Wednesday, April 27, 2016

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.

Tuesday, April 26, 2016

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.

Wednesday, April 20, 2016

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

   Diabetes Emoticons- screenshot

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

Cover art

Tuesday, April 19, 2016

Exploring Education and Engineering with Diabetes

Third quarter has been entered into the grade book and as a reward for high achievement on report cards, we spent the weekend with our girls at a local university.

The first evening, we connected with our wonderful Dr. Joyce Lee @joyclee, an Endocrinologist/Researcher/Designer of the inspiring University of Michigan #MakeHealth movement to listen to an equally inspiring and creative guest presenter; Sarah Krugman from Tidepool.  The open - invitation event connected a few T1D professionals locally to review a few of the recent data management innovations that Sarah and the team from Tidepool created; notably Blip and Nutshell.  

Now you may be puzzled at why something wrapped around type one diabetes and even more potentially groan-worthy, wrapped around the data of type one diabetes would be considered a reward.  Even worse, a reward for teenagers.  I think the Emoji for this is pretty obvious: 

Yet, it was a reward indeed because what I have discovered is that the life we live while living with type one diabetes is often most impacted, by the people that we surround ourselves with.

People, like Sarah, that are doing the creating, designing, and making of products for type one diabetes are the ones that will effectively make change in our world.  Sarah personifies cool.  She thinks outside of the box while coloring outside of the lines with a result that is not only beautiful but also thoughtfully develops into a tangible product or process that makes life better for all of our families that live with type one diabetes.  

Just through attending Sarah's presentation, both girls left the meeting with a gift.  The gift was the powerful message of having the confidence to create through personal expression.  As background to how Sarah landed where she was with Tidepool today, she openly shared her background; including a diagnosis with type one diabetes and how her personal journey had led her through art projects that showcased the raw, emotional and personal story of living with chronic illness.  Those art projects led to positions within process and product design and from there, she was able to channel her expertise into meaningful new products with patient-centered design.  

Nothing clarifies this more than listening to two young ladies eagerly chatting about what they want to do and how they want to do it.  As our youngest said, "I can do that too.  Sarah should see my idea book.  I've got to get working on it."  

During the second day, with the creativity flow secured under their belts, both girls attended a Society of Women's Engineering (SWE) STEM day on the same campus.  This event brings girls together from all around the state to investigate the college of Engineering; including potential career pathways.  The days' schedule included participating in college class activities, lunch with students showcasing current engineering projects and a wrap-up college tour with a student panel q & a.

Hot off the heels of listening to Sara's design inspiration, both girls felt the desire to create and literally, make things that led to change.  Understanding that the possibility of allowing this to happen was only an education away, both girls basked in the moment of being on a campus that encouraged this type of passionate thinking.  Suddenly, it was as if a light bulb appeared over each of their curly haired heads. "This place is for ME" exclaimed my oldest daughter.

Sharing stories with her sister and the rest of our family, oldest daughter said, "Remember that teacher (professor) that asked about research?  I loved how surprised she was when I answered her questions about not giving up when projects fail.  With T1D, we can't ever give up.  We have to do what we need to do.  It was awesome to see that she understood.  I can't wait to go to school with people like that.  I'm going to do so well there."

I have a feeling that she most certainly will.

Tuesday, April 12, 2016

Observations For a First Timer - Diabetes and Driving

There are certain moments in parenting that feel completely and totally surreal.  

Watching your child as she opens the driver's side door and slides in behind the wheel in order to purposefully start the engine so she can drive YOU somewhere, might just be one of the strangest parenting moments of all.

Logically, I knew this moment would arrive but even now, at my ripe old age of 43, I can't shake the weird feeling that I was just in driver's training myself.  

How is this possible? How do I now have a child that is not only old enough to learn how to drive and yet, in this brief moment of time, feels more like a classmate, than a daughter?  

Furrowing my brow, I catch her staring at me, wondering out loud if she missed something during her practice turn.  I shake my head no and try to keep my face from spilling all of my secret thoughts.  

As she propels me gracefully around the student parking lot, with more finesse and calm than I think I ever possessed during my own teens, she asks me what it was like when I was learning - and because of the weird back-in-time feeling, I answer her unguarded.

"I remember Mr. S. taking us to the highway to practice our driving.  People smoked back then and he was a big smoker.  He drove us to a party store and while he picked up cigarettes, we were able to pick up soda pop. I remember on one trip, he even fell asleep while we were driving.  I think I drove us across the state before he woke up!"  

We both laugh and oddly, there is no discomfort or stress as she continues to practice.  She is surprisingly good at learning how to maneuver my mini-van.  With focus and determination, she brings the car around to back into a narrow parking space.  

Without a doubt, she is ready for this next stage of life.

This thought wakes me up a bit from my teen memories.  My job isn't to be her pal but to be her parent as we navigate this new path towards independence.

After completing her reverse parking, I ask her to turn the car off.  She looks at me with concern and I know that my face is ahead of my words in sharing the seriousness of what needs to be said, so I plunge in.

"This is a big step for our family.  I need you to know that Daddy and I will have rules for you to follow.  

Our first rule is the same as it always has been for everything that you do.  First, you must always have money and glucose (snacks, juice, tabs, etc.) both on you and in the car.  If you are prepared, you will have a better chance of managing small issues safely than if you are not prepared. 

Our second rule is the same as it is for anything that you do that requires a lot of 'oomph' physically and mentally.  Just like swimming, playing golf, taking a test, and now, driving a car - you will need to test your BG before you start that engine.  Every single time.  If you are low, you will treat - which is why you will always have snacks with you and if you are high, you will dose insulin.  Then, you will wait until your BG is in the safe zone before driving anywhere.  

Our third rule is the same as it has been since the day you were born.  If you are ever uncomfortable and need help, we want you to call us.  Any time, anywhere for any reason.  We don't even need to know why.  We will come help you or your friends or anyone else that needs a hand." 

Listening carefully with a very grown-up expresssion, she smiles thoughtfully, "I know, mama.  I know.  I will always do those things."  She reaches over to give me a hug and another smile, asking if she should drive us a bit more.  

After the practice is over and we move to switch seats - me back to my rightful seat in adulthood and once again, with her as my child, she leans over and shares, 

"Thank you for not making this all about T1D.  I know it has to be scary for you.  I promise that I am going to be careful.  I have a lot that I want to do. I don't want T1D to mess it all up but I also don't want T1D to take my excitement away...Thanks for not doing that."

Reflecting later that night, I suddenly realized that while my memories brought back my old feelings of being a teenager, her feelings brought back her very recent memories of me being her T1D advisor.  Clearly, being her mother was synonymous not just with being a parent but also, as a living, breathing representation of T1D.  

Discovering that I play a dual role within my daughter's life is even more disconcerting than feeling like a teenager.  It's a layer of responsibility to continue to allow her the ability to freely experience all of the wonderful things in life without placing too heavy an emphasis on T1D.  

A reminder for our family motto (now with a slight change): teens first, diabetes second.

Wednesday, April 6, 2016

The Diabetes Emoticon App is HERE!!!! Download for Free TODAY!

DiabetesEmoticons App Available on iTunes by Dr. Joyce Lee

The Naturally Sweet Sisters is excited to share the very the BEST news today!!!!

#Makehealth and Dr. Joyce Lee have received approval from iTunes and as of today, April 4th, 2016, our exciting new emoticons are available for instant use!!!!

With your iOS device, head to the iTunes App Store and search for DiabetesEmoticons App.  Open and save to your phone.

The emoticons can then be shared into Twitter, Instagram, Facebook, Text Messager, Mail and more. Where you feel like an emoticon is better and easier to use than a long, drawn-out sentence.

This is a project that was created with the entire DOC community in mind.  #Togetherwecan improve health care.  What we hope to show is that simple changes really improve the stress that both children and adults face in managing chronic illness.  Lessening the burden while working closer to better treatments and ultimately, a cure for Type 1 Diabetes is a mutual goal between our families and all of the medical/research teams that we work with across the country.

With that goal in mind, this app is FREE of charge and available to all families to utilize and share with caregivers, spouses, grandparents, teachers, coaches and friends.

Yes, already utilized via text message

We hope you love it - and remember, this is PHASE 1!  We would love to see more emoticons in the future.  If you have ideas and would like to share, please feel free to post your shared collaboration on this blog or on our Facebook page.  Tweet us at @natsweetsisters or @joyclee using the #diabetesemoticonsapp

Just a few of the many emoticons that we hope to use

In case you missed the back story, you can read all about the collaborative patient/doctor/community support team effort to create and implement Diabetes Emoticons by reading the following links:

Also, if you and or child have ideas for helping to improve clinic care, Dr. Joyce Lee is inviting pediatric patients and their families to join another collaborative 'Design the Future of Diabetes' #MakeHealth event on April 16th, 2016 at Wayne County Community College, Belleville Campus.  Registration details are available through this link: CLICK HERE

or cut and paste the following link into your browser.

Hope you enjoy your new DiabetesEmoticons!