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!

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.

“Mama.” 

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.

Again.

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!

2013 JDRF Children’s Congress – Day 2 (AND YOU!)

Yes.

YOU.

Today is the day that YOU need to answer the call for help. YOU need to advocate with all your heart. YOU need to stand up and be heard.

But I’ll get to that in a moment.

Day 2 began with breakfast followed by a Town Hall meeting with celebrities who are living with Type 1 Diabetes.

Photo by Camera1
Pictured Left to Right: Aaron Kowalski, Sam Talbot, Leslie Adkins, Charlie Kimball, Mary Mouser
Back: Brian Kenny

It was inspiring to hear their stories of triumph and success while living with Type 1 Diabetes. It was also validating to hear them talk openly about highs, lows, and the same frustrations we all deal with.

At one point, Mary Mouser was feeling low and needed to test while sitting up there. Coincidentally, Sugar came to find me at the same time…she was 70.

I did what any ordinarily awesome dMom does: I gave her a glucose tab, and then tweeted it:

“Treating my daughter with a glucose tablet while @MaryMMouser treats on stage. #twinlows at #JDRFcc13  — Wendy (@MrsCandyHearts) July 9, 2013

After the Town Hall meeting and lunch, it was time to get down to business.

And this, my friend, is where YOU come in.

The delegates were divided into 4 groups to begin the blitz training sessions. Basically, we were learning what to expect during our congressional meetings the following day, and how to make the most of the limited time we would have.

Which means…

**WELCOME TO YOUR BLITZ TRAINING SESSION!!!**

You see, $150M (as in ONE HUNDRED FIFTY *MILLION* DOLLARS) of funding designated specifically for Type 1 Diabetes research is at stake, and YOUR voice can make a difference.

That $150M is called the Special Diabetes Program (SDP), and it’s the reason for a wide variety of advances in what we now know about the T1D disease process, technology for management, and strategies for prevention. There have been a multitude of consortia and clinical trial networks, including the infamous TEDDY study and TrialNet, that receive funding from the SDP…and, if Congress does not renew the funding by the end of *this year*, ALL of it will come to a complete halt.

{Read more about the SDP.}

Here’s a great infographic that talks about the burden of all types of diabetes on the United States. It’s worth a few minutes of your time.  You might be surprised to learn that 1 in 3 children born in 2000 are expected to develop some type of diabetes in their lifetime.  ONE IN THREE!!!!  People!!!

WE. MUST. DO. SOMETHING.

But…what??

I’m glad you asked.

SCHEDULE A PROMISE MEETING WITH YOUR CONGRESSIONAL REPRESENTATIVES!

(Anyone can do this, by the way. Parents of children with diabetes, grandparents of children with diabetes, aunts and uncles, cousins, friends, neighbors, teachers…ANYONE who has been touched by someone living with T1D, and who wants to send the message to Congress to renew the SDP, can use their voice to advocate for it.)

What is a Promise Meeting?

You ask such great questions!

Established in 2000, JDRF’s Promise to Remember Me Campaign is all about building these relationships. Each campaign has been more successful than the last. During the 2013 campaign, we encourage people with type 1 diabetes (T1D) and their families to visit their lawmakers while they are at home.

JDRF volunteers and staff are here to help you set up meetings with your lawmakers, so that your story can make a difference in support and funding for programs that advance critical T1D research. Through the 2012 Promise Campaign, an amazing 457 meetings took place! This year, we want to touch them all, by completing 536 meetings—that’s one JDRF Promise meeting for every single Member of Congress! 

Step One – Sign up:

CLICK HERE to join the Promise Campaign.

There ya go. Easy peasy! Now someone will be in touch with you about getting a meeting scheduled with your lawmakers.

Step Two – Share it:

Prepare to share your story.

Think about what you want your lawmakers to know about living with Type 1 Diabetes. It might help to gather a few pictures to help guide the talking points you want to share. JDRF had us make a small scrapbook for Children’s Congress, and it was very helpful in keeping the conversation on task to make the most of our time.

Step Three – Sell it:

Review THIS BROCHURE to gain additional insight into why the SDP renewal is so crucial, and gather some facts to share during your meeting.

During our meetings in Washington DC, we tried to focus on a couple key points instead of talking about everything at once:

1) T1D is an autoimmune disease that can affect every organ in the body. In addition to exploring autoimmunity in general, T1D research examines other medical issues such as blindness, kidney disease, heart disease, stroke, and neuropathy. Basically, you get more bang for your buck by supporting T1D funding.

2) The SDP funds $150M research dollars annually, and JDRF funds $110M.  In other words, JDRF nearly matches government funding dollar for dollar. This balance is the direct result of people who are working hard to push T1D research forward through through bake sales, car washes, walks, and other fundraising efforts. A Promise Meeting is more than a meeting between constituents and lawmakers…it is a meeting between partners.

3) In 2012, the annual cost of diabetes to the U.S. economy was $245 BILLION...and that number is expected to TRIPLE in the next 25 years. WE *MUST* finish what we’ve started in research, or face the consequence of impending doom.

So, there ya go.

Sign up.
Share it.
Sell it.

It’s as easy as 1 – 2 – 3, and EVERY voice counts!

Media Blitz

She’s an ordinary girl.

Go ahead. Ask her.

She’ll rattle off a list of ordinary things she likes to do…and today’s list may not be the same as tomorrow’s list.  She’s a free spirit in that way — each day holds it’s own joy.

When the press releases started flying about her selection as a delegate for the 2013 session of JDRF Children’s Congress, she wasn’t sure what to do with the energy.

“People want me to tell them about my diabetes?” she asked, tilting her head. In her world, pricking her fingertips, counting carbs, and wearing an insulin pump is ordinary.

“Well…they really want to hear more about Children’s Congress, and talking about your diabetes is part of the story.” I replied.

“Oh. Well, okay. I guess that makes sense, then.”

Here’s the Fox10 segment she did… You’ll find her News Channel 12 interview here, and the 3TV spot here.

(FYI — I will embed those videos if/when I find a code.)

This time next week, Children’s Congress will be in full swing.  You can stay up-to-date by following hashtag #JDRFcc2013 on twitter, or keeping up with all the fun on Facebook.  Be sure to follow the JDRF Advocacy page!

You’ve Got Mail!

She was 480 this morning.

I mean…not this morning when she woke up. She was 480 at school, before PE.

I was in my PJ’s, contemplating a bowl of oatmeal for breakfast while pondering dinner. I worked last night, have some emails to return, and an Animas post to write…basically I was just getting my day figured out when the phone rang.

Throw on jeans, tuck hair behind ears, add a little blush and a dab of lip gloss…I’m seriously getting to old to make myself look “spontaneously fresh” first thing in the morning. Anyway, I just got home from changing her site and filling her pump up with new insulin.

And I’m reminded, once again, that insulin is NOT a cure.

But back to the mailbox…

We applied — for the FOURTH time — to attend the 2013 JDRF Children’s Congress this summer. Okay, technically she was a few measly days shy of the 4-year-old age requirement when we applied in 2007, but whatever.  

2007 — “Thank you for applying.”
2009 — “Thank you for applying.”
2011 — “Thank you for applying.”

Which brings us to 2013.

I debated applying over and over in my mind. One day, I was gung-ho, and the next I wondered if it would be better to put it off another couple years. It’s been harder to deal with rejection with each passing year, and I honestly just wasn’t sure if either of us were up for it right now. I wavered long enough that I was left with three days to make a final decision.

Then Hurricane Sandy hit, forcing JDRF to change the deadline.

Which, basically, gave me more time to oscillate as I watched the horrible after effects of Sandy unfold in the media, while trying to escape the political climate of the 2012 Presidential Election.

Before I knew it, the deadline extension was looming, and I couldn’t stagger any longer.

Either apply or don’t, Wendy.  That’s all there is to it.

Period.

So…we sat down together and drafted a letter.  We talked about the election and the types of powerful decisions that are made in Washington DC.  We talked about where insulin technology has been and where it’s going.  We talked about the relationship between Celiac and Type 1 Diabetes.  Then we filed our application, and agreed that, no matter what, we’ll keep our heads held high.

The automated email reply said we should hear confirmation by “early January 2013”.

January came…and January went.

Almost.

One day late last week, I sent an email inquiring about the notification letters.  The reply informed me that our letter was being mailed soon, mentioned something about the possibility of a phone call, and apologized that more information couldn’t be provided.

A call?

That’s curious.

Then I read this post by Moira after it popped up on my FB newsfeed yesterday.

The letters were really on their way.

I happened to be outside when the mailman arrived.  I walked over to see if he had filled our mailbox, and that’s when I saw the blue letter return address peeking out from beneath a circular of store ads.  He handed me our mail, and I picked it out immediately.

It was heavier than a single sheet of paper.

I held it up to the light.

Something was different.

I’m very familiar with the JDRF logo, and could tell something about the logo on one of the pages was different.

I handed our pile of mail back to the mailman, and told him my husband would collect it when he got home from work.

He stared at me like I was nuts, but I wanted Mr. Rose to check it out to see what he thought before sitting her down to open it…

PS  (She’ll always be “Sugar” here…even though you know her real name now!)

Dear 2013 SHELBY GT500 COBRA FASTBACK Owner,

One hundred years ago, she would have died.

In 1913, a diagnosis of Type 1 Diabetes would have been a death sentence.  Insulin hadn’t been discovered yet, and the best hope for surviving another 18 months would have been a strict starvation diet.  As her mother, I would have been forced to watch helplessly as she agonized, and suffered through each of her remaining days.

In 1913, Henry Ford was developing a plan to increase pay for his workers while improving the manufacturing process of the Model T.   Eventually his plan of using an assembly line would become a worldwide standard to provide a foundation for businesses around the globe.  His vision would revolutionize the auto industry, and offer security to his team.

One hundred years ago, one hand would hold despair, while the other held hope.

In 2013, despair has been replaced by hope.

In 2013, FORD created a vehicle specifically to help keep our hope alive. The 2013 Shelby GT500 Cobra Fastback was designed to be a tribute car to Carroll Shelby which would be sold at Barrett-Jackson to benefit JDRF.  Mr. Shelby was born the year after insulin was discovered, and died the year before this car would cross the auction block in Scottsdale, Arizona.

A tribute to a lifetime of hope, indeed.

JDRF is the reason my daughter wears an insulin pump.  They’re also the reason she has access to a Dexcom G4 continuous glucose monitor.  If not for the tireless efforts of JDRF to push the studies that have proven how technology is beneficial in the management of Type 1 Diabetes, our insurance company would never have approved its use, and we’d never be able to afford to pay for it on our own.  The Artificial Pancreas Project gives greater hope for even better management tools, while research continues down the path of cure and preventative therapies.

But none of it…hope for survival, better treatment options, and a cure…none of it would be possible without the kindhearted generosity of people like you.

As I woke her up, pricked her finger, and measured out her cereal, we knew it was just a matter of time before your heart would cross our path. As we made sure she had enough supplies for the day, and double checked to be sure her pump was holding enough insulin, we knew our day would end with an emotional rush of gratitude.  As I watched the coverage on television from my home, I couldn’t help scanning the faces in the crowd, wondering which one would propel our optimism into the future.

She took her place beside Mr. Shelby’s car, carrying a sign to remind the world that she’s alive.

She’s strong.

She’s brave.

She’s BUILT TOUGH!

But insulin isn’t a cure.

The rush of excitement during the auction has become familiar.  You’d think, by now, that I wouldn’t get so emotional, but I can’t help it.  As soon as I see the car, tears well in my eyes. As the bidding numbers grow, my heart is overwhelmed with thankfulness.  Our family has been witness to incredibly profound generosity, and it serves as a constant reminder of the goodness that exists in the world.

This year, my heart wanted to reach through the TV to hug you.  There…at the very end…beyond even what the video clip shows, I saw you wipe a few tears.  In that moment, I knew you believed in hope too.

I’m not sure how to thank someone for offering such a momentous gift to families, like ours, with a connection with Type 1 Diabetes. Beyond the dollar amount, it’s the gift of being blessed. The gift of believing in a better tomorrow.  The gift of knowing we aren’t alone.

Thank you for sharing this journey, and reminding us that hope is alive and well.

Related reading:

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.

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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, TuDiabetes.org (in English) and EsTuDiabetes.org (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 (diabetessocmed.com), 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 1HappyDiabetic.com a website that encourages people with diabetes to live a happy and healthy life.  Mr. Woods  was awarded the 2009 TuDiabetes.org 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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