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.  

Friday, May 19, 2017

Diabetes Blog Week Day 5: More Than Diabetes

Today is the last day of Diabetes Blog Week, ending with a great prompt: More than Diabetes
Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)

I am having a bit of confusion with how I identify myself these days.  I am many things, but I am all of those things along with having diabetes.  

As I sit here contemplating what to share, I'll start with travel.   I have always loved to explore new places both near and far.  Some of my favorites have been  Italy, Australia, Portugal,  Japan, Spain,  Israel, Italy - oh, wait did I say Italy twice?  Alaska.  Some of my favorite aspects of travel is trying new food, shopping, and just experiencing different cultures.   Wearing an insulin pump with an integrated CGM helps make change in food, exercise, and time a lot easier.  

cats in Aruzzo, Italy 

I am an animal lover.  I started volunteering at a local cat shelter, Stray Pets in Need,  5 years ago or so, and I love it. Some days it's hard not to round them all up and take them home, but I know the hour or two I spend with them each week helps them socialize, and of course the important re-filling the food bowl and making their habitats all fresh.

I am a gluten free foodie. Yes, there is really good gluten free food out there, and often pick places of travel based on gluten free food availability.  Italy, for example is very gluten free friendly.

I'm also a daughter, sister, wife, aunt, sister in law, cousin, friend.

Most of all I'm grateful to be happy, healthful, and ready to take on what life has to offer.

Thursday, May 18, 2017

Diabetes Blog Week Day 4: Throwback Thursday: What Brings Me Down

Day 4 prompt: What Brings me Down

Click here for the 
Throwback Thursday: What Brings Me Down - Thursday 5/18 Link List

Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic

I feel fortunate that over the years,  I have gone through a small handful of long lasting bouts with burnout & borderline depression.  Not to say that I don't feel that mental tax of dealing with and managing my disease every single day.  Then there's dealing with how others deal with me and my disease, and feeling anxious about doctor appointments, and dealing with health insurance, and and and...

....and then there are great  days when it seems like the planets align and things run as they should.  And then there are the really really bad days.  Or just really bad days. Or just days.  With  diabetes, when things don't align despite knowing you've followed the right steps, it gets frustrating. You don't feel well physically or mentally.  There's not ever a break from it, even on the easier days.

This post is all over the place but it's a good example of how complex living with diabetes is.

So the question becomes, how do we deal with it all?  The answer to that varies by person and situation, but here are some of the things I've learned over the years that have helped me, and maybe they will help you too:

Stop and take a breath:When I start to get overwhelmed, which is one of my trigger points, I try and stop to take a deep breath and ground myself.   It's not always easy based on how much is running around in my head. But, forcing myself to take a deep breath, remind myself that stuff happens helps me.   I'm then able to refocus my energy away from the negative and put a plan together to move ahead.

Get moving: I have also found it helpful to get moving.  Walk, run, Zumba, weight lift, etc.

Talk it out:  I don't often need advice on how to handle something, but I do often need to vent.  It helps to get it out of my system.  Usually whatever it is passes quickly but of course there are some things that linger longer than I like.

Pet a cat:  To me there's nothing more soothing or calming than a purring cat.

To make a very long story short: take a deep breath, refocus, find something that makes you happy. It's very ok to ask for help. I'm not good at this part, but I'm working on it.

Tuesday, May 16, 2017

Diabetes Blog Week Day 3: The Blame Game

Day 3 Prompt:  The Blame Game - Wednesday 5/17
Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  (Thank you, Brian, for inspiring this topic.)

I feel fortunate that I have only one example of this that I can remember.  I had just returned to NYC after living in Boston for a while, and needed to see a doctor to get prescriptions.  This appointment was with a random primary care physician I found locally to where I lived.   The first thing she asked me was what my last A1C was.  She didn't ask me my history, she didn't ask me how things were going, just straight to the A1C question.    Here's the thing with me, over the years I've had many experiences like this, and I have gotten quite, uhm, feisty with my responses.  So I don't have to play the "what should they say game" as I told her right to her face.  

My response "Perhaps we should start with asking me what my history is,what my last few A1Cs are, or even just to chat, instead of going right to your textbook question and focusing on the A1C.  Maybe this has been the best A1C I've had in years, but since we are new to each other and you don't yet have my medical records, you are making an assumption about me based on one data point."

My mom cringes when I do stuff like this.  But there's only so many of these types of interactions one can take and you pop.  My filter was off, I was tired, tired of these types of conversations and well tired.  Amazingly she did write my my prescriptions and I was off and never saw her again.

So yeah, that happened. 

The other experience I want to share, is an experience which is how I started this blog.   Several  years ago I had a bout with burnout.  I was doing the bare minimum,  insulin and a few bg checks a day.  The rest was all guess work.  I had an appointment with my CDE at Joslin and I was very tempted to cancel it as I didn't want to get lectured.  Instead, I walked in with my head held high and said "I have gotten off track, I don't have much to show you, help me come up with a plan to get back."  I am pretty sure I shocked her, but I laid it out on the table, took ownership of it and the rest was history.  Well, the rest was every other week visits to check in, fine tune things, and I've been on track since.  That appointment was one of the best I ever had, and it did feel like what I imagine a confessional would be like (I'm Jewish, and we have a lot of guilt, but no confessionals).  

Diabetes Blog Week Day 2: The Cost of a Chronic Illness

Diabetes Blog Week Day 2:Today’s prompt Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)

I've never calculated exact costs per year that I've spent on diabetes care. I knew roughly how much I spent on prescriptions so that I could try to calculate flexible spending correctly.  A bit of denial here as to how expensive things really are.   

Between co-pays, deductibles, out of my paycheck costs every 2 weeks for coverage*, is by best educated guess close to $20,000 a year.  *health insurance for 2 people was roughly $530/month. 

I am thankful that I had good private health insurance through my place of employment, though I'm realizing now how pricy it was.  Still less than if I had to pay all out of pocket if  I didn't have any insurance.  This is what boggles my mind this week - how the price of the same medication, for the same dose can vary greatly between plan.  I do understand, sort of, that some of that is based on what the companies all negotiate, but it varies greatly, and you have no real insight into what things really cost until your plan starts.  I know ahead of time what average co-pays are.  But that's where things start to get tricky, and confusing, and gives me a headache.  It's also not like you have a choice between 2-3 PPO's or HMO's at work and can investigate and find the one that works best for your needs.  You really don't have much control.  

I'll  say it again, you  really don't have much control. 

To highlight this point, I recently switched health insurance due to loss of employment, and switching to my husband's plan.   The table below compares just 2 medications, and average appointment costs per year:

I know, right? $900 difference for just 2 mediations.

Costs of things, and insurance and pharmacy benefit and how things are negotiated are above my pay grade.  I guess I sort of wish there was some sort of standard, and that overall the costs of things people with diabetes NEED to live, like insulin, were more regulated and less expensive.   And yes, I know that as a whole things rarely get less expensive. 

Monday, May 15, 2017

DIabetes Blog Week Day 1: Diabetes and The Unexpected

Today is the first day of Diabetes Blog week, and my first time participating.  I haven't blogged on any regular basis so this will be a welcomed challenge.

Today’s prompt: Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?
When I think about the unexpected with diabetes, I feel like I can quickly tick off a ton of examples of how my diabetes had a mind of her own and did what she wanted, despite my best efforts and bringing every trick in my diabetes management toolbox, but still wasn't successful in taming the beast.

But I'd rather focus on the unexpected positives that it has brought me.

Sense of Purpose:
I was diagnosed with diabetes at the age of 2, and was fortunate to have gone to diabetes camp, Camp Nejeda.  As an adult, I have come to realize that there's not a lot of local support for adults with diabetes.  My mission of correcting this started about 6 years ago, with many false starts.  Over the last two years I have partnered with my local American Diabetes Association, and Camp Nejeda to create events/programs for this demographic.  My purpose, or mission is to expand these beyond Massachusetts and New Jersey. It's hard work, but I love it and can't wait to see where it goes.

Sense of Belonging
I feel like I always walked to the beat of a different drummer.  I have never been sure if it's because of my diabetes and knowing what I need to do and putting that first, or just how I'm wired.  It wasn't until I met other people with diabetes that I felt an instant connection with.  The people I met when I was 12 at diabetes camp are still some of my closest friends even though we don't get to see each other that often  The PWD  (people/persons with diabetes) that I have met as an adult, in person and online, I've had that same instant connection with, and I love it  The power of "me too" isn't to be taken lightly.

Sense of Being Supported
The DOC (diabetes online community) while we have greatly varying opinions on things, I know will have my back when I need them.  Friends and family are important to my mental and physical well being, but being able to share, vent, commiserate (what happened to that positiveness??) with is what often helps me the most.  Being able to message a friend stating "Ugh, BG dropped from 300 to 90 and I feel like crap" and they know exactly how you feel, is huge.  *Not to imply people without diabetes can't be supportive, they can. It's just different.*

So, while there are many things that stink about having diabetes, these unexpected positive things have been great.   There are so many great people that I've met, that if not for diabetes would never have crossed paths with.

Sunday, May 14, 2017

When life hands you new health insurance, micromanage!

Changing health insurance and or pharmacy benefit manager can be easy, or it can be a tangled web of countless hours trying to get the right information. Rarely is it anything in between.

Having recently gone through this after being laid off from a job I've had for a while (if you know anyone who is hiring, let me know), I'll share with you how I managed to keep my wits about me, despite many hours of phone calls and wrong information at almost each step along the way.

Know what you need:
I may not know where my keys are half the time, and my desk is always a mess, but I am quite methodical when it comes to many things, especially getting what I need to manage my diabetes. 

I recommend starting by compiling a list of all of the medications and other related durable medical items you need.

  • The pharmacy list should contain doses and quantity of medication needed.
  • The durable medical (insulin pump supplies, CGM,etc) should include the manufacturer item number if you have it, this can help eliminate wrong orders. 
  • Not only know what you need, know how soon you need it so you can escalate if need be.

Expect the unexpected:
This advice often drives me nuts, but it's true.  The things I thought would be an issue like CGM coverage weren't. The things I thought would be a non-issue, like approval for my strips with a prior authorization, have turned out to be a major pain in the neck.

Follow up, keep an eye on progress if you can through pharmacy websites.  Check on everything, and inquire as you need.   

I learned today that despite asking my doctor's office 3x in email for Humalog insulin, they       submitted the prescription for Novolog.  I can use either, but this insurance's preferred insulin is Humalog. 

I also learned today that a prior authorization for my strips was submitted, but denied.  They told me that it would be approved if the meter I use is the only one my insulin pump communicates with, which is my situation.  I have no idea now what was submitted in the PA, but now that has to be followed up on.

Take notes:
I sometimes have trouble with this, and if you end up making a lot of calls and getting lots of information, most of which is wrong, it's helpful to try and plot it out. Who said what and when can be helpful, especially if you have to escalate.

Insulin pump supply saga...
I started the process by calling Cigna to find out what they cover, and how to obtain my insulin pump supplies and CGM.  I was happy to learn that it was all covered.  They said to call CareCentrix to order my durable medical.  Simple, right?  Ah, no.  If only.

  • I called CareCentrix to start the process, but they instructed me to ask my doctor for a prescription for what I needed.  I questioned this as usually the third party submits the order, dr. fills it in and off it goes.  I called 2x to confirm this and each time received the same terse answer.  
  • I called the doctor's office  and explained what was needed, and they never heard this so they kindly offered to call CareCentrix.
  • My doctor's office called back a few minutes later and  said that CareCentrix told them that I should call Apria or McKesson, 3rd party distributors. The doctor's office suggested I called Apira as said they currently work with them, and not McKesson. 
  • I called Apira, and to no surprise,  said they are not contracted to work with Cigna and they can't help.
  • I called CareCentrix again, and  pleaded to the woman on the phone to help me. I explained the situation,  and pleaded with her to help me out.  With a few short keyboard strokes she told me that Medtronic is a preferred vendor and to call them.  She explained that CareCentirx is sort of a clearing house for the insurance company, they just confirm benefits.  
  • I called Medtronic and within a few minutes I was set.  The person on the phone told me they have a dedicated team that works with Cinga, and I was set.
  • I call my doctor's office back a few days later to make sure they got what they needed from Medtronic, and to no surprise nothing was sent.
  • Another call placed to Medtronic, and it turns out there was a  valid prescription for what I needed. I asked the person to double check, as that's not what I was told on my prior call.
A few days later I received a call from Medtronic, and received an email that my pump supplies are on the way but my CGM sensors would be a few weeks.  I have to look into that again this coming week. Despite being the queen of follow up, there's only so much even I can take.

Long story short - micromanage,take notes, micromanage, and be sure you get what you need when you need it.  In these situations don't be afraid of being assertive and escalating!

Monday, February 27, 2017

Favorite Diabetes Things

A few of my favorite (diabetes) things:
There are many products on the market targeted specifically for people with diabetes.
Below are some of my favorite items I've come across over the years and use on a regular basis.  

AccuCheck FastClixNever in a million years would I have expected myself to list a lancing device as one of my favorite diabetes related things, but I do love it!  The FastClix features a drum containing 6 pre-loaded lancets, making it easy and hassle free to change lancet after each use.  Sharp lancet = less pain, less callouses. 

Gold Bond Ultimate Diabetics Dry Skin Relief
"Diabetics are prone to dry skin"  I'm not sure if that's medically accurate but I tried this product a few weeks ago and love it.  It absorbs quickly, isn't greasy and lasts for a few hours.  All things I want in hand lotion!

I use my Diabetic SpiBlet for all of my workouts at the gym. Zumba, weight training, and everything in between.  With my insulin pump in the SpiBelt I don't worry about it falling and getting damaged.  It's also easy to move the belt around during my workout if I need to move it based on what I'm doing.  

PumpPeelz are decorations for your insulin pump, CGM and blood glucose meter, or as they say "Decorating Diabetes."  I have them on my meter, and my insulin pump.  Pictured here are my Medtronic Diabetes 630G insulin pump and Counter 2.4 meter, both wearing Pump Peelz. 

Glucose tables are another one of those things I never thought I'd add to a list of favorite things, but these are better than any others I've tired. - and I've tried a lot including those orange white tabs from BD back in the 90s.These are all natural, and not as chalky as others on the market, and when you open the bottle there's no puff of powder!  
My favorite are the wild berry.  

*I purchased all of these items on my own, there is no sponsorship involved with this post.  

Wednesday, February 1, 2017

I Wasn't Low Last Night - it was the cat

I love my tabby cat, Shelby. But she thinks night time is play time.

Shelby jumps on and off me all night.  She knocks things off the night table, and she also rubs the corner of the night table.  All.  Night.  But I wouldn't have it any other way even though I'm tired most days.

My husband is on juice box duty over night.  Not that I can't get them myself, but I feel better nudging him and asking for one, so he has an awareness that I'm low.

Last night Shelby was extra active in her pursuit of knocking everything over.  At one point I said, a bit too loudly, "Shelby, stop!!"  and within seconds my husband gave me a juice box.  Or rather, placed it on my back.  At some point I realized it was there and put it aside.

This morning he asked if I was ok, after the overnight low (sometimes my blood sugar is higher in the morning after an overnight low), and I said I wasn't low.
C: "Didn't  I give you a juice box?"
Me: "Yes, but I wasn't low. I was yelling at Shelby."
C: "Oh, that is why you didn't immediately take it."
C:  "Maybe "Shelby stop" sounds a lot like "I need a juice box?"

  Did I mentioned this was a WhatsApp chat, which made it even funnier, at least to us.

Tuesday, January 31, 2017

Is Diabetes a Scapegoat?

Some days I want to scream "not everything I'm feeling is related to diabetes!!!" 
 and before you ask, no, my blood sugar isn't low 

Does diabetes impact how I feel? 

Does diabetes impact my moods?

Does every headache have to mean low or high blood sugar?

Does being very thirsty mean I have high blood sugar?

This is along the sames lines as doctors saying "diabetics are prone to..."  when they have no explanation for why you are sick.  

Are we giving diabetes too much credit?

There are a lot of twists and turns and variables and can impact just about everything.  
But please, do not assume  if I'm hungry, grumpy, tired, agitated that "its the diabetes."  Sometimes it is, and sometimes it isn't.  I do check my blood sugar, and wear a CGM and 99% of the time in tune with what's going on.