This is Really Cool…FRIDAY is Superhero Day…SHARE SHARE SHARE

T1DSuperhero

Anyone who knows me knows that I’m more interested in battling diabetes, and NOT battling each other.  It’s why on many occasions I’m more than happy to share something merely because……well…..it’s cool; no matter who the person, organization, and/or entity is who came up with the idea.  If it’s cool…….share it.

Today, my wonderful and talented colleagues at the DRI(F) have come up with a Superhero idea.  It has always been my contention that as wonderful as so many celebs are in the diabetes world…..they are not the only heroes.  So are the kids who live their lives to the fullest and doing it with T1D and doing it every day right in our homes, hometowns, and schools.

A #T1DSuperhero might not be able to leap tall buildings in a single bound, but those with type 1 diabetes take on heroic actions every single day to conquer the challenges of living with the disease. On Friday, April 28, join the Diabetes Research Institute Foundation in honoring all the T1D superheroes–those who live with type 1 diabetes and the families, friends, and caregivers who support them.

Help raise awareness for T1D and the need to find a cure by changing your profile picture on social media to this special #T1DSuperhero graphic.

Download the free graphic here and change your profile pic now!
Also get a sneak peek at our new public service announcement, featuring our very own T1D superheroes–our DRI scientists who are working to find a cure. You can be a #T1DSuperhero, too!  There is also a really cool superhero video on the page as well. So if you have, or have a loved one with diabetes, change your FB page for tomorrow, Friday, Superheroes Day.

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

A Loss of a Daughter—-One Man Teaches Us that a Broken Heart is NO Reason to Stop

A closeup image of a broken heart.

Stacy Joy Goodman passed away in her sleep last night.
Those were the words as they were relayed to me 23 years ago, this date, and it still shakes me to this day. The world outside of diabetes, was not too unlike it is today. Nelson Mandela became inaugurated, a President visited other countries, the NY Rangers would win the Stanley Cup, and new shows entitled ER and Friends would debut.  The world continued.  But within this local diabetes community, the world changed forever.  Stacy was 17 and had type 1 diabetes.

We were only into this ‘diabetes journey’ about a year and a half.  I was very new at an organization called JDF (now JDRF) as their first Long Island Executive Director.  The volunteer leadership involved, who hugely intimidated me with their business successes, I knew I was in way over my head.  Me, as an ‘Executive’ ANYTHING seemed silly at best.  I was 35 and this ‘fundraising for diabetes’ was so new for me. Geez Louise, I was an actor, not a fundraiser.  I had done some fundraising in my life and surely got the knack how to get things done, but THIS, with the passion and the huge amount of these wealthy individuals, was so very new to me.

Since that time, many of those very same people became my closest friends in this fight.  But in 1994, the day Stacy Joy would pass away, we would all be crushed.
There was no instant news across the world via any social media.  If something happened it either happened in your back yard or it took weeks before you would even hear of something like this.  This did not happen in our backyard—-it happened right inside our house.

This was new to me, the realization that this disease could actually take a life.  ‘Things’ that happened would happen to others, much older, not to us….our kids involved in the chapter were 17, 15, 22, and (at the time) mine had just turned 4, and having diabetes since she was diagnosed at age two.  But not for a second did I ever think this disease could actually take a child……or that it WOULD take a child.

Stacy’s mom was the Chapter Co-President.  Her dad and his wife were out-of-town. There was screaming, sadness, and tears………oh so, so, so, many tears.  A short time after the funeral I remember sitting at my desk.  It was about 8:30 pm and everyone had left the office hours earlier.  I was staring, staring straight ahead.  Tears rolled down my cheeks.  I. Was. So. Angry.  A realization came to me in a two stage thought process; it was clear to me now that this disease could take anyone it wanted.  Anyone.  The second thought process was that there had to be an equalizer in this disease.  I had to do more for my own education and to try to bring people to the table who could help end this disease forever.

Somewhere out there was Stacy’s dad.  Our roads had crossed minimally at best.  This is where all of our worlds were changing because Marc began a mission.  His daughter had a strong liking for the medical field.  Marc was determined to find the best place that was on the receiving end from the organizations out there.  Who were they funding and why?  He literally searched the globe.  The many organizations raising money to fund research were great but Marc wanted to be where the science was occurring and who was the best at it.

It was a time where one did not just ‘google’ anything—-one had to visit in person.  And Marc and his wife, Esther did just that.  Again, again, and again.  Stacy deserved that effort.  They landed at the Diabetes Research Institute at the University fo Miami.  It was rare (still is actually) for a place to be single-focused on curing type 1 diabetes.  But that was (and still is) their mission.  Their goal.

But the point of my story today is about Marc (and his wife Esther).  Over the years, whenever it seems that I’m overwhelmed, I think of them.  On this date, 23 years ago, they could have disappeared, who would have blamed them?

But they did quite the opposite.

They threw themselves completely into this battle.  A battle that would have absolutely no chance of helping their daughter.  But to provide the hope that one day to create a possibility where no one would have to undergo what they went through.  To be given a hope that some place was out there completely driven to accomplish their single goal to cure this disease.  Marc and Esther joined the (DRIF) Board and stayed with it until he was Chairman.  And when he was done in that position, he stayed with it still, going back on the board.  And still to this day he serves.

But yet it’s Marc’s eyes when he talks about the things that might have been for Stacy Joy, and when he looks you straight in the eyes and says, “We will change this.”  And he believes today as when he first started his mission shortly after Stacy’s death …….and one will believe him.  Because when one hears his story and what he has done to advance research forward and what he has done with absolute sorrow in his heart…..well that will humble one…….right down to their very knees at night when they pray.  I know this because I am one.

I was there the day Stacy Joy passed and I am here today for my kids…..and when I ever need a reminder I merely glance over at my good friend Marc Goodman, who reminds me as he continues on his journey, reminds every researcher, and reminds anyone else who is in this fight………that actions speak louder than any spoken words and Marc’s actions have shaken this very diabetes world still to this day…….and we are all better off for it.   But to thank someone who has lost so much seems futile to me; to do it to Marc, or Esther, or Jane, or Michelle, or Bob, or Jen, or anyone else who has lost their child…..seems so empty; so I honor all fo them every day the best way I am able, by staying at it with every ounce I have……..it’s the absolute least any of us can do.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

No One Wins if No One Plays……Where Are YOU?

Clock nothingI had the opportunity, recently, to be in Washington DC.  I love Washington DC and it is one of the most exciting places on earth.  So much happens there and whether you love or hate whoever is in office does not change the fact how much occurs on any given day.

While I was there I had the opportunity to make an observation.  In just a matter of days, nurses, unions, fire-personnel, medical first responders, and students were “charging the hill” to have the opportunity to express to their elected official how important their issue was.  It was an attempt to make them hear about a certain legislation that needed to be voted upon one way or another.

There were thousands of people from each group I just mentioned.  Thousands.  All going up the hill at the same time.  Now just on those four days, whoever would be on the receiving end of whatever had to be said……..received an earful.  A BIG HUGE earful.  That was just those 4 days.  Now multiply all the days in session.  That is a  lot of meetings.   That is a lot of voices.  That is a lot of people.

So what makes you so sure your voice gets heard?

You get all ‘gussied-up’ to look your best.  You have your notes.  You have your heart-breaking story.  You have your photographs.  And you have the ask you want to ask.
Well so do hundreds, if not, thousands of other groups.  Different day.  Different group. You climb the ‘hill’, you meet, you take a nice picture, you may even get a memento to take back……..but what makes your story THE story that representative will remember? How do you know?

In truth, you don’t know.

We never know.  But doing nothing will get you just that…….nothing.   If you say nothing you most assuredly will get just that so when nothing happens because you did nothing you will never be surprised…..will you?

So when nothing gets done…..now you know.  So what will you do about it?  I leave that to you but it’s my guess that if you want a better future for your child, Just Don’t DO Nothing.

Yup, I’ve said it before and I most assuredly will say it again……..because so many movements could use……………………………….you!

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

 

Stop Screaming at Yourself Over an A1C

ScreamingSomeday it will dawn on people, and I’m not sure when or how, that the blood glucose numbers one deals with are not numbers of judgment and if you allow them to be….well then you will have to deal with them.
“OMG….what a horrible number.”
“How did I let that A1C get so high…what kind of parent am I?”
“Just got a bad report, her A1C was 9.0……bot did I get an earful.”

Seriously?

Hear me and hear me loudly——there is a huge difference between a gauge and a report card.  We always and in all ways looked at A1C and other diabetes’ numbers as gauges to help us rectify whatever situation we were in.  We never got worked up about the numbers and I see no reason why that should change especially if there is such an incredible effort to do one’s best.

When an A1C number is high, figure out why it is, and adjust accordingly.  Not with a self-lashing or belittled approach by anyone else (including your Doc).  The number is 9.0 and that seems a bit high.  Why is it high?  What do we need to do to lower it?  Is there anything that can be done differently to lower it?

Nothing more……..nothing less.  A gauge.  Correct and move on.  Period.
’nuff said.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: CBS This Morning Reports on Insulin Costs, The Players, and the Lawsuit

CBS This MorningAs I wrote/reported recently on the story in Diabetes Daily, there is a lawsuit pending against the insulin companies regarding collusion on insulin pricing of late; and I also have stressed on how all parties need to react and must come together (read it here).  Today, on CBS This Morning, they report the story in more detail.

What I would like to stress about this story, is as I have also stated countless times, it is touched upon here in this report but do not just gloss over it.  At the end of the report, the reporters discuss how much finger-pointing there is going around—-THIS IS SO CRUCIAL because the finger-pointing will continue as long as ALL OF THE PLAYERS ARE NOT SITTING AT THE SAME TABLE AT THE SAME TIME to fix this problem.

It also will not matter what national health plan is in place, and do not be led off the path of what is important:  ALL PLAYERS MUST COME TOGETHER OR WE WILL BE IN A PERPETUAL, AND UNENDING, CIRCLE FOR YEARS TO COME.

THIS IS WHAT WE MUST ASK OF ALL THE PLAYERS……TO COME TOGETHER.

Here is the story on CBS This Morning.

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

A Year from Today I will Give her Away………But I Wonder One Thing……………….

kaitlyn-jobExactly one year from today I will do something and it will be the only time I will ever do it in my life.  I will walk my daughter to the front of where those closest to us will have gathered and I will shake a young man’s hand, and I will put her arm in his…..and I will take my seat, next to her mother.

And she will be married.

The one-year countdown begins today.

I probably won’t write about that often but lately, I have thought about it a lot.  If you know anything about the journey we have been on, it started when fate/life through us one nasty, nasty curveball.  At the age of 2 (2 years, 5 months and 21 days to be exact, but who was counting) she would be diagnosed with type 1 diabetes.

Our lives were shattered.

Our lives would never be the same.

Of these two statements, the first one, we decided, would be short-lived.  There was no room for ‘shattered’ in our lives.  We did not have the time, and we certainly did not have the energy, to live life as if we were a shattered pane of glass.  Shattered is just too hard to put back together again.  So we chose work over giving up or giving-in.  We chose that—-all of us; being the ‘we’.  As a family.  As one unit.  As a drive to never lay down to this disease.  We would do it together.  It would knock us….but we would move on, and move on stronger.  We would try never to stop.

And we never did.

There were so many things ahead to do in this ‘daddy’ thing.

There was silliness needed when tears came along; there was strength needed when fear came along; there were feet to stand upon when dancing was in order; there were daddy-daughter dances to go when the time was right; there were dance nights to attend when the recitals were due; there were accolades to attend when the merits were earned; there were 50 cents to give when deli pickles were bought; there were two-wheelers to do when the training wheels were off; there were Santa Claus and Easter Bunny pictures to take when the season was right; there were butterfly kisses to give and night-time prayers; there were butterfly kisses and a good night song.  There was just too much to do.

A year from today she will be walked down the aisle. We have been through a lot and we have walked together through many things her and me.  A real lot together, all of us.  And we will walk down the aisle together.  I will shake his hand and place her hand in his.  He’s a good man.  He’s a strong man.   A tear rolls down my cheek as I ask myself on this day, one year prior to her becoming his wife:  is it still okay if she always remains my little girl?
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Don’t Let Diabetes WAG You!

dog wagMany times I am asked, “What’s the best way to handle this disease?”  Now many people will tell you that there is no wrong way or right way, but I disagree.  Sometimes I turn my head and cringe when I read things because I really do not engage in FB banter……about anything.

There seems to be, sometimes, this feeling that anything goes in the world of diabetes. If it works for my child then that makes it okay.
Now…….just hold on a minute.
I’m a firm believer in doing what is right, and I’m a firm believer in doing what works for your child.  My caution is what you base your decisions upon when you choose an approach to this disease.  If you do your due diligence in finding out as much as you can about a particular aspect of this disease; how to manage it, how to handle it…….then more power to you,

But know this—-you can not ‘skate’ with this disease.  It DOES NOT CARE what you ‘THINK’ you should do, it knows what it does.  Have you ever heard the phrase ‘WAG’ with your kids and their blood glucose levels?  Excuse my french but WAG means Wild Ass Guess.  Kids will just give a WAG when you ask…….the problem is that more and more, I am seeing people’s approach to this disease as a WAG.

YOU CANNOT AFFORD TO GUESS.

YOU MUST FIND OUT.

I can share story upon story about people who REALLY knew what they were doing and ended up with not the best results.  If you are not at your best when it comes to knowledge,  you might get along for a while but your child will pay the price.   Each issue should be dealt with as soon as feasible.  If you think you need to know more……find out.  Read.  Ask questions.  Ask more questions.  Things with t1d do not ‘just get better’ they get better because you work at it.  They get better because you learn.

They get better because you act.

So, no; I’m not going to tell you what you should do with YOUR child.  But I am going to tell you that I have learned that there are many, many, many parents waiting to help you, but you have to ask.  Learn what there is to know and keep learning.   Know.  Don’t let diabetes WAG the patient.  Knowledge is the equalizer….never forget that point.

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

There Comes a Time When One Must Speak Out

UnderwearThere comes a time when one just cannot take it anymore.  The struggle to figure out which way the world is front, and which is back.  So many people stating which is the right way, which is the wrong way, and of course a whole bunch of people not talking at all.

I’m talking, of course, of the labels on our underwear.
Or as we used to say in the show, “My underwears”.

It used to be so simple.  The label went on the inside on the back.  Done.  No problem.
Not anymore.  Labels are on the side, the middle, the inside, the outside, the inside and the outside…..a fella just cannot tell anymore if they are on perfectly.  By the way, some women tell me they have it even worse……..but let one of them write about that dilemma, I have enough on my own.

I get it, it should be obvious, well it isn’t……not anymore.  The other day I put on my leopard……well….okay….they were Navy Blue….and the label was inside, outside…..just too difficult nowadays to figure out how to even get dressed in the morning.
I have better things to do with my time, thank you; like read the morning news.
Come to think of it, lately, those labels seem to be confusing many people as well.   I’ll stick with my own underwears, thank you.

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

NEWSBREAK: Law Suit Against Top 3 Insulin Manufacturers

scales-justice-statueI won’t even try to re-report this story—-go to my colleagues’ story at Diabetes Daily and read all about it:
https://www.diabetesdaily.com/blog/people-with-diabetes-are-suing-the-top-3-insulin-makers-349851/

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

 

 

OPINION: If All Do Not Sit at the Table, at the Same Time, NOTHING will Get Done.

TableI received my mortgage bill recently from my bank.  There was an error in my amount of taxes.   So I called my municipal tax assessor’s office to confirm the error and they agreed.  I called my bank and informed them, they started a report (they always ‘start’ a report) and said they would look into it.  I called back in a few days and they stated they contacted the tax assessor’s office and that they were correct from the beginning and that I would be getting a letter…..from the report.

Uhhhhhhhmmmmm……I don’t think so.

After going around in a circle a few times, I got both the bank and the municipality on the call at the same time to stop the perpetual merry-go-round and we worked it through.  I will be getting the revised bill shortly.  Now those few sentences are about 6 hours worth of wasted time and energy, but when I got everyone together, at the table at the same time, as-it-were…..results.  Unless all the stakeholders are together at the same time it’s the gerbil in the never-ending spinning wheel.

Now hear me and hear me closely.  All of the government regulations, petitions, and meetings will not do anything substantial when it comes to the cost of insulin. Little will be done in tangible results.  At some point, the natural progression of the market and competition will do something to lower the costs and people will be jumping through hoops to take the credit….if that, indeed, ever happens.

Oh sure MANY, MANY really good things will happen that will REALLY, REALLY look good…..but it’s all for show to say to the world……”look what we did.”

But watch carefully….it’s all for naught.

But until such time as the stakeholders, the retailers, the producers, the manufacturers, all sit around the table at the same time to try to resolve this mess….and throw in a few elected officials to give a government perspective on the whole picture as well………..it won’t be resolved…….ever.  Please prove me wrong.  But if we want to see something significant happen with this insulin dilemma, get everyone involved at the same time at the same table and lock the door until a resolution comes into play….is really our only chance.

So either get everyone, EVERYONE, all together or, as I said, prove me wrong……..PLEASE…….prove me wrong.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’