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. 

"Happiness"

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. 


Wednesday, October 25, 2017

Family Diabetes Camp


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Attention Families and Friends from Michigan and those willing to travel.....

Many of the parents that I speak with often are hesitant when it comes to making the leap to try T1D camp.  While our family personally adores everything about camp (it's magic I tell you!!!), I do understand the initial apprehension.  Those first few months are often overwhelming with just managing the challenges of living with T1D day to day  (or even hour to hour for those ping-pong days).  Adding in a camp experience can feel insurmountable.  How do you send a child to an overnight experience when you are still learning?  

It can be done!  We are proof of that.  And so are many, many other happy campers.  Yes, I think it is OK to be cheesy with camp slogans because, well, it is just the magic of camp.  Big kids and little kids LOVE it. 

My friends at the ADA have come up with a wonderful solution.  To help parents and kids ease into the transition of attending camp, they have developed a program for families to experience overnight camp together.  

This is also a wonderful time to reunite with summer campers and to recreate some of the fun memories that were had the previous year.  And because this is for families, parents can meet other caregivers of T1D and share in the camaraderie of walking the same path in life.  I have also been reassured that there are sessions that will be kids only and others that are parent only, so while you are having fun together as a family, you won't feel like you are on top of one another.  It's the best of both!

Lastly, camp recognized that many of the graduated campers wanted just one more time together in having fun.  To make this happen, the ADA created a special Young Adult Retreat.  Parents are not necessary for this age group.  Instead, the young adults (a mix of new, first time campers and alumni ages 18-25) can meet up for a weekend of bonding and silly shenanigans.  There will also be new information on technology, living your best life with T1D and more!  

Details are below.  Enjoy!




Registration is now OPEN!
CAMP MIDICHA WINTER FAMILY/YOUNG ADULT RETREAT
February 9-11, 2018

This overnight family retreat offers a family bonding experience while celebrating and learning more about your child’s diabetes. Physicians will be there to speak and educate parents about upcoming diabetes trends as well as overall diabetes wellness. Children will be able to enjoy all sorts of winter activities while staying at the YMCA’s Camp Copneconic. Cost per person is $75 this includes all food, lodging, education and fun activities. Children ages 5-17 only. Check in will be at 7 pm Friday, February 9 and check-out will be at 11 am Sunday, February 11, 2018.

NEW THIS YEAR! YOUNG ADULT RETREAT AGES 18 TO 25!
Camp alumni and young adults, ages 18-25 with diabetes, are welcome to join us that same weekend for the “Young Adult Retreat,” for fun activities, ice breakers, meet-and-greet opportunities with doctors, and more! Check in will be at 7 pm Friday, February 9 and check-out will be at 11 am Sunday, February 11, 2018. Cost per person is $75 this includes all food, lodging, education and fun activities.

Register for either retreat with the link below!

For any questions on either retreat please feel free to contact:
Krista Lang
Camp Manager

300 Galleria Officentre, Suite 111
Southfield, MI  48034
diabetes.org
1-800-DIABETES (800-342-2383)

Acceptance

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Not long ago, as my daughter and I were picking up some random groceries for the ever-empty-teenagers-eat-everything pantry, my cell phone suddenly shrilled the loud, needy and attention demanding BEEP of blood sugar rising.  My youngest daughter, not immune to the sound, looked towards me annoyed but dutifully began pulling out her pump to add insulin. 

((And yes, she did this without first checking on a meter, something that perhaps could be considered outside of protocol - because at this stage of 'teenager', my battle isn't with perfection, it is with just taking action.)) 

As she swiftly adjusted her insulin dose, my eyes locked onto a little kid about four years of age, standing just a few feet away.  Holding my breath, I wondered how this little person staring would affect her mood and future resistence to feeling like she wasn't always fitting in.  Staring can do that, especially when it happens frequently, and to a young person that may or may not always feel 100% confident.  In this exact moment, there was no escaping the laser locked focus of someone clearly witnessing something they had never before witnessed.

Side-note: Zoo animals have nothing on us. I get you Mama Giraffe.

Enraptured by my daughter's cool electronic device, he softly whispered "Wowwwww" and stared as she pushed buttons, making her pump whistle the delivery of insulin and shrill another beep once complete.  His mom intently reading labels was either immune to what was happening or delicately trying not to also stare. 

The little boy, unable to no longer keep his excitement quiet, pointed and said, "What is that?"

"My insulin pump.  It gives me medicine."

The little boy solemnly nodded his head and said, "That's cool". 

Watching the interaction with amusement, I am certain that the words insulin pump although meaningless, intuitively felt significant.  Clearly he understood the universal medicine. 

He then asked, "Do you feel better?"

My daughter smiled and said, "I do feel better." 

Her reassurance in feeling better satisfied any further questions and a moment later, he shared "I have this", and holding out his hand, he unveiled a very sticky, wet piece of what we call ABC gum - already been chewed. 

Despite it's clearly unhygienic display, my daughter made no show of disdain and simply replied, "That's cool." 

A moment later and each waved a friendly good-bye, parting ways and probably forgetting the entire exchange of curiosity.

Later, sharing the story with my husband, he offered an interesting thought. 

In a world of 'differences', wouldn't it be nice if we all just accepted with a 'that's cool?' and then moved on?












Monday, October 9, 2017

Diabetes and Halloween

Recently, our small community received the news of three new families now living with T1D.  As always (now through a cure) my heart not only breaks but I also feel this long inspired determination to help each newcomer adapt and adjust to the best life with T1D possible.  Because I am on a kick with Twitter hashtags @natsweetsisters, these are a few of my favorites: 
#togetherwecan #improveT1D 

They kind of ring a perfect bell, right?  The girls and I think so too!

Along with that, I have spent over a decade testing the analogy that within T1D, kids are first and diabetes is second.  Always.  I firmly believe that we can live our lives in the fullest manner possible if we remind ourselves of that cherished motto.  There are no limitations when you decide how best to fit T1D INTO YOUR LIFE and not, fitting your life into T1D.  Wash and repeat.  It's a powerful, cleansing mantra! 

And it works well, especially during the Halloween holiday madness. 

To begin with, just ask yourself a few questions.

1.)  What was Halloween like before T1D?
2.)  What would you like Halloween to be like after T1D?

My guess is that most of us, would enjoy a carefree Halloween just as it was before T1D.  The great news is that is VERY doable!  The lesson that I learned regarding food and holidays, is that to children, it is NOT about the candy.  It is about the gathering, counting, bragging and admiring of the candy.  On Halloween, kids are working to amass as much candy as quickly as possible.  If you have ever observed the evening shenanigans, you might have noticed costumed children literally running from door to door.  The little (and big) kids barely slow down in their efforts to ring as many doorbells as possible.  It is one of the reasons that masks are not as favored; the kiddos need to see to be able to run while avoiding sprinklers, lawn art and benches.  The same spirit of excitement holds true at fun Halloween style carnivals and Trunk-or-Treat events. Kids run and parents yell, "Slowwwwww down!".  I don't know about you, but mysteriously, on Halloween, my kids could never hear me. 

Once the speed candy gathering has ended, there is often a need for some of that beloved candy.  Blood sugars that spiked in excitement, start to regress and drop as blood sugar moves down.  A well timed sugary treat is often wonderful and as parents, the value of the gathered candy increases.  Suddenly, the candy isn't as much of a nuisance as it is a refreshingly 'free' replenishment of low blood sugar goodies.  Thank you to our friends and neighbors for helping out! 

As you wind your way back home, the tabulating and bragging begins. Many kids do not want to even eat the candy at the start as it will take their stash of 45 snickers and 26 kit kats down by one.  After a round of selfie candy pictures, the kids like the idea of knowing that it is their candy and will place it into a special plastic container marked with their name and attempt to hide it within the family pantry. 

You may notice the volume increase within your house.  Giggly stories may be shared about the family that gave handfuls of full size candy-bars or about the one odd house that passed out coupons.  Soon after, quiet resumes and bedtime will ensue and then, Halloween will be another happy memory just as it was before T1D. 

Here are a few fun ways to continue to enjoy Halloween:

1.)  Print up Halloween Carb Candy Counts and bring them along as you Trick-Or-Treat.  I also like to tape a set onto the plastic container or bag that will hold the candy within the pantry before we return home. That way, everything is ready to be stored and if someone wants to eat it without me, I have a much higher chance of seeing an appropriate bolus. 

2.) If some of the candy is not suitable, make sure you clearly discuss the reasons with your child (Chewy candy for braces, nut candy for allergies, scary weird serial killer candy that should be thrown out).  Try not to say "because of T1D".  After all, we know that all of our kids can eat a healthy, balanced variety of foods, which for kids includes the occasional sweet treat. 

3.) If a Halloween Witch came to take the candy BEFORE T1D, then a Halloween Witch may want to come after T1D.  The best way to make a relaxed and fun evening is to follow the pattern that you had prior to diagnosis. 

4.) Serve a well planned meal before heading out.  Running around the neighborhood takes a lot of energy.  As part of the festivities, our family likes to enjoy a fun meal of mummy hot dogs, ghost cheese shapes and crackers, veggie monsters (use toothpicks to create fun characters with broccoli, olives, carrots and celery.  Cream cheese makes great eyeballs) and lots of ghoulish water - black water (our Kroger store carries this) is a fun treat for setting the theme of the evening. 

As a bonus idea, if your loved one with T1D is using multiple injection therapy, having food available for a meal after the trick-or-treating is a wonderful way to blend the carbs of candy into the carbs of dinner.  No extra injection needed.  Going forward after Halloween, it is easy to add a few treats to each mealtime bolus injection to avoid extra shots too. 

5.) Have friends join in the fun.  This is a neat way to help show the world that T1D is limitless, even on Halloween.  Your loved one with T1D can do anything that they want!  Including enjoying a caramel apple or a butterfinger.  Or three.

Happy Halloween!

From the Naturally Sweet Sisters


Friday, October 6, 2017

Sometimes It's Not About Diabetes But It Always Is

Image may contain: one or more people, shoes, tree, grass, sky, outdoor and natureMy sweet girls are having the time of their lives during this fall season of golf.  Our oldest was blessed with conquering her challenging 'flop shot' and suddenly, her score dropped from low 90's to upper 70's.  (Side note: If you do not follow golf, getting rid of points means that you are doing great!) At the same, our youngest found herself placed in the number 2 position as a freshman on our varsity squad.  At 13 years old, she is competing with senior girls and holding her own, often besting her partners and pulling in top 10 rankings.  It is quite a fun moment for a parent to stand between greens and watch one daughter, then the next and feel nothing but joy as your children play with passion.  And did I mention that I really do not even play golf?  Yep, this is one skill that is not mom driven.

Last week, their hard work culminated in a team SEC Conference Championship - a first for their school in many, many years. On top of that, our oldest daughter was Low Medalist for not only the conference tournament but all of the tournaments combined - earning the most points in two divisions (Red and White).  Our youngest daughter proudly came in 5th over all, earning a medal too. The local newspaper took note and interviewed their coach, plus both girls. They also took a few pictures and marketed the article under 'Sister Rivalry', which of course made all of us laugh as never have two sisters been more opposite.  These two are best friends.

The conversation for the interview focused entirely on their golf game.  Readers wanted to know how they got their start, why they chose golf and how it has helped them to learn other skills.  Besides a random picture that cleared showed their Dexcom and infusion sites, there was no mention of golf.

And that was fine.  Sometimes it is not about T1D. 

As soon as the article hit the newstand, I happily 'shared' on a few social media pages amongst relatives and close friends.  With a hearty congratulations from all, there was also confusion as to why T1D wasn't mentioned.  After all, playing 5-6 hour long golf tournaments requires a deep dedication to staying on top of blood sugar management.  One living with T1D can't just forget about the highs and lows despite an activity or event.  Our JDRF Outreach Chair even sent me an email and said while she loved seeing the girls in the paper, she just wished dearly that there was a mention of T1D to inspire other young athletes and parents.

Talking to the girls, I asked how they felt and if they wanted to share that part of their victory; the part of managing the game of T1D.  Without hesitation, they whole-heartily agreed and said they would share with anyone at anytime as it was just as important to know that anything was possible while living with T1D as it was to do their very best at golf.  As my youngest said, "Your dreams don't have to stop because of diagnosis.  I dream all of the time!"  Her sister chimed in and said, "And look at our dreams coming true." They felt so strongly about ensuring that T1D was present and acknowledged for others as this summer, they became involved with the Diabetes Sports Project to showcase how golf and T1D can work well together.  As the only female golfers, they take this role seriously. It's hard enough to get girls involved with golf, but throw T1D into the mix and for many, it can be overwhelming.  Sharing their success will hopefully overcome both issues.  

This week, a second article will be published in which the focus is not only their amazing golf skills, but their efforts toward T1D management, their dedication to the T1D community and what they hope to accomplish as they grow older.

I can't wait to share it with you all as positivity and inspiration is contagious.  Even I feel reinvigorated with T1D care.  It's hard to manage from the fringe. This little boost has helped me too, even though I didn't think I was overly focusing on it.  As a mom though, it's hard not to.  In the deep space of my brain, it is always there.  See, sometimes it's not about the T1D, but it always is.





* To read the article about the SEC Championship, check out this link!
**To learn more about The Diabetes Sports Project and their Champions, including our NaturallySweetSisters, check out this link!




Wednesday, September 13, 2017

The Long, Winding Road of Diagnosis


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It's going to be an early fall.  

The air has been cool the last few weeks and I can already see leaves of russet, gold and orange co-mingling with our evergreens.  I love this time of year and especially enjoy the excitement of autumn with two teenagers in high school.  These are our busy years with school, sports and extracurricular activities and I am trying to savor each happy moment.  

Except for certain rare times in which I would rather experience once and then, tuck far, far, far away into the deep corners of my brain.  Families like ours understand that delicate balance of medical needs with everyday teen needs.  I have said that before and still, I keep trying to find the best angle, the best approach for the best possible overall outcomes.  As we go further into living with Type 1 Diabetes, there is less of a clear path for all of the other concerns that pop up, especially when we are not sure what we are looking for. 

A few weeks ago, both girls had their very first endoscopy appointments.  

Prior to their appointments, we had met with their pediatrician who had noticed various symptoms of weight loss, GI troubles and of course, the new (and oddly, amazingly rare) diagnosis of solar urticaria in our youngest.  Reviewing the symptoms, plus visually examining both girls, she felt it best to refer us to a gastro-intestinal specialist.  The timing was the beginning of school and for the first time in eleven years, I looked at our schedule and decided that if 'kids were going to be kids first', than something had to give - so I cancelled our quarterly endocrinology appointment.  That left me with a bit of guilt and the feeling that I wasn't balancing our world in the way that perhaps it should.  Shouldn't medical needs always be first???? Except this time, in my heart, I knew that wasn't so. The girls have a right to childhood long before having to check in with yet, another specialist.  

The initial blood work examined the possible causation of their symptoms.  Results came back normal with no specific reason as to why they both continued to have tummy issues.  In the meantime, physical symptoms were noticeable and from mid-summer through the procedure earlier this month, we were able to document exactly what was happening with stomach distress.  We were fortunate to take a few nice family vacations and each trip gave my husband and I, the bird's eye view,  into how meal time especially, affected the girls.  Nothing like being on the strip in Hollywood, CA and having to search out restrooms.  It was horrible.  

As this was unfolding, our youngest was not reacting well to the variety of medications that allergy had placed her on for solar urticaria.  I've shared before but both of our girls play competitive golf.  Our youngest began having trouble standing, starting having dizzy moments and felt faint during practice.  To make matters worse, the antihistamines allowed no respite from the hives.  Even with taking a multitude of medicine, she still had daily outbreaks with no relief.  

A good friend living with celiac reached out and shared her story, plus evidence that celiac often brings about skin conditions that may not be recognized as a celiac symptom, but when gluten is removed, clears up.  I explained that our daughter's blood work did not show any antibodies for celiac. However, we shared the thought with the GI doctor and she felt that based on their physical symptoms, we should go ahead and have the girls scoped. Unfortunately, we learned that blood work may be considered both positive and false positive as often, the results are innacurate.  I think of this as clear as mud science.  Our tools are still not perfected in much of medicine.  

The blessing of being busy as a family meant that we had little time to over think the procedure and so on the night before, it wasn't a big deal to either of the girls.  They both had to fast which can be dangerous to people living with T1D, but with our CGM present, we could see blood sugar trends.  I woke up several times during the night to check the CGM and by morning, felt that the girls were in a perfect range.  My husband, taking my relaxed cues, continued his routine to go to work.  Arriving at the hospital,  the girls and I quickly moved back to surgery, met with two separate anesthesiologists, our nurse staff, our gi specialist who was also the surgeon and before long, both girls were prepped and moved into two different OR.  It wasn't until an hour and half later that I was brought into recovery that I realized how foolish it had been not to bring my husband or another adult.  Suddenly, there were two patients in two recovery beds in my charge.  Our team thoughtfully placed their beds end to end and so for the next few hours, I walked back and forth from one daughter to the next. Side Note:  This might go down as one of my craziest parenting moments ever! Do not skimp on adult helpers! 

The GI specialist was able to immediately share her visual findings.  Both girls presented thankfully with no esophageal damage, but did have damage to the gastro lining of the stomach, flattening of the duodenum, along with bleeding, erosions and ulcers.  The tissue samples were sent to pathology and we were told it would be a quick turn-a-round for results.  Based on her findings, we prepared for a celiac diagnosis. 

However, the results came back in a much unexpected way.  Pathology found no Tcell damage, which was consistent with the lack of antibodies within their blood work.  As our GI doctor explained, that didn't mean that the biopsy was 'normal', it just meant that it was not celiac.  Clearly, the girls have damage as well as physical symptoms - yet, modern science hasn't found the pathway to understanding why that is.  Much like a dx of Type One Diabetes, we still do not have a direct causation to why the body has an auto-immune response.  This is again why it is so important to do pediatric and adult research.  We need more answers.

The diagnosis given to both girls is Non-Celiac Gluten Sensitivity (NCGS).  We met with a nutritionist over two days to discuss removing gluten for their diets and how to live safely from gluten exposure.  We learned that it is unclear as to why gluten causes gi issues in some people but that by removing it, their intestinal walls, stomach ulcers and even reflux will often clear completely up and go away.  They may even grow a bit more and see effects like healthier hair and nails.  Best of all, we may have a chance at seeing a marked improvement with our youngest daughter's urticaria.  One full week off gluten and off her five medications and she had less of an outbreak than she did with gluten.  She feels like this is progress. We are hoping for even better outcomes.  

This may be forever or it may be until new medical information comes along (c'mon research!).  We have agreed that the way we are most successful as a family is to ensure that we do everything together. 'One for all and all for one.' 




















If you are dealing with any of these issues, please consult your doctor.  The best advice I can give is to surround yourself with a team of medical professionals that continue to help seek medical answers that work for you and your loved ones.  Everyone deserves to live a healthy life!  

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

Witness

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.  

xo

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.

xo

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 NaturallySweetSisters.com.  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.