The Great Divide in the DOC

Posted on September 19, 2013 by Laddie

I’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 superhero 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.

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!

Food

Posted on September 12, 2013 by Laddie

Very 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.

I 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.

Jinxed

Posted on September 5, 2013 by Laddie

Sometimes 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.

When 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

Posted on September 3, 2013 by Laddie

I 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.

The 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 are multiple Facebook and other online groups 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.

Sunlight and the Dex G4: A Bad Mix

Posted on August 29, 2013 by Laddie

I’ll start this post by saying that I am very happy with my Dexcom G4. It is by far the most accurate of the CGMs that I have used, the previous two being the Medtronic Sof-Sensor and the Dexcom 7+.

But I think that it has one serious problem and I am surprised at how little I have seen written about it.

The G4 has a beautiful color screen and uses yellow for highs, white for in-range readings, and red for lows. When I hike in Arizona and am in bright sunlight with little or no access to shade, I cannot read anything on my Dexcom that is in red. I can see the white numbers the best and can vaguely see the yellow numbers. But even when I put my receiver in the skimpy shade of a desert bush and use my hand to shield the receiver as much as I can, I cannot see the red numbers or read the red low alert screen. My glasses have transition lenses which turn dark in the sun, but I think that it is a reasonable expectation that people spending time outside will be wearing sunglasses.

So when I am hiking with my G4, how do I know that I am low? I can see the white numbers fairly well and the yellow numbers a little less well. So if I can’t see the number at all, then I must be low! I don’t think that is exactly how the CGM is supposed to work…

When my Dex alerts me to a low, I know I need to test and take action. My alert threshold is set at 70. Does the current alert mean my BG is 69 and a glucose tab or two will take care of the problem? Or is it 49 and I’m in danger of falling off a cliff? I can’t answer that question because I can’t read the number. When I’ve been in bright light for a long time, it is also difficult to see the directional arrows to know if my BG is dropping, stable, or rising.

I’m sure the idea of using red for lows was thought to be a good one because red is often associated with danger and emergencies. Unfortunately testing of the screen readability must have taken place in a lab not out in harsh sunny conditions. I wrote a long email to Dexcom about this problem and never received a response. I will call them soon just to get the problem on record. I can see things on my iPhone screen in the sun, including red text, so a fix of this issue is not an insurmountable problem. An easier fix might be to stop using red for any of the vital information.

There is a December 2012 thread in the TuDiabetes Dexcom Users group about this issue and I bumped it up on Monday to see if others ran into the problem this summer and there are a few new responses. The original author of the thread was a cyclist who couldn’t see her G4 numbers and arrows without getting off the bike and moving into the shade. As she said, this wasn’t a good option for races.

Is anyone else having this problem? Any suggestions or solutions?

Part 2: The Times They Are A-Changin’

Posted on August 26, 2013 by Laddie

The first part of this series focused on change coming as a result of the Affordable Care Act. This post will discuss one change that has already occurred in my healthcare universe and how I expect it to impact my care.

Late in 2012 I received a notice from my internal medicine clinic that they were switching to a cash-only model starting on April 15, 2013. The primary reason for the change was stated: “The present insurance environment reimburses independent clinics less than large, corporate practices. To continue to provide the high quality care that you have come to expect at our office, we need to change our business model.”

Initially I panicked because I thought I was going to be forced to leave a doctor whom I like and respect. Doing my homework I learned that my insurance will cover visits to this clinic, but it will be as an out-of-network benefit and I will have to file the claims myself. The out-of-network provision means that any difference between the billed amount and the charges allowed by my insurance company will be my responsibility.

There are actually 3 options for continuing my relationship with this practice. The first is a straight fee-for-service plan where office visits are billed based on time and lab/procedure fees are reasonable because they lack the high mark-ups traditionally billed to insurance companies.

The second option is a fee-for-service plan with a $300 annual fee for “Enhanced Primary Care.” This plan provides access to my doctor through phone, email, texts and online care.

The third option is a Comprehensive Care plan where everything including office/hospital visits, labs, EKGs, phone consults and emails is covered for a fee of $2500. This option is basically concierge medicine as shown on the TV show Royal Pains (USA Network) minus the mansions, sports cars, helicopters, and obnoxious brother.

After some thought, I decided that my initial panic was unfounded and that I should not make any changes for the foreseeable future. One reason is that my current insurance through the high-risk pool in Minnesota will disappear in 2014 when insurance companies can no longer refuse me coverage because of Type 1 diabetes. It seemed silly to find a new internist in 2013 and risk having to change again in 2014.

A second reason is that in recent years I have only seen my internist once a year for a physical. Despite being the queen of autoimmune chronic conditions for which I see specialists, I’m pretty healthy otherwise. I figure that if I have no significant changes in my health status, there is no major financial risk to staying with this practice. As I choose insurance in the coming years, I will need to be sure that I have coverage for out-of-network physicians even if it is with a higher co-pay than in-network doctors.

A third reason is that I will be on Medicare in less than four years. Although this clinic will be cash-only for regular insurance, it will continue to accept Medicare. There is a caveat with this acceptance. In order to stay in the practice with Medicare, you are required to pay the annual Enhanced Primary Care fee of $300. I am okay with this fee and understand the necessity for it. Medicare reimbursement is often ridiculously low or nonexistent for many services. I realize that my doctors and their staff need to make a living wage in order for the practice to thrive. Also the telephone consults and online benefits included in that fee will be beneficial.

I have an appointment for my annual physical in three weeks and this will be my first visit under the new cash-only model. I have selected the fee-for-service option because currently I don’t need the benefits of the Enhanced Primary Care or Comprehensive Care models.

Although I was initially frightened by these changes, I am starting to be more comfortable with the idea of a different financial relationship with my internist. In many ways I think that this change may end up ensuring that I have better medical care in the coming years.

Each of the five physicians in the practice has a personal statement on their website explaining his view of the transition to a fee-for-service model and his future in medicine. My doctor ended his statement with the following words:

“The decision to no longer accept insurance is the change we needed to make. It was a very difficult one…. I hope that our sensible pricing system reflecting the service and follow-up provided will be understood as necessary to keep our practice viable. I believe that the new care opportunities for visits and consults, telephone and email, will result in better services and allow us to continue to provide the type of care our patients expect and deserve for many years to come.

I always knew I wanted to be a doctor. I still do. With the patient as my primary focus. Practicing medicine the way it was meant to be practiced.”

Those of the words of a physician that I am pleased to call “my doctor” and I hope that his decision to take the insurance company out of the equation will be a good decision for both of us.

Part 1: The Times They Are A-Changin’

Posted on August 22, 2013 by Laddie

When Bob Dylan wrote this song, I think that he was writing about civil rights, history, and the idea that change is coming whether you want it or not. Sounds a lot like the Affordable Care Act. Some of the provisions in this bill have already been enacted and we’ve seen increased coverage for preventative care and the ability for young adults to stay covered under their parents’ insurance until age 26. But there are still big changes to come in 2014.

I have always had good insurance and know that I am very lucky. In general I have been isolated from changes affecting “other” people. My current insurance is through the high-risk pool in Minnesota. It is expensive but the coverage is very good.

I am 61 years old and a synonym for my insurance in the coming years is going to be “change.” Starting in 2014, I will purchase insurance through the MNsure Marketplace which is the health exchange set up in Minnesota as a result of the Affordable Care Act. Right now I see nothing that indicates that I will get either cost savings or better coverage. Using the calculator on the MNsure website, it looks as though my premiums will go up about $150 per month. However that is not an apples and oranges comparison. I currently have a high deductible plan along with a Health Savings Account and the calculated amount from MNsure is for a “silver” plan with little information on the details. So it is a waste of energy to spend much time thinking about this until the exact details are available in October.

I think that the hardest part about selecting a plan in the fall will be knowing exactly what my coverage will be. Things like office visits and doctor fees will be easy to decipher. As someone with Type 1 diabetes in Minnesota, it is unlikely that I will have to worry about coverage for my insulin pump.

But coverage for my Dexcom Continuous Glucose Monitor (CGM) will be problematic at best. I have used a CGM for 5 years, so how do I prove that I need it? I haven’t had a severe low requiring paramedics in ages. I haven’t been having severe overnight lows. I can hardly remember the last time I even needed my husband to get me some juice. And why is that?

Because I use a CGM.

I suppose I can keep track of how many times the Dex alerts me to lows. I can count the times it wakes me up at night to tell me my BG is 70 or dropping fast. Although I always want to ignore these alerts and go back to sleep, I am very good at eating some glucose tabs from my bedside table and programming a temporary basal of zero on my pump for an hour. I never correct a high without testing and most of the time confirm a low with a test before eating glucose tabs. But I never do nothing. Like many Type 1’s who use a CGM, I rarely have a night that it is not alerting me to something. It’s a nagging parent and I don’t ignore it.

Another question will be test strip coverage. My insurance has always provided me with the number of strips prescribed by my endocrinologist. How will I be able to tell if my new insurance will do so? And then we get to the issue of what brands of strips will be provided. Will I know what the drug and supply formulary is before I select an insurance plan?

Speaking of the drug formulary, will I know what brands of insulin are covered? Will my current insulin type be covered at a higher tier or maybe not covered at all? Frequently I read blogs and message board posts by people being forced to change insulin types because of a formulary change by their insurance company. To many decision makers at insurance companies, all fast-acting insulins are the same. Those of us who use them know that the different chemical compositions and additives can make a big difference in our control and potential allergic reactions.

This fall I will be making a big decision about insurance. I have started a list of questions to address as I compare plans. I hope that I will have enough information to answer those questions. Even if I don’t, I will have to make a choice and keep my fingers crossed that it is a good decision.

Change is coming and there is no exit off this freeway.

It’s Not My Fault?!

Posted on August 15, 2013 by Laddie

My mother was not a hoarder. In fact, if there is anything that is the opposite of a hoarder, that is what my mother was. She threw away everything. Therefore I don’t have much stuff from my childhood.

But I do have my report cards. All of them starting in first grade.

So what does this have to do with Diabetes?

My 1st Grade teacher wrote a comment that I had a hard time accepting mistakes and always blamed them on someone or something else.

Fast forward to Type 1 Diabetes. I do fine with comorbidities. Those are the things that go along with Type 1 Diabetes but are not caused by diabetes. I have hypothyroidism. It is not a result of abnormal blood sugar, but rather the same autoimmune process that destroyed my beta cells. It is something that I could have done nothing to avoid. It is not my fault and I accept it openly and without guilt.

Similarly I have an autoimmune form of arthritis. No guilt. You can’t blame me. It’s a result of my rogue immune system. Same with a skin condition I have that comes and goes.

I am on my third frozen shoulder and that enters the murky area between complication and comorbidity. The exact cause of frozen shoulder is not known. One theory for why people with diabetes get it at a higher rate than the rest of the population is that high blood glucose causes an abnormal thickening of the collagen and fibrous material in our tendons and ligaments. But other conditions such as age, hypothyroidism, Parkinson’s disease, and having a recent shoulder injury are culprits in the onset of this painful condition. Ironically two of my frozen shoulders have come during periods when I had extremely low A1c’s, so there is definitely more to it than BG levels. But at the same time I could never argue that I have normal blood sugar so the collagen theory makes sense.

Currently I have none of the complications of Type 1 that are commonly considered to be the result of high blood sugar levels. No kidney disease, no retinopathy, no neuropathy. Ha! I’m free of complications and nothing is my fault.

The problem with that logic is that if you turn it around, you point your finger at those with complications and say it was “their fault.” We all know how hurtful and untrue that remark is. And as hard as I work to control my diabetes, I don’t know that one of those things won’t be on my plate next week.

Diabetes does not play fair. For whatever reason, some people get multiple complications and others seem to remain relatively unscathed. Sure, studies show that lower A1c’s increase our odds of good health and that gives most of us motivation to fight the diabetes battle every day. But good A1c’s are not a guarantee against complications and diabetes does not sign a contract promising good outcomes for every individual.

So where am I when it comes to blaming other things and other people? I have come a long way since 1st Grade and work hard to accept responsibility where appropriate. The idea that comorbidities are easier to accept than complications is still part of me even though intellectually I think it is mostly a meaningless distinction. When my rheumatologist confirmed in May that I was indeed dealing with frozen shoulder again, his first question was “What is your A1c?” I was surprised that my first reaction was being defensive that he thought it was “my fault.”

This post has become riddled with terms such as comorbidity, complication, fault, blame, responsibility. Those are words that never leave our Type 1 brains.

One of the best discussions about the line between blame and responsibility was in a 2/25/13 post by George at Ninjabetic.com. You should read the whole post, but what has stuck in my head are these words:

“Sometimes it is good to remember that this stuff is my responsibility but not all my fault. That is the difference. It’s not my fault that I have diabetes. It’s not my fault my body doesn’t do what it’s supposed to.

But to not take care of my responsibilities and to allow bad things to happen to my body because of negligence is my fault.

The line is thin but there is a difference between the two.”

Thanks to George, there is not much else to say on the subject.

An Interview With My Sister

Posted on August 12, 2013 by Laddie

More than once when writing about my relationship to the Diabetes Online Community (DOC), I have mentioned that I spent a huge part of my Type 1 Diabetes life knowing no one else with diabetes. That is not completely true. My older sister has Type 1.

So why do I keep forgetting that?

We have never lived closer than 1000 miles apart since our diagnoses. We were both diagnosed as adults at a time that long preceded personal computers and online communities. We periodically talk about diabetes on the phone or during infrequent family gatherings–mostly weddings and funerals. Although we like each other just fine, we are just not part of each other’s day-to-day lives, diabetes or otherwise.

So when it came time this summer for a long-planned family vacation and I am now blogging about diabetes, I decided that it would be fitting to interview my sister. I figured that I would learn as much as my readers will. My bribe of a late afternoon piña colada sealed the deal.

I did not tape the interview, so her answers are in my words and accompanied by my comments about her answers.

I was diagnosed in 1976 at age 24. When were you diagnosed and how old were you? I don’t know the exact date, but I was diagnosed in the winter of 1981 at age 31.

Comment: I was able to find out my exact diagnosis date by contacting my hospital. My sister has no interest in doing so.

Tell me about your diagnosis. I had been going to the doctor for six months with nonspecific symptoms and receiving no diagnosis or care plan. I came back from a business trip and was so ill that I could barely make it home. I called the doctor and was told I probably had a virus. Feeling worse in the morning, I went to the doctor’s office and remember the nurse saying “You didn’t tell me that you couldn’t breathe.” I remember nothing more until a few days later when I regained consciousness in the ICU.

Comment: We also discussed how she felt in retrospect that in the months preceding her diagnosis her doctor had only considered the possibility of Type 2 diabetes. I was immediately diagnosed at my first doctor visit and was never once treated as though I might be anything other than a Type 1. Was the difference because I was in my mid-20’s and she was over 30? Was it the speed of onset? Was it a different doctor and a different city? Or just good luck for me and bad luck for her?

What has been the hardest part of a Type 1 for you. The lows, especially since I live alone.

Comment: One of the hardest parts of dealing with Type 1 is that insulin which keeps us alive is the thing that can kill us. Most outsiders think that shots are the worst part of diabetes, but I agree with my sister that the lows are the worst.

Have you ever participated in the DOC? No. Do you even know what it is? No. Now that your sister has a blog, will you read it? Maybe, if you send me the link again.

I have several other autoimmune conditions. Do you? No. I do have high blood pressure and take meds for that. Other than that, it’s just insulin.

Comment: I have several other autoimmune conditions such as hypothyroidism and an inflammatory type of arthritis. But I don’t have high BP.

You have always been more open about your diabetes than I have. You took injections in the kitchen while I always went to the bathroom. Did you notice this? No. What are your opinions on this? It’s something I have to do and it’s no big deal. It’s who I am.

Comment: I am more open about my diabetes than I used to be. I’ve been on a pump for nine years so the issue of injecting in front of others is moot. I probably still wouldn’t be as blasé about it as my sister is.

As you consider the future, what are you afraid of in terms of diabetes and your health? Nothing.

Comment: When I mentioned my fear of being in a nursing home and being killed with too much insulin or bring forced to run high all the time, my sister said her hope is to have something massive like a heart attack kill her before she gets to that point. I think we all hope to stay healthy up to the point of death, but most of us don’t get that opportunity.

What else we discussed: When asked about a pump or a CGM, my sister said that she is not going there and she doesn’t want to deal with the technology. She uses Lantus now only because she was forced to switch a few years ago when Ultralente stopped being manufactured and her stockpile ran dry. She still uses Regular instead of a rapid insulin. I always laugh and tell her how much better things could be if she investigated some of the newer insulins and technology. But I don’t nag because her medical decisions are not my business. She does admit that when she retires in a few months she will start seeing a new endocrinologist. She will not be surprised if the new endo pressures her to make some changes.

My A1c is much lower than that of my sister. However, after decades of Type 1 we’re both relatively healthy. I would have a hard time arguing that I am substantially more healthy than she is. I do lead a much more physically active life than she does and maybe her regimen would not work for her if she tried to do what I do. But that’s only supposition.

Summary: Although our care regimens couldn’t be more different in terms of technology and results as measured by numbers, I think that we are definitely on the same page when it comes to the goals for our diabetes care. As my sister so eloquently summarized at the end of the interview: “My aim is to manage my diabetes so that every day in my life is a wonderful day.”

I’ll second that any day.

Rest in Peace, My Dexcom Transmitter

Posted on August 5, 2013 by Laddie

In early June my friend Katie at Diabetic Advocate wrote about the death of her Dexcom G4 transmitter. Because many of us got the G4 within a month of each other in October and November, my assumption is that we will soon be seeing a lot of posts about dead transmitters which only carry a 6-month warranty. Sad to say I did not follow Katie’s advice to order a new transmitter as soon as I passed the 6-month mark.

Fast forward to mid-July when I was scheduled to leave for a week-long international vacation. Three days before the trip, I got a series of Out-of-Range symbols with no readings for several hours each. This was with my receiver in my pocket about 3 inches away from the transmitter. When the sensor would reconnect, it said my battery was OK. But then it would quickly go back to the no-transmission mode. It was obvious that the grim reaper was hovering around my transmitter.

I had expected that I would receive more warning that my battery was failing. Unfortunately I went from a perfect transmitter to a defunct one in a period of two days. I am used to the battery icon on my pump that goes from full charge, to 3/4 charge, to 1/2 charge. Well, that is not how my G4 transmitter failed. There was no message that “I am working perfectly now, but I am feeling low.” It was “Hey, you stupid lady, you should have replaced me last month when I reached six months old.”

Because I did not have time to replace the transmitter before I went on vacation, I left my Dexcom home. The first night in a strange condo in another country, I woke up at 2:00 AM with a BG of 37. Oh yes, there is a reason that I use a CGM. I hadn’t seen a BG in the 30’s in months. That’s how good my Dexcom G4 is at doing its job.

On one hand, it was probably fine that I was without my G4 on this vacation. We were at the beach with water activities from dawn to dusk. It was likely that I would have forgotten my non-waterproof G4 receiver in my pocket and ruined it in the ocean or pool. But I did miss the early warnings of highs and lows that the G4 provides me.

The morning after I returned from vacation, I contacted Dexcom and Edgepark to order my new transmitter. No, actually it was a whole new Dexcom G4 system because I was out of warranty.

I want you to take away two things from this post.

First, you might not get much warning that your transmitter is going bad. If you are past six months, order the new one so that you will not have the two-week delay that I had in getting my new transmitter.

Secondly and very importantly, if you paid for the upgrade to the Dexcom G4 out-of-pocket, know that your warranty only goes to the date that your 7+ system was warrantied for. It is not based on the date you purchased your G4. For me, my Dexcom 7+ had been replaced in June 2012. I paid out-of-pocket for the upgrade to the G4 in November 2012. So my warranty expiration happened in June, not November.

I am lucky that I have good insurance and I have had very good results working with Edgepark. I know that some people will carry their hate of Edgepark to their grave, but they have always provided me with excellent service. I called Edgepark the day after I got home from vacation and had the new Dexcom system in hand 5 days later.

My pockets are full again. My pump in my left pocket. My glucose tabs are in the leg pocket of my cargo pants. My Dexcom G4 is in my right pocket. And phone, you’re back in the purse because I have no pockets left!

Test Guess and Go

Even with testing, diabetes is a guess every day.

Author Archives: Laddie