A Diabetes Data Machine

Posted on October 26, 2016 by Laddie

Laddie_Head Square I am currently involved in a couple of projects that require tracking my diabetes data. The good part is that some of the data is automatically logged with little or no input from me. The bad part is that I am using 3 different apps on my phone and must enter food information twice. The good part is that I have learned new things about my diabetes. The bad part is that I am uber-involved in the input of data and not paying much attention to the output.

Big Blue Test

Most of you are familiar with the Big Blue Test sponsored by the Diabetes Hands Foundation. Every test logged between October 14 and November 14 will result in a $3 donation to support people with diabetes. Three charities will receive $5000: Diabetes Sisters, We Are Diabetes, and the Riverside Community Diabetes Collaborative.

The Big Blue Test is by far the easiest of my current data projects. I use the app on my phone and it’s a quick 30 seconds to record my exercise. Although participation is easy, I am no Big Blue Test slouch. Yesterday I managed to input 5 (!) tests. Dog walk. Gym session. Rake. Rake again. Dog walk. That translates into a $15 donation for diabetes.

If you are participating in the Big Blue Test, keep up the good work. If you are not involved, check out this link to learn more. It’s not just walking and running. You can include housework, yard work, weight work, and dancing. You can help a couple of diabetes groups while receiving the physical and mental benefits of moving your body. Sounds like a win for all.

mySugr Consulting

I continue to be a beta-tester for the mySugr consulting module. As outlined in my September post, mySugr is launching a feature to allow virtual coaching from Gary Scheiner and the team at Integrated Diabetes Services. You can learn more about the program here and here.

Today I am not addressing the coaching experience except to say that Gary Scheiner does a better job of understanding my D-data than I do. Instead I am writing to share that amazingly I am still logging after 3 months!

I am still learning shortcuts for entering my data and have reduced the number of data points I am tracking. I continue to enter food and carb counts, but don’t classify the food anymore as vegetable, meat, etc. Similarly I am not distinguishing between food and correction bolus amounts, just total insulin. What I like about mySugr is the ability to customize my logbook to show only the data points that are important to me and to list them in an order that makes sense to me.

My newest “cool” discovery about mySugr is that if I use the workout app on my Apple Watch, it automatically transfers the activity to mySugr. Another diabetes/life datapoint automatically logged!

Glu and T1D Exchange

Glu is the patient community of the T1D Exchange and provides an easy way to participate in research relating to type 1 diabetes. I am currently part of a study about blood sugar results and treatment satisfaction for T1 adults using pumps or multiple daily injections.

The logging requirements of this study are not difficult because most of my data goes into Tidepool’s Blip. If you don’t know about Tidepool and their innovative diabetes apps, check it out here. I download my Animas pump and Freestyle meters once a week. My Dexcom CGM automatically links with the Blip Notes app on my iPhone. My only daily responsibility is to create a Blip note whenever I eat. I click on #food and record the meal with the carb count. To make it easy, I copy and paste the meal info just entered into mySugr. Takes 30 seconds or less.

Where to from here?

The Big Blue Test ends November 14.

The mySugr logging has no end date and I’ll keep at it a while longer. But not forever.

The T1D Exchange study lasts 4 weeks.

I have learned a lot from this intensive logging. I tend to eat a little bit all of the time and now have visual proof that my BG is better when I eat more at meals and reduce snacking. I have done some basal testing and am seeing better CGM tracings. Better basals allow for less snacking.

But I am tired of logging. My head is exploding with numbers and my brain is drowning in data. I am thinking about diabetes too much and will be happy to quit recording my life in a couple of weeks. Being a diabetes data machine is fine for a while, but for me the benefit gets lost when I do it too long. For sure I will quit before Thanksgiving because there is no way I want to start the holiday season being accountable for my food decisions….

Moosh and Monsters: A Journal about mySugr

Posted on September 19, 2016 by Laddie

I am currently one of the beta-testers for the coaching module which has just been added to the mySugr Diabetes Logbook app. You may have seen a recent announcement about this feature which will allow users to receive virtual coaching from Gary Scheiner and other CDE’s of Integrated Diabetes Services. To learn about the program, check out “mySugr Coaching – your shortcut to great diabetes management” by Scott Johnson, the USA Communications Lead for mySugr. Another good source of information is this Diabetes Mine article by Mike Hoskins titled “A New Age of Mobile Diabetes Education and Coaching.”

I have been using the mySugr Diabetes Logbook full-time for two months. To best describe the experience, I am sharing my journal of insights, problems, and opinions. Please note that I am in the early stages of the coaching experience and will share that story in another blogpost.

Journal

Thursday 7/21/16: I saw Scott Johnson at an ADA seminar today. He asked if I would like some personal consulting sessions with Gary Scheiner of Integrated Diabetes Services. I have several times been a phone call away from calling IDS for help, but have never done it. So of course I said yes. According to Scott, the details of the project are still a little sketchy but will involve using the mySugr Logbook app to communicate virtually.

I like mySugr and have always thought that it is by far the best of the diabetes logging apps. But I have never been a faithful user. Too much data entry has always sidelined me after a week or two.

Friday, 7/22/16: I began using mySugr again. I have to admit that it has been a year since I last used it and it is much more functional than before. My Dexcom CGM data is my-monster automatically synced to the app through Apple Health. Most of the data entry is easy with icons and the ability to customize, rearrange, and delete line items. My personal monster whom I named Glukomutant is cute.

Friday 7/29: I am a week into logging and a day into using the Accu-Chek Connect meter provided to me by mySugr. The meter automatically sends BG numbers to my phone and the mySugr app.

The Connect meter makes mySugr infinitely easier to use because it is one more piece of data that I don’t have to type in. The hardest part of having my phone be a medical device is that I am using my sometimes-bad memory to coordinate data from the Dexcom app, the mySugr app, my pump, my meters, and my life. Scott showed me a couple of shortcuts and let me know what info he enters and what he ignores. He indicated that the app will “moosh” all data entered within 10 minutes into one entry. “Moosh” is Scott-lingo for “fetch and combine.” For example, I test my BG and enter a correction bolus. A few minutes later I decide I to eat and enter my food, carb count, and a couple of tags. It will “moosh” it all together into one log to prevent an unwieldy number of entries in the logbook.

Right now I keep forgetting bolus details the second the pump delivers the insulin and I have to go to the pump history menu to get the info. I’m sure that I will get better at remembering numbers and not get so tangled up creating an entry. Long term mySugr hopes to automate all data sources so that there is very little manual data entry.

Tuesday, August 2: Today I started a new Dexcom sensor. For the 2 start-up calibrations, I got the following numbers from the Accu-Chek Connect meter: 85 / 108. I did a 3rd test to get a better sense and got 78. This is why I use Freestyle meters. I will try to stick with the Accu-Chek meter for my trial and I did order a bunch of test strips. Out of curiosity I tested on my Freestyle Lite meter. I got 84 / 87. For consistency I used the Accu-chek to calibrate my CGM which interpreted the two tests as 96. Since Freestyle is often considered to test on the low side, the numbers aren’t too horribly different.

Saturday, August 6: The mySugr app allows basal changes by the hour or half-hour. When using half-hour, I would prefer that the basal rate still show the hourly rate because I have never thought of basal rates in half-hour segments although I often change rates on the half-hour. Does that make sense?

Saturday, August 6: I am used to reviewing my CGM tracings and feel as though I get a good overview of the “forest.” With mySugr I feel as though I am down in the trees with a lot of emphasis on average and deviation, both of which are highly affected by a single number. I think that once I have more weeks of data, the summary reports will be more helpful.

Saturday, August 6: Once again not thrilled with meter. CGM 145, Accu-Chek 118, Freestyle 138. Most of the time the meter is fine and aligns very well with my Freestyle. It syncs amazingly fast to my phone.

Sunday, Aug 7: Would like an icon for combo/extended bolus and maybe a way to log it besides using notes.

Although the ability to take photos of food is nice, I rarely do it. One of the most useful features is Search. Since I live in a rut and often eat the same foods every day, I can search by things such as “Lunch” and “Salad” and compare how I have bolused for similar meals in the past.

Thursday August 11: Love how the app learns words I use. For example: CGM, Oatmeal, Walking.

Wish pump bolus info was synced. I do everything on my pump and then enter it again on app. I have accessed my pump history more times in the last month than the previous four years. Wish I remembered it better.

Would like an icon for CGM calibration.

Sunday, August 14: I learn something new every day. When scrolling down BG numbers, I see that the ones from the Accu-Chek meter are marked with a “Verified” symbol while manual entry ones aren’t.

Saturday, August 20: I am definitely in the habit of logging, but am hitting the wall of data fatigue. It is quite horrible to see how many “interactions” I have with diabetes every day.

Wednesday Aug 24: Noticed that my step count from Apple Health is now included in the mySugr daily summary. I love data that I don’t have to enter!

Sunday, Aug 28: I need to learn more about the reports and graph. Would like to see the graph in landscape view.

Wednesday, Sept 7: When I activated the consulting module, I filled out everything. Then when I went to settings to activate the camera for a selfie, everything was lost. The perils of being a beta-tester. 🙁

Monday, Sept 12: Learned that I can swipe an entry to the right to see a menu of Share-Edit-Delete (I had been selecting the entry and pressing the Edit button). This is so much faster. Scott probably showed me this and I forgot. #OldAge. 😀

Saturday, September 17: My consulting request has been submitted and I am waiting to hear back from Gary. I usually think that my numbers are erratic and unexplainable. However mySugr reports show that my 7-day, 14-day, and 30-day summaries are eerily consistent. I am nervous about having someone review my data.

To be continued….

***

Can Advocacy Take a Vacation?

Posted on July 27, 2015 by Laddie

Laddie_Head Square I haven’t been writing much these days. I was definitely burned out after Diabetes Blog Week but was on the exit ramp before that. I began blogging 2+ years ago and although I am proud of what I have shared about my life with Type 1 and my opinions about diabetes issues, I am starting to feel that I have just about said it all. I am definitely tired of the work of writing and creating graphics for my posts. At the same time I don’t think that I am ready to quit. In my first post for Test Guess and Go, I wrote:

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…. 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.

Nothing in that statement has changed since 2013. My Medicare worries used to be about lack of CGM coverage. In mid-2015 I know people with diabetes on Medicare who are no longer able to obtain test strips for name-brand BG meters. I know several women with Type 1 who have had difficulty getting pump supplies on a timely basis. Finding a provider for Part B insulin for pumps continues to be a common difficulty.

Today I am about 20 months away from the transition to Medicare. It is too soon to evaluate my choices about Supplemental and Advantage plans. It is too soon to start hoarding Dexcom sensors and Freestyle test strips because of limited expiration dates. I am trying to purchase pump supplies on a timely basis, but it seems unwise to stock too many supplies because I will be buying a new pump in the fall of 2016.

My hope is to hang on as an active blogger in order to chronicle the journey of moving from a lifetime of excellent private insurance to the scary unknowns of Medicare. I am proud of what has been accomplished at Test Guess and Go by my writing and that of Sue from Pennsylvania and Sue from New York. I don’t want to see Test Guess and Go fade into oblivion.

Lately I have felt guilty that by not writing and actively engaging in diabetes social media that I am not doing “my job.” I am failing in my public persona as a diabetes advocate. I know that I am being too hard on myself and that starting a blog is not a life contract to do it forever.

Advocacy things that I have done in 2015:

I have followed through with every email from JDRF urging me to contact my elected representatives on diabetes-centric legislation. I participated in the campaign for the Special Diabetes Program which was successfully renewed for two years in April with $150 million allocated for diabetes research.

I have contacted my Senators and House Representative to support S. 804: Medicare CGM Access Act of 2015 and H.R. 1427: Medicare CGM Access Act of 2015. Like many people I have been frustrated that this is the 3rd generation of these bills and they are still rated by GovTrack as having 0-1% chance of being enacted. Even if you contacted your elected representatives for the 2013 and 2014 bills, please do it again for the bills of the current legislative session. Remember that Medicare policy trickles down to all insurance and even if you are not age 65, this coverage is crucial for people of all ages with diabetes. It is super easy to do if you go to the JDRF CGM Coverage by Medicare page.

I have joined DPAC (Diabetes Patient Advocacy Coalition). DPAC was co-founded by Bennet Dunlap and Christel Marchand Aprigliano. The purpose of the organization is to unify and streamline diabetes advocacy and make it easy for each one of us to have our voice heard by U.S. decision makers. If you are not yet a member of this group, please read this blogpost by Christel at theperfectD and this post by Sue at Diabetes Ramblings. Then follow the links to join DPAC.

I was fairly active through the first half of 2015 and advocated for DOC programs such as Spare a Rose, Save a Child. I attended the Unconference and generally immersed myself in diabetes stuff.

After writing but not publishing this post, I wrote a blogpost to my daughters-in-law urging them to learn the symptoms of Type 1 diabetes and share the stories of Kycie and David, two young children who recently lost their lives as a result of Type 1 diabetes.

Advocacy things that I have not done in 2015:

I have rarely used my blog to educate and encourage others to advocate for important diabetes issues.

I have continued to read every blog in my blogroll, but in recent months I have left few comments and feel bad about that. Many times I have started a comment and then deleted it after becoming lazy and paralyzed in my thoughts halfway through.

I have been mostly absent from Twitter and #DSMA and #DCDE TweetChats. Obviously it’s not a requirement to participate in things like this, but it is a sign of support to others in the DOC. In general I am not a huge Twitter person and I may start using my age as an excuse to maintain a minimal Twitter presence.

I stayed on the sidelines for the CrossFit issue. On one hand that is good because I didn’t say something stupid and insensitive. On the other hand, I didn’t rush to support the heartfelt posts of my Type 2 friends including Kate Cornell, Sue Rericha and Bea Sparks. A “Like” on Facebook isn’t a sufficient response to seeing wounds of blame, shame, and anger re-opened in the diabetes community.

Moving forward?

For now I am on summer vacation. I’m not mad or sad. You don’t need to comment and tell me how wonderful I am or give me permission to be a bum. I’m just tired of writing and being overly immersed in diabetes social media and I don’t want to feel guilty about that. Vacation Beach I’m still reading blogs and keeping up with Facebook. I’m supporting my friends doing runs and bike rides to raise money for diabetes. I’m still here and for better or worse, I still have diabetes.

Fortunately my blogging malaise has not been accompanied by personal burn-out. My diabetes is difficult these days, but I get up every morning with the optimism that I’ll do better today than yesterday with blood sugars. I’ve ordered a mysugr T-shirt and will wear it proudly while battling my D-monster “Glukomutant.” I’ve been walking a ton (#Fitbit) and working with a personal trainer. I’ve cleaned closets, played golf, read a lot of books, and done some much-needed yard work. I’ve been super-Grandma and spent a lot of time with my four grandchildren.

I have many things to write about, but I don’t want to write. Maybe by giving myself permission to not write, I’ll feel free to start writing again. Maybe. Maybe not. This is not a good-bye, au revoir, adios, or sayonara post. I kind of think of it as:

See you later, alligator. In a while, crocodile.