Monday, March 13, 2017

We Need A Cure

I rarely focus on the details surrounding the back story of our youngest daughter’s dx.  I wrote about it here when I started to write  Once the initial story was on paper, I have wanted to keep the wound closed in hopes of fully healing.   Although, as long as my girls are living with T1D, I am not sure if that will ever be possible. The vines of T1D entangle every ounce of our beings despite my attempts to prune them.

On Friday, and in the way that life is full of twists and turns (and bigger vines), our youngest daughter’s best friend started writing her own family diagnosis story.  Her youngest brother was also diagnosed with Type 1 Diabetes. 

Processing the news of anyone having a diagnosis of T1D is painfully hard but knowing the family intimately for years, made the news hurt even more terribly.  Forever, a new T1D dx is truly like a punch in the gut. It completely takes your wind away.

The call from my mom friend on her way to the ER was poised and scared but also, full of strength and hope. As she sweetly shared, she knew ‘us’ and we showed her that it will be ok. As I listened, I felt like such a faker as T1D is anything but easy.  Just hours before the call, I had been awake, tending to my oldest sleeping daughter and giving her not one, but two juice boxes so her blood sugar with stay high enough to get a few hours of sleep.  While I may have told her a little bit here and there, I work hard at trying to not let T1D consume us, so not everything is shared.  Knowing this wasn’t the time to admit anything negative, I squashed my feelings and left her with more positivity, hope and strength, along with the promise to alert people that I knew within the medical community. 
Hanging up the phone, I fully exhaled and then through my tears, realized that I needed to share the news to my girls. Having just attended a ‘Breaking Bad News Seminar’, I tried to think of the words that could be used and how best to share.  The reality is that there is no way to deliver any type of bad news message while sparing someone that hurt. 

As the morning crept closer to pick-up time at school, I ruminated on our diagnosis stories.  I remembered my baby being so sick, so frail that at age 3, she weighed as much as some 1 year olds.  I remembered the inability of triage to poke her for an IV.  And oh did I remember. I remembered the tears.  The buckets of tears that were shed from her, from me, from my husband and later when things had ‘calmed’, our oldest daughter. 

Then, the learning came.  The foreign medical language, the decoding of acronyms, the medical procedures like injections, infusions, therapies; the understanding of the chain of medical command – that all people wearing white coats were not doctors and the vast array of insurance, pharmacy, and DME needs.

And it took years to figure it out and to believe in ourselves, that WE were experts.  There were good days and bad days.  Days that played nice and days that shook us to our core.  I became the mom that I am today.  I gave up listening to other parents about things like ‘independence’ and ‘helicoptering’.  Instead, I focused on keeping my child alive and ensuring that they were learning while living kids first, diabetes second.  Some people left out friendship circles and others came in. 

A second dark day loomed and our oldest was diagnosed.  I tried to stand in front of the train of T1D to stop it by calling everyone and anyone that had a connection to research.  This diagnosis gave us a gift with six insulin-free months and yet, like a ticking bomb, not one of those minutes could be used to stop the destruction of beta cells.  Humbled and determined, we continue on. 

Until today, where another diagnosis brings us to our knees.

When I told the news of her friend’s younger brother, my youngest daughter looked at me with wide open eyes and said, “Maybe I am contagious”. 

Then she started to cry. 

There are no words to explain the depth of her pain.  She cried and cried some more.  Knowing from decade – plus of living with T1D, that the world would never be the same for him, his siblings or her family, she cried deeply and painfully. 

This is why we need a cure. 

We reassured her, even though she knew, that there was no contagiousness in T1D.  Her questions of ‘why’ remained unanswered as none of us really know. 

We need a cure.

Sweet babies, little boys, little girls, teenagers, adults, friends, family or strangers should not have to live with Type 1 Diabetes.  The needless pain, suffering, and burden of care must end. 

And we are close.  Research is doing more than ever to help us get there.  But it’s not fast enough.  

We needed a cure yesterday.

Yes, we need a cure.

We need it today.  

Tuesday, March 7, 2017

The Ten Year Medal

A few months ago, we treated our youngest daughter to dinner.  She thought the day was meant to mark the end of the semester and to celebrate her successful straight-A report card.  In part, she was right.

The dinner was also meant to carve out a moment to reflect with a beautiful gift from Lilly upon reaching her 10-year journey with T1D.

Sharing this as a mom is quite difficult.  Each time I look at the pictures or think back to this dinner, the overwhelming 'realness' of what living with T1D really means, sinks in (or hits like a million of those proverbial bricks).  This is ten years of her childhood.  Ten years of wear on her little body.  Ten years of carrying the heavy emotional burden of chronic illness. Ten years of endless medical appointments for not one, but two autoimmune diseases.  Ten years of worry, sleepless nights and endless pokes and prods.

How do you celebrate that?

Image result for lilly diabetes pictureFrom the Lilly Diabetes Website: "Those who receive Lilly Diabetes Journey Awards are a testament to all people with diabetes that learning how to manage their health and adapting to the ever-changing technology of diabetes care can lead to a long and successful diabetes journey."

You celebrate ten years of living with Type 1 Diabetes because it is much more than that.

Ten years is a moment to reflect upon the journey of a baby that has blossomed into a beautiful young lady.  It is a girl that has more determination than any adult that I have ever met.  It is strength, fortitude and grace throughout every obstacle and challenge ever presented. It is the ability to do anything she wants with no limitations.  It is playing a multitude of sports, dancing and now, as a rising golf star.  It is forcing mom to accept sleepovers, sleep-away camp and solo trips with friends.  It is the desire to channel her experiences into helping others.  Most of all, it is the silliness, the quick wit, and the keen sense gaining endless knowledge to change the world,

Ten years ago, we were unaware of life with T1D.  Ten years ago, we were unaware of the need to change medical care.  Ten years ago, our family of four may not have realized the power of our love and commitment to each other.  Ten years ago, our friendship roots dangled and now they are firmly planted with the best extended family that we could hope for.

Today we are older, grayer and yes, wiser.

Today we more supportive, caring and compassionate.

Today we are focusing on our success and forgiving our failures.

Today we focus on a future that is undeniably beautiful and bright.

Today we focus on HER.

We love you, sweetpea.

To order your own Lilly Diabetes Journey Medal click HERE 

#lilly #Lillydiabetes #medal # Diabetes #award

Monday, February 27, 2017

Living with T1D: A Fool's Paradise

Image result for feeling sick

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.