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!

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.

JDRF

ADA

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!

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…

THE WAIT IS OVER!!!!

(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!

screns

** 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.

Sigh.

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, CandyHeartsBlog.org 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**

A Bionic Friendship: Introducing Addy and Ally

1

Addy was diagnosed with Type 1 Diabetes on July 25, 2005.

Ally was diagnosed with Type 1 Diabetes on February 10, 2009.

They live several states apart, and their paths probably wouldn’t have ever crossed if their mothers, Wendy and Misty, hadn’t been active bloggers in the Diabetes Online Community. Before Facebook and Twitter began defining the landscape of social media, Wendy and Misty were seeking online support by sharing their personal journeys of raising a child with diabetes through their online journals.

2

In 2010, Ally sent Addy a special little book she made about her “diabetes friends”…

3

Since then, the girls have kept in touch, supporting each other via e-mail…

4

And Skype…

5

And, most recently, text messaging (YIKES!)…

6

Addy and Ally (and their families) met for the first time in person at the 2012 CWD Friends for Life Conference

7

Then again in 2013

8

So, perhaps this IS a story about two girls…but it’s also a story about two families…

9

Two families who have three little girls each, the oldest of whom has Type 1 Diabetes.

Two families who long for the day their girls — and every person with T1D — will experience life without the constant “basal thinking” that is necessary to survive from one glucose check to the next.

Two families who are bonded through this journey, and whose lives have been forever changed because of Type 1 Diabetes.

10
This post is part of a series of updates documenting Addy and Ally’s experiences as part of a clinical trial for the Bionic Pancreas in the Summer of 2014.
Postscsript – I don’t generally use my daughter’s real name here, on the ol’ bloggy blog.
Each of my girls actually have their own cutsie nicknames, but I’m making an exception today, because putting the names “Addy and Ally” together is too sweet {pun intended} not to!
I know.
Stop laughing.
I’m really not that sappy all the time.

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.)

#FFL12: Poolside Dex Checks.

I was standing by the pool, waiting for a group I had planned to meet when I saw a cute little family   checking things out.  After being greeted so kindly by several people during my first experience at FFL, and feeling pretty confident this family was in town to attend the conference, I approached them with a smile in hopes that I could help them feel welcome.


Before I could say anything, however, she looked at me and said “You’re Candy Hearts!”


(This is always surprising to me whenever it happens, btw.  I’m honored and humbled to know our family has so many supportive friends out there…so please, please, please {!!!} feel free to say hello anytime, because we really do enjoy meeting you guys!!)


I smiled back, and asked about the two cutie-pie girls with them.  Before I knew it, one of the girls was showing me her pump and pulled out Dexcom…I swear sometimes I think all little girls are the same — she reminded me so much of Sugar just a couple years ago.  


With Dexcom in plain sight, my new friend let out a deep sigh, and mentioned the mixed blessing that comes with all the information a CGM provides.  I completely understood.  The arrows are awesome when deciding how to proceed from one minute to the next, but then there’s a punch in the gut when you see the glaring peaks and valleys.  She pushed a button, and I saw the familiar pattern of rolling hills ……. cruising up ……. and down ……. and up …….


“It’s so bad.  I can’t believe I’m showing you how horrible we are at managing her diabetes.”


“What?  You’re not horrible!  This looks totally normal to me.”


“It does?”


“Yup.”


“But she spikes so high, and sometimes it takes forever to come down, and…”


“Normal.”


She pointed to a spike…


“Normal.”


And another…


“Yup.”


“But people don’t ever post pictures like this!  I never see Dexcom pictures online that look like this.  I feel like I’m letting her down, and can’t figure out how to fix it.”


*DING DING*!!!!

Oh, my friend.  I have been there!!!  I can completely relate to the feeling that everyone else seems to have their act together, except you.  And so, because I want to reassure you that you’re doing a great job, here’s a few pics I dug out to prove that we have days like those too…



And, guess what?  


We aren’t the only ones!!!!



You aren’t alone, my friend.


Pinky promise.


PS (I’ll be adding more links as I find them, so feel free to stop by again!  If you have a related post, please leave a link in the comment section so I can add it!)

Anatomy of Her GlucoCoaster (Along with the Apidra 6 Week Review.)

Apidra has been going well.

Really well.
You might remember that I had a moment of crazy, and randomly filled Sugar’s insulin pump with Apidra on Thanksgiving night.  It was 2 days after her last endo appointment…which happened to fall right smack dab in the middle of a perplexing rut of blood sugar madness.
That’s always fun.  There’s nothing quite like showing up for your endo appointment with practically nothing except 400’s to show for the previous week.
Anyway, it’s been about 6 weeks now…which means we’re about 6 weeks away from our next endo visit.  In this pic you can see that her averages began dropping between the 60 day and 30 day marks.  I’m crediting the improvement to Apidra since the 6 week point falls in there somewhere.
851 finger pricks divided by 90 days = 9.4 tests a day.
In the past 6 weeks, we’ve rarely seen a BG over 300.  Since changing insulins, her overall average has dropped nicely into her ideal target zone of 80 – 150.  I do believe we’re seeing the proof in the pudding that Apidra is a more effective insulin for managing Sugar’s diabetes. Obviously the true test will lie in how well her numbers do over the long haul, but I’m definitely encouraged.
So, with all that being said…
Diabetes can be a flipping SHREW sometimes.

I present Exhibits A, B, and C – Z:
That was 2 days ago.
Since I’m a “seize the moment” type of girl, I snapped a picture to help me break down the zones, and get to the nitty gritty of how the anatomy of these numbers look from my viewpoint.  
GREEN LINE — The area just above this line tends to bring a little shakiness, along with hunger. The areas below this line, however, can cause combativeness, confusion, and loss of consciousnesses.  She becomes ravenous once she begins to recover, and often wants to take a nap.  If we cannot bring her blood sugars up quickly using fast acting sources of sugar, she’s at risk for a seizure, and her life could be in immediate danger.  She may require an emergency glucagon injection.  Before starting the pump in 2007, Sugar used to pass out from low blood sugars pretty regularly.  It was horrible, horrible horrible.  Thanks to the ability to program an intermittent ZERO basal rate into her regular pattern, keeping close tabs on Insulin On Board, and administering micro doses via her insulin pump we were able to put a stop to these horrifying episodes.

WHITE LINES — Coloring between these lines brings (me) euphoria.  I think she feels “normal” in this range…sadly, however, I’m not sure she really knows what “normal” feels like.  In this range, she’s upbeat, positive, and smiles almost all the time.

YELLOW LINE — Around the yellow line, she tends to feel a little lazy and distracted.  If she’s doing something that interests her, she acts pretty normal – otherwise, she’s easily bored.  She might drink a little more water, and tends to ask for repeated snacks, especially if she hangs out in this range for any period of time.  We don’t particularly like to see numbers in the 200’s, but they’re not something that cause much frustration unless we can’t seem to bring them down. We’ll try up to 2 correction attempts and then a site change, unless she’s continuing to climb – in which case, we’ll change the site sooner.

ORANGE LINE — Up in this range, she’s definitely thirsty and needing to use the restroom more frequently.  She has a terrible time concentrating, and her handwriting becomes pretty sloppy. She’s usually trying to eat anything she can put in her mouth, including a crumb or two from the countertop.  She gets emotional, and often starts crying for no apparent reason.  She’s easily irritated and often complains of a headache.  Sometimes she says her tummy hurts as well.  We’ll usually attempt a correction via the pump one time as long as no ketones are present.  If there hasn’t been a significant improvement within 2 hours, we’ll change the pump site using fresh insulin.

RED LINE — At this point, she’s downright cantankerous.  She wants to eat, drink, and stomp her feet.  She becomes incredibly emotional, and cries easily.  Her head hurts, her tummy hurts, her eyes hurt, her legs hurt.  She’s dying of thirst, and can’t seem to get enough ice cold water. She’s downright miserable, and usually needs to lay down to rest for awhile.  If she continues climbing, or stays in this range for very long, she’s at risk of DKA, which can progress to coma or death.  This area is managed with an immediate correction via injection, and a complete site/insulin change.
I don’t know what it feels like to have a BG under green or up in red.  Since she doesn’t wear Dexcom full time, I’m often wondering what direction her numbers are moving.  Assuredly, I would have changed her site on this day when she was 350ish and then climbed to 450ish. With those Dex arrows, though, I knew she was going to be okay.  
I see these sharp rises and falls, and stand in awe of how well she handles them.  You’d never know from looking at her that she was having a day like this.  After 6 years of witnessing how difficult some most of these ranges can be for her, I’m just amazed at how awesome she is.
More on our APIDRA experience…
The day we started.
The experience.
The trial end.
The 6 week review.
The verdict.

I have so far to go.

And, to be quite honest, I’m not exactly sure where to go from here.


I couldn’t breath.
I couldn’t move fast enough.
I couldn’t get up and down without losing my balance.
I couldn’t do one. single. push up.


My shoes weren’t tied tight enough and started falling off when I was trying to sprint back to baseline.
My back hurt.
My foot hurt.
My head hurt.


My spirit hurt.


For the most part, I stayed pretty quiet for the duration of my first BodyBack class.  


Partly because I was afraid.
Partly because I was overwhelmed.
Mostly because I thought I’d cry if I opened my mouth.


I weighed in at the highest weight I’ve ever recorded for myself.
That was at the beginning of class.
I felt like an avalanche of failure from that point on.


Dragging myself to that class was the first step, I guess.


And, at the end, when the instructor announced that it wasn’t even half of what I could expect in the weeks ahead, I was pretty sure that I’d end up humiliating myself…as if I hadn’t already.


As is the case every night, I got up in the wee hours of the morning to check my sleeping child’s blood sugar.


I kept hearing the instructor’s words…emphasizing the importance of a good night’s sleep for success…and couldn’t help but to wonder if I’m just doomed to fail — again.


When I walked in her bedroom, I knew something was wrong.  Dex was laying on the floor. Obviously it had been alarming and vibrated itself off the table.



Words can’t describe the pit in your stomach, when you see that on the screen…how long has it been like this?  How long has it been calling for someone to come help her?   


Glancing at that trend graph, I got my answer.  And it wasn’t pretty.
Finger poke 45.
Juice box.
Temp basal.
Prayer.


While I waited for a better number so I could go back to sleep, I found myself circling the kitchen floor.
  
I wanted to grab some jelly beans or chocolate or ice cream.
I wanted to make the guilt of missing that alarm go away.
I wanted to feel better.


But I didn’t.


I just kept circling.  Pacing.  Wandering.  
I wonder if 20 minutes of midnight shuffling counts as one of the 2 daily workouts?


Recheck — 81.
Still not high enough.
More juice.


More pacing.


Finally 110.


I made it.
I made it through a frightening overnight low blood sugar…without feeding my anxiety with sugar.


I’ll call that a victory.


Body Back® is the newest program release from Stroller Strides’ founder Lisa Druxman. Body Back is a results based workout program for moms of any age. Inspired by the Mama Wants Her Body BackDVD series, it offers high intensity, interval workouts along with before and after fitness assessments, a nutrition plan, coaching and support in a motivating and inspirational program. The workouts have been clinically proven in a University research study to help moms lose the weight and get their pre-baby body back. Moms all over the country are achieving results that they never dreamed possible. 100% of the weight lost was pure body fat!  You will see that anything is possible!

Thank You

Here’s the other half of the picture I posted of Sugar the other day.
You see, she has a strong local support system.
She knows she’s not alone.
But she feels alone when she’s only one in her class wearing a Dexcom.
The one beeping in the middle of a math test.
The one who misses part of recess because she has to go to the nurse.
I just wanted to take a moment to thank everyone for the outpouring of supportive comments I received after my last post.  Each one means so much to me…you guys really do understand the emotions we’re dealing with and I genuinely appreciate your kindness.

I tried to bring Dexcom up with her again today.  It’s not that I wanted to push her to try it again…more that I just wanted her to talk to me about what had happened at school that made her so upset.

“Mom, I can’t talk about it without feeling like I’m going to cry.”

WHAT?

She’s SEVEN!!!!!!  Nothing in life should be so stinkin’ heavy that it evokes such painful emotion.

Dangit.

Anyway, I was telling her that I told my computer friends about how sad she was the other night…and I shared some of the comments with her.  The next thing I knew, she was smiling ear to ear.

Wow.

The DOC lifted her up, just like it’s lifted me up a million times before.

Lorraine and Alexis suggested a great idea to help her feel less isolated…but I’ll need your help.  I’d like to collect some pictures of people wearing their CGM’s (kids and/or adults) to create a scrapbook for her.  I’ll also use this collection to show her class that there are many people who wear a CGM and it’s nothing they need to be concerned about.  If possible, would you mind writing/having your child write a short note  finishing this statement:

I have diabetes and I am ________________________.

Then take a picture of the note and send it to me with your CGM picture.

candyheartsblog@gmail.com

I’d like to collect all the pictures by Friday, 4/1.

Thank you, my friends.

Seriously.

From the bottom of my Candy Heart,

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