Tuesday, December 12, 2017

My Experience at the DiabetesMine Innovation Summit

DiabetesMine™ is a popular website on all things diabetes: trends, industry-wide breaking news, and spotlighting patient blogs that I have been following for a number of years. In August when I saw a call for the 2017 Diabetes Mine™ Patient Voices contest, to win a full scholarship to attend the Diabetes Mine Innovation Summit in Palo Alto, CA, my interest was piqued. When I further investigated and saw that this year’s application topic was “Bypassing the System and Innovating Locally,” I knew I had to apply. The topic aligned perfectly with the advocacy work I’ve been engaged with locally in Massachusetts and New Jersey to better support adults living with type 1 diabetes. I was shocked, thrilled, and honored to have been one of ten people selected to receive a scholarship to attend.

I wasn’t sure what to expect or who would be attending, besides the other Patient winners but as soon as I walked into the conference room filled with over 100 industry leaders (and my first endocrinologist from Joslin Diabetes Center in Boston), I knew it was going to be a good conference. The focus of the event was on diabetes tools, support services and problem-solving, with a secondary focus on linking apps and tools to outcomes.

The day was jam-packed with ten sessions. It started with a keynote from Brian Hoffer, founder of Gestalt Design who led us through an engaging presentation titled “Transforming Healthcare Through Design: From Startups to Clinical Consumers.” Other sessions were focused on emerging apps and tools to help make living with diabetes a little easier. The program ended with the 2017 DiabetesMine™ Patient Voices Survey & Usability Innovation Awards.  

Of the ten sessions, there was one in particular that resonated with me more than the others, though they were all interesting and educational. A panel discussion titled “Diabetes Device & Coaching Services” featuring tOneDrop, MySugr , and Livongo that specialize in glucose meters and coaching services. For this presentation, each company was represented by a patient super-user and a company representative to provide different points of view on a variety of topics. What stood out to me with all of these meter companies that have coaching services and subscription-based test strip delivery was the importance each super-user felt about having support at their fingertips when they need it, and that each company was doing its best to help provide a service to help people with diabetes to succeed at every step of the way.   By offering a variety of mail order strip subscriptions at varying price points by customer need that are typically lower than the average insurance co-pay for similar quantity,  they have simplified an often otherwise complicated process.  Gone is the often messy process of obtaining a prescription, waiting to find out the cost or even if your strips are covered by insurance, followed by receiving the strips.  Scott Johnson from MySugr said it best “…it’s about making diabetes suck less at each touchpoint.”

The day was filled with great presentations, as well meaningful conversations during breaks and lunch. It was a unique experience hearing from industry leaders all that they are working on to support everyone living with diabetes.  I learned a lot and left feeling more inspired than ever to continue and further my own advocacy work.

I'm glad to have experienced this event with Mindy Bartelson

Wednesday, November 8, 2017

Feeling Judged

Despite the fact that I tell myself that I am not judgemental, of course, I am.
At work, at home, at the gym, at the grocery store, on the train,  I am always assessing and observing and yes, judging.  "Wow, that person's hair is a bright purple"  "Man those pants are tight" "Those are some high heels" "How many rings are in his ear?" It's human nature.   But what we do after that passing thought is what counts.

I often feel this same type of judgement about my diabetes and how I manage it.  You know those looks: "should you be eating that?"  "you're taking your insulin RIGHT before you eat?" The raised eyebrows when you order a stack of gluten free pancakes.  "You're not changing your lancet?"  Ok, that last example was made up -  I've never been judged for that one.  😃  And the worst part is that sometimes these looks are from other people with diabetes (PwD).  To me, that hurts more than well-intentioned Aunt Sally who really doesn't know better and thinks she is helping.

I start to get angry, and upset, when PwD tell me how I'm killing myself (yes, that really has been said to me / posted to me on social media)  because of what I eat.  Just so you know, I'm not eating rat poison and if that were the case you have every right to tell me I'm hurting myself by eating it.  What I am eating is different from what the people in these scenarios have chosen to eat.

There's a saying that words matter, and it's true.  Case in point two recent conversations about food, with PwD:

Cindy to me:  "I can't believe you eat bread. I don't know anyone who eats bread who has an A1C under 10.0 or well-managed diabetes."
     Cindy and I did not have a lasting conversation. Sure I could have used this as a teaching moment, but I wasn't feeling it.  I could have told her that since starting a CGM 7 years ago my A1Cs have been in the low 6s, and used it as an educational moment, but at that time I didn't feel it was worth my effort, and looking back on it I wouldn't change my course of action.  
Cindy and I haven't spoken since. 

Marie to me:  "I have found cutting out bread has helped me better manage my blood sugars, so I'm making an effort to limit how much of it I eat."
    Marie and I spent the next hour sharing different tricks and recipes and ways we had come to decide the right path for us.  I share with Marie that I felt diabetes often mandates when I can eat, but I tried hard to not let it mandate what I eat.  For example:  with a low blood sugar immediately; with a high, not until the number was in a range I was comfortable with.

I have also recently learned that I am a bit of a control freak in some aspects of my life and that having T1D plays into that.  What I have to remind myself is I can't, nor should I, try to control someone else.  Even though I may really really want to, from a good place, it's not my business.  Unless you are eating rat poison.

Tuesday, October 17, 2017

My Experiences using MiniMed 670G Hybrid Closed Loop System

High-level review:
I have been using the 670g since April. It was not love at first bolus for me with this system.  It took more time than I expected to fine tune it which left me feeling pretty frustrated.  I had pretty good diabetes management before starting on the system, with average A1C-s in the low 6.0s and blood glucose levels at 81% in range.

When I started my first insulin pump, I had one basal rate and one carb to insulin ratio.  And it took quite some time for me and my health care team to learn how to adjust everything to get it to a good spot.  Starting on the 670G was kind of like that.  It was frustrating, but, with some time, patience, attention to CareLink data I have come to love it.  

In more Detail
Before the MiniMed 670G hybrid closed-loop system:
Before starting on the 670G system, I typically experienced 2-3x low blood sugar events that required treatment a day. Lows typically happened first thing in the morning, and after exercise, sometimes up to 24 hours after exercise (lag effect).

Since the MiniMed 607G hybrid closed-loop system
Within hours of starting on the 670G, in manual mode, suspend before low kicked in!  I did cancel it the first few times it engaged though, not trusting that my blood sugar wouldn't then skyrocket from not received any insulin.  After a quick check in with my trainer who suggested I trust the system, I did just that.  The next time suspend before low engaged, I let it do its thing, and it worked like a charm.  

Lows still happen, but not as frequently, and not as extreme as before.  I may have one a week where my blood sugar will drop quickly and I'll need to treat with 1 glucose tablet.  

More from Medtronic on Suspend Before Low:
With the Suspend before low feature on the MiniMed 670G system, your pump stops delivering insulin before you go low. Learn more about this feature http://bit.ly/2iluQDv

Before the MiniMed 670G hybrid closed-loop system:
I worked with my endocrinologist and diabetes exercise physiologist to come up with a plan around food, insulin, and exercise, specifically Zumba.  We agreed that my target blood glucose level should be close to 150 going into a Zumba class. 
Staring a temporary basal rate an hour before exercise, ending 30 minutes before class ended was the recommendation that they provided me with.  I had varying degrees of success with this plan.  Sometimes my blood sugar would go up, sometimes it would go down. Sometimes it would go up very high very quickly then drop quickly.   Sometimes it worked without issue. 

Since the MiniMed 607G hybrid closed-loop system
I started on the system this past April and couldn't wait to exercise and try the temp target. The temp target is designed to keep sensor glucose value around 150, the same goal my healthcare team gave me as well.   I wasn't convinced it would work, but I followed the recommendations of my health care team and started the temp target an hour before Zumba class, and set it to end 30 minutes before the end of class. It worked!  My starting blood glucose value was 147 (sensor glucose was 149). My blood glucose level just after class ended was 155, with sensor glucose at 152, and did not spike or drop afterward. 

I've now been using the 670G system for  six months and happy to report that my results using the temp target have been consistent.  As with starting anything new, I do recommend consulting with your healthcare team to review how to adjust your diabetes management around exercise.

Before the MiniMed 670G hybrid closed-loop system:
High blood sugar for me is anything over 160.  I might not do a correction at this point, but I’d definitely pay attention to how quickly my numbers were climbing at this number.  I’d have 1-3 a day that would require a correction.  The worst was the swings from low to high or vice versa due to exercise (addressed above), but most common from over treating a low.

Since the MiniMed 670G
Highs still happen.  However, the swing from low to high has improved.   My CGM graphs no longer have peaks and valleys of highs and lows, but a nice rolling line. Highs still do happen, but now that means 250, vs 35 since the system adjust the auto basal rate.  There are time when I have to correct, but

Guardian Sensor 3:
I have used Medtronic CGM technology since it first came on the market - SofSensor, then Enlite, and now Guardian Sensor 3.

The SofSensors worked well for me, but I was not a fan of the insertion process so I didn't use them often. I truly loved the Enlite sensors.  From day one they worked really well for me, so when I heard the hype about how much better the Guardian Sensor 3 was, I was skeptical. 
But, they have been better for me than even the Elites. Most of the time my blood glucose value is very close to the Guardian Sensor 3 sensor glucose value - usually within 5%, often less.  The rare time it has been greater has usually been from me calibrating at a less than optimal time (like after exercise).  

Your experience may vary:
You know the saying "your diabetes may vary?"  Your experience with the 670G may vary too. It seems as though some folks start the 670G and are in the 120-range from the start, And for others, like me, it has taken some time to get there.  It took a good 3-4 months for me to "get there" but I really do love it now. 

Feel free to reach out to me if you want to chat on one!
Twitter: @PhyllisKaplan 

Sunday, September 10, 2017

Fundraising x3 and a $5 Ask

Fundraising for 3 organizations at the same time IS a little challenging, but I've never been one to not try to do something because it was difficult.  There are so many people in need across the country due to weather, that it has become understandably harder to raise money for things that aren't emergency related.  However, I'll keep trying, and here's why.

Each of the three organizations I am raising money for has had a positive impact in my 40-something year career with type 1 diabetes, and that's why I'm doing what I'm doing. I hope that after reading the stories you might be inspired to donate $5 to one of the three.  Every penny really does count, and no donation is too small.  $1 can make a difference!

Camp Nejeda Foundation:

There are so many reasons I loved attending diabetes camp.   I was surrounded by people who "got it" and understood immediately what I needed not just the medical staff, but the counselors and other campers as well.  Camp Nejeda is also where I started to formulate my diabetes-self, the stepping stone to how today, so many years later, I still associate myself with my disease.  It was at Camp where I learned skills to handle the emotional and psychological impacts of living with diabetes.
Camper cabins at Camp Nejeda

The magic of diabetes camp didn't end when I stopped going.  The friends and connections I made then are my friends for life   Thank goodness for social media and email  both help to stay in touch and getting support so much easier than sending a letter in the mail (though I do miss those days!)

More recently Camp Nejeda has understood that until there is a cure for type 1 diabetes, adults with type 1 need support as well.   I have been working with them for the last 3 years (and planning for 2018) on the Camp Nejeda Survive and Thrive Bootcamp weekend for adults with T1D - a weekend filled with education, support, and fun, for adults 18+ (see 2017's program: http://bit.ly/2xeA0co)

Fundraising link: http://bit.ly/2xXNRBM  ($280 of $800 left to raise by September 25th)

MiniMed 670G

Where do I start with JDRF...?  When I was diagnosed, there was no 'R" in JDRF. It was JDF - Juvenile Diabetes Foundation.  The research they are working on is not only for the cure, but the prevention of diabetes, and equally important, better treatment options for those of us with t1D today.
I can't begin to adequately do justice for all they are involved with, but I can tell you how important it all is, and how important donations are to keep it all going.  They were even involved with bringing the MiniMed 670G hybrid closed-loop system (the one I'm using) to market! And they've helped many other of the diabetes tech companies as well!  

Fundraising link: http://www2.jdrf.org/goto/helpcurep
 ($620 of $2,500 left to raise by October 1st)

American Diabetes Association

Last but certainly not least, is the American Diabetes Association.  Until recently, I haven't had much involvement with the ADA. That all changed in 2015 when I broached the subject with them about local events for adults with type 1 diabetes.  They were game, and we worked together on a handful of events over the last few years.  I have also have (slowly) become involved in government advocacy through them.   The adults with type 1 programming is on hold due to some restructuring but I do hope to bring it back.  Fundraising linkhttp://bit.ly/2eQ9WxH ($215 left to raise of $250)

There so many deserving organizations that are in need of support from us, I know none of us can donate to everyone.  But I am asking for you to consider a $5 donation to one of the organizations above.  Just think - if all of my connections were able to do this, I'd have the remaining $1,510 raised in no time!  Many thanks to those who have already donated, and have supported me in other ways.  Much love to you all! 

Tuesday, August 8, 2017

Yesterday: Diabetes & Exercise Phyllis 1, diabetes 0

Yesterday I had a longer than usual afternoon at the gym by design, and that proved to be a bit challenging around blood glucose levels and insulin dosages (bolus, with an insulin pump).
From 5:30-6pm I had personal training. THe workout was hard and left me a hot and sweaty mess. Sign of a good session. I planned earlier in the day to go to a 6:30 Zumba class, figuring the 30-minute break would be good.
The trouble with this plan is I wasn't sure how to set my exercise insulin basal rate for that length of time, with a rest in the middle. Typically I'd start it an hour before a work out of any type, and end it half an hour before the exercise class was due to end. But that didn't fit into the scheduled. So I decided not to set the exercise basal rate.
My blood sugar was 197 after training which was a bit high -- but I didn't want to do a correction bolus (dose) of insulin because that insulin would still be going through my system during Zumba. The problem with that is this insulin would cause my blood sugar to drop fast during the cardio work out since the cardio would cause my body utilize the insulin much more efficiently than if I weren't exercising.

Add to the equation that I also needed a small snack between the workouts for energy.
I decided to have a protein bar, for which I normally would have dosed insulin. I took an educated chance and didn't. 15 minutes into Zumba my CGM beeped high (still 197, but not going rising. At minute 40 I checked my CGM and it displayed 140 with a down arrow (dropping somewhat fast). I was determined not to let diabetes win. I slowed down my pace, I stopped arm movements which decreases intensity, and took smaller steps.

I finished the class with a sensor glucose reading of 110. I felt triumphant that I won! It's a somewhat small victory, but an important one for me.

Educational moment: For me, insulin and food near exercise can be 2 of my biggest challenges with diabetes management.

Usually, I set a temporary insulin rate on my pump to try and keep my blood sugar around 150, slightly higher level to help mitigate some of the obstacles I experienced last night, but for whatever reason, I didn't do that last night.

This is one of the many reasons I am hoping to raise $2500 for this year's Boston JDRF One Walk About 55 days to go to raise $1500! Donations of any amount - $1, $5, $10 are very greatly appreciated! Link to fundraising page: http://www2.jdrf.org/goto/helpcurep

Thursday, August 3, 2017

Diabetes Messaging Can be Confusing

As we enter diabetes walk season the north east, and I ramp up my own fundraising efforts for JDRF, I can't help but stop and think about my own mixed messaging with regards to how I talk about living with type 1 diabetes (T1D)

On one hand I have mantras "diabetes doesn't' stop me"  or "diabetes strong" and the like.  But then during fundraising season I find myself switching gears and talking about how hard it is, and how much we need a cure and better treatment options.

Which is it?  Is it hard and difficult, or does it not stop me?  It's both.    No matter how you slice it living with diabetes is hard, and it stinks. However in order for me to thrive despite this disease and all it has to offer, I try to live in the present and not dwell on the hard stuff but get through it and move on.

Maybe my mantra should be "diabetes may slow me down, but doesn't stop me from accomplishing my goals"  but that is too long for a hashtag, don't you think?  #diabetesmayslowmedownbutdoesn't stopmefromaccomplishingmygoals.

I hope that clears up a little of the confusion and answers this question that has been asked of me more than once.

Side note: this year I'm hoping to be able to raise $2,500 for my JDRF fundraising efforts.  A cure may be a long way away, but researchers are working on ways to prevent it,  quicker insulin, and so much more that helps us all today util that cure comes, and JDRF helps fund a lot of that.