Oh No, Not Again!

Laddie:  In last week’s post  about frozen shoulder, I mentioned that my story is almost identical to that of Sue from New York.  Similar age, same risk factors, and currently experiencing the condition for the third time.  I wouldn’t wish frozen shoulder on my worst enemy and I’m sorry that my friend’s story mirrors my own.

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Sue May 2013_Head SquareMy first bout with frozen shoulder (adhesive capsulitis) began in 2002. I had noticed that it was becoming increasingly difficult to put my left arm behind my back and I couldn’t raise it very high. I tried not to use arm and shoulder thinking that rest would be the best medicine. Because it continued to get worse, I finally I went to my family doctor who told me I had frozen shoulder. I had never heard of frozen shoulder before.

The doctor suggested physical therapy, and I made an appointment to go. When I arrived I gave them my insurance card and was told my copay would be $20 a visit. I was set up to go three times a week. I remember on one of my first visits lying on my back while a strapping young man took hold of my arm and tried to move it up, all the while straining and exerting a great deal of pressure. I was amazed that my arm barely budged, and decided that the term frozen shoulder was very appropriate. I continued my daily walks with my husband. One day while walking I stepped into a crack in the sidewalk and the pain was excruciating. After that, I carefully watched where I walked. My physical therapy progressed as my shoulder gradually loosened, and I was given exercises to do at home with an arm band. I went to physical therapy from January until May, when I was told I could stop coming but continue my home exercises. My frozen shoulder gradually recovered almost completely.

In 2007 I once again got frozen shoulder, this time my right shoulder.  I didn’t have the degree of inertia that I previously had, so I decided to cope with it on my own. I did the exercises at home with the arm band, and a friend at work suggested some other things to try. Once again I gradually recovered from the frozen shoulder and moved on.  Slot Machine2I told myself that I was done with frozen shoulder since I’d had it in both shoulders already.

Now it is 2013 and once again my left shoulder is showing signs of freezing. I noticed it while descending the stairs and lifting my arm to turn off the light. I am being proactive and starting to exercise my arm, but I know that it will run its course in its own time, with or without any effort on my part. Because I was told during my first bout with frozen shoulder that it would get worse if I favored the arm and didn’t move it, I plan to keep using my arm and shoulder as much as possible.

And I will keep praying that number three is the lucky number that will end my story with frozen shoulder….

Argh! Frozen Shoulder

Laddie_Head SquareI am an expert on frozen shoulder.  Believe me, it is not something that you want to be an expert on.

Frozen shoulder is the layperson’s name for adhesive capsulitis and is a shoulder condition that results in stiffness, decreased ROM (range of motion), and often incredible pain. If you want medical jargon and links to a lot of the literature about frozen shoulder, I suggest you check out a 2008 article by Manske and Prohaska.  Or just Google the term and you’ll find tons of information.  Suffice it to say that if you get frozen shoulder, you can’t move your shoulder very well and it hurts a lot.

I will be using term “frozen shoulder” only to mean adhesive capsulitis.  Some people and even doctors describe any shoulder stiffness as frozen shoulder.  If you can get rid of your “frozen shoulder” by doing a week’s worth of exercises in the shower, you don’t have adhesive capsulitis.

Diabetes is a huge risk factor for joining the frozen shoulder club.  Other risk factors include hypothyroidism, hyperthyroidism, Parkinson’s disease, cardiovascular disease, being middle-aged, and being a woman.  I win on four accounts:  woman, middle-aged, Type 1 diabetes, and hypothyroidism.  You don’t need to be middle-aged to win the lottery because I have a young Type 1 friend Cynthia who suffers greatly with frozen shoulder.

Frozen Shoulder Carnival GameAdhesive capsulitis has 3 stages, each which can last 3-6 months or longer.  Following along with the “frozen” analogy, the first stage is called the “freezing stage” and may be excruciatingly painful as the ROM of the shoulder slowly decreases.  When I had my first frozen shoulder, I slept in a reclining chair alternating ice packs and a heating pad for a few weeks because it was painfully impossible to lay in bed.  My next two frozen shoulders were moderately painful, but very manageable.

The second stage is the called the “frozen stage”.  It is characterized by decreasing pain along with increasing stiffness.  My experience in this stage is that strengthening exercises may be helpful but any stretching beyond gentle is futile. With the shoulder capsule totally immobile and full of adhesions, it won’t stretch and you run the danger of injuring other parts of your shoulder and neck if you push it too hard.

The third stage is the “thawing stage” when your shoulder slowly returns to normal.  There is only minimal pain with the stretching exercises and you can feel the correct things stretching.  Most people eventually have a full recovery from adhesive capsulitis although people with diabetes are less apt to achieve total remission.  Some people end up having surgery to release the shoulder, but my doctors are very anti-surgery for the condition. The vast majority of people only get frozen shoulder once or at most once in each shoulder.  Unfortunately another prize for having diabetes is that you may get it repeatedly.

The exact causes of frozen shoulder are not known but terms like collagen fibers, platelet derived growth factor, glycosylation, poor circulation, inflammation, and fibrofatty infiltration are tossed around.  Like most things with diabetes, doctors are quick to blame poor blood glucose control for the condition.  Upon diagnosing my third frozen shoulder in May of this year, my rheumatologist immediately asked “What was your last A1c?”  Rightly or wrongly, I was somewhat offended by the question because my A1c’s are always quite low and within the lab normal range.  On the other hand, I have Type 1 diabetes and my blood sugars are miles away from being “normal.”  So maybe I shouldn’t get so huffy.

What most doctors don’t know is that recent studies, including those led by Thomas and Yian, indicate that A1c’s are not associated with the development of frozen shoulder.  These studies found that the strongest correlation for those with Type 1 was with duration of diabetes. Similarly in a Finnish study headed by Arkkila,  A1c levels for the previous five years had no correlation to the onset of frozen shoulder.  In fact, the Type 1 patients with frozen shoulder had a lower mean A1c than the Type 1’s without the condition.  Ironically for me, two of my three frozen shoulders have coincided with the lowest A1c’s that I have ever had.*

Akkila Chart Frozen Shoulder

Frozen shoulder used to be listed on the last page of diabetic complications and was considered to be somewhat unusual.  More and more it is now being highlighted as a common problem for people with diabetes and it is often listed on the front page of complications.

I am not going to give a blow-by-blow account of my frozen shoulder history.  A synopsis is that my first one occurred on the left side after a shoulder injury in 2001 and was incredibly painful.  Along with physical therapy, time was the biggest healer and I was about 90% healed within a year.  My second one occurred about four years later on the right side.  It was not nearly as painful or debilitating as the first one, but it took longer to resolve. Number three is back on the left side and I’ve had symptoms for about 6 months.  I am optimistic that I will achieve at least a 90% remission.

I am not so confident that this will be my last dance with frozen shoulder.

Sue from New York is a contributing author to my blog and we are very close in age.  She has written about her frozen shoulder experience in a post which will be published on Monday.  It is uncanny how similar our stories are.  When you read her story, you will be reading mine.

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Diet Coke: Friend or Foe?

I have been working on the follow-up to my Food post with a detailed description of my low-carb meals and snacks.  Unfortunately last week I really struggled with blood sugars.  There was no way to write about a “perfect” diet because nothing about my diabetes was perfect.  So I figured I would write about Diet Coke instead.

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Laddie_Head SquareI have not had a Diet Coke since August 15.  According to my iPhone goddess Siri, that is 39 days or 1 month 8 days or 5 weeks 4 days or 0.11 year.  I have not had one cup, one can, or one sip.  Nada.

Usually it is hard for me to give up Diet Coke, but this time it’s been fairly easy.  One reason is that I spent a queasy weekend in New York City starting on August 16.  It had nothing to do with Diet Coke because both my husband and I had the tummy yuks complicated by bumpy taxi rides.  But somehow in my mind, the Diet Coke the day before seemed linked to my queasiness.

As someone with Type 1 diabetes, I have been fairly accepting of a Diet Coke habit.  There are so many restrictions in my life that it’s been easy to ignore the caffeine and artificial sweeteners in my favorite beverage.  The Internet is filled with the risks of diet soda including kidney damage, metabolic syndrome, cell damage, and rotting teeth.  How much those risks are coincidental and how much is cause and effect is debatable.  So make up your own mind.

What is actually my biggest concern is the phosphoric acid in dark colas.  I was diagnosed with osteopenia in 2007 and spent five years on Fosamax.  There are some studies that indicate that phosphoric acid in dark colas might be implicated in bone loss.  I have other osteoporosis risk factors, so one might argue that I should avoid Diet Coke.

The last time I gave up Diet Coke I allowed myself one day a week to indulge with no limits on the amount.  It worked quite well for several months.  I played a silly little game to keep me motivated.  On my digital calendar I added a daily task titled “No Diet Coke” repeating forever.  The box each day was colored blue.  At the end of each successful day I changed the color of the box to pink to reward my success.  The box on the day when I drank Diet Coke stayed blue and was renamed “Yes Diet Coke.”  After a while I got tired of doing the calendar changes.  I kept the one-day-a-week habit for a while longer.  But then one-day-a-week went back to three or four and eventually back to seven.  Because I had never pledged to do this forever, I didn’t feel too bad about the resumption of my addiction.

When asked about Diet Coke, most of my doctors have indicated that as long as you limit it to about one can daily, the risks are probably very low.  But that’s not how I drink Diet Coke Friend or Foesoda.  First, I don’t like Diet Coke out of the can very much.  I prefer fountain soda and alternate between the 32-ounce cups for $.69 at Super America and the equivalent $.89 refills at Holiday.  (It’s all about location because how far should you drive to save 20 cents?)  Secondly, I don’t drink the soda all at once.  I like to nurse it all afternoon and add more ice as needed.  It keeps me company in a friendly sort of way.  Third, as I’ve discussed when it comes to food, I don’t do moderation well.  I’m an all or nothing girl.

The danger of viewing Diet Coke as a friend is that my mother always considered cigarettes to be her friend. They kept her company, soothed her, gave her hands something to do, and were there for her every day.  Emphysema and lung cancer put the friendliness of her friend in doubt.

Although I like the idea of staying away from Diet Coke permanently, it likely won’t happen.  I refuse to beat myself up over it or view it as a failure.  I’ve got enough inner demons and don’t need to add more guilt to the list.  I’m currently drinking a lot of sparkling water/club soda and enjoy that very much.  But it’s not available at most of the  places where I would normally get a fountain soda.  When I take the grandkids to McDonald’s, I savor my Diet Coke while they play on the indoor playground and then get a refill to take home.  Or I’ve been known to have a 2- or 3-Diet Coke visit with Scott Johnson at the Golden Valley McDonald’s.  Iced tea is an option and might just have to do.  Of course now that Scott has a new bicycle and computer, he might start wanting to meet somewhere more upscale.  Yeah, right….

So today I didn’t have a Diet Coke.  I didn’t have one yesterday either.  But I’m making no promises about tomorrow.  And that’s just the way it is.

The Great Divide in the DOC

Abby with Abby Crown_no backgroundI’m Abby the Black Lab and it has been a while since I have written a blog post.  Lately I have been utterly distressed by a great divide that I see in the DOC (Diabetes Online Community) and I think it is time to bring this to the attention of my readers.  You probably think I’m going to start talking about the Type 1 versus Type 2 wars that periodically surface on the Internet.  Are you kidding?  My subject is not nearly as trite as that.

No, it’s the dog people versus the cat people.  The canines versus the felines.  The lovable, loyal, goofy, tail-wagging dogs versus the slinky, aloof, meowing and menacing kitty cats.

The cat aficionados have long been led by Kerri from Six Until Me whose cat Siah is a media star who poses in laundry baskets and attempts to dominate the DOC as an “internet celeb-kitty.”  The dog people are more decentralized in their leadership.  Canines have conceded Twitter to the cats, but think that we rule Facebook.  The blogosphere is probably a toss-up, but my opinion is that dogs are truly superior in their contribution to their PWDs (people with diabetes).  Duchess is a diabetes service dog who daily keeps her owner Tarra safe.  Meri’s boys are protected from the abyss of low blood sugars by Lawton the Yellow Lab.  All human hearts have melted seeing photos of Kim’s corgi watching over the new baby “Rabbit.”  Black labs like Riley owned by Mike Hoskins insist that their owners exercise by taking them for daily walks.

Cats meanwhile are tiptoeing across keyboards and writing meaningless blog posts with the tag line “zxzxzxdjjj.”  Pissed-off and non-sleeping kitties are considered newsworthy.  Oh yeah, Chris of @iam_spartacus fame has some feisty looking cats and @KarenBittrSweet claims to have the world’s cutest cat.  Videos of Grumpy Cat are ubiquitous, but if I want to see grumpy, I can look at my owner Laddie when her meter says 286.

Fortunately the DOC universe of cats and dogs has recently been in a state of equilibrium with only a few ripples of discord.  The dog people tried to sneak one under the rug in Twitter and Facebook with the purchase of a Scottish Terrier named Bella by Cherise.  Someone needs to tell Bella that if she wants to become an icon in the DOC Canine Hall of Fame, she should learn to walk on a leash.  Also tell her that if she’s going to be a supporter of people with diabetes, lancet devices should not be on the menu.  The cat people have lost some heroes as Kerri and Pancreassasin mourn their beloved friends who have gone to the scratching post in the sky. (RIP Prussia July/2013 and Pancreassasin 2week kitty August/2013).

But the calm has been shattered!  Earlier this month the cat people added a new Abby_Loopy2superhero to their roster in the guise of a young child named Birdie.  Smiles and cute Batman Princess costumes are not adequate to camouflage the chaotic schemes of this young and seemingly innocent feline-loving child.  With no attempts to disguise her evil intent, this child suggested that the family cat Siah was lonely and needed a friend called…. Loopy.

The Loopy hullabaloo has not been all.  Another scandal has been exposed in the DOC and I, Abby, a supporter of all people with diabetes, have been accused of consorting with the enemy.  A photo of a certain black lab being nuzzled by a gray feline has been splashed across the headlines.  I confess.  I am guilty.  I like cats and cats like me.

Abby Headlines

Every year I put “Kitten” at the top of my Christmas list.  Unfortunately my owner Laddie is allergic to cats, so no personal kitty is in my future.  I am extremely fortunate that when Laddie travels, I get to go to Linda’s house and visit my friend Nikki.  Nikki is a shy cat, but I have learned to approach her slowly and lay my head down acknowledging that cats are supreme.  She rewards me with purrs and caresses of her head against mine.  It is a magical glimpse of heaven for a lucky black dog who is showered with love by a beautiful princess gray cat.

My romance with Nikki has some important lessons for everyone.  Although you seemingly-civilized people with Type 1 diabetes sometimes argue with those who have Type 2 diabetes, you pancreatically-challenged doofuses should remember that you are stronger together than apart.  Diabetes in all of its evil forms is the enemy and you should join hands and conquer it together.

More importantly, we dogs and cats should toss aside our petty differences and stop the harassing hisses and barks.  With a united army of canines and felines, we can fight a cosmic battle against our common enemy.   A enemy who taunts and teases us in our own yards and through our own windows.  An adversary who seems to think that dominance is achieved through water-skiing videos.  We have seen the enemy and the enemy is……..SQUIRRELS!

Abby Crown Against Squirrels

Thoughts on Brittle Diabetes

Sue May 2013_Head SquareThere was a recent blog post about brittle diabetes at Diabetes Mine in which the author says that for the most part, “brittle” is considered an outdated label.  He also states, “But some disagree, saying “brittle diabetes” refers not to everyday ups and downs, but rather to a rare but real condition in which the PWD has volatile blood sugar swings that are nearly impossible to control. It’s known as labile diabetes in clinical lingo and there are some in the patient D-community advocating to bring more awareness and recognition to this rare and severe form of type 1.”

In 1975 when my son was diagnosed at age 4 with what was then called Juvenile Diabetes, brittle diabetes was an often used term for hard-to-control diabetes. And let’s face it, in those days it was a given that Type 1 diabetes as we now call it was hard to manage on the best of days. With a once-a-day shot of NPH insulin and no method of blood sugar testing, my son’s control was a wild guess based on urine strip results over three months.  His pediatrician would look at the results and adjust the NPH dosage which would be the same every day until the next visit.

Fast forward to 1988 when at the age of 38 I was diagnosed with Type 2 diabetes. Several years later my diagnosis was changed to Type 1. From the start I had the advantage of test strips for testing my blood sugar. Several years later both my son and I learned to count carbs and give ourselves MDI (multiple daily injections). Now we both have insulin pumps and continuous glucose monitors which have greatly improved our ability to control our blood sugars.

One thing I have noticed through the years is the difference between my son’s and my level of control. He works a lot harder to manage his diabetes than I do. In the past he Man_Brittle_Finaldeveloped an extensive Excel spreadsheet where he recorded all of his food intake, exercise and insulin to share with his endocrinologist in the hope of achieving more stable blood glucose numbers. He has always had a difficult time with rapid blood sugar fluctuations and the addition of hypoglycemia unawareness compounds the problem. Yes he has the CGM, but with the 15 minute or so delay in the interstitial fluid catch-up, low blood sugars have caught him off guard many times. One time after he passed out from a hypoglycemic episode at work, he was admitted to a hospital for a week in an effort to get his blood sugars under control.

My diabetes experience has seemed to be much more level compared to his. In my 25 years of diabetes I have never experienced diabetic ketoacidosis (DKA) or even come close to it. In fact I believe that the highest blood sugar I’ve ever reached was at diagnosis and that was around 480. I never had the benefit of being tested for Type 1.5 or LADA (Latent Autoimmune Diabetes of Adults), but I suspect that is what I initially had.  At this point I consider myself simply a Type 1 diabetic.

Sue from Pennsylvania’s husband was diagnosed with Type 1 diabetes later in life and his doctor has told him that he has brittle diabetes.   Sue agrees with him.

Laddie’s thoughts on brittle diabetes are in part, “I think that because brittle has so many old-fashioned connotations that maybe doctors should start using another term for the “extreme” cases of Type 1.  In most of my years with diabetes and as recently as ten years ago, all of my doctors called everyone with Type 1 brittle to distinguish them from Type 2’s.  “Labile” was also a favorite term.”

I know that for the most part the medical establishment does not agree with the brittle diabetes label.  However, I strongly believe that there is a physiological reason for the differences in control between my son’s diabetes and mine. My final take is that diabetes is much harder to control for some people than others.

Food

Laddie_Head SquareVery few people in the diabetes community want to be preached at about what they eat.  That is not my aim in this post and if Mrs. Preachy makes an appearance, I’m going to slap her upside the head and boot her out.  What I want to do is talk about where I am with food and explore some ideas about food and Type 1 diabetes.  Most specifically I will be talking about carbs.

Like almost everyone with Type 1 diabetes, I’ve spent my life trying to find the magical balance between food as nutrition, food as pleasure, food as a social hub, food as a deterrent to low blood sugars, and food as an emotionally-charged addiction.  Diets are prescribed like medicine with the assumption that if you play by the rules, things will work perfectly.  Anyone who has had Type 1 for more than five minutes knows that food, blood sugar, weight control, and insulin rarely play nice together and it’s hard to keep guilt out of the equation.

In recent years I have been reducing carbs or at least fast-acting carbs.  Ten years ago I would have argued (and did argue) with anyone who suggested that I couldn’t manage my diabetes well while eating a lot of carbs.  I knew that things like cookies and candy were guilt-laden treats and better left alone, but I loved my breakfast with cereal, milk, fruit, and cottage cheese.  Other meals weren’t much different and I got used to high post-meal spikes followed by crashing lows because I didn’t know anything different.

Why did I start exploring alternative ways to eat and finally commit to low carb?  Because I was tired of the lows.  My lows and highs have always been intrinsically connected.  I have never been able to match insulin well to high carb meals.  I’ve pre-bolused until I went low before eating; I’ve tried the super bolus; I’ve experimented with combo boluses.  I’ve used Novolog, Humalog, and Apidra.  I’ve never tried Symlin for a multitude of reasons, but other than that I’ve done it all.  Carbs spike quickly for me and short-acting insulin stays around for a long time.  When I have a series of lows I tend to throw caution to the wind and eat a boatload of junk food resulting in stubborn highs.  After too many highs, I start rage bolusing and then end up low again.  After a while this gets to be an exhausting way to live.

Every time that I adopt a carbohydrate restricted diet, I find that my diabetes is much easier to manage.  Do my blood sugars flatline on my Dexcom?  No, but the Himalayan peaks and valleys are replaced by less jagged tracings with few excursions outside of my target range.  I’m not as hungry as when I eat fast-acting carbs and my cravings are greatly reduced.  I truly believe that carbohydrates can be just as addicting as tobacco, drugs, and alcohol.

I previously wrote a post about why you should read Dr. Bernstein’s Diabetes Solution.  My diet is not as restrictive as he espouses because I incorporate berries, apples, nuts, sprouted grain bread, and wine into my life.  I’ve read a few other books that reinforce the idea that no one, especially those of us with diabetes, should be eating a diet high in refined carbohydrates.  Why We Get Fat by Gary Taubes is a scathing indictment of the low fat/high carb diet prescribed by medical professionals for the last thirty years.  A lot of what he writes makes perfect sense to me as this ubiquitous heart-healthy diet has been accompanied by a huge rise in the rates of obesity and Type 2 diabetes.  Wheat Belly by cardiologist William Davis is a similar criticism of high carb diets along with the assertion that genetically modified modern wheat is a culprit in the obesity crisis.

Glucocoaster_FinalI am increasingly convinced that the theory that “Type 1’s can eat anything as long as they bolus for it” is questionable at best.  I also believe that “diabetic” diets with 45-60 grams of carbohydrates per meal set many people up for frustration and failure.  The “glucocoaster rides” described by many Type 1’s are indicative of the difficulty of matching current insulins to the blood glucose effects of carb-laden meals and snacks.  My experience has been that reducing carbs and therefore substantially reducing my bolus insulin has measurably reduced my highs and extreme lows.

I am not so naive to suggest that everyone with Type 1 diabetes should eat exactly as I eat.  Even with the food decisions I am currently making, it is still hard to analyze and manage everything that affects my blood sugar.  But if you are struggling or even just attempting to improve your numbers, you might find that carb reduction is a powerful tool and easier to incorporate into your life than you might think.  Just remember that major diet changes have to be accompanied by major insulin changes with a lot of testing.

I’ve been working on this post for a long time and have yet to come up with a version that satisfies me.  Recently two other bloggers have written posts that say exactly what I want to say and probably do a much better job of saying it.  The first is a post by Katie at Diabetic Advocate where she talks about her decision to eat low carb and photographs a series of meals.  She sums up her decision by saying: “I have reached a point in my life where I want better BG control MORE than I want to eat high carb foods.”  The second post is by Katy at Bigfoot Child Have Diabetes and explores the idea that maybe normal as symbolized by Cheetos isn’t something we should be striving for.  She hypothesizes that we’ve gone too far in the idea that PWD can eat anything.  She says exactly what I’ve been wondering and have been fearful of putting on paper.

I have not pinky finger pledged to forever lead a life devoid of fast-acting carbs.  But every time I go back on a low carb diet after a period of falling off the wagon, I stay on it longer than the previous time.  It makes sense to me.  I feel good.  My diabetes is easier.  I have fewer lows.  I look forward to a day when we have faster and more precise insulins, but at least for today low carb is where my decision box has landed.

A Call Not Made

Sue B_Head SquareI had a cousin whom I never really got the opportunity to know well.  My father and my cousin’s mother were brother and sister.  Growing up, our family lived in Philadelphia and my cousin’s family lived in Washington, D.C.  When they settled there I saw him occasionally but because he was older by 5 years, we didn’t have much in common.  The years passed and we saw each other less and less and then not at all.

When my husband was diagnosed with diabetes in 1996, I thought about calling him.  I knew that he had extensive knowledge of diabetes.   But as happens all too often, I kept putting it off thinking that I would eventually make that call.  Days passed, weeks passed, months passed and then years passed.  I never did make that call. Then came a day in March when I received an e-mail from another one of my cousins that he had died.

The other day I was speaking to Laddie, my new friend who graciously offered me the chance to write on this blog, and we were discussing people who are well known in the diabetes field.  I happened to mention my cousin’s name and not only did she know of him, but she sent me a link to a Keynote speech presented at the Friends for Life Conference that took place in July.  The address was given by Meri Schuhmacher and was posted on her blog, Our Diabetic Life.  I read that speech with tears in my eyes and a deep sadness that I never did pick up that phone to call this wonderful man.   I forwarded that speech to my cousin’s sister who has been a diabetic since early childhood.  She sent me a link to another blog post written by Tom Karlya.  From that post, I gained more insight into a man who was a psychologist, a professor of medicine and pediatrics, had written many publications, traveled to conferences all over the world, and was on many boards with his life’s focus being on improving the emotional care of people with diabetes.  He was also a gentle man who loved his family and nature and lived each day to the fullest.  Since I read these two blog posts, I have learned from other publications how well respected my cousin was in the diabetes community.

Richard RubinMy cousin’s name was Dr. Richard Rubin.  I never got to know him in life but through the writings of others, I am now getting to know him.  Every day since his death, I not only mourn him, but my loss in not picking up that phone.  If anything is to be learned from my experience, it’s that age old expression “never put off till tomorrow what you can do today”.   I lost the opportunity to get to know my cousin and find out for myself how wonderful he was and why he was so loved by his family and by those whose lives he touched.  His life was a life well lived and I wish I could have been a part of it.

The photo of Dr. Rubin is from a tribute to him published in the July, 2013 issue of Diabetes Care.

Jinxed

Laddie_Head SquareSometimes I jinx myself.

It seems that every time I write a post or just look in the mirror and think “Wow!  Things sure have been going well…” my blood sugar decides to go off on wild bumper car excursions.  Sometimes I can blame myself for the results–oh yes, I shouldn’t have had that double bowl of chocolate ice cream last night–but just as often it’s just one of those things.  It’s a reminder that hard work and good decisions usually lead to good results but that every so often diabetes throws a temper tantrum trying to remind me who’s in charge.

I get oodles of motivation when I do things right and I get good results.  However, when I think that I have done things correctly and I get bad results, I am very quick to say “What the hell!” and go off the deep end with bad decisions.

When the numbers are good, it’s easy to think that I am in control of everything that affects my blood sugar.  I can take my insulin adhering to all of the preset and tested ratios in my pump.  I can show incredible willpower and have an egg and spinach omelet for breakfast when I am starved for a bowl of cereal with bananas and milk.  Oh, how I do miss cereal for breakfast.

Things Going WellWhen the numbers are bad, I usually blame myself.  If I take responsibility for the good numbers, it seems logical that I should take credit for the bad numbers.  But there are times that I eat a low carb breakfast with an appropriate insulin bolus and my blood sugar soars into the 200’s.  If I understand correctly what books tell me, some of these morning blood sugar excursions are the result of hormones screaming at my liver to pump out glucose at the same time they try to interfere with the action of my insulin.  But where were those hormones yesterday and the day before when my body thought the same breakfast was hunky-dory and my numbers were great all morning.

Recently I participated in a study that was investigating whether blood sugar rises at the end of the two or three day life of a pump infusion site.  Today was the third day of what has been a fine infusion site, but when I was high through much of the day, I changed out the set.  My problem is that I usually go high when I have a new infusion set.  So I was high because of the old set and then high because of the new set.

So today I am ranting.  Highs are much more enjoyable when you have the guilty memory of a hot fudge sundae.  But I have been doing a really good job of eating low carb lately and totally ignoring the call of chocolate covered donuts.  So this isn’t fair.  You mean diabetes doesn’t play fair!  Wow, that’s not very nice.

My Take on Dr. Bernstein

Laddie_Head SquareI strongly believe that everyone with diabetes of any type should read Dr. Bernstein’s Diabetes Solution: A Complete Guide to Achieving Normal Blood Sugars.  I am neither advocating that you follow his teachings to the letter nor am I even suggesting that you try his WOE (way of eating).  But I believe that you should read the book.

Dr. Bernstein was diagnosed with diabetes in 1946 at the age of 12.  He indicates that for over two decades “I was an ‘ordinary’ diabetic, dutifully following doctor’s orders….”  In his twenties and thirties he began to experience significant complications including deteriorating vision, kidney disease, neuropathy, and cardiomyopathy.  During those years the medical community began to link high blood cholesterol to heart disease and it was a widespread belief that high amounts of dietary fat were the cause of this elevated cholesterol.  Therefore like many diabetics then and now, he was prescribed a low-fat, high-carbohydrate diet.

In 1969 Dr. Bernstein’s life changed dramatically when he saw an advertisement for a new device that hospital emergency rooms could use to test blood sugar levels to distinguish “unconscious diabetics” from “unconscious drunks.”  Although he was prohibited from buying the $650 device because he was not a doctor, his wife was a physician and she placed the order.  He began to use this device and went down in history as the first patient with diabetes to use a home blood glucose meter.  For a fascinating peak into the history of Blood Glucose meters, I encourage you to read David Mendoza’s interviews with four pioneers, including “Dick” Bernstein, who were instrumental in the development and ultimate widespread use of these meters.

Using his new meter, Dr. Bernstein quickly learned was that his blood sugars resembled a roller coaster with daily lows in the 40’s and highs in the 400’s.  Over the next four years he experimented with changes to his eating and insulin regimen that significantly improved his blood glucose levels and slowly eliminated many of the diabetic complications he had been experiencing.  Ultimately he developed a road-map to a destination that was “normal” blood sugars.  In order to have his ideas taken seriously, he attended medical school starting in 1979.  At almost 80 years of age, Dr. Bernstein continues to have a thriving medical practice and numerous publications describing his methods for controlling blood sugars.

Bernstein Book CoverThe foundation for Dr. Bernstein’s regimen is a strict diet with a limit of 30 grams of carbohydrates per day.  He has strong opinions about what types of insulins should be used and is a fervent opponent of insulin pumps.  The guiding principle in his teachings is “the law of small numbers” where if you eat small amounts of carbohydrates along with small amounts of insulin, you will have only small mistakes not big mistakes.  Dr. Bernstein sees the world in black and white with very few allowances for variance from his plan.  If you read his book, you will be given a detailed prescription for reaching the nirvana of “normal” blood sugars.

Dr. Bernstein has many followers who credit him with saving their lives and they follow his diet and other teachings to a tee.  There is an active forum with discussions about the Bernstein diet and philosophy.  There are also many people, and this probably includes me, who adopt some of his ideas with less stringent goals and see significant improvement in BG numbers.  Although he is still dismissed by much of the medical community as an extremist or even a quack, some of his ideas are becoming mainstream with the increased acceptance of low carb diets and lower A1c targets for people with diabetes.

Although few of us can live the Bernstein life perfectly and most of us don’t even want to try, why do I believe that everyone with diabetes should read this book?  The answer is  because the strongest message that comes out of the book is that you can successfully control your diabetes.  You are not a helpless victim destined for continual high and low bloods sugars along with a myriad of complications.  You have the power to make decisions that will improve your blood glucose numbers.  You can set goals and take steps to achieve those goals.  Some of the necessary changes will not be easy to incorporate into your life.  However, if improved blood sugars are a high priority, you can do it.

You are in control.  That is a powerful and inspiring message and that is why you should read the book.

Dr. Bernstein’s Diabetes Solution was first published in 1997.  The 4th and most current edition was released in 2011.