Thursday, July 20, 2017

Not Letting T1D Mess Up HER Goals

Our oldest daughter is now driving.  

I'll continue to type while you adjust and let the information sink in.  If you are like me, that may take a moment....driving IS one of the scariest parenting moments. 

Several years ago, another blogger parent shared her own personal driving stories as one by one, her teens living with T1D made the plunge into the world of driving.  I was actually horrified, while also feeling awe and a slight bit of  jealousy - because truthfully - having another driver was definitely needed within our household.  For the record, her young drivers did just fine.  The worst seemed to be the need to stretch out curfew for 'just a few minutes more'.  That seemed very typical of most teenagers and so reading about their experience helped me to relax. Well, mostly.  

And to give you that same gift of relaxation, I want to share this story with you. 

Over the past 1.5 years, thanks to a graduated license, our daughter has learned to navigate her vehicle and her T1D care with ease.  The reality is that as parents, we often focus on the imagined 'worst case scenarios' and fail to see how proficient our young people have become.  It becomes even trickier when you couple in the 'what ifs' of T1D.  Believe me when I tell you, those first few months, we worked hard at ensuring that our daughter had a protocol for caring for T1D.  There is fast-acting glucose in her center console, there is an ID on her seatbelt and her wrist and we heavily discussed the need for testing - not guessing at BG numbers - before she drives.  

But this strategy was not our sole focus.  We also had to teach her how to handle freeways, roundabouts and parallel parking.  My husband, whose own father was a school teacher and driving instructor, was fixated on giving his own child the best defensive driving education that any child could need.  I tease but he had her working my own minivan like it was a tiny sports car.  I can't even do that. 

Yesterday, our daughter drove to one of her final orthodontist appointments.  The visit required a drive of about 20 minutes each way.  In leaving our house, she felt slightly rushed as she was running behind to begin with.  Hopping into the car, she forgot to check her CGM or check her blood glucose through a fingerstick.  I sat in the passenger side, unaware as well.  My mind was more on the impending visit than what she had forgotten.  

Seconds into our drive, she suddenly pulled into a parking lot.  Surprised, I questioned her.  

"Mom, I almost forgot to check my BG.  I want to make sure that I am safe."

With fingers in action at lightening speed, within moments, there was the all-too familiar click, wirrrrrrrrrrrr and Beep!

"205 mg/dl", she happily revealed.  

Back on the road we went and as she drove further she shared, "I don't want to have problems with driving and T1D.  This is too important right now.  I have things that I want to do and I don't want to mess any of it up."  

I bit my lip to keep from further parenting her and just nodded in agreement.  My advice or scolding wasn't needed and if I had shared any of my favorite lectures or opinions, it might have changed the course of what she is planning to do.  

Sometimes, our teens are their own best guide.  We just have to give them the freedom to figure it out. 

Friday, July 7, 2017


Sometimes in the middle of a joyful moment, there is a lull.  The music dims for a split second and I find myself taking in the surroundings like an impartial third party witness.  The girls are happy.  My husband, despite his ever-graying hair, looks relaxed and young again.  And for this moment, no one is thinking about health, medicine or outcomes.  We are just a regular family, enjoying a regular fireworks display on a regular summer evening.

It is lovely.

That is the kind of moment that I am cherishing this summer. Our youngest is still dealing with chronic urticaria - though the hives are NOTHING like they were in the early spring.  Thanks to the multiple antihistamine regimen, the hives look less intense and now appear as a splotchy, blotchy map of redness. When a flare occurs, the itching drives her mad and she has explained that it feels like her skin is both on fire and full of ants.  The feeling is so intense, that it immediately forces a dose of her (new favorite) prescribed hydroxyzine pill.  Minutes later, the effect takes hold and the itching lessens as her skin fades back to her normal pale glow.  I have to tell you though, in the brief time span of watching her struggle, my stress flares to unbelievable heights.  I feel the same itchiness, the same frustration, the same (yes, sometimes) anger at having to deal with this. It is hard on both of us.  I want nothing more than for her to feel good this summer and yet, this is the best we have at the moment, mostly good.

The world of T1D is similar, so this feeling of helplessness in watching a child struggle is not new to any of us.  My role is as a witness to the world of highs and lows.  I see them, I participate in them and worse, I remember each and every one of them. This, my friends, compares little to living through them.  My girls are strong.  So darn strong because somehow, they have made this amazing life happen, all while managing one of the most burdensome autoimmune diseases with little complaint.

I think about that strength; the resiliency that they both have cultivated.  It helps to reframe my thoughts when it feels so out of my control.  I know that they will both thrive.  They just will.  Actually, I should say that they have willed it to be so.

Last week, they won their first golf tournament of the summer junior tour season.  Our oldest placed first and our youngest came in second.  The tournament ran for six hours - incredibly hot, slow and frustratingly l-o-n-g golf.  By the second hole, the girls were backed up to two other three-somes awaiting their own turns.  There was little shade on the course and so, the sun hammered down and within a few minutes, I could see our youngest scratching at her cheeks, then her neck and finally her arms.  Because parents are allowed zero communication with players, we had created a plan ahead of time to keep both Benedryl and her hydroxyzine in her golf bag. Without hesitation, our youngest quickly proceeded to give herself a dosage. She knew what she needed to do and made it happen.

That hole wasn't particularly great as she struggled to regain control of her body, but after taking care of her urticaria, she once again hit her stride... navigating her game AND maintaining her T1D.  In fact, both girls were so good at keeping their blood sugars in check, that not once did I ever feel the need to ask a Ranger or a Judge to step in with carbs from mom.

And so this leads me to the moment that I am in right now.  I'm savouring the life we have.  The understanding that this barrage of autoimmune is not going to hold them back.  They want to be a part of life - not just a witness to it.  And that is the best kind of outcome we could ask for.

Thursday, June 15, 2017

Sometimes The Best Outcome is Not a Cure

Sometimes the best possible news arises in a most non-dramatic fashion.  While I would love to pick up the phone and hear someone shout, "There is a CURE! Go get it!" (and for any particular disease that effects any one of us in this world because I really am not choosy - we NEED more cures!!), today, the message on the other end of the line was just as sweet.

"It is NOT systemic!"

If someone ten years ago would have told me that news like that would bring pure joy to our household, I probably would have nonchalantly shrugged it off.  Ten years ago, after the diagnosis of T1D, I was so hyper focused on finding a cure, that I am sure that settling for anything less than, would have been a huge disappointment.

After this week, I am certain that there are shades of wonderful.  Yesterday's hazy gray has given way to a lovely calm, cool and happy bliss.  Our youngest daughter's health is not being threatened by an over abundance of autoimmune diseases.  Yes, she will have her three and yes, there are no guarantees that more will not appear in the future.  Yes, her third is incurable, although remission is possible.  However, today, that is not her worry.  Today, she will continue her journey into a happy childhood; albeit with T1D, Hashimoto's and Chronic Urticaria.

And that is OK.

Sometimes the best outcome is not a cure.

Today, it is an outcome that is healthier than possible others.

Thank you for the kind Facebook comments.  I am so grateful for a community that supports one another.  My heart is full! 

Monday, June 12, 2017

A Third Autoimmune Diagnosis

It's never easy to hear news that reshapes the view of your life.  It is even more difficult when you are a teenager and the news comes with uncertainty.  Our medical team knows what it is that she is dealing with but there are many variations to the reasons behind it.  Like my grandma would say, "It's about as clear as mud."

If you have been following our story, our youngest daughter is indeed dealing with chronic urticaria.  The type of urticaria that she is dealing with is rare; less than 1% of the population have been diagnosed with this particular type, which is called solar urticaria.  Solar Urticaria is exactly as one might guess, an allergy to the sun.  

In itself,  all types of urticaria are particularly harmful.  Urticaria can be debilitating as it caused raised hives, itchiness, soreness and in our daughter's case with Solar Urticaria, all of the those aforementioned symptoms with the addition of pallor and faintness.  Nothing worse than going outside, and within seconds in the sunshine (or more directly, in any type of UV ray - even on a cloudy day), and suddenly having a case of raised, itchy, painful welts.  Then, upon coming indoors, while waiting for the hives to subside, suddenly feeling like you are going to pass out - all while trying to act normal in front of your family, friends, teachers, coaches, or anywhere that it might happen.  It's awful.  The stress of this happening has been so limiting to our youngest daughter's typical daily life, that she has often refused invites including golfing, just to avoid having a reaction.  

13 year old children should not live this way.  

Once we could pin-point the reason, I began searching for answers.  Thankfully, we have a team of medical providers and an even bigger circle of medical experts from which to draw expertise.  Upon ruling out the obvious, not chemical reactions, not allergies to cosmetics, sunscreens, detergent, food, or pets, we embarked upon a mission to record the reaction.  Incredibly, our youngest was so upset and determined to find answers, that she willingly allowed us to video tape her sitting in the sun.  In minutes, we had all of the footage that we needed.  80% of others are not so lucky.  As we learned at the specialist, most urticaria cases are never fully understood.  

Our original appointment with the pediatric specialist that deals with both endocrine disorders and allergies wasn't to be had until September.  In Michigan, that seemed ridiculously far away due to the long, hot summer at hand, so we were able to be bumped to August and then, asked to be placed on a call-in for next available.  Luck was certainly with us because as of last week, we were seen by the specialist.  

The diagnosis of Chronic Urticaria was confirmed but now, we wait for a host of blood tests to determine why.... if it is systemic or not and is this a case of future autoimmune diseases?  Will we need to seek plasma therapy and start aggressive IVIg therapy in order to stop the influx of immune deficiencies? Or is it tied to her Hashimoto's Thyroiditis and are we seeing a rare 'symptom' expressed as Solar Urticaria?  Is this effect due to low vitamin D levels - both common with patients that are already diagnosed with poly-glandular autoimmunity?

I am hoping it becomes clearer in the weeks to come.  

If you are keeping tabs in this world of numbers, this is the third autoimmune diagnosis for our youngest daughter.  My mind refuses to accept that there could be more.  

She's 13, I keep thinking.  She is just a child. 

More than anything, I want to express my deep thanks to the families that have been reaching out to me.  From Alaska to Florida, so many of you have been kind enough to share your own experiences in seeking answers.  

If anyone is dealing with Solar Urticaria, I can share the name of the doctor that we are seeing as well as the general therapy.  Please consult a provider that is trained before starting any therapy.  In our personal experience, there are layers to care and as of this week, we are using several antihistimines, vitamin d replacement, and ranitidine (helps to increase the antihistimine effectiveness).  If this does not work, we will increase the antihistimine and try that under the guidance of our provider.  Each person is individual and much like T1D, there is no size fits all.  Again, clear as mud.  Except, we can slowly figure it out.  


Monday, May 22, 2017

Mystery Hives

Not long ago, just when the weather fully warmed, our youngest daughter ran outside to play a game of basketball.  Moments later, she returned with splotchy, blotchy marks up and down her arms, around her neck and covering her face.  The marks were itchy and later, when not itchy, were sore to the touch.  Her skin was clearly not happy.  A dose of Benedryl, plus a cool shower later, and she seemed back to her typical self.

It happened again playing golf and then later, walking to get an ice cream cone.  No new lotions, no perfumes, nothing different in her diet or even her daily routine.  The only commonality of triggers (that we were able to identify) was that each event happened as she spent time in the sun.  The brighter the sunshine and the longer the time spent in the UV light, the worse her hives became.  Eventually, I was even able to capture an episode on camera.  Towards the end of the video, my voice becomes a bit unsettled as literally, I am watching her skin break into tiny watery blisters as she miserably looks on.  To my horror, there is nothing to prevent this from happening.  All we can do is administer Benedryl after the fact.  This is not an ideal treatment as the Benedryl is making her more tired and irritable at having no energy, despite her wanting to participate in all of the fun things that she loves to do.  This is my child that loves to create, invent, participate and be active.  Nothing ever gets her down... until this.

We have an endocrine appointment scheduled for Friday in which we will discuss the results of a recent blood draw.  Since our youngest has been diagnosed with both T1D and Hashimoto's, I have looked into many research papers in which there is a correlation between chronic hives and autoimmune disorders. One study linked high TSH with hives.  Another cited references to the wacky immunity that already exists and declaring that being allergic to many things is a high probability.  A friend within our hospital directed me to further review Mast Cells and specifically, Mast Cell Disease.  I have spoken off-hand to several trusted providers in hopes of finding that one 'cure' but as of the weekend, the best advice was given by our long time provider.  He suggested adding not only Zyrtec but also, Zantac to her daily vitamins which already include a probiotic, vitamin D and a multi vitamin.

When I have talked about this, several adults that also live with T1d have stepped forward to open up about their experiences with hives.  Not one has had an answer of how they cleared up (or if they ever really did as many have chronic issues which unpredictably flare).  While I am not sure what to do in the case of youngest daughter, I would love to at least gather experiences in a way that hopefully provides a road map to solving the mystery of these hives.

As you all know, golf season is here and for our girls, this is their passion.  I can't imagine sending her out to play under this condition with no relief other than exhaustion after taking an antihistamine.  Poor girl.  She deserves better. Her very first Michigan Junior Amateur is right around the corner, so I am hopeful we can get her some relief before then.  Any help is appreciated.  

#Hives #Type1Diabetes #Thyroid #Chronic

Thursday, April 27, 2017

Spring Clean-Up

I spent the weekend working around the house and more specifically, the backyard deck.  After serving a twenty year cycle of Michigan weathering, the lovely deck had finally given way to something closer to mush than wood.  The dilemma was instant; replace or repair.

Due to the massive influx of financial needs while raising teenagers (oh dear friends, you can not save ENOUGH to help this issue), the answer the ONLY answer was to repair just enough to make it through another (hopeful) five - ten years. Which, if these people of mine do become doctors, will place us smack dab in the middle of PHds.  

With determination to save as much as we could, boards were removed and replaced.  Pieces that could be salvaged were cut and repaired.  Three coats of protective stain was carefully added and the results were indeed beautiful.  A little maintenance, some hard work and a whole lot of time was all the deck really needed.

Since the bulk of the project was mine, I had plenty of time to think back to the last time that we worked on the deck.  Our daughters were little.  I remembered how hard it was to balance the time needed to wash and clean the deck with checking blood sugars and ensuring that lows were far, far away.  I remembered how I could only do a little section before I felt the stress and worry of what was happening with their blood sugars. I remembered feeling a compulsion to have snacks on the ready as though I was preparing for a disaster relief effort.  It felt as though any attempt to do anything except manage T1D was insanely difficult.  I remembered crying and thinking that we should just move to a place where nothing else needed our attention because the T1D monster was such an overwhelming beast.

Yet, it happened.  We got through that point in our lives.  Decks were cleaned and stained while managing blood sugars and supervising little children.  Life was hard but it never stopped us from doing anything that we wanted or needed to do.  We dug deep and continued on, crying a little and complaining to each other and yet, reaching our goals.

Some of my closest friends that had walked the T1D journey before we arrived had explained this phenomenon to me.  They had shared that one day, it would be easier.  I never really knew if I could believe them. However, it is true.  With each age and stage of T1D, life does change and it does get easier.  If you are raising little ones with T1D, I can assure you that one day, the stress of repairing or replacing will possibly outweigh the stress over checking blood sugars.

In fact, you may even find yourself longing for a little one that ensures that you take a break and enjoy a snack of a little peanut-butter and jelly sandwich too.


Monday, April 17, 2017

Middle of the Night Alarms

I live in Michigan where the weather can be a mixture of April snow (two weeks ago), 80 degree days (two days ago) and seasonal nights.  While my allergies do not love this practice, to me, there is nothing better than opening a window at night and enjoying the first fresh air after a long winter.

Last night, I did just that.  After opening the window and then, tossing a bit as the unfamiliar noises became familiar again (why does a chirping bird sound louder than a dryer tumbling tennis shoes??), I finally drifted into a deep sleep.  And to be clear, this moment of sleep is so fantastic, that I feel completely calm and relaxed, even on a eve of a very busy week.

Well, as the law of parenting with T1D happens, sleep is just not meant to be.

Suddenly, a deafening scream shot me straight out of bed.  Panicked, I raced into our youngest daughter's bedroom, opened her phone to check the CGM and at the same time checked her little finger with the meter.  124 mg/dl.

Shoot.  Wrong child. In our world, it is a 50/50 guess when you are completely out of it and forget to check your own phone before running down the hall.

Swiftly walking into our oldest daughter's room, I repeated the same series of steps and again, a great but slightly surprising number shot back, 178 mg/dl.  What in the heck was that noise??

Thinking I imagined the noise, I tiredly crawled back into bed, checking my phone to ensure the volume was on and tried to fall back to sleep again.

The scream came again and this time it brought along a series of shrieks and crying.  Sounding almost like a baby, I worriedly again hopped out of bed but this time, went straight to window.  Ridiculously peering out but in the dark, knowing that looking for anything, and really a baby??? - how would that even be possible.

The sounds didn't last too long and eventually my tired brain sorted out the reality that it was most likely a coyote, and well, probably a mating coyote at that.

However, for everyone that finds it easy to sleep through CGM alarms, might I suggest this to be a new sound for both Dexcom and Medtronic?  Guaranteed there will be no sleeping in!

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.

Wednesday, February 15, 2017

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 

Monday, February 6, 2017

Stop Shame and Blame

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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.

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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. 

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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. 

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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!”. 

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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.

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Wednesday, January 25, 2017

Toddlers to Tiaras

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My youngest is set to take the stage as 'Glinda the Good Witch' from the famed Wizard of Oz, or as in the case of her creative school theater production, a comedy musical mash-up entitled, 'Dorothy from Wonderland'.

This might be the most desirable role for our daughter.  Glinda is beautiful as a sparkly, pink adorned, crown wearing fairy witch.  Every movement flutters and shines and did I mention that she sings?  Oh for the love of all things girlie, our daughter will be belting out fancy tunes and gesturing like the finest royalty.  It is all very pink and very, very fabulous.

And it is all rather amazing.  Just a short while ago, she was a tiny, pale and undersized toddler that was often overwhelmed with her new diagnosis of T1D. There were many sleepless nights for both of us and even more tears from ouchy finger pokes or painful site changes.

Yet in a blink, it has changed. The young lady that walks out onto the stage in a few days is poised, confident and braver than most.  She'll manage her T1D both on and off the stage and very few will realize the effort that it took to not only memorize pages of lines but also to stay safely in healthy blood sugar range for her multi-show performance. She now makes living with T1D look easy, even if it is not.

To all of the moms and dads that are tired, worried or feeling hopeless over T1D, remember that the next time you blink, it will be a different world and with a click of their sparkly heels, your child will be living the mantra that 'anything is possible'.

To our youngest... "Break a leg"!  

Wednesday, January 18, 2017

Politics Are Not People

Over the past year, I've listened to many sides of the vast political spectrum.  In observing the daily articles and social media posts, it's been easy to determine the following non-scientific generalizations:

  • There are those in favor of 'this' and others in favor of 'that' but rarely is there an acceptance in knowing we need bits and pieces of both.

  • Some profess open-mindedness but in doing so, spout angry, ugly remarks about any suggested solution and how it can't remedy the problem.

  • Others sharply denounce and degrade anyone with views that differ from their own.  

I find it all to be terribly sad.

Within this new society of radical free speech (meaning say whatever you want to anyone that you want to - especially on social or news media as long as it is behind a computer), what is most often lost, is human kindness.

Not the pay-it-forward-because-I-am-in-line-at-Starbucks kind of human kindness either. No, I'm talking about the fundamental understanding that we are all people.  To be exact; Human Beings.

With that proper designation, it is suddenly clear that we are bound by a commonality of flesh, blood and most especially; the will to live and to be loved.

Human Beings.

By pointing out that basic common denominator in all of us, my hope is that it may help to bring about a small cultural change within our world.  That change could then ripple through the many layers of society, into rules and laws and throughout civilization.

What a great reminder to our administration of remembering our individual selves and all of our fellow Human Beings.

Then, if we work towards actively fixing the problem, sharing our ideas in a positive and constructive environment, we may make headway towards goal-oriented results.

I say this often, #togetherwecan.

After all, politics are not people, but undeniably, Human Beings.  Instead of passively sitting behind a keyboard spouting negativity, I suggest that we continue to do what the #DOC has known to do for so many years... 

Stay informed, stay involved and be sure to vote.  

1.) Keep up on current trends here:

2.) Work with your local ADA and JDRF.

3.)  Know laws that pertain to your needs and communicate to the agencies that are implementing changes to voice your concerns.

4.) And above all... write to your senators, your congress and share the reminder that we are all Human Beings.

Monday, January 9, 2017

2017 A New Year: A New Stage.

While I haven't been blogging as much as I used to, time has certainly not stopped, me or The Naturally Sweet Sisters, from experiencing the many rapid changes that the teen years bring about. Our house seems to contain a different energy than it once did; busy, electric, exciting and most of all, forcefully propelling our family forward into the years of young adulthood.  I think my absence from blogging is a futile attempt to try to slow and maybe, savor these fleeting days, despite that nagging little voice that continually counts down the time remaining in which the four of us are together.

Next Christmas, she will be a junior in high school.

The Christmas after, she will be a senior.

Then, just months later, she will be off to college.  

And her little sister? Following right behind.

What I have discovered is that my patience is perhaps greater with knowing this a time of great change.  

Our oldest rarely misses a bolus, stays on top of changing her sites and has developed a new desire to make tiny pump corrections - just so she continues to feel well.  All of these tasks developed through the last few years and in some artful way, slowly came into focus as part of her daily routine.  

What I say is far less important than how I react.

For those moments where our girls 'forget' or ignore their T1D care, the way that I react is much more important than anything that I say (let's be real - yell) or demand.  Finding that compassion and understanding in what went wrong and guiding each of the girls to discovering their own resolution is much more important.  I can no longer swoop in and save the day.  Now is the time for their own solutions.  

Time is the greatest gift.

As these last few teen years unfold, complete with growing pains and amazing discoveries, I know that I want to continue to be there to see it all.  My youngest daughter recently snuggled up to me on the couch and whispered that she was glad that she could share what was happening in her life - this after a rather difficult conversation about the woes of social media.  Her little hug was a mixture of relief, support and love, because no matter how grown they are, they still have the need to be connected to their parents.  

We are their foundation, their glue and as I always say, their back-up pancreas.  

They will never be alone.