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!

2015 DBlog Week: I CAN

Ten years ago, I knew.

Deep inside this (candy) heart of mine…I knew.

I knew something was wrong. I knew it was more than an occasional saturated diaper. I knew it was more than a simple childhood virus, but I was too afraid to push harder for an answer. I wasn’t ready.

I couldn’t.

I was right. Something was wrong. Very, very wrong. On July 25, 2005, she was diagnosed with Type 1 Diabetes. The room stared at me – the nurse – expecting that I would step up to teach my husband how to give our daughter a shot. Instead, I sat in a rocking chair, holding our sleeping baby, suddenly afraid of every needle on the planet. I was horrified that this is how she would live…how we would live…

I couldn’t.

At home a few weeks later, settled in for the night…I still replayed the doctor’s instructions in my mind over and over again. When to eat, how many carbs to eat, what to do if she was low, when to test for ketones, when to correct, when not to correct…I drifted off to sleep, and something forcefully woke me around 2 or 3 am. It literally shook me out of a deep sleep and forced me to check her blood glucose level for no reason. I found my baby sleeping soundly with a BG of 38. She barely responded when I was trying to force her to drink juice. I was sure I’d never sleep through the night again.

I couldn’t.

Fast forward a few years, and it was time to start preschool. All the other moms smiled and waved, then went back to their cars. I smiled and waved, then went to the office with my double stroller, newborn, and toddler. We’d sit there for the next three hours so I could be readily available because the staff didn’t feel confident about having her in the program.

I couldn’t.

She was invited to birthday parties, and sleepovers, and swimming playdates. I watched as other kids showed up to navigate these events on their own, but stuck around and didn’t go home. I slept on couches, and passed out cake. I helped monitor poolside, and took care of anything I could so I didn’t get in the way. She wasn’t ready to manage diabetes on her own yet.

I couldn’t.

And then, one day, I could.

I could face the diagnosis and do the shots. I was able to learn how to balance overnight BG monitoring and sleep. I left the preschool…then kindergarten…then, in the blink of an eye, 5th Grade. We figured out birthday parties, and she learned how to handle sleepovers.

Looking ahead, there’s so much yet to come.

Adolescence has arrived. Soon to follow middle school, high school, her first date, class trips, proms…eventually, her first job, driving, and college.

History has taught me I can do this.

WE can do this.

This post is part of the 6th Annual Diabetes Blog Week. To read more I CAN stories, click HERE!

DBlog Week 2013: Day 2 — We The Undersigned

Click for the We, The Undersigned – Tuesday 5/14 Link List.

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change? 
_____________________________________


Attention: Voices In My Head

SHUT. UP.

We the undersigned to hereby request the voices which offer nothing but critical, discouraging, and negative noise to be quiet.

When laying in bed at night, we should not be kept awake because you cannot find anything positive to say.

When trying something new, we should not feel discouraged, just because you tell us we won’t be successful.

When trying to concentrate, we should not be distracted by your clamoring.

When a high or low number appears on the blood sugar meter, we should not take it personally just because you tell us we should.

When life takes an unexpected turn, we should not blame ourselves just because you do.

When looking in the mirror, we should not hate our reflection, just because you don’t have anything nice to say.

When things don’t go as planned, we should not assume we did something wrong just because you think we did.

When a challenge presents itself, we should not avoid it just because you don’t think we can rise to the occasion.

Last week, I attended a Mother’s Day celebration in my daughter’s classroom.  She made me a beautiful card, and answered a few questions.

The topic:  “What ingredients are mothers made of?”

When I saw the title, I froze.

I was sure her words would look something like this…

But I was wrong…
So I’ve decided not to listen to you anymore, Stupid Voices.
And I would encourage anyone out there who may struggle with the same pointless chatter to sign this petition, and do the same.


DBlog Week 2013: Day 1 — Share and Don’t Share

Click for the Share and Don’t Share – Monday 5/13 Link List.

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

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We see Sugar’s Pediatric Endocrinologist 4 times a year. For seven years, she’s watched my daughter grow up. She knew her when her hair was scrunched up into curls all over her little head…and now…with her hair a tangled mess as she tries to style it herself.

I had a brand new baby, and had just moved across country with my diabetic toddler in tow when we first stepped foot through her door. Eventually, my third baby arrived (and she’s had two herself along the way). Sugar transitioned to a pump, started school, and was diagnosed with celiac under her care. She’s signed off on packets of camp papers and 504 stuff and insurance stuff. I can’t tell you how many times she has put her arms around me when the defeat was suffocating…or how many times she’s done the same while savoring victory.

There’s not much I can write about here that she doesn’t already know. And it’s not like I can fake anything with her either. At the end of the day, she will download the numbers and see the averages for herself. She’s a smart cookie, and knows how to read between the lines.
If there was one thing I’d want her to see, it’s that we’re doing the best we can.
Sometimes a rogue high or low blood sugar throws us for a loop, but we’ve refined our ability to catch those fly balls and keep our head in the game. Sometimes emotions run high…and, lately, there are subtle hints that hormones could be running higher (EEK!). Sometimes it’s hard to make sense of anything, and other days everything just falls into place. We’ve managed to keep Sugar’s A1c in a great range, consistently for the past 5-6 years, but it hasn’t always been easy — and puberty has yet to crash our party. The fun has just begun.   
I would hate to ruin her glowing impression of life here, at the old Candy Hearts homestead. So, I won’t mention the “HI” BG we saw a few days ago, after a pool party. Or the two juice boxes in the middle of the night that followed. I won’t mention the day we forgot all her diabetes supplies when I was rushing to get to a kickboxing class, and then I didn’t have anything except a stick of sugar-free gum to offer when she felt low. (Also: Special thanks to the new grad M.D. who did her endocrine rotation with our doctor for sprinting across the street like an Olympic athlete to find us some juice. Pretty sure you saved her life.) It’s probably better to forget about what a bowl of cereal is capable of…or the fact that I still offer it for breakfast. And, seriously, I *KNOW* when I’m supposed to check for ketones, but… well…nevermind. 
Hey, sometimes I get it right.  
As Sugar’s mom, she’s seen me at some pretty low points, but she has always believed in me and my ability to get things back on track.  For that, I just want to thank her from the bottom of my heart.
And, crap.
It’s time to change the lancet AGAIN?

DBlogWeek 2012 Day 7: ONE.

Let’s end our week on a high note and blog about our “Diabetes Hero”.  It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3.  It might be a fabulous endo or CDE.  It could be a d-celebrity or role-model.  It could be another DOC member.  It’s up to you – who is your Diabetes Hero??

Okay, so this post is late.

Actually, when it becomes history, you won’t know that because I’m going to schedule it to make it look like it was written on time.

Except now I’ve spilled the beans.

So…yeah.  This post is late…but the date says it was posted on 5/20 — the official DAY 7 of Diabetes Blog Week 2012.

That’s my story, and I’m sticking to it.

The truth is that I couldn’t decide who I’d make my “Diabetes Hero”.

Immediately, I thought of my daughter, Sugar.  She’s my hero for the way she has gracefully risen to the challenges she faces.  Then I thought of her sisters.  They’re certainly heroes for the way they are able to see beyond diabetes, to the innermost depths of Sugar’s soul, in only the way that a sister could.  Mr. Rose…that man works a blue-collar, labor intensive job, outside, in 110+ degree heat in order to provide for our family.  He’s my hero everyday.

I thought of the hundreds of parents I’ve met who are also raising a child with diabetes.
And the grown-up people with diabetes who have given me the gift of a glimpse into what Sugar’s future may hold.
And many parents of those grown-up people with diabetes who have blazed the trails for parents like me.

Drs. Banting and Best for inventing insulin?  Heroes.
Dean Kamen for inventing the insulin pump?  Hero.
Tireless advocacy organizations?  Heroes.

So, I was stuck.

And then it dawned on me that I was struggling with this topic, because I hadn’t stopped to consider my biggest hero of all.

You see, after diabetes entered our picture, we found ourselves in a predicament.

I carried our health insurance, and didn’t have enough leave to recover from the time I needed to take off when dealing with her diagnosis, before our second baby was due to arrive a few months later.  Without a leave bank, we faced the very real possibility that we could lose our health insurance on the first of the month, following the birth of our baby.

A newly diabetic toddler and a new baby … with no health insurance?

So, Mr. Rose began looking high and low for a job that offered benefits.  (He was a contractor, and his position at the time didn’t offer any.)

He flew out to interview for his current position in October of 2005, and learned the position he was there for didn’t open for new candidates very often.  As a rule, new helicopter mechanics were hired…when someone else retired.

On December 14th, he was offered the job.

I went into labor later that day.

We couldn’t have planned the timing better if we had tried.

We faced a huge move across country, had to leave behind many loved ones, and spent a few months paying both a mortgage and the rent …but we never lost access to health insurance.

That move has turned out to be one of the biggest blessings in our life.  Our marriage been strengthened, and we’ve discovered a number of wonderful friendships.  We found an amazing endocrinologist who was willing to advocate for the insulin pump, even at a very young age.  We live walking distance from the school where an amazing team of nurses (more heroes!) keep track of Sugar every day.  We stumbled into an incredible church community, and have been able to repair our broken spirits from the shock of her diagnosis.  I’ve been given the opportunity to work from home, and he’s been given the opportunity to earn a college degree.

We have truly bloomed where we were planted.

And there is really only ONE hero I can credit it to.

Thank you, dear Lord.

Sugar, about 1 year before our lives changed forever.

DBlogWeek 2012 Day 6: Blueprint.

Back for the third year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

DBlogWeek 2012 Day 5: I Want You To Know.

Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

1)     Sugar has Type 1 Diabetes.  Type 1 Diabetes is an autoimmune disease, which means her own body attacked the insulin producing cells in her pancreas, and no one knows WHY.  It was not caused by poor dietary choices, eating too much sugar, or lack of physical exercise.  We did not “do” anything to cause it, and there is not a significant history of any type of diabetes on either side of Sugar’s family.  It just happened.


2)     When you tell me that “things could be so much worse” it doesn’t help. Managing this disease takes a considerable amount of time, energy, focus, and financial resources. Comparing levels of hardship demonstrates lack of empathy.  You should know that *I* can think of a zillion things that could be worse, but none of them are of any comfort to me when I’m watching my child struggle, suffer, and succumb to the effects of this chronic, life-threatening disease for which there is no cure.
3)     Just because Sugar “looks ok”, doesn’t mean she is.  When a child with a seizure disorder has a seizure or a child with asthma has an asthma attack, you know they need help, because there is an outward display of symptoms.  When a child with diabetes has a low or high blood sugar, you may not be able to tell just by looking at them.  For this reason, it is necessary to check blood sugars every 2 – 3 hours around the clock, every day. If left untreated, both low and high blood sugars can lead to seizures, coma, and death.
4)    This can happen to your child too.  No child is immune to the possibility that they could also develop Type 1 Diabetes.  It can happen to any child — and adults (usually under age 40) as well.  Please call your doctor to request an immediate diabetes screening if you notice: excessive thirst, frequent urination, increased appetite, weight loss (or lack of weight gain, despite an increased appetite), sweet smelling breath, or blurred vision.

Local children living with T1D, and their handprints

5)     My life will stop for blood sugars.  It doesn’t matter if I’m sitting in my state Senator’s office (done it), in church (done it), cooking dinner (done it), in the middle of a store (done it), or in mid-sentence (done it)….if Sugar is having a blood sugar problem, I *will* stop whatever I’m doing to address it.  Please don’t take it personally.  I’ll need a minute or two to problem solve while factoring in all of the variables surrounding that particular number, so just bear with me.  I’ll get back into the game of life as soon as I can.
Taken in 2009 at the end of a meeting with Senator Harper (AZ).
20 minutes before this picture, we were dealing with a BG of 45 mg/dl
right smack dab in the middle of our conversation.

6)    Life is good.  You should know that living with Type 1 Diabetes doesn’t mean our family can’t be happy, feel good about life, or celebrate milestones with (gluten free!) cupcakes.  Yes, it’s hard.  Yes, it’s exhausting.  Yes, it’s complicated.  Yes, it’s all consuming at times.  Despite all of those things, however, we are incredibly blessed to have Sugar in our lives.  We believe that every smile, every laugh, every victory, every joy, in fact EVERY GOOD THING comes from God!  We are incredibly grateful for the way He has carried us thus far, as we make our way through this journey of life with Type 1 Diabetes.

DBlogWeek 2012 Day 4: Technology I want.

Tell us what your Fantasy Diabetes Device would be?  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc.  The sky is the limit – what would you love to see?




Well, first the obvious:  No more fingerpricks, no more shots, no more carb counting, no more mind games, no more highs, no more lows, no more all of it…and no more of all of it without the use of immunosuppressant drugs!!!

But…since that sounds like a “cure”, and this post is meant to dream up a technological wish list, I’ll skip the “cure” part, and go straight to my list of demands:

  • I’d like insulin to change colors when it’s lost it’s potency and shouldn’t be used.  And I’m not talking about a subtle color change, either.  Like NEON GREEN or something.  If it’s a hot Arizona  115 degree day, and you see NEON GREEN in the tubing…or you pull out the last of a NEON GREEN vial from the fridge…or your mail order arrives, but you aren’t home so they leave it on the doorstep…you would know by the NEON GREEN appearance right away that the insulin should not be used.  (Oh, and I’d like pharmacies to replace said NEON GREEN vials without arguing.  It’s not my fault this stuff is so temperamental, but I paid a full copay for a full vial.  It seems reasonable to expect that my full vial will work down to the very last drop, and, if it doesn’t, I’d like it replaced without a headache.)

  • You know those pulse oximeter things that are used to get a quick measurement of oxygen saturation levels?  Yah.  Well, I’d like to slip a sensor on a finger, and get an accurate glucose reading with an arrow indicator.  I’d also like it to have a USB port, so all the data could be uploaded to a very user friendly program that will detect patterns and make suggestions regarding dosage changes.

  • I’d like a pump with an integrated CGM that can be operated by a remote with an LCD touch screen.  I want the remote to have a texting feature, so my daughter could send real time screen shots with questions as necessary.  I’d like the pump to be as lightweight as possible, and I also want it to have a retractable tubing feature.  In addition, I want the CGM to be so incredibly accurate that the pump can detect both glucose and insulin levels and adjust accordingly without much thought on behalf of the person wearing it (or their parents!!).  I’d also like it to have a voice recognition/activation feature, so the user has an option to tell it to program and deliver a bolus for “X” amount of carbs instead of always having to push buttons.  Regarding the previously mentioned finger sensor glucose readings, I’d like both technologies to communicate so calibrations can be done with minimal effort on behalf of the user.

  • Back to that texting feature, I’d also like the ability to program alerts to as many cell phone numbers as I choose.  So, I could decide which phones would be receiving what alerts at what time.  If she’s at school and dropping fast, it would alert me at home, her dad at work, and her nurse in the health office.  The nurse could just send a quick text message with an update or questions as needed. On the weekends, I may disable the nurse’s number, and program a friend’s parent during a sleepover.  Or a babysitter on date night.  Distance wouldn’t matter — I could be on the other side of the globe, but it would continue to alert my cell phone number until I tell it not to. 

  • In addition, I’d like to be able to access the CGM graph remotely…both from the fancy schmancy pump remote, and also via any programmed cell phone.  I want to be able to pull up a live CGM graph via my phone and browse the history.  When a phone number is disabled, this information would not be available.

  • Lastly, I want both the pump and remote to have a GPS device.  Should we lose the remote, we could find it quickly, but more importantly, I would be able to locate my daughter in the event she was ever missing.  

Oh, man…I could totally keep going!!!

But…sigh…since this is all a daydream anyway, I suppose I’d better get on with the rest of my day!

Peace out, Friends!

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