Candy Hearts Blog

It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

2015 DBlog Week: Keep it to Yourself

While I’m pretty transparent about our life, there are some things I just don’t feel comfortable talking about here. To be honest, I don’t actually know what all of them are, because I’m pretty sure many of them haven’t even happened yet.

That being said, I just want you to know I understand.

If you’ve ever had to make the choice between a tank of gas and a test strip copay, I understand.

If you’ve ever sat up in the middle of the night, fretting over a glucose level while eating through an entire shelf in your pantry, I understand.

If you’ve ever cried for no reason, but for a million reasons at the same time, I understand.

If you’ve ever stopped believing in your dreams, I understand.

If you’ve discovered new ones you never wanted to find, I understand.

If you’ve watched life wander by, and wondered if you’d ever find joy in it again, I understand.

If you’ve ever looked in the mirror, and stared confused at the stranger in front of you, I understand.

If you’ve ever felt alone in crowded spaces…or crowded in quiet places, I understand.

If you’ve ever been stuck at a crossroads, and opted to remain stagnant instead, I understand.

If you’ve ever been terrified to move, to breathe, or to speak for fear your world would crash, I understand.

I show you the stuff I want you to see, but there’s a story behind the silence.

Thank you for understanding.

This post is part of the 6th Annual Diabetes Blog Week. To read more Keep it to Yourself stories, click HERE!

Dear New Friend (The one whose child was just diagnosed with Type 1 Diabetes),

Your sweet child (no pun intended) was just diagnosed with type 1 diabetes. I know you woke up today in the haze of this whirlwind, and I realize you may wonder if this is actually reality, or some weird dream-like state of consciousness you never knew existed. Whether you are familiar with what type 1 diabetes is or not, you are probably in shock and doing your best to take in the enormity of the situation without panicking.

In the coming hours, days, weeks, and months you will have information thrown at you from a million directions. When you turn to the internet, it’s possible you’ll end up tripping and falling down a rabbit hole you never saw coming. In this age of technology, there are a million people with a million opinions waiting behind every click. Unfortunately, not all of the information at your fingertips will be helpful — or accurate, for that matter.

2015 marks the 10th year since my daughter’s Type 1 diagnosis. She was diagnosed about three weeks after her 2nd birthday, and we’ve stumbled around this block a time or two. From being told to “suck it up” to a suggestion to try feeding her camel’s milk (because I always wanted a pet camel, right?), I’ve heard a lot of stuff on this journey.

With that in mind, I wanted to give you 10 useful tips (in no particular order) to help you figure out how to plant your feet in the right direction:

BUT FIRST!!!!! This is a long post. I mean…it’s been TEN years for us…so TEN tips adds up. I just want to say that if you don’t feel ready to read this right now, that’s okay. Type 1 diabetes is here. It isn’t going away. You can always come back to read this another day.

1) You will, no doubt, deal with a range of emotions as you go through the motions of adjustment…and beyond. I want you to know that it’s okay if you aren’t feeling “happy happy joy joy” every minute. It’s okay to be angry. It’s okay to cry. It’s okay feel frustration over the financial toll, sleep deprivation, and stressful impact type 1 diabetes will have on your family. Pretending any of that doesn’t exist won’t make it go away. Acknowledging the challenges doesn’t mean diabetes “wins”. It means you’re facing reality.

Whenever possible, face it – don’t fake it. Your emotions are validated. Justified. Heard. But you are also the parent, and that means you won’t allow life to fall apart either. You’ll do what needs to be done — even when you’re feeling down — because that’s how you roll.

{Further reading: I wrote this post detailing my emotional journey when we got to the 5 year mark — now we’re standing at the brink of 10 years, and not much has changed.}

2) There isn’t a magic cure. Well-meaning people will offer up all kinds of solutions to try to help your child. I say “well-meaning”, because I’d like to think they aren’t intentionally suggesting you try things that could kill your child. I won’t link to some of the outrageous propaganda here (because I don’t want to give them click stats, and also because I don’t want to send you down the wrong path), but cinnamon won’t cure your child…neither will any special combination of foods…or eliminating a food group altogether…or trying an exotic essential oil…or giving your child a variety of supplements…or trying a specialized exercise program.

Insulin is NOT your child’s enemy. Insulin is a hormone essential for life-sustaining function. Without it, people die. It is the ONLY treatment available for the management of type 1 diabetes. Remember, prior to the discovery of insulin, T1D was a universally fatal disease. No one survived…despite trying every herb, every oil, every diet, every exercise, every everything…everyone died. No one was spared.

Insulin saved your child’s life too.

{Sidenote: You’re child may enter something called a “honeymoon phase” after being diagnosed. For awhile, it might seem like diabetes has disappeared, but it hasn’t. I’m sorry.}

3) There will be no shortage of advice. Once you begin to integrate online, you will find there are as many opinions about every detail as there are details. Remember when you were a new mommy and got sucked into the vaccine debate? Or the breastfeeding debate? Or the cloth vs disposable diaper debate?

Yeah. Like that.

Do you change your lancet with every poke? Did you check ketones with every BG over 250? DO YOU — USE AN ALCOHOL WIPE FOR EVERY INJECTION????? The list is long, and the commentary is longer.

Here’s a tip: Don’t pay attention to any all of it. Do what works for your kid, and let another mother do what works for hers. Take what you find helpful, and leave the rest behind. That’s all there is to it. Pick and choose what (and who) you want to spend your energy on.

Along those lines, be aware that sometimes people will interject themselves into your crisis. And, make no mistake, right now — in the aftermath of your child’s diagnosis — this is a time of crisis as you adapt your new normal. There are some people who are just constantly in a state of drama. They come on strong, act like they know everything — been there/done that, and monopolize your time with their theatrics.  They’ll constantly compare your situation to theirs. They turn every conversation around to be about them, and they never stop to listen. Every day is a new dilemma for many of them, and you’ll grow tired of listening to all of their struggles while trying to balance your own.

You don’t have to make time for all that right now — or ever, for that matter. It’s okay to avoid them. Unfollow. Defriend. Block. Whatever it takes.

Catch your breath.

4) Ask for help. You are going to need someone who can check your child’s BG, count carbs, and help give insulin. You will need someone who can watch your child for an hour or two at some point in time. I know it might feel impossible right now, but be honest when people ask you what you need.

Sure you can always use help with dinners, and errands, and all that good stuff…but for the long haul, you will need someone to be willing to step up in this area. Tell your friends and family you need them to learn everything they can so they can help you take care of your child.

Not everyone will be willing, but someone probably will. You might be surprised who it is.

5) Technology is out there.  When it comes to diabetes technology, there’s a lot of information to absorb. From glucometers to insulin pumps to continuous glucose monitors (CGMs), there’s plenty to learn. While I feel inclined to tell you to cross those bridges when you’re ready, I also feel obligated to let you know that technology has, literally, revolutionized this journey for us.

#1 – The precise micro-dosing offered by the insulin pump helped us stop the horrible low blood sugars that were causing my little 2-year-old daughter to pass out repeatedly. {She wears the Animas PingHERE’S WHY, if you’re interested.}

#2 – Yes, she did begin carrying a cell phone at 9 years old. It was a game changer, and my only regret is we didn’t get one for her sooner. Putting a cell phone in her hand gave us a direct connection for the times we couldn’t be together…like, for example, when she was Toto in the school play and stayed after school twice a week for most of the school year; and that time she went to her 1st sleepover (which didn’t go very well, btw); and all the weekend services we’ve spent apart during church worship. These days, she goes to the park with her pals, rides her bike around the neighborhood, and calls me anytime she’s dealing with a BG issue she feels like she needs help with. I love that we have cell phone technology in this day and age of parenting — and diabetes management.

#3 – Finally, the peace of mind offered by her Dexcom Continuous Glucose Monitor (CGM) is second to none. Dexcom measures the interstitial glucose levels using a very thin sensor placed just beneath the skin. It displays a glucose reading every 5 minutes, along with an arrow to indicate which direction the glucose level is moving. We’ve found it to be incredibly accurate, and would consider it one of the most important tools in our tool box.

Currently, I’m able to remotely monitor my daughter’s Dexcom data using Nightscout. This means I can see her numbers on my laptop, smartphone, and even on my Pebble watch (using an Android app) no matter how far apart we are! Ten years ago, the idea of being able to remotely monitor my daughter’s glucose levels would have been a dream come true…and now here we are. {Nightscout is actually a bit more complicated to set up than I’m making it sound here, but it’s pretty amazing and worth the investment of time.}

If you are a family of iPhone users, the Dexcom SHARE might be a great option for you. There isn’t as much set up required as Nightscout, and you can still remotely monitor your child’s glucose levels. Unfortunately, Dexcom didn’t make their remote monitoring software available to Android users (something I have a pretty big problem with — a soapbox I’ll rant on another day), so I can’t give you a firsthand account of the experience, but I think it’s going pretty well for iPhone users who have been able to use it.

Finally, have hope in the technology of tomorrow. In the summer of 2014, my daughter wore a closed-loop artificial pancreas called the Bionic Pancreas. She wore it for five days as part of a clinical trial, and it completely controlled her glucose levels — like, she didn’t count carbs, she didn’t correct highs, she didn’t deal with lows. It. did. eve.ry.thing. I’m not even making this up, people. I know it sounds very futuristic-scifi-the-stuff-that-movies-are-made-of…but it was real. She really wore it. You can read more about her experience with the Bionic Pancreas HERE.

Oh, and Encapsulation. You need to be excited about that too…it’s a little implanted device that would eliminate the need for insulin for up to 24 months.

Yeah. Read that again: “eliminate the need for insulin for up to 24 months”.

Good stuff is coming.

Get on board with technology.

6) Get involved. You cannot take a passive role in your child’s future. You have a very finite amount of time to shape tomorrow, thereby ultimately making a long-term impact on your child’s destiny.

One day your child will grow up to become an adult with type 1 diabetes. Their ability to carry health insurance, avoid discrimination in the workplace, access technology (as well as what that technology will be), and the ability live as normal a life for as long as possible will come about, because of  advocacy efforts that are happening TODAY.

There are organizations working very hard to secure a better future for your child, but it’s not just about tomorrow. Children today are able to access insulin pumps and CGMs because of advocacy organizations who have worked hard with the FDA and insurance organizations. Our children can go to school with protection under the American with Disabilities Act, complete with a 504 Plan (or IEP, depending on your child’s needs). Today’s children are benefiting because of yesterday’s hard work. It’s a circle effect.

You must become part of the momentum, because we need ALL HANDS ON DECK. Get involved. Start a walk team. Sign up to share your story with lawmakers. Offer to come to the office. DO SOMETHING…but whatever you do, don’t do nothing.



Here’s a great article that highlights some others.

7) There are no bad numbers.  There are a lot of numbers. Many days are like a roller coaster…up, down, up, down…but there are no “bad numbers”. There are high numbers. Low numbers. And target numbers.

Let’s say a BG of 439 pops up on the meter. What do you do?

Frown? Scowl? Grumble?

Does your child think you’re frowning, scowling, and grumbling at them? Are they now worried that they’ve disappointed their parent because of something they have absolutely no control over? Their body doesn’t make insulin. Regardless of whether that number is the result of forgetting to cover something or not calculating correctly, the fact remains that…well…they’re 439 because their body doesn’t make insulin.

Listen…the last thing you want is for your child to tie that number to their self-worth. It’s a number. It’s a piece of data — that’s all. 439 simply means your child needs insulin. Period.

Fix the number, then objectively try to figure where it came from. Don’t lash out. Don’t hurl accusations. Don’t place blame. Just work together to problem solve.

Each number — whether high, low, or target — is merely a point of data on a graph. There are no bad numbers — just data. Use the data to make decisions about what to do next, but do not use the data to place any sort of value on your child.

Your child is so much more than a number.

{By the same token, remember these numbers are not a measure of your parenting either. Data! That is all.}

8) Doctors often don’t get it. You will be surprised how many times you encounter a doctor (or other healthcare professional, nurses included) who will ask you if your child uses insulin. Um, yes. TYPE 1 DIABETES infers the use of insulin, but it’s just not that simple. They will insist your child needs nutritional counseling or start an exercise program to “control their diabetes”. They don’t get it. THEY JUST DON’T GET IT!!!!! And you can educate them until you’re blue in the face, but they will probably just argue with you.

Truthfully, I didn’t really get it either. I was a nurse for 10 years before my daughter was diagnosed, and nothing in nursing school prepared me for this. I was SHOCKED when I learned what this life would consist of. I’m embarrassed to admit this…but I said that…and this patient taught me so much.

I don’t know how to fix the problem at large, but felt you should know so you wouldn’t be caught off guard. Most healthcare professionals have no clue about T1D, so don’t let them start making decisions about your child’s insulin until you’re confident they know what they’re doing.

{Further reading: No one should die because they are misdiagnosed or not diagnosed in time.}

9) Get on a 1st name basis with your school nurse. And your school’s custodian. And the cafeteria workers. And the front office staff. And the crossing guard. And anyone else who is willing to look out for your child during the school day. Love these people. You are on the same team. It takes a village, and they will be there when you aren’t. Everyone matters.

10) Your child was diagnosed, but everyone in the family is living with type 1 diabetes. This is going to be life-changing for everyone. Siblings will go through adjustments. Marriages go through adjustments. Family routines go through adjustments. In some ways, a bomb has just been dropped in the middle of your living room.  In other ways, the ultimate team challenge has just been presented to your family.

Everyone’s experience counts. No one is less important, and there’s most certainly a job for everyone. Youngers can help keep track of juice boxes, and Olders can help learn how to give injections. From learning how to check glucose levels to learning how to count carbs to learning how to weigh and measure food, there’s something for everyone.

All of that being said, sometimes it won’t be so hunky dory. Sometimes siblings grow tired of the extra attention your child with diabetes (CWD) is getting. Sometimes your CWD may grow tired of it too.

After ten years, I wish I could end this post by telling you that it gets easier, but it doesn’t. Sometimes it feels like we’re living life one number at a time, just waiting for the next result so we can make a decision about what happens next.

The insurance hassles, prescription battles, and BG rollercoasters never seem far away. There’s always a challege lurking around the corner. Just when you think you’ve found the perfect insulin dosages, your child grows — or has a test — or exercises — or whatever. There are birthday parties, and sleepovers, and swimming pools, and bounce houses…and nothing is predictable.

It’s never easy…but you will look back and see how far you’ve come…at 2 weeks, then 4…then 3 months, 6…then before you know it, at 1 year, 5…10… You will stand amazed at what you, your child, and your family has overcome. You will look around, simultaneously shocked at how fast the time has flown, and how slow it has crept by at the same time.

No…it doesn’t get any easier.

YOU, my friend, get BETTER!

Animas: Our Pump Choice (Updated!)

The Animas Ping.


Here we are.

The end of 2014.

Which means we’re 4 years removed from the first time I wrote about why we’ve chosen the Animas Ping to keep the insulin flowing around here.

Sugar’s pump warranty expires this month – on December 27th, to be exact. As usual, this time always rolls around and I find myself sizing up all the pump options available.

Please Note: A lot has changed in the insulin pump industry in the past 4 years. I’m going to tell you why Animas is the right pump for us and the reasons we’ve ruled out other pumps. What’s important to me may not be important to you. Likewise, my reason for ruling out an option may seem ridiculous to you. In the end, we can only choose one. I have to rule them out somehow! I’m not here to list a comparison of every advantage and disadvantage of every pump on the market, but here’s a great overview and another great one if you’re looking for that.

**Animas — Winner Winner Chicken Dinner!  I’ll start with the obvious…

The Remote: Simply put – We love remote bolusing! I hate overnight corrections, but love that I can just push a few buttons and be done with it rather than having to dig out her pump to do it. I love sitting across the table at a restaurant, and zapping her with a pre-bolus while she’s still perusing the menu. I love that she can wear a dress and not have to worry about lifting her skirt to access the pump. I love that she can hang out with her pals at a party, doing whatever kids do, and I can bolus her from across the room without interrupting. I could paint a million pictures about why I love — and need — remote bolusing in my life. In fact, I love it so much that we haven’t been able to give up the remote in exchange for CGM integration now that the Animas Vibe is approved for kids.

The Pump Bolus: Yup. I love our remote (though I do feel it could use a makeover), but I love that we have the option to administer a bolus from her pump too. I can’t count the number of times the remote has accidentally been left at home, in a different bag, at school, at a friend’s house, etc, etc, etc. When you consider how long we’ve been using it, I suppose it really isn’t all THAT many times, but enough times to really appreciate the option of administering a bolus from the pump.

The Tubing: Yup. You heard that right. We *PREFER* having the pump – and the ability to perform all essential pump tasks – attached to her body.  Sugar has been pumping with tubing since she was 3 years old. It doesn’t get in her way…ever. Period. End of story. In eight years, the tubing has been the least of our concerns when managing type 1 diabetes. We also love that she can disconnect and reconnect easily whenever necessary.  Not to mention that she likes the camaraderie that comes with being spotted by (or when she spots) another pumper in the wild. At this phase in her life, she’s proud of her pump, and really doesn’t care who can see it – tubing and all.

0.025u Basal/0.05u Bolus: Using undiluted insulin, can you draw either of those doses up accurately in a syringe? No. You can’t. Even if you have a syringe with a half-unit marking, you’ll still be guessing. Over the years, we have come to depend on the precise micro-dosages that Animas offers for both basal settings and bolus delivery.

Insulin On Board (IOB): Keeping track of active insulin to avoid stacking is something I have always considered a key safety feature for any insulin pump. I refuse to attach my daughter to medical device that doesn’t keep track of the life-saving (and, potentially, life-threatening) hormone it is infusing into her body. Along those lines, I expect the pump which is infusing such an essential fluid to recognize when her BG is below target and adjust dosing to accommodate accordingly. Expect. Per-i-od. You’re automatically off the list if you don’t do both of these things.

Sites: Sugar uses the 6mm/23 inch tubing Insets. They’re easy to insert, easy to remove, and easy to disconnect in between. We rarely encounter a site issue. After 8 years, I have come to the conclusion that they work great for Sugar and any pump we use would have to be compatible with them. Because the Animas cartridge (which is super easy to fill without air bubbles, btw) has a luer lock, users have the ability to try sites from other companiesif they so desire. The tubing is not proprietary, and I really appreciate that. In the first 2 months of our pumping experience, we were trying to use a different infusion set and it was disastrous. We actually began using the Insets with a different pump…more on that later.

Waterproof: Sugar has been tubing on a lake, romping around waterparks, running through sprinklers, playing on splash pads, and caught in the rain with her pump on.  During the summer months, we usually disconnect the pump and store it in a cooler while at the pool, because her BG tends to drop during swimming. (There we go again with loving the ability to disconnect.) I keep it in a plastic bag and just toss it in with the drinks…there’s been a time or two that water has leaked into the bag.  Suffice to say that I was very glad her pump was waterproof during those times! (Sidenote: The Vibe offers waterproof CGM integration. Dude.  Like. That’s freaking awesome.)

There are a few more things we really like about Animas — like the fact that it uses a AA battery (preferably lithium, but a regular battery gets the job done too), and I can grab them while I’m at the grocery store. Or steal one from a TV remote in a pinch. Not that that has ever happened or anything — but those features are most important to us. So, let’s move on. Here are the reasons we ruled out the other options:

Asante Snap: Asante uses prefilled insulin cartridges to load the pump. While I think that’s pretty awesome, they don’t offer an Apidra cartridge and Sugar uses Apidra insulin.

Next.  {Asante has left the industry since I wrote this post.}

Insulet Omnipod:  The first thing you’ll notice about the pod is that it’s tubeless. That’s awesome…if you’re into that kind of thing. As noted above, we like having tubing, so there’s that. You can’t administer insulin from the pod itself, nor can you change settings, set temp basals, blah, blah, blah. If you misplace/forget/whatever the PDM, the basal rate will continue, so that’s good news. You won’t go into DKA, but you won’t eat without a shot either. Aside from those things, we prefer a smaller basal rate than the pod offers (0.05u) — and beyond that, the ability to program a temp basal for an even smaller amount. You can’t disconnect insulin delivery without removing the entire pod or change a pod for whatever reason without losing all the insulin it still holds inside.  You also have to change the pod when the pod decides. Sometimes Sugar’s sites slip into a 4th (or 5th) day…{don’t lecture me}…I don’t need the thing yelling at me because we’ve had such amazing numbers that I forgot about the site change until the pump reminds me that it’s out of insulin and needs to be refilled. The PDM remote often has to be directly next to the pod/practically touching the darn thing for successful insulin delivery (might as well just push the buttons on the pump, eh!?!), and static electricity interferes with pod function.

If all that weren’t enough reason for me, the Omnipod meter has a notorious reputation for inaccuracy. In fact, the integrated meter uses test strips that have been called into question for accuracy concerns since 2010. From late 2013 through early 2014, there was (finally) a big confused mess of a recall.  The strips were recalled because the Omnipod PDM was reading erroneously low glucose levels…unfortunately, the recall came too late for this young woman who died.

At any rate, as you can imagine, many users prefer to use a different meter…which means they lug around the PDM to operate the device and another meter to use for glucose testing. Blah.

The pod also involves more adhesive and more adhesive involves more potential for irritation, rashes, and skin breakdown. I’ve heard a plethora of stories about pods that malfunction (A LOT of stories about malfunctions, actually), pods that get knocked off, pods that leak, pods that just start screeching randomly at inconvenient times for no apparent reason…the pod just isn’t the right fit for us.


Roche Accu-check ComboI admit that I don’t know a lot about this pump. I do know that I’d have to use a specific meter to communicate with the pump in order to program a bolus, and there isn’t an option to manually enter the BG if I so desired. I’ve also heard both the set changes and bolus delivery rates take way.too.long. For now, that’s enough.


Tandem t:slim: I would say out of all the other options, this pump was probably the closest contender. Unfortunately, it doesn’t adjust insulin doses until the BG is under 70. Sugar’s target is 120. If she’s any number less than that, I want the pump to take it into consideration — along with IOB — and subtract insulin accordingly. Waiting until the BG is 70 just isn’t cool with me. You also can’t just deliver a straight-up bolus without associating it with a BG number or carb count…if I just programmed 1 unit for a cupcake and now she’s eating a second one, I just want to program 1 unit again. I don’t want to mess with the other stuff. There have been rumblings of concern about this pump administering incorrect basal delivery, and some folks feel the onscreen buttons are too small, causing frustration when it times out because your fat fingers didn’t seem to hit the right one after three tries. I’ve heard a couple complaints that it’s easy to accidentally enter a BG where you should be entering carbs — thereby potentially administering insulin for 500 carbs when you really just wanted a correction for a 500 BG. I guess there are also a zillion confirmation screens — that sounds as annoying to me as having to scroll up from 0.00u when programming a Ping bolus. I’m used to one annoyance, and don’t want to get used to a new one right now. Beyond those things, this post sums up a lot and I’ve heard a few other horror stories about using Apidra insulin in this pump. Not to mention concerns about (any) insulin overheating when charging this pump (it doesn’t use batteries). Then there’s that whole upgrade thing (or lack thereof) –> basically, Tandem refuses to upgrade current users as they develop and release new technology. When I talked to one rep, he described set changes as “I get it set up – go take a shower – then come back”, because, apparently, it takes a while to prime the tubing. Getting a complete set and site change done at 2 am in under 5 minutes with the Ping is frustrating enough. For now, my sanity couldn’t spend a second longer dealing with slow priming in the middle of the night — or any other time, for that matter.


Medtronic 530G with Enlite: Lucky for them, Medtronic ruled themselves out as a contender in our home when they sued Cozmo out of business in 2009 over a minute detail they considered to be a patent infringement. I mentioned briefly somewhere up there that Sugar started pumping with a different pump originally. It was a pump we really liked. Sadly, dealing with the mounting legal fees imposed by Medtronic, combined with the flailing economy was too much to recover from. Cozmo employees lost their jobs, and Cozmo pumpers everywhere were devastated — including our family. In true bully form, they’ve sued both Insulet and Animas over “patent infringements” in the time since as well. Interestingly, however, Medtronic had no problem infringing on patents involving transcatheter heart valves — and, hey…KARMA’S A BITCH. <— yeah, that says “ONE BILLION”.

I’ll probably hold this grudge forever, but generally don’t make a big deal about it, because we ended up switching to the Ping and have loved it ever since.  You keep loving your Medtronic pump, and I’ll keep loving you anyway 🙂

Rant aside, there are a couple things I don’t like about Medtronic’s insulin pump technology.  For starters, could the bolus be delivered any slower? Cripes. When I want to get a pre-bolus started, I want it started N-O-W. Not 5, 10, 15, 20, whatever minutes from now. They’ll say people have complained about Animas boluses stinging, because it delivers faster {about a minute}. 1) That has rarely/practically never been an issue for my kid, and 2) A shot delivers faster than any pump out there, so… Moving on, Medtronic pumps are also notorious for “motor errors”. Anyway, I’m not a fan of their proprietary-tubing-thing either. You have to use THEIR products, even if you find one elsewhere that works better for you. It’s not waterproof, and the screen contrast is rather poor in comparison to other pumps. Lastly, Dexcom consistently outperforms Medtronic’s CGM technology when it comes to accuracy and sensor comfort.


In the end, there is one other detail that influenced our decision to stay with Animas. Before I mentioned it, however, I wanted to demonstrate that Animas has earned our business based on their own merit and solid record of performance in our home.

Last month, Mr. Rose completed his Bachelor of Science in Information Technology/Information Management and graduated after 5 long years of schooling.  His shiny new degree comes with a career change…which means we’ll be facing some uncertainty about how our health insurance situation will be impacted.

animas supplies

Right now, we have everything we need to keep insulin pumping through an Animas device around here…and that security is priceless.

P.S. (There will be one big change with our next pump order. Sugar will be switching from pink to green 🙂 Awesome color options are another reason she loves her Ping!)


It Has Arrived: The Animas Vibe!

The Animas Vibe is the first insulin pump to integrate with the Dexcom G4 continuous glucose monitoring system.

Well, my U.S. friends…


(That is…it’s over if you’re 18 years or older, anyway.)

The long-awaited Animas Vibe received final FDA approval on November 25, 2014 and made it’s debut in the United States with a press release on December 1st. The Animas Vibe has already been met with resounding success internationally throughout Europe, Australia, New Zealand, and Canada.

The most obvious feature that sets the Vibe apart from other technology is the integration with Dexcom G4 continuous glucose monitoring technology. Studies have shown Dexcom to be the most accurate continuous glucose monitor available in the United States.

And, while that’s completely newsworthy all on its own, there are actually a few other features that make the Vibe pretty attractive as well…

** Animas has added a “Jump to Value” bolus — which means no more scrolling up from 0.00u!! With the simple push of a button, the suggested bolus will appear, and then the user can scroll up or down from that point, as desired.

** Have I ever mentioned how important I consider the “Insulin On Board” (IOB) feature? Because it’s a dealbreaker for me. I consider the IOB feature to be one of the most important aspects to an insulin pump.

On the Vibe, you can see IOB information right on the CGM Data Screen.  #swooning!


** Animas has improved the interfaces for inputting and editing individualized pump settings such as carb ratios, targets, and insulin sensitivity factors,

All of that being said, there are a few bumps in our road to the Vibe…for starters, at this point you have to be at least 18 years old to access it. Sugar is 11. That means more waiting. Fortunately, however, pediatric approval is in the works, though no timeline has been given as to when we can expect it.

Waiting longer gives us more time to mull over the decision to exchange our remote for the integrated CGM…because the Vibe doesn’t use a remote.

I know.

I’m equally as heartbroken about it. I’ve known this truth ever since first hearing about the Vibe eons ago, but it doesn’t make it any easier for me. We love the remote feature of the Ping. It’s a difficult predicament for someone, like me, who wants both features, like, NOW.


Sugar’s warranty expires on 12/27/14. Stay tuned for an updated round up of why we have chosen to stay with Animas, and I’ll be sure to bring you more Vibe updates as they surface.

To close out this post, I wanted to share that I had an opportunity to ask Animas a few questions about the Vibe. I’ll post the questions and answers here, in their entirety:

  1. Can we still use the same Animas cartridges? Yes
  2. Does the suggested bolus auto populate? (Not necessary to scroll up from 0.00u – instead the suggested bolus shows up first, and then the user can scroll up or down from there as desired.)  The suggested bolus will not auto populate. However Animas has added a Jump to Value bolus populator feature to Vibe. When a recommended bolus is calculated, 0.00u will still be shown on the screen; but with a single press of the up arrow button, the amount recommended by the bolus calculator will automatically populate in the dose amount field on screen. The user no longer needs to scroll up from 0.00u to the recommended amount.
  3. There’s a burning question — particularly among parents — inquiring as to why the Vibe doesn’t have a remote? While Vibe does not feature a meter remote, Animas will continue to offer OneTouch Ping for patients and parents looking for that specific feature. Our goal is to provide people living with diabetes a range of products to meet varying needs, including CGM technology and meter-remote capabilities.
  4. We use the One Touch Ping remote and have a solid supply of One Touch Blue strips. If we were to switch to the Vibe, what meter options are available that would still allow the use of One Touch Blue strips? Along those lines, is there a meter that communicates with the Vibe to automatically insert and store glucose readings? Animas is offering OneTouch Verio® IQ Blood Glucose Meter at no charge with the Animas® Vibe™ System for eligible patients. OneTouch Verio® Test Strips are different from the One Touch Blue strips and are sold separately. In order to use the One Touch Blue strips you have remaining, you would have to use either the OneTouch Ultra 2 or the Ultra Mini meter.
  5. The Vibe is only approved for adults,18 yrs and over. Are plans for pediatric approval in the works? Where does that process stand at the moment? We are working diligently to offer this solution to children with diabetes but we cannot speculate on timing of pediatric approval for Animas® Vibe™ in the US.
  6. Aside from the obvious CGM integration, can you share some of the other differences between the Vibe and the Ping? A key difference is the jump to Value bolus populator discussed above. In addition, the Vibe offers an updated interface to simplify setting/editing of user parameters like insulin to carbohydrate ratio, target BG range, and insulin sensitivity factors.
  7. On a side note, since the Ping is still an Animas pump option, are there any plans to update the remote? We are constantly evaluating our product portfolio, listening to our customer’s feedback and looking for ways to improve on what we bring to market. However, due to compliance concerns we cannot comment on future development of the OneTouch Ping remote.

Here’s more information if you’re interested in updating to the Animas Vibe:

What does a patient need to do to switch from OneTouch Ping to Vibe?

  • Once Animas® Vibe™ is available in the US, we will provide an EZAccess Upgrade program, which offers patients who qualify the opportunity to upgrade to our latest technology, Animas® Vibe™. More details of the EZAccess Upgrade program will be made available when the program is launched.

 What does a patient need to do when switching from a different company to Animas?

  • If a patient would like to switch to either the OneTouch Ping or the Animas Vibe they should discuss this with their health care provider first.  From there they can determine which option works best for their diabetes management and contact Animas Customer Support at 1-877-937-7867.
**Disclaimer: I have an existing relationship with Animas. However, is SOLELY owned by me, myself, and I and All opinions expressed here are from my own (candy) heart. I was not compensated in any way to share this information with you today**

Going Bionic

July 25, 2014 will mark the 9th anniversary of Sugar’s diagnosis with Type 1 Diabetes.

Nine years of finger pokes, shots, pump sites, and managing insulin for every speck of carbohydrate she eats or drinks. Nine years of carefree childhood balanced with the burden of chronic disease. Nine years of trying to learn everything there is to know about an all-consuming diagnosis, while simultaneously fostering independence in constant preparation for the day she takes control of her own care. Nine years of overnight glucose checks, A1c’s, lab draws, quarterly office visits, 504 meetings, school training, and advocacy.

If you had told me, on July 25, 2005, that nine years later, the child fighting for her life in that PICU bed would embark on an experience to radically alter the course of managing Type 1 Diabetes forever…well, I would have just stared at you, blinking confused as if you were speaking a foreign language to me. Then I would have started crying (again).

But it’s happening.

Sugar has officially been placed as one of 2 eleven-year-old girls who will wear the Bionic Pancreas for five days as part of a clinical study at diabetes camp. Even better, the other eleven-year-old girl is one of her diaBFF’s, Ally! (Stay tuned — I’ll be sharing the story of their friendship coming up next!)

What is a Bionic Pancreas, you ask?

Engineers from Boston University have developed a closed-loop bionic pancreas system that uses continuous glucose monitoring along with subcutaneous delivery of both rapid-acting insulin (to lower blood glucose) and glucagon (to raise blood glucose) as directed by a computer algorithm. The bionic pancreas automatically makes a new decision about insulin and glucagon dosing every five minutes.

a and a going bionic

It’s five days of not having to think about how to respond to her blood sugar. It’s five days of running carelessly with the wind without the fear of hypoglycemia. It’s five days of enjoying food without calculating the number of carbohydrates on her plate. It’s five days of being surrounded by other children who face the same challenges, and five days of  feeling “normal”. It’s five days of going to sleep without anxiety about the “what ifs“, and five days of waking up with a glucose level in range, ready to start a new day.

It’s five days of a life Sugar doesn’t remember, and five days of a glimpse inside her future at the same time.

(P.S. I’ll be documenting our journey as much as I can, so be sure to stop by again soon! Here’s the Candy Hearts Blog Facebook Page, where I’ll be posting links for regular updates.)

Photo-A-Day: Advocate

dmpad 5

 I won’t always be there to do it for her.

As her mother, I believe it is my responsibility to teach her how to stand up for herself in this world.

Originally posted in July 2013 over at Type 1 Nation, I’m re-sharing this post about our journey to the 2013 session of JDRF Children’s Congress through advocacy.

I stood next to my baby’s hospital crib, staring at the cardiac monitor and multiple IV pumps. Her little face was incredibly swollen, and she couldn’t open her eyes. She was barely conscious, responsive primarily to painful stimuli. Every 15-30 minutes she moaned as someone poked holes in her innocent little body – arterial lab draws, multiple attempts for venous access, finger and toe pricks. As the night progressed, she slowly began moving around more, and eventually called out for me.


At first it was just a soft whimper, but before long I could hear the energy return to her tender voice, and took comfort in her stronger cries.

Our journey to JDRF Children’s Congress began on July 25, 2005.

I didn’t know it at the time, of course. At the time, I was lost in a haze of confusion, fear, and disbelief. I was overwhelmed with information, and doubted my ability to learn everything necessary in order to keep her alive at home.

The horrible low blood sugars started shortly thereafter: random occurrences of passing out, hitting her head, and an hour or more of confused recovery.  She was hardly able to communicate verbally, let alone find the words to tell me when something was wrong. Paralyzed by anxiety, I was on constant guard for the next episode, and secretly wondered if it would be the one that would take her life.

And I knew.

Faced with the imminent loss of our health insurance, my husband began a worldwide search for a position that would provide our family with secure access to benefits. Ultimately, we would leave everything we had worked for behind to move across country as the economy crashed around us. In the interim, I called one insurance company after another in search of a policy to cover the gap, and was denied time and time again, because of her “pre-existing condition”.

And I knew.

We decided to transition to an insulin pump, hoping the precise micro-dosages would stop the terrifying lows. We had to fight with our insurance company to prove it was a medical necessity. We had to fight with the medical supply company to use the infusion set that suited her best. We had to fight with the pharmacy to get the number of test strips we needed.

And I knew.

She started preschool, and they refused to help her in the classroom. Then the school nurse insisted that we put her back on injections. Even after district level meetings involving an advocate, she was sent home with a low blood sugar once, because she identified a problem at 3:22 when the school day ended at 3:20.  My neighbor carried her limp body to my doorstep five minutes later in tears after trying, unsuccessfully, to force her to drink a juice box in the parking lot.

And I knew.

I knew we had to fight back. I knew I needed to equip her with more than her diabetes supplies. I needed to help her find her voice; then use it to advocate for her rights, her health, and her life.

We applied to attend Children’s Congress, and were rejected.


And again.

All the while, she attended meetings with legislators at our State Capitol, worked hard to raise awareness in her community, and made it a point to welcome newly diagnosed kids into her circle of T1 friends. She has defeated stereotypes, overcome challenges, and takes great pride in her ability to manage her diabetes with confidence.

In the fall of 2012, we applied for Children’s Congress a fourth time and cheers erupted from our home when she opened her invitation of acceptance a few months ago. The road to Children’s Congress has been a steady journey of battles and victories, but one thing is for certain:  She’s just getting started!

You Are.

She went and did it again.

You know…


She grew.

I crept in for a post-correction finger poke the other night.  She stirred a little before opening one eye…”What am I, Mom?”

I looked at her meter, and then kissed her nose, half nuzzled under the blanket.  I stroked my fingers through her hair, and answered with “You’re my amazing, beautiful, wonderful, incredible, one-of-a-kind angel .”

It didn’t matter that her eyes were closed or that the room was dark.  I could feel the eyeroll.  “I know all THAT, Mom.  What.    is.    my.    blood.    sugar?”

I wanted to reply that she’s a million marvelous things wrapped up into one very special package.  I wanted to tell her that every milestone I’ve witnessed has been fascinating to me.  I wanted to whisper in her ear how awestruck I am by her ability to face each new day with a smile.  And then I wanted to scoop her into my arms, and tell her that being her mother is, by far, one of the greatest blessings my life has ever seen.

“You’re sugar is 85.  You still have a little IOB left from that correction a couple hours ago, so I’m going to get a juice and set a short temp basal decrease.”

(Sidenote:  I think it’s crazy that my little girl understands this language.  Diabetonese T1.)

From my phone, I posted our little exchange on Facebook (I mean, hello, isn’t EVERYONE awake to update FB at 2 am?).  Then I programmed the alarm for another check a couple hours later, and headed back to bed.

And that’s where this story ends — or maybe where it begins?  You see, that middle of the night FB post has ultimately become one of my “most liked” status updates ever.

It dawned on me that there are people with diabetes (PWD) everywhere who are tossed between insurance companies and busy doctor’s offices.  To medical supply companies and pharmaceutical companies and technology companies, they’re just a number.  Their personal worth is often summed up by the black and white lab results on paper.  They wander from one day to the next, facing stereotypes and dodging stares when caring for themselves.

And so, to each of you — young and old — who poke your fingers, deal with insulin, and press onward in spite of all of it…I just wanted to tell you something:

Somewhere in your life, there is someone whose days are brighter because you’re a part of them.

Somewhere someone’s heart would be incomplete without you.

Somewhere someone understands what a balancing act this life is, and thinks you’re a wonderful, incredible, one-of-a-kind angel — regardless of what your A1c may be.

Somewhere you are someone’s dream come true.

It could be a parent, a child, a friend, a sibling, or a spouse.

It could be all of them.

In case you need a reminder, you should know…

YOU are strong.
YOU are distinct.
YOU are cherished.

YOU are so much more than the number on your meter.

Transforming Lives – Notes

Transforming Lives:  Diabetes Today and Tomorrow was an incredible outreach conference event sponsored by the JDRF Desert Southwest Chapter.  Today I’d like to share some of the notes Mr. Rose and I took during our conference experience:

H. Peter ChaseH. Peter Chase, MD is the Executive Director, Clinical Director, Director of Pediatric Clinic, Emeritus and is currently Professor of Pediatrics at the Barbara Davis Center for Childhood Diabetes, University of Colorado.  Dr. Chase studies the use of continuous glucose monitors in youth and the development of algorithms to prevent hypoglycemia using a closed loop system and screens family members of patients with type 1 diabetes to detect those at high risk for possible participation in prevention studies.  He is the well-known author of the three most frequently used family education books using the Pink Panther character as well as over 300 research articles and book chapters.  Dr. Chase will deliver the opening keynote.

The day started with an opening keynote by Dr. Peter Chase.  Dr. Chase authored Understanding Diabetes…also known as “The Pink Panther Book”.  “The Pink Panther Book” was an instrumental tool for Mr. Rose and I after Sugar was discharged from the hospital following her diagnosis in 2005.  I read it from cover to cover, highlighted many sections, earmarked numerous pages, and carried it with me in her diaper bag everywhere for the first several weeks.  It truly was the foundation for our crash course in Type 1 Diabetes management.  After coming home, I could barely remember anything we learned during her hospitalization.  Thank goodness for “The Pink Panther Book”!  Suffice to say that, for me, the opportunity to hear Dr. Chase speak was quite an honor.

  • A1c target goals that he believes lead to the best chance of life without diabetes-related complications: 
  1. Ages 6 years and under:  7.5% – 8.5%
  2. Ages 6 years thru 12 years:  Less than 8.0%
  3. Ages 13 years thru 19 years:  Less than 7.5%
  4. Over 19 years:  Less than 7.0%
  • Noted that DKA is the leading cause of death in people with Type 1 Diabetes who are less than 30 years of age.
  • Discussed importance of not over treating low BG’s, and reminded audience that a BG of 80mg/dl is a NORMAL BG.  80mg/dl requires treatment if the person is believed to be dropping further (i.e. “feeling low”, other physical symptoms, or an accurate CGM reading indicating that blood sugar is dropping). Stated that a “true low” BG is less than 60mg/dl, and emphasized that everyone spends part of their day in the 60mg/dl – 70mg/dl range.
  • Reported that globally the incidence of T1D is rising at a rate of about 3-5% per year.  It is believed that “something environmental” can be attributed to the rise.
  • Also reported his research indicates that approximately 75% of “bad lows” occur at night.
Lauren Woodward TolleLauren Woodward Tolle, Ph.D. is a licensed clinical psychologist in Denver, CO.  Lauren completed her doctoral work at the University of Nevada, Reno and postdoctoral work at the University of Colorado School of Medicine. Lauren also has a Master’s degree in Applied Health Psychology from Northern Arizona University. Lauren’s research interests include evaluating clinical outcomes of evidence-based practice in primary care as well as pediatric settings.  Lauren has conducted research and published in the area of improving diabetes management and family communication for adolescents with type 1 diabetes. She greatly enjoys working with this population. In her spare time, Lauren enjoys spending time with her family including her newborn son, Liam, in beautiful Colorado.

Next, I attended “The Teen Age:  Managing Type 1 Diabetes During Adolescence”.  I don’t have very many notes from this session, because Tink had become restless in the KidZone and I was called out to tend to her.  (She just needed her mama for a bit…well, at least until Cherise offered up her snazzy iPhone and found a Dora show for her to watch.)

Dr. Woodward Tolle authored a workbook titled Help with the Hard Stuff.  This workbook is designed for T1 teens and their parents to work through over the course of 9 weeks.  Here’s the description from Amazon:

Help With the Hard Stuff is a workbook designed for teens diagnosed with Type 1 diabetes and their parents. Living with Type 1 diabetes is difficult enough for adults, but for teenagers it adds to the already increased stress of social pressures, self-awareness, and responsibility. This workbook can help the whole family better understand basic diabetes information and important facts associated with good diabetes care. It also provides evidence based cognitive-behavioral strategies that can be helpful in facilitating health behavior changes, such as when problems arise with treatment adherence. Help With the Hard Stuff is designed to assist in making the transition in care from parent to adolescent smoother and more successful. It does this by addressing key factors that are associated with better adherence such as self-monitoring of blood glucose, coping effectively with a chronic illness, gaining social support, improving family communication. It also assists parents in learning how to provide autonomy-promoting support and provides a glossary of commonly used terms in addition to a section with resources for more information.

Gary ScheinerGary Scheiner MS, CDE is the Owner/Clinical Director of Integrated Diabetes Services.  A certified diabetes educator, masters-level exercise physiologist and person with type 1 diabetes, Mr. Scheiner has dedicated his professional life to improving the lives of people with insulin-dependent diabetes.  Mr. Scheiner has authored four books:  You Can Control Diabetes, Think Like a Pancreas, The Ultimate Guide to Carb Counting and Get Control of Your Blood Sugar.
Meanwhile, Mr. Rose attended “Managing Blood Sugars During Sports and Fitness Activities”. Gary Scheiner authored Think Like A Pancreas, another book I would consider to be one of the most helpful tools I’ve encountered in preparing me for the journey of raising a child with diabetes. I’ve also attended several of Gary’s online classes through Type 1 University, and not only do I find him to be a wealth of valuable information, but he’s an awesome presenter as well! 
  • Optimal BG for strength, stamina, speed/agility, flexibility, safety, and mental sharpness is 140mg/dl.
  • If exercising for greater than 90 minutes, small snacks should be taken without insulin coverage during the duration of activity.  (An example would be a couple jelly beans periodically while exercising.)
  • Once the temperature reaches 90 degrees, insulin begins to break down, and lose it’s effectiveness.
  • Other variables that affect exercise:
  1. Active insulin
  2. Insulin site
  3. What has been eaten
  4. When it was eaten
  5. Emotional state
  6. Temperature and humidity
  7. Pain/Discomfort with activity
  8. Amount of activity


Manny HernandezManny Hernandez heads the Diabetes Hands Foundation, a nonprofit that connects, engages and empowers people touched by diabetes through its social networks, (in English) and (in Spanish) and programs like the Big Blue Test and No-SugarAdded Poetry. Diabetes Hands Foundation offers information and support to nearly 200K people around the world every month.
Cherise ShockleyCherise Shockley was diagnosed with Type 1.5/ LADA (Latent Autoimmune Diabetes of Adults) in 2004. She is the Founder of Diabetes Social Media Advocacy (DSMA) a real-time communications resource for the diabetes community, their family members and caretakers. She is moderator of the DSMA twitter chat (, and co‐host of “DSMA Live” (blog talk radio show). Cherise is a contributing author to “MY SWEET LIFE: Successful Women with Diabetes.” 
Bill WoodsBill Woods  is the founder of a website that encourages people with diabetes to live a happy and healthy life.  Mr. Woods  was awarded the 2009 Creative Mind award voted on by the diabetic online community.   His award winning videos for “Making Sense of Diabetes” led the way in spreading awareness of diabetes through internet video creation.

NEXT UP:  The DOC: Diabetes Online Community!  HOLLA!  WOOT WOOT!  I had the honor of introducing these awesome speakers to the audience 🙂  And they had some pretty interesting things to share…

  • Social media isn’t a fad.  It’s a fundamental shift in the way we communicate.  
  • If Facebook were a country, it would be the THIRD largest populated country in the world.
  • Together the DOC has completed and shared petitions, participated in the Big Blue Test, and battled misconceptions in the media.
  • Ways to evaluate social media resources:
  1. Does it agree with clinical standards?
  2. Are there accessible and readable privacy policies?
  3. Are there controls on sharing personal data?
  4. Are there honest disclosures?
  5. Are there any voluntary accreditations?
It was fun to see some familiar faces during the presentation, even though they weren’t there in person… Hi Kelly, Mike, George, and Scott!
And I laughed when my Facebook page popped up there…

Anyway, the DOC session was fun to watch unfold after several conference calls spent piecing it together.  I thoroughly enjoyed every moment of the time I was able spend with my friends, and hope to have the chance to hang out with them again 🙂

Aaron KowalskiAaron J. Kowalski, Ph.D., oversees JDRF-funded research aimed at accelerating the delivery of therapies that will help keep people healthy while living with type 1 diabetes, minimizing their risk for developing diabetes complications, as well as therapies that will help those who have developed diabetic complications. Dr. Kowalski is an internationally recognized expert in the area of diabetes technologies and has been a leader of JDRF’s Artificial Pancreas Project, a multi-million dollar initiative that began in to accelerate the progress toward a closed-loop automated insulin-delivery system. He has authored numerous articles in the field, including a landmark study in The New England Journal of Medicine which revealed the effectiveness of continuous glucose monitors in type 1 diabetes. Dr. Kowalski has traveled widely across North America and abroad describing diabetes research progress, and is known for his ability to translate science into easily understandable concepts.  Dr. Kowalski will deliver the keynote research update.

Dr. Kowalski delivered the closing research keynote address.  I have to admit that I didn’t take many any notes as I was captivated by the oddly familiar inspiration happening inside.  I remember attending research updates shortly after Sugar’s diagnosis, and feeling empowered and motivated.  Somewhere in the last few years, I lost my ability to feel those things about research and technology.  I mean, I’ve kept up with it, but I often find myself building a wall around my bubble of HOPE.  Rather than allow it’s energy to permeate my heart and soul, I tend to turn off the switch and move on with the day-to-day grind of raising a child with diabetes.

It felt good to feel hopeful again.

Anyway, I had the pleasure of hearing Dr. Kowalski a few years ago, and remember thinking that he was so personable and easy to understand.  Sometimes “research chat” gets over my head and intimidating, but both times now that I’ve heard him, that hasn’t happened.  I’d highly recommend anyone take the opportunity to hear him if you have the chance.

I found comfort when he discussed the Artificial Pancreas Project.
I found comfort when he discussed micro/macro encapsulation and beta cell regeneration.
I found comfort when he discussed potential vaccinations to prevent T1D from developing.

I found HOPE (again) in Treatment, Cure, and Prevention.

This is Part 2 of a 3 part series.  Stay tuned as I share my closing thoughts and personal impressions. More on Transforming Lives…

Part 1:  Transforming Lives – Overview 
Part 2:  Transforming Lives – Notes
Part 3:  Transforming Lives – Closing Thoughts

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