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’.

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’

NEWSBREAK: Animas Vibe Receives FDA Approval for Children Ages 2 to 17.

animas vibe deviceI received the following email from Bridget Kimmel, Senior Manager of Communications & Public Affairs for Johnson & Johnson Diabetes Care Companies Animas Corporation & Life Scan, Inc.  I know people have been speaking about this device and I share with you what was sent to me without edit.

I’m pleased to share that FDA has approved the use of the Animas® Vibe® Insulin Pump and Continuous Glucose Monitoring (CGM) System for the management of diabetes in children and adolescents, ages 2 to 17.

The Animas® Vibe® System was the first integrated system with Dexcom G4® PLATINUM CGM technology and is the only such system available in the U.S. for pediatric patients as young as age 2.

As an integrated system, the Animas® Vibe® System allows patients and their caregivers to view glucose data and administer insulin right from the pump, making it easy to fine tune insulin delivery to help manage their diabetes.  We know that effective glucose management early in life supports better health outcomes in adulthood; therefore, the Animas® Vibe® System is a great step forward in helping children and their caregivers in the U.S. take ownership of their diabetes. 

Expanding the global presence of the Animas® Vibe® System, along with providing solutions for children with diabetes and their parents, has been a top priority for Johnson & Johnson Diabetes Care Companies (JJDCC).  It’s been our goal as a company to not only develop the best treatment solutions available, but also ensure that every member of the diabetes community, including children, may access these tools.

For more details on the FDA approval, please view the press release we issued today here.

Orders for the Animas® Vibe® System are currently being accepted, with anticipated shipment to patients beginning this month. In the meantime, if you have any questions, please don’t hesitate to e-mail me or give me a call at 215-688-6033.

I am a DiabetesDad.

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

 

 

Are You a Basal-Tears, or a Bolus-Tears-Kind-of-Person; in Your Diabetes World???

insulin dripI was engaged in a conversation yesterday with a good friend and we came up with the following question; ‘When it comes to diabetes, are your tears via a basal-tear rate, or a bolus-tear rate?”

When you think about everything that happens in our diabetes world, do you sort of cry a little bit many times or do you work to keep everything in moving forward and once in a while the tears just pour out as if your eyes are just bolusing-tears?  A lot of little cries….or one big cry occurring when needed.

I’m absolutely amazed that no matter how positive-a-life I try to make sure our kids have, out of nowhere it seems…….bang; tears.  So I’m definitively a bolus-tear-kind-of-guy.

I also know that it’s okay.  It’s good to clear it out sometimes.  A release.  I know some people get sad every day, perhaps even cry a tear or two as well.  They are a basal-tears-kind-of-person…..a little, many times.   Clearly no one enjoys any of this, but also make sure you smile through those bolus/basal/tears every now and again as well.

Smile at an accomplishment, a joke, something ‘gone-good’.  When they come, make sure you enjoy those things as well.

My mom tells me that it’s because of my heritage that I read the obituaries every day.  It’s not a morbid thing (ever notice everyone dies in alphabetical order….except in Florida), I just check it as I read the news.   I’m sure a professional would tell me that it ‘means’ something that I do, but to me, it’s just checking out what is happening in the world around me…..another page to the news, as it were; for me.

But here is my observation.  Every single listing had a life.  Whether they were good or bad, happy or sad, rich or poor, in perfect health or suffered forever; there they all and what they leave behind is just that…….left behind.

My point?

On this earth we all have just one shot to redo anything everyday.  Think about that sentence.   I will always choose to live this life and grab every ounce of enjoyment out of it as possible.  For me, and for others.  If we can all try to leave this world just a tad better for others as well as ourselves than how we found it; that’s a life worth living in my mind.

So I may be a bolus-tear-kind-of-guy when needed……but during all other times, I choose to be an ocean-full of grabbing this life for all the wonder, laughter, and good it does have to offer, even with diabetes.  Come swim with me.

I am a DiabetesDad.

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

 

NEWSBREAK Report: T1D in Children Rising; and a Woman You NEED to follow “Closely”.

Going upKelly Close’s DiaTribe published a very interesting finding based on a recent study in Diabetes Care……it states (according to DiaTribe);
“……..more US children and adolescents have been diagnosed with type 1 diabetes in recent years: the disease’s annual prevalence in a large, insured population increased 53% between 2002 and 2013, from 1.48 to 2.33 cases per 1,000 people. The study used data from insurance companies to survey the rate of diabetes in ~10 million US children and adolescents younger than 18 years old, so it does not tell us how diagnoses of type 1 may be changing in adults. It is not clear why type 1 diagnoses are increasing so rapidly.”

Now if you look at those stats a little more closely, it used to be that 1.48 cases per 1,000 were diagnosed with type 1 diabetes (T1D), and the new study shows that it is now 2.33.  Now in dealing with percentages, that means that almost an additional person per 1,000 cases is being diagnosed with T1D.  THAT’s alarming.

You can read Kelly’s full assessment/article by clicking here.

Click the link and read her article; pay close attention to her conclusion.  It will shake your cage and reinforce what many have stated for some time.  And if you do not follow her, you should.  Kelly has an incredible talent to call things as they are, usually with little sweetener (pun intended).

If you do not know Kelly, I can tell you that she is a shoot-from-the-hip kind of writer; and probably one of the most knowledgeable people on what is happening in our diabetes world.   Little, if anything, gets by her and/or her team.  She has taken her battle with diabetes (of over 25 years) and her desire to know every/any-thing she can, and after she ferociously learns for herself, she graciously shares with the world what she finds.

Kelly is also the same person who meets you with a warm smile (one of the biggest smiles I know) when you see her at one of the many conferences dealing with diabetes, taking place annually.  It’s not ‘unusual’ to see her and/or members of her team running from one session to another to capture, for us, what is going on.

Diabetes.  She writes about all aspects of diabetes.  ALL.  You may not agree with everything that is written, and truth be known, you shouldn’t.  I have often felt that if you want to be amused, you read the comics; if you want to learn, read writers who challenge you to think and to learn for yourself.  Writers should open a dialogue; and Kelly is the master.

So if you are always trying to figure out what is real and what is not; what are facts and what is rhetoric; what is the truth and what is mere fabrication….give yourself a New Year’s gift and follow Kelly’s DiaTribe more closely.  In a few months you will feel more educated, and in the know, about what so many merely think they know.

I am a diabetes dad.

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

 

 

A Message for You!!!!

Happy New Year 2016A really good friend wished me a happy New Year and stated that the hope was that all my wishes would come true in 2016.

Interesting concept.

I found myself asking if I had ‘all my desires’ as a bucketful of wishes or is my wish the same as it was on September 26th, 1992, and only to be doubled on March 20th, 2009.  The same wish every time I blow out my birthday candles.  The same wish anytime I wish upon a star.  The same wish I have every time I break a wish bone.  The same wish in my nightly prayers.

A cure, for my two children.

It’s a promise I gave my kids and it’s the foundation for everything I do.  I’m deeply involved in this diabetes world.  I wish I was not, but I am during almost every minute of every day in some shape or form.  I’m energized by this diabetes world around us.  And in as much as I believe in the efforts of the Diabetes Research Institute, being involved as I am, also allows me the privilege of seeing so many wonderful things out there which I see with an open mind with a drive to learn more.

I see what I see, through your eyes as well.

I thank you for that.  You teach me so much.  You have opened my eyes to so many worlds of research, initiatives, efforts, education, management tools and energy to make this diabetes world palatable that I, otherwise, would not have in my life.  Your energy drives me.  Your knowledge challenges me.  Your passion humbles me.

Thank you for allowing me to share in your life.  We are in this together and our one and only competition must always be; diabetes.  To make a difference in this diabetes world and to just ‘not do nothing’.

I wish all of you the best 2016, and may it take you one step closer to whatever it is you seek in your life; for you, for your family, and for those you love.

Happy New Year!

Much love, respect, and admiration always,
Tom

I am a diabetes dad.

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

 

Tyson’s Family Shares a Story on Saving a Life……..Are you ANGRY ENOUGH…….to Help?

Tyson IrbyAs this year ends, I am still driven by how far this year has taken us in the battle against missing the diagnosis of T1D and the diagnosis while in DKA.  It’s a battle that can be won.  And THAT battle is a series of wars in every state.

What can you do?  I believe this battle can be fought on many fronts and with many, many, willing and eager participants.  If I start to list them, I will miss some and I DO NOT want to do that, but know they are out there.  They are out there advocating, spreading the word, and creating resources for others to use.  The question remains and will always remain, what will YOU do about it?

Now to be clear, if your plate is full and you have the initiatives you find important in this diabetes battle have ‘filled’ your plate ; fine.  Thank you for not doing nothing.  But if you are still looking for something to do; you have many approaches from which to choose to help solve this problem.  One approach is meeting with your legislator for possible action in the form of a law regarding this issue.  There will be some more tools about this upcoming and there are many out there already.   It’s a powerful means to try to make sure that no one else passes away from undiagnosed T1D ever again.  It will take time, like it took us time in North Carolina.  And it may only be a step, but any step is a good step to build upon.

Another approach is now.  Right Now.  There are many means to download posters and spread the word in any community.  Others have shared theirs (if you have any, please share as a reply to this post on this page so all have the information from which to choose) and I have discussed many times what is available at www.getdiabetesright.org that Kim May (a dMom) and I have made available.  But there can never be too many reminders

I have also shared a REALLY POWERFUL note that can be sent home from school nurses created by the National Association of School Nurses.  This has been sent out to 33,000 people in their data base……but we can help.   I wrote about it and you can read about it and download it here.    Enlist school groups for community service.  Boy Scouts, Girl Scouts, After-School service groups, Chamber of Commerce—-create an army to distribute the letters and/or posters which can be hung anywhere; and you can do it with little money (cost of poster to be copied), or have someone with a printer donate a hundred for you to distribute.

People are discussing many things on a larger scale from PSA’s to other initiatives; these are all good—-in fact they are better than good, they are GREAT.  Many will take some time.  But one person, can do something or start something now.

Tyson Irby recently lost his battle by not being diagnosed.   I have been in touch with Tyson’s Family and this was shared with me last night;
We heard a story today of a mother, who heard Tyson’s story,  that took her daughter in because she was going to the bathroom more than normal. Her sugar level was 600, and she is type one. Maybe Tyson’s story saved her life.

Maybe?  I think not…..I think absolutely.   Reegan’s family has shared the same stories. So has Kycie’s Family.  The word WILL IMPACT.  This is a one-story initiative.  One tells two, tells four, tells eight, and on and on and on.  While the BIG STUFF is all being worked on, let’s learn from Tyson’s Family , Reegan’s Family and others——GET THE WORD OUT THERE however it takes.  While the BIG STUFF is being worded on, the poster seen, the letter from the nurses office received CAN AND WILL change a life.

Much has been done, much will be done, BUT MUCH CAN BE DONE NOW.  Have you ever heard those commercials that end with a line that states something like, “…..someone’s life may depend on it” ?  In this initiative, that statement is absolutely true.

Please, for the new year, just “Don’t do Nothing, someone’s life may depend on it.”

I am a diabetes dad.

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

 

Bye-Bye Bayer

BayerHaving two kids living with diabetes means I’m…..well the father of two children living with diabetes.  As such, all sorts of things come to our house, mostly via the US Mail.

We received a notice the other day that stated;
Bayer AG (“Bayer”) is pleased to announce that it intends to sell its diabetes care business to Panasonic Healthcare Holdings Co., Ltd. (Panasonic). a company which is backed by funds……blah…..blah…..blah….blah.
Panasonic will operate the Diabetes Care Business under the new name of Ascensia Diabetes Care……
There is also a highlighted blue box that states our information will be given over to Ascensia……and also information where to find press releases and further information….blah….blah……blah.

The sale of the company was for 1.13 billion dollars according to a June Wall Street Journal report.

June—–either I am late to the party or this got by me somehow, but I just received the letter this week (and I know others have written about this already).  Is this a good thing.  Does Bayer still care about us?  Will Panasonic?  Does anyone?  They are “pleased to announce……”…….are we?

I’m not a big fan of change, I also understand that Budweiser no longer owns Budweiser; meaning that I get that in the corporate world mergers and acquisitions are as natural as the sun rising and the sun setting.  But I also know that when we entered the diabetes world, our lives became unglued.  One would have thought that there was some consistency with the corporate world surrounding the so many who need care; medical care…….right?

But when so many things get tilted, changed and thrown around……whether Asante Snap closes their doors, certain insulins will no longer be made, or even Bayer will cease being……well Bayer…….does anyone else ask……where are we in the mix?  We being the people who either have or have loved ones with this disease…….where are we?

We are set adrift to find what we need to find to stay alive…….and we will.  I bet if we wanted something from a company…..and we all got together and said we will buy your product no more unless you listen……..they would take notice……….or not; they could easily just sell off that division so they did not have to hear anymore can’t they?

I think we should be, and need to be, more of a partner in this diabetes battle with diabetes companies and not merely ‘users of products’……..yes?

I am a diabetes dad.

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