Parents: Look at it From Your Child’s Point of View

Me: How often does that happen?
Teenager: 2-3 times a day.

Now I will be the first one to admit that we did not have the luxury of a CGM sending  our child’s glucose numbers to our phone nonstop when Kaitlyn was diagnosed year’s ago.  What happened in the discussion I was presently engaged was that the young lady’s phone buzzed and it was her mother asking her what she was doing about her perceived low, her dad called 30 seconds later.  Both parents called and I was informed it occurs 2-3  times daily, minimum.

Really?

How low are you?
I’m not really…….70.
Did you all ever set some sort of  plan about this?
No, once I go below 80 my phone starts to ring.

Uhhhhhhmmmm……..no, I said to myself.

Unless, at some point, you want to deal  with an explosion and have an absolute revolt on your hands as the pressure cooker inside your child’s head continues to heat up every time you call them, you might want to reconsider a few things.

I get it.  Concern.  Worry.  Fear.  But how would you feel if you were contacted constantly as big brother watching becomes mom and dad asking (or texting), ‘what’s your number, what are you doing about it?’  You would not like it and I can most assuredly let you know, your kids don’t like it one bit.   One mom told me once that her child found it reassuring that she could monitor her and call her constantly.  That scenario just does not add up in my head and ring true to me.

When it comes to these type scenarios, my dear late friend Dr. Richard Rubin’s voice is heard loud and clear.
Choices……boundaries.
With today’s incredible management tools, a conversation needs to occur between you and your child. Discuss that you are their back-up.  Discuss the parameters when you will call (not so sure 70 is the number to discuss as in the scenario mentioned above) them to check that they are okay.  Use this modern technology to enlist a system where one parent calls, one parent contacts the other parent when they know all is back to normal.   Having the nurse, one parent, another parent all serving as drones and hovering over a child is too much.

Trust me.

When my oldest child (without diabetes) received his license, I made it very clear.  Here is how this works; if you tell me you will be home at 11 and your are not, I begin to  think something horrendous happened to you. I can’t help it, I’m a parent.  The freedom of a car is all yours but help me and call me and tell me when you’ll be late.  Do that and I’ll be fine.  Should you not call and you come in late, there will be a discussion.  But he now knew the parameters, the boundaries were set.  And it worked.

It’s no different with your child and diabetes.  If they want the independence to deal with this disease on their own, you WANT to help…..but all must work together.  I do not want to tell you what those boundaries are, you all set them.  It will not be perfect, there will be some adjustments; but if you’re following every move your child is making and you let them know you know every step they are making—–how do they learn?  A recipe for that revolt already mentioned.

They will get older, they will go to college, they will move away.  They will have to figure this all out on their own.  Going from being a constant drone to doing nothing is no good either.  Yet, I constantly hear from parents who tell me that once their kids left for school it was so hard to communicate with them.   That’s the key.   If you are “all over them now” you are not communicating; you are dictating.    THAT’s not healthy for you or them.

When it comes to all of these great management tools, communicate, set parameters, and balance are also tools to add into their diabetes management toolbox.  It’s their disease, help THEM own it.   Trust me, you will all be better in the long run.

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

When it Hurt Too Much to Write

Hi there.
It has been a while since I wrote, but I’m still here.
One of the happiest times in my life was discussing my articles with my mom.
She was my sharpest critic but make no mistake, she was quite proud of the forum I now have.
My mom loved to write….she always did.
When I started this column she took great pride in the work and she loved that people were responding; there was a reaction.  Mom like that people commented.  That I made some friends and that I pissed some people off.  She said writers should not be friends with everyone.  “Never forget that”, she would remind me.

And all of a sudden………she was gone.  May 19th.  The Friday before the Preakness, she was picking the horses she would instruct my brother to place her wages.  And she would go to bed never to awake again.

Shortly after she died I rattled off a few columns.

I was proud of myself for writing some well received columns.  I can do this, even though mom is gone, I can do this.  I kept telling myself.

Uhm……..nope.   Almost instantaneously, the desire to write was gone.  No matter how many times I sat at the keyboard….all I could do was stare.  A few times, tears rolled down my cheeks.

Many times writers write not even knowing if anyone is even reading…..not too unlike a radio DJ talking into a microphone not knowing if there are ten thousand listeners, or not even one.  Nothing came to me.

My mom was the most incredible person and when she would like something I wrote, she would say, “That was really just from you.  It was your heart talking.”

So I sat down at the keyboard tonight……..and I wrote.

It’s just me, a DiabetesDad……..and his heart talking.  We’ll see where it goes.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

Our Changing Diabetes World…….We are no Longer in Kansas.

As I walked through the Scientific Sessions of the American Diabetes Association’s 78th meetings and exhibit hall I can only think that when we started this journey in 1992, never did I think we would be where we are today.  Both ideal management tools and research science looking to cure this disease seems to be at an all time high.  Twenty different posters/discussion talking about immunology and transplantation (cure searches); more new products than I have ever witnessed (treatment), and so many NOW interested into the psyche of diabetes.

We truly are no longer in Kansas.

Years ago there were huge players in this space and most of them were selling, improving, and touting the latest and greatest in the world of blood glucose meters. You could not walk five feet without a sales rep meeting you in the aisle and inviting you into their booth to ‘show off’.  This weekend, I had to actually look for these companies.  No doubt about it, the Continuous Glucose Monitor (CGM) is here; and will in the not-too-distant future be the norm for checking one’s blood sugar.

One comes out with a non-calibrating CGM, another follows. One comes out with ‘a better’, smarter insulin, another follows.  And underneath it all, so many are speaking with the knowledge that Amazon and Google are definitely at the trade show and absolutely in stealth mode.  Once they come onto the market, the diabetes market will be changed, once again, forever because they will come with whatever they come with done and ready to go.  Both of these companies have the money in their R&D that they do not need to sell anyone on anything “in the works”, they will come with a full-blown market sweep once they enter the diabetes world……whatever that may look like, no one knows.  But many say it’s coming.

This is all good for those of who us are parents, or more importantly those who have diabetes, and will see the results of this market crunch to be the best, the first, and/or the elimination of competitors in a product world that has become so hugely and technologically advanced,
Some tidbits:
>The new implantable glucose sensing machine is indeed an implantable chip that is easily inserted under the skin, but one must still wear a transmitter attached with removable tape, placed over the ‘under-skin’ planted device-to send the data…..so it is not as if you are eliminating wearing a device.  But to be fair and clear, the transmitter comes off and goes on very easily: it’s called Eversense, made by a company called Senseonics.
>Much concern on the psyche of diabetes in kids over the contact and connection of parents to their kids with various electronic devices.  Parents need to set boundaries because the kids will rebel (and are) because of the constant monitoring of a child’s every move.  This is a growing concern.
>Apps.  Oh my.  The world of diabetes Apps is growing and growing and every one of them swears that the patient will be better in control and their A1C will be reduced merely by using the APP being hawked.  One exception to the mass race of the app world  is BlueLoop.  Actually created by a mom of a child with T1D, it surely will be useful for parents and schools.  That said, as useful as it can be and is to personal use, it is, and should become, an ABSOLUTE “MUST HAVE’ of every camp in the country. It most assuredly will lessen a huge paper workload and time-consuming aspect of diabetes camping, and at the same time allow medical professionals to be called upon if/as needed.  If you have anything to do with a camp whatsoever, run….do not walk…..to their site and arrange a call or a meeting.  BlueLoop is a game changer.

So there will be more in the weeks to come, including a sit down interview with Dexcom’s President and CEO, Kevin Sayer,  But for now, realize that the discovery of insulin is less than a hundred years ago.  The ADA has done an incredible job of bringing the entire world to one place in Orlando this week.  I know all of these better management tools and the all elusive biological cure is not coming fast enough for any of us; but not being in Kansas and landing in a tornado of diabetes, I can tell you that I have seen a bit of OZ and the Emerald City is indeed getting closer in better management and biological cure efforts.  We all just need to continue with the courage, brains, and heart to cross that field of poppies.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

NEWSBREAK: CMS Says Yes to the Dexcom……WOW!

Dexcom G5In case you were distracted at the end of last week, a major development took place at CMS (Center for Medicare & Medicaid Services) when the decision was made and the agency stated that the Dexcom G5 Mobile was now determined to be classified in a benefit category as therapeutic; thus allowing the agency to cover the device for those people on Medicare or Medicaid.

HUGE!

Dexcom should be applauded for their tireless efforts in this area fighting for the approval of the device.  I get it, their stock soared upon the approval and hence, it could be said it was why they battled.  Dexcom is a business.  And in the world of diabetes, businesses that are run correctly, deserve whatever they are allowed.

Kevin Sayer, President and CEO, has run his Dexcom Company with diligence, integrity, they give back to the community, and if they benefit for fighting so hard so everyone wanting their CGM, even those on social services and not on commercial insurance, can get one…..more power to them.  Not to mention those turning 65 will now no longer lose their coverage for a CGM for merely getting older.

It’s no wonder that Dexcom seems to constantly show the business world of diabetes why their business objectives and business platform are second to none.  The diabetes community can only hope others take note and follow their lead.

You can read Dexcom’s press release by clicking here.

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

Diabetes????……Do I Keep My Child Home from School?

No SchoolThis is a really tough question to address but I feel it important enough to discuss.  My goal here is not to open up Pandora’s Box but rather, to create an important dialogue.  I understand each family is different and each parent must make the call on a case-by-case basis.  Let’s respect what others do, and accept it may different from what anyone else does.

When it comes to diabetes, when do you keep your child home for school?

What can you share with us that can help others make THAT call?

I can share with you what we did, and we certainly did not know more than anyone else but perhaps it can begin the dialogue.  We always went back to our goal when Kaitlyn was diagnosed; to make sure her life was as normal as other children and to try to get her life to be as close as possible if she did not have T1D.  This was our goal.  Now of course we would never put her in harm’s way but we found her to be A. Certainly more resilient than we could ever be; and B. She would have had to be up almost all night for us to keep her home and this happened, maybe a small handful of times throughout her entire schooling.

It may be that if your child is missing 20-30 days a school year, you may want to check if that needs to be the case?  Ask around.  Bring it up in support groups.  It may be completely justified; I do not have the answer.  But we should always have a check and balance to our own actions.  We always lived by the rule; we do not know what we do not know……but we can surely find out.

You could almost imagine that I would bring in the name of my dear, great, late Richard Rubin.  Richard, who coined the phrase Diabetes Overwhelmus, always made these type decisions about being a choice.  What is the choice?  It is a good choice?  What would happen if you did A vs. B?  Ask yourself.

We were always taught that it should be a very rare occasion to keep Kaitlyn home from school.  It’s important to also remember, that they are kids.  They can learn to use something if they know it will work.  It was going to be our call if Kaitlyn stayed home from school, not hers.  She was diagnosed so young that it was an easy call when to do and not to do.  When Rob was diagnosed, it was more of a discussion because he was a teen-ager already upon diagnosis.

Look, there are times that you need to do what you need to do.  But if your child is missing two or three days every week or two; the attempt should be to change that trend.  Also make sure IT IS DIABETES when you keep your child home.  Make sure there is not something else going on.

Ask a lot of questions.  Ask if they are missing a test that day, and make sure that the test and the missed homework is made up right away.  They will learn that it is better to get it over with at the due time instead of putting it off and taking up their personal time to make up lost work, if this is a cause they try to stay out of school to avoid.

Kids spend more time at school than anywhere else outside the home.  Much can happen at school that we have no idea; and it can ‘come out’ in many different ways.  From the subject matter that can not be grasped, to being bullied for a list of reasons, to getting changed to go to gym class…….we just have no idea.  So know that a change in personality a trait, may not even have anything to do with diabetes.

Almost all parents have a similar goal in making sure our kids can take part in every aspect of life as they could if they did not have diabetes.  Figure out what is right and always ask yourself, “Do others with diabetes go through this and what do they do?”  When you ask a lot of questions, you will see many trends starting to occur.  Bring your concerns to others and to your health professionals.  When you have enough information before you; you will be able to figure out what is best for your child, and soon these type of decisions will become second-nature to you.

But ask.
We really do not know………what we do not know.

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

A MOM: I Will Never Get This RIGHT!!!!!!!

Pulling hair outI have often found myself reflecting back to the days when Kaitlyn was very, very young and we began this journey.  Do you ever reflect back?

If you are fairly new at this ‘diabetes thing’, it may seem like such a long haul ahead of you but let me share that you should look back constantly on how far you have come because you will proceed very quickly……..because you must.  I often hear parents say how much of a failure they feel at ‘doing this diabetes thing’.

No one woke up one day and said, “Okay, not only do I want to be an Olympic Runner, but I will run a race today.”  Absurd, right?

But on one day life was normal and the next, BANG….Olympic Marathon…….now GO!  You were not trained for this; you did not plan this; you could never be ready for a life after diagnosis.  And yet, here you are.

So before you beat yourself up, remember how far you have come since…..well….just yesterday.  Or since last week.  Or since last year.  At that time, the time your child was diagnosed, you KNEW NOTHING about diabetes.  And in a short time you have become an expert on so many things.

Remember this about experts, there is not a medical professional alive that does not need to do something every year to gain continuing education credits to keep their license renewed for their practice.  So every year medical professionals attend lectures, meetings, and conferences continuing their knowledge base in a field that they spent years to learn……and yet each year or two, they need to do more.

There is no continuing education credit when you have a child……it’s called being a parent.  It is a process we must work out continually.  And having a child diagnosed with diabetes…..the education never stops, nor should it.  So do not be so hard on yourself.  Remember that you are involved in something that you would never have signed up for, you had no choice and neither did your child.

Remember when you thought, I could never prick their finger to check their blood…..that could hurt them?   You have come a long way baby…….hang in there.  You know more than you think you do!  Your child is lucky to have you.

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

Every One of these Magical Dancers has T1D…….and that Was Not The Only Magic. WOW!!!!!!!

Dancing girlsEveryone of these young ladies, dancing their hearts out, have type 1 diabetes.  Dancing for Diabetes has that kind of magic that made this entire evening one of the most memorable of all my World Diabetes Days in all my 22 years on this journey……understanding the nature of it, it was a hugely memorable evening all around.  The unsung heroes are both the behind- the-scenes people who orchestrated the night; and all those who arranged the choreography–brilliantly executed and thoroughly entertaining all.

To say this was ‘just’ an evening of dance would be like saying the Super Bowl is just another football game.  From hip-hop, to modern dance, to ballet to even a trip to Starbucks to see a hugely original dance to Kristen Chenoweth’s Taylor the Latte Boy; yes, this night had it all.  Even an incredible diabetes education segment at the top of Act II…..absolutely flawless.

Dancing for DIabetes LogoFifteen years ago a young tween-ager (at the time), but no less determined,  began Dancing for Diabetes in her driveway in her Florida home.  It was the brainchild of a talented dancer, Elizabeth Stein, who was diagnosed shortly before with T1D.

Not to let diabetes stop her in any way, IN ANY WAY, she began Dancing for Diabetes to help others know that they can do anything while managing their diabetes.  Indeed.  When you see the graceful Elizabeth on home-made videos, you realize just how magnificent and dedicated she was to her craft.  When you see her at work  in a Florida Law office, you see an educated and focused office manager. When you see her speak of Dancing with Diabetes, you see a business woman with a fierce dedication to make this project work outside the boarders of her Florida State.

Dancing girls endBut it is the softness, in this same woman’s eyes, when she speaks of the young dancers who are featured in the second act, all having diabetes.  ‘I remember what it was like to dance and manage this disease.  I know what they are going through.”   And she does.  When she is on one knee speaking to one of her dancers, she walks them through as they manage their diabetes.  An outsider (me), cannot help but ask which is bigger, her knowledge of making Dancing for Diabetes the sharpest, tightest, and most professional evening of dance ever created; or her heart that cares so much for her dancers (and there were hundreds of them) especial those who dance with insulin pumps and CGMs on their waists and attached to their arms.

Awe. Inspiring. Impressed.  And quite frankly a few tears as I remember another little girl who loved dancing a lifetime ago.  On this World Diabetes Day, I was taken back to a little girl who with her diabetes, wanted to dance as well….and dance she did.  Diabetes did not stop her then, and at twenty-five it has not stopped her yet.

In my seat of hundreds of people, I was alone; as tears filled my eyes watching this evening unfold.  This one incredible evening unfold.

Dancing for Diabetes is a nonprofit organization and the Diabetes Research Institute will receive the proceeds from this year’s event.  Elizabeth has an army of friends and family who help her and this is one professionally run evening right down with signs on where to park outside the building.   As I spoke to the sponsors and special guests at the reception following, I said that Dancing with Diabetes should be, no NEEDS to be, in every State of our great country—-and beyond.   Turns out that is Elizabeth’s exact plan.

So if you have a love for dance, or your child does, and you want to learn more about Dancing for Diabetes; send me an email at tkarlya@drif.org (write Dancing in the subject line) and I will have Elizabeth get back to you.  It takes some work, but it is a fantastic evening and everyone should share in it.

Dancing for diabetes Elizabeth Head shotIt was a World Diabetes Day to remember and for Elizabeth, by evening’s end, it would be even more-so as her boy friend dropped to one knee and asked her to marry him.   She said yes.

Take THAT diabetes.

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

Diabetes Awareness Day I Created Something You Can Share to People Without Diabetes

Star. CupSo here is something you can share with those people who do not have diabetes.  A simple cup…….with a message. It just seemed to me that instead of it being a controversy, it could be used for a simple message…..a message that could save the life of someone you know and love.   It’s ‘interesting enough’ that local newspaper and media outlets may share it also….share it with them.  Share this with other sites, any sites.  Place this on all social media.  Anywhere where people who know nothing about diabetes may see it.

GDR Warning jpg

If you received this post….kindly click the flyer above and print it out.  Hang it somewhere where people will see it.  Sometimes, at the onset, type 1 diabetes can seem like a flu/or virus; but it’s not.  If someone you know has the signs above, ask your doctor to test for type 1 diabetes immediately.

So if today is about getting a message out……this just may be a way to capture those who know nothing about diabetes, the message is surely there.

Have a GREAT November 14th.

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

Tomorrow is November 14th; Nothing Tops the Reason We Started…….and Nothing Ever Will.

Kaitlyn FlowerI’m all in favor of everything that will happen tomorrow, and for that matter, all this month regarding diabetes.  Happy Birthday tomorrow, Dr. Banting and thank you for creating insulin; it–more than anything else ever discovered, created, invented, researched, and/or implemented is still the single-best finding EVER in the world of diabetes…..and everything else pales in comparison.

But we surely are glad that everything else that has come along and will continue to come along on this journey……aren’t we?

I always find myself thinking many things during this month.  My thoughts come down to one thing each and every year during this month.  Why I got involved in the first place.  And that reason is still a little girl who asked me, in crib/bed at the hospital in 1992 when she said, ‘Daddy, fix.”

No matter what has happened in this journey, it all comes down to her.  And in 2009 her brother was added to that drive.  Two of my three kids having diabetes.  It’s still my single focus and all that matters to me at the end of the day.  It’s why I try not to get caught up in ‘stuff’ that does not interest me.  What interests me is helping others and seeing that one day this disease is cured.  For Kaitlyn.  For Rob.   For others.

Cured.

Nothing short of that is acceptable in my eyes.  Many things that come along are appreciated but I’m always reminded of the headline when insulin was discovered which stated that it had been cured……..hmmmmmm?…..greatly helped……but not cured.

I have a definition of cured in my mind, and you have what that means to you as well.  We may differ how we will get there.  We may differ on who, or what, will lead the way.  We may differ on what ‘word’ we want to get out to the masses.  We may differ what symbol and/or color should be used to represent us all.  We may differ on who has written what, and how we sometimes want to hug the person, and sometimes we may even want to punch them in the nose.  We may differ on organizations.  We may differ on the emphasis of what is important.

I have said it a million times, just ‘Don’t do Nothing’.  And yet, over the years people have informed me that all they choose to do is take care of what they need to and I have learned we may differ in that thought too.

But at the end of the day;  when we crawl into bed, sign that last letter, post that last comment, give that last dollar, undo that last black-tie, tie that last sneaker, pedal that last bike we need to stop and we should look upon the face that started it all for us.  No we do not need a reminder how we got involved, we will always remember the reason.  But as the thirteenth of November turns into the fourteenth of November, look upon the face of the one who got you here.  Either as they sleep, or by looking at a picture.

And say to yourself yet again: Nothing matters as much.

For me, nothing ever did matter more……and nothing ever will.  Keep that thought and realize just how wonderful you are…….and multiply that by a hundred to realize just how wonderful and special your kids are as well.  And how much their siblings and other relatives and friends have been there to help.

And remember this……..no matter WHAT has happened to you in this journey, that face still stands as the single most reason to continue what ever it is that you do. That is Diabetes Awareness Day to me; always has been….always will be….and it happens every day.   You?

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

HEADLINE: Diabetes Caught Twerking in NYC Night Club

twerkI have always found it fascinating how Realty Show Stars and other celebrities capture the headlines.  You know that at least three names jumped into your head as soon as you read the first line of today’s article.

Interesting isn’t it?

There’s always so much discussion how little people know about diabetes.  How much more diabetes needs to be in the media.  “People just do not know about it.”  Yet celebrities and/or pseudo-celebrities CAPTURE the headlines with ridiculous feats of activity that just boggles the mind.  Perhaps we should have diabetes pull a few stunts to get into the headlines.

Ever notice how some major announcements by some of these people coincide with the opening of a movie, book, or television show……..trust me, it is NO accident.  It got me to wondering……..

“Diabetes parties all night with Kim and Justin in NYC Nightclub.”
“Diabetes……pregnant?  Seen wearing outfit with obvious baby bump.”
“Could diabetes be engaged…..seen sporting huge rock at sporting event.”
“Diabetes’ girlfriend DLo pregnant, and he could no be happier.”
“Diabetes twerks and sends text by accident to 12 million fans.”
“Diabetes in car accident….and pays off lady’s mortgage.”
“Diabetes gives outrageous interview on Tonight Show….jumps up on desk.”

See how it works?  Many people have been attributed with saying, I don’t care what the newspapers say as long as they spell my name correctly. (Mae West, PT Barnum, WC Fields and more).  So as long as it is outrageous, they will print it.

Hmmmmmmmmmmmmmm……….
Impacting millions
Costing billions
Causing heartaches
Costing Lives
Tearing apart families
None of that worthy of headlines………that what we have here?

I’m at a loss then.

Think I’ll check-in and see what Khloe is doing tonight??????????

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