The World is a Little Vile Lately…….Yes?

VileThere is a line from the Dickens’ classic, A Christmas Carol, that I have always liked. It’s enough for a man to understand his own business, and not to interfere with other people’s. Mine occupies me constantly.

Now in the context that this statement was meant, Dickens’ is clearly showing how isolated Scrooge has made himself by cutting himself off from his fellow-man.  That said, In as much as I DO feel we all need to help others, I have found some solace in that statement of late.

If you see yourself in what I am about to say, think about it.  If it’s not you, than it’s not about you.  The reason I have taken solace in that phrase is that as I roam around and read various conversations, I’m absolutely floored at the absolute contempt people have been toward one another lately.

I believe, just me-DiabetesDad, that because someone very strongly is in favor (or not) of certain results, people, movements, etc.  should not allow people to say; “I know this is wrong to say but I just have to…….” and some long tirade ripping people apart follows.

Really?

The first amendment, again–to just me, also comes with serious responsibility.  It’s a huge responsibility and it needs to be taken very seriously by everyone.  The freedoms we express should be in check when it comes to the vile and poison so many are revealing—–ALL THE WAY ACROSS THE BOARD.

This hurts me so.

And because some do it, if we continue to believe that it gives everyone the right to do it; we could be in serious trouble.  I choose to focus on my family, my passions, and things which are important to me……”mine occupies me constantly”.

Friction and friction will only result in heat.  If more time was spent focusing on how to be part of the change, WHATEVER THAT BELIEF MAY BE, instead of contemptuously screaming at each other that it’s needed; might be a better use of our energy.  And if your inclination is to immediately respond to this article by blaming some entity and/or person; don’t give them that power over you.  That’s the easy thing to do

Teddy Roosevelt once said, “Do what you can, with what you have, where you are.”
The key word here is, “DO”.  Much energy is being spent in vile shouting, from ALL SIDES of this discussion, might we all be better off with more ‘doing’.

Be the CHANGE.  No one wrote a book about someone who was GOING to do something, they write books about those who fostered change.  How you get there, is your choice.

Just don’t do nothing.
I am a DiabetesDad.
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’

Missed DX of Diabetes……Adults, Would Love to Hear from YOU!

BombSometimes, when our focus is on something specific, we tend to have tunnel-vision for that one aspect.  Not necessarily a bad thing, but I always have tried to stay open-minded to see outside the specificity of what has my focus.  And recently, as I approach the various means to get the word out about the missed diagnosis in people (mostly children) being diagnosed with type one diabetes, there is another aspect to this mission that needs to be talked about as well.  And equally as dangerous.

Dr. M. Regina Castro defines LADA in this way: Latent autoimmune diabetes in adults (LADA) is a slow progressing form of autoimmune diabetes. Like type 1 diabetes, LADA occurs because your pancreas stops producing adequate insulin, most likely from some “insult” that slowly damages the insulin-producing cells in the pancreas. But unlike type 1 diabetes, with LADA, you often won’t need insulin for several months up to years after you’ve been diagnosed.

Some have stated it falls between type 1 and type 2 diabetes calling it type 1.5.  Personally, knowing what I do about T1D, I find little difference in LADA and T1D; you end up in the same place and many will tell you that looking back when their child was diagnosed, they probably had it for some time before the lack of insulin being produce started causing symptoms.

My point is not to discuss the differences between T1 and LADA but to ask how many adults have seen a medical professional, and because they are adults, were told they have T2 Diabetes.  If it is a slower pathway from the time it starts until symptoms show (and continue) it must be an occurrence where adults see their professional at an early stage because they feel something is wrong, and they are diagnosed with T2 when it is LADA.  Which means the treatment they are given……is wrong.  That’s just as dangerous as having flu/virus, like symptoms, being seen, and being sent home.

How long before the treatment of T2 misdiagnosed, takes a toll because it is actually T1D, or LADA as the case may be?

Could not DKA be the same result?  So today I seek input from all.  Clearly more and more adults are being diagnosed with T1D.  Hence why the words juvenile diabetes are now changed to type one.  If you are an adult with T1 or LADA and you were misdiagnosed, could you please share a little bit on what happened in your life.

In our diabetes world; misdiagnosed is misdiagnosed.  Young adults or adults seeing their doctor with a blood sugar of 212 could easily be told, “Well you have type two diabetes”.  But the pancreas is shutting down and two weeks later that same person could have a blood sugar of over 500 because it’s not T2D but they keep telling themselves, “well the doctor said I had diabetes”, not knowing it isn’t T2D at all and they too have become a ticking time bomb……..THAT scares the hell out of me.

So please let us know YOUR story.

I am a DiabetesDad.

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

Get Your Child’s Life Back to Normal……..Yours Will Follow.

NormalSure, I get it; after diagnosis our lives are never normal again.  How could they be?  This is an incredibly taxing disease, on us, our family, and most of all on our child newly diagnosed.  It was in the middle of the thought process on how horrible our lives had become, and would continue; on September 26th, 1992 when I had the realization that this would just not do.

Now clearly the majority of this challenge fell squarely on Jill’s shoulders to achieve, it was something we agreed upon.  Once we decided that I would work the two jobs to try to make sure everything was not lost financially, Jill became the ‘keeper of Kaitlyn’s life’.  But together we learned, and shared.  But never to think otherwise,  and I have said it many times before, Jill did the day-to-day with Kaitlyn and she is the luckiest girl on earth to have the mom she has.

Was it too early to start this at the age of two, Kaitlyn’s age upon diagnosis?  We thought not.  Did we cry?  Yup and a lot (but she never saw).  But our energy was razor-focused on making sure we knew all we could and spent numerous hours finding out about this disease.  I have said it a million time, knowledge is power, it is the equalizer in this diabetes world.

That power would be reflected in Kaitlyn’s life.  That power would be to rely on no one’s word but our own knowledge….NOTHING was taken at face value….we found out for ourselves.  We asked a million questions,  We made a million phone calls.  We spoke to a million people.  Everything learned went into ‘the educational hopper of our mind’ and out came a course of action.

We decided that diabetes would stop Kaitlyn…..from nothing, and when Rob was diagnosed (our youngest of our three children) at age 13 in 2009, that same philosophy was now a part of life.  It took a lot of work.  It took a lot of education.  There was no daily FB chat with families going through what we went through–it did not yet exist to the extent it does now; we had to go and find it….and we did.

In today’s world my only warning is just because you see it in an instant means of our present online world….NEVER take it as gospel truth.  Great place to start but remember that because it works with one person, does not mean it will work with your child.  Your source of action is up to you.  Ask….ask….ask….run it by your professional medical team….and go ask….ask…ask again.  Decide.  The course of this journey is up to you.

To be honest with you, our worrying was out-paced by our thirst for knowledge. There is the Children with Diabetes Friends for Life Conference every year, there are camps, there are support groups……..we did not choose one……we did them all.  We did not support one organization over another, we supported as many as we could in any way.  If not financially, we volunteered our time.  Great people are involved all over and we wanted to be near as many as we could who had more knowledge than us.   It taught us that this now-no-longer-normal could be much closer to normal than we ever thought.  Right up to the time Kaitlyn came home from school and stated “I’m thinking I want to try cross-country”.  Really?

If she wanted to try something, be something, or do something; it WAS OUR JOB to make sure she could………………….whatever it took.  And we did.  Was she ‘all state’? No.  But she would not have been ‘all state’ if she didn’t have diabetes ether…..and THAT is the point.  She did what her abilities allowed.  Class officer, lettered in a sport of her choosing (just because she wanted to), Homecoming Court, Prom Court, Scholarships, this club, that club, this event, this trip, sleepover, whatever………because SHE wanted this…….she got it.  And ‘she-sure-did’; she did it all while managing her diabetes.

Add to this mix is that it was a much ‘different diabetes’ when she was first diagnosed.  Insulin pumps, CGMs, smaller syringes, pens……..nope……none of it in every day use like today

That did not make this job easy, just easier than when we started.  It still comes down to you.  What part of this disease is acceptable to you?  If it’s none of it; than do all you can to get back to where life was.  Know that it will NEVER get back exactly the way it was but if you spend more of your life TRYING to achieve that than completely being swallowed up in the grief on the lost childhood you think you now have; your child will be better off.

Kaitlyn graduated Nursing School less than a month ago, she prepares for her exam as we speak; Rob works full-time and goes to school full-time and last night he spent hours making some-sort of crazy buffalo-chicken-type-pizza from scratch.  That, my dear friends, is what I call as close to normal as it could ever be…….that is all we ever wanted.

One final word, we also were/are VERY well aware that at any given moment his disease could completely destroy a life.  The way we handled that thought was, yes, that COULD happen and it would be absolutely devastating.  But I decided that should fate EVER throw that in our path, I damn-well better be able to look myself in the mirror and know THAT I DID all I could to stop it.  If I needed to work harder—I did.  That simple.  You can listen to naysayers or you can chart YOUR course.  Never once did I say it would be easy………but I learned a long time ago……the harder you work at something, the ‘luckier’ you will be…….after that; it’s up to Whomever you believe in.  This has served us well for over 23 years, I hope it helps you just a little.  Something to be said, ‘with experience’.

I am a DiabetesDad.

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

 

The Voices of Children who have Died from a Missed Diagnosis of T1d

DKA kidsIn the box below are the voices of those who have died from the missed diagnosis of type 1 diabetes.Square
Truth is……They don’t have one………will you give them yours?
  Don’t do nothing.
Get involved….don’t know what to do??????………ask!

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’.

 

Update on One of Our T1D Kids…..One Who REALLY Gets it Right!!!

JesseThe village kids call him ‘Alto’.  The Spanish translation is tall.  But Jesse is much taller than just to play basketball.  Jesse is much taller because when many people might shy away from this type of opportunity, Jesse embraced it.

Embraced it indeed.

Being in a village called Juan Dolio is not exactly the quick pace of New York.  This village, on the southern coast of the Dominican Republic, is far away…..from……well….everything.  Where coconut palm trees grow in the sand and the water is bluer than we know.  But also where 99% of the villagers show up in clothes that are torn and without shoes; seeking medical care coming from houses with clay floors.  In 1998 Hurricane Georges destroyed the entire village.  Little was left to even rebuild to the little resort community it once was.

Jesse is part of a hand-picked group offered to come to this area to help.  It’s not mandatory and I’m sure Jesse would rather be in his apartment back in Buffalo where he attends school and will graduate in June with his RN BSN.  But Jesse is on a mission.  A mission with Missionary Score International to help others, including medical care, and that’s where Jesse comes in.  He is in that field and is very helpful to this small community where medical care is a huge luxury……..of need.

I have known Jesse for some time.   He’s not actually one of my kids, but he is one of all of our kids.  One of our kids with type 1 diabetes making a difference.  He is your regular 23 year-old and does what many young man his age like to do.  He’s not perfect; who was at age twenty-three (surely not me)?   But Jesse is also one of those young men who act beyond his years and quickly steps-up when someone needs help.  Having T1D since age 9 makes you aware pretty quickly in life that fair is a word that can surely be/work against you.  Jesse would have none of it.  Not only does he live life to the fullest, he gives back when so many more say, I’m just too busy.

So for this week he gives of his time, voluntarily, to help those who are less fortunate than he, and who live life as only he may have read about when he was younger.  People who have less and need medical care more.  And even when he is done for the day, he finds time for a basketball game with the village kids.  Where he allows the six who face him alone, to score ten quick points before he beats them 11-10.

Jesse understands fun, work, volunteerism, giving, enjoying, long hours, quick rests, laughter, and balancing diabetes; and many, including myself, are very proud of his efforts.  A tall order for some, but not for a young man the village kids……..call ‘Alto’.

I am a diabetes dad.

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’.