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ADVOCATE: n. [ad-vuh-kit, -keyt]: a person who speaks or writes in support or defense of a person, cause, etc.

It’s really not very hard … and it’s really important. After all, who’s more important to your own life than you? It is survival.

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21th Annual Shooting Stars JDRF Walk to Cure Diabetes Sunday, October 23, 2016 in Newport Beach, CA at The Waffle House

For a contribution of $50 (or MORE!), walkers will receive a VERY COOL Shooting Stars Team T-Shirt while supplies last. Contact Joanne if you are interested in attending the event. joanne@TheSavvyDiabetic.com. To donate on-line, please go to: http://tinyurl.com/z5c2x8e.

Savvy DBlog Week: What Makes Me Crazy Mad

Today is the 4th day of Diabetes Blog Week 2017 … and the topic is What Brings Me Down.  Easy, huh?!?  Well, I’ve taken it a step further.

 

 

 

 

 

 

 WHAT MAKES ME CRAZY MAD?!@*^!
I thought long and hard about this.  

I’m mostly living in gratitude, being amused and happy most of the time.  I’d rather smile than frown.  I like to laugh and giggle.  That’s just me.  I find the world fascinating and curious. I love the word JOYFUL!

I can, however, tip over.  I often see it coming. I’ll do my best to describe it as I’m sure you will UNDERSTAND!

I work very hard to manage my health and be mindful and live well.  I try to help others.  BUT when I encounter barriers to getting what I need for my health, I get MAD.  For example:

Prior authorizations!  My doctor chooses a course of treatment and insurance wants more documentation and precious doctor time.  I trust my doctor more than I trust a pharmacy rep!
Miscommunication between insurance and my doctor’s office.  Orders and rx’s get faxed … BUT no one seems to have received it!
It takes an hour to to reach a human being at a device company, medical supply company or insurance company, only to find out that you need another prior auth.
Mostly, TIME!  It already takes several hour   s/day to manage diabetes:
calculating dosages
changing infusion sites or taking injections     
testing blood sugar and doing calibrations
chasing high blood sugars
chasing low blood sugars
ordering and refilling prescriptions
going to healthcare providers and local pharmacies
and MORE! 

You know!  And I’m okay with that as I feel grateful that I CAN go to the doctor and I CAN get […]

Savvy D-Blog Week 2017: You’re the Same as Everyone Else

The Wednesday topic for D-Blog Week 2017 is “The Blame Game.”  As I think back over 52 years of D living, I’m recalling the times when someone (on my healthcare team or family or friends) said or did something that felt blaming or hurtful.  Not too many times, actually … and I mostly look back and laugh.

I’m going all the way back to when I was newly diagnosed and seeing one of the top endos in New York City at that time.  Dr. D. had written lots of book and seemed larger than life.  But he had this awful, shrill nurse who spoke loudly and with a sharp German accent.  Just hearing her voice across the office felt like fingernails on a chalk board. 

On every visit, she would call my name and say (shriek), “Joanne, COME, let me STICK YOU!”  I was 11 and I got upset every time. 

 

 

In retrospect, I do not think she meant harm. But it always strike me very harshly. And I never said anything. Sometimes I cried.

 

 

 

 

If it were today, I probably would:

Ask her politely to use gentler words that didn’t get my heart started. I’d try to explain how it sounds to a child with diabetes.
If she didn’t show concern or make changes, I would probably discuss her behavior and my reaction with the endo. Most likely, he would have laughed it off.
THEN, if nothing changed, I would probably change endos! No one deserves agitation and disregard  at a healthcare visit.

 

Savvy D-Blog Week 2017: It’s ONLY Money!

Today’s blog topic is: The Cost of a Chronic Illness.  Woooo, there’s a lot of room for writing here, including insurance, Medicare, coverage, cost of our care, accessibility and much, much more! 

I’m talking today about the cost of being an Early Adopter!  I simply can’t help it.  I admit it! When something comes out and looks fairly safe, I WANT IT!  I don’t want to wait (hence, #WeAreNotWaiting)!

I had one of the very first blood glucose meters in the early 1970’s called the Ames EyeTone Reflectance Meter.  It was a clunky, plug-in device, not terribly accurate … and cost about $450. But it was better than testing urine with Clinitest!

When I first heard of CGM, I wanted to start with Abbott Navigator … but Dexcom beat them to market … so I jumped in with the very first CGM, the Dexcom STS … it was NOT very accurate but I knew it was going in the right direction.  When Navigator came to market, I switched over, until Abbott pulled it off the market … then right back to Dexcom, by then, Dex3. 

I heard rumblings from the NightScout group … bought all the pieces for the “rig” and jumped in there too, using a Pebble watch. Loved it.

Cautiously, I decided to try Looping … and am learning every day and am amazed at the smoothness of my CGM data, especially throughout the night.

FIASP!  Approved in EU and now in Canada, it won’t be approved by the FDA until the end of 2017.  So I want it!  Others in the D community are trying it … and even Loopers are figuring out the algorithm using it. 

Do you know what it is?  Fiasp (Faster-Acting Insulin Aspart), made […]

Savvy D-Blog Week 2017: Diabetes and The Unexpected, LOOPing

So happy to be back blogging for www.BitterSweetDiabetes.com’s annual Diabetes Blog Week, hosted by Karen Graffeo.  Some great topics coming your way this week!

Today’s topic is Diabetes and The Unexpected.  And my latest, of a lifetime of “Unexpected’s” occurred last week, as I’m learning about Looping with RileyLink. 

I noticed that, while running in Closed Loop mode, sometimes after an infusion site change, my Loop started a 0% temp bolus rate during a rising blood sugar.  It made no sense.  If I turned of the temp rate, it would turn it back on. 

Was there a demon living inside my RileyLink motherboard? 

NO!  I finally posted the question on the Facebook page, Looped … and got several very excellent answers, including how to resync the clocks on my phone and my pump.  But the big answer:  When I change my infusion site but use the same reservoir, as I fill the tubing and the cannula, Loop sees that as IOB.  Suddenly I’m showing 11 units of IOB, so OF COURSE, it should shut off!  And believe it or not, from the amazing folks on Looped, there is a definite work-around by deleting history so the Loop doesn’t get confused. 

Ta-Da!  Done … 2 problems solved!  Loving my RileyLink more and more every day, as I experience more “Unexpected’s”!

Savvy Update 5.14.2017: Fiasp

Happy Mothers’ Day to all of you who are moms, aunts, grandmothers, people with moms, pet moms!  Here’s a special Mothers’ Day edition about Fiasp!

Novo Nordisk’s Ultra-Fast Rapid-Acting Insulin Fiasp Approved in Europe and Canada, announced on Nasdaq GlobeNewswire, 10 January 2017.  Why am I just writing about this today?  Well, it’s available in Canada and reasonable prices … and coming to the US hopefully by end of 2017!  And from what I hear, it works very well!  Read the release: Fiasp® (fast-acting insulin aspart) approved in Europe
Here are some highlights by Mike Hoskins from DiabetesMine:

FIASP is not the most creative branding (sounds like a variety of wasps?), but the name certainly fits. Whether it will carry a new brand name here States when launched remains TBD.
Internationally, FIASP is available by vial, Penfill, and FlexTouch insulin pen. In Europe it’s approved for insulin pumps but not in Canada. Here in the U.S., Novo tells us FIASP will only be available in pen form.
While Novo officially still recommends taking FIASP before the meal, overall they’re touting more flexible dosing, mentioning “earlier, greater and faster absorption, thereby providing earlier insulin action.”
It’s twice as fast as regular NovoLog or NovoRapid. Getting into the science, that’s because two “excipients” have been added to FIASP’s formulation — Vitamin B3 (niacinamide) to increase the speed of absorption, and a naturally occurring Amino Acid (L-Arginine) for stability.
Data also show that patients lowered their A1C levels.

Read LOTS more including reviews from patients: The Scoop on Novo’s New Faster-Acting FIASP Insulin

Savvy Update 5.13.2017 ~ sugarBEAT CGM, Insulin Prices, Cured in Mice, Glycemic Variability OK?

Lots of news in the diabetes world … here are some interesting ones!

sugarBEAT by Nemaura, is a new CGM is approved and will be available for use in Europe by the end of 2017, according to a report on ASweetLife.com, 4/2017.
The sugarBEAT CGM uses a patch without needles. More specifically, according to a news release from the company, “the core platform diagnostic technology is based on micro-electro-mechanical-systems (MEMS) designed to non-invasively draw out glucose through the skin to a reservoir within a skin-patch, where it is measured by a sensor. The data is then sent by bluetooth to a mobile phone application where it is displayed in numerical or graphical form.”
The patch is applied after a finger stick blood test to calibrate the path. It then takes up to 30 minutes to warm up before it starts delivering glucose readings once every five minutes to an app.
The patch can be worn for up to 24 hours at a time but users have the flexibility to wear it for only a few hours or, “on an ad hoc basis,” according to Nemaura.
Read more: Needle-free Patch CGM to Launch in Europe
 
About Insulin!
Eli Lilly raised prices on 9 drugs last week, including Humalog and Humulin!
Pretty outrageous, coming on the heels of an Access Workshop, regarding insulin affodability & access.          Read Mike Hoskins article on DiabetesMine, 12 May 2017:  So, I am MAD …
Nevada Lawmaker Strips Refund Provision from Insulin Bill, as reported by AP, 2 May 2017. 
A Nevada state lawmaker and backers of a proposal to control insulin prices on Tuesday withdrew a key provision of the bill that would have made the state the first in the U.S. to mandate drugmakers refund diabetics or their insurance […]

Meet Cassidy Robinson, T1 and Biking Across the US!

Excerpt from my interview with Cassidy Robinson, published on DiabetesMine, 14 April 2017

I met Cassidy Robinson years ago at a JDRF Type One Summit on a beautiful Sunday morning in Orange County, CA. It was a morning filled with inspirational speakers and informational sessions… and then finally lunch! I ended up sitting next to this 20-something T1 and we struck up a conversation. She was diagnosed at age 2 but didn’t really start taking her diabetes management seriously until her early 20s, she told me. She got connected to a local support group and the Diabetes Online Community, and the rest is history!

Cassidy and I stayed in touch. She was born, raised and living/working in Southern California, but the next thing I knew, she had upped and moved to Manhattan! I’m a native New Yorker and was so excited for her to experience NY and the East Coast.

When I had an opportunity for our local D-support group to participate in a pilot program for online counseling to discuss resiliency, Cassidy jumped right in, even though it meant going online every two weeks at 9pm NY time (yeah, she’s young, it really wasn’t keeping her up late!).

And then, the next thing I hear: Cassidy is one of 22 T1 bike riders participating this summer in the Beyond Type 1 Bike Beyond program. This is a ride from New York City all the way to San Francisco — really, about 4,300 miles over the span of 70 days (60 riding and 10 days of events and PR).

Read more:  Biking Across America with Type 1 Diabetes

 

 

 

 

 

 

 

And for MORE Cassidy … she was recently a T1 CoHost on The Bonnier Sher UBN Internet Radio/TV weekly broadcast and she […]

Savvy Apps Update 5/11/2017

The hot buzz these days is all about health apps.  Some track exercise. Some act as insulin bolus calculators. Others are log books and reminder alarms … and more.  Here’s just an update on the app market.

 

Fitness Trackers … Are They Accurate? as reported on MedPage Today, 1 May 2017.  A study conducted by Cadmus-Bertram test 4 popular trackers on the market vs. the gold standard ECG at rest and at 65% of max heart rate during exercise on the treadmill.
The trackers in this study:

Fitbit Surge
Basis Peak
Fitbit Charge
Mio Fuse

The results matched closely with the results from a Cleveland Clinic study conducted last year.  The ECG results and repeatability coefficient compared well at rest for some devices, such as the Fitbit Surge. However, the accuracy and precision of the measurements seem to vary a lot during exercise.
While these devices may be “close enough” for assessing daily activity and exercise, more study is needed to use the data clinically.
Read more: iMedicalApps: Are Fitness Trackers Accurate?
 

Glooko & Fit4D Combine Digital Diabetes Management, Human Coaching, reported on FierceBiotech, 27 April 2017. 
Glooko and Fit4D, a diabetes-focused health coaching service, are combining their offerings to provide patients with an “end-to-end” solution for diabetes management.
Under the partnership, the duo will combine Glooko’s digital platform, which integrates data from an array of diabetes devices, and Fit4D’s technology that connects patients to a team of certified diabetes educators—including clinicians and dietitians—that coach individuals who are learning to manage their disease. The combined platform will result in one of the most “scaleable, integrated diabetes management offerings,” the companies said in a statement.
Read more: Glooko, Fit4D combine digital diabetes management, human coaching
 

FDA Clears Apps to Optimize Basal Insulin Dosing, published on […]

CGM & Liberty Medical: Good News and VERY Bad News

First the good news!  I GOT MY ORDER!!!  Indeed, ONE transmitter, ONE receiver (black as apparently once you are on Medicare, you go colorblind), 3 boxes of sensors!  It’s so beautiful I am leaving it in the box for a few more days, just to marvel at it.

NOW, THE BAD NEWS:  as reported by Nolan, referring to several TuDiabetes messages:

According to Jimbo31 and Jason99:

“I received a call this afternoon from the Dexcom Sales Executive Manager … Late Thursday, Liberty Medical informed Dexcom Management that they will no longer process orders for the G5 because of the complex Medicare requirements, and they were overwhelmed by the number of of medicare patients applying for the G5 CGM.

I informed the Dexcom Sales Manager that I wanted him to contact Liberty Medical on Monday to have them return ALL our paperwork that was submitted to them and return it to us so I can go out, and buy the G5 device on my own from another supplier since Dexcom will not sell them directly to patients. Dexcom will sell you a G4, but Medicare will NOT reimburse for that model. Dexcom is now scrambling and searching for new suppliers willing to take this task on, and has no idea how long it will take to get a new supplier(s) in place.

REALLY?!?!?!?  What next? Do we all start calling Dexcom?  Or Medicare/CMS?!

What Would YOU do? Your Feedback is NEEDED!

OK, customer service is part of life, of business, of healthcare, of just about everything.  While some organizations make it a priority to deliver the best customer service experiences possible, others not so much. 

Then there is the occasional clinker – a rep who is just blatantly rude or offensive or shows, by attitude and tone of voice, that he/she really just doesn’t care.

We all deal with this and usually, just manage or get another rep for help. 

I had an experience with a diabetes device company’s customer service (CS) department this week that stunned me … actually took my breath away.  I won’t mention the company (for ease of this blog, I’ll call it M) but I’m on the Loop so you can figure it out.  I had bought my M pump used from someone who no longer wanted to use a pump.  It was out of warranty and was barely used and it works just fine. 

I then tried to buy supplies from M, through their order line.  I received a call that they can’t fill the order until the pump is registered … I was transferred to CS … so far, so good.

I gave the rep the pump serial number and he informed me that the pump was not registered.  Well, duh, that’s why I was talking to him.  I was polite and explained that I had gotten the pump used and just wanted to buy supplies.  That’s when the tirade started.  “Where did you get this? Did you steal the pump? Are you in the black market?”  He was getting worked up. 

I said that I thought his tone of voice was getting very accusatory.  He said, “Yes, it is!  You can’t just have […]