Wednesday, December 6, 2017

Working T1D In - On Their Time

Part of my success strategy in taking care of the T1D monster is to find the easiest, least burdensome way to manage the myriad of 'extra' tentacles like blood work, eye exams, allergists, paperwork and even supplies. I do this by focusing what works for us and when.... NOT by robotically following the alloted plan of action. For instance, I try to schedule A1C appointments at three and six months to guarantee we get a time that works, and I often order supplies at night while everyone is asleep, using email to our DME - something that I didn't even know was an option until I asked.  For eye appointments, we schedule the girls together, pick up the scripts and then, I order online at home at night.  This often involves a slight bit of extra time to work the appointment into our schedules, but the ease of which it is accomplished, far outweighs the calendar dates.  

After last week's multiple clinic appointments, we still needed to obtain labwork.  Through the years, I have found that our walk in neighborhood lab is more accessible as there is never a wait time.  Conversely, the pediatric lab at our local hospital always has a long line and while the process is geared exclusively to children, it takes extra time to do the exact same procedure.  This wasn't a big deal when my girls were in preschool but today, with a fear of missing homework, tests and exams, we try to avoid any extra time spent in the hospital. In turn, this relaxes my girls and helps them to not look at blood draws as both a literal and figurative pain. 

So from last Thursday's GI appointment, we looked at times where we could make it work.  Friday was out as there were already too many things going on after school and to be honest, I wanted to give the girls some time off from anything medically related.  The weekend is always a bust as the lab is closed and so, we geared our blood draw time towards Monday afterschool.  Together, we strategized to make a plan to pick up the girls at dismissal and to head directly over to the lab.  I went ahead and gave our endo team a head's up of the plan so that they would know when to roughly check for completed labs.  

All should have been well.  Except that this is real life and with real life comes this messy, unplanned series of interruptions. The girls learned that one of their service organizations called an inpromptu meeting after class to discuss the preparations for a holiday celebration at the local senior center. 

That's right, the girls and several of their classmates are volunteering at their local senior center during the holiday and they wanted to meet and discuss the evenings' events. (Side note:  TEENAGERS VOLUNTEERING!!!!)

Vs. a blood draw.

If you read my post last week, you will know that I am struggling with the notion of placing T1D at the top of the mountain of life. Sure, we could spend extra, anxiety riddled time at the end of our second day of missed school in waiting for a blood draw.  Then, we would have been done with a blood draw as a need.  However, we would have had two very unhappy kids, feeling overwhelmed by the entire process and then, ultimately feeling even more negative towards an autoimmune disease that has no cure. We do NOT need negative feelings. 

- OR -

We wait.  We live life as kids first, T1D second and we recognize that this health journey is a marathon, not a sprint.  That the needed blood draw will still happen.  That the results may or may not require changes to medication, and/or T1D maintenance.  Life will continue and my girls will feel whole, centered and balanced as they continue to achieve everything that is important to them, while managing T1D.  Most importantly, we will fulfill the need to have positive outcomes/outlooks. 

So yesterday, on our own terms, we finally made it to the lab.  Confidently, my youngest daughter walked up to the check-in desk and recited her first and last name plus her birthdate.  She then walked back to me to the waiting couches and sat down.  Sixty seconds later and she was called back.  I asked her if she wanted me to go with her.  Now too big to sit on my lap, I usually stand next to her and hold her hand while the tech draws up the samples.  Without hesitation, she shook her head no and said she was going to be fine.  A few moments more and she returned with a freshly neon pink taped cotton ball and a smile. We immediately headed out and back to the budding independent teenaged life that is rightfully, very important to her.  

In that moment, it is easy to see that the decisions we make are the best decisions.  Maybe it was the ease of the clinic, maybe it was waiting a bit longer, maybe it was just getting a good night's sleep.  Whatever it was, in that moment, it was the best possible outcome for our daughter.  

Our goal is to have the most positive outcome and overall outlook towards one of the most intensive self-managed autoimmune diseases in the world.  

I think we are on the right track. 

Friday, December 1, 2017

Parenting High Achieving Kids with T1D

We just wrapped up what felt like a world tour at our clinic.  Four appointments in two days, with two daughters and a half dozen providers that have become part of our team.  When we are done, it is a mixture of relief, exhaustion and gratitude.  I love our 'people' but the reality is that in times of T1D need, this is a huge burden.

In the eyes of my girls, it can be summed up into a negative knot of things like: missing school, missing important academic tests, skipping practices, missing club meetings, rescheduling work dates, not getting perfect grades, not getting paid, feeling like you let your friends down.... 

This is the real burden of T1D for many.  It isn't the steps needed to monitor blood sugar, dose insulin or change infusion sites, but it is the imbalance of prioritizing what is most important to the patient.

To our provider that said T1D needs to be at the top of the list, I understand that but the risk is that shifting something to the top may result in the breakdown of everything else and that may lead to depression, avoidance and non compliance.  For a mom that watches closely to ensure that her kids are free to not let T1D hold them back from anything they want to achieve, I think we need to be ultra careful in our language that depicts T1D as the most important part of a teenagers day.  It is important and I agree that we need to find a way to fit it in.  However, if we make T1D the domineering influence of everything our kids accomplish, we will in turn be sending the message that if their care or A1C is not perfect, than they will have failed.  I don't know about you, but I am pretty certain that there is no way to get an 'A' on how you take care of your T1D.  The best we can do, is truly the best that we can do.

Which brings me to the this thought and something that I want to start a conversation on... how do we balance 'Kids First, Diabetes Second' with our high achieving older children?  I am slowly transitioning care to the girls (age appropriate steps toward independence) and am not necessarily the main caregiver that I used to be.  I am more a support system for the steps/tasks that they do not want to do (insurance, night-time blood sugar checks, supplies, other med reminders, etc) and that leaves more on their shoulders. 

How do we teach the understanding that it is still a balance to manage T1D while living a full, wonderful life?  And for our children with T1D, how do we express the need to understand that there is 'perfect' YET STILL, the understanding that there is a need to manage daily blood sugar tasks.  In other words, this is a marathon, not a sprint.  We can't give up on taking care of everything if one thing like A1C is not perfect. 

I would love to hear your ideas and thoughts on successfully raising high achievers that seek perfection in life.  Can we help them find their balance?

Thursday, November 2, 2017

November is National Diabetes Awareness Month

November is National Diabetes Awareness Month.  Ironically, the month long salute to the need for healthcare improvements and ultimately, a cure for T1D, culminates with a blue-ribbon wearing explosion on November 14th.  The irony for a mama of two with T1D, is that special day, happens to also be my birthday. 

Weird, right?

Since 2006, my BIG birthday wish has remained unchanged.  Each and every year, when I blow out the candles, I take a moment to think long and hard about what I hope to have come true.  In the early years, I wished for nothing more than a cure.  However, over time, I have adapted my desire to include things like:

"More acceptance"

"Less burden of care"

"No limitations"

"Long and healthy life"

This year, eleven years post dx, my wish has evolved to include perhaps the most simple desire of all. 


As I skim through the many T1D sharing sites, the news of November is National Diabetes Month is riddled with with hurt, fear and sadness.  While the reality is that in order to receive more funding for pediatric and adult research, often the news must reflect a call to action that shares the worst parts of living with an incurable disease,  this 'bad news stream' also damages the patient's ability to positively cope with the care required UNTIL there is a cure. 

For all of us, I want to remind the world of the many gifts that we can also celebrate while living with T1D.

  • Success in developing and creating insulin in 1922 thanks to Dr. Banting.  
  • Producing the first chemically synthesized insulin in 1963 thanks to Dr. Sanger.
  • Improving injection therapy to include the first insulin pen in 1985 thanks to Novo Nordisk.
  • Releasing the first insulin pump in 1992 thanks to Medtronic.
  • Performing the first islet cell transplant surgery in 2000.
  • Creating the closed loop pancreas project thanks to the University of Cambridge in 2013.  
  • Developing the iLet thanks to Dr. Ed Damiano in 2015.  
  • 2017 Medtronic's release of the next generation insulin pump and beyond..... the sky is the limit!  

These reminders of advancements in care might bring happiness and a reminder of why we also celebrate November is National Diabetes Month.  While we need to continually push to receive the funding necessary to find better improvements and ultimately, a cure, we also must take time to review where we once were and how much better our lives with T1D have become. 

Happiness isn't saying that we accept T1D as our fate forever, but it is the key to unlocking the positively of living life - no matter what - as fully and completely as we can. 

And with T1D, accepting happiness is almost as good as insulin.