The Book I Did Write

So I didn’t write the Great American Diabetes Narrative, nope.  But what I dreamed of doing was offering a clear instruction manual on how to manage your own health with diabetes — the kind of book I certainly could have used but couldn’t find when I was diagnosed.

Author James Hirsch writes of a growing divide between diabetic haves and have-nots — a world in which “an elite corps of highly motivated, educated, and financially secure (patients) are flourishing… compared to the nearly 90 percent (of diabetics in America) who fail to meet basic goals for blood glucose, blood pressure, and cholesterol levels.”

I realize, with a striking sense of guilt, that I belong to the first group.  But how can patients like myself use their skills and resources to reach out and help “the other half”? 

Lucky for me, I ran into Dr. Richard Jackson, who’s spent two-and-a-half decades at the Joslin Diabetes Center in Boston working with the 90 percent.  A sickening number of patients already have developed diabetic complications by the time they manage to visit the Joslin.  This damage is avoidable.  If only these people had gained a better sense of how to manage their health early on…

Light bulb on!  He, as the experienced clinician, and I, as the down-to-Earth “voice of the patient” Light_bulb reporter, might just be the perfect pair to put together the kind of hands-on guide that teaches people the basics, and hopefully motivates them at the same time.  A major premise of the book is that YOUR ACTIONS MATTER, NOT JUST YOUR DOCTOR’S.  We over-achieving Type 1s take this for granted.  But inertia – by both doctors and patients — is a huge contributor to the growing instance of diabetic complications in this country. 

This is shocking in itself, btw.  Research shows that with today’s advanced treatment options, complications to the eyes, heart, nerves, and kidneys can be greatly minimized, if not avoided altogether, yet “their incidence is only growing,” Hirsch reports.  How can this be?

A combination of flaws in the healthcare system and misinformation/lack of education is at work.  InLinnen_blue_1 his book, Hirsch tells the story of diabetes advocate Florene Linnen, whose black community in Georgetown County, South Carolina, is literally being wiped out by diabetes.  Amputations, blindness, and death are rampant.  Yet no medical professional has ever explained the seriousness of the disease to them.  When Linnen’s own mother was diagnosed, the nurse simply mentioned that her blood sugar was “just a little high.”  “How high?” asked Linnen.  382, it turns out!!  Allowed to go on like this, Linnen’s mother would have been next in line for amputations, blindness, and death.

Only by educating herself about the health risks and critical diagnostic tests did Linnen pull herself out of the abyss: she was over 200 pounds, exhausted and achy when she first decided to take a stand.

Our aim is to help people like Linnen.  Apparently when she first attended a diabetes workshop in 1997, a speaker asked, “What were your numbers the last time you saw your doctor?”  Linnen had no idea what he was even talking about, Hirsch reports.

Hard to believe that despite having had diabetes for 14 years (since 1983), no one had briefed her on the 5 essential health tests: A1c, lipids, blood pressure, microalbumin, and eye exam.  How can you manage your health when you have no idea where your health even stands?!  Know Your Numbers, Outlive Your Diabetes may just be the best $11 ever invested on a person with diabetes.  That is Our Great Hope, anyway.


12 Responses

  1. Bernard Farrell
    Bernard Farrell November 28, 2006 at 8:00 am | | Reply

    Congrats Amy

    I met with Richard Jackson many years ago during a DoIT program at Joslin, what a great doctor.

    I’ll check the book out.

  2. Kevin
    Kevin November 28, 2006 at 8:05 am | | Reply

    This looks great Amy.
    Way to go!

    Thanks for doing all you do. I’m a faithful reader on your blog and look forward to reading your book too.

  3. Cindy
    Cindy November 28, 2006 at 9:51 am | | Reply

    Being new to this and working to understand everything I need to know, I can relate to how overwhelming all of this can be. I, too, am fortunate that I can access information from other sources and have been able to educate myself in addition to Endo and CDE. I have been thinking of asking my endo’s office if they have considered some type of diabetic sponsorship…where newly diagnosed diabetics can contact an “experienced” diabetic for support. Not medical advice of course, but emotional support along with personal experience and guidance for all the little things the docs don’t tell you. I think having someone that you could talk to especially in the beginning can provide encouragement and understanding that you can’t get at a doctor visit. Also during those times of inevitable burnout, you would have an understanding ear and probably a gentle kick in the pants. I don’t know….just my two cents. If my Endo’s office had this….I would volunteer to help out.

  4. joan
    joan November 28, 2006 at 10:11 am | | Reply

    To Cindy -
    I read your comment about “diabetic sponsorship” and I am thrilled to tell you that here in San Diego under the umbrella of the Behavioral Diabetes Institute founded and directed by Bill Polonsky, Ph.D., CDE, we are in the beginning stages of designing a diabetes mentoring program to fulfill the need that you so eloquently described in your comment. This will be one-on-one connection between individuals living successfully with diabetes and those who are newly diagnosed and/or struggling. Please contact me if you want to be involved.

  5. Jo's Cafe
    Jo's Cafe November 28, 2006 at 3:49 pm | | Reply

    Specials of the Day 11/29

    Specials of the Day for 11/29

  6. Jo's Cafe
    Jo's Cafe November 28, 2006 at 3:49 pm | | Reply

    Specials of the Day 11/29

    Specials of the Day for 11/29

  7. Jo's Cafe
    Jo's Cafe November 28, 2006 at 3:49 pm | | Reply

    Specials of the Day 11/29

    Specials of the Day for 11/29

  8. No name
    No name November 28, 2006 at 4:44 pm | | Reply

    >If only these people had gained a better sense of
    >how to manage their health early on…

    That sounds dangerously close to blaming the patient to me! What, like having a good sense of how to manage translates into good control?

    Tools weren’t always what they are now, Amy. Back before basal/bolus regimes, R was the best anyone had, and NPH had (has!) an insane absorption variability. Somedays, you could inject 10 units and get 10 units worth… other days, you’d inject 10 units and get 6 units worth (and different peaks each day), setting you up for blood sugar chaos, even if you knew the theory cold.

    Even the DCCT folks in the intensively treated group could only average an A1c of 7 back then. That means that HALF of patients couldn’t meet target — despite having the most aggressive care and follow up schedules with endos, nurses, dieticians, psychologists, etc., and the best technology of the day (including insulin pumps).

  9. Scott K. Johnson
    Scott K. Johnson November 28, 2006 at 10:04 pm | | Reply

    Very cool Amy!

    I think it’s a great idea, and will fill a need out there.

    Way to go!

  10. Scott
    Scott November 29, 2006 at 6:09 am | | Reply

    The problem you describe is indeed multi-faceted (sp?), but the solutions are hardly simple. Our healthcare system is a HUGE contributor, as the number of employed persons without healthcare continues to grow. My biggest gripe is the cost of testing supplies, most of which are manufactured in China for pennies on the dollar yet retail for outlandish sums of money. dLife has contributed a great deal with its “test, don’t guess” message, but the cost of testing supplies remains a sore point. At one time, a generic strip manufacturer named Inverness Medical existed until a few years ago, but the FTC turned a blind eye to reduction in true competition by allowing giant Johnson & Johnson Lifescan to acquire the company in 2001.

    However, an equally important contributor lies within the medical profession. There are countless doctors (many of whom are general practitioners or family doctors) who have not taken any continuing medical education (CME) credits since graduating from med school — decades ago. Many react just as you describe, with hardly urgent statements like “your blood glucose is a LITTLE on the high side (382 mg/dL)”. While that comes from not wanting to alarm patients, the fact is that these patients need to be alarmed!

    I am optimistic that since the Federal government will be picking up the cost of drugs via the new Medicare Drug Benefit, that the costs will soon receive greater public scrutiny since U.S. taxpayers will be assuming a greater portion of these costs. However, the medical profession, and particularly the ADA should be dedicating more time and effort towards investigating these issues, and instead, their priority seems focused mainly on prevention of type 2, in spite of their poor historical track record in this area, and the fact that the CDC and the NIH/NIDDK are already dedicating significant funds and efforts towards this as a priority. Why not refocus the ADA’s prorities towards areas not receiving sufficient attention rather than duplicating efforts sponsored by the CDC and NIH? Now, if only the ADA would listen!

  11. InsureBlog
    InsureBlog December 5, 2006 at 10:29 am | | Reply

    Grand Rounds

    From the Fellow Blogger Makes Good file: Diabetes Mine blogress Amy Tenderich has published a guide for diabetics, aimed at helping them manage their care. Mazel Tov, Amy!

  12. Kim
    Kim December 6, 2006 at 9:41 am | | Reply

    Last week we buried my brother-in-law at the age of 52, a diabetic since the age of two who suffered every complication known to man (except blindness)

    He had been on dialysis for eight months. Amputations were around the corner, without question.

    He didn’t have the tools we have today for the majority of his life, this is true.

    But we have them now. And that is why this book is so important.

    Patients today need to be educated, as well as their doctors, and the seriousness of the illness along with the importance of control drilled into every new diabetic who is diagnosed.

    It’s never too late to learn more and be more pro-active, no matter when you were diagnosed.

    My copy is on the way via right now.

    Kudos for writing and congratulations on being published!

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