A Blogging Vacation

Laddie_Head SquareI’ve been on a blogging vacation. It wasn’t intentional, but one missed post turned into another missed post. And another missed post. Before I knew it, my twice weekly postings had turned into none. Blogs aren’t supposed to be a burden, so I’m not feeling too guilty. Unfortunately my blogging vacation has been accompanied by a lapse in my diabetes care.  A few (well, maybe a lot of) bad decisions along with infusion set problems have resulted in a series of days (weeks?) with less than optimal numbers.

My diabetes care is never perfect, but for the most part I do pretty well and spend a lot of time in my “target range”.  For much of the last year I have had success with a low carb diet (most of the time) and an insulin regimen that has controlled my morning blood sugar spikes (most of the time). So what has thrown everything out of balance?

A little bit of this and a little bit of that.

Balance is the hardest part of Type 1 diabetes. Without a functioning pancreas, our bodies have no sense of equilibrium. We live on a tightrope where good numbers are a small step from catastrophic lows and higher numbers seem to send the glucocoaster spiraling out of control. It’s the reality that everything today is connected to everything yesterday and will influence everything tomorrow.

I eat a couple of chocolate chunk cookies. Okay, they are the (huge!) chocolate chunk cookies (delicious!) from Costco. I take a boatload of insulin and my BG numbers seem to stay in check. But at 2:00AM my Dexcom screams that my BG is high and rising quickly.  I program a correction dose into my pump and unfortunately wake up with a low at 6:00AM. Two glucose tabs and before I know it, I’m back to 180 and rising quickly. I test frequently and take enough insulin to vanquish two plates of pancakes, a banana split, and half a loaf of Wonder Bread. But wait, I didn’t eat any of those things. I either ate nothing or my normal 17 carb breakfast of Greek yogurt and apple or blueberries. The dog walk that usually prevents huge post-breakfast BG spikes is rewarded with numbers in the 200’s.

My endocrinologist claims that overnight lows result in hormones that ultimately cause highs. I think she’s right because the more overnight lows I have, the more daytime highs I see. The more I correct the highs, the more I end up low. Dexcom tracings that resemble the Himalayas multiply rapidly and refuse to give way to somewhat gentler blood glucose slopes.

The cookies are long gone and the sweet, yummy, chocolaty taste is a pleasant guilt-laden memory.  The problem is that my diabetes remembers the indiscretions and even when I’m eating a judiciously low-carb meal, my body is quick to spike and quick to crash. Add frustration and diabetes burnout to the mix and it’s hard to get back on the straight and narrow.

Dexcom Tracing

Mixed in with things I can control are things like infusion set failures. I have used angled sets (Silhouettes and Comfort Shorts) successfully for most of my pumping life. Skin problems, inflammation at pump sites, and insertion pain have motivated me to explore other types of sets. In my last supply order, I included a box of Insets and a box of Cleos. I started with the Insets and loved the pain-free insertion.  Since I weigh a little more than the last time I used 90-degree sets, I was encouraged by the performance of the first 9 sets with no pain, no failures, and all of them lasting 3 days. Then came #10. It was a blast from the past with an absolute failure five hours after insertion. I rarely get insulin blockages with angled sets. This site failure reminded me why I had quit using Quick Sets ten years ago and learned to live with the horrible insertion needles of angled sets. I’ll use the box of Cleo’s and probably go back to Comfort Shorts. I can stand a little pain and inflammation to have reliable insulin delivery.

After covering a lot of subjects here without much sense of direction, I’ll wrap up by saying that I’m back to blogging after a brief hiatus. Judging from the last two days, I think my diabetes care is back on track. In many ways these two things go hand-in-hand because they are reflections of how much diabetes is like a spoiled child who demands all of our attention and won’t settle for less than 100%. Not even when you want a vacation….

A Springtime Walk in Arizona

I just couldn’t do diabetes today. As much as I like blogging, sometimes I think it is a bit twisted to write long posts about diabetes a couple times a week. So today I am expanding my WordPress skills and for the first time using a photo gallery in a blogpost.

After sending my husband off to the airport this morning to head back to Minnesota, I took Abby the Black Lab for a walk around my Arizona neighborhood. I hope the beautiful photos I took will brighten the day of those of you in northern climates. If it’s too painful to watch, keep in mind for next year that I have a guest room.

If the short slideshow does not begin automatically, hover your mouse over the photo and click the arrow. When you can’t stand it anymore and want to return to your world of cold and slush, click on pause.

This slideshow requires JavaScript.

Diabetes Cookbooks: A First Time for Everything



Laddie_Head SquareTwo weeks ago I was having a glass of wine with some girlfriends and one of them asked: “When was the last time that you did something for the first time?” I did not have to think for very long to come up with an answer.

The one thing that I have done in recent weeks that was a first time experience for me was to use a diabetes cookbook.  Actually not just one cookbook, but two.  I have had diabetes for 37 years and until recently, I have never owned nor used a cookbook that was intended for people with diabetes.  I may have cut out a few recipes from magazines like Diabetes Forecast or Diabetes Health, but I don’t think I ever fixed any of them.

You might wonder whether I have anything against diabetes cookbooks.  I don’t think so. In general I’m not very interested in cookbooks and most of the cookbooks I own were gifts or purchased to support a fund-raising project. I don’t like to cook and I keep waiting for my husband to have a mid-life crisis and decide that he would like to be a chef. Unfortunately that doesn’t seem to be on his agenda.  My guess is that newly-diagnosed diabetics are a big market for cookbooks, but when I was diagnosed in the 1970’s, I wasn’t carb counting and didn’t need the nutritional analysis that is now contained in diabetes cookbooks.

When I decided to go outside my comfort zone and review two ADA cookbooks, I actually got excited about doing it the “right way”.  For me that meant choosing 4 or 5 recipes from each cookbook and following them exactly. (I have a bad habit of altering recipes and then wondering why they are not as good as advertised.) It also meant using the carb counts as provided and evaluating whether the nutrition info was a helpful tool in my diabetes life.

3D Family ClassicsThe first cookbook I delved into was the ADA standard bearer titled The Family Classics Diabetes Cookbook.  This is a collection of 140 “favorite” recipes from Diabetes Forecast Magazine.  My overall impression was that this is a well-organized cookbook with beautiful photographs and clear detailed instructions.  There is a good mixture of standard favorites such as Old-Fashioned Beef Stew, Classic Potatoes Au Gratin, and Classic Baked Artichoke Dip along with newer-style recipes such as Chickpea Tabbouleh, Tilapia Tacos, and Zesty Broccolini and Garlic.

I tried five recipes from this cookbook.  My two favorites and recipes that I will make again were Fresh Greens Soup with White Beans, Basil, and Tomatoes and Provencal Zucchini and Yellow Squash Medley.  Two other recipes were just fine and maybe worth repeating.  I only disliked one recipe and it was because of ingredient substitutions designed to make the recipe lower in fat than the original dish.

That leads me to a discussion of the “dietary philosophy” of this book.  The recipes are consistent with traditional ADA clinical guidelines prescribing a “heart healthy” diet with an emphasis on eating low-fat with a significant number of calories coming from healthy carbohydrates. This cookbook was published in 2012 and precedes the ADA’s 2013 acknowledgement that low-carb diets might be a successful tool for weight loss and diabetes management. Although the ADA has modified its stance on dietary recommendations, most physicians still advise their patients to follow a traditional low-fat diet.  Therefore this cookbook is a good resource for good food with a low-fat emphasis.  There are also some good recipes that are not high in carbohydrates if that is your preference.

3D Smart ShopperThe second cookbook that I tried out was The Smart Shopper Diabetes Cookbook. This cookbook by Robyn Webb, MS was filled with quick and easy recipes designed to be “stress-free” by using ingredients “from the Deli Counter, Freezer, Salad Bar, and Grocery Shelves”.  This book was published in 2013 and Webb’s introduction addresses the idea that there is no “one-size-fits-all nutritional approach for people with diabetes.”  She attempts to provide a variety of recipes that emphasize healthy fats, high fiber, varying amounts of carbohydrates, and lots of flavor.  Detailed nutritional information for each recipe is provided so that you can make up your own mind about which recipes are appropriate for your meal plan.

Because I am generally a lazy cook, I liked some of the short-cuts she used to make a healthy meal without too much time in the kitchen.  My favorite recipe was Chicken, Artichoke, and Spinach Soup with a close second-place finish for Mexican Chicken.  The other 2 recipes that I tried were fine, but I would probably try another new recipe before repeating them.  And there are definitely a few other recipes that are on my list to try:  Rosemary Turkey Salad and Salmon with Blueberry Salsa.

One thing that I liked, but haven’t used yet was the daily menus provided at the end of the book.  I find that when I want to experiment with a new style of eating, it is helpful to start with a structured program with daily menus.  Just follow the rules and don’t think too much.  These menus very much remind me of the balanced diet that was the basis of the Exchange System that I used in the first half of my diabetes life.  Although I carb count now, I still think in blocks of 15 grams and really feel that the Exchange System was not a bad way to eat.

Summary:  I enjoyed trying new recipes and expanding my normal dinner options beyond meat and vegetables cooked with little creativity.  The carbohydrate counts provided were helpful and saved me a little time.  At the same time, none of the measurements in either book were provided in grams, so I was stuck with guessing at what is the ubiquitous “medium banana” or “large onion.” Because I selected relatively low carb recipes to try, I was comfortable with guessing at some of the quantities.

I am very impressed with Robyn Webb, MS and would love to see the ADA publish a Low Carb cookbook with her input.  Although I am not perfect in living a low carb lifestyle, I am convinced that it makes my diabetes life easier and I would love to infuse some creativity into my menus.  I’ve definitely found some “keeper” recipes in the two ADA cookbooks that I explored.  But a whole low-carb cookbook would be fabulous and I would buy it in a minute.

If you would like to purchase the cookbooks that I reviewed or any other books in the American Diabetes Association Store, please go to this link:  http://www.shopdiabetes.org/  Also, Amy Tenderich at Diabetes Mine recently reviewed and raved about another ADA cookbook titled The Mediterranean Diabetes Cookbook.  To read her review, click here.


Sue B_Head SquareUNFAVORABLE….a word that I really didn’t expect to see. Eight long months of waiting for a decision and when it finally came, it was UNFAVORABLE.

In June of 2012, my husband Marc, a Type 1 diabetic with hypo and hyperglycemic unawareness, entered the Medicare system. A few months later, his Continuous Glucose Monitor (CGM) malfunctioned and needed replacement. His private insurance had always paid for the CGM and sensors without any question, and it never occurred to us that Medicare wouldn’t pay as well. We were wrong. Soon after his endocrinologist sent in the prescription for a new CGM, we were notified that our supplemental insurance, Highmark Freedom Blue, had denied coverage because under Medicare guidelines, CGM is “precautionary” and not covered. Thus began the long road through the Appeals process.

I have been writing of this journey for the past eight months on this blog site. We went through Levels 1 and 2 rather quickly, but Level 3 with an Administrative Law Judge (ALJ) was frustrating to the point of wanting to pull out our hair. There are approximately fifty-six ALJ’s spread throughout the United States and most of the hearings are by telephone. Our telephone hearing was on June 26, 2013. Prior to that date, we sent the ALJ documentation that included a graph of Marc’s blood sugar over a period of a month and various research articles from experts in CGMS. Also included were our statements explaining how our lives had been before the CGM and how they had improved once Marc had a CGM. And then of course, we described how our lives had reverted back to what it was in the pre-CGM days. We also sent a letter from Marc’s endocrinologist explaining how the CGM works and the importance of Marc having one. More details of this story are outlined in my blogpost “A Crusader for Medicare Coverage of CGM”.

We had our telephone hearing in Marc’s endocrinologist’s office. Marc, his endocrinologist, and I all testified. I wrote about this in my “Dear Judge Smith” post and described the frustration we experienced in the months waiting for the Decision to be made. When I wrote that blogpost, we had already been waiting four months. During the next four months, I periodically called the Judge’s Legal Assistant and practically begged for help. Each time I was told that he was not able to divulge any information, that it was on a first come, first serve basis, and that our decision was in “queue” waiting to be drafted.

On Tuesday, February 25th, after eight very long months of waiting, the decision finally came. I was expecting a FULLY FAVORABLE DECISION. I had seen at least five FULLY FAVORABLE DECISIONS from other people whom I had been in contact with over the past months. Their cases were so similar to my husbands that I thought there could be no other decision. Much to my surprise, when I opened the envelope and pulled out my husband’s decision, it was an UNFAVORABLE one. The Judge stated:

While very sympathetic to the appellant’s medical conditions, the ALJ finds that in accordance with guidelines presented in L11520 and Medicare Advantage Medical Policy Bulletin Number E-15, the plan is not required to preauthorize or cover a continuous glucose blood monitor and accessories, because the device is not covered under Medicare’s rules and regulations or otherwise under the EOC.”

The Judge acknowledged that the “appellant has brittle diabetes, and hypoglycemia and hyperglycemia unawareness. His diabetes is difficult to control and his blood glucose fluctuates widely. He has used a continuous glucose monitor for several years prior to enrolling in Medicare. The appellant’s glucose monitor was covered under his private insurance policy with Highmark Blue Shield prior to enrolling in Medicare”.

I understand his statement. However, I have a copy of a different Judge’s decision in a similar case and his ruling was:

“Policy Article A33614 calls continuous blood glucose monitoring “precautionary. The logic of this Policy Article is flawed in this respect and I decline to follow it”. He then goes on to say that “After all, isn’t all blood glucose testing precautionary whether using a continuous blood glucose monitoring system or glucose meter and test strips—as both methods can only tell you that your blood sugar is too high or too low or normal.” He continues “Still further, while the device could arguably be classified as “precautionary” (at least in those instances where the reading is not hypoglycemic or hyperglycemic) they are no more precautionary than standard blood glucose monitors and test strips that are covered my Medicare”.

Furthermore, this gentleman’s hearing was on October 29, 2013 and the Judge rendered his decision on November 6, 2013, just a week after the hearing…not eight months after the hearing.

Two Judges hearing very similar cases and two different opinions. I guess we got the wrong Judge.

Unfavorable_3We are going to soldier on and are now preparing for Level 4.  We will draft an argument explaining why we disagree with the Judge’s decision and present it to the Medicare Appeals Council (MAC). I don’t know what to expect from this. In my perfect world, they would overturn the Judge’s decision. But I am not so sure there will be a perfect world for this. Still I have hope—-or at least try to have hope.

I hope that you have read my blogpost “Join the Crusade”. If you haven’t already done so, please follow the links in the blog and write your Congressperson to let them know how important a CGM is to the health and safety of any diabetic with hypoglycemia unawareness. We need to show our support for H.R. 3710, the Medicare CGM Coverage Act that was introduced into Congress by Congresswoman Carol-Shea Porter. Also, you can go to https://www.popvox.com/bills/us/113/hr3710 to quickly vote to support this bill. It only takes a few minutes and if you fill in the general information, your Congressperson will be notified of your support.

As I have said repeatedly, this issue is not only important to those on Medicare now, but also to the vast number of people who will be entering Medicare in the future. Believe me, you don’t want to have to go through the frustrations that we have experienced fighting for Medicare coverage of the CGM. It’s 100% exhausting, time consuming and frustrating.

UNFAVORABLE….a word that I really didn’t expect to see.

Good Grief! Another Device to Wear at Night?!

Sue May 2013_Head SquareOn December 30 I saw my PCP for my checkup visit. He went over the results of my blood work which were excellent. He asked me how I was feeling overall and I replied that I wake up every night around 2 am, but otherwise I’m fine. He then asked me if I wanted a sleep study done. He followed that question by saying I would lose weight using a CPAP (Continuous Positive Airway Pressure) mask. I said sign me up!

On January 6, I went to the Sleep Disorders Center for a consultation with Carla, the nurse practitioner. She had me fill out their questionnaire to get a general idea of my symptoms and asked me questions about my sleep patterns. She explained that Obstructive Sleep Apnea (OSA) is a fairly common problem in which air cannot flow normally into the lungs during sleep. It is usually caused by the collapse of the soft tissues in the back of the throat and tongue. Carla said that when you stop breathing, your brain wakes you and you gasp for air, fall back asleep, and the cycle continues. I learned that when this happens you don’t get the restorative sleep your body requires, and that OSA increases your risk for many health problems including high blood pressure, heart disease, stroke, brain damage, depression, type 2 diabetes, obesity and mortality. She then explained what a sleep study involved and scheduled me to return on January 8 at 8 pm for the study.

On January 8 I returned to the Sleep Disorders Center where I met Lisa, my sleep technician. She escorted me to my room which looked like a nice hotel room with an attached bathroom. She explained that during the study my breathing, heart rate, sleep state, and oxygen levels will be monitored. She told me to change into my sleepwear, and at 10 pm she returned and led me to another room where she placed electrodes attached to long wires on my head and two bands on my stomach to monitor my breathing. The study began at 11 pm when Lisa plugged the wires into the wall and I went to bed. She retreated to another room where she monitored my sleep throughout the night. I lay awake tossing and turning for several hours and finally fell asleep. I awoke at 6 am when the study was completed. I felt like a failure, but Lisa assured me that I had slept enough for a successful sleep study.

I returned to see Carla on January 27 to get the results of the study. I was informed that I have moderate Obstructive Sleep Apnea. During the study I slept a total of 268 minutes; during that time my airway was partially or completely blocked off 127 times. I also learned that during one REM (rapid eye movement) episode I stopped breathing 90 times in one hour. That alarmed me.

On January 29 I was back at the Sleep Disorders Center, this time to sleep with a CPAP mask that covered my nose. I was once again fitted with electrodes and stomach bands to monitor my sleep. Lisa retreated to her office to monitor me and make gradual adjustments during the night to the H2O pressure in the machine. This time I fell right asleep, waking only once during the night.

Data collected during every study is reviewed and evaluated by a board-certified Sleep Medicine Specialist MD, who then prescribes a CPAP if determined appropriate. Carla told me during the follow-up visit that their doctor, whom I never did meet, had prescribed CPAP therapy for me.

On February 11 I met with Amy, a registered respiratory therapist. We first discussed the nose-only mask that I had used during the study and how I didn’t like the rush of air I got when I opened my mouth. Based on that feedback, Amy set me up with a full-face mask, tubing to deliver the air, and a CPAP machine with an attached humidifier. She explained that my insurance would cover 80% of the cost and I would be allowed to pay the other 20% over a period of 10 months. My insurance requires that I become compliant with my physician’s orders by using my device a minimum of 4 hours a night, 22 out of 30 days. The machine has a memory card and a transmitter that sends the information collected to the home care agency that Amy works for. The first night that I Robot Girl2wore the CPAP was a little awkward, but I gradually got used to it and now I sleep all night with the mask on. Carla had previously told me that people who do well with the mask are determined to make it work because they feel so much better using it.

So now at night I wear my insulin pump, my continuous glucose monitor (CGM), a dental mouth guard to prevent teeth grinding, and the newest device, a CPAP mask. I still wake up when my CGM beeps to alert me of high or low blood sugar, but I return to sleep faster and sleep better. I feel rested, refreshed and more alert in the morning, and my eyes no longer have dark bags under them. And yes, I am losing weight with additional help from My Fitness Pal, a great free app that keeps track of my calories and exercise.

If you are interested in learning more about sleep studies and the decision to use or not use a CPAP machine, please check out Rhonda’s post dated 1/16/14 and another one dated 3/4/14 at her blog Fifteen Wait Fifteen.

Dear Representative Collins

Sue May 2013_Head SquareOn January 16th at 6:01am I sent the following private message on my Congressman’s Facebook page:

Rep. Collins, I am a type 1 diabetic approaching Medicare age and I use a continuous glucose monitor (CGM) to track my blood sugars and keep myself safe from falling blood sugars. My health insurance pays for this device, but under Medicare law it is not covered. I ask you to support H.R.3710, the Medicare CGM Coverage Act of 2014. This bill would allow Medicare to cover Continuous Glucose Monitoring Systems (CGMs) if recommended by a doctor. Thank you for your anticipated support of this bill.

I never got a response. Maybe that wasn’t the correct way to go about contacting him; I’m not sure. Perhaps I should have sent a letter in the mail or contacted him through his website.

In the meantime on February 17, Sue from Pennsylvania published her Join the Crusade post which encouraged people with diabetes or affected by diabetes to become involved in the fight for Medicare coverage of CGMS.  Her post gave instructions on how to email the Legislative Assistant for Health Issues of one’s Congressperson and ask for his/her help in conveying to the Representative the importance of supporting H.R. 3710: Medicare CGM Coverage Act.  A sample letter was provided.

Sue, with help from Laddie and me, followed her blogpost with an intensive push to contact other bloggers and ask them to share her story and the importance of H.R. 3710.  She received responses from several bloggers who either wrote blogposts about the issue or invited Sue to guest post on their site.  A big thank you to Kerri, Kim, Stephen, Diabetic Mainer, and all others who did this!  And many thanks to everyone who spread the message through Facebook, Twitter, and other social media.

Last week I sent my email to Rep. Collins’ Legislative Assistant for Health Issues using the form letter included in Sue’s blog and added the following paragraph to emphasize why this is so important to me:

I have been a type 1 diabetic since 1988, dependent on taking insulin in multiple doses every single day to stay alive. Although insulin is a natural hormone, type 1 diabetics no longer make insulin due to an immune system that goes haywire and attacks the insulin producing cells in the pancreas. Many things can go wrong when taking insulin, resulting in low blood sugars (hypoglycemia) and high blood sugars (hyperglycemia). These can happen very rapidly and without warning, resulting in confusion, coma and even death. The continuous glucose monitor (CGM) is a device the diabetic can wear to alert him or her to an impending low blood sugar in time to act before unconsciousness results. I have been wearing a CGM for 4 years, and have not had a low blood sugar that resulted in unconsciousness in that time. Before I got the CGM, I would have at least one episode every month, many resulting in 911 calls and/or emergency room trips. I will be 65 next year and on Medicare, and unless this law is changed I fear I will once again be experiencing low blood sugars and trips to the E.R. or worse.

Capitol Building_Collins3I am hopeful that I will get a response from either Rep. Collins or his assistant. And if I don’t get a response, I hope that he is so busy working on co-sponsoring the bill that he doesn’t have time to reply to me. I will happily accept that outcome.