From The Girls: What we want you to know about type 1 diabetes

What is the last thing that you think about before you go to bed at night?

Oldest daughter:  I go through a check list in my head and I think of everything that I have to do.  I brushed my teeth, I got tested, I had a snack, I dosed, I packed my homework.  Yes.  That is a huge one.  Homework.

Youngest daughter:  I make sure that I have all of my stuffed animals and then well, I don't know.  I go to sleep.

What is the first thing that you about when you wake up in the morning?

Oldest daughter:  Another day of school!  And then I have to think about what I am going to wear and think about what day it is.  If it is Monday, I am going to the computer to hang out and I can be comfy.  But on Wednesdays, I have Yoga.  On Friday, I like to wear jeans and look nice.

Youngest daughter:  I think about what is for breakfast and then I think about what I am going to wear.

What is the first thing that you do when you get to school?

Oldest daughter:  I unpack my backpack and make sure that I have my social studies and science journals.  Then I put my tester and phone and my purse and my lunch box in the backroom (the diabetes lounge).

Youngest daughter:  I grab my homework and stick it in the bin.  Then I go to my desk and take out my pencil and do my morning work.

When do you think about diabetes?

Oldest daughter:  I have to think about it as soon as I get to school because if I forget something, than I have to text you (mom) with what I need.

Youngest daughter:  When I have my snack and then I think of when Miss D. (aide) is going to come in.  I worry that she is going to be late.

What do you think your friends think about diabetes?

Oldest daughter:  Oh wow.  Um.  Go to (my sister first).

Youngest daughter:  My friends think, "What is that thing on your pouch?  What is that tubing or string?" They always ask me that. 

Oldest daughter:  (Laughing)  They ask me "Who won?"  We play a game with my friends that have diabetes and try to figure out who is closest to 150.  My friends always ask me who won!

Does having diabetes bug you?

Oldest daughter:  No.  I think it doesn't really define me.  I think some people think it is such a big issue.  Like, so you are a diabetic?  Yes, so?  I don't care.

Youngest daughter:  No, well, a little bit.  Because I do not like having people ask me all these weird questions.  Because they should really ask their parents. 

If you could change one thing about yourself, what would it be?

Oldest daughter:  I wouldn't change anything.  I like who I am.

Youngest daughter:  Yeah.  I like me too.

February 2012: Advocating

From the DSMA Website

Recently, the DSMA posted these thought provoking questions.  Since this is not a test and pretty much every answer other than "I dunno" is appropriate, I thought why not sit down and take a few moments to answer.

After all, much of my thoughts towards 2012 center around information sharing within the DOC.  It is my thought as a parent of Naturally Sweet Sisters, that this is the least I can do to advocate the need to further research type 1 diabetes, ultimately finding better treatments, technology and a cure.

We have to speak up and talk about what we need or nothing will ever change.


Q1. How do you get information about innovations in diabetes care?

Our family is active within the DOC and our city/state.  We participate in ADA and JDRF events like the Diabetes Health Expo, the Walk to Cure Diabetes and diabetes conventions.  We talk to suppliers, doctors and patient families.  Mostly we ask lots of questions!

Q2. How do you know when a new device comes on market?

I follow several diabetes blogs on the internet as well as subscribe to various medical magazines.  If I inadvertently miss a release, because we are connected through the DOC, someone often sends us a link for more information. 

Q3.What are some of the things you do as a PWD or a Parent of a CWD to share your needs with the industry?

As a Parent of a CWD, I speak up.  Part of being a responsible parent is advocating for your children.  I am their voice within the community to ask questions and to implement any better strategies for managing type 1 diabetes.  I have written to our goverment at a state and local level to express concerns on the artificial pancreas, I maintain a blog that shows the world what having diabetes means and I also co-manage a support group for parents of children with type 1 diabetes.    Through all of this is information sharing and gathering. 

Q4. Do you think your concerns are addressed in a timely manner?

No.  We have been living with type 1 diabetes for five years.  Little has changed except for finding our voices.  The need for better technology is still ongoing.  I can't even fathom a cure at this point.

Q5. Do you know how to find diabetes issues that the FDA is seeking comment from the public? do you comment?

Yes and I do respond. 

Q6. Do you advocate for PWD with the government? FDA, Congress etc.

Yes and we have received letters in return acknowledging our requests.  Some have been form letters obviously sent by aides, such as Debbie Stabenow, but we received one letter last month from Carl Levin that actually responded with his own plan on obtaining better care for PWDs.

Q7. What topics would you like to see discussed? What would you like to see more of?

Better technology updates with real life release dates. 

Remember to Be A Member!

Greeting to all of our friends out there in 'cyber-type-1-diabetes-land' or the Diabetes Online Community (DOC). 

Hello!  Hello!  Hello!




Just wanted to extend a huge thank you to everyone who is reading Naturally Sweet Sisters. 

Our little blog is growing by the day and we are so proud to be welcomed into your homes.  When we originally started this out, shortly after our first type 1 diabetes diagnosis, the topic was just too painful to write about.  So our original blog just sat there, completely forgotten.

After a few more start and stop attempts, we are finally hitting our stride - thanks to encouragement from our friends and family- to start one more time.   When we post, it is though we are talking to our friends, the ones who get it and really understand this topsy turvy life of type 1 diabetes.

All of your comments have been so kind and heartwarming and we truly appreciate them all.  Each day, we look forward to reading what you have said and to hearing that we are all in this together.

One new thing that you might see from time to time is the perspective of type 1 diabetes through the eyes of one of my daughters.  Our oldest daughter has expressed interest in conveying her thoughts in order to help other parents and kids understand each other.

We also thought it might be a great idea to offer the chance to ask questions.  If there is something that you are thinking of and want to hear another perspective, please send in your question.  We will try to use that as a blog post topic.

A quick reminder and request is to have everyone sign up to follow our blog.  You can sign up through Networked Blogs or Google Friend Connect - Both are located in the right hand sidebar of this post that you are reading.  One click and you won't miss a single post. 

With as much fun as it has been to write our blog, we are also wanting to grow our readership and hopefully, attract some sponsors, because writing is a bit of time consuming endeavor.  We want you to find the content on Naturally Sweet Sisters to be of a worthy value and we are interested in keeping our content at the highest possible standard.

And finally, for everyone interested in keeping tabs on Naturally Sweet Sisters through their e-reader, visit Naturally Sweet Sisters on Amazon Kindle.

Raising Tweens and Teens with Type 1 Diabetes

Something that I haven't tackled on this blog was the advancing age of my oldest daughter. 

While that may make her sound as those she is entering her twilight years, in reality, she is entering her tween to teen years.  For the first time since babyhood, every single part of her body is experiencing rapid growth and her insulin needs have increased almost weekly for the past year.  We often ask her jokingly, if she is drinking her insulin.

Last week, oldest daughter asked to attend a field trip with the rest of the class.  And like the majority of her classmates, she asked if I could stay home and not chaperon. 

My first reaction was one of understanding and sympathy.  I can clearly remember my feelings of wanting independence at the same age.  Of course, she wanted to be on her own with her friends and without mom.  It is a universal request at some point... otherwise if she didn't, we might one day be harboring a 40 year-old recluse in our basement. 

My second gut reaction, was to wonder how in the world we could make it happen.  Unlike my own mother who could simply drop me off and drive away, I needed a plan that included appropriate blood sugar checks, text messages with blood glucose numbers, how to handle snack foods and to ensure that she would dose her insulin properly and the ultimate worry.... what would happen if she went so low that she couldn't do anything.

That is a lot of responsibility for any adult and even more for a child.

So why did I go through that?  Why not just go on the field trip and watch her carefully myself despite her protests?

Kids first, diabetes second.

One day, this little girl is going to grow up.  If I keep swooping in at every uncomfortable turn in the road, then she will never learn the way to become fully independent.  Type 1 diabetes will not always be "mine" to manage and over the next 7 years, we will need to go through these situations to build her up for the ultimate test of independence; college.

After multiple discussions between the two of us, our plan included oldest daughter to test her blood glucose before leaving school, to carry a brand new purse of her liking with her cell phone (so that she wasn't embarrassed by carrying supplies), candy, a blood glucose meter, (her teacher carried a blood glucose meter, glucose tabs and glucagon as well),  to check her blood sugar approximately halfway through the field trip and to text me with her numbers as well as anything she might be eating so that we could look at the carbohydrate counts together.

It was a tall order but we both felt confident that she could handle it.  I also explained that by carefully following our directions, that she was opening the door a little bit more to new independent opportunities that might arise.  In reverse, by not following our plan, she was also closing the door.

She seemed really excited by that idea.  Her personal goal is to one day walk around our mall with a group of girlfriends.  Apparently, our babysitter did that and oldest daughter is thrilled to think that could be a possibility!

I also planned a shopping trip that put me right down the road from where she was for the two hours she attended her field trip.  We both felt comforted that if something did go terribly wrong, then I could be there in just a few minutes. 

And it worked beautifully.  Oldest daughter went on her field trip and enjoyed the company of her friends without mom hanging around.  She giggled and laughed later that night in telling me about her escapades. 

Which made us both feel so happy and proud that we didn't let type 1 diabetes stop her. 

Friday Funnies - 2/24

Fat Tuesday Factoid - Paczki Carbs

Just in case anyone is going to be eating a paczki (pronounced punch-key) to celebrate Mardi Gras or Fat Tuesday, here is a list of ingredients, including carbohydrates from LiveStrong.

Nutrition Facts

Serving Size: 1 Paczki

Amount per Serving

Calories 329

Calories from Fat 102.6

% Daily Value *

Total Fat 11.4g

17%

Saturated Fat 6.2g

31%

Cholesterol 153mg

51%

Sodium 172mg

7%

Total Carbohydrate 48.8g

16%

Dietary Fiber 1.3g

5%

Sugars 18.6g

 

Protein 5.5g

11%

Est. Percent of Calories from:

Fat

32.1%

Carbs

61%

Protein

6.9%

* Percent Daily Values are based on a 2,000 calorie diet. Your daily values may be higher or lower depending on your calories needs.

Mesidones (Or What In The World Is that?)

Not my child's tooth - but similar

Adding to the list of spectacularly awesome and rare things that our family has been diagnosed with, here comes the newest and most interesting!

A mesidone!

Have no idea what that is?

How about a few clues.

It is shiny, white and sharp. It is also protruding from the roof of one youngest daughter's mouth.

Yes, my friends.  It is a extra tooth.

And this one is coming straight from the roof of her mouth, behind her already erupted adult teeth.

Let me just preface this by saying that we are regulars at the dentist.  We have been going to the same guy for almost 20 years and he knows our family (almost) as closely as he does his own.  We went before we were married, after through two healthy pregnancys and throughout three moves to different towns.  In fact, one of his hygenists was a former neighbor at our second home and another was the coach of our oldest daughter's soccer team at this home.  No matter where we are, we have stayed close to this particular dentist. We trust him and that is as rare as everything we have been through.

Let me explain.

When our oldest daughter was born, her first set of baby teeth erupted, lacking enamel.  This is known as hypoplasia.  This rare condition is not exactly worrisome but does cause extra concern with the whiteness and sensitivity of her teeth.  As the adult teeth have come in, several also display hypoplasia.  Since we have been dealing with this for so long, our dentist has been great at maintaining her smile by adding composite material to strengthen the teeth.  When she is older, she will be a wonderful candidate for veneers and most likely, will forget that she ever had this issue.  Like type 1 diabetes, doctors suspect a combination of unfortunate genetics and possible environmental factors.  Unlike type 1 diabetes, hypoplasia can be treated and fixed.

In elementary school, our oldest daughter had an unfortunate playground accident which resulted in breaking her two front teeth.  Her beautiful, ADULT, front teeth.  Once again, we rushed to the dentist and after a referral to an oral surgeon for two root canals, we started the bonding process on the remaining pieces of tooth.  Our daughter's current smile is imperfect but adorable and will last until the rest of her adult teeth erupt and until we can start her on permenant restoration.

As you can see, it has been a long go with our dentist. 

Now here we are today. 

With one bonus tooth.  And the irony is that this little guy is extra white and shiny.  How perfect he could have been in the right child's mouth.  Instead, our youngest daughter is now facing her own oral surgery for removal and will be fully sedated.

And once again, we will be monitoring her blood sugars, asking her to fast the night before and hovering over that CGM while she is under.

Three surgeries in six months for two children. 

We need a vacation.

Enough said.

Friday Funnies - 2/17

The Never Ending Story (or Go Away Germs!)




Illness.

Sickness.

Colds.

Flu.

Germs.

Bugs.

Punky.

Under the weather.

Not herself.


OK, so a lot of words and phrases but pretty much all of them sum up what we have dealt with this winter.  The never ending story of a compromised immune system. 

And.it.makes.me.crazy!

Right now, the house smells like a combination of clean laundry, Lysol, and fresh (cold) air blowing in from the front windows.  I am pulling out every last trick in the book to rid our house of whatever it is that is causing my girls to feel poorly.

And I know that we are not alone. 

Almost every family has been dealing with this list of non-specific symptoms that seem to be endlessly lining up for rotation into homes. 

Except for our families, the ones that live with type 1 diabetes, this sort of never ending story makes life 10 million times harder.  Every illness has to filter through the blood glucose; causing highs and lows of extreme proportions. 

At night, I can't just turn on a humidifier and hope for the best.  I have to go back in every few hours to re-test blood sugars and make sure my kids are still breathing. 

So that makes for another, normally healthy immune system, to become very compromised.  No wonder that my dear husband phoned me from work to say that now he doesn't feel good.

And he understands even more why I say back into the phone, "please stay there."

Happy Valentine's Day From Naturally Sweet Sisters

If you think it has been quiet over here at Naturally Sweet Sisters, you are right.

We gave out 96 of these today.

Which means that we earned the right to indulge in one of these.



(Thank you Papa John's!)

Here is hoping that you have a relaxing night to enjoy too!

Advocates, Coaches and Mentors - Oh My!

It is official!


I completed my   New Family Mentor Training!  Now I am officially an Advocate, Family Team Coach and a New Family Mentor. 


And I am feeling like the luckiest lady around.


From the JDRF website,

"Whether newly diagnosed or living with diabetes for many years, individuals and families coping with the challenges of type 1 diabetes can often use support.  The JDRF Mentor Program matches those needing support with a mentor who has been specially trained to be available and supportive.  JDRF mentors have been living with type 1 diabetes for some time and are voices of experience and hope for those living with type 1 diabetes."


What the above paragraph doesn't explain is how becoming the point person of response actually affects the trained Mentor.

For me, it is part of the circle of giving and advocating.  Just as my friends around the DOC have helped myself and the Naturally Sweet Sisters, I in turn, want to pay it forward and give back some of that same kindness.  Whether it is a phone call, an email or meeting to share a cup of coffee, just to let newly diagnosed families feel a moment of kinship and that no one is alone and yes, there are others that really do understand the life of type 1 diabetes.

As hard as it may seem in the beginnning, we are all in this together and are here to support each other along the way!

And I am sure feeling like lucky one today.  What a gift to be able to give back.

Friday Funnies - 2/10

Stay At Home Mom (or What? You Are Actually Busy?)




Yes, I am a stay-at-home mom.

I am also a wife, artificial pancreas x2, blogger, volunteer, Diabetes advocate, homework helper, Valentine's Day card maker,  school play costume creator, ballet mom, soccer mom, chauffeur, chef, laundress, cleaning lady, therapist, Google M.D., arts and crafts specialist, etc., etc.

You get the point.

There is however, one thing that I am not.

I am not without a schedule.

Everything in my life revolves around schedules.  I look at that clock at least fifty times in a day.  My calendar is my devotional material.  My cell phone is my life line.

Every second, every minute and every hour for each day is accounted for. 

Between the routine blood sugar checks, breakfast, lunch, dinner and snack boluses; I am also fitting in routine maintenance of all of our medical equipment.

Blood glucose strips refilled?  Check!

Meter batteries charged?  Check!

Insulin in pumps?  Check!

Dexcom calibrated?  Check!

And all of that is times two.  Which I know YOU get... the rest of the world, not so much.

So this week it happened.  I got a little cranky.  OK, two emails and several phone calls worth of cranky.  Yes, ME, one who is known to be fairly upbeat and happy.  Which I still am.  Except.

Except for when someone tells me to go to this place and pick up this.  When I do, I am then told to go back and get this and then this.  And one more time for more.

And then, here is where I get a little grumpy.

When I am told that none of that is going to help and that I should have never gotten any of that in the first place.

Confused?

I know.  I was too.

And mad.

I wasted all of that precious time.  The one thing that I just do not have.  I can't make it, buy it or borrow it.  I am even too busy to lose it.

Because I think being so busy all of the time and having a head full of things that HAVE to be done with a cheerful attitude make for a whole lot of savings of grumpy feelings.  So when they come out, they really come out. 

Which isn't in the least bit helpful. 



 So I have to figure out how to get those grumpy feelings out when they start to happen instead of placing them into a random savings account to be unleashed on an innocent (kinda) person.

It is hard.  All I have come up with thus far is to start exercising.  After all, can I be grumpy if I look hot? 

Sugar Free Slurpees



On a hot day, one fun cool, delicious and surprisingly carb free treat that our family enjoys is a 7-11 Slurpee.

Surprising isn't it?

Did I mention that these are sugar free versions of the Slurpee?

While our family could certainly choose to purchase a regular Slurpee, counting carbohydrates can be difficult and numerous... about as much as in a regular can of soda. 

We stumbled onto these one year shortly after our youngest daughter's diagnosis of Type 1 Diabetes in 2006.  As we walked to the back of the store to select water bottles, my oldest daughter's eye caught the shimmer of the Crystal Light label on the Slurpee machine.  In the recent weeks of post diagnosis, Crystal Light water flavoring packets had surged to a favorite within our household and she was able to instantly recognize one of our new favorite treats. 

Certainly, it seemed like a simple, yet brilliant idea to freeze the Crystal Light and create Slurpees... why hadn't we thought of that before?

And even better... here was a store promoting and selling the deliciousness!

Whoo-Hoo!

Instantly, we were hooked. 

Sugar Free Slurpees that are flavored with Crystal Light include the following flavors: 

• Lemonade
• Lemon-Lime
• Orange Pineapple Ice

     Peach Mango

• Raspberry Ice

Strawberry Kiwi

     Strawberry Banana

• Passionfruit
• Berry Pomegranate
• Cherry Limeade
• Tangerine Lime
• Apple Mango

        Blueberry Splash

What is nice is that this is a treat that isn't obviously different from any of the other flavors.  The only difference is the nutritional information.  Quite often, if we drive over with friends, I notice that all of the kids tend to actually choose the Crystal Light flavors over the regular Coke/Mountain Dew/full sugar versions - not even realizing that they are choosing an item that is sugar free.  I think the Crystal Light versions are just that more enticing and quite often, tastier.

Here is a nutritional label from the Crystal Light 8 oz cup of the Strawberry Kiwi Slurpee.

I have had discussions with counting carbohydrates on Slurpees with various families living with Type 1 Diabetes and we all tend to do it differently.  Our family considers the Slurpees to be "free" treats as do we the Crystal Light drink packets, so we do not bolus for the beverages.  Certainly, you should consult your  endocrinologist to see what works best for your family needs before choosing to bolus or not bolus for a Slurpee.  For whatever reason, it appears that this is one area that is different for each individual.

I have heard that not all stores were carrying the Crystal Light Slurpees.  If this is the case, stop by your 7-Eleven and make a suggestion.  Making change is sometimes making the smallest things happen, even if it is only a sugar free Slurpee.

And by the way, 7-Eleven didn't endorse this post.  I just had a Slurpee with the girls this weekend and wondered how many more people would like to know about another hidden gem for families living with type 1 diabetes.

Enjoy!!!!

Super Bowl Party - Naturally Sweet Sisters Style

Today is one of those crazy days where food has become the center focus and the actual entertainment is secondary.   You might slightly disagree and think the commercials are front and center, but while watching them, most people are also eating.

And eating.

And eating.

Oh yes, watching a bit of football but still eating.

Our home is not really that much different.  We planned the day around the scheduled kick-off and the girls have made a ranking sheet for the best commericals and another sheet to record touchdowns and best end-zone dance moves. 

And yes, we will be doing some of that eating too. 

But conveniently, this night is under our control with items carefully selected for a fun night with little interference from highs and lows of eating foods that are difficult to digest. 

And while we will have a night that is "kids first, diabetes second", we will do it in a way that focuses more on the real entertainment (spending time as a family) and less on the food seen in those commercials.

With a little Nerds Rope thrown in, because that it is the one thing that our two girls wanted to try since seeing it back in December at a friend's house. 

And waiting for the right moment also makes trying something new a whole lot more exciting.

Because is the Superbowl that exciting? 

Um.... well,

Happy Superbowl Sunday from our NaturallySweetSisters...  and hoping you have an exciting night too:)

Friday Funnies - 2/3

Being Blessed (or is Bitter Better?)

Sometimes, I am longing to whine and shout "IT'S NOT FAIR!"

Even though I have worked steadfastly to teach my children to say nothing of the sort.

Because what is "fair" anyway?

Everybody has something.

I force myself to ponder that thought while sipping my chai latte and breathing slowly, reviewing what just happened.  As the tick of my heart slows, my shaking hands steady.  Feeling more human.  More calm.  More me. 

I can't change any of this.  I can't reverse our life.  Or fast forward. 

This is it. 

These are the cards that we were dealt.  For better or for worse.  This is our life.

I accept this.

But still, I have moments where I feel sad, angry and depressed.   Because this really is not FAIR!

So I grumble these words under my breathe. 

Stupid type 1 diabetes. 

You can't stop us from living and from enjoying and from conquering.

I will douse you with food (or insulin depending on the moment).  And if you keep erupting, I will add more.  The only fire that is going to burn is the one set with determination to not let you stop my children from doing the things that they love.

Even if the moment that they love is doing nothing more than having friends over to play Barbies.

I make a game out of it and bring snacks to the room.  Delighting all with the idea of having a picnic in a bedroom on the carpet.  No one is the wiser to my battle within or realizes the significance of the number on the meter that I so carefully flipped over.  I do not want this to damper the moment.  I do not want to explain what is happening and why we must act with urgency. Or to inadvertently isolate my daughter by bringing type 1 diabetes back into the picture - even though, truly, it never leaves.

All I want is for our child to have a fun day with her friends.

Our youngest slowly perks back up and starts to giggle again.  Almost instantly forgetting how crappy she must have just felt.  Her friends join in and soon the room is full of laughter over the Ken doll wearing a mu mu.

And for another day, I conquer the diabetes monster along with the residual anxiety that remains present from dueling type 1 diabetes...

every second, every minute, every hour and every day.