Pin the Tail on the Donkey: Buying a New Pump

Posted on June 17, 2013 by Laddie

This post is my June entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/june-dsma-blog-carnival-3/ The topic is: How do you select the diabetes devices you use? To others looking into new or replacement devices, what would be your best advice to someone shopping around?

When I select medical devices, I put on a blindfold, turn around 3 times, and pin the tail on the donkey. Oops, wrong game. But that is what it felt like when I bought my last pump in December 2012.

When I began my pump search, I was using an out-of-warranty Medtronic Revel pump and a Dexcom CGM (continuous glucose monitor). I had previously used the Medtronic CGM and found it to be painful and inaccurate. But I loved having a sensor augmented pump and only having to carry one device. So a pump/CGM combo was my #1 criteria for my next pump. Unfortunately there was no device on the market that had the features I desired given that I was unwilling to use the Medtronic CGM.

Medical device companies are prohibited from giving detailed information about pumps in development and they have no control over how long FDA approval will take. So ultimately I had to make my purchase decision based on my best guess of which future pump would have the features I wanted along with a guess of how soon it would get to market. So I put on my blindfold and went to work.

I was very happy with my Medtronic pump and I knew that their improved Enlite sensor system would “soon” be available in the USA. Animas was on track to release a pump that would be combined with the newest Dexcom G4 Platinum CGM. The new kid on the block, the Tandem t:slim, was a touchscreen rechargeable pump that would also eventually link up with Dexcom. I didn’t have any reason to consider the Accu-Chek pump, so I ignored it in my decision. I don’t mind tubes and was not interested in the Omnipod.

Normally I would love to make a chart and compare features pump by pump. But I didn’t have sufficient information to do that with my most important decision points. I had no way to evaluate the Medtronic Enlite sensor system, and I wasn’t willing to leave Dexcom to take a chance on it. I found the Tandem pump intriguing, but they had no upgrade program in place and I wasn’t willing to risk not having an affordable pathway to buy their future sensor integrated pump. I chose Animas because it will be the first pump released with an integrated Dexcom CGM and I am guaranteed a $99 upgrade fee to get that pump.

Am I happy with my Animas Ping pump? Not really. I knew that I would hate the menu system, but I actually underestimated how much I dislike it. But it’s a good pump and it does the job of delivering my insulin safely. Do I regret my decision? No, because I made the decision based on the future which has not arrived yet. I am still waiting for the Animas Vibe to come to market and I think that it will fix the things I don’t like about the Ping. It will definitely give me the pump/Dexcom combo that was and is my #1 requirement.

My advice to others who are shopping for their first pump or a new pump?

Do your homework:

With yourself. Decide which features are most important to you. Do you want tubeless? Do you require a large reservoir? Do you want a Pump/CGM combo? In most cases you won’t get everything on your wish list, so be open to considering several brands of pumps.
With the pump companies. Visit their websites and request their brochures. If a local rep is available, meet with him/her to see the pump and learn more about it. Omnipod even has a non-operational sample pod that allows you to try it out on your body.
With your medical team. If this is your first pump, your medical team may require classes about pumping and carb counting before prescribing a pump. I think it’s valuable to ask for your team’s opinions on pumps, although ultimately you should get what you want not what your doctor likes. Your doctor’s office might also have demo pumps and infusion set samples.
With your insurance company. Many insurance companies will cover all pump brands. But if they don’t, it’s good to know that up front. For example, Medicare will not pay for the Omnipod at this time. Also, it’s a good idea to determine your financial responsibility for the pump purchase and the ongoing supply expense.
With other pumpers and the online community. Message boards and blogs are a wonderful source of information and opinions on pumps. Fortunately most people end up happy with the pump that they choose, but it’s still helpful to learn as much as you can about the pros and cons of each brand.

It has been six months since I purchased my pump. The questions I would have liked answered then are still unanswered. The Animas/Dexcom pump has been submitted to the FDA, so there has been progress. I have some regret that I did not go with the t:slim, but for the most part I think I made the right decision. And if you think about it, it’s only 3-1/2 years until I go shopping for my next pump!

To Dose or not to Dose?

Posted on June 13, 2013 by Laddie

To dose, or not to dose, that is the question.

That’s not exactly what was phrased by Hamlet in the opening soliloquy of the Shakespeare play. But it is a question heard frequently around the diabetes online community when considering our CGM (continuous glucose monitoring) systems. And it is a question that some would argue has life or death implications.

My answer to this question is sometimes, in certain circumstances, and within certain guidelines.

My current CGM is the Dexcom G4 Platinum and it is by far the most accurate system that I have used. The numbers are almost always in the ballpark with my meter readings. Twitter is littered with my photos of identical G4 and Verio meter readings. Earlier this week I downloaded my Dex into Dexcom Studio and my 3 meters into Diasend. Comparing the 2-week reports from each, my average BG differed by only 3 points. The standard deviations were also 3 points apart and my graphs were remarkably similar. So essentially I am getting the same information from these devices.

Like everyone with Type 1, I am awash in data and make decisions knowing that none of the numbers are 100% accurate. My meters are allowed to have a 20% variance. My pump is very precise in its insulin delivery, but my body’s absorption of insulin may vary based on the location and age of the infusion set, my exercise patterns, and various hormonal excursions. There are inherent inaccuracies in carb counting. Food labels are allowed a 20% fudge factor. Fruits may differ in their carb impact based on ripeness or variety. One portion of vegetable soup might have more potatoes than another portion filled with green beans and squash. So the Dex CGM is not perfect, but neither are my other tools.

I start my day with a fasting BG reading on my meter. If a correction is needed, I bolus for it. If my Dex calls for a calibration, I record the number. After this I will rely on my G4 for my breakfast bolus and throughout the morning for alerting me to lows and highs. Late morning I’ll take a fingerstick and make sure that the Dex is still on track. If a correction bolus or snack is needed, I’ll take it. Then when lunch comes, I’ll usually use my Dex as the guide for my bolus along with carb counts. Same for the afternoon, dinner, and throughout the evening. I use the meter for a “grounding” every few hours, but rely on the Dex the rest of the time.

I play the game of mistake management and try to minimize the number of diabetes mistakes that have serious consequences. If I am woken at night by a high alert from my Dex, I will double check the reading with my meter before taking a correction bolus. That is because an overdose of insulin while sleeping is potentially life-threatening. If my Dex wakes me with a low alert, I often pop a couple of glucose tabs from my bedside table without a meter confirmation. The result of a Dex mistake in this case is just an errant high from eating glucose tabs.

Similarly, I take driving with Type 1 Diabetes very seriously. If I’m on the south side of BG 100 or have any symptoms of a low, I will always test with my meter before driving. No way that I want to have a low at 65 miles per hour. On the other hand, if the Dex shows me level at 110 and I feel good, I’ll probably trust the Dex and head out. At this point I’m comfortable I’m in a target range that is safe although I may not know the exact number.

During the daytime, I usually trust the Dex high alert and bolus based on it. I have to admit that I get some false lows from my G4, but I get very few false highs. Sometimes it will alert me with a 180 reading and I think “no way!” But the Dex is usually right.

My trust in my G4 is bolstered by an average of 8 meter readings a day. Some of these are for calibration. Others are before driving or halfway through a round of golf. In general, my meter helps me trust my Dex while the trends on my Dex helps me trust my meter. (As a caveat, I don’t trust the Dex on the first day of sensor insertion and I lose confidence as it approaches Day 14.)

In summary, I confidently bolus throughout the day based on my Dexcom G4 readings. Why can I do this? First, because I also test a lot with my meter. Secondly, because I have the Dexcom G4 to alert me if I make a mistake.

(I will end this post by reminding everyone that Dexcom and our doctors advise us never to bolus based on our CGM numbers.)

Diagnosis by Pancakes

Posted on June 10, 2013 by Laddie

I was diagnosed with Diabetes Mellitus in mid-November 1976. I wasn’t diagnosed with Type 1 diabetes. I wasn’t diagnosed with Type 2 diabetes. Those terms were not in use in the 1970’s. I went to the eye doctor because I was having blurry vision and thought I needed new glasses. I suspect I smelled like fruity nail polish remover, and he told me that it was likely I had diabetes and should see a doctor immediately.

I was 24 years old, recently married, and although I had heard of diabetes, I was totally ignorant about the specifics of the disease. I dutifully went to see the recommended internist the next day.

Now you’re expecting to get to the part of the story that says he took my blood and tested my c-peptide and GAD antibodies. Those tests were not part of the laboratory diagnostic arsenal then. I was given a urine test and told to go downstairs to the medical office restaurant. I was instructed to have a pancake breakfast with lots of syrup and come back in two hours. Once again I was given a urine test and was immediately told that I had diabetes. I didn’t know enough about diabetes to be worried, scared, or surprised. This was a Friday and I was told to go home for the weekend and be admitted to the hospital on Monday morning. That seems odd to me in retrospect, but Monday morning came and I started my life as a PWD with a 4-day hospitalization. Like many Type 1’s, I learned to give shots on an orange. I was discharged with a 2,200 calorie exchange diet and prescribed Ketodiastix for testing my urine for glucose and ketones. I was instructed to take 35 units of Lente insulin daily in one injection. No mealtime insulin in those days.

Not once in the 36 years since my diagnosis has any doctor suggested that I wasn’t in the category of what we now call Type 1 diabetes. I have still never had a c-peptide or an antibody test. My understanding is that I will be required to have a c-peptide test when I reach Medicare age in order to keep my pump.

With today’s sophisticated lab tests and the increased knowledge about diabetes, I don’t understand why so many young adults are being misdiagnosed as Type 2. They are given pills instead of insulin and often must struggle for months or years to get a correct diagnosis. Many doctors are blinded by the Type 2 epidemic and are not considering that the incidence of Type 1 in all ages is also increasing.

It makes me think that maybe a pancake diagnosis wasn’t so bad after all.

Why is it a Mistake?

Posted on June 6, 2013 by Laddie

On Sunday I went to my grandson’s birthday party. My blood glucose was in the 90’s at the beginning of the party. I had no snacks. For dinner, I had one small roll with cheese along with some celery and other raw veggies. As far as I know, I bolused properly for what I ate. Instead of birthday cake and ice cream, I had a cup of tea.

When I got home, my blood glucose was 186. My typical reaction would be to look in the mirror and say that I made a mistake. I hardly ate. I estimated the carbs and took a bolus. I wasn’t even tempted by cake and ice cream and had none.

So what did I do wrong?

Not a darn thing.

Stop the Guilt Already!

Posted on June 4, 2013 by Sue from New York

Please welcome Sue from New York who will be one of the writers for this blog. Today she is addressing a subject that we all know too much about. To learn more about Sue, click here.

My son was born in 1971, a beautiful, happy, healthy baby. His sister was born in 1974. In 1975, shortly after his fourth birthday, my son began to lose weight, wet the bed, and he developed an unquenchable thirst. We took him to the emergency room of the hospital late one night, and we were told that he was a juvenile onset diabetic. He was admitted, and we learned to give shots of insulin into an orange first, and then to our little boy. When we brought him home, my mother in law expressed guilt because as an adult onset diabetic, she felt she was responsible for her grandson’s diabetes. At that point my mother informed me that her cousin was a juvenile onset diabetic since the age of three. So I was then able to tell my mother in law that it was not her fault that my child was now diabetic, and I could now bear the blame. At one point I told myself that I wished it was me with the diabetes instead of him. I subsequently developed type 1 diabetes when he was 17.

Raising a diabetic child in the 1970’s and 1980’s was a real challenge. Blood sugar testing was nonexistent, and we checked his urine to see how his control was. He was on one shot of insulin a day. We mixed his NPH and regular insulin in the syringe in the morning, and he was on a fairly strict schedule of meals and snacks to coincide with the action of the insulin. We tried to explain to our young daughter why her brother couldn’t eat sugar, but something got lost in the translation. She had a recurring nightmare that her brother would eat sugar and explode. And she felt responsible for this nightmare, because she wasn’t watching her brother carefully enough.

There has been a theory that type 1 diabetes may be caused by mothers giving their babies milk before they are six months old. I’m pretty sure I put milk in his bottle before he was six months old. Oh great.

On July 2, 1999 my son was living and working in New York City, seeking work in the theatre, his passion. One day he stopped to buy a sandwich and was on his way to the subway, where he planned to eat the sandwich. He awoke in Bellevue Hospital with a broken left leg after suffering a hypoglycemic episode. He thinks he was hit by a taxi, but there were no witnesses available when the ambulance arrived. We drove 4 1/2 hours to the hospital, picked him up and brought him back to our home to recover. My husband took him to PT three times a week, and a couple of months later he had surgery again on his leg. When he recovered we returned him to his apartment in Queens. A couple of years later he developed proliferative retinopathy and needed laser surgery, which continues to this day. He had to give up his dream of acting and get a job with health insurance benefits to pay for his laser treatments. Within a month of his accident, my mother had a debilitating stroke which left her paralyzed on her right side. My son told me last week that he was responsible for her stroke because of the stress she suffered when he broke his leg. I did my best to inform him that a stroke is not caused by stress, but by high blood pressure and/or a blood clot. So he lived with guilt for 14 years that was not his doing.

Diabetes is a full time job. It’s not our fault that we developed diabetes. We need to learn to deal with the day to day existence of living with it, and let go of the guilt we associate with it.

Reflections on Six Months with DSMA Live

Posted on May 31, 2013 by Laddie

I decided at the beginning of 2013 that I was going to listen to the entire archives of DSMA Live. To tell you the truth, I can’t even remember why I decided to do it. So for now, I’ll say I did it “just because.”

DSMA Live Factoid: The archived podcasts are available through iTunes (search DSMA Live) and at BlogTalkRadio.

Diabetes Social Media Advocacy (DSMA) is the brainchild of Cherise Shockley. BlogTalkRadio states that “The mission of DSMA is to promote social networking in all its forms (Facebook, Twitter, YouTube, etc) in order to educate and support all people affected by diabetes.” That is already out of date because Cherise has bigger plans. She realizes that not everyone with diabetes is part of the DOC (Diabetes Online Community) and she wants her inclusive message of support to be available to everyone, online or offline.

Because I cannot do justice to the scope of everything that DSMA is involved in, I encourage you to visit the DSMA website. In addition to DSMA Live on Thursday evenings, you’ll learn about the Wednesday night TweetChat, the ‘Rents show for parents, and the en Vivo! show in Spanish. There is also information about the monthly Blog Carnival and the weekly WDD Blue Fridays Initiative.

DSMA Live Factoid: The only really bad show was the inaugural show on October 28, 2010. It was an on-air technical rehearsal where Cherise, George, and Scott spent an hour asking “Can you hear me now?”

The early DSMA Live shows were an extension of the TweetChat, and the hosts and featured guest discussed the questions that had been posed the night before. Over time the shows morphed into what is now an interview and discussion format.

DSMA Live Factoid: Three of the first five guests interviewed on DSMA Live were named Scott.

The guest list from the first 2-1/2 years of the show is a veritable Who’s Who of the diabetes community starting with the well-known hosts: Cherise, George Simmons, and Scott Johnson. If you spend time in the DOC, you’ll recognize the names of the many bloggers and advocates interviewed including Manny Hernandez, Kerri Sparling, Wil Dubois, and Amy Tenderich.

Karen Graffeo, a blogger and the founder of Diabetes Blog Week, made a comment that characterizes the journey of most of the people interviewed. When asked about the background of Diabetes Blog Week, she said: “So I started thinking that it would be great if someone did that for the diabetes blog community. So then I thought that maybe I should try to do it.” One after another the featured DSMA Live guests saw something that needed to be done and they did it. They weren’t superstars. They were people who started writing about their lives and reached out to make the world a better place for everyone affected by diabetes.

DSMA Live Factoid: Two of the featured guests were 8 years old or younger.

Some of my favorite shows were introductions to people I had not “known” previously. It was fun to hear the stories about their blogs, podcasts, advocacy groups, and start-up companies. Especially unforgettable were the crazy people who climb mountains, participate in triathlons, and drive race cars while juggling the never-ending demands of diabetes.

Also very interesting were the conversations with insiders in the diabetes industry such as Dr. Henry Anhalt, Director of the Artificial Pancreas Program at Animas, Lane Desborough, a Product Strategist at Medtronic, and Sean Gallagher, the Senior Director of Marketing at Insulet Corp (Omnipod). DSMA Live also introduced me to Professor Jean Claude Mbanya, a physician from Cameroon who is President of the International Diabetes Foundation.

DSMA Factoid: Art therapist and blogger Lee Ann Thill is the sole member of the 5-Time Featured Guest Club.

As my dog Abby outlined in her post yesterday, I listened to 149 DSMA podcasts in a 6-month period mostly while walking the dog. I got a lot of exercise. I got a lot of education. I got a lot of inspiration. All great things for a successful life with diabetes. I encourage you to put on your walking shoes and give DSMA Live a try.

Abby the Black Lab Discusses DSMA Live

Posted on May 29, 2013 by Laddie

Laddie: In tomorrow’s blog post, I will write about my 6-month journey through the archives of DSMA Live. DSMA Live is a weekly interview show hosted by Cherise Shockley, George Simmons, and Scott Johnson. DSMA stands for Diabetes Social Media Advocacy and more information can be found at the DSMA website. Today my dog Abby is giving you a preview of the important details.

Most dogs don’t know about DSMA Live. I do because on January 1st of this year, my owner Laddie decided that she was going to listen to all of the archived DSMA Live shows. Since that decision involved neither dog biscuits nor tennis balls, I totally dismissed it and curled up by a sunny window to take a nap.

Hearing the rattle of my harness and leash, I jumped at the opportunity for a walk. Laddie grabbed her pink iPod Nano and thus began our winter and spring of listening to DSMA Live. Well, actually I didn’t listen. My head is not properly shaped for ear phones. I just walked, stalked rabbits, and sniffed dog “Tweets” on mailboxes and fire hydrants.

Now you may not know what DSMA Live is. Neither do I. All I know is that because of this series of podcasts, I was the beneficiary of multiple long walks that far surpassed our normal dog walk frequency and length.

From January 1 until May 16, 2013, Laddie listened to 149 DSMA shows. According to her Fitbit pedometer, our normal pace was a 20-minute mile. Or as I prefer to think of it, we walked 3 miles per DSMA show. We could have gone faster, but this pace included dog potty breaks and socialization with other canine/human combos.

My favorite stat is that in 5-1/2 months, we walked approximately 447 miles accompanied by DSMA Live. That’s an average of 3.3 miles per day. I am indeed a lucky dog and my ever svelte figure is a result of my daily exercise.

Now that we are only listening to current episodes, I realize that the number of my DSMA walks will be reduced. But the addition of spin-offs such as the ‘Rents show and the en Vivo! show is a reminder that there will be a growing number of podcasts to inspire dog walks.

So to other dogs, I say: “I am a DSMA Dog. Are you?”

(By the way, I do not like Wednesday night DSMA TweetChats. All humans with diabetes totally ignore their dogs during that hour and focus on their iPads instead.)

Choosing a Blog Name

Posted on May 28, 2013 by Laddie

The hardest part of starting my blog was choosing a name. Every website in the Diabetes Online Community seems to have a perfect name and I was convinced that all of the perfect names had already been taken. Of course that’s silly and I assume that almost everyone struggles to pick a name that captures their personality and attitude towards diabetes along with a bit of whimsy.

The first names I considered were things like Doors Wide Open, One More Day, and A Balancing Act. These are all very relevant to my diabetes. In recent years, I’ve slowly been opening the doors I’ve hidden behind for years in relation to my diabetes. We all know about doing it one day at a time and for one more day. We try to stay balanced on the tightrope of Type 1 by juggling the many tasks required to keep our blood glucose somewhere in the zone between dangerously low and off-the-chart high.

The above names were already taken because they apply to everyone’s life, diabetic or not. Doors Wide Open is a book as well as a jazz band. One More Day refers to a four-part comic storyline about Spider-Man. A Balancing Act is a yoga studio in South Carolina as well as the name of a book.

So onward to more names. I considered A Toast to Type 1 because many of my blogging ideas surface during my second glass of wine. But that wasn’t the best idea because drinking and diabetes can be a very serious subject and it would be bad form to make light of it.

Then I really got inspired by Diabetes in Counterpoint. I am a former pianist who enjoys contrapuntal music where diverse melody lines merge into one harmonious composition. Counterpoint has tons of rules, five species, and even a dissonant type. What could have more types and dissonance than diabetes?! But this was way too esoteric and I didn’t want “Diabetes” in my blog title. Am I still hiding, or do I just want a little more flexibility for my blog? I vote for the latter.

The next titles are where I started to get into trouble. I thought about the over-under in sports betting. I am almost always over or under on my BG readings, so this seemed a good fit. I will provide no links here, but over-under has some strong sexual overtones that I had never heard of and I am lucky not to have gotten far with this idea.

And then I jumped at No Sissies Allowed. We plus-60 year olds always say that growing old is not for sissies. Well, I would say the same thing for diabetes. I couldn’t believe that this domain was still available. Fortunately I Googled this phrase and found out it has morphed into a very anti-Gay phrase. Or maybe it always was and I just didn’t know it.

On another track of perfect blog names, I played with Guess and Go. A nice ring, but I really do test often. I didn’t want to introduce my endo to social media with that idea. Then there was Test and Guess followed by Test and Go.

Finally I decided on Test Guess and Go. I test a lot. I guess a lot because no matter how much I follow the diabetes rules, it’s always a crapshoot as to what the day will be. But through 36 years of Type 1 Diabetes, I always go. It has never dawned on me to stop my life for diabetes. Surely I’m more neurotic than I would have been without diabetes, but maybe not. So I went yesterday. I go today. And gosh darn it, I’m going to go tomorrow!

Test Guess and Go.

Why Now?

Posted on May 25, 2013 by Laddie

I’ve thought about starting a diabetes blog for a long time, but I never got very far. Once or twice I’ve looked at blogging sites and several times I’ve jotted down potential blog names. What has stopped me? Laziness maybe, but more likely fear. Fear of doing something I don’t know how to do. Fear of starting something that would be a continuing responsibility. But mostly fear of exposing myself to the world, to my friends, to my family, and I suppose to myself.

I used to be a pianist and accompanist. I found it easier to play for crowds of 100 to 500 people than I did for 1 or 2 people. I’m very good at anonymous. I’m not so good at one-to-one and face-to-face.

The DOC (Diabetes Online Community) has become a family to me. Most of the blogs I read are written by Type 1 diabetics who are in their 20’s, 30’s, and maybe inching into their 40’s. A few are older, but most are my children. They’re the mobile generation. They blog, they vlog, they friend on Facebook, they Tweet. Boy, do they Tweet. They welcome and embrace me, but maybe it’s time for me to step out of their shadow. I think there is room for my voice in the DOC and I hope that I can help and inspire others in the way that I have been helped and inspired by others.

I would like to thank Scott Johnson who posted my first guest-post at his website in April of this year. The positive responses that I received from Scott, my family, friends, and the DOC gave me confidence to continue on this journey to start a blog. I certainly know how to debut at the top by writing what is probably the best post I’ll ever write and by being featured on one of the most popular and long-lived diabetes blogs. You can find that post here: http://scottsdiabetes.com/2013/04/safe/

I’m 61 years old and have had Type 1 diabetes since age 24 in 1976. I’ve always had good insurance and have never had to worry about the availability of insulin and test strips. Insulin pumps and CGM’s have been readily approved. I have worked hard to live a healthy life with diabetes, but there are days that it is very difficult to do that. Although I have lots of autoimmune issues and some of the comorbidities that go along with Type 1, I’ve been spared the major complications of eye, nerve, and kidney damage that can occur with long-term diabetes.

The medical system in the United States is changing and I really wonder what the next years will bring for those of us with diabetes. My current insurance is through the high-risk program in Minnesota and that will change in 2014 when insurance pools with no pre-existing condition clauses become effective under the Affordable Care Act. Although my premiums may be reduced, I think that I will end up with poorer insurance with this change. And before I know it, I will be on Medicare with a new set of rules that will save me lots of money in some areas, but will try to dictate that I live with 3 test strips a day and throw away my CGM because it is not proven technology.

I hope to use my blog to chronicle my journey through life with diabetes. Many of my posts will be reflections on the last 36 years as well as my opinions on current issues. I have invited several online friends who are about my age to regularly write posts on this blog. These are women whom I’ve bonded with in the DOC and they have been an inspiration to me as I’m sure they will be to you.

Thanks for visiting my website and please come back!