PREFACE and OVERVIEW
“I wish I didn’t have diabetes.”
Anna R., age 7, Type 1 diabetes since she was 4
and could not even pronounce the word diabetes
As of early 2013, I’ve had Type 1 diabetes for just over 48 years (that’s over 17,545 days and over 138,700 shots, plus infusion sites and CGMS sensors and finger sticks and over 100,000 meals and snacks). That’s a whole lot of poking and jabbing and juggling and balancing.
Being a diabetic is a 24/7 deal … and it never takes a vacation. But just saying 24/7 doesn’t begin to convey the constant nature of this disease.
It is truly 24 hours a day, every hour, 7 days a week, every day, minute by minute. I am continually monitoring:
- how I am feeling,
- how much or if my blood glucose is rising or falling,
- when and what I am eating or going to eat,
- when and how intensely I am exercising
- how stressed I am,
- my blood glucose level if I am going to be driving or if I am having a sick day.
Having diabetes is omnipresent, ever changing and requires relentless vigilance. Then there is the added time needed for:
- ordering prescriptions and supplies,
- making and going to doctors’ appointments,
- handling interminable calls to correct insurance issues.
Plus there is the attention required to interact with:
- family members,
- co-workers and bosses and customers.
Some days are easier, some are harder, and some are downright impossible. Control is a big word in our world, as are carbs, blood glucose management, HbA1c, pumps, and CGMS. Definitions and more about all this later in the book.
Far from being the “perfect” diabetic, I’m doing okay and I am surviving and living my life. And I’ve learned a lot from every experience. I hope some of my insights will help you to:
- live well and in balance with diabetes,
- survive the medical system as a diabetic,
- feel validated in your emotions and feelings,
- support someone who has diabetes,
- provide medical care for someone with diabetes.
This is one of my favorite cartoons by Russell Myers, who kindly found this in his archives
(from April 26, 1976) and gave me permission to share with you.
Going forward, you will find helpful planning and communication tips, tools, and techniques to juggle situations that make you feel out of control. This is a compilation of my experiences as well as input from an amazing group of friends with diabetes (and their spouses and friends) as well as wonderful blogs and bulletin boards to learn just what works (or doesn’t work) when faced with hospitalization, laboratories, doctors’ offices, travel, pregnancy, and other life surprises.
These tools to help you plan and survive the system as a diabetic include:
- Worksheets to keep your history, your medications, and your schedule of how you take your meds.
- Tools for choosing the best doctors for you.
- Suggestions on how to:
- interact with doctors’ office staff,
- interact with laboratory personnel and x-ray/imaging technicians,
- get the most from your hospital staff (nurses, dieticians, doctors),
- manage your insulin pump and CGMS in the hospital,
- What you’ll need during a hospital stay,
- Travel tips,
- Thoughts about pregnancy and babies,
- Ideas about support and relationships and coping,
- A place set aside for venting your feelings.
If you are new to diabetes (or trying to understand it to be a better advocate to someone you care about), check out the chapter on Technical & Medical Details. If you are a pro (medical or long timer with diabetes) you might just want to skip through that.
I hope this book is helpful to you. If you have additional tips, drop me a line. I’d love to add them to my next edition.
Here’s to staying healthy, successful and in control.