People who Don't Have Diabetes - click here: http://behavioraldiabetesinstitute.org/downloads/Etiquette-Card.pdf

Monday, February 15, 2010

Bursting with Enthusiasm - a New Measurable and Achievable Goal

I've been walking but not with consistency that feels fabulous.  So my new goal for the next 4 weeks is to walk 5 out of 7 days per week and to keep track of it.  I truly LOVE walking - it feels splendid, the weather is perfect in south Florida this time of year and there is beauty in abundance all around.  The iPhone is also a companion when walking - it's the first thing I grab before walking out the door.  I recently downloaded the shakshuka app to listen to Israel radio live.  It's almost surreal to walk in the USA and tune in...surreal in a wonderful way.

Of course, I love taking pics everywhere. And, had I not walked the dog this morning with a friend, I would have missed the amazing pomegranate fruit bursting open on my next door neighbor's tree.  This picture really captures my essence today - sunny disposition, bursting with enthusiasm to set  a new goal and  feel filled with life.  The first picture was taken with my iPhone.  The others with a Panasonic Lumix.










And a blossom on the tree.


There is also a Jewish connection with the seeds in the fruit and doing good deeds ("mitzvot").  A month from now I will be in Washington DC speaking at an FDA panel meeting representing patients/patients' families and their experiences with home blood glucose monitoring.  We need improved accuracy with those meters and the voice I can provide, feels like a very good deed.

The progress with the goal I last mentioned on the blog, eating mindfully, is a bit more vague. Perhaps I need to more clearly define how I can measure its success.  However, my refrigerator is filled with wondrous  produce, as is my counter, and I've been cooking delicious and healthy foods - so that's another plus in having an increased awareness about my vision for ultimate health and wellness.  I made a chayote squash dish a few nights ago.  Yesterday I made shakshuka which was fabulous.  And last night steamed some baby bok choy.  Wondering how I'll cook this squash today....any suggestions?



Keeping track of walking - Day 1 of 7 - walked 2.2 miles in the morning.

Saturday, January 23, 2010

Catching Up - With Gusto

 Faith in oneself is the best and safest course Michelangelo


A few sky pictures from Marco Island








Thinking there's not much going on that's fascinating gets in my way of blogging.  The truth is I've been feeling wonderful and exercising and taking really good care of myself and pursuing some new goals.
Thanks to a dear friend, who is also a Professional Coach, I am now enrolled in a course to become a Certified Wellness Coach through a very reputable program that is recognized by the American College of Sports Medicine.

Have you ever sat and read a manual and materials for a course that absolutely speak to your essence and philosophy in life?  This is what I'm experiencing with the course work.  And through the journey of learning, comes the very magnificent benefit of exploring a vision of wellness along with defining clear and achievable short and long term goals for myself.  Towards the end of  the very first class, the instructor asked for a student to offer to be the client while the instructor would be the coach. I enthusiastically volunteered and allowed the class to hear how part of an initial wellness coaching session may play out.  WOW.  Some of the exercises included breathing, envisioning, recalling successes, and setting some clearly defined goals for the following week which when combined, were nothing short of extraordinary for me. I thought about things I hadn't thought of in more than a decade or two which evoked wonderful memories.  It was palpable.  I set three goals at the end of the brief session: (1) to visualize going to the gym before getting out of bed in the morning; (2) to schedule a session at the gym to begin to learn how to use the exercise equipment (recall I joined in November); & (3) to blog about it.



So when class was over I immediately phoned  and scheduled my first session to learn to use the equipment at the gym for the next day.  The next morning I visualized going to the gym before getting out of bed.  And now, a little over 2 weeks later, I'm getting around to blogging about it. I have been to two scheduled sessions using 2/3 of the machines at the gym.  I have visualized going to the gym a few times before getting out of bed. So although not every goal was achieved immediately - I knew that these were doable and they are beginning to feel comfortably incorporated into my life.



Additionally, each time after leaving the gym, I have come home and walked the dog - and then jogged a bit with the dog.  I had not even attempted to jog in decades, so this is very special.  Two nights ago I walked her for 2.2 miles with a friend; then when alone with the dog - we alternated jogging/walking a block at a time for another 2.2 miles.  Not only is it a challenge for me to jog, but it's also a challenge to get the very excited dog not to gallop.  She's learning to keep pace.  36 hours later - I feel muscles in my thighs that had not been felt in a very long time.

Another night I ran and errand and took my dog with me.  On the spur of the moment I phoned my mother and asked if she'd like to walk along Ocean Blvd and the three of us walked a couple of miles in the moonlight.  Here's my dog on the way home (she LOVES to go for car rides).  BTW, that's a street lamp, not the moon, in the picture.  There was a very slim crescent moon that evening.



I have also continued to take pictures when I am outside.  It is amazing how magnificent the sky can be when facing different directions even just on the circle where I live.  I've discovered many of my neighbors' flowers up close too.  I'm grateful to be able to observe and appreciate nature.

Here are a few photos until next time....





















And a few from inside a flower shop













And outside Whole Foods





I'll be back soon with another update - going to exercise the mind and body.

Sunday, December 27, 2009

126 and then some

I walked 2.2 miles this evening with my dog so I passed the 126 miles goal.  Now to decided whether or not to keep track of miles walked or just do it.....hmmmmm