2018, The Year People Died Because of PURE Greed.

There was a chill in the air as 2018 nervously tapped one leg than the other.  Every other year had to wait outside and 2018 was sure it was planned to be made to wait until the Boss came in.

The Boss came in out of breath and stood behind the desk, red-faced and staring at 2018.  Both did not speak at all for what seemed like an eternity.

Really?  Really 2018?  Each and every year I had to let your predecessors go because they did not fulfill the goal of finding a cure.  It’s a mandate of every year to take us closer…….to find a cure.  But you, 2018, you did the complete opposite.

2018 started to speak; I……I……I’m not sure……

The Boss broke in; Hush up.  I’m furious, 2018.  Livid.  Angry. Disappointed.  And I won’t even get to the subject of a cure.  Not at all 2018.  I have one word that continues to infuriate me.  One word.  (screaming now) Do you know that one word, 2018…..do you know the word?

2018 stared down at the ground and the tears uncontrolled spilled out of each eye and fell to the carpet below.

Yes, I think so.

The boss leaned forward on the desk and burned a hole into 2018 with a stare both steaming hot and frigid cold at the same time.

Insulin, 2018…..the word is Insulin!  Every year before you 2018, made an argument to be kept even though a cure was not found and quite frankly, I owed it to them to consider—-to almost allow them to continue based upon some of their INCREDIBLE advancements,  but not you 2018.   CERTAINLY NOT YOU!  How could something so crucial be kept out of the hands of those in need based solely upon cost?  REALLY 2018……it’s money?  Greed?  Pure Greed?  And it does not lay at the feet of the Insulin Companies, that is too easy an answer, and it is not an accurate one either.  There needs to be open disclosure…..the Insurance companies, the retailers, and most of all; the PBMs (Plans Benefit Managers).  Buybacks, rebates, and everything else that adds to the burden of the patient.  I’M SICK OF IT 2018! DO YOU HEAR ME?

The Boss stopped.  Just stared at 2018 who had nothing to say.   No defense.  No words, No retort. No possibilities.  Just……..nothing.

The Boss spoke almost in a whisper.  People died this year 2018 because of utter and stupid greed. People were forced to ration their insulin, and some plainly had to go without.  Shame enough for all.  Everybody pointing fingers at someone else.  “Not my fault” said by almost everyone.  And yet a son, a daughter, a mom, a dad, a relative, a person who was loved was buried, 2018, because they could not afford the one thing to keep them alive………………………………(The Boss yelled)  Insulin, 2018, INSULIN!!!!!!!!!

The silence was deafening.

The Boss with face covered and a whisper of a voice.:
Just get out 2018.  The cure wished for was actually overshadowed by people who cannot afford their insulin.  They died, 2018, they died.  Just get out, you were the biggest failure I’ve ever encountered in all my years.

There was nothing more to say.  2018 got up and walked out never even turning around or uttering another word.  As 2018 opened the door, left, and got into the elevator; the Administrative Assistant hurried into the Boss’ office.  The Boss stared out the windows behind the huge oak desk.

Should I send in 2019, Boss?

The tears rolled down both cheeks of the Boss.
Give me a minute.  (Sigh) Hopefully 2019 will have the correct priorities and we can focus back on that cure.  Someone needs to make a difference.  Insulin must become affordable for all.  Let’s hope 2019 is the one to do so.

We can hope so Boss, we can surely hope so.

The Boss sighed.  Show in 2019.

I am a DiabetesDad.
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An Annual Tradition……Twas the Night Before D-Christmas 2018

With special apologies to Clement Moore.   I present what has become an annual tradition……an updated, ‘Twas the Night Before D-Christmas for 2018

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The meters, CGMs, and supplies were put away with such care,
In hopes that Santa would bring the cure with him this year.

The children were nestled from head to their feeties,
While thoughts in their head were no more diabetes.
And mamma in her ‘kerchief, she prayed for the cure too,
A dad still wonders what else could he do.

Remembering this year; CGMs enough to fill a bin,
All so new and even under the skin,
Insulin is still with a cost way too high,
Government should act, stop asking why.

As costs continue to rise and wallets get thin,
We fought hard for lower costs of insulin.
The community raised voices loud and concise,
Costs are too far and need to be lower in price.

The voices were loud and the voices were clear,
We will shout as one, we all have no fear.
Insulin is not a luxury, stop causing such strife,
Insulin for all it is needed for life.

Many things were good, many things were fun,
Diabetes awareness campaigns are still being done.
The word is important for everyone to hear,
Capitol Hill is hearing our voices, we’re getting in gear.

Others will take the lead and we will all see
Better products, more work, and good advocacy.
Better pumps, insulin, and CGMS by the score,
There’s plenty coming and we’re screaming for more.

When you look outside at the fresh fallen snow,
so many are doing and so many you don’t know,
Think of those who inspire and soon you’ll see,
Things will move forward and continue to be.

The life is not the greatest fighting this disease.
Continue to ask as you drop to your knees
That things will get better and rightfully quick,
Good things to come, and not all from St. Nick.

So listen carefully as you think what needs to be done,
If you have an idea, take it and run.
Don’t leave it to others; it’ll be just a few,
“Don’t do nothing” is what you really must do.

And if you think you’re done, tired, and feeling sort of sore,
Think of your loved one with diabetes, it’ll make you do more.
And if not for you, it will be for their sake,
We won’t stop at all till they all get a break.

And then, in a twinkling, one day we’ll hear on the roof,
The prancing and pawing of each little hoof.
And the only thing needed in Santa’s bag for sure,
Is when diabetes is gone because of a cure.

So we will all continue to work, the ‘where’ is up to you,
But you have to make the decision on something you’ll do.
And one day we’ll scream and exclaim, “diabetes is gone from sight,”
The Happiest Christmas ever, and to all a good-night!

I am a DiabetesDad.
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Remember there is a “Best” in Banting and Best

November 14th, is World Diabetes Day.  This date was chosen because it’s the birthday of Frederick Banting.  Who chose this?

I’m a huge fan of Hamilton, the Broadway Musical.  In as great as the show is, I always found it interesting that Alexander Hamilton, a man who was not even president, became as popular as he did, and stayed.  Was the biggest claim to fame the fact that he was shot, and died, in a duel?   In the show, the opening number in fact, Aaron Burr announces,…..and me? I’m the damn fool who shot him.  We are lead to believe in the musical that Aaron Burr was much more popular than Hamilton and his life’s love declares that she would spend the rest of her life making sure history remembered Alexander Hamilton.

I guess it worked.  I mean I do not see Aaron Burr’s portrait on any currency.

Which brings me back to my opening sentence.  Who decided that Frederick Banting gains all the attention when poor Charles Best, lacking the PR machine that Alexander Hamilton had, becomes not much more than a foot note in this historic discovery.

Now I’m very aware that it was Banting who spearheaded this endeavor but it just seems to me that there was much work that went into the discovery of insulin.  I mean both of their names are on the patent (there is a third name as well—a different story for another time).  Banting even shared half of his money from winning the Nobel Prize.  Good. But not good enough.

The world will never fully understand the work of Charles Best in the discovery of something that literally has saved the lives of millions of people.

Insulin.

So this February 27th, the birth date of Charles Best, I say we do something in honor of the man most forgotten in a discovery that had glory enough for all.  Perhaps pass legislation on this date that makes the very discovery created to save lives, also affordable to save lives.

I am a diabetes dad.
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Could it be; a Patch that REALLY STAYS? Take a Look and Try for Yourself.

As many of my readers know, I do not use these pages for advertising.  If I find something that can help, solve a problem, and/or make diabetes life any easier, I share. To be clear: I have received no remuneration for this article, I’m sharing about this product because, quite frankly, it just does what it’s supposed to…….stay on.

I hope it works for all, but in fairness I have not seen it on everyone so I can not say 1000% that it will be for everyone.  And of course if you have any hesitation, ask your medical team about the product after you visit their site and find out more.  That said, and the disclaimers aside, if you ever had a problem with your patch you may want to read carefully.

StayPut Medical is a series of patches created by Mike Mangus (founder Pres./CEO) because he heard from so many while in his prior jobs what a problem these patches are/were with the medical devices supposed to stay on, including those devices worn by people with diabetes.  I saw a group of moms talking about StayPut and then I gave a few to people I know; and each one said the patch made an incredible difference.

So now I share with you.

You can click the link above on Mike’s site where you will find a boatload of information,  how this all came about, and also how you can receive a free sample ($1.99 for shipping and stuff).

Good luck and let me know what you feel after you try them.  And also share this on sites where this patch might help others.
I am a diabetes dad.
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A Favor……Perhaps……..Could be Times 4!

As many of you know, I rarely utilize this column for anything more than the articles to hopefully teach and inspire,  But there is this incredible opportunity given to the Diabetes Research Institute Foundation that I’m sure hoping you will join in and help.

The Sola Sweet company, from now until the end of November –Diabetes Awareness Month—-will match every dollar up to $10,000 donated on the site listed below—-we already have over $1600.00.  And to make it even better; we also have another match from a Foundation that will match that $20,000 donation as well.   It’s too good an opportunity not to ask if you would be so kind and help.

Go to this site on FaceBook:
https://www.facebook.com/thesolacompany/
……and donate today.  November is Diabetes Awareness Month, Tomorrow is Giving Tuesday, with everything your $20 donation would be matched to make it $40, and that entire match would be matched again to make it $80.00…..so EVERY donation will be multiplied by 4……please donate today.

Any questions, feel free to shoot me an email at tkarlya@drif.org

Thank you so much for caring so.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Painting Your Child’s Diabetes…..Careful, it’s Not your Canvas

I saw a picture this week, a child in a hospital and the person who posted it wrote that this was their life with diabetes, that no one knew what they went through, and this is their world every day, all of the time.

As I read this story, I felt bad for two reasons……the first, and obvious, is that no one wants to go thorough their life with a child in a hospital for any length of time. The second is that this person truly believed that this IS their ‘world, every day’, how sad.  Our life was not this, ‘every day’.  From my kids’ point of view, yes they have a disease. Yes it sucks.  But they hit it head on and move through, on, and/or around but they do not stop due to this disease………….ever.  They accomplished what any other child WITHOUT diabetes accomplished.

Bad days?  You bet.   Time they want help to take a break from a CGM and/or a pump?  Of course.  But for the most part they realized the only way they can move forward is to……well, move forward.

If I was a child of fourteen-or-so in a hospital stay from  a low blood sugar, I’m not so sure how thrilled I would be if my dad posted a picture of me on social medial for the world to see.  If you think that it does not matter to your child, you better think again.  And if you think that they do not see things like that on social media……..you better think about that again as well.

It’s a tough balance because; for whatever diabetes charity one is involved, it’s important to move people to give and help those causes, and that is great, but also do not be afraid to ask your child what they think on the picture you are about to post or the story you are about to tell.  Ask them.  And listen to their answers.

When I write or I post, I have guidelines from my kids.  Twenty-six+ years into this I still remind myself daily that I do not have this disease.  I do not know what it’s like…..not for one second.  I respect their space, their feelings, and how they want the world to see their diabetes.  It’s not my disease.

I can speak from/as a parent but that is all I’m allowed to speak about without asking them.  Richard Rubin, one of the leading psyche-social-aspect-gurus of all time taught the meaning of the balance of respecting our kids and helping them understand that their life is not ‘just an open book’ because we think it should be.

Remember this the next time you are trying to make a point about this world of diabetes.  Know that this word is your child’s world 24/7/365……if you think you own it, your children will never learn to.  And the faster they take it on as their own, the better you will all be.  Help them through ALL OF IT but don’t assume you have rights without asking them.
I am a diabetes dad.
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Tennis Balls and Syringes; How the Diabetes Ball Bounces

Here we are for our 27th Diabetes Awareness Month.   Ahhhh November.  The thing I always share with parents is the fact that no matter how much time we spend on this journey, whether diagnosed last week, or 26 years ago, it makes sense to look back to the beginning and realize just how much we learned.

Because whether it is a short time, or a long time, one thing I know to be true is that no matter how much time passes, we gain knowledge every day.  Don’t we?  We start with the realization that we have no idea what this disease is about, and how to handle it, to meeting with newly diagnosed parents sharing with them that they too can do what we all have done.

One-day-at-a-time—–and breathe.

The other day I saw a tennis instructor working with a young pupil.  A basket full of tennis balls accompanied the teacher.   I’m not a tennis player and know little about it other than what I learned the times I tried it in my youth.   This was a new visual for me.  Tennis ball after tennis ball after tennis ball went from instructor’s racket over the net to the student’s racket.  It clearly was a practice they had done hundreds of times because the student knew, without a spoken word, when to move to different parts of the tennis court, or to use a backhand or overhead swing.  It was fascinating to watch.  Hours and hours and tens of thousands of tennis balls……tennis ball after tennis ball after tennis ball, again and again and again.

Every now and again the student would get frustrated because a shot was missed.
“Grrrrrrrr” came the noise.
All for one goal—-perfection.

We, too, do the same thing when it comes to our children and their diabetes management.  Again, and again, and again we try, striving for that perfection.  Perhaps we need to give ourselves a break sometimes because we are going to be right back at it tomorrow, and the next day, until such time that the ‘break’ we wait for arrives and this disease is cured once and for all.  But until such time it’s injection after blood check after treating a low after injection after blood check after treating a low after injection after……..

“Grrrrrrrr”.
I am a diabetes dad.
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Our Child’s Scariest First Dive

This may not be big news to anyone, but my little guy gave himself his own shot today.
Point: This IS BIG NEWS to anyone who understands that our children, once diagnosed, not unlike us; face incredibly ‘firsts’.  To me whether you are jumping off a cliff into water 80 feet below or taking an injection of insulin for the firs time——the unknown….is just that…..unknown.

Having the courage to say, “Mommy, I want to give myself my own shot today.”  Well to me, that is a huge step in the life of a child living with diabetes.  To begin to say, “This is my disease, I want to take control of it.” That’s huge and is a big step in any child’s life.

We, as parents, as much as we may try, have no idea what this might be like.   Think about it.  One is diagnosed.  Months go by and hundreds of blood-checking and insulin shots have occurred in your little one’s body.  They watch, but they really do not understand everything, they might nor even understand much at all.  But something clicks in their little minds; Why is mommy doing this to/for me each and every time, numerous times a day?

They ask themselves that question.  And each time, for days and weeks, they watch as insulin is given.  And at some point it hits them; why does mommy have to do this, I can do this.

Then, for a number of times, they ask the question inside their own heads at first.  Not sure what it means nor what you will say when they ask.  Again, again, again, and again they watch and the words are on the tip of their tongue.  Then, as if a voice from way down deep inside pushes their tiny thought our of their little mouth;  Can I give myself my shot today?

The world stops dead-in-its-tracks as parent and child stare at each other.  Almost as if the disbelief from the one hearing it,  is matched by the disbelief of the little one saying it.   They stare at each other.

Mom will speak first.

Ah……um…….sure honey.  If you want to try it.  Sure.

Mommy smiles as she hands the insulin to the waiting child.
The child has seen it hundreds of times, they know what to do.
Still, there is that moment.  That moment of the unknown.  The child does it, takes the injection, lifts the needle out and looks square into the eyes of mommy.  The child smiles.
See mommy I knew I could do it.
Mommy smiles and hugs her child tightly.
Yes baby, I knew you could.

The child runs and goes to continue playing outside with the incredible feeling of accomplishment.  The first step in taking on their diabetes.

Mommy smiles until her child leaves the room and is outside playing again.
She drops on the bed and cries her eyes out.

I am a diabetes dad.
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A Small and Gorgeous Country…….We Could Learn Much

I just arrived back home from vacation.  Once a year I try to ‘get away’ as they say; because a battery drained is no use unless it is charged, this charges the batteries.
While visiting the country of Jamaica, two things truly stick out in my mind.  One was  speaking to/with the hierarchy of where I was staying as their ‘brand’ is located throughout the Caribbean and might be able to play a valuable role in our (the Diabetes Disaster Relief Coalition) efforts in helping people with diabetes during hurricane season (okay, so I don’t ‘turn off’ completely) in the many islands that seem to get hit the most…..we will see if these conversations become fruitful, time will tell.

The second thing that truly stuck with me were the people of Jamaica.  What they lack in size, they make up with pride.  As one travels the country, it is quite clear that money is not plentiful, possessions are not plentiful, and many parts of the country have much less than others.   Workers, every-day people, supervisors, drivers, elected officials; what is clear is that, despite the lack of what many of US would call ‘our rights of possession’, these people do not need and hold dearly their right to LOVE their country.  It’s no wonder their Country’s motto is so well accepted, Out of Many, One People.

I had the wonderful opportunity to hear from so many who call Jamaica their home.  One woman shared that she was not in favor of the political power now in control of the government of Jamaica.  “There are three, really two, political parties in my country.  I did not vote for this one.”  When I shared the political divide in our country she continued, “…yes, of this we are aware.  But in my country, so rich and full of so many things, no one person could ever take away how I feel for my country.”

No one person could ever take away how I feel for my country…..let that sink in a bit.

It struck me that, even in our diabetes community, we sometimes forget how much we do, actually, have.  We surely do complain at the drop of a hat on something being unfair, and that is within our rights.  But when we look upon landscape of all things diabetes, and for that matter in our country, have we forgotten how blessed we are? Does one person, or one entity, control us that much that we forget what we DO HAVE? Does one person or one entity stand that strongly that they hold us to stay focused on only what is bad and what divides us; whether it be the cost of our medicine or the system of politics in which we disagree.

One transportation driver shared with me that he was not so sure why we allowed the bitterness to even exist.  “In my country, mon, we do not understand why Americans are so angry when they have so much blessing.  Why does one thing, one event, or even one person, get all the attention. With this, we do not do here. Life is a celebration, mon.”

I could write on and on.  But my question is a simple one; which one of these control us; our anger or our love for all that we DO have?  Do we remember our own country’s motto which we have all heard for years and years……E Pluribus Unum? Do you know the translation of Out of Many, One.

Seems our friends of the sun drenched tourist destination of Jamaica, small and poor as they are, understand it a bit better than we do.   Perhaps we should follow their lead on knowing out of many, we truly are one……..or should try harder, at least, to be so.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

Halloween…..R U Afraid of Diabetes and Candy?

Many have asked me to rerun this article—here it is with just minor changes.

This month is Halloween.  Halloween means so much to kids.  Our kids with diabetes are no exception.  I remember when Kaitlyn was younger and many neighbors bought stickers and toys for Kaitlyn; “…I did not know what to get for her”, was a common comment.

People can surely be wonderful.

We were discussing this weekend, over coffee, that each year there was no doubt with all of the walking that she would do that ‘going low thing’ would not only occur but almost always at the exact same block each year.  She would carefully choose something out of the bag. (of course juice boxes and ‘stuff needed’ were readily available ‘just in case’ as well—but letting her choose something from the Halloween Trick-or-Treat bag…why not?).  We would wait a few minutes and continue on.  Fun and frights continued.  On this day our kids strive and want to be just like all the others kids…….AND THEY  SHOULD BE.

I remember many conversations from people who do not live with diabetes in their household how much Halloween must be a disaster for us, having a child “who cannot eat candy”.  People thought that we would deprive our child of this incredible right-of-passage.  Those of us ‘in the know’ know better, don’t we?

If you do not know….you should learn how close to normal you can make this day.  Our kids are not driving close to a cliff during this day.

Of course we would control the candy; some gave money in exchange, some put the candy outside for the GREAT PUMPKIN to take and exchange for a toy; but we always controlled what the kids ate and went through it all like every other parents do each year.

We all do those things.

There are many things that you can find online about kids, diabetes, and what to do.  Today I want to check in with where YOUR head is at.  You should not be afraid (pun intended) of this day and you should spend the time enjoying your kids while they enjoy the day.

Diabetes never stopped us on Halloween and it should not stop you either.  Go and enjoy.  This is a holiday for kids to enjoy and with a little knowledge and a little ‘smarts’, the only frightening thing about the day should be at your front door when the doorbell rings.

Be afraid……..be very afraid?   Nah…….enjoy; Halloween is nothing to ‘spook’ you.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.