My Diabetes Confession

//My Diabetes Confession
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There’s a saying:  the barber with the worst looking hair gives the best haircuts.   Presumably, since he can’t cut his own hair, he must go to the next best barber in town.  I have no idea where that saying came from.   And given that I haven’t been to a barber in years (one look at my photo and you’ll understand why), I have no way to verify it.  But it does make sense.

Maybe the same can be said for blood sugar control.  I think my practice does a pretty good job helping people to meet their diabetes management goals.  But quite frankly, my control stinks.  My A1c has crept up to nearly 8%, and despite using a pump and CGM religiously, I still experience more than my fair share of lows.  There are plenty of possible reasons:

Travel – For years I’ve been called upon to lecture and present all over the US and overseas, but this year has been busier than ever.   Since receiving the 2014 Diabetes Educator of the Year Award, I’ve been on the road an average of two or three times a month.  In fact, I’m writing this blog on a flight from Philadelphia to Spokane, WA (via Chicago and Seattle) to do a talk on insulin pump management.  Traveling makes blood sugar control difficult for a number of reasons:  time zone changes, mystery meals, long stretches of sitting in one position, and changes to one’s workout routine just to name a few.

Stress – Emotional stress can wreak havoc on blood sugar levels.  Even “good” stress – like trying to manage a growing practice – can have its effects.   This year, my wife and I have kids in four different schools (college, high school, middle school and elementary), and each participates in multiple activities.  Figuring out the schedule is mind-numbing!  We’ve also suffered through the rigors of a particularly rough winter (including two separate power outages totaling 8 days).  The blood sugar implications have been significant to say the least.

Exercise – If I’ve had one mainstay in my diabetes management program, it’s exercise.   No matter where I am or how busy things get, I find a way to work out just about every day.  But that doesn’t mean its effects on my blood sugar are consistent.  The time of day and nature of the activities vary quite a bit:  Morning or evening basketball, afternoon yardwork, post-dinner runs or cycling, midday weight lifting, and so on.  What it all amounts to is a lot of variability in terms of insulin sensitivity and blood sugar patterns throughout the day and night.

Dietary Discipline – Like many people with type-1 diabetes, I have an appetite that just won’t quit.  Perhaps it’s genetic, or maybe the lack of the amylin hormone really does make a difference.  Regardless, I’ve always struggled to avoid munching between my usual meals and snacks, and I tend to overeat – especially when faced with hypoglycemia.   I’ve taken to using liraglutide (Victoza) on a daily basis to help curb the hunger, but I still often find a way to eat myself into trouble.

BURNOUT? – This is something most people with diabetes can relate to.  But here’s where my situation is a bit unique.  My job involves teaching, motivating and coaching people with diabetes for eight to ten hours a day, day in and day out.   The last thing I want to do when I’m not helping a client is think about my own diabetes.  This makes me a bit lazy when it comes to counting my carbs, taking insulin at the right times, and making adjustments for lifestyle activities.  I’m like a chef who prefers to order takeout.  A maid who leaves their own house a mess.  A writer who would rather talk on the phone than send letters or e-mails.

I’m not sure why I’m telling you all this.   Maybe it will help you, maybe it will help me.

A few years back, I was presenting at a CWD (Children With Diabetes) conference in Cincinnati.  Anyone who has a child with diabetes should get to know this organization.  Anyway, a physician with type-1 diabetes showed how he managed to keep his glucose levels remarkably steady.  We’re not talking decent control.  We’re talking impeccable control.  Rarely a reading above 150 mg/dl (8 mmol/l) or below 70 mg/dl (4 mmol/l).  While I stood there feeling horribly guilty about my own numbers, I saw most of the parents in the room shaking their heads in disgust, and heard many commenting to eachother:  ‘Is this guy kidding?  What planet does he come from?’   I could tell that they tuned him out completely, which is a shame because he had some really useful and practical things to say.

When I presented later that day, I made a point of sharing the ups and downs of my blood sugars during that particular trip.  The audience smiled, nodded their heads, and warmed up to me almost instantly.

Apparently there is something good about “keeping it real”.  None of us is perfect when it comes to diabetes management.  We all have our challenges and obstacles to overcome, and I’m certainly no exception.  And while I’ve learned how very important it is to accept ourselves for who we are, it is even more important to not stop trying.  I, for one, am committing to cover my irregular eating with matched doses of insulin, and to be more aggressive at bolusing for highs as early as possible.   I’m also going to make a serious effort to treat my lows with less than the usual 12,000 grams of carbohydrate.  Interestingly, none of this changes the way I teach and manage my clients.  But it certainly gives me a stronger appreciation for what many are going through.

So welcome to my little barber shop of diabetes management.   My haircut may not be the best, but I promise to give you the best-looking “do” in town.

– Gary

By | 2016-12-08T23:27:00+00:00 March 21st, 2014|Thinking Like A Pancreas Blog|23 Comments

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23 Comments

  1. Denise Lee March 21, 2014 at 5:26 pm - Reply

    Gary–what a great post. Thank you for sharing. While I definitely don’t wish struggles upon anyone, especially not you, there is comfort in knowing that even the experts go through struggles too. And with any luck, devices will take the reigns fairly soon for all of us!

  2. Penny March 21, 2014 at 5:43 pm - Reply

    Gary, THANK YOU for writing this. This helps me know that it’s not just me, or G, it’s the diabetes and it’s hard stuff. No matter how much we learn, it’s still hard day in and day out. And knowing you are human (with a superior knowledge about diabetes!) is goof for everyone. It makes it REAL. And as a parent of a PWD, I thank you from the bottom of my heart. I plan to share this with G and talk about it. Keep on keeping’ on!

  3. Nanci March 21, 2014 at 7:59 pm - Reply

    Wow Gary. This was real! And so very comforting to know that even you have your cycles of not great control. I have admired you from afar and just recently purchased your book. Thanks for this post! You are an amazing individual. Keep up the great work! Listening to your advice and others from your practice via internet alone has had a very significant impact on my control.

  4. Kathy Keller March 21, 2014 at 8:25 pm - Reply

    Thank You for your honesty. That is a rare quality these days. It also helps make you “da Coach”.

  5. Julie March 22, 2014 at 7:21 pm - Reply

    Gary

    I’ve read your book, ‘Think Like A Pancreas’ and follow your blog and I have a lot of respect for your knowledge and the work that you do.

    I’ve had type 1 diabetes for early 30 years and struggled for any sort of control during that time. Last year, I discovered Dr Bernstein and started following a low carb/high fat ketogenic way of eating. In 6 months, I’ve seen my insulin requirements dropped by 60%, my A1c has come down from 11.6 to 7.7 (and hopefully lower by the next blood test) and the range of swing between my highs and lows are much less.

    What are your thoughts on this way of eating and is it something that you’ve ever considered for yourself? I’d be very interested to hear your reply.

    Kind regards,

    Julie

    • Gary Scheiner April 1, 2014 at 7:02 pm - Reply

      Hey Julie –
      Although I’m not a fan of the Dr. Bernstein approach (it is quite extreme and difficult to follow long-term), one can’t argue with the results you’ve seen. As long as it is not having a negative impact on your health and quality of life, it seems to be working for you.

  6. Scott K. Johnson March 23, 2014 at 2:53 am - Reply

    Gary, thank you for sharing this. You have no idea how powerful it is to see that someone like you also struggles with the same things so many of the rest of us do.

    I’d let you cut my hair anytime. 🙂

  7. Cheryl March 23, 2014 at 5:11 pm - Reply

    After a gastric stapling in 1983 I became type 2 diabetic…After years of medications that did not bring me under control … taking me to very dangerous places in ups and downs and as many burnouts from trying…Slow acting insulin was finally covered by my insurance plan. I thought this would be my answer for good, for sure!. Well neither insulin was the right one…I was allergic to both!
    No other option than to stop eating carbs…
    Since then I found LC Healthy Fats way of living…I will never return to that nightmare roller coaster ride called insulin therapy… I am doing better without it.

  8. Adele Freeman March 23, 2014 at 5:23 pm - Reply

    Thank you so much for your honesty. I’m an RD, CDE who is married to a Type I diabetic. His A1c is below 7% , but I still beat myself up when his BG level rises to 200 mg/dl after a mystery meal or some other reason we can’t always account for (probably sitting too long working at his computer or additional coffee or whatever). He does use the new Medtronic Enlite system, which has been really helpful with nocturnal hypoglycemia and louder alarms. I realize we won’t always be able to get perfect results consistently with our busy lives and it’s okay. We continue to try and rather than beating ourselves up, just continue to learn new insight. Thank you so much for sharing your knowledge. I’ve heard your presentations at several CDE functions and always glean new information to help me personally and professionally.

  9. Vicki Baker March 23, 2014 at 5:44 pm - Reply

    Thanks so much for this post. I am sure many can relate to the issues mentioned as I can. There is something to being real. Like we all are human!

  10. Tricia Jöstlein March 23, 2014 at 6:05 pm - Reply

    Thanks, Gary–you rock! And living with Type 1 is a very tough job.

  11. Richard Vaughn March 23, 2014 at 6:59 pm - Reply

    Hello Gary, I am the old guy that sat close to you when you gave two of your presentations at the FFL in July, 2013. (I have some hearing loss.) You are an excellent speaker!! I still think you should be a lecturer in med school, so the students could graduate with some accurate knowledge of diabetes, for a change. lol

    I have been retired for almost 17 years and my A1c’s have been in the range 5.5-6.4 all those years. That is due to my being on a relaxed schedule, with is usually consistent day-to-day. Before retiring I was a teacher at the college level, and my schedule at both home and on the job was hectic, so my A1c’s were all over the place and running high like yours are now. I guess I am telling you this so you can think about the days when you are retired. Maybe you will have wonderful A1c’s then.

    Despite my good A1c’s, I do have too many lows and highs. They tend to average out to a good BG average, and a good A1c. I have a lot of scar tissue after 68 years of injections and pumping. Every time I change sites, I do not know what my absorption level will be, so I have to adjust my basal rates, my ratios, and exercise schedule, to compensate. When things are finally going well, it is time to change sites, and start over again. I can never tell where my best/worst absorptions are going to be.

    I agree that your telling your audiences about your own control problems is a great idea, and you demonstrated the outcome very well. I am going to be giving some talks to much smaller audiences, and I will remember your story while doing so.

    I hope to see you again at the FFL in 2015. This year I am having knee replacement surgeries, so all the walking at the FFL would be too much.

    • Tim Steinert April 4, 2014 at 6:51 pm - Reply

      68 years as a diabetic! You must be doing something right to say 68 years. I’ve only been one for five years. If I make 68 years I’ll be in Guinness for sure (being 48 now)!

  12. Jill Evilsizor RN March 24, 2014 at 12:55 pm - Reply

    Great article! Thank you! I found your article practical and full of empathy. It reminds me of the saying “people don’t care how much you know until they know how much you care”. Well done & motivating.

  13. Tim Steinert April 4, 2014 at 6:45 pm - Reply

    I attended your talk at Benaroya about CGMs at the SDGNW 2014 Spring Workshop on the 22nd of March. Great and lively discussion and, as usual, just great to get out and meet some fellow pancreatically challenged folk. Looking at my BG meter, I was pretty confident I would be in the sixes for my A1c after a less than stellar 7.4 in December. I’ve been putting in the work that used to put me in the mid-sixes. No dice–7.4 again. Perhaps my meter is sucktastic.

    But it also will help me find out how good my new endo is. How will we go about to get my numbers down? Will we start all over and figure out my basals all over again (at my carb ratio)? Anyway, this is the one aspect of diabetes that I never get used to: the moving target of control– akin to giving a baby a toy and snatching it away for no reason. Good luck on your foray into the blogosphere and may your A1c drop like mine is going to- or someone’s going to get hurt!

  14. John April 5, 2014 at 7:16 pm - Reply

    Gary, have you ever seen a carpenters house? It seems to be in a constant state of remodel, that is somewhat like diabetes. We all have our diabetes gremlins and I am no exception. I still get lots of lows and highs, but have been able to catch them a little sooner by raising my treatment for lows to a higher number (80) and lowered my treatment for highs to 150 instead of 200 and have been able to get rid of some of them by doing it this way, its not perfect and sometimes I over correct but I know how my body works (most of the time), I’m sure that you also know how yours work. The point is, not to stop trying, the sweet spot is out there for us we just have to find it. I will try even the most outlandish stunt, if I think it will help me with my control, such as moving my numbers around and how I look at them. So don’t let the Gremlins get you down, Oh, and, by the way great book about living with insulin.

  15. Roz Sutch April 9, 2014 at 9:28 pm - Reply

    Great post Gary! And this was by far my fav line:
    I’m also going to make a serious effort to treat my lows with less than the usual 12,000 grams of carbohydrate!
    Knowing you struggle is a big help and encouragement!

  16. Sam May 10, 2014 at 10:40 pm - Reply

    Cut down the carbs and your appetite for them will slowly wane. You also won’t have big swings in blood sugar if you are dosing correctly. This from someone who has T1 and Celiac for 30+ years, and an A1C of 5.8%. I eat foods I love (around 60-80 carbs a day, which is LC not VLC), I just don’t eat garbage, which most things grainy, ‘white’ and/or processed are. I have about one very mild low a week, usually with unexpected activity. I do sometimes eat cake, but it’s raw-food cake with lots of coconut oil to delay absorption. People with diabetes just cannot eat anything they want and expect to have a low A1C with very few hypos. Very few people can achieve that. It’s one piece of nonsense that was fed to us when younger so we would think diabetes is not a big deal. It IS a big deal! Notice I’m not promoting Bernstein in any way – too harsh for me – but I have never understood why higher carb meals, are still recommended for someone who has a carb metabolism problem. That goes for T1 and T2. We no longer have to feed current insulins, but we simply cannot eat anything we want and expect to stay healthy, avoid long-term complications and get an A1C that minimises long-term risk.

  17. Terry July 13, 2014 at 5:00 pm - Reply

    Gary – I admire your honesty. Diabetes is hard, that’s just the simple truth. It’s even hard for experts to figure out. In my 30 years of tangling with this adversary, I’ve found that it’s constantly changing nature is one of the things that make BG hard to control on a consistent basis.

    Like you, I have embraced most of the technical tools to help me. I use an insulin pump, CGM, and a fingerstick meter. I also upload all the related data to a web-based site periodically to help me discern trends and answer them appropriately.

    One of the best tools I use is to limit my carb consumption to about 75 grams per day. The success that I’ve personally experienced with this eating style is obvious to me. I’m not a Bernstein proponent per se but the benefits of some carb limit to a person with diabetes seem to make a lot of sense to me.

    Carbs are the main driver of post meal BGs. Eating less carbs means taking less insulin and therefore leads to smaller mistakes. This dietary change led to a 50% cut in my total daily dose of insulin. My A1c dropped more than 0.5% and most importantly my BG variability dropped as well. Less BG variability allows one to lower the average BG without incurring more hypos.

    One doesn’t have to adopt low carb eating a la Bernstein to experience some success. There was a study done in Sweden a few years ago where the T1D participants limited carb consumption to 75 grams per day. They experienced many of the same benefits that I did. It’s an interesting study and worth the read if you haven’t already read it. Here’s the citation:

    Nielsen JV, et al. Low carbohydrate diet in type 1 diabetes, long-term improvement and adherence: a clinical audit. Diabetology and Metabolic Syndrome 2012;4:23

    Thank you for all that you do to help PWDs. You were instrumental in helping me find my way a few years ago. I also thank you for “keeping it real!”

  18. LauraLS August 11, 2014 at 6:13 pm - Reply

    I’m a little late reading this post, but wanted to say bravo. I’m constantly facing this battle. I’ve been a type I for 44 years, and this is never ending. I am not overweight, in fact I barely eat. I’m not a fan of Bernstein or low carb, but I’m low carb anyway. What I do face is exttreme insulin sensitivity. My BG drops 200 points form one unit at times. If it is 100, it will fall and fall. Never manages to stay at 100. I dont know how people run around with low A1c’s, I see blinking spots when my BG is 70. The spots look like Ms. Pacman. I dont have funds for CGMS and in fact, am currently rather unhappy that my new ACA insurance plan doesnt even cover supplies or pumps well.
    Anyway, been following your articles for years, and appreciate the honesty.

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