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Category Archives: type 1 diabetes

4 Years Is Enough Time to Make A Difference

Today, December 20 2014, marks four years since my daughter was diagnosed with type one diabetes. Oh how far we’ve come! And oh what we have learned!

For those of you whose children are newly diagnosed and even those still struggling after years, let me share my daughter’s experience.

2,103,796 minutes

2,103,796 minutes

In 2010, she was a daughter, a sister, a granddaughter, a niece, a cousin, a student, a friend, a leader.  Also, an athlete, a straight A student, a musician…and a pre-teen. And as I look at the picture on the left, I see she was thin and tired.

In 2014, she is a daughter, a sister, a granddaughter, a niece, a cousin, a student, a friend, a leader.  Also, an athlete, a straight A Honor student, a musician….and a high school freshman…and an advocate. And this year’s picture, shows a happy, vibrant, healthy young woman.

Is she perfect?  No.  She has been known to forget to bolus for lunch.  She has walked out the door without test strips.  She has underbolused and overbolused.  She is guilty of the “sigh-roll”–the combination eye roll with sigh for emphasis so many teens are guilty of doing.  She thinks I am a “diabetes dork” for doing awareness activities in November.

But her endo is happy with her a1cs.  Her dietitian is happy with her eating habits.  Her teachers are happy with her in-school management of her Type 1.  I am happy that she is a good kid who is confident of who she is and true to her values. I am proud that she has been in charge of each of our four JDRF walk teams..she sets up the page, she sends out the emails, she hounds people over and over which has led to her getting a Golden Sneaker each year and raising almost $20,000 so far.  Diabetes is a part of who she is but it does not define her.

So here is what I would tell the mom I was 4 years ago, if I could:

1. It is only a number; correct and move on. Do not take bg numbers personally. You can eat exactly the same things at the same time each day and still have wonky numbers.

2. When faced with an opportunity for your child to do something, ask yourself “what would I say if diabetes wasn’t in the picture?” If the answer is yes, make a plan. Find a way.

3. Be an example to your child while still following their lead. Kids are naturally resilient–they are ready to get back to living their lives, albeit now with external insulin on board, much more quickly than we parents are. The more we encourage and allow them to be kids, the better our chances that when they do rebel, the rebellion will be minor and short-lived.  Don’t let “What’s your bg?” be the first question you ask your child when they get home from school each day.

4. Keep Calm and Carry On isn’t just a catch phrase. Don’t freak out about D things in front of your child, or where your child can overhear (or read over your shoulder). But I admit, I still gasp when my daughter’s pump falls off her waist band.

5. Your child will still be the same person after diagnosis. Overachievers will still overachieve. The lazy kids will still be lazy. Drama queens will still be drama queens. Laid back kids will still be laid back. IF you let them. (Go back to #2) Sure the pre-teen and teen years shake that up…but they do for ALL kids.

6. Diabetes is not the reason for everything that happens. Look at the whole child and not just diabetes.

7.  Don’t let technology dominate you.  She was approved for a cgm and pump 3 months after diagnosis.  These are wonderful tools—use them to make life easier, more normal–not to try to chase a flat line bg every day.  Let your child use the cgm data to confirm what their bodies are telling them.  If my daughter thinks she feels low, she looks at cgm–if the cgm confirms her feelings, she goes ahead and treats the low.  A bag of fruit snacks is not going to kill her.  If her feelings and cgm don’t match, then she confirms with bg check.  If the cgm alerts that a high is coming on, she starts drinking water to help flush out the sugars and prevent ketones.  She has learned about meal spikes and not to treat them.  But she is not looking at the cgm all the time.  She trusts it to do its job and she trusts herself to know her body.

8.  When you are having a day with diabetes is weighing heavily on you, look at those who are living with it and succeeding.  Surround yourself with positive images and remove yourself from places where negativity dwells.  It isn’t always easy to do, but you will be happier and healthier for it.

9.  Get involved in advocacy, even if your kid calls you a “diabetes dork” for doing so.  Find your niche.

10.  Don’t forget to take care of yourself.  Marriages and other children sometimes suffer because we focus so much on diabetes.

 

We can do this…because we MUST do this.  The true test of our character is not how we handle things when life is easy, but how we manage the challenges.

 

Happy 4th Diaversary to my lovely daughter!

 

I am More….

The world is a all a twitter with news that Miss Idaho wore her insulin pump during the bathing suit competition. And we in the DOC are so proud of her for winning the competition and bringing Type 1 diabetes to the forefront.

But at the same time, it appears the message is lost because of a single photo. And God Bless Sierra Sandison for writing this blog post:  http://missidahoorg.blogspot.com/2014/07/i-am-more-one-of-themost-touching.html

In it,  she explains how thrilled she is to have touched so many, but wants us all to remember that we are so much more than whatever burden we bear in this life.  She has asked people with T1 D to not only #showmeyourpump but also share who you are as a person.

 

So here is my pumper

...show off her insulin pump

…when she started pumping

 

And now….

all grown  up

 

 

Still wearing her pump…sometimes it shows and sometimes it doesn’t.

 

So who is she besides a girl with a pump?

  • a daughter
  • a sister
  • a granddaughter
  • a cousin
  • a loyal friend
  • a singer
  • an actress
  • a musician
  • a volleyball player
  • a tennis player
  • a student
  • a person of Faith

And what has she done since becoming a pumper?

  • Made it to the regional science fair TWICE
  • taken the ACT as a 7th grader
  • led her volleyball team to a tournament championship
  • been named MVP and All League for volleyball
  • played 8 seasons of volleyball
  • attended volleyball and acting camps
  • been student council treasurer
  • sung numerous solos and duets/trios for school and church
  • maintained straight A’s
  • qualified for all honors courses in high school
  • raised thousands of dollars for JDRF
  • seen Luke Bryan, Lee Brice, Cole Swindell, Billy Currington, Kacey Musgraves, Lady Antebellum, and Josh Turner in concert (going to see Jason Aldean and Florida Georgia Line next)
  • met the actress Maddi Trumble, who played Mary Poppins in the National Tour and got to go backstage
  • traveled to Nashville, Walt Disney World, and the Bahamas
  • taken part in a clinical trial of the Artificial Pancreas
  • been Superhero of the month by her local JDRF chapter
  • been part of a story in Insulin Nation
  • volunteered as a counselor at Vacation Bible School
  • raised money for Ovarian Cancer
  • made money as a dogsitter
  •  learned how to sew
  • ….and so much more!

Thank you Sierra Sandison for being more than a person who wears a pump! And cheers to all who are more than they appear to be!

 

Wicked Awesome!

A shout out to Moira McCarthy and her latest book Raising Teens With Diabetes: A Parent’s Survival Guide.  If you don’t know who Moira is….you need to find out!  She is a d-mama, JDRF advocate, writer, blogger, and the list goes on and on.  I didn’t “meet” Moira until the 2012 World Diabetes Day Postcard exchange connected us.  Cyber mom that I am, I quickly checked her out on Facebook and messaged her.  That was a great day!  I can’t believe it has only been 6 months since that first contact….I feel like I have known her forever!  She is my go-to gal for anything teen parenting related.  She is my touchstone….

As I read the book, I found myself nodding my head, saying “yes, exactly” over and over again.  Her common sense approach to parenting a teen with Type 1 diabetes is so much more than a diabetes book.  Having been a high school teacher, long before becoming a parent, and parenting a teen before my T1 kiddo got there, I can honestly say that her style works for teens in general.  I don’t want to be a spoiler so I won’t say more….buy the book!

And while you are waiting for it to come, check out Moira’s blog Despite Diabetes.  You won’t be disappointed.

Moira McCarthy, you are ‘wicked awesome”!

Rebellion on the Horizon?

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A hot topic on Facebook T1 parenting support groups these days is teens (ages 13 and up) lying about their bg, whether or not they tested, not giving insulin when eating carbs etc.  Got me thinking about my perfectionist, competitive now 13 year old KC.  I cannot see her doing those things…..but other parents assure me they never dreamed their obedient, model T1 would change during the teen years either….yikes!

So I decided to ask KC what she thought about teens not testing, not giving insulin and lying about all of it to their parents.  Her reaction?

 

….

 

(long pause)

 

….

 

(eye brow raised)

 

….

 

 

“That’s stupid…..just plain stupid.”

 

I probed further.  Maybe some teens don’t want to deal with D any more and are trying to deny they have it?

 

“Like not taking insulin is going to make it go away?  That’s the dumbest thing I’ve ever heard!”

 

Well, some teens are just rebellious.

“Why would you do something that is only going to make D worse?”  That is just stupid.  I don’t understand.”

 

You might change your mind when you are 16.

 

“What?  I’m going to become stupid when I turn 16?”  (followed by eye roll of magnificent proportion)

“Like that’s really going to happen!  Stupid, it’s just stupid because it’s stupid.”

 

Okay, folks, I’ve documented it….now to see if she sticks to it!  If not, I have the proof that she said it!

 

Diabetes Blog Week 2013 Day 1 Share and Don’t Share

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Our Endo and Diabetes Clinic team are so supportive.  I appreciate that they talk directly to KC and spend time getting to know her beyond her disease.  We share all kinds of things with them…especially her successes-everything from being elected Student Council treasurer to science fair awards to volleyball MVP.  I know her Endo is proud of her hard work at maintaining an a1c that has averaged 6.5 for almost two straight years, but I also want them to know that she does that while excelling at life, as well.  So we do share!

What don’t we share…the days when veggies are forgotten!  So glad they only ask  for a three day food log!  We also don’t share the rare times when she has forgotten to bolus for a meal!  Or that we may or may not have followed FDA guidelines regarding the number of days a cgm sensor may be used….”yeah, site changes are every three days…that’s right….”  That’s my story and I’m sticking to it!

But overall, we share and share and share…and are so grateful that they take the time to listen!

#HAWMC Day 26 Worry-free Pass

wego day 26

If the genie in a bottle was giving out worry-free day passes, what day would I chose? wow……let me think on that….WOW….one day, huh?….WOW

Only one day?  Prom, graduation, college, starting career, marriage, birth of my grandchild…..only one day?  Can’t do it…maybe I’m selfish, but I want all those days to be worry-free like they are for parents who don’t have kids with chronic health issues like food allergies or Type 1 diabetes.

But I’d settle for 4 years worry-free for each of my two wonderful children.  The four years of college….let them go to the school of their dreams, no matter how far from home that may be.  And let them be safe from harm.

#HAWMC Day 25 Learning

wegoday25What have I learned from Health Activists bloggers?  Whew! Where do I start?

Probably the most important thing I learned is not from one specific Health Activist blogger but from them all….

I am not alone in this battle.

#HAWMC Day 24 Wordless Wednesday

wego day 24

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#HAWMC Day 23 “I wish this gizmo…”

wego day 23

If I could have the ear of the engineering/marketing people at a major diabetes medical equipment manufacturer, I would let them know what a dream gizmo for the management of diabetes would look like to me.

First, I am tired of “one offs”–some great ideas but they work independently…not integrating or coordinating with any other products on the market.  For example, iBGStar meter…love that you can turn your iPhone into a meter….but why limited to iPhone users only….some of us can’t afford such pricey phones.  Why not create a meter that can be used with any smartphone? And the iBGStar doesn’t talk to any pump.

T1’s and their caregivers need less “stuff” to lug around…

Medtronic users:  pump with tubes (pump is also the device to bolus/set basals etc), cgm w/transmitter, meter that links to pump, lancing device, strips, lancets

Other tube pumps (Animas, T-slim):  pump with tubes, remote to bolus/set basals (which is also the meter for Animas Ping),  lancing device, strips, lancets, additional meter for T Slim (no linking meter)  These pumps currently do not have cgms that are integrated, so cgm with transmitter will also need an additional receiver to carry with you.

Omnipod:  pod pump, pdm which is meter + remote for pump operation,  lancing device, strips, lancets –no current integrated cgm so cgm with transmitter will also need an additional receiver to carry with you.

For those who don’t pump:  insulin vial and syringe or flexpen, bg meter,  lancing device, strips, lancets and maybe a cgm system

No matter which way you manage Type 1, there is a lot of stuff to carry around!  Oh wait, I forgot the glucagon, glucose tabs, juice boxes….ok, you get the point! 385-Who-has-diabetes

So here it is, what I want –The Dream Diabetes Managment Machine

A waterproof tubeless pump

that has accurate cgm and pump contained in the one pod

and insulin and glucagon (oh, Artificial Pancreas we long for your approval)

with the ability to operate pump from any smartphone

and use any smartphone as a bg meter–with test strips of choice

and allows multiple users to be notified by alarm when bg goes high or low (controls to be set by owner)

That sounds about right!

But what I really want is a CURE!

#HAWMC Day 22 The Top Ten Things Type 1’s Can’t Live Without

Starting with the most important–

1. Insulin (I know, obviously…but sadly too true!)

2. Continuous Glucose Sensor (okay I’ll throw the insulin pump in with this as they are integrated) and the mySentry (Medtronic’s remote monitor for caregivers)

3. Internet–for connecting to the DOC, looking up carb count/food allergens

4. Juicy Juice–those little boxes come in mighty handy treating nighttime lows

5. calculator–when I am trying to calculate a correction for a high in the middle of the night

6. Bayer ContourNext Link meter….takes much less blood than the OneTouch Ultra Link used + it lights up so I can use it at night without a flashlight!

7. The Bayer Contour 2 “pricker” aka lancing device….this has been KC’s pricker of choice…we covet them!

8. storage/organizers: everything has a place and everything in it’s place where D-supplies are concerned

9. KC’s Spi-belt that she wears for PE and sports…keeps that pump out of the way and safe.

10. String cheese–KC’s fave “free”snack.