Monday, January 30, 2012

Love Bites (or When Sisters Talk)

On the way to school this morning, my youngest daughter was chatty and excited to tell me how much fun she had over the weekend with her big sister.

"I wish we were sisters.  I mean, sisters that are one year apart.  No.  I mean twins.  Yes, I wish we were twins." 

And then, I could be with her all of the time."

To which I replied, "I love that you love your sister so much."

A long pause and then, she said, "When you are gone, I will take care of her and check her blood sugar and she will check mine.  Because I think we are twins in our pancreas.  We are diabetes twins."

Wednesday, January 25, 2012

Uni-Solve (or Me Solve The Sticky Pricetag Problem!)

Did you know that UNI-SOLVE can actually solve a household problem?

Besides being one of the best Barbie Band-Aid, IV3000 sticky tape, Animas Ping infusion site and Dexcom site adhesive removers in the world,

Oversized thumb not included

This little wipe can also remove these sticky, icky things.

From things like toys, mirrors, frames, glasses, dishes and presents without having to say words-that-make-you-want-to-wash-your-mouth-out-with soap.

Having a UNI-SOLVE wipe on hand makes more time to spend on naturally sweet people like these.

Which is perhaps one of those important silver-lining moments to savor in a world full of type 1 diabetes.

Because certainly, without type 1 diabetes in our lives, we would never know the power of a UNI-SOLVE.

Instead, we would just be doing a whole of this.

Tuesday, January 24, 2012

Slowing The Faucet Down

Imagine you are at your kitchen sink and you flip the faucet handle to make the water gush out as fast as possible.

Water suddenly splashes everywhere!  If you have a garden window, you might see water streaks and certainly, the sides of the sink are covered.  If you are standing in line of the sink, you might look down and see a few water spots on your blouse/shirt.

What happens if you place a glass on its side directly in line of the water?

Bigger, more aggressive splashing with water flipping even father onto the countertops.  Curtains soaked as well as anything else directly in view of the sink, including yourself if you are not wise enough to quickly step away.

Basically, you have ONE GIANT MESS!  And very little water in the sink and whole lot of water surrounding the sink.

I love this analogy because it clearly relates to what we just went through.

My youngest daughter occassionally complained of burning insulin.  This happened once in a while but not frequently enough (or voiced strongly enough) for me to become concerned.  If it happened, she would just say, "Ouch!" and in a blink move on.  I would say, "are you ok?" and as long as she says "yes", I accept it.

In the five years of her type 1 diabetes diagnosis only recently, did this become an issue.  One day, after a very emotional morning with a 8 unit bolus of Apidra insulin, where my daughter wiped away crocodile tears of pain and whimpered that her insulin "hurts so bad", did my mind snap to attention.

No one should feel pain from taking their life-saving insulin.  (shudder)  The "what-ifs" in me start up. 

What if she thinks insulin hurts so bad that she no longer wants to dose?

What if she starts lying about boluses?

What if she gets ketones?  Or worse?

What if?  What if?

Immediately, I started researching the causes for burning insulin.  And would you believe that there is actually very little information documented on this subject?

Enter in my friends within the DOC.

I started by writing on one of my favorite websites for children with diabetes.  I also wrote a question on the facebook page for Naturally Sweet Sisters.  Then, I called my dear friends who are also parents of children with type 1 diabetes and two of my girlfriends that actually have type 1 diabetes.  Each of my contacts landed me into the land of "we have this problem too and this is what we THINK it might be".

Which is reassuring and a bit alarming because that means that all of us are just walking around, in the dark, with a blind fold on for good measure and guessing what we THINK it might be.

Finally, I called our Endo group.

Let me just say that my beloved Endo group had no idea what I was talking about.  Donna, the nurse that returned my phone call said that in all of her years she had never encountered anyone complaining of burning insulin.

(insert screeching brakes!!!)

How could it be that millions, ok, 10-20ish people have either had this exact same problem or have at the least, heard of someone else who does?  But the Endo group has NEVER heard of this? 

Donna did call me back and thanked me for bringing something new to her attention.  She also called a co-worker who used to work at Animas and whom acknowledged that burning insulin does indeed happen.  And we talked about my ideas from the DOC, which were along the same lines as the co-worker from Animas and concurred that they were as good as anything. 

As parents of kids with type 1 diabetes, we already know that we are experts in our field.  Even though our medical degrees might be from Google, we practice with our skills 24/7/365!

Without further waiting, I adjusted the insulin flow from "normal" (we use the Animas Ping) to "slow". 

At our next mealtime, my youngest daughter and I waiting anxiously to see if it would help with the pain.

And it did! 

(insert wave of relief!!)

And then, something else happened.  By the way, don't you love my cliff-hangers???

The something else is rather remarkable.

Youngest daughter's blood sugar numbers improved.

Significantly improved.

The range of high 100's to low 200's is now high 80's to low 100's.  That's about a 50 point difference.

All from changing one simple setting on her insulin pump.

Now, I can't validate this with actual science and I am sure not everyone will believe me.  But in our own personal experience, we think that this is a direct result of the faucet analogy.  Turning the insulin on normal - which is like high - means that the insulin didn't have a chance to disperse properly and therefore, not absorb into the tissue as well. 

Since our youngest has been pumping since she was three, most likely, under her tissue is scarring.  The burning is likely from insulin hitting that scar tissue and causing a bit of pain from the little nerves that are still entwined with the scarring. 

Slowly it all down, alleviated all of that by encouraging better absorption through the slow rate of dispersement and ultimately, negating any effects of damaged tissue and nerves.

But perhaps the most important issue that came from the burning insulin issue is the need to have further research on the effects of insulin.  If our Endo groups are not aware of issues like this, no further research will happen and quite possibly, children (and adults) will suffer in silence thinking that this side effect is OK. 

Which it is not.

I encourage you to call and have documented any issues that your child might be having.  My hope is that if enough of us speak out, than quite possibly, better research and ultimately, better products will be available... while we we wait for our cure.  Because one day, if enough of us speak out, we just might have that cure!

Sunday, January 22, 2012

5 Billion Ways To Treat Low Blood Sugars (ok maybe just a few)

Low blood sugars. 

Sometimes, you can't avoid them.    Every child and adult living with type 1 diabetes has low blood sugars.  It comes with the territory.  While we try our best to avoid low blood sugars, all of these intricate factors which affect type 1 diabetes; such as hormones, illness, stress, exercise, excess insulin, honeymooning, makes it impossible to alleviate them all together.

Ever wonder what having a low blood sugar feels like?

From our oldest daughter:

When I feel low, I can't think.  I mean, I really just can't think.  I need to eat and do it RIGHT NOW!  I like glucose tabs and juice boxes for 'right now' moments.  If I am starting to feel low, I like to eat a meal.  Sometimes, I feel so hungry that it takes a while for the food to catch the low back up.  Then, when I am done, I feel sick.  I hate lows.

From our youngest daughter: 

When I feel low, I feel bad.  My head hurts and my belly hurts.  I know that I need to get some sugar.  I like glucose and juice too but I also like to eat LifeSaver mints or fruit snacks.  My mom buys mini Fruit by the Foot and they are sooooo good.  Sometimes, I do not mind being a little low because I love mini Fruit by the Foot. 

Symptoms of low blood sugars that the girls didn't describe, but that I tend to see as a parent are:

  • Confusion
  • Crying or whining
  • Sunken eyes or dark circles
  • Headaches
  • Vision strain
  • Overly quiet or introverted
  • Laying down with little energy

Whenever my kids start displaying these symptoms, we immediately check blood glucose.  If the girls are not near a blood sugar meter or we can't access one due to whatever we are doing (tends to happen in grocery check out lanes just as I am paying the cashier), than I have them eat a fast acting glucose tab immediately.  We can always test later.   In our family, it is "better safe than sorry".

Here are a few awesome (and portable) low blood sugar foods.

Glucose Tabs - did you know that different stores carry different flavors?  Currently enjoying strawberry and watermelon found at Target Stores.  Giant Smarties have the same fast acting sugar and arrived packaged in a large roll.  These candies are the same as the Canadian version of Rockets (their smarties are actually chocolate m&m style candies).  Giant Smarties can be purchased at JoAnn Fabrics and Cracker Barrel Restaurants.

Mini 15 carb Juice Boxes- This is the perfect sized juice box.  Often, we follow it up with a granola bar, crackers and cheese or 1/2 a peanut butter sandwich.  The glucose works wonders and the protein followup snack helps to keep blood sugars stable and to prevent a secondary crash.

Fun Size Skittles- Because skittles are a bit more durable and still provide a fast acting sugar, we tend to pack these in places that are exposed to heat and cold.  The car glove box, my purse and the girl's backpacks. 

Shelf Stable Individual Milk Boxes - For middle of the night moderate lows (anything between 80-120 bg), for our daughters, the combination of sugar and protein offers a perfect "fix" for stabilizing low blood sugars while they sleep.  An added bonus is the bone strengthening calcium... after all, our kids are literally growing in their sleep! 

Seasonal Holiday Candy - This is one of the best moments for providing our daughters with a bit of fun during a rather horrible part of type 1 diabetes.  When they have a low, we try to keep on hand a seasonal type of candy to help put a smile on their face.  Currently, we have a dish of conversation hearts for Valentine's Day, but we have also used candy canes at Christmas, jelly beans at Easter and pretty much everything you can think of during the Halloween bonanza!  Kids first, diabetes second

With all of these ideas, there are so many more wonderful ones that I am sure I have missed. 

How do you treat a low blood sugar in your house?

Saturday, January 21, 2012

Conversing Through Candy (Random Thoughts)

Why can't these delicious candies with oh so cute sayings,

Say something like this?

Wouldn't that be nice?

Tuesday, January 17, 2012

And Then There Were Three...

At our house a few days ago,

Three little girls had a delicious taco fiesta, played with Barbies and made pom-pom scarves for their American Girl dolls. 

Image Detail
Three little girls danced to Justin Beiber and decided that Nick Jonas is still cute and that they really want to be just like Taylor Switft.


johnny depp mad hatter Tim Burtons Alice In Wonderland

Three little girls settled down around midnight, snuggled together on pink pillows in pjs that were warm and soft and watched Alice in Wonderland - because the Johnny Depp version qualified as a bit scary - and showed off how brave they could be.

Three little girls finally slept and at 3:00 a.m., while their mama for real and for the night, crept in and poked three of their fingers to check blood sugars.

And again at 6:00 a.m..

And one last time at 9:00 a.m.

And all through the night slept with one watchful eye and one listening ear in case anyone should need her.

Because yes, all three little girls had type 1 diabetes.

Three little girls knew not and continued to softly snore through the night and into the late morning hours, without a worry or a care of type 1 diabetes and with only dreams of a magically fun time.


And one mama was so delighted to be able to have provided a perfect night without any interference from type 1 diabetes, that she didn't mind her exhaustion the next day.

Three little girls are already planning their next sleepover adventure.

And one mama couldn't be happier!

Monday, January 16, 2012

Love Is In The Air! (What Is Your Passion?)

As much as I write about type 1 diabetes, you would think that was all I lived and breathed.  And for much of my daily life, it is.  However, there is this little part of me that needs to escape and seek out relaxation.  Just as recognize the need for rest and relaxation in my own little girls -- believe me, they need a break from type 1 diabetes too  -- I would be foolish to ignore my own health and happiness. 

Kind along the lines of...

What makes me relax most are my hobbies.  To me, there is nothing more fun (well, of course spending time with my family is always at the top of the list) than decorating, thrifting and making craft projects for our home and for our two little girls.  I love simple and quick projects that take very little in terms of resources such as time, money or thought. 

Recently, after subscribing to Pinterest, I discovered a group of like minded people who also adore the idea of creating something out of nothing.  Along with other families living with type 1 diabetes, these are my kind of people.  The kind that dream up amazingly fresh and new ideas.  I am very inspired by the beautiful pictures and clever ideas contained on the website.  After day-dreaming of what I could/can do, I instantly felt more relaxed and less troubled.   

And because I am me, I had to make up a type 1 diabetes board of things that the Naturally Sweet Sisters love. 

Which kind of goes along with this thought...

"You can take the girl out of the diabetes but you can't take the diabetes out of the girl"

Having a hobby allows me to let go of the diabetes monster (albeit for a short while) and reinvigorate that passion that makes me tick.  My identity needs to be more than just Artificial Pancreas CEO, otherwise I suspect I would fail miserably at that most important of important jobs.

What is your passion and do you take the time to nurture YOU?

Any by the way, did you know a Dum-Dum pop is just a mere 6 carbs? 

Saturday, January 14, 2012

It's The Final Countdown (Or Carbs Count!)

Counting carbohydrates.  Many of us dealing with type 1 diabetes have to do it.  It is critical in dispensing the proper ratio of insulin to food when your are not using a structured food exchange program.

Over the years, I have collected an assortment of tried and true methods of counting carbohydrates. 

My favorite way to count carbs is through the use of measuring cups.  It is my go-to resource for recipes, snacks, and treats.  In our family if someone wants a bowl of cereal, then they simply measure out the amount they want (mostly at this age, it is one cup servings), then review the amount of carbohydrates on the box and calculate the number of carbohydrates.  Adding milk?  Then, pour a cup of milk into the cup and add to the cereal bowl.  Easy-peasy! 

Notice the cute Disney World measuring cups?  On our last vacation, this is what I picked as my souvenir from the trip.  It has made me happy every day since.  Who says measuring cups can't be cute?

Next up, is our food scale.  We actually have a few of these types of scales floating around the house.  This particular brand was provided to us in exchange for participating in a type 1 diabetes research study for food and nutrition.  At one point, this was our go-to item for measuring food and counting carbs.  As our children have gotten older, we find for our family that part of good control is teaching them ways to manage their own care.  This is especially true as the girls are away from home the majority of the week in school and extra-curricular activities. 

I have many friends that continue to use this method as they find it to be most accurate for their families.  Recently asking why one friend perferred this method, she answered that it became very clear to her that a cup of strawberries did not provide enough information.  Were the strawberries diced?  How much air was in the cup and were the stems on or off?  Having a food scale helped to her eliminate those questions which were especially important in dosing a insulin-sensitive toddler. 

If you haven't picked up a copy, I highly recommend The Calorie King Fat and Carbohydrate Counting Guide.  By far, this is our favorite reference book for identifying carbohydrates in foods while on the go.  This is not just for fast food either.  The guide is a comprehensive resource for virtually all foods.  I keep one in my purse, one in the pantry, one in the car and the kids have them in their classroom diabetes supply boxes.  Having a scale or measuring cups in the classroom or on sleepovers is a bit tedious, but the book makes it easy to help figure what "Suzie's birthday treat" is.

Of course, there is always the option of looking at labels.  Quite a bit of our crackers, breads, granola bars, and of course cereal is much easier because it simply has a label.  After years of reading these, each of us has memorized that each Ritz cracker has 2 grams of carbohydrates (we round down unless eating the full serving).  But one word of caution, switching brands often means switching carbs.  Not all crackers are created equal. 

Here are a few other tips for counting carbs and not losing your mind in the process.

1.)  If trying out a new recipe, be sure to write out the carbs right on the recipe card or inside the recipe book.  This will save you time in re-calculating if your family decides that your new recipe is the best ever! In addition, consider typing a list of all of your favorite foods and hanging it somewhere that is easy to refer too.  When we needed 15 gram carbohydrates or less snacks, I wrote up a list of everything that was free or low carb AND things that my kids would eat.  It helped so much.   

2.)  Purchase beverage glasses in 8 ounce size.  Ikea makes a great set of colorful plastic cups, bowls and plates.  The cups hold one 8 oz glass of milk and the bowls hold exactly 1 cup of cereal.  That makes our morning time much more enjoyable. 

3.)  If you are going to the movie theater any time soon, considering taking along the Ikea plastic bowl or a brown paper bag that you can mark with a fill-too line which is pre-measured.  You can dispose of the bag when the movie is over or if you brought along the bowl, you can just dust it off and put it into your purse.

4.)  After grocery shopping, pull out your trusty Sharpe marker and write all of the carb counts on the items.  Applesauce and yogurt are two items that do not always have carbs printed on the individual container.   Consider taking time to baggie individual servings of crackers, raisins, potato chips, carrots, strawberries, grapes, etc.,  and using your marker to identify the amount of carbs for each bag.  Your kids will love being empowered to know how many carbs they are eating and you will be thankful for the time savings down the road. 

5.)  Get your kids cooking!  Part of learning to count carbs is letting them touch the food, do the measuring and the mathematics.  One very nice part of having to count carbs is that our children with type 1 diabetes tend to excel at math.  Maybe it is coincidence, but I tend to think it is all of that adding, subtracting, multiplying and even 'guess'estimating!

Happy Carbing!

Wednesday, January 11, 2012

Her Speech (When Kids Talk To Kids)

My oldest daughter is speaking to an elementary class on the topic of type 1 diabetes today. 

One of the students that was diagnosed over Christmas break just returned for the first time to school.  Besides his backpack, he also had to bring along his brand new type 1 diabetes diagnosis.  To help ease his transition, the principal and teacher thought it might be nice to have an alumnus of the school (ironically, one whom also had been diagnosed with type 1 diabetes while attending there) speak to the entire classroom about what having type 1 diabetes means.  The hope is that it teaches the rest of the students to not fear type 1 diabetes but to embrace it and ultimately, go back to just seeing their classmate as a regular little kid.

Here is oldest daughter's speech, which I can proudly say was written all by herself.  As a ten year old, her grasp is rather amazing and I am in awe of her grace, acceptance and courage to talk about a topic which is so personal.  Instead of fearing her type 1 diabetes, she has embraced it and is willing to show the world that she is just like everyone else... one cool kid!

In her words....

Does anyone know what Nick Jonas from the Jonas Brothers, Jay Cutler from the Chicago Bears, Rock Star Bret Michaels and Crystal Bowersox from American Idol has in common with me?
Well, if you can’t guess… it is Type 1 Diabetes!
My name is xxxxxxxx and yes, I have type 1 diabetes.  I have had it since I was 8 years old!
When you have type 1 diabetes that means that your body can not turn the extra sugar in your body into the energy that your body needs!   Type 1 diabetes is an auto immune disease where your pancreas stops working by itself and you have to use an insulin pump or shots as your pancreas.  A pump looks like a phone or an iPod, but it is your pancreas outside of your body.  Shots are needles that can be filled with insulin too.  Insulin is a hormone that causes cells in the body to take up sugar from the blood.  Getting insulin in a shot or a pump does not hurt but you have to do it every day and whenever you eat, so that you can have lots of energy and can keep your body running smoothly.
There is another thing about type 1 diabetes and that is that you have to poke your finger to get tested.  This is called checking your blood sugar.  When you have poked your finger then you apply the blood droplet on to a tester strip (it looks like a cell phone with a pokey)! Once you have done that, your number will show up on the screen.  The blood glucose that you want is anywhere from 80 to 200 is good but I’m not saying that 201 is bad!  If it is too low, I eat something and if it is too high, I give myself some more insulin.
You can NOT do anything to get diabetes. It just happens and no one can catch it.  Scientists think it may happen because of our genetics and maybe from the environment too.  But no one knows for sure.  The funny thing is that I have type 1 diabetes and my sister has type 1 diabetes and my 2 friends have type 1 diabetes and my neighbor has type 1 diabetes … so I guess I’m trying to say  that type 1 diabetes isn’t that rare! 
Lastly just because you have type 1 diabetes doesn’t mean that it will stop you from doing what you love.  You can do ANYTHING you want with diabetes!  I play soccer, I hang out with my friends, I can eat anything that I want and I even go to sleep-over camp! 
Just like you, someone who has type 1 diabetes is pretty cool. 

If you have any questions please ask me now!


Monday, January 9, 2012

Naturally Sweet Weekend

It was one of those weekends that soothed our souls and gave us the pleasure of enjoying kids first, diabetes second.

After a day of doing this.

We came home and did this.

And after, enjoyed a few of these.

While type 1 diabetes just did this.

And this.

Which meant that we could do more of this.

Wishing you a few of those days too!

Sunday, January 8, 2012

Paying It Forward (Yes, We Wear The Same Shoes)

Pretty much (at least I suspect), anyone who is reading this blog is entwined by the thread of type 1 diabetes.

This is a unique set of  individuals (or as I like to think of as friends) that may live very different lifestyles or have different religious views or perhaps are from an entirely different culture.  Almost entirely outward, we are unidentifiable - unless you happen to catch one of us in the act of testing blood sugar!

Aside from that outward appearance, we are exactly the same.  All of us are living with type 1 diabetes.

Each of us reads or "listens" to what we are saying and try in our own way to offer a cyber hug, sympathy or maybe a bit of advice to let them know that we too, understand.  The best moments are when I read or hear about a victory or a met goal.  Then I do a little happy dance and try to send back a high-five.  With the diabetes monster always lurking, I (and everyone else in the DOC) know how precious those moments are and how they should be celebrated. 

Mostly though, the rest of the world does not get it.

Ever had a blank stare from someone after spewing diabetes train of thought? 

"Yippee!  She is 130 and came down!  Now she can eat that cake in style!" 

(Insert blank look from passerby and crickets chirping.)

The hardest part is hearing of or seeing raw emotion from a family just diagnosed.  In our local community, three new families were recently presented with this challenge.  The children are ages 5, 9 and 13.  Each beautiful and remarkable little people, whom are now facing adversity much beyond their young years.  A new diagnosis is overwhelming, sad and painful - both physically and emotionally.  When I think back to our daughters' diagnosis,  I remember that same time frame and the feeling of a surreal existence.  Life had changed irrevocably and we all felt helpless against it.

Time does heal wounds and before long, we found our rhythm and eventually became the Naturally Sweet Sisters.

For our family, having friends in the DOC helped with the healing process and to this day, I try to pay it forward by offering the same comfort and support. 

Here are five tips to help new families coping with new type 1 diabetes diagnosis and if any are reading this... let me extend a big warm hug.... it will get easier, I promise!

1.)  Take time to nurture yourself.  Go for a walk, have a cry, write it down, call a friend, or shop.  Whatever it is that will help you find a moment to grieve and forgive yourself of what-ifs. 

2.)  Recognize and believe that Type 1 Diabetes is not your fault.  You did not cause this nor did any particular thing that you may have thought you have done in the past or present.  Type 1 diabetes is an auto-immune response for which there is no known origin.  If you are thinking that it happened because you fertilized your lawn or drank bottled water or didn't breast-feed, this is simply NOT true. 

3.)  Set some goals and celebrate the little victories.  Maybe the goal is to have your child have their blood sugar checked without tears.  The first day that happens, make a big deal out of it.  Put on some music, dance around and be silly.  Part of adapting to this strange, new world is learning to find joy again.  Dancing with your child is guaranteed to bring out the joy through big belly laughs and silly dance moves.

4.)  Cancel your plans.  This is the time to really take inventory of all the events that you feel like you "have" to go to.  If it isn't critical, cancel it.  Family and friends will understand.  If they don't, they will learn to deal with it.  Type 1 diabetes can be exhausting and the last thing you need is to feel obligated to attend a housewares party or the neighbor's cousin's best friend's wedding. 

5.)  Find a diabetes support group.  Whether this is online or in person, find a person (or people) that are in the 'biz' of type 1 diabetes.  These people will get you in a way that the outside world does not.  Hearing someone use the words "bolus", "blood sugar", "high" in a new way will instantly make you feel better.  Much like learning to deal with type 1 diabetes feels like being in a foreign country, you need friends that speak your language.

And if you are a seasoned pro, please consider paying it forward too.  Reach out to a new family and help them learn to embrace all that there is about type 1 diabetes.  There is nothing more rewarding than helping others.