Whole30 or Almost?

I am a firm believer that food choices make a huge difference in making diabetes easier to manage. I personally cannot eat lots of carb-yummy foods along with bucketfuls of insulin and expect anything other than roller coaster blood sugars. I am not good at moderation and usually do better with none rather than one. I can’t stop at a single potato chip or one chocolate chip cookie. In general I eat a diet that would be categorized as moderately-low carb. I do okay most of the time and then drift into patterns where I’m eating foods that trash my blood sugars. Most of my over-snacking with big boluses is in the evenings and I end up with lows at bedtime followed by 2:00AM spikes. Multiple Dexcom alarms destroy my sleep and blood sugars rebel well into the next day. Before- and after-dinner glasses of wine magnify the blood sugar swings and sabotage any semblance of willpower.

Occasionally I need a total reset to break the pattern. For the most part I don’t do diets with names and I have never followed the South Beach Diet or gone Paleo, Keto, Bernstein or Mediterranean. Last spring I decided to investigate the Whole30. The only reason I knew about the plan was that Kelley of Below Seven had blogged about her successful Whole30 experience in February and March of 2017.

The Whole30 describes itself as “a short-term nutrition reset, designed to help you put an end to unhealthy cravings and habits, restore a healthy metabolism, heal your digestive tract, and balance your immune system.” I bought the book in May and dove in headfirst. In general I hate to cook but tried a bunch of the recipes in the book. My husband was patient with the whole experience and we quickly agreed that we mostly like meat, fish, vegetables, and fruit with few spices or add-ons. The Whole30 is a do-or-die plan where sugar, grains, dairy, and all sorts of food are forbidden. Interestingly potatoes are allowed and after rarely eating them for several years, they were a treat. I was quickly amazed at how much fruit I could eat with minimal blood sugar disruption. Absolutely forbidden were diet soda and alcohol. I technically flunked the plan on Day 10 when I put lemon pepper on my chicken without knowing that it contained sugar. Unwilling to go back to Day 1 as the plan requires, I continued towards Day 30 as an imposter with lemon pepper on my conscience.

All of a sudden on Day 25 I didn’t care anymore. My first sin was Diet Coke and a wonderful carbonation buzz. The second was a glass of red wine. Surprisingly the food restrictions of the plan didn’t bother me much. I had few sugar cravings and my most-missed foods were string cheese and peanuts. I felt little guilt about quitting so close to the finish line because I lacked the conviction that Day 30 was going to change my life.

Fast forward to October. After a mostly-okay summer, I was again mired in bad habits. Too much diet soda, too much alcohol, too many snacks. I hit bottom two weeks ago when my husband was out of town and I determined that three old-fashioned donuts (two chocolate-covered and one sour cream) would be an acceptable dinner. You can imagine how well that carbohydrate binge went. Despite massive doses of insulin, my blood sugar soared and crashed all night long.

I started the Whole30 again the next morning. The first day was rough as my blood sugars relived the last 24 hours. Since then it has been smooth sailing. The food part of this diet continues to be easy for me since I really like vegetables, fruit, nuts, meat, and eggs and it is not intended to be a forever-diet. I have made my two favorite recipes from the Whole30

Spinach Frittata Whole30

cookbook—Spinach Frittata and Classic Chili—more than once along with basic dinners of meat, vegetables, and potatoes. Mixed nuts and honeycrisp apples have worked great for snacks and bananas, grapes, and juice have combatted the occasional lows. I am not missing Diet Coke which is kind of a miracle.

Am I cheating? Yes, but within the ground rules that I established at the beginning of the diet. I use glucose tabs for lows when away from home and obviously they are a big no-no. But they are convenient and “medicinal.” I am also allowing things like lemon pepper and soy sauce which are forbidden. Other than that, I am toeing the line.

Will I make it 30 days? Probably not and that is not my immediate goal. I have an endocrinologist appointment tomorrow and that was my original target end date. Unfortunately the donut bender will show up as Day 1 of my 14-day CGM tracings. Other than that, my BG numbers have been good. If I don’t indulge in a post-endo Diet Coke reward, I might keep going for another week or two. Maybe all the way to Day 30….

Is there anything magical about the Whole30? Probably not. It is one of many diets with a rigid no-cheat framework that can help people break bad habits in the short run while providing motivation for the future. It is probably an oversell that it claims to change your life in 30 days. At the same time both of my “almost Whole30” experiences have been successful in steering me back to healthy eating and better diabetes numbers.

If you have interest in trying the Whole30 plan, you can explore the website and probably learn everything you need to know. I bought the book at Amazon and haven’t regretted having it for reference and recipes. You should read Kelley’s series of blogposts at Below Seven because she details what she cooked, how she felt, and how it affected her diabetes. And unlike me she made it 30 days without breaking the rules!

A final question which I don’t address today is: If following a plan like the Whole30 makes diabetes easier and allows me to almost flatline my blood sugars, why don’t I eat like this most of the time? Good question.

Talking Types with Lloyd Mann

I first met Lloyd Mann four or five years ago at a Saturday diabetes meet-up at a local Panera Bread. He was sitting at the end of the table with a big smile, an iPad, and a copy of his book about diabetes. He was discussing the possibility of being tested for MODY because of insulin signaling problems. A resident of South Dakota at that point, Lloyd was in Minnesota visiting family and had previously hooked up with this group through online friend Scott Johnson.

Fast forward a couple of years and Lloyd now lives in the town next to me. We have begun to supplement the every-couple-of-months group meetings with one-on-one lunches at the Panera Bread near his home. Yes, our relationship is built on Lloyd’s love of tomato soup and “Scott Johnson-esque” grilled cheese sandwiches along with endless cups of Diet Pepsi (definitely not Scott-inspired but Panera doesn’t carry Diet Coke).

Lloyd and I are close in age. In diabetes we are simultaneously far apart and eerily close. Lloyd has Type 2 diabetes and I have Type 1 diabetes. In most ways we are stereotypical depictions of our diabetes types. I was diagnosed with diabetes as a young adult in the mid-1970’s. I was hospitalized in an unquenchable-thirst skeletal state with high blood sugars and large ketones and have never had a day since then without injected insulin. Lloyd was diagnosed with Type 2 diabetes in 1994, took pills for many years, and then started insulin 11 years later. Lloyd’s insulin resistance is off the charts and on a daily basis he uses over 10 times as much insulin as I do. His story personifies the fact that Type 2 diabetes is a progressive disease.

So here you have two Medicare people with diabetes. Lloyd uses a Medtronic 723 pump and changes his 300-unit reservoir every day. When his warranty expires in January, he plans to move to a Tandem t:slim X2 pump and continue to change his cartridge every day. He likes the t:slim platform because unlike his Medtronic pump, it allows him to program a bolus larger than 25 units. I use a Tandem t:slim X2 pump. I change my cartridge once a week and rarely bolus more than 2 units at a time. Because Medicare CGM coverage does not exclude people with Type 2, Lloyd is in the process of obtaining a Dexcom G5 CGM. I use a Dexcom G5 CGM. Currently neither of us is using sensors provided by Medicare and we both wear an Apple Watch and carry iPhones. Lloyd and I are technology twins.

Lloyd and I are students of diabetes. Yeah, we are “Know-It-Alls.” You may like us. You may find us annoying. But we don’t care. We know our stuff and we want to learn more.

I recently asked Lloyd if I could interview him and we met at Panera two weeks ago. I did not record our talk so Lloyd’s answers are in my words with scattered quotations. I also throw in an occasional comment.

Lloyd, I know that your diagnosis story is in your book but please give me a short timeline. I was diagnosed with thyroid disease in 1980. Fourteen years later at age 44 I was diagnosed with Type 2 diabetes. What was your reaction was to the diagnosis?  I just thought “Oh no, one more pill to take!” Do you have a family history of Type 2 diabetes?  Both of my sisters have Type 2 but neither of my parents did.

How long have you had diabetes?  23 years.

How long have you been on insulin?  12 years since 2005.

How long have you been on a pump?  Since 2005. Less than one year after starting insulin, I convinced my doctor to order me a pump. I had used Lantus followed by a mixed insulin and wasn’t having good results. I did my homework and presented my doctor with a list detailing why the Deltec Cozmo was the best fit for me. Rather than specify Type 1 or Type 2 in the letter of medical necessity, he just put “Insulin Dependent” and I was immediately approved for pump therapy.

You indicated that you will be purchasing a new insulin pump in January. What features are important to you as you make that decision?  I need a pump with multiple basal rates. I currently use 8 different rates and my highest hourly rate at 3:00AM is 5 times as high as my lowest rate. Because of high insulin requirements, I require a 300-unit or larger reservoir and the option of taking boluses bigger than 25 units. I also need to be able to set an insulin sensitivity factor of less than 1 unit per 10 points. (As someone with Type 1 who is very sensitive to insulin, I want to put multiple exclamation marks after each of those numbers!)

I am planning to order a Tandem t:slim X2 to replace my current Medtronic pump. Although the  t:flex has a larger reservoir, I prefer the upgrade features, Bluetooth, and CGM capabilities of the X2. I am used to changing my reservoir every day and will continue with that practice. I expect that my total daily dose of insulin will go down using the X2.

Tell me about your decision to order a Dexcom G5 CGM. How do you think it will help you? I plan to use the G5 to help reset basal rates. Although I use more insulin now, the basal patterns are the same as I figured out using the Abbott Navigator over 6 years ago. I rarely get lows (insert another exclamation mark here!) but need a CGM for highs. I have always been forgetful and that is increasing with age. My  insulin mistakes are almost all related to forgetting to bolus and the CGM will alarm when I forget and my BG soars. I’ve been working with Dexcom since earlier in the summer and I am “waiting as fast as I can” for the arrival of my G5.

So Lloyd, what do you think of the Medicare ban on smartphone use with our G5’s?  “You can’t print that.”

What year was your book published and why did you write it?  Successful Diabetes Management was published in 2011 and I wrote it because I was doing well managing my diabetes and wanted to help others. I chose the cover from Amazon’s stock photos and the image spoke to me as “Follow the Path” to good diabetes management.

I had also been one of the many people at Diabetes Daily who knew Richard Vaughn and goaded him to write his book published in 2010–Beating the Odds, 64 Years of Diabetes Health. After Richard’s book was published, he contacted me and said “Your turn, Lloyd”.

Lloyd continues his mission to help others with Type 2 diabetes and his Diabetes Daily forum sticky note titled Type 2 in a Nutshell has over 16,000 views. He was previously a moderator at Diabetes Daily.

As we consider Type 1 and Type 2, Lloyd, how do you think our diabetes lives are similar?  Our daily tasks are the same. We count carbs, we bolus, we deal with highs and lows, we test BG, we change pump sites. And most importantly, we live with fear of complications.

How are our diabetes lives different?  My lows are not nearly as debilitating as yours and my risk of DKA is about 1/20th of yours. I think that people with T1 can eat a bigger variety of foods than a T2 aiming for tight control because they process food more normally and insulin works better. (Like many people with Type 2, Lloyd’s weight issues are intensified by high insulin use.)

What is the hardest part of diabetes for you?  “It’s forever” and “knowing what to do and doing it are two different things.”

What are your thoughts on Type 1 versus Type 2 diabetes?  I think that the naming of Type 1 and Type 2 leaves a lot to be desired. Type 1 and Type 2 are based on how you got to where you are but they don’t always address where you are. Type 2’s need to restrict carbs more than Type 1’s and we also have a problem with our livers. Metformin addresses that and I am still taking it after 23 years of diabetes. I think that my diabetes is more predictable than yours.

As this stage of your diabetes career, do you identify more with people with Type 1 or those with Type 2?  My day-to-day life is like a Type 1. My medical team thinks that I have completely quit producing insulin and that is unusual for Type 2. I have more in common with T1’s than with T2’s on pills.

Conclusion:  I asked Lloyd if he had any questions for me and he wanted my opinions on hiking and exercising. We talked about lows and he indicated that he used to get lows on older Type 2 medications and when he used to walk a lot. But he has rarely gotten lows since moving to insulin 12 years ago. Sometimes I think that my Type 1 diabetes is most defined by 40 years of lows: while driving, while taking care of my children, while mowing the lawn, while wandering lost at the mall, while peering up at concerned policemen and paramedics. Even with improved CGM technology which now mostly protects me from severe lows, my treatment decisions are always influenced by the possibility of lows and I might argue that’s the biggest difference between Lloyd and me.

Do lows make me have the “bad” kind of diabetes compared to him? No, because lows mean that my insulin is working. I can’t imagine the frustration that Lloyd must feel when oral medications in addition to hundreds of units of insulin daily are required to tame his blood sugar. Metabolic syndrome and insulin resistance are powerful opponents and I kind of wonder if my life is easier.

When I look at the differences between the types of diabetes, I mostly end up in the “I don’t know” and “I don’t care” camp. I don’t want to fight about labels, blame, stigma, cost, and who’s got it worse. I just want and need the appropriate care for my diabetes and I think that Lloyd would say the same thing. Diagnose me correctly and treat me correctly. That’s not asking too much.

In summary, I would say that the most fitting end to this blogpost is that no matter how you look at it, Lloyd Mann and I are just friends who both happen to have diabetes. Types don’t matter.

Arthritis on a Diabetes Blog

When it comes to living with both Type 1 diabetes and arthritis, I don’t experience the amount of pain and disability that burdens some of my favorite people in the DOC. Rick Phillips who deals with rheumatoid arthritis and ankylosing spondylitis shared his story on my blog a couple of years ago. Rick tirelessly advocates for people with diabetes, but he often admits that arthritis negatively impacts his life much more than diabetes. Molly Schreiber has had Type 1 diabetes for 28 years. Her rheumatoid arthritis is a formidable opponent and she deals with the worst that RA can dish out. In general I am doing okay when it comes to living with arthritis. Except when I’m not….

*********

I am good at diabetes.

I am bad at arthritis.

I have had a tough summer. Although I was diagnosed diagnosed with inflammatory spondyloarthropathy over 10 years ago, my problems are peripheral. My hands hurt and my thumb joints are shot. In May I woke up with horrible heel and foot pain which continues to get worse despite following doctor’s orders.

I don’t write about arthritis very often because I am a diabetes blogger. Type 1 diabetes is a constant in my life and I do little without taking diabetes into account. After 40+ years of T1, I have no major D-complications. At the same time diabetes is a “needy condition” that requires constant affirmation and is entrenched in my psyche. More than once I have mentioned that I deal with other inflammatory and autoimmune conditions in addition to diabetes. I once wrote about a skin problem called annulare granuloma and mentioned that I felt helpless in dealing with it because “When you have Type 1 diabetes, you get used to the idea that WHAT I DO MAKES A DIFFERENCE in my health.” I’ve never bothered writing about hypothyroidism because it goes hand-in-hand with T1 diabetes. Mine was discovered through a routine blood test 21 years ago. I’ve never struggled with symptoms and my Synthroid-generic dose is the same as prescribed in 1996.

Arthritis. This is the thing that I’ve not written about and it is the health problem that most threatens my Pollyanna “Life is great!” philosophy.

I think that some of the personality traits that make me “good” at diabetes make me bad at arthritis. Diabetes loves people who overdo things and power through when you don’t feel great. Diabetes thrives on doing the same thing over and over again. Arthritis does not reward overuse of my body and I know that I would feel better if I didn’t sync as many steps on my Fitbit. (Actually I put my Fitbit in the drawer a few weeks ago because I need to rest.) I know that I would feel better if I gave up playing golf. I quit tennis a dozen years ago and still feel sad about that. I don’t know about hiking, but I suspect that I would do better with fewer mountains and more walks around the block.

It all comes down to pain.

Unfortunately sitting at home doing nothing is worse than pain and diabetes is a bear when your body is glued to a chair. I have always been active and I attribute my relatively good health to exercise. Blood sugars are better with movement and I believe that exercise helps ward off D-complications such as heart disease and neuropathy. Transitioning to a couch potato life because of sore feet and swollen fingers doesn’t seem like an optimal life strategy to me.

But exercise currently brings me pain.

I am strong but pain makes me sad.

My primary arthritis diagnosis is inflammatory spondyloarthropathy and it is a type of arthritis where many people feel better moving rather than resting. It is a type of arthritis that fits my “can’t stand to sit down” personality. But my hands and feet are diagnosed as osteoarthritis. I’m struggling with achilles tendonosis, heel pain, and elbow tendonitis. Overuse “old people” conditions.

Back to diabetes. What happens to my blood sugars when I am not active? Mostly they get worse. But I can take more insulin and then they are OK. But I gain weight and my insulin sensitivity goes to h*ll.

I am a self-manager of my diabetes and my endocrinologist is totally mostly on board with that. Diabetes usually does best when you manage it in the moment (AKA Sugar Surfing) and my Dexcom G5 protects me from most of the submarine lows that drive my endo crazy. My rheumatologist has never gone ballistic at my decision-making, but he occasionally looks askance when I arrive at an appointment and say that I reduced the dosage of one medication and refused to take another. At the same time he is older than I am and still plays tennis. He goads me to get back to the courts and suggests that I wear an arm strap to help with elbow tendonitis and use more of the topical Diclofenac gel to ease pain. More than any of my other doctors he understands how my medical issues are woven together in a spiderweb of autoimmune and inflammatory conditions.

I am an uber-educated diabetes patient. I understand my disease and voraciously read diabetes research articles, websites, blogs, and message boards. I am an active participant in the DOC and credit my fellow PWD’s for most of my knowledge and activism. I arrive at my endocrinology appointments with printouts of BG statistics and always have a list of pertinent questions.

I am less capable when it comes to my arthritis. To tell you the truth, I am not completely sure of my diagnosis. I do not have rheumatoid arthritis (RA) and once you don’t have that, it can be hard to find a niche for your condition. My medical records reflect terms such as inflammatory spodyloarthropathy, inflammatory polyarthritis, and osteoarthritis.

When I look at the future, I am much more afraid of physical limitations due to arthritis than I am of diabetes. I don’t worry about diabetes complications and have never experienced diabetes burnout for more than five minutes. But what will I do if walking is unbearably painful, elbow pain blocks me from playing golf and carrying my grandchildren, and hand pain rules out opening a jar?

I am good at diabetes.

Unfortunately arthritis scares the bejesus out of me.

Pain is a formidable opponent.

Pain.

* The image for the pain measurement scale was purchased from shutterstock.com.

Diabetes Pregnancy: Now and Then, Part Two

As I mentioned in yesterday’s post, I recently approached Kerri Sparling of Six Until Me about sharing my pregnancy and childbirth stories from the late 1970’s and early 1980’s. Those were the diabetes days of no home BG monitoring and one or two injections of insulin a day. Yesterday the first part of my story was highlighted at Six Until Me. Today is the second part of my tale. Check it out!

Diabetes Pregnancy: Now and Then, Part Two

 

Diabetes Pregnancy: Now and Then

A while back I approached Kerri Sparling of Six Until Me about sharing my pregnancy and childbirth stories from the late 1970’s and early 1980’s. Those were the diabetes days of no home BG monitoring and one or two injections of insulin a day. Today the first part of my story (with a few choice comments from Kerri) is highlighted at Six Until Me. Check it out!

Diabetes Pregnancy: Now and Then

Learning to Like Tidepool

In previous blogposts I have mentioned my frustration with finding a platform where I can download and view data from all of my diabetes devices. Diasend used to be my go-to site and would still work for me if I used my Dexcom G5 receiver. But I am a hipster-oldster who uses her iPhone and Apple Watch for CGM numbers. An email to Diasend followed by a phone call to Dexcom last week indicated that there are no plans to allow G5 Mobile integration into Diasend for US users. Dexcom Clarity is great for analyzing my CGM data but it doesn’t include pump or BG meter information. Tandem t:connect allows me to download my pump and Freestyle Lite meters but does not show CGM information. Maybe when the Dexcom G5 is integrated into the t:slim X2 later this year, the Tandem site will include all of my information. Although I love mySugr and the cute monsters, I don’t need a day-to-day logging app. Pretty quickly I get down to Tidepool as the only platform that is compatible with all of my devices.

My first experience with Tidepool was last fall when I participated in a research study through Glu. I downloaded my pump and meters weekly while my CGM synced to Tidepool through Apple Health. I was required to enter my food and carb counts through the Blip Notes app. The use of hashtags for notes initially bugged me but with practice it became quite easy. The Basics screen in the Blip dashboard was novel and my data was displayed in charts and domino dot patterns. I don’t recall spending much time reviewing the Daily View screen. In general I couldn’t envision how my endocrinologist would work with Tidepool because she requires printed reports. After the Glu study ended, I drifted away from Tidepool.

Fast forward 7-8 months and I am becoming a Tidepool fan. A couple of things happened to bring the website back to my attention. One, Chris Snider was hired as Community Manager and I assume that he is instrumental in the new informative emails showing up in my inbox. Two, it was announced that Tidepool users are now able to share their data with Type 1 diabetes researchers. You can learn more about the Tidepool Big Data Donation Project and how to participate at this link. Three, a recent email shared a clinician’s video featuring Diabetologist Dr. Anne Peters demonstrating how she uses and interprets Tidepool reports. I am always interested in what endocrinologists are seeing and thinking and her presentation helped me understand how I could gain insights into my diabetes using Tidepool.

I encourage you to take the opportunity to watch this video.

 

***** Interruption *****

Why do I download data?

I download data: 1) to take to every endocrinology appointment,  2) to review my numbers for a pat-on-the-head or a kick-in-the-butt, 3) to provide printed reports for Medicare which requires a 30-day log for pump supplies and a 60-day log for CGM supplies, 4) for various clinical studies and/or beta-testing apps, and 5) for curiosity to test new data platforms.

***** End of Interruption *****

Tidepool is a non-profit company and was founded in 2013 by Howard Look, a self-described nerd who has a daughter with Type 1 diabetes. Like many small diabetes tech companies it grew out of the #WeAreNotWaiting movement and is powered by geeks, D-parents, and PWD’s. As Look mentions at the end of the video, employees at Tidepool “have pancreas in the game.”

To get started with Tidepool, go to www.tidepool.org. Although you can check out the website in any browser, the Uploader is a Google App and you must use Chrome on either a Windows or Mac computer for downloading and viewing data. I have contacted Tidepool support several times by email and have always received prompt and courteous help.

Where do I go with Tidepool from here? I am pleased to be participating in the Big Data Donation Project and have recurring calendar reminders to download my pump and meters. My Dexcom G5 syncs to Tidepool continuously through Apple health. I also plan to periodically review my own D-numbers and graphs through the Blip dashboard. After 40+ years of Type 1, I am not good about day-to-day logging and probably won’t use the phone app very often, but you never know. I am currently a beta-tester for a new version of the app and maybe I’ll get hooked. Rather than reviewing my graphs and numbers on a computer, my endocrinologist uses print-outs that are eventually scanned into my medical record. In the Tidepool video above, Dr. Peters provides a glimpse of the future where diabetes data is viewed online and interactively with patients. It will be a long time before that future shows up at my doctor’s office.

In addition to exploring Tidepool.org and signing up for the Big Data Donation Project, you can learn more about the company through these links:

Diatribe (2014):  How the Tidepool Data Integration Platform Can Ease Diabetes Management: Our Interview with Tidepool CEO Howard Look

Six Until Me (2015):  #WeAreNotWaiting: The (Not So?) Brief Story of Tidepool

Diabetes Mine (2016):  Tidepool Goes Big After White House Visit

Diabetes Numbers Podcast Episode 23 (2017):  Tidepool’s Big Data Donation Project

In conclusion here are screenshots provided by Tidepool of the Blip Basics Home screen and a Daily data view. Note that the Daily view shows insulin, carbs, BG’s, and notes in the same timeline as CGM data.

Wildflowers, Wildlife, and Diabetes in the Wild

My spring has been filled with wildflowers on the hiking trail and wildlife in the neighborhood. I’ve seen hillsides of yellow poppies along with purple desert lupines, orange globe mallow, red Indian paintbrushes, and white soaptree yucca blooms. I’ve seen snakes, lizards, javelina, coyotes, and recently a bobcat while on an after-dinner bunny hunt** with my grandchildren. My spring has also had an interesting mix of “diabetes in the wild.”

**Whenever my grandchildren visit Arizona, we go out in the golf cart after dinner and look for bunnies. The children maintain a bunny book where nightly bunny totals are recorded. There is a column for “Ciyotes” which was edited this year to include bobcats. 

Neighbor

My first “diabetes in the wild” encounter happened when my next door neighbor came to talk to me about a tree issue affecting both of our yards. She and her husband are part-time Arizona visitors because he still works full time. We’ve always been friendly but have never talked about much except the weather and grandchildren. Sylvia indicated that Jim wasn’t there yet because he was traveling for work. I knew that he was affiliated with a major university in their home state but had never asked for more details. I asked Sylvia about Jim’s profession and she said that he was a teaching professor and practicing physician in the speciality of…. Wait for it! ….Endocrinology!

So for 8-9 years my Type 1 diabetes of 40 years and I have spent the winter months next door to a renowned specialist in diabetes. Similarly he has unknowingly lived next door to a not-so-renown diabetes blogger!

It rained the next couple of days and before I knew it, Jim and Sylvia had left and I didn’t see them again before I returned to Minnesota. Thus I never got to have a celebrity-crush visit with the neighborhood diabetes doctor. I Googled him and learned that he is quite renown on a national basis. I didn’t get a chance to give him one of my blog business cards and I have no idea whether he ever reads patient blogs. My own endocrinologist avoids diabetes social media and does not read the blogs of her patients. On one hand I think doctors benefit from hearing patient voices; on the other hand I know my endo works long hours with insufficient pay and I don’t expect diabetes to be her hobby. If Dr. Jim chooses to read any of my blog, he will learn that I am an educated and involved patient who does her homework and improvises with “her own thing.” It will be up to interpretation whether he sees me as an empowered consumer or a nightmare patient….

Gym Meet-Up #1

I went to my Arizona community gym a few days before returning to Minnesota. A man about my age was the only other person there. We said “Hi” and continued with our workouts. After about 15 minutes, he introduced himself as “Tony” and asked about the Dexcom transmitter on my arm: “Hey, is that thing on your arm for diabetes?” I said yes and indicated that it was a continuous glucose monitor and described what it did. He told me that a year ago he had started working out and changing his diet to try to avoid diabetes which runs rampant in his family. He had lost 43 pounds, gained muscle, and felt energized by his new level of fitness. His doctor was thrilled with the effect on his lab work. I don’t think that Tony had been diagnosed with pre-diabetes but hopefully his hard work will prevent or at least delay diabetes coming into his life.

Gym Meet-Up #2

While Tony and I were speaking, an elderly man (I’m old, but he is older!) came into the gym and started his workout. After Tony returned to his weights, this gentleman came over and pointed to my JDRF tee shirt and said that his wife had been very involved with them. (Thanks to Sara of “Moments of Wonderful” for the shirt.)

A bit teary-eyed he told me that she had died six months ago after 60 years of marriage. He was an engineer by trade and had always helped her take care of her diabetes. She wasn’t good with numbers he explained. She used a pump and CGM which I assume were Medtronic because he said that her “thing” didn’t look like mine. It turns out that Morrie lives next door to one of my friends so I plan on looking him up next year when I’m back in Arizona. I would enjoy hearing more of his story as a caregiver and more about his wife’s journey with diabetes. Morrie indicated that he hadn’t been getting out much since his wife died and how much he enjoyed talking with me. The enjoyment was mutual, but tinged with sadness.

Poppies, bobcats, and diabetes. Wild things.

Fighting the Diabetes Chocolate Demons

This post is dedicated to my friend Carol. I met Carol through my blog and we periodically email each other talking about Type 1 diabetes, Medicare, and stuff like that. She doesn’t live near me and I don’t know if we will ever meet in person. But we share the journey, the joy, and the struggle of women aging with Type 1 diabetes. Thank-you for being part of my life, Carol.

Dear Carol-

The anguish you described in your latest email about chocolate, post-dinner eating, and making “bad” decisions probably rings true for almost everyone with diabetes. In fact it might ring true for every human being who has access to potato chips, chocolate, cigarettes, and/or alcohol. Unfortunately for those of us with diabetes, we have BG meters that provide a visual reminder of how often we have failed to live up to our expectations.

I am good at finding temporary solutions to the problem of evening snacking. I long ago gave up hope of ever totally eliminating it. Sometimes I play games that work for a while. For example I package something like Hershey’s Kisses in plastic bags of 15g carbs. I put them in the freezer and allow myself 1 bag each evening. That works for a few weeks before I realize that nothing is stopping me from grabbing a second or third bag of chocolate. Then I play around with my digital calendar and add a daily resolution event of “No cr*p eating after dinner.” When I am successful, I change the color of the event from a boring gray to a pretty color. It’s stupid, but once again it works for a couple of weeks. Sometimes I put a big “No!” sign on the refrigerator or snack cupboard, but this only works for a day to two. I have a couple more games that frankly are reminiscent of Stupid Pet Tricks…. Another thing I do is have a cup of caffeine-free tea after dinner. That burns up some of the time when I might have the urge to start snacking. Going for a walk after dinner helps but I am usually so active during the day that I don’t want or need more Fitbit steps. Some people learn to knit or crochet and others play computer solitaire to avoid snacking.

I understand some of my triggers for chocolate orgies. Snacking in the late afternoon sometimes leads to skipping dinner and that’s a recipe for disaster. Too much wine before and during dinner definitely ruins my willpower and I don’t keep it in the house anymore. I think my biggest frustration is that I can convince myself that the “correct” insulin bolus will take care of the snack food and I’ll just have a couple of cookies. But it doesn’t work. Never, never, never. It doesn’t work.

Recently I’ve had a string of successful evenings with a Nature Valley Protein Bar (Peanut Butter Dark Chocolate—14g carbs) along with a mug of warm FairLife milk (6g carbs). You can buy the bars in boxes of 5 at the grocery store or in the big boxes of 30 at Costco. I’ve been known to eat two bars, but usually one is enough and the addition of the warm milk extends the enjoyment time of the snack. A friend recently told me about FairLife milk which is ultra-filtered and has half the carbs and sugar of regular milk. I like it much better than almond milk and the impact on BG is minimal.

I know that periodically I am going to relapse from whatever temporary solution I have found and I try to forgive myself for those times. At the same time my slip-ups drive me crazy because my overnights are so much better when I don’t lose the evening munchie battle. My Dexcom CGM doesn’t alarm to lows in the early night hours followed by 2:00AM highs as the junk food digests. My fasting BG in the morning doesn’t randomly pingpong between low and high. A  reasonably-sized evening snack leads to a higher percentage of “good” overnight BG numbers with only minor low and high excursions. My fasting numbers tend to be more stable. I sleep better. I feel better.

Why can’t I do what I know is good for me and what makes me feel better???!!! That’s the million dollar question.

Carol, you described the anguish over our lack of perfection so well. After recently pouring your heart out to your endocrinologist for help, you wrote:

From eating the stupid chocolate I had to have. It is totally the opposite of who I am all day – so disciplined. I’ve asked the Endo for help with the chocolate — counseling for why I need comfort food when I know it’s bad for me? I asked her why I would be 90 after dinner and yet have to have chocolate that I know will spike me to 190?

You call it “Diabetes Distress” and that’s as good a name as any. I have no great advice for you, but I have a lot of understanding. I hope that the next time you beat yourself up over chocolate that you remember that you are not alone. There is no one with diabetes who has ever done it “right” all of the time. Food is a complicated issue as we have to eat to live. Food is our medicine for fighting lows and balancing blood sugars. Foods like chocolate are enjoyable and taste good. Food, especially food with sugar, is addictive. For me there is no doubt than none is easier than one. One cookie and one piece of chocolate don’t live in my world and moderation is often an elusive goal.

Diabetes can easily become a disease of disordered eating, but I think that our distress is not just the chocolate. It’s the relentless pressure of diabetes which is easier to picture as a pile of candy bars than the inner demon of inadequacy as we try to mimic a healthy pancreas.

Carol, it is easy for me to pat you on the head and say what a good job you are doing with your diabetes. Because you are. But it’s harder than that and we can’t pretend that it isn’t. I hope that you may find some answers through counseling. Meanwhile don’t forget to be kind to yourself and remember that you are not alone in your struggles or your successes. If you learn some inner mantras or even Stupid Pet Tricks to tackle the problem, please share. Until then, keep up the good fight.

Laddie

Countdown to Medicare with Type 1 Diabetes:  1 Month / Growing Old with T1D

Laddie_Head SquareI don’t have much to write about this month when it comes to Medicare. I am signed up for Medicare Part A and Part B. I have enrolled in a Supplemental Plan offered by BCBS of MN. I have selected an AARP Walgreen’s Part D drug plan. For better or worse I am ready to tackle Medicare on April 1.

Turning 65 years old and going on Medicare is a milestone in the progression of growing old. It is impossible for me to make this transition without thinking about growing old with Type 1 diabetes. Below you’ll find some of my thoughts.

The idea of “phases of aging” makes sense to me and I am moving into the “young-old” subgroup described in a Lumen Learning sociology course:

The United States’ older adult population can be divided into three life-stage subgroups: the young-old (approximately 65–74), the middle-old (ages 75–84), and the old-old (over age 85). Today’s young-old age group is generally happier, healthier, and financially better off than the young-old of previous generations.

As a young-old person who has lived with Type 1 diabetes for over 40 years, I am the most confident and empowered in relation to my diabetes than I have ever been. That is not going to change on April 1.

When I was diagnosed in 1976, I knew nothing about diabetes and had access to only a few books and magazines. Today the Internet has opened doors to scientific knowledge, professional recommendations, advocacy issues, and the cumulative knowledge of thecountdown-to-medicare-1-month Diabetes Online Community (DOC). Although I don’t blindly follow online diabetes advice and have never consumed okra water, I strongly believe that my fellow people with diabetes (PWD) have taught me almost everything I know about Type 1 and have motivated and empowered me to succeed. Continued learning about diabetes won’t go away just because I get a Medicare card.

I have lived a privileged diabetes life and have never worried about access to care. I understand that I will have a huge learning curve when it comes to getting supplies and medications under Medicare. I am not yet losing sleep over potential roadblocks although I know that it is naive to think that there won’t be any.

There is no doubt that improvements in both insulin formulations and technology have allowed me to reach age 65 in reasonably good health. I can’t envision what my health status would be (or if I would even still be alive) had I continued on my 1976 insulin regimen of one injection a day and no home BG monitoring. Insulin pumps and CGMs have exponentially increased the quality of my life. I can’t even begin to hypothesize on how and if Medicare will cover future diabetes tech such as artificial pancreas systems.

In some ways I am living with a different diabetes than at other stages of my life. Although hormones never completely disappear, they don’t rage as much for me anymore and are usually more predictable than when I was younger. In Figure 5-2 of Think Like a Pancreas, Gary Scheiner shows graphs of “typical basal insulin levels by age group.”

fullsizeoutput_19f0

The thick line is for ages 60 and older and shows a decrease in total basal insulin along with a sharper rise in insulin needs in the early morning hours. I am experiencing both of those changes and they didn’t make sense to me until I saw Gary’s chart. Most of my bolus ratios have remained the same so far.

Hypoglycemia unawareness is a mixed gift bag as I move into my senior years. On one hand, I feel better because I don’t get the sweats, shakiness, blurry vision, and insatiable hunger of my younger years. I also don’t tend to over-treat lows and multiple bowls of Frosted Flakes at 3:00am are a distant memory. At the same time I know that hypoglycemia is a huge problem for seniors with diabetes and my risks for falls, hospitalization, and permanent disability resulting from severe lows will increase. Knowing that Medicare will soon be covering CGMs for seniors is a huge relief, but I won’t consider it a done deal until I am approved under the not-yet-established CMS guidelines.

When I look at my diabetes, I am comfortable believing that I will be in control of my diabetes throughout my “young-old” years and hopefully well into my “middle-old” years. It is likely that I may require help with care at some point in my “old-old” years…. That terrifies me because I don’t trust anyone else to take care of my diabetes and my biggest fear of aging is losing independence.

Aging is a process. My life isn’t going to be much different on April 1 than it was on March 31. I’ll still have type 1 diabetes and will continue to test my blood and take insulin. I’ll still have arthritis and sometimes I worry more about that than diabetes. But one change that will happen is that I will finally start using the red, white, and blue Medicare card stashed in my wallet. Wish me luck.

Countdown to Medicare with Type 1 Diabetes: 2 Months / A Decision

Laddie_Head SquareI’ve made a decision, but will it matter in the long run?

A month ago I planned to sign up for a Platinum Blue Cost plan offered by Blue Cross Blue Shield of Minnesota. It seemed to promise a relatively easy transition into Medicare with the option of switching to the Senior Gold Supplemental plan within 12 months with no health questions. I believe that longterm Senior Gold is a safer plan for me because it covers all Medicare providers, guarantees no reduction in benefits, and provides better coverage when I am out of state. Unfortunately it is more expensive, mandates the use of Competitive Bidding suppliers, and requires the purchase of a separate drug plan. It should be okay for me to start on Platinum Blue and then switch to Senior Gold for 2018, but the BCBS rep has not been able to give me a link within the policy guaranteeing the ability to switch. I don’t trust anyone in today’s healthcare environment and I’ve decided to dive headfirst into Senior Gold and traditional Medicare.

Like most people living with a chronic medical condition, I am stressed to the max considering the present and future of healthcare in the United States. I am working to stay informed and involved in advocacy while protecting myself from going batshit crazy. I am rationing Facebook time, newspaper reading, and TV news. I am not worried that I willcountdown-to-medicare-2-months ever be in the position of having no access to some level of diabetes care. It may not be a state-of-the-art insulin pump and CGM, but I have to believe that I will always have access to insulin. I worry for other seniors who do not have the resources than I have. I worry for younger people as the protections of the Affordable Care Act (ACA) are repealed without a plan for the future. I worry that some of our elected representatives are more interested in reducing healthcare costs by limiting access to care rather than reining in costs, particularly drug costs.

The future of Medicare is a big unknown and I have read articles that suggest that the repeal of the ACA and changes to Medicaid will precede any major changes to Medicare. At the same time Tom Price, Trump’s cabinet nominee for the Department of Health and Human Services, is in favor of privatizing Medicare and House Speaker Paul Ryan has pledged to reform Medicare in 2017. A recent article in Forbes suggested that Trump might surprise everyone and come out in support of MFA (Medicare for All). So who knows? All I know is that we are in for a wild ride and probably not a ride that will be fun for people with pre-existing health conditions. I will enter Medicare trying to make the best choices I can while knowing that my choices might not matter at all as we move into a crapshoot future.

I haven’t selected a Part D drug plan yet. I currently take three drugs, four if you include insulin. Two have good coverage with any plan. The third is well-covered as a Tier 2 generic drug in the BCBS Platinum Blue formulary. Unfortunately this same drug is non-formulary and/or covered poorly in Part D plans. It’s been a good drug for me but not so great that I won’t be willing to switch to something more affordable.

I have received notification from SSA that I have been accepted into Parts A and B of Medicare. I have not yet received my Medicare card and that is required before I can apply for a supplemental or drug plan.

I am not dreading Medicare as much as when I started this series almost a year ago. I know some people with Type 1 diabetes who are thriving on Medicare and have learned to navigate the system to get the care and supplies they need. I know others who live on a 90-day cycle of frustration and fear as they repeatedly run into roadblocks getting test strips, insulin, and pump supplies. I know that I will go crazy when things don’t happen the way I expect and I will scream at automated phone menus. But I choose to be optimistic that I will get everything figured out. That might be blind, stupid optimism and I reserve the right to change my tune at any point in the future and start cursing and howling at the moon.