Your Child WILL GET SICK……It IS NOT Always Diabetes-Related!

sick-childI have written countless times on the missed diagnosis of T1D and will continue to do so.  I have warned that when someone is not used to diabetes, when it occurs, they may not know the signs including flu/virus-like symptoms.  But there is something very important that you, having a child with diabetes, should know as well.

In as much as diabetes plays such a role in your everyday life, know that the illness that your child may be feeling, may not be diabetes related at all.  Not everything is.  If your child is reaching adolescence know that their bodies will go through enormous changes.  The pains, the growing spurts, are all in the mix in this part of their lives.   If they have stomach pains, it very well may be the flu as well as keytones.

Until you could put a name or a label or most importantly; a diagnosis—-RULE NOTHING OUT.  Ear aches are not necessarily diabetes related nor is the tingling in their legs.  Headaches very well could be diabetes related as that blurry vision your child is complaining about.  It all may be temporary as well.

I don’t know how this happens but I can tell you from experience that Jill became an expert on knowing what was diabetes related and what was not.  She knew every breath that Kaitlyn took and also what Rob was going through when he was diagnosed as well.  She knew…..until she was wrong.

My point is that in my own biased manner, Jill was the best at knowing; more than anyone I have ever known.  But she was wrong at times also, so give yourself a break.  The self-blame game accomplishes nothing.  Be alert at all times and if you are fairly new in this diabetes world, trust me you will come to know quite a bit more than you do today.  Each time you will know more and more.

……….and at times you will be wrong as well…..and the sun will rise and set……onward.

I am a DiabetesDad.

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I have a Diabetes Superbowl……..in Fact, I Have Many…..You?

SuperbowlThis weekend marks a ritual that is almost absurd in its definition of hype……the Superbowl……or since it is a trademarked name, should I say, ‘THE BIG GAME’.  Why on every commercial across this great land leading up to it, buying TVs, beer, chips, yada, yada, yada, you hear the announcer say…..”for the big game’ and not ‘for the Superbowl”.  Because in most cases, they are not allowed to use the phrase Superbowl, as it is owned by the NFL.  Today’s little tidbits with Tommy.

I love the Superbowl…..er…..the big game, I mean.  I love everything about it.  Huge sports fan.  Being a NY Jets fan, you get the wonderful opportunity to have just enough energy vested in the game to make it interesting but not enough to get your heart broken.  The price we pay because we have not been there since 1969.  Some have never been there.  So we get to enjoy the game on an entirely different level.  No matter the outcome, even if we have a favorite, just give us a GREAT game.

And of course…….the commercials.

The best part about Superbowl Sunday is the gathering of friends.  Having people over to enjoy the spectacle together.  People with the same interest.  Having a great time.  So much so that many municipalities across this country will see a drastic drop in water pressure come half time when the bathroom gets full use (go ahead, play with that one in your mind for a minute).

I, actually, also have my Superbowl in the diabetes world.  In actuality, I have many.  It is whenever I am among a group of people who are on the same page as me when it comes to diabetes.  That page, is trying to make a difference.  For the most part, don’t you just love being among people who have a common goal.  Maybe it’s a conference, a ride, a walk, a camp, an event, and even a black tie gala.  Diabetes Superbowl.  I get the same excitement.  Don’t you?

It does not have to be a big-ticket item….just being around a group of people who are trying to make a difference by gaining knowledge or supporting a cause regarding diabetes.  Excitement, fun, and a whole lot of great people in the same place at the same time.

Children with Diabetes Friends for Life in Orlando, each year, just thrills me to no end.  I have been volunteering with them for some time.  To see babies and all ages above, all in one place, to make their diabetes world better…..wow….even a Thursday Night Banquet each year as well.  The link above has been set up to take you directly to that page.  That’s just one of many Superbowls in my year.  Get there if you can.

Believe me. with two kids battling this disease…..I do not take lightly of what is being dealt with every day.  But I choose to find time to laugh,  I choose to find time to enjoy.  I choose to find the time to recharge and I choose to do it as often as I can because life is here on earth, but once,   I refuse to allow diabetes to rob us of anything I possibly can and surely diabetes tries very hard to ruin anything in our path….doesn’t it.  I will fight that as long as I have breath in me, and you should too.

This is an incredible weekend for me as I am on the west coast of Florida today with an incredible group trying to plan something fairly big for the Naples area for November, on to being a keynote speaker in Orlando tomorrow at the Florida Association of School Nurses, I shoot back to Miami Saturday night for the DRI’s Love and Hope Ball—all-in-all a Superbowl weekend of wonderful people in our diabetes world.

What is your diabetes Superbowl?  What do you LOVE to do?  Even if it is not about diabetes, what is your idea of a Superbowl……er….I mean…..The Big Game.

I am a DiabetesDad.

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

 

American Girl…..and a REALLY RIDICULOUS Story…..Don’t Get Sucked In!

newspaperAny time there is a tragedy in the world, it seems the media splatters the front page and the television screen with everything and anything about the person accused of the crime.  Is it so uncommon to hear an Anchor throw a story to a reporter n the field; “Let’s take it to Joey Jones who is speaking to Susie Que who was the first girlfriend to XYZ in his hometown 37 years ago to see if we can gain some insight in why this tragedy happened…..”

Seriously….you’ve seen it, right?

I, honestly do not care about XYZ.  I get it, the publishers and producers think these facts of a murderer will draw in the audience.  I flip the channel.  I have said this before, when a story like this breaks, tell us the name of the person who did it, and I really do not want to see their name again until their sentence is passed.  But that doesn’t happen.  The more attention given, the more likely someone else will want to be glorified.  In so many varying degrees, this ‘type’ of thing happens all the time.  Giving attention is sometimes the purpose of any story.

Now this story is a far, far, cry from a story of a murderer but as an example of everyday ways to grab your precious attention there is the story of when American Girl  (link takes you to their ‘pump’ page) announced  that they were going to provide a package of diabetes supplies so their dolls ‘could have’ diabetes like many of her owners.  A nice touch.  So successful, it’s now on back order until May 13, 2016 according to their website….good for them.  The consumer reviews are sterling on their webpage.  Great that a major company is now doing what www.pumpwearinc.com (this link takes you directly to the toys page) has been doing for years and they even have them for stuffed animals.   Julie (a dMom and co-founder of the company) donates proceeds to diabetes research. (Fair disclosure, they donate to the DRI and I’m an employee at the DRIF as most of you know). All-in-all very good stuff out there REALLY COOL STUFF.

Recently a ‘publication’ wrote about American Girl and their entre into the diabetes ‘toys’ market; and that reporter could not get the story any more wrong if they tried.  NOT A CLUE on what our kids know.  I’m not going to share the link because it’s so bad, I have to believe that the focus was just to get people to read it.   I reached out to them for a comment, but heard nothing.  It is floating around out there but I’m not driving anyone to it because it’s just not deserving of any time given.

I have stated this before, I have learned that yelling and screaming about such things does little and only perpetuates what they want, attention.  I have yelled and screamed about issues in the past…..like, REALLY made a big stink……to what end?  Nothing really changed.  Now if you want to rally against this story, feel free.  And I mean that sincerely, far be it to tell anyone not to do as their heart leads them.  Don’t get me wrong, I was truly pissed when I read the story but then I thought, “This is just a trap.  They do not deserve it, and they are not worth it.”

I think the real story here is what a great thing it is that American Girl is doing, and what PumpWear is doing (and I am sure others are doing it as well……..feel free to add your company’s link to this story at the end of the post)—–it’s not about some dim light bulb story on what some reporter decided was a ‘good angle’.  To get my blood pressure up to, maybe, see an “oops, I’m sorry”, just does not cut it in my book.  The story is so out there, as I stated, and so preposterous that I question the reason except to gain readership.

Honestly, they aren’t worth the energy.  Ignore it and it will go away.  If you want to use some energy, hang some posters around town about the warning signs of diabetes.   THAT just might save a life.  How do YOU REALLY want to spend your energy?

I am a DiabetesDad.

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A Mom Loses a Son…….”23″ a Number that Means Much On This Day.

Jesse was here  MichelleSix years ago today was a normal day for just about everyone else in this world, with the exception of Jesse’s family.  Jesse passed away six years ago today.  If you ride in rides and/or if you are active in the diabetes community, chances are you know that there is a meaning behind “2/3” or shortened to just “23”.  The 23rd mile, in memory; stop at 23, 23 has become a number to make us all reflect.  To remember……and move on knowing we can foster change.  February 3rd has come to mean something in our world….but none of us wanted it, least of all Jesse’s mom, Michelle.

Michelle will find a corner at some point today and reflect in a way she needs to, what Michelle will NOT be doing today, is sitting home by herself.  When she lost her precious Jesse on that fateful day Michelle made a decision, she would make sure he would be remembered in all of the efforts in which she would continue.  She does that……for my kids, for yours, and for you; if you live with this disease every day.

Continue indeed.

Michelle is a friend.   In her shoes, I’m not so sure I could do what she does.  She has always been involved in the diabetes world but after Jesse passed, she became a powerhouse.  Almost as if a higher power reached into her life and said others need to know about what is important……if not a higher power, an angel perhaps……..indeed.

Whether it’s Riding on Insulin, educating through lectures, meeting elected representatives, riding to raise money for a cure, supporting those who have gone through what she went through—–Michelle is tireless in her efforts.  She has not stopped in her drive to make sure what happened to Jesse, does not happen to others.  She is ‘out there’ doing, when most others would close off their life……and no one would blame them.

So on this day I remember Jesse.  But when I sleep tonight and I say my prayers I will also thank God for my dear friend Michelle.    She is a lightening rod, she is a powerhouse, she is driven, and above all else……..she is a mom.  A mom suffering the greatest of heartbreak and yet gives of her self unceasingly…..for others.  Because that is what moms do.

I am a DiabetesDad.

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

Not Everyone WILL EVER Care……Reality!!

careIt was an absolutely horrendous night.  I need to share this so people know what my life is like………………………………………
Do people REALLY need to know what my life is like?  I get that there is misunderstanding.  I get that people could know a whole lot more; and would make my life easier.  But do I care about their life so much that I want to read about something I do not understand.

Our lives are so crucially important………………………….to us.  My mother once told me “What is important to you is not as important as you think to others”.  I never forgot that phrase and reminded myself many times.   With some exceptions, I don’t write thinking that someone, who has no idea about diabetes reading about my life, will all of a sudden have an epiphany.  My articles are more to encourage those already on the journey.

Our lives are truly important…….to us.  If you know someone with MS, Lupus, Cancer, Autism, mental health disease, heart disease……..and/or in any other disease-state, how much interest outside of our own personal involvement do we actually have……or even need to have; or perhaps (be honest) even WANT to have…….really?

It’s not that we do not care, we do.  But are we fully aware of the person going through chemo spending hours of sickness; or a person with MS having to have each and everything done for them because they cannot do it themselves; or a person in intensive care losing a recent battle with depression……do WE ACTUALLY know?

To be clear, there are those that probably should make an effort to know more than they do.  That’s a point well taken.  That said, be very careful on where you hold expectations regarding your own situation.   Something else I learned at an early age; it’s better to be surprised than disappointed.  Expect little, you will be surprised more times, than you will be disappointed.

I am a DiabetesDad.

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Painting Parties…..Things Seen SO Differently……Not Unlike Diabetes.

Painting partyIt’s been ‘all-the-rage’ for some time now.  A group of people get together in a social atmosphere (translation: wine is served) and look at a painting of some kind and try to duplicate what they are observing.  Mind you that all participants are looking at the exact same art work when they proceed to reproduce it……..as theirs.

We had one at our house recently.  Not sure who thought of this social event or where it started but it’s a grand slam and it’s becoming increasingly popular.  Now as I saw the finished products, of which just a few of the many are shown here, I could not help think how hard it was for me to believe that people were looking at the exact same painting.

But the art instructor was quick to point out that art is subjective.  It’s what the artist sees which means there is really no ‘right answer’.  I find a direct parallel to these art works and the different things people believe in our diabetes world.

Whether it’s a way to manage diabetes, an organization believed in, a form of research, or how one faces diabetes on a daily basis……..each and every person does it differently.

But is diabetes subjective, like art?

That’s the question I kept asking myself.  In as much as I can truly appreciate when someone paints something and has a point of view; It does not change the fact that what is painted does not necessarily come anywhere near the original.

To me if the art work being looked at is to inspire one to paint, then there is not right or wrong answer.  But IF one’s goals were to duplicate it, and it looks nothing like the original, then the objective was probably not met.  I’m pretty sure in the context of these evenings few are out to fully duplicate the painting exactly and I AM NOT here to say that people are getting it wrong.

What I’m saying is that in as much as one may like and be comfortable in the way they are dealing with something, if it’s supposed to be done a certain way based upon scientific fact (know this key phrase) and it’s not; it’s wrong.   No matter how comfortable one feels about.  Recently I met a person who has T1D and he was telling me that he checks his blood sugar once a day, he needs to do it no more.  Now as much as he may be comfortable in doing that (as my friend Jeff Hitchcock says, ‘show me the science that proves that.’) it’s NOT the way to handle T1D…..science just says otherwise.

In art work it does not matter if 10 people are looking at a painting and some show two clouds and some make it a completely cloudy day.  But there are things in this diabetes world that no matter how many times one does it, it will never make sense to be done otherwise, based upon years of data.  One cannot just go through life with this disease on a wing and prayer.  You can not just do something any way you choose and think it will ‘JUST’ be all right, just because you say so.

I’m sorry but it just doesn’t work that way.

I say this not as a judgment.  At the end of the day you make the choices.  But the plain and simple truth is that one with T1D cannot go for too long without taking insulin.  Now as silly as that even sounds there are other things that people do that have absolutely no scientific data to back up how they handle it………..but the process is thought to be okay to do for THE ONLY reason that one thinks it’s okay.

You can get away with running through a red light a million times……..but at some point disaster is going to hit.  Taking a chance that you can copy an art work can be a fun thing to do and a great evening out; taking a chance dealing with diabetes………probably not.  Diabetes is just not always broad strokes……..think about it.

I am a DiabetesDad.

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Suck it Up. Move On Already. Ignorance…….is Stupid, Yes?

IgnoranceEven after 23 years in the ring fighting this disease, it will alarm me all of my days when I experience people who do not understand our children’s diabetes.  Not the very details of the disease but the bigger strokes, “you should know better”-type.  In discussions over the years, I have come to the conclusion that people believe….and they DO actually believe this……that when our children experience a glycemic reaction (low/high blood sugars) that they get to the point where they can just ‘will’ themselves to move forward.

Really?

Any of these sound familiar?:
(Condescending pat on the head) “You’re okay, c’mon get back out there”.
“Get tough and get back up”.
“Feeling a bit better, okay suck it up and let’s go”.  
“Oh she’ll be okay, let her get it out of her system”.
“Okay it’s been 5 minutes, you can go back to class”.
“I just don’t know why you over-react to this……”
“Really, 5 minutes is enough time JUST get going.”

People?  Amazing, right?

Ignorance, as the saying states, is NOT bliss…….Ignorance is stupid.  I was always taught that if I did not know something, I should ask those who know.  It alarms me when people who have no clue about what this disease is about venture to tell me what their version of reality is in my situation (follow that?).

And if you have a brain between your ears, you should never use the word “JUST” to me when it comes to dealing with my children’s disease.  There is nothing about diabetes that deserves the word ‘just’.  Right up there with, “It’s just diabetes”.

In as much as I have preached to stay positive, to live life to the fullest, to not stop, to not let diabetes hold you back; all of  this is said with the fullest of understanding what this disease is all about.   But when dealing with a low blood sugar and someone who has no clue turns to me and says after the cookie is eaten and the orange juice is just being finished;  “Okay, all good to go now?”

I really just wanted to punch them in the nose.  Don’t you?

I am a DiabetesDad.

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

 

Many Have Given Much; Nothing is a ‘Given’.

challengerI have always loved the concept of space travel.  I built model rockets when I was kid and even did my count-down with my Estee Rockets.  Once I even made it a ‘manned spacecraft’ and placed a spider in the nose of the model and watched with nervous anticipation as it climbed toward the clouds,  I felt the sense of sheer joy and accomplishment when it ‘parachuted back’ and I let the spider go—-back into the grass. Space travel and TV, I watched it all.

Thirty years ago I was living a dream through the eyes of Sharon Christa McAuliffe.  She was a ‘regular person’; a school teacher everyone called ‘Christa’ from New Hampshire, who was being launched into space with six other astronauts in the Space Shuttle Challenger.  She was chosen from a pool of 11,000 applicants to become the first civilian in space.

On January 28, 1986, with eager anticipation, I watched as the Challenger countdown began to launch this ship, which was less than three years old, into its tenth mission of space.  It cleared the launching pad and was on its way; but 73 seconds into flight, it exploded into thousands of pieces.  The entire crew was lost including a very special school teacher.

My mouth just dropped open as I stared at the television in Hempstead Town Hall, where I was working at the time.  Stunned.  Numb.  Thirty years ago today.

My love for space travel taught me a great deal.  The unknown always fascinated me.  This love for space taught me much about the unknown.  I never thought back then that I would need this same ‘love’ of the unknown when I became a father and two of my three children ended up diagnosed with type 1 diabetes.  There is no definitive when it comes to exploring the unknown.  A huge success today can be a set back by failure tomorrow.

I. Understand. Research.

Years later as I became very interested in research for a cure, my space fascination would help greatly.  I follow progression from concept as much as I do human clinical trials.  I watch as heroes who give themselves over for research projects.  I watched in horror as my daughter enlisted in a project and it ‘went south’ as the project began.  The pediatrician stepped-in to stop the process but through blood and tears everywhere, my daughter’s voice to continue the process won out for the project to continue.  It did.  Unless you were there, you cannot understand the pain I felt as a parent.  Her voice of, “I’m not stopping, it’s too important”, will ring in my ears forever.

You see, the hype you may see in newspapers regarding any diabetes science is not always what is actually happening.  There is no guarantee when a spaceship takes off, and there is no guarantee when someone enlists in a research project.  No device ever went from paper to market,  no science regarding a cure will go from concept to completion, without the involvement of those we love living with diabetes playing a role.

At some point, they say; ‘Take me, I have diabetes….learn from me.’  Anything you read about the past, and will read about the future, will somehow involve those who allow themselves, for the benefit of science, to be used and studied.

Devices, cures, and even those who are not involved but have died and their family said, “study what happened here, so others don’t go through what we are going through…”….well in my mind……they are all heroes.  Heroes.   Remember that.  Remember that things do not just happen….someone stepped up so you, your child, and others might have a better life in this diabetes world.

I have known families who have lost children and took that experience to allow others to learn.  Surely of late, we have learned that lesson from Little Reegan’s mom.  They more, than any others, accomplished the same as what President Reagan stated of those Astronauts thirty years ago today; “…….. We will never forget them, nor the last time we saw them, this morning, as they prepared for their journey and waved goodbye and “slipped the surly bonds of earth” to “touch the face of God.”

No research ‘just happens’…….remember that always.

I am a DiabetesDad.

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’.