What am I Doing Here?……..for Kycie, for Reegan……the Fight Goes On!

Kyce ReeganThis is the question I asked myself as I looked at the many attendees at the American Association of Diabetes Educators (AADE) Annual Meeting who stopped in to the presentation of the incredibly knowledgeable Susan Weiner and myself at our missed diagnosis of T1D.  People believe that speaking in front of a large crowd is easy for me, in reality it is not, for reason that those who are close to me understand.  It is even more daunting when the audience is full of professionals.  REALLY SHARP PROFESSIONALS.

The week before I was to speak I reached out to two parents who lost their child to this disease being misdiagnosed and to fill them in on what was happening. It is always a stark reminder to me that this work should not, and will not, stop for me until the paradigm is changed to a direction where each and every person showing stomach virus like symptoms (and more) are checked for elevated blood sugars.

What makes it easier for me to present is when I reflect on each and every person I have met in this battle who has a child who and is no longer here because a simple blood check was not done.  I also reflect on the many people who have joined this fight, and have been in this fight, long before we have arrived where we are today…….but make no mistake; the surface is barely scratched.

Presenting at AADE allowed a very unique opportunity.  Hopefully, and eventually, every state will hear the message and carry the banner.  The list keeps getting longer of those who help and when it comes to AADE, Susan has been my mentor and guide through the maze of people more educated than I could ever become and true community leaders.  My thanks to her are endless.

I also know I have a story to tell……..and as long as I have a breath in me, the story will continue to be told………it’s owed that much energy, and more, to Kycie, Reegan, and the so many more who can no longer fight for themselves.  Are you still in the fight? Because we surely need everyone willing to spread the word.  Let’s not wait for the next Kycie or Reegan to happen to say, ‘this is horrible’.  Let’s get rid of ‘horrible’.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Oh…..It’s Butterfly Kisses…..My Baby Girl is Engaged!

kaitlyn-job“I think we have been apart too long.  I really just cannot exist without her in my life.”  And in an instant, all of the concerns about,; will he take care of her diabetes, will he make sure she is okay, will he care for her, will he…..will he……willl he???????
I answered him, “You not only have our blessing, we would be honored.”

And in those few words, I felt all of the energy run out of my body, my precious little girl, my baby girl, the one who “Daddy’s-Little-Girl” describes…..was being given to another man to become one.

Just like that.  Just that quick.  After 26 years 9 months and 13 days……my daughter would leave the shadows of her mom and me and become engaged to become one in another’s life.

He’s a good man.  He’s been part of our lives for a long time.  We have watched the two of them grow……apart….and together.  She’s now a nurse, he graduates the Police Academy early next year.  They will be fine.

My little girl.

Was it not just yesterday she had to climb to get upon my knee.
Was it not just yesterday we were rushing her to the hospital and diagnosed with diabetes.
Was it not just yesterday that I wiped her tears.
Was it not just yesterday that her feet were on top of mine as we danced.
Was it nt just yesterday that we started with butterfly kisses.
Was it not just yesterday that I was superman and could do anything.
Was it not just yesterday that I tucked her in at night and sang to her.

My little girl.

No man has been luckier than I to have such blessings.  Wedding plans are looking toward early 2018.  And at that time I will walk her down the aisle, I will lift her veil, I will shake his hand and pass her hand over to his.  She will change her name on that day.
She’ll make a promise,
And I’ll give her away.
Standing in the bride room
Just staring at her,
She asked me what I’m thinking,
And I said “I’m not sure,
I just feel like I’m losing my baby girl.”
Then she leaned over and gave me

Butterfly kisses, with her mama there
Sticking little white flowers all up in her hair
“Walk me down the aisle daddy, it’s just
About time”
“Does my wedding gown look pretty Daddy?”
“Daddy don’t cry”
Oh with all that I’ve done wrong,
I must have done something right
To deserve her love every morning,
And butterfly kisses
I couldn’t ask god for more, man, this is
What love is
I know I’ve gotta let her go, but I’ll always
Every hug in the morning, and butterfly kisses

I love you my baby girl.  Congratulations on your engagement.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: Lilly Fires First Shot in Lowering Insulin Cost……Now We Need a War!

first-stepToday, Lilly Diabetes released an announcement that they are reducing insulin up to 40% for some users in the retail market.  You can read the announcement here:

Now this very well may not be for everyone and clearly will not work in all cases, maybe not even in a whole bunch of cases.  But it will help in enough cases to impact a good deal of lives, and that’s good.   Lilly deserves all the credit in the world for actually trying to do something, and being the first to fire a tangible shot.  Now naysayers might criticize it; but there is something in this release that is revealing when Lilly Diabetes President, Enrique Conterno, states that this is a ‘first step’, and I believe him.  I participated in the discussions mentioned and I can tell you this, Lilly is serious in their attempt.

Why?  Because as I have stated before, I’m not a huge fan of petitions.  From my days in government I know they accomplish little but good PR for the ones issuing them.  In government it’s pretty well accepted that the amount of signatures is directly related to the PR machine behind it and not really about the substance, personal letters are a different story.  What Lilly Diabetes is doing is an actual action step.  IT WILL NOT be for everyone and may also be for a smaller percentage, but it’s a step and when it comes to major companies, I will take any step than no step at all.

The diabetes companies are not alone in the price issues and the costs being so high to patients; and it’s my sincere hope that ALL the players involved can solve the issues themselves because I feel, as is more of the case than not; to have the government involved in trying to fix this will be a disaster—–it usually is.

So I applaud Lilly Diabetes and I know they are not done speaking with people trying to figure all of this out.  It’s also my sincere hope that ALL OF THE PLAYERS (including retailers and payors/insurance companies) sit at the same table at some point to actually do something constructive to help those who cannot afford these crucial diabetes needs.  Not merely to issue a press release in the first week after a meeting (who cares) but to construct a bridge of new ideas and out-of-the-box thinking with REAL solutions, because diabetes patients deserve at least that.

Agreed, what Lilly Diabetes has begun will not solve all the problems, and maybe only help a small percentage;  but actually helping a small percentage quietly and methodically for some sort of actual solutions are so much better than huge “look at what we are doing” campaigns that will accomplish little.

Patients need action steps and Lilly Diabetes, I hope, has just started the snowball to begin rolling down the hill.  Time will surely tell.  Bravo Lilly Diabetes.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: Survey Data on T1D Misdiagnosed (Partial Data)…….Is Now In! Read and Share!

proof-unidagnosed-t1d-proofWhat I am about to share with you, has been shared with me from our friends from Glu, a T1D exchange Community and T1D Exchange. I’m sharing it because so many have been inquiring as to the data from their extensive survey entitled: Driving patient-centric research: DKA & Misdiagnosis.

Let’s be very clear about these findings…..THEY ARE VERY PRELIMINARY and these findings will be reported in much greater depth and with additional context in publications.  This is in progress as we speak.  After you read this, you will have a ton of questions, and that is fine—-but please know that nothing more can be released at his time until the information is released in publications; when it will be accompanied by more thorough findings.

The study came about because in 2015 there were a few well-publicized tragedies involving children passing away as a result of type 1 diabetes.  In these cases, they were not diagnosed in time.  Discussions with KOLs (Key Opinion Leaders) revealed that there is not any large-scale, patient centric data available on the diagnosis experience.  Glu and T1D Exchange created a survey to collect this information.

The study was created based on seven tiers of interaction: Current events, Discussion with Key Opinion Leaders, Survey Design and Deployment, Analysis to pinpoint predictors (WHERE THEY ARE RIGHT NOW), disseminate findings, Raise Awareness, Affect change and prevent tragedy.

The survey was developed by Glu and the T1D Exchange Clinic Registry with an IRB approval.   2700+ participants’ response were tallied about their diagnosis experience.
Just some preliminary data from T1D Exchange revealed the following:
>35% of all participants reported that they were not diagnosed until more than one month after they noticed symptoms.
>41% of participants reported DKA at the time of their T1D diagnosis
>20% of participants report being admitted to the ICU at the time of their T1D diagnosis.
>24% of participants report being misdiagnosed with another condition at symptom onset.
>16% of pediatric patients were reported as being misdiagnosed compared to 39% of those diagnosed over the age of 18.

There will be much more data coming out on this but since so many have been asking, I wanted to you see just some of the data thus far.  What is now evident, at this point, is that now there should be no doubt that when 1 in 6 children and 1 in about every 2.5 adults are being misdiagnosed…….this country has a problem with T1D diagnosis.

When this battle started, it was very difficult.  We had nothing but a thought.  A thought and the belief that there was a problem coming from the so many I had been in touch with over the years.   With the outpouring of support from the diabetes community both during and after the news of Little Reegan and Kisses for Kycie interest grew; and grew quickly.

Now—-it’s a movement.  In as much as we all could shout from the mountaintops (and did), and even share the horror stories, the constant response was, “Yes, this is horrible but is there data showing larger proof?”  Now, we have indisputable data.  When I read the data, to be honest…….I burst out crying.  Now we know.  To the so many doing so much, and way too many to mention here, thank you.  To Anna Floreen, Danielle Gianferante, Dr. Henry Anhalt and all those at Glu and T1D Exchange, thank you for caring and creating this survey.  We know how much more work you will be doing and we look forward to the comprehensive final findings.

To all those who lost an angel in this battle, and to whom a solemn pledge was made not to not stop until we have changed this paradigm——I share this data but know that it is just a weapon to help us in this ongoing battle.  A big weapon.  We will not stop.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

*preliminary data collected from over 2,700 individuals who participated in a 2016 T1D Exchange survey about their diagnosis experience.

Our Diabetes Journey…….Energy Better Spent…..Why Argue????

argueAt a recent event, I was engaged in a discussion with a couple who are ‘fairly new’ on this journey.  After a conversation on a myriad of topics the gentleman said to me, “Can I ask you something personal?”  Never one to run from such a question I answered, ‘Sure”.

“How do you stay at it?  We are so new at this and I am so confused.  Not by choices but by the so many who seem to know, telling me how, and what, I should do.  That all pharma is bad and greedy; that I should manage a child a certain way; that a cure is a pipe-dream…..how do you stay at it and who do you believe?”

How much and how often is that question place in front of our face?

I come from a political background.  I learned something a long time ago that has served me well both in my political discussions and on our diabetes journey.  The first thing I do is go into any discussion, like I know nothing.  That way I have opened the door to learn.   Many people get into discussions, to tell you their point of view and to justify the way they believe.  I don’t, and can’t, engage in that anymore.

I’m also a realist (thanks to mom).  In the last election, it was an absolute certainty that there would be a new President.  So I braced myself that a new one would be in place. My candidate not winning, or winning, only mattered to my personal belief, after that there was only one absolute certainty; the person winning is my President.  Me wanting or not wanting does not matter because for the next four years that person is sitting in the oval office.  I’m a realist.  Happy or unhappy becomes short-lived and the process moves on.

My energy is better spent on things I might have a chance of changing.  In my 58 years I have seen many things happen, I have seen many disasters (natural and man-originated); I have seen promises broken and kept; I have seen successes and failures; I’ve seen my share of a great deal…….and no matter what, on the next day the sun not only shined…….it shined brightly.

Diabetes, already unhappy with, I had to get to the point in my life that dealing with diabetes would become where happy or unhappy did not impact the end, I needed to accept what it is, and move on.

What I never gave much attention to is the wave of idle chatter.  When I hear about anything in the diabetes world, that I do not know about, I find out.   I don’t find out for someone else, I find out for my kids.  I find out for me.  I constantly tout that education is the equalizer in diabetes.  And THAT is the truth.  The more you know, the less trivial ‘arguments’ become important because you already know what works best.

I don’t get into discussions about pump or MDI (multiple daily injections); waking up to test or not; to give this food over that food; there will never be a cure or there will be; when I heard something, I investigated.  But THE ONLY THING THAT MATTERS is what I know to be true for us. Nothing else matters and probably should not matter to you either.

If people ask my opinion, if I have one and if asked, I will give it.  As my-brother-in-arms Jeff Hitchcock states constantly, ‘look at the data”.   I don’t listen to another’s opinion in data, I look it up for myself because I’m not in this battle for any other reason and I have too much work to do than to try to convince people about anything.

Share to engage in a discussion.  Engage in a discussion to learn.  Go investigate to learn.  At the end of the day it was/is up to Jill and I to decide the path to take….and we have; and we still do to this day. Some people share some of our path, and others have more differences than similarities in how we handle our diabetes journey.  And that is just fine.

In anything I have dealt with, it comes down to this; I work as hard as I can for something I believe in, if it comes out in our favor — wonderful; if not, I’m assured of one un-argumentative fact……that sun will surely shine, and shine brightly tomorrow.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.


Medical Advice is NOT a One Size Fits All……Be Careful Getting AND Giving!

lucy-diabetesThe post on social media goes out; “My child is going through (fill in the blank with a medical ‘occurrence’.)_____________________.  I have tried this (again fill in the blank) ____________________; that (again)_________________________;  and this again __________________________________ to no avail, I’m very worried, what should I do.

And the list begins on advice.

I’m the first person to state how powerful and needed it is to have support in this journey.  We all would be lost without it.  But to be honest, I would feel much more comfortable if on such posts, they began with……………..”I contacted my medical professional about (all the above) and am waiting for a call back, knowing diabetes is different in each and every person, anyone else go through this, and what did you experience; just while I am waiting for a call back.”

And when it comes to the responses, there are times when I read something, I am looking for; “What did your medical expert say?” and/or “If it were me, I would go to the ER and have a professional medical opinion on next steps immediately.”  And I do not find it.  It is at this point I think, is it a game of russian roulette.  Only a matter of time before the wrong advice is taken.


Because something that worked for my child, does not mean your child should, or could, do the same thing. And quite honestly, it could be dangerous.  I understand that we may think it is a “given” that people know to take everything with a ‘grain of salt’ as it were……..but I’m not so sure.  I also get the idea that we have heard horror stories about what did, and did not, happen at a medical professional’s office.  I get it.  I REALLY GET IT.   But they ARE THE MEDICAL PROFESSIONALS FOR A REASON When reading something and wanting to help, please consider to begin your comments with,  “What did your medical professional say?”

We can always weigh a course of suggested action with what others do; but it just make sense for the professional to be involved.  To think that medical advice is given and taken without consultation is one of the scariest things I come across.  Who is doing the ask?  It very well might be that they are brand new into this journey and may not know yet how much one thing needs to be weighed with another.

Assisting others in need is such a GREAT THING and in so many cases wonderful suggestions are made, but I just think it makes sense to start some conversations with, “What did your medical professional say……?”  And if not contacted yet, state, “Let’s involve them now……while you are speaking with others….and you and they can create the best course to follow……..”

Also understanding that some questions are not in this category and I’m not referring to those but, rather, addressing the issues when clearly medical intervention is needed and/or should be sought.

Doesn’t that make sense?  I seek your input.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: When A Child Dies, Yes it’s Okay to Question……..Yet Again.

Blue CandlesIt seems to be, reading the posts all over social media, that a young lady, another one too young, has passed away.  From what I am reading, it seems there was a ‘kink’ in her pump tubing and insulin was being denied entry into the body.  Her blood sugar rose, she entered DKA and at 21, we have lost another precious life.

There’s much discussions occurring within our community and I just felt like I needed to drop a line for thought, perhaps a dialogue or two as well.  It’s, of course, just so sad. unfortunately in our journey, we have faced this situation too often for comfort.   We begin to ask ourselves……….well……….all sorts of questions.  What we really want to know is, however, “how do I make sure this does not happen to us”?

I wish I could wave a wand and make that ‘pit’ in your stomach go away…….but I cannot.    Years ago, we lost a relative to our family.  Absolutely tragic circumstances.  I realized as I asked myself the same questions over and over and over and over again, that what happened, as tragic as it was, could only be avoided if we lived in a bubble.  Could only have been avoided if we and touched no one and no one touched us; and/or we spend every waking moment hovering over every breath our children take.

It was a horrible situation.  And a lot of ‘what ifs’ and ‘what abouts’.  We cannot live in a bubble and we cannot ask our children to either.  I have stated that there could come a time that anyone I love can be taken; we would have no control over that although we would like to think we do—–or we could.  But in truth, we do not.  I’m sure the family of that beautiful young lady will ask themselves forever…”…..if only I…….”  I cannot take that feeling away from them, and nothing anyone can say will make them lose that feeling. As my friend Michelle taught me, “….we do not accept, we learn to cope……”  And she would know, she lost her son, also way too early.

I have stated many times before, if anything happens to any of my children, diabetes related or not, I MUST BE ABLE to look myself in the mirror and ask that man in the mirror if he did all he could?  If I cannot answer yes, then I need to work harder at whatever I feel I must.  If something happens and I can answer yes, as Michelle taught me, I must settle for coping, broken heart and all.

So ask yourself if you are doing what is right for your child?  Do not necessarily think you have to change everything all around because of something that has happened to someone else.  Would we take the car keys away because the car malfunctioned for someone else causing serious harm?  Do we stop flying even though major malfunctions have cause planes to drop from the sky?

What we do is we ask ourselves, “am I doing what is right”?  It’s ALWAYS and in all ways okay to run a check list when we hear of a tragedy.   Run the checklist and if you feel okay about everything, try to move forward.  If you doubt, seek until you find the answers—-not the answers you may be told by just others but by finding out the answers until you are confident on the answers. It’s also okay to count our blessings that it did not happen to us.

Yes, it’s okay to question.  It’s also okay to say a prayer, or have a private thought, for someone who has undergone something we can only imagine; and only hope we may never know.  It’s ‘just’ diabetes, right?   The world has no idea……..like we do.  SIGH!
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Goodbye November……Hello………Life.

sunrise-with-blu-circleToday we bid adieu to Diabetes Awareness Month.  This is the 25th time for one, and the 8th time for the second; that I have said goodbye to this month of diabetes awareness.  In fact I’m quite sure that when we started this journey, there was no such designation.

It makes no difference.

Because December 1st, for us, will be no dIfferent than the first of November, first of March, or even first of July….diabetes is here and it still sucks.


Once we accept that fact, and I’m sure you will too, it’s time to realize that there is still an incredible world around our kids for them to enjoy at full steam.  They take the lead from us, as parents.  We encouraged our kids to live in a world of, “Here I come……” and not a world of “Woe is me….”

I’m not some medical professional telling you this, I am a parent….just like you.  I live through it now and lived through it with two kids for years and I want t share with you that unless life has played an absolutely horrid hand of cards to you and you lost your child………there is a lot of living to do.  When you think this disease is winning, think of parents whose lives have intersected with yours via social media or wherever; who lost this battle.

Actually think about them for a second.  Those who lost.

Then what you are now dealing with does not seem so bad, does it?  Start from that point and build upon it because everyday we have, in any instance–diabetes or not—is a gift.  A preciously wonderful gift that is waiting to be lived.  Opportunity, enjoyment, fun, laughter, and excitement with those we love and here is the thing……..it’s your call.

If you have money, or do not have money, whether you have other ailments, problems, pains, ill relatives,……it is all called LIFE and no one escapes life.  So in between those things that need to be dealt with, find the time to do something to take advantage of the world around you, and encourage your kids to as well.  DO something that empowers your kids; learn to say yes.  Learn to say, I’m not sure how, but we will figure out a way. Learn to say, we may not be able to afford THAT, but we can do this.

Make yes the only option.

We have tried to find the good, no-THE GREAT, for our entire lives on this journey and I am pretty sure we faced more than our share of odds against us.  But we did not care. We buried close relatives and friends, and we learned to live with two kids dealing with this disease…..that was not going to prevent us from anything.  When the bad came along, we used it as a reminder of how fortunate we are that we have another day to “Change it UP”.  And we took full advantage of that opportunity.  What will you do today to make tomorrow a little better for you and for you children.

What will you do to; CHANGE IT UP!

Why wait for just one November when there are 365 other days to start over……go for it!!!
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Cyber Monday, Something for You, If Needing to Shed a Few Pounds

dietto-goIt’s Cyber-Monday.  Now I know that you can get a million sales out there but here is one sale you might want to consider…..for yourself.   To be honest, I’m not a big fan of subscription meals.  That is, you pay a price and meals come to your house that are touted as both, tasting good and also better for you.

A few months ago I was contacted by Caitlin, who is the Community Outreach Specialist for a company called Diet-to-Go.  They wanted to send me a weeks worth of food, would try it in our house, and then let people know how we feel in an article.  I made it clear that I’m not a fan of theses-type-services but Caitlin persisted and informed me that Diet-to-Go was different.

So we tried.  They sent us a week’s worth of meals.

Now I am only going to give an overview here for a whole bunch of reasons. I’m not a chef, I am not a nutritionist, and taste is a matter of choice and different in each person. But the simple truth is, overall, that the food taste good.  Don’t be thrown off by my use of the word overall.  I did not choose these foods, I was sent a wide variety of choices so when you order, you can be as specific as you like.  The usual taste-load of spicy-ness was not present, as is the case in many of these-type meals, and the portions were as filling as one would hope. Certainly better than if I prepared them myself.

I did not try this as an entire ‘diet’ plan as is needed, but did lose a little weight and I did not have it for any real length of time. The food taste good; is reasonably priced; and if you are one who battles the ‘weight thing’ all the time—this might be worth a try.  And today on Cyber Monday….they have a great sale going on.  Normally this is the type of thing one thinks of in January but the sale made it seem worth a mention today on Cyber Monday.
Try it….you shoudl like it.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Disclaimer: in return for the meals sent to me, I agreed to write an article.  Weight loss and having diabetes are two distinct different subjects.  Type 1 diabetes is an autoimmune disease whereas the body attacks itself destroying the insulin producing beta-cells; type 2 diabetes is the amount of insulin a body produces vs. the amount of insulin a body needs–which is altered and results in the body not receiving enough insulin resulting in use of medication and/or additional insulin; in some case this may be impacted by body weight.

Inside look at the Macy’s Parade…….Not Too Unlike……Well, US!

macys-paradeWell tomorrow is Thanksgiving……one of my favorite holidays.  Clearly one of the most famous parades in the world will begin their march from uptown to downtown delighting the faces of millions of children and even a few adults at the same time.

For years I had the honor and the privilege to having but one job in the Macy’s Thanksgiving Day Parade…….to get those huge balloons from start to finish.  Leaving my house at 3:30 am and driving to New York where there was an incredible electricity of excitement behind the scenes.  Thousands of volunteers and tens of thousands of man hours to make a complexity of activity flow seamlessly for the parade watchers both along the route and at home on their televisions.

We all trained for some time with those giant balloons.  A Pilot, 2 co-Pilots, a Captain, 2 co-Captains, 2 vehicles with a crew of 4 on each, two NYC Police Officers and even up to 70+ handlers all for just one balloon.  Getting ready in our white or black jumpsuits there are many high-fives and biddings of ‘Good Flight’ as we all make our way uptown to the upper East Side.  “Good Flight” is where the team works together for a successful trip through the entire parade route until the balloons are put away for next year.

The timing is crucial, and we are all connected via headsets as communication is key. Wind velocity with gusts are measured throughout and especially at every open cross street, obstacles are constantly being avoided (Street lamps have all been turned away to help), and away we go.  Launched……and all of those faces. It is a feeling of huge success when our job is completed and the balloons are all packed away.  Hours and hours of preparation—for a two-hour march.

It is all of those incredibly smiling faces that make it all worth it.  From fingers pointing to gasps, the faces of the children are just amazing.  One giant team to benefit all those kids.  I guess when you think about it—-not too unlike our wonderful diabetes community.  One big giant team to benefit so many.  There is so much to be thankful for during this holiday, my list is long and my heart is full.  Thank you to all of you who do so much to make this world a better place.

And on Friday, the diabetes community will all be back it again…..trying to make a difference because that is what we do.  Back at it.  “Good Flight” to all, and a most joyous and peaceful Thanksgiving to everyone.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.