Friday, May 02, 2008

5 More Things You Won't Find in a Book

Elizabeth Edelman tagged me for this meme, but I've been really busy and didn't even want to deal with this yesterday, but must admit that I gave in anyway because over the last 32 years, I've learned more from my experience and unpublished works than I ever did (and likely ever will) from any book.

Five Most Important Pieces of Advice ... You Won't Find in a Book!

Post five of the most helpful pieces of diabetes management advice on your blog.

Link to this Wikibetes entry where we will be tallying up all of the great advice. You are welcome to add your advice directly.

Tag 5 bloggers by leaving a comment on their blog.

My Five:

1) Always remember: its only a number, NOT a report card! This applies to meter readings as well as HbA1c results. Use these numbers, but don't interpret them as a reflection of your personal accomplishment or lack thereof. Use the number to guide your next action, but don't think of it as a reflection of something you did or didn't do correctly, only as a guide to help you decide what you might need to do next. Parents of kids with diabetes need to remember this rule especially!

2) Its perfectly acceptable to "fire" your endocrinologist or CDE for bad performance, and more people probably SHOULD do this. For a moment, forget about a shortage of these diabetes professionals, and realize that if your endocrinologist or CDE is not helping you, blaming you, or when you leave your appointments with them you're feeling frustrated or depressed, then think about whether this is due to the way these professionals make you feel. Next time, tell them about how their interaction with you is making you feel, and if they don't respond (or respond negatively), use Donald Trump's signature line: "You're fired!" (and, tell them not to even THINK about billing you for that appointment). You should leave your appointments feeling empowered and positive -- its their job to make sure that's what happens!

3) Carbs. Forget about the official, ever-changing position of the American Diabetes Association and many nutritionists on dietary recommendations. Carbs will raise your blood glucose levels, and the more carbs you consume, the more insulin (unless you're type 2) you'll need to offset them. But remember what I consider to be the best advice Dr. Bernstein gives, he calls it the law of small numbers: big inputs means big uncertainty, small inputs means small mistakes. Always keep this truism in mind!

4) People Carry Baggage, Not Words. I absolutely despise using the term "control" in reference to diabetes because my belief is that the disease cannot be controlled, only managed. The dictionary defines "control" the verb, as "to exercise restraining or directing influence over." The medical profession just LOVES to use the word "control" when it comes to diabetes. But my response to that is I can only "control" what I eat, how much insulin I dose, and what my activity levels are going to be -- the rest is basically a crap shoot. To me, unless it always yields an absolutely predictable result, then you're not entitled to call that control. One of my favorite lines was from Showdown with Diabetes author Deb Butterfield, who once wrote: "Knowing what dose of insulin to take was not then, and is not now, a precise science. It is not a simple analog of food, exercise, and insulin; rather it is a complex and seemingly random theory of chaos with a few discernible known variables."

Some say I'm debating semantics here, but there is no denying that words wield enormous power, and when it comes to diabetes, it seems words also carry a lot of baggage, probably because of widespread ignorance about the disease. Think about this for a moment. A while back I responded to a blog post and someone quickly chastised me for using the word "diabetic". They said that I should be referring to them (including myself) as a "person with diabetes." That kind of pi$$ed me off because there's no value judgment in the words themselves, so the complaint was about their own value judgment assigned to the word, not mine. The bias is with whoever reads or hears the word, yet they blamed me for using what they considered to be a politically incorrect word. Just remember, try not to let words carry any baggage!

5) Expect the unexpected, and you'll never be disappointed! Do I need to elaborate on this one?

I am tagging: Barry (a.k.a. BetterCell), Allie, Kh├╝rt, Susana la Banana, and Vivian (a.k.a. DanielDoo).


BetterCell said...

Thanks Scott.
I am in the process of getting together all the material I wish to include.
I like and agree with "Firing your CDE and/or Endocrinologist.
At NYU, one CDE said to me,' because of all the many years you have had T1DM you know just as much if not more about this Disease than I do, so I think it might be a waste of your time to see me.'
I have *banged on many Endo Doors* and have still to find one that is not fixated or interprets everything as having to do with IRD(aka Type 2 Diabetes) or is able to help me with the prevention of any Complications that ARE associated with T1DM, except to say "keep your blood sugars in good control."................
This is something I have known since being an infant and attempt 24/7/365.5

Scott K. Johnson said...

Great list Scott. I have such trouble with #1. I think it is because how I (we?) have been trained over the years by the medical professionals we see.

Anonymous said...

Thanks for participating! You have some excellent advice on here.

Anonymous said...


You know I'm techno-challenged. I've checked out the link to Wikibetes and decided I'd just share here on your site. And please excuse the length; after 50-plus years, I've doubled the contribution.

1. Your blood glucose level CAN drop more than 100 points in a very short (30-60 minute) timeframe, even when your endo says, “IMPOSSIBLE.”
2. Hydrocortisone cream—if used lavishly (e.g. to combat infection after a serious bout of scratching—dermal abrasion--due to allergies, poison ivy, etc.) can elevate bG’s for 24-48 hours, in much the same manner as a cortisone shot will impact bG management.
3. A hot bath or shower—especially after exercise—can lower bG unpredictably. BE ALERT, BE PREPARED, BE FOREWARNED.
4. Syringes can penetrate arteries and veins—giving one a ‘mainline’ of insulin. I’m continually amazed at the number of newly dX’ed patients who have not been told to pull the plunger back, examine the syringe end for blood BEFORE pushing the plunger in, to deliver insulin. An associated issue is the ‘nicking’ of a vein or capillary, especially if the needle is being withdrawn before syringe contents are emptied. A low bG, occurring post-injection, and not expected, may be the result.
5. There WAS a gold standard basal insulin—BEFORE the advent of insulin-pump timed-delivery of fast-acting insulin. Many newbies today—both patients, doctors, pharmacists and CDEs—do not know that such a product ever EXISTED. To achieve basal control, pump users depend on technology to deliver minute quantities of fast-acting insulin in a programmed manner. Those who are not bothered by being tethered to a techno-gadget achieve similar results in maintaining basal control that I accomplished by 12-hour-interval injections of BEEF ULTRALENTE insulin. (Incidentally, I could combine my UL with Regular boluses at these times, and used injections of Regular to bolus, as needed, when mealtimes varied.) NEW is not always better.

6. Nasal sprays, like Flonase and Nasacourt will affect bG (at least in some individuals).
7. Alcohol, especially before a meal, not only goes into the system faster, but it also lowers your bG more quickly; in the case of ‘lite’ beer, there may not be enough carbs to offset the influence (lowering of bG) by alcohol.
8. Aggravation or intense flight-or-fight response can easily elevate bG by 100 points or more. Don’t forget to consider this ‘cause’ if you have unexpectedly high bG’s.
9. Don’t believe all you read on the ‘truth in labeling’ when it comes to things like pizza, bagels, and other calorie-dense foods (especially those that include highly refined carbs). Who would eat a huge bagel in one sitting if they knew the carb content was over 120 grams? Many of the new 100-calorie items, in order to maintain the ‘addictive’ sweetness category, have snuck in many of the less-than-acceptable artificial sweeteners. Remember: when a manufacturer changes a label, it is usually for other than mere esthetic reasons.
10. If the insulin in the vial doesn’t seem to be working as expected, put it back in the refrigerator, and try a different vial. They are NOT all created equal.

Anonymous said...

1. Never "test" your blood glucose . . . rather . . . "check" your blood glucose. That is to say, the number is NOT a pass / fail "test", but, rather, just an indication of a current situation, so, if necessary, modifications may be made.

2. The best level of diabetes control, is the lowest average blood glucose without affecting the rest of your life. Put another way, life first, diabetes second or third.

3. Bobby Clarke, Former NHL player is quoted as saying . . . "Never use your diabetes as an excuse to keep you from doing all that you're capable of doing." Those are wise words to live by.