Dear 2018……..uhmmmmm…..’gotta minute?

dearsantaletter-outDear 2018,

Nice to meet you and we look forward to your arrival.
You may not know me fully but I’m pretty sure we both know of each other well enough from others, and I was told to contact you for the things that might be important during this upcoming year in my world; which is a world of diabetes.

I get it.  You’ll have people with long lists regarding the state of affairs here and abroad.  You will have people screaming on both sides of what is correct from their standpoint which they will insist is in the best interests of all…….sort of impossible, I know, but they will insist.

You will also have people asking for incredible mountainous requests for sick relatives and dire situations.  All-in-all, I do not envy you your situation.  Not only will you not make everyone happy, it’s my guess you will make only precious few as happy as they may want.  Powerful is the individual who recognizes that they cannot do anything about what enters their world but it’s what they do with what comes along that creates the path they walk.  We are each faced with that task.  Life is life; and no matter where we are in this world…..we are given life to deal with and manage.

With all of this in mind, it’s also my understanding that you take requests. It has been made clear to me, 2018, that you are not Santa Claus but that request can be made and you will sort through and figure out what is best and that asking is completely encouraged.

Okay…….so here we go.  This is my request for our diabetes world.  Others may chime in as needed.

First and always, I want a cure.  I’ve been asking this for some time and although I have not been one of those who point and say they have been promising it within the next five years (who are those people anyway?), I think it’s time.  Or, at least, some REAL significant progress toward that end.  Some clinical (human) trials in kids…..something promising please.

We also need some stability in the insulin world when it comes to pricing.  Either allow some of the cases to come to trial that make/prove definitive and serious allegations to force lower costs, or have someone come up with a generic brand that will shake the foundations of those who think they control all costs—-the prices are too high, 2018, please look into this matter.

Please help us make a REAL dent in our journey to stop the missed diagnosis of T1D.  No one should die or be missed diagnosis that in turn causes major havoc in people’s lives.  IT’S JUST SO AVOIDABLE, 2018, it’s almost ridiculous.  Thank you for the continued efforts of so many—-it’s MAKING a difference but we need to really make this a national initiative.

Health care costs.  Okay here is the deal, us in the diabetes word ARE NOT THE ONLY ones asking about this 2018.  YOU HAVE GOT TO KNOW BY NOW how important this issue is for so many causes, so many people, and so many reasons?  A group of fat cats in our Nation’s Capitol can no longer be allowed to merely make changes without fully understanding of what the impact will be…..it’s a mess 2018, please both tend to, and fix, this situation.

Management tools.  2018, I am not just  referring to a device that reads blood sugar and dispenses insulin; I’m talking about all management tools.  There needs to be a healthy array of available equipment and not controlled by just one or two companies.  This just makes no sense.  Never before have people (patients, loved ones of patients) been so nervous that what is available today will not be available tomorrow.  Medicare and Medicaid need to cover what is needed and we all need to know that what is needed will always be available.  It’s just not fair.

2018, these are all practical and needed request and understood, they are all tall orders.  But I have faith in you and believe in you.  From the fiasco of diabetes issues 2017 left behind, my hope is that you are better, stronger, and more aware of how to navigate the waters-of-need for all those who do not want to just live with diabetes, but thrive with it.

Good luck 2018, we be in touch to see how you are doing.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

The Night Before D-Christmas—2017

Santa Claus magic dustWith special apologies to Clement Moore. I present what has become a DiabetesDad tradition……an updated, ‘Twas the Night Before D-Christmas for 2017

‘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; and things we did see,
Like MiniMed’s Hybrid they call the 670G;
Away to the D-Community to see who was a hero on fire,
It’s those who battle T1D who really inspire

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.

It was tough this year as great ones left out the door,
Just some were Keith Campbell and Mary Tyler Moore.
Their voices were loud and their voices were clear,
They will surely be missed, wish they could stay near.

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.

Although some tough times happened and we were sad,
Animas closing, costs too high and true, we were mad.
But onward we go staying positive all the way,
There’s so much to do, and it all starts today.

Fighting for many and trying to be fair,
Coverage for one, coverage for all, even with Medicare.
Human trials, products, not just for our self,
Diabetes tattoos, even CGM for Elf on a Shelf.

Hurricanes were cruel where they would roam,
Far away sure, but also at home.
Many worked hard helping where they could,
So many doing and helping as they all should.

Many stepped up to help and grabbed at the ball,
Helping some was no good, it had to be all.
Helping others and giving so very deep,
Hours and days they all went and went without sleep.

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.

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

Annual Tradition Continues—–Your Child and a Personal Santa Letter

santa-from-videoSANTA CLAUS CAN PEN A PERSONAL NOTE TO YOUR CHILD THIS CHRISTMAS
Jolly holiday 7th Annual fundraiser benefits Diabetes Research Institute Foundation
NOTE: Your child does not have to have diabetes to receive a letter from Santa (cute video—click picture)

Yes, Virginia (and Emma, and Maria, and Max, and Willie…), there is a Santa Claus. To prove it, Ol’ Saint Nick himself will send a personalized letter – complete with a North Pole stamp – to any child, in any part of the world for a minimum donation to the Diabetes Research Institute Foundation. This jolly holiday fundraiser is up and running and you can click this SANTA CLAUS to learn how to send a letter and make a donation. Your child receiving a personal letter from Santa is certain to light up faces brighter than the star on the tree. And of course if you do not know of anyone who would want a letter from Santa….you can make a donation to just help the DRI continue their collaborative efforts to end diabetes once and for all.

Click here to learn more about the Diabetes Research Institute Foundation.

The personalized letters, which can be requested by parents, grandparents, aunts, uncles or any other family member or friend, can include all sorts of information; like a reference to any toy, game, iPad or techno-gadget on the child’s wish list or even mention something about their pet. Santa can even encourage them and that he knows how well they have been trying to manage their diabetes as well. The fundraising campaign is open to all families everywhere, not just those affected by diabetes.

To get all of the letters out to children by Christmas day, a legion of Santa’s “elves” are standing by around the country, according to volunteer chairwoman Marie Jarcho.

“We had a tremendous response the last seven years. This is a wonderful and easy way to brighten a child’s Christmas and they loved it. The more information that parents or others supply, the more personal Santa’s letter will be,” she said. “…… it is my sincere hope that people will give what they can to help the Diabetes Research Institute find a cure.”

After the debut event, one mother wrote that her child was so thrilled with the personalized letter that she slept with it every night until Christmas. The DRI Foundation is hoping for an even greater response this year.

To send a child a letter from Santa Claus, JUST CLICK HERE or you can click the picture to see a really cute Santa Video about the personalized letters. The deadline for participation is midnight on December 11th in the USA and December 6th for any area outside the USA.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: RYAN REED WINS IN DAYTONA…..Diabetes at 187 mph!!!!!

Ryan Daytona 2017I have no voice from screaming at the TV.
Car accident after car accident.
Two involving Ryan.
But still, he kept coming back.
And kept coming back.
In a race that went into overtime….
Ryan Reed won at Daytona tonight in one of the longest races ever on record.

BAM TAKE THAT DIABETES.

My heart was pounding through my chest as I screamed at the television watching this young man who not only has won over an entire diabetes community….today he beat three powerhouses with incredible driving to win….and win over the racing community with INCREDIBLE DRIVING………and won big in Daytona.

And yes he mentioned the wonderful folks at Lilly who sponsor him and yes, he mentioned that it is a big win for people like him with T1D.  He again showed poise, grace, and deflected all attention to his team.  Congratulations to his family, his team, and Lilly Diabetes for sticking with a winner.  Nice job, all.

But it’s Ryan at the wheel.  It’s Ryan on the gas.  It’s Ryan checking his blood sugars at 187 miles per hour.  It’s Ryan at the checkered flag.
LIVING with diabetes. DRIVE that home to your kids.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Good-Bye 2016….and Thank……YOU!!!!!!

calendar-page-offWell tear the page off the calender, 2016 is history.  Much has surely happened this year and as I reflect on it, I realize that so much good happened in the year.  I know many feel differently, and that is fine as they are entitled, but I’ve never been one to stay focused on one item or one event.

I survived being at 9/11, I survived my child being diagnosed with diabetes, I have survived losing a brother (in law), a father, a father and mother-in-law who I cherished, a second child being diagnosed and an entire list of items that will depress you to know end–and many people over the years have been in office who I did not want or who I wanted…..and I will be danged if whatever this year bought will make me react any differently.

The sun will rise tomorrow and with it a new day. And it is THAT way in which I live.

I will choose the GREAT things that happened over the year in the battle against undiagnosed Type 1 Diabetes.  I’ll cherish Beyond Type 1, Insulet, dPac, Susan Weiner, Kim May, Michelle Berman, Debbie Healy, Bennet Dunlap, Little Reegan’s Family, Kycie’s Family, Elizabeth Stein, DiaBEAT THIS!, and those who have stepped on the gas pedal and chose to share their lives to end these occurrences and, in some cases, when they were even victims themselves.  I’m grateful to the many who gave a platform to spread the word.  I’M GRATEFUL TO THOSE WHO EVEN HUNG A POSTER TO SPREAD THE WORD.

I’ll cherish those advancing the better treatment for those who live with diabetes every day.  I’ll cherish those organizations who continue to help people, advocate, and spread the word.    I’ll cherish those who despite great odds, continue in that search for a cure. I’ll, personally cherish, a new granddaughter, an engaged daughter, a move to a new home in a new state, and always my wonderful family.

And I will always and in all ways cherish you.  You who inform me, you who challenge me, you who teach me, you who believe in just ‘not doing nothing’, you who choose to make a difference, you who are my brothers/sisters-in-arms in a battle none of us want to be part.

If 2017 is not what you want it to be, MAKE IT what you want it to be.  We cannot do anything about what may come our way but we can certainly control how much it impacts us.  May 2017 be happy and healthy and may your inner wishes come true. Thank you for being part of my 2016, I look forward to what 2017 may hold for all of us.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Twas the Night Before D-Christmas 2016

santa-moonWith special apologies to Clement Moore.   I present a tradition……an updated, ‘Twas the Night Before D-Christmas for 2016

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The stockings were hung by the chimney with prayer,
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; the so much good and fun,
Seems monthly there was news at Beyond Type1.
Away to the news to see who was a hero of fire,
It’s those who live with T1D who really inspire

As costs continue to rise on everyone’s supply,
So many wonder how they’ll get by.
D-bloggers continue to write of these capers,
It certainly can’t be left to all the newspapers.

While many wrote of Santa’s goodies in his sack
Many doing much more like those from dPac.
To those with diabetes these really are not funny,
You’re playing with lives; it’s not about money.

As parents search for the docs and schools that really do care,
So much about this disease just doesn’t seem fair.
But as we turn and realize the continual fear,
I have some wishes for so many during this year.

When you look outside at the fresh fallen snow,
Or out at the sea where cold you don’t know,
Think of those who inspire and soon you’ll see,
Those things have changed in the past and will continue to be.

Innovations like getting supplies to those in foreign lands,
There is Life of a Child, IDF, and a Foundation of Hands.
There were great ideas to help our kids remember,
Of those in the fight like Project Blue November.

We work very hard for a managed d-Life to be,
And there is much help like at CWD.
There was JDRF/Medtronic approved hybrid closing the loop,
And ADA’s Dancing Steps was really a scoop.

There are innovations and those like Tide Pool
And DRI’s BioHub news continue to gain fuel.
There are so many camps that continue to say,
Spend a week with us for an even better today.

From Faustman, ViaCyte an IRB survey from Glu,
Stopping missed diagnosis to end candles of blue.
So as the year ends and criticisms comes quick,
Good things will come, and not all from St. Nick.

So listen carefully as you think of all that is run,
There is so much more work that needs to be done.
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 will stop all when only they 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 is Santa’s toy bag for sure,
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.
Please visit my Diabetes Dad FB Page and hit ‘like’

Your Child can Receive a Personal Letter from Santa—-6th Annual Tradition Continues!

santa-from-videoSANTA CLAUS CAN PEN A PERSONAL NOTE TO YOUR CHILD THIS CHRISTMAS
Jolly holiday 6th Annual fundraiser benefits Diabetes Research Institute Foundation
NOTE: Your child does not have to have diabetes to receive a letter from Santa (cute video—click picture) 

Yes, Virginia (and Emma, and Maria, and Max, and Willie…), there is a Santa Claus. To prove it, Ol’ Saint Nick himself will send a personalized letter – complete with a North Pole stamp – to any child, in any part of the world for a minimum donation to the Diabetes Research Institute Foundation. This jolly holiday fundraiser is up and running and you can click this SANTA CLAUS to learn how to send a letter and make a donation. Your child receiving a personal letter from Santa is certain to light up faces brighter than the star on the tree.  And of course if you do not know of anyone who would want a letter from Santa….you can make a donation to just help the DRI continue their collaborative efforts to end diabetes once and for all.

Click here to learn more about the Diabetes Research Institute Foundation.

The personalized letters, which can be requested by parents, grandparents, aunts, uncles or any other family member or friend, can include all sorts of information; like a reference to any toy, game, iPad or techno-gadget on the child’s wish list or even mention something about their pet. Santa can even encourage them and that he knows how well they have been trying to manage their diabetes as well. The fundraising campaign is open to all families everywhere, not just those affected by diabetes.

To get theall of the letters out to children by Christmas day, a legion of Santa’s “elves” are standing by around the country, according to volunteer chairwoman Marie Jarcho.

“We had a tremendous response the last six years. This is a wonderful and easy way to brighten a child’s Christmas and they loved it. The more information that parents or others supply, the more personal Santa’s letter will be,” she said. “…… it is my sincere hope that people will give what they can to help the Diabetes Research Institute find a cure.”

After the debut event, one mother wrote that her child was so thrilled with the personalized letter that she slept with it every night until Christmas. The DRI Foundation is hoping for an even greater response this year.

To send a child a letter from Santa Claus, JUST CLICK HERE or you cn click the picture to see a really cute Santa Video about the personalized letters.   The deadline for participation is midnight on December 9th in the USA and December 6th for any area outside the USA.

I am a diabetes dad.

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

Discipline, Diabetes, & Boundaries…….Thin Line; But a Line None-the-less.

boundariesI said the same thing to each of my children once they obtained their license;  “if you tell me you are going to be home at 12:00 midnight and it is 12:01 am and you have not called, I will think you are dead in a ditch someplace.  That’s drastic I know, but that’s what I will think.  So if you will be late…….call.”

Now I’ll be the first one to tell you that the statement is both drastic and over the top, but for the most part it worked (well almost).  Boundaries.  Our kids respect them once they are laid down.  Should they not be followed, there was a ‘price-to-pay’.

Good thing about getting a license is that once you taste the sweet nectar of driving, you hate walking.  Taking the keys away was a quick way to get a point across. Interesting how much that statement becomes exponentially higher when your child is dealing with diabetes every minute of every day, isn’t it?  When our kids with diabetes ‘miss’ a curfew, well that seems to have a whole new meaning doesn’t it?

Well not really.  It shouldn’t.

If one of my kids, dealing with diabetes, needed to stay someplace longer to deal with a low, or a high; we looked at it no differently than “I lost track of time”.  Call.  I don’t care the reason, call.  Once you are feeling better and you go to start that car, call and fill us in.  Once a pass, twice they saw me irritated, and three times they lost privileges…..or something like that.

I always lived by Richard Rubin’s rule of giving choices.  Rarely were any of my kids surprised that they were ‘punished’.  It was just not my style.  Now doing something really stupid is a different story, and I’m glad there were not too many of those in our lifetime.  But in our house it was explained that you needed to do A, or B would happen; and always I would ask, “Do you understand?”

If our child stayed someplace to treat a high or low and did not call, they did not hear it from me regarding their diabetes.  When they arrived home they heard it from me about not doing what I asked; which was to call.  Not because of their diabetes, but because they did not do what we agreed upon…..which was to call.

It’s not our kids’ fault they have diabetes.  They need to live life as…..well kids.  Richard taught us always to be careful, and that indeed there was a way not to mix the two when it came to discipline.  It wasn’t about eating something they were not supposed to eat, it was about disobeying.  Set the boundary line, give choices.  There are differences.  Act so you don’t need to react.

How do you handle such situations?  Share, please.  These things are never easy in this world of diabetes…………………are they?
I am a DiabetesDad.

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

You Can Rest Assured…..a Storm WILL ARRIVE.

Storm satellite viewThere’s a storm coming.  If you live on the east coast and you did not see the weather report (for whatever reason THAT would happen, I have no idea), you would know a storm was coming because you cannot find bread or milk on any grocery shelves.  That’s what people ‘do here’ when a storm comes.  They buy bread and they buy milk……oh yes, they buy shovels……..lots of shovels.

Honestly you would think no one owns a shovel in the northeast because every time a storm comes, stores place hundreds of shovels at the front of the store and THEY ALL SELL.  People, What do you do with your old shovels?!?!?!?!

There are many places where you can read how to prepare for a storm when it comes to diabetes supplies and food.  I’m not gong to speak about that today, but I am going to talk to you about diabetes storms.  On our news of late, they have been talking about this snow storm for days here on Long Island (I can hardly wait until we complete our move to South Carolina).  We all know it’s on the way.  We can prepare.  If we are not ready, it’s our own fault.

Diabetes storms can not usually, nor so easily, be predicted.  What is a diabetes storm?  Well like the weather, there are different types of diabetes storms in my mind. There is the ‘cannot find a constant blood glucose number’ storm; the device malfunction storm; the cannot get the glucose number below 240 storm, there is the cannot get the glucose number above 50 storm, there is the no-matter-what-I-do-my-child-bottoms-out-during-the-night storm and more.

There is also ‘the perfect storm’, that is,  where multiple things happen at once like a device breaks as the stomach flu arrives type-thing; clearly we have our share of storms to deal with and many times there is no Diabetes Weather-person out there to warn us what is coming toward us over the next few days.

But the storms come, don’t they.
And in most cases they also go, usually, don’t they?

I think the best way to brace yourself for a storm is just to recognize what you are dealing with, recognize what exactly is going on around you. And as soon as you realize the situation, ask a lot of questions because many people have been through these storms many times.  Don’t be in a diabetes storm in a little rowboat on your own; when people are waiting out there and have navigated ocean liners of choices through typhoons of diabetes storms.

Your ‘radar’ warning is the online community in many of these instances.   Surely you need your medical team of advice and guidance but there is not a parent out there who has not been through what you are about to undertake.  Ask.  Seek information.  Call your doctor with what you find out.  Chart a course.

Being ready for these instances are just as important as making sure there is enough juice for a low and enough insulin in the refrigerator during a snow storm.  No one likes a storm.  But just as there are weather people to predict the storm coming, there are parents and ‘people with diabetes to help guide you.  The major difference is that we probably have a better record of predicting what to expect in a diabetes storm, than television News Weather Reporters have in guessing how many inches of snow will fall.

I am a DiabetesDad.

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

 

Pump Malfunctions??…..Do You Panic?……There’s Just No Need To!!!!

PanicA man stands at the bottom of a stopped escalator.  Not a long escalator, mind you, just normal-one-floor type.  His face is red with anger as the escalator comes to a stop.
“I cannot believe this, I’m so late.”
There is a little boy behind him who says, “A broken escalator is just a staircase.”
With that, the man walks up the stairs.

I saw it again the other day.  A mom was pretty upset that her child’s insulin pump broke and the torment began of waiting until another one arrived.  I read with…..well…..a little disbelief to be honest with you, as she was so perplexed on what to do.  I’m reading this thinking to myself; “Uhmmmm…….give your child a shot.  What’s the biggie?”

Two immediate thoughts were that one, I’m getting older.  When we started in 1992 pumps were not in use as they are today.  My second thought was a bit perplexing.  Have we ‘gone-the-way’ of the Dodo Bird (extinct, ask your parents) on the basic needs of daily management.  My friend Richard Vaughn can share, more than I, what it was like ‘back-when’ to deal with diabetes (his diabetes journey of 70ish years is one of the most inspiring you will ever know—keep an eye out for an upcoming book).  But even since 1992 in our own lives, the times, as they say; ‘are-a-changing.’

I have heard for some time now about this thing called an artificial/bionic pancreas and how it will be the closest thing to a cure.  For the record, the same was said when insulin came along, when ‘long-lasting’ insulin came along, when the insulin pump came along, and when the cgm came along.  I get what is meant by such sayings, each of these management tools were/will be a giant step forward in making the management of diabetes ‘just that much easier’ according to many.

But these are all tools that can ‘go-derailed’.  We have to be ready when that happens.  We have to be versed on what to do.  An expert does not just have the ability ‘to do something’, they also have the ability to ‘right-a-course’ when it starts to go wrong.  When it comes to the welfare of our children, nothing less than expert will do.

Don’t be afraid to get back to the basics when it comes to diabetes management.  Make sure you know what to do ‘when the lights go out’.  It may be a tad inconvenient to go back to shots should a pump malfunction, but if your entire stomach turns at the thought of that issue, you may want to take a refresher-course on what to do.  If your child sees panic in your eyes and/or senses fear in what you are doing, guess what is going through their minds?  Most assuredly, at some point your escalator will stop, it will be so much easier to know how to walk-them once that happens.  It’s all how you look at things.

I am a DiabetesDad.

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