Living with T1D: A Fool's Paradise

Our world with T1D is rather boring. We know the routine of finger pokes, CGM calibrations, site changes, doctor visits and medication refills like the non-MD holding doctors that we have become. Often, we feel like we are on autopilot as the burden of T1D is so consistent that it has morphed into becoming a strange kind of normal. Well to clarify, normal to us but to the outside world, still strange. This concept is part of the fool's paradise of living with T1D. The more calm the diabetes adventure, the more chance that something unpredictable is lurking around the corner.  Which in our world, is always the T1D monster.

Today, in the middle of my happily not-so-exciting morning of coffee and email routine, I received a chirp from my ever present cell phone.  Glancing simultaneously at both the caller ID which identified my daughter and the time which displayed 8:30 a.m., I assumed it to be nothing more than a plea for a forgotten item. With a smile, I tapped the speaker button and said "Hey Toots!  How can we help? What are you in need of today?" along with fully expecting a goofy apology from the girl that is known to forget items on occasion. Instead, I listened to a very quiet voice that replied "Hi.  Can you pick me up now?  I am feeling sick."

((Insert instant worry.))

When this happens, it helps to know how to handle sick days.  For our family, we have a loose routine of what the steps are to identifying the type of illness.  As always, contact your endocrinologist to develop the plan that is right for you and your child. 

1.) Start with measuring ketones. Either blood or urine ketone strips will work.  In our family, insurance dictates the type of measuring device and we have only been successful at being reimbursed by insurance for urine ketone strips.  I keep several containers on hand and ready to go at all times.  Our girls know to grab one and check before we do anything further.  I do however, repeat this step several times during an illness to ensure that we continue to remain ketone free. 

2.) Monitor those blood sugars.  When my girls are sick, often, their blood sugar levels begin to rise.  This is a typical output of illness as the body is working to rid the illness and that stress leads to an increase in blood sugars.  In our family, if there is no vomitting present, we often temporarily increase basal rates slightly to adjust for the increase in blood sugar. If you are unsure of the amount to increase, call your endocrinologist right away as feeling better goes in hand with optimal blood sugars.  If there is vomitting present, call your endocrinolgist for instructions on further care.  I've mentioned utilizing mini-glucagon injections in the past and if you are reading this before an illness hits, this is one technique that is worth learning ahead of time.  

3.) Follow-up with fluids.  When the girls are sick, they tend to avoid eating and drinking.  It's a tough to feel up to drinking or eating when you feel nausea or your belly hurts.  However, dehydration is one of the worst possible consequences of illness and it can also lead to the dreaded ketones.  Having small sips of liquid is important to staying healthy.  We encourage as much as our girls can handle without feeling overwhelmed.  

4.) Keep background insulin going.  Our girls may not eat carb laden food but they do need to continue to have insulin to keep their bodies healthy and to avoid dangerous Diabetic Ketoacidosis (DKA).  With injections, patients may have safety by having long-acting insulin (usually Lantus or Levemir) on board for 12-24 hours but patients using an insulin pump have the ability to disconnect and no longer receive their basal rates. This may be tempting for pumping patients that are unable to eat and feel low.  There is a concern here though; without insulin for a period of time, the body can start to produce ketones which makes for even more issues such as dehydration, stomach pain, more naseau and potentially landing in DKA.  In our family, first we change their infusion site to ensure that the pump is working and then, we tend to switch fluids like water for those that contain carbs.  Full-sugar ginger ale or tea sweetened with honey are two of our favorite choices.  This allows the body to continue with insulin pumping while staying safely in blood sugar range. 

5.) Contact your team members.  Often, families are worried and not sure what to do.  This is where your CDE or endocrinologists shine.  If you need help, are concerned or worried, call your med staff team right away.  This is especially important for illnesses with vomiting or diarrhea. You may find it helpful to note the time the symptoms started and to log a little journal of ketone and blood sugar checks.  Then, you can let your med staff team in on the bigger picture and a better look at if an ER visit is warranted.  Having med staff team support is the best medicine. 

One last note... I am raising teenagers and with that comes along another host of growing issues stemming from puberty.  If you are raising daughters, consider giving them a personal calendar or journal to track their cycles.  For sons, a fellow parent shared that she sees a tremendous amount of growing pains.  Both genders often suffer from excessive screen time, long study hours or irregular meal times.  Kids are not experts in their changing bodies and often need a question prompt to help them identify what is making them feel poorly. I discovered that asking the same questions each time to develop a routine has been helpful.  In the case of my daughter, she often suffers from seasonal migraines, had been playing outside during the unusual spring weather, skipped breakfast and to be honest, just needed some extra rest.  An afternoon later and she felt back to happy, healthy self.   

((Insert Instant Worry free))

For more information on T1D from the University of Michigan C.S. Mott Children's hospital (including a reference on page 24 for sick days) visit here.

Taking Diabetes to School - A Leveled Reader

When the Naturally Sweet Sisters were in elementary school, much of the first few years were spent increasing their knowledge of phonics, sight words and reading skills.  The mutual goal set by school and home was to create an environment in which grabbing a good book was as routine as picking out an afternoon snack.  Our ultimate hope was to instill a culture where a good book (and maybe an apple!) was devoured with glee.

Unfortunately, in the early age of leveled readers, not all story content was met with enthusiasm.  About five books contained information on trees and around the second or third read, our daughters found themselves begging for something with a bit more sparkle and flair. Anything with relevance into their own lives would have sufficed because in all honestly, rarely did the playground talk contain discussion about trees.

This week, one of our T1D families received a sweet surprise from a kindly teacher.  Upon openng their son's backpack, a special leveled reader appeared:  Diabetes and Me by Gabrielle Fimbres.

DIABETES AND ME

Interview (nonfiction), 536 words, Level L (Grade 2)

Nine-year-old Mia is one of almost three million children and adults in the United States living with type 1 diabetes. Mia must take special care of herself to live a healthy and active life. Diabetes and Me is an informational and inspiring interview with Mia. Readers gain insight into the day-to-day life of someone with type 1 diabetes through detailed text and informative photographs.

Why does a book like this matter?  In a world where little factual information is known about Type 1 Diabetes, having a relatable and informative book for children is a step towards a future filled with acceptance, empathy and compassion for all.  

Imagine children (and adults) reading vocabulary words such as blood sugar, carbohydrates, diabetes, glucose and insulin.  These words are part of every family's lexicon that lives with Type 1 Diabetes.  Sharing the story and the context of each of these words is a powerful equalizer and shows that nothing within T1D is strange or scary.  Kids that are taught together, grow together.  

To learn more or to share with your school, pass along this link.  

#leveled #reader #diabetes #school 

Stop Shame and Blame

Have you noticed that Type 1 Diabetes (T1D) incurs a fair amount of shame and blame towards the person living with the chronic illness?

Because it happens.  Intentionally or unintentionally.  Shame and blame has crept into our culture of feeling free to express any and all thoughts that enter one’s mind.  Perhaps comments are meant as well meaning.  Maybe the comments are born from frustration of watching a person grapple with such a heavy, burden-laden disease.  In any case, there is no longer a polite censure using the age-old wisdom that if you do not have anything nice to say, not to say it at all.

The shame and blame towards those living with T1D is not limited to one core population segment.  It’s not just thoughtless and insensitive SNL comedians, internet bloggers or 15-second fame seekers. It’s not just the nosy old lady that overhears you asking your daughter to tell you how many carbs on that package of goldfish crackers which prompts a stern lecture and an eye roll.  It’s not just the person that sees your child testing their blood sugar and then asks if they have the ‘sugar’ because you, the parent, must have done something to cause it.  No.  It is bigger now.  Doctors do it.  Teachers do it.  Caregivers do it.  Even Grandparents do it.  The shame and blame is so sneaky that it might not even be noticed. 

On a recent trip to see a doctor, our oldest felt the zing through this comment, “Well, if you knew you were low or high, why didn’t you make a change to your bolus/basal rate?”  The implied statement to our oldest was that she was the one who was at fault over her T1D numbers.  Not that it could possibly have been only in that moment, after reviewing her blood sugars for the first time, that it was clear a change needed to be made.  Only after an open conversation on the car ride home, did our daughter understand the intention - now she is able to make changes towards her own care as before, she wasn't ready.

This example opens up the need for further dialogue.  One sided-conversations and off-hand remarks are powerful.  Sharing multiple viewpoints and creating a give and take without judgement is needed. 

Earlier that week, our youngest had a proctor say, “Don’t think that you should take a break just to take a break.  You know what I mean?  This test is a big deal.”  The unintended result of this casual remark that suggested to our youngest daughter that T1D was not a big deal, only the test was.  As a result, during the entire time of the test, no breaks were given/taken – not even the ones that were supposed to be given during test section changes.  The result?  She finished a full hour early and was nervous of highs and lows the entire time. Another conversation at home and it was discussed that perhaps the thought of the assigned proctor was to not delay the time for the test so that our daughter was impacted by her T1D. 

 

The insensitivity of the comments can be shockingly bold.  I recently met with a group of parents in which one told me her child’s teacher has been known to say, “I don’t think your child even wants to do well.  She is always fiddling with her blood sugar meter while in class.  It is very distracting to see.”  I am confident that every child diagnosed with T1D would happily give this disease away in an effort to stop causing a distraction in the classroom.  More importantly, why did it not occur the teacher to address the child’s needs?  A one-minute conversation could have solved the situation.  Perhaps there was worry about highs and lows, an upcoming A1c appointment or something as simple as the fear of a forgotten lunch. 

Imagine that same child teetering through the day and then encountering her second adult in charge.  The comments continue.  I’ve heard stories about Para-pros asking children to hurry quickly through their blood sugar checks or sighing loudly when parents explain that the overnights were higher and their child may need to do an extra blood sugar check in the morning.  The message is clear; do not bother me with your medical needs.

It is not always an outside influence either.  While most of our families that live with T1D have encountered unkind remarks from extended family, the repetition to those remarks are most astonishing.  Despite education, training and time, there are many family members that continue to believe that “if only your mom changed your diet, you would be cured” or “Do you think something you did during pregnancy caused it? Because your family is the only family we know. My kids are fine.” 

My heart breaks most when Parents shame and blame.  We are on the front line with our children and we know what it takes to stay healthy while living with Type 1 Diabetes.  We know the pain and suffering from the endless hours of concentration, stress, worry.  We know the endless physical steps that must occur.

I have been troubled over the casual parent conversations that often start with, “I am at my wit’s end!  My teen is LYING and isn’t taking care of themselves” or “I’m so sick of it!  My teen doesn’t care.  They know they are non-compliant!”

That teen is not ‘just a teen’.  That teen is a young person, struggling to develop physically and mentally.  A teen is thinking not only of what needs to happen to survive the current moment at school, in their peer group, at an after school extracurricular or even at a job.  A teen may look mature but brain development is only just starting maturation.  Without invitation, they have been saddled with a heavy loaded backpack of T1D and expected to manage it in the same way a fully grown adult would. If they do not, we as parents, roll our eyes and speak words riddled with shame and blame.  “Why did you not bolus?  What do you not understand?  How come you aren’t smart enough to do this?  You have to be lying – you can’t forget!”. 

It’s sad, isn’t it?  Heartbreaking, really.

The solution is not easy.  There is no magic fix.  Our society has become numb to much of the world’s hardships.  Yet, for each person that reads this, take a pause.  Think about the Words that You Choose to speak and understand the Impact of Your Words will have on someone.  Above all, speak with love and You Will Make A Difference.