Naturally Sweet Sisters Goldie Oldie : In the Spotlight (or Under a Microscope)

This is from the archives of Naturally Sweet Sisters but even though it was five years ago, it feels every bit as relevant as the day it was written and shared.  Hope you enjoy this look back.... 

Friday, October 21, 2011

In the Spotlight (or Under a Microscope)

My oldest daughter has a broken bone in her hand.  This most likely is not headline news to any of my reader-friends.  We are past the surgery, bone graft and new scaphoid insertion and are now working our way through a six-month recovery. 

Yes, this was not a simple bone set and release.  This was a complicated procedure requiring over three hours of initial surgery, with a second surgery scheduled, to be determined.

As a family, that means that we have yet another medical issue to deal with.

I use the term crawling under my rock quite a bit.  Here is why.

When you are labeled "that family", you know the one that has so-called problems such as "two daughters with type 1 diabetes", the last thing you want to be dealing with is more inane conversation from people who do not understand anything more than a runny nose.  You are in a virtual spotlight just by way of living.

With her arm in a splint/sling and with an insulin pump prominently secured to her hip, that spotlight shines even more intensely.  Wherever we go, it almost seems as though we are stepping behind a podium for an impromptu media conference. 

"Miss, Miss!", says a reporter who is cleverly disguised like a parent we know.  "How on earth did you break that?  What do you mean a bone graft?  I have never heard of such a thing!"  

Another suspiciously similar parent-reporter steps up, "Can you tell us what happened?  Does anyone know about this?  So you have diabeat-us and a broken hand?  Aw, nothing goes well for you honey, does it?" 

"Another problem?" says a reporter who looks a lot like our mail lady.

If the door for unsolicited comments was only cracked, it is now wide, wide, wide open. I can only imagine what it is like for my oldest daughter when I am not there, helping to deflect some of the questions.

Being under the spotlight leads us to another crossing in our journey of life... do we tuck our tails and head for the big rock? 
No, because we are stronger than this.  If we are in the spotlight, we owe it to ourselves to shine.  We answer the pivotal question of I don't know how you do it with a shrug and smile.

As 'that family' we are responsible for showing our children (and apparently the rest of the world) that neither a complicated bone break nor type 1 diabetes is going to get us down.  It might make us pause for a bit, but we will recover and move on, stronger than ever. 

I owe this to my daughter, who much like her mother, looks for a place to hide when someone starts in with the questioning.  I need to teach her the survival skills that she will use for the rest of her life.  Sadly, a broken hand and type 1 diabetes will not be her only tribulations in life.  She will undoubtedly face even more challenges.  Life, while beautiful and wondrous, can also be filled with strife and struggle.  Perseverance and defiance (along with a quick wit) will become a few of her many tools in overcoming these obstacles.

After the 99th question today, I took my daughter aside and told her to invent a story (not a lie) but a good, stop-in-your-boots-and-stare-with-your-mouth-hanging-open kind of story.  After a moment of shock, she looked at me and giggled, "You mean to explain how I broke my hand after climbing the Grand Canyon?  Or how the alligator tried to bite me after I climbed out of our bathtub?  Or should I just say that if they think this is bad, then they should really see the other guy?"

Now that's my girl!  Give those reporters something to write about! 

If that doesn't work, the space under my rock is always available.

Teen A1c : You got Some Splainin To Do!

Reducing the A1c 'Suck Factor' is hard to do. 

Heading into our endocrinology appointment last Friday, I could feel my anxiety building.  I was grumpy while downloading pumps, sleepless the night prior in thinking about the many steps needed for getting the girls on a school day and even more tired (cranky) than usual during the morning of due to my restless energy the day before.

It's a vicious mental cycle.  Worry, rinse, repeat.

While it's not often that I feel such a rush of emotions over such a ridiculous test like the A1c (one sun-in-your-eyes snapshot of what we have been through over three months), but for this appointment I had wandered off onto my own parenting path for several endocrinology-related decisions.  While I stood firm in feeling that I had done what was best for our little family, I also felt a tremendous amount of pressure in having to explain what had happened.

Sometimes, it feels necessary to assess the T1D situation and decide the best course of action as it relates to your child.  So I took off onto a parenting road that led to three small changes:

First, the Naturally Sweet dad and I assumed control over our youngest's T1D during all 'at-home' times.  Yes, some young teens can handle all of the day-to-day tasks but some children, like ours, need a break.  This is perfectly normal and honestly, to be expected.  Managing T1D is a huge responsibility and one that easily can lead to burn-out.  Our youngest felt overwhelmed in trying to remember to do it all, so as parents, we assumed responsibility for early a.m. pre-bolus, site changes and evening bg checks.  We never gave up the middle-of-the-night blood sugar tests, so we continued to manage that as well.  During the school day, we simply asked her to test before lunch and add up her carbs from her bagged lunch.  To help with a reminder for school, we added a simple lunch time alarm to her iPhone.  We also gave her the option of having mom drop by school but she declined that on the premise that it was 'embarrassing'.  To counter that thought, we agreed that mom would not appear as long as our youngest managed the bg test and bolus responsibilities.  Youngest feeling victorious and relieved, eagerly agreed and to date, hasn't missed a lunch bolus in over 7 weeks.  The result?  A happier, healthier, mentally-balanced kid with a major reduction in A1c from 8.3 to 7.7.  

Secondly, our oldest daughter is spending so much time of her day away from home in activities that even though she is compliant in managing her care, we felt that she could alleviate a few of her extra bg checks.  Our concern wasn't instilling habits to take care of her T1D, rather it was to reduce the anxiety that comes from overly checking bg.  Since both of our girls wear continuous glucose monitors (CGMs) 24/7, we opted to use the data on the CGM to eliminate finger stick blood sugar tests before exams and before transitioning to activities.  We maintained the need to always check before driving a car and before any PE related activity; especially swim-related events.  The result?  A happier, healthier, well-balanced kid with a maintained A1c from 7.1 to 7.4.  

Finally, at our last endocrinology appointment, we were presented with the idea of having a do-over A1c for our youngest as she dealt with having her first A1c in the 8's.  At first glance, it seemed like a terrific option, especially for the kid that strives to be a high achiever in all that she does.  The endocrinologist knew that our youngest was due for another TSH check and felt that it might be great to tie both tests to one blood draw at the 6 week post-appointment time.  However, as time chugged along, it became clear that having that 6 week post-appointment A1c on the calender caused more stress, worry and anxiety than a regular appointment would have.  So I dug deep, evaluated the situation and decided to erase the calendar.  Perhaps for many children and teens, this would be a wonderful re-do but for our particular child, one that is sensitive, bright and goal-driven, this created a hyper-focus on achieving a target that in all reality is sometimes unattainable due to illness, hormones, puberty and growth.  I couldn't set her up to think that she had 100% control over delivering 'perfect' when it truly may have been somewhat out of her reach at that particular time.  The result?  Happier, healthier, well-balanced kids and parents without a worry as toward what the next A1c would be.  

As our Friday appointment concluded, it felt good to know that the decision making was well-received by our entire endocrinology team.  Talking out the explanations helped to spur thoughtful conversation regarding the individual needs for our daughters at this age and stage.  While approval wasn't exactly necessary, it was a nice gesture.  As a cohesive team, changing the T1D strategy mid-way without needing approval underscores our goal of creating a partnership for both of our daughter's care.  Sometimes, the best ideas will come from endocrinology, sometimes from parenting and sometimes from the girls themselves.  At the end of the day, it doesn't really matter... it only matters to know that we can work together to achieve the very best results; happier, healthier, well-balanced kids and parents.

It's HERE!!!!!! DiabetesEmoticons App for Android Lovers

We are sooooo excited to share our BIG NEWS!!!!  

The FREE DiabetesEmoticons App for Android has made it's debut!!!!! 

Now you have TWO ways to PLAY!  

1.)  Click HERE to load up some awesomeness or head over to the Google Play Store and search for the "DiabetesEmoticons" App or "Joyce Lee".

2.)  Click HERE to download the equally awesome version for IOS on the AppStore.  Or if you like, search under "DiabetesEmoticons" or "Joyce Lee".




And share, share, share with everyone you know!  We would love to help bring T1D into the common venacular of all that surround us.  After all, T1D is a part of life and we might as well have a bit of joy while we wait for our cure.


If you missed the background, and want to read more about the DiabetesEmoticons App, check out HealthDesignBy.Us and learn how collaboration between doctors, researchers and patient-partners works!

And if you have feedback, tweet us @natsweetsisters, or Dr. Lee at @joyclee, or visit our facebook page for NaturallySweetSisters and leave us a note for what you would like to see with phase 2.  We would also love to hear stories of how your family is using the app.  My personal favorite is the joy that I have from sending our kidlets a couple of text bombs with toilets :)  Yes, we are that kind of parent!

#Togetherwecan #improvediabetesnow #teent1d