Nora's Crocodile Rockers, 2012, JDRF Walk To Cure Diabetes

Dear Family, Friends, Loved Ones, and Colleagues,

I am asking for your help. I ain't askin nobody for nothin, if I can't get it on my own.  So goes the song, but I can't get this on my own. I hope you can offer some kind of financial support to bolster the great research happening today which is bringing a cure for diabetes a bit closer. For those who are interested to know more, please read on. I have tried to help someone on the outside of the problem appreciate a bit of the reality of life with diabetes.

Nine years ago our family experienced a profound transformation. We became a family with a type 1 diabetic child. Our first child, Eleanor, was diagnosed with type 1 diabetes while she was still only two. Each day since then, each hour, has included some chore, task, reference, thought, or responsibility demanded of us by diabetes. Please do not think of this as an exaggeration, because if I err, it will be in making the demands less pressing than what they are.

And so we live. We focus on life with as much positive energy as we can. Nora does an excellent job of accepting her circumstances on most days. The rest of us do as well. Blood sugar checks number into the multi-thousands that have been endured so far. Daily shots have given way to the self enclosed delivery device called an OmniPod. This device still has to be monitored, though, and changed no less than every three days. This involves having a spring loaded needle inject the delivery line under the skin. It hurts. The insulin that we have put into the pod then gets gradually delivered into the blood as programming suggests. Who programs it? We do. The programming is based on experience and ever-changing needs of the user. Nothing is automatic; not really.

And so we plan. After nine years we are getting pretty proficient with our knowledge of food and its various carbohydrate counts. Nora gives herself more insulin, called a bolus, whenever she eats. This is based on the carbohydrates in the food. Again, formulas are used, but life is inexact. We still practice a refined form of guess work when needed. When the birthday parties, sleepovers, field trips, celebration dinners, etc. arise, we try our best to plan for it, or at least react well to what is being offered. Nora is growing and changing, and her insulin demands continue to change accordingly. She has completed a kids’ triathlon, and she wants to do more, proving that her limits are still far on the horizon.She has chosen to play cello now in the school orchestra, so her fingers, the parts she uses for checking BG, will endure more stress.


And we educate. Nora is another year older, and we all are slightly wiser. Still we find ourselves dealing frequently with misconceptions and ignorance about diabetes. Since Nora’s pod is sometimes visible she gets asked about it. She explains the situation quite well, but I wonder when she might get sick of saying it all. Well meaning people, both family and friends alike, still make comments that amaze me. Recently we were asked again if it is OK for Nora to have chocolate. I have heard someone telling another that she is not allowed to eat sugar. Others persist in these outdated assumptions that come from times when diabetes was not understood well, and its management tools were severely limited. I was happy to help my friend, Lizmari Collazo, again this year in promoting the Diabetes Ice Cream Social, just to combat some of those outdated ideas.

And we hope. Our lives are woven with the demands of type 1 diabetes. But the reason we ask for help and support is because we hope for a day when we can let go of that part of life. We hope to leave behind our diabetic lifestyle one day soon. Please help us to reach that important goal.

We are walking again this year on October 6th at Military Park, Indianapolis. The Walk for a Cure is a great day to bring together hundreds of people in one place to support JDRF and its efforts fund research. If you wish to donate, you can do so online by following the links I have listed below. You may also write a check payable to JDRF. Any size of donation is useful and appreciated, and all are tax deductible.

Please visit my walk fundraising page at the following link. This will allow you to make an online donation if you should choose to do so. Of course, it would be very exciting and helpful if you would want to join our walk team. Information is also at this link:

http://www2.jdrf.org/site/TR/Walk-IN/Chapter-IndianaState4195?px=1434058&pg=personal&fr_id=1900

We are hoping to do well for Nora’s team this year.  Thanks for your time in reading this. You are part of the cure.

http://www2.jdrf.org/site/PageServer?pagename=walk_homepage

Sincerely,
Andy Blythe,
Nora’s Crocodile Rockers, 2012

The Invisible Chimp

My daughter has had type 1 diabetes since just before she turned three. She will be in high school next year. I have learned about diabetes in the last decade like no other topic before. My former wife has learned more than I because she is usually the one around giving treatments and making observations.

I have become an in-house diabetes liaison in my school, partnered with our nurse. It's incredible to learn of all of the different levels of understanding and competency surrounding those afflicted with this disorder. Misunderstandings almost always must be dealt with before effective treatments will be used. Mishandling diabetes can be fatal, and yet a shocking number of people are not handling themselves or their condition correctly, or even with regularity.

We had been living with the insulin pump for about three years, then moved on to the OmniPod, and it makes things easier to be sure. What a brilliant use of technology! We have participated many times in the Walk to Cure Diabetes. This is sponsored by JDRF, the Juvenile Diabetes Research Foundation, and many other big organizations. Indianapolis is a great city when it comes to hosting wonderful events. Something is going on nearly every weekend while the weather allows for it. The walk this year is set to start at Military Park. I hope the fundraising event will be the most successful yet. JDRF also manages an auction each year that has been held at the Colts training complex. Everyone seems to have a special charity or cause that needs your support, but this is the biggest one for me. (You can learn more, or make a donation at www.jdrf.org.)

There's never a break from the concerns and demands of diabetes. You know how ducklings will imprint and follow around the first living thing they see? Imagine that an invisible chimpanzee had imprinted onto you. It would follow you everywhere, and you have no choice but to accept its needy presence. However, other people would not recognize or see it. They would never suspect anything to be amiss until maybe one day the chimp decided to ride on your back. How frustrated and tired you would be! You would know how to manage the chimp through many training techniques, but ultimately this invisible rider will still do unexpected and harmful things to you. You can bring it back under control, but you are never allowed to ignore it. This invisible companion will seize your attention by force if need be.

People often diminish the critical nature of diabetes. They say it is only something that means you need to watch what you eat. They assume the old wisdom about eating "sugar" still holds true. But few realize that it is potentially fatal if not managed properly and constantly. Other folks speak with me about it and wonder why my daughter can't just take an "insulin pill" like their uncle takes. First, insulin doesn't exist as a pill, and second, those who take pills are dealing with type 2 diabetes, not type 1. Insulin is broken down by stomach acids and rendered useless by the body. It must be delivered directly into the bloodstream. No choices. The new inhaled insulin system is not very reliable when it comes to delivering specific dosages of insulin.

I don't know if anyone will read this. I just started doing the blog mostly for myself, because I know that it helps to get some of these monologues out of my head. Most people in my circle of influence understand these issues. The folks who drift in and out, they are the ones I wish could read this one day and begin to understand.

Above all I want there to be a cure for type 1 diabetes. I want my daughter at some point to be able to do some of the things that kids should be able to do. Eat a pound of Halloween candy all in one sitting. Find out how much pizza is too much. Swim all day long if it suits you. She really can do this now. What I mean is for her to do it all without the intervention measures that must go along with it. Ironically she is probably living a healthier life because of diabetes.

As a father you wonder constantly about doing the right thing. Try as I might, this thing is beyond any real control or influence of mine. I can be the best provider, the most wise adviser, the funniest jokester, and the most caring role model ever, and this obtuse intruder into the family can still ruin it all. I want a cure, and I want it now.