Cheerleading for Diabetes Awareness, with a Heart Bigger than Texas

It was exciting to learn that this year the NFL’s program My Cause, My Cleats would include the Diabetes Research Institute as Raven’s Tight End, Maxx Williams, would wear custom-made cleats recognizing the work of the DRI scientists.  This program allows NFL players to wear custom cleats in December.  In fact, many, many players take part and usually auction off the cleats to raise money for the charities they represent.  Quite a few diabetes organizations were represented in the NFL this year (Branden Jackson/ADA; Jarvis Jenkins/JDRF to name just two) and social media got into sharing so many of their stories.

As is the nature of social media, one never knows where a simple post will continue.  One story, and a video in particular, really caught on.  Interestingly enough, it was not a story about a football player, it was about a professional cheerleader.   As the
My Cause, My Cleats was being unleashed, The Dallas Cowboys Cheerleaders (DCC) were releasing an effort of their own called My Cause, My Boots.

And how social media responded. And how the diabetes community cheered the loudest.

As any football fan will tell you, ‘dem boots worn by the Cowboys Cheerleaders’ are as much known as the Dallas Star that is worn on the team’s helmet.  Run a little differently, DCC’s My Cause, My Boots is more about the cause than a particular organization and I was given the incredible opportunity to interview a member of the DCC who, as it would turn out, has a very special reason to discuss diabetes, and to take it from the sidelines to center stage.

Tess, thank you for taking the time to discuss your choice to use the DCC platform to bring awareness to type 1 diabetes.  How long have you been a DCC?
Tess: I have been a Dallas Cowboys Cheerleader for the past 3 years.

As I prepared for this interview, I learned that Tess was actually a dancer through all of her life and to me, what being a Radio City Rockette is to those who dance, a Dallas Cowboy Cheerleader is to those who have ever cheered.  It’s the icon for perfection in the industry.

Did all of the history play into your mind as you worked to become a DCC, how so?
Tess: I never actually cheered BEFORE cheering for the Dallas Cowboys.  I was on dance teams, but not cheerleading.  I danced all through college at LSU and in fact my first Dancing was at a LSU football game which was in the Dallas Stadium, coincidentally.

Yes it did play into my mind. You’re in the stadium.    But it was more exciting than it was intimidating. When I ‘did get the call’ (to be a DCC) being back in the same place it all started, and in this new and different role, was certainly a moving experience.

It’s no secret there is just so much outreach in communities all across the country with NFL Programs.  One, in particular is My Cause, My Cleats where players wear cleats adorned with their favorite charity in a special design. DCC came up with My Cause, My Boots?  Of course My Cause, My Cleats is a close relative to My Cause, My Boots…..can you share how the idea came about for the boots?
Tess: My Cause, My Boots came about, and as far as I know we are the first team which started last year with the boots.  It was just an idea.  We started by trading out one pink ‘star’ for one blue star on our vest and we had a pink star on our boot; and our directors thought it would be an incredible idea for us to choose our own causes.  And they worked with Lucchese Bootmaker, the official bootmaker for the Cheerleading Team, on what we could do with our boots for a cause close to each of us.  We had a pink star that first year and in the second year the thought was how to expand that original idea, and what else could we do with the star.  So, we gave them our cause and Lucchese Bootmaker was very creative in utilizing just that one star to not include various charities but also to be individualized to represent so many charities with so many different and unique designs.  They did all sorts of different ideas. I chose diabetes and sent them the ribbon with the blue and gray colors with the blood drop seen in so many places and that is all I did.  Their hugely creative team came back with the little red heart in the corner of the star.  Simple, direct, and powerful. So yes, we were the first team I believe to do something like this, we can only hope it spreads and more cheerleaders get involved.

Tom: When I first saw it, I actually sighed because it was very clear what it represented.  The phrase ‘Deep in the heart of Texas’ took on a whole new meaning.
Tess: Oh good, I am glad it was clear.

You did this for Troy, your boyfriend.  Could you share those series of events?
Tess: Troy and I met in December 2016 and he was diagnosed in September of the same year.  I was not there; the hardest and worst time at diagnosis…but since we met I have gone through this progression of being by his side.  I’m a big animal lover and last year I chose Animal Rescue as my charity as I have a cat I rescued.  This year, many of the team members chose to honor people they knew living with different diseases and I thought it would be a nice honor, a nice gesture, for Troy if I chose diabetes.  I thought it would be a nice surprise for Troy.  Again, I had no idea what the design would look like.  I never mentioned it, I never spoke to Troy about it.  He never knew about it until the boots were made.

Could you share a little of his reaction.
Tess: We all picked the causes in September, and did not know what the final result would be.  About a week before we received the boots, I shared with him, ‘Remember last year when I picked purple for Animal Rescue for my boots as a cause, this year I wanted you to know that I chose type 1 diabetes for you’.
It was a very special moment and we both became pretty emotional.  He was shocked, he couldn’t believe it.  They surprised us when the boot came and I rushed home and opened the box and it means a lot to me that you said you knew right away what it meant.  It was a very special moment when I saw the boots for the first time.  He was very excited, took pictures and sent them to his family.  It truly was just very special.  What I liked about it was that it was more about awareness of the disease as oppose to linking to a specific organization.  It was about honoring someone you know, someone who has the disease, and supporting THEM; and that was an incredible feeling.

So now, it’s out there.  The My Cause, My Cleats is out there and so is My Cause, My Boots.  You make your awareness video and the social media explodes.   What started as a simple gesture…..‘bam’ it goes everywhere…..what was that like?
Tess—I quickly realized, as I expected it to be, that it was going to be more than just a simple gesture.  Taking advantage of the platform I know that I have, that we all had being part of the DCC, and being able to reach more people and especially just to be a light to this whole community was overwhelming.  Last year the idea of My Cause, My Boots was new.  This year we had more media and people were expecting it.  My cause was highlighted by an accompanying video.  People were already sharing stories and reaching out to me saying they saw that I chose type 1 diabetes even before the boot, as a finished product, was being shown.  So, I knew from the get-go that this was going to be so much more than just me wearing a different color, or something different, on my boot.  I knew that it was going to reach a lot of people because this community is just so strong.  And because they lean so much on each other for support.  I have seen this before, I have seen this with Troy.  It’s a big thing to know others are out there and to also know you are not going through this alone.

I saw your video as you spoke about Troy and what he goes through with his t1d.  Being a father to two children with this disease, it was very moving.  Could you expand a little bit on what you see him go through, he’s an athlete……right?
Tess: Yes.  He plays baseball and played at LSU.  And played before he was diagnosed.  He was always an athlete and he was playing and also having type 1 diabetes before anyone caught it.  Maybe they thought he was too old so no one checked, no one is sure why, for whatever reason; he went on struggling with it without him knowing and without others knowing what it was.  He went to many doctors.  It took one really bad episode where his blood sugar topped out over 800 for everyone to realize what was going on.  He was 22 when he was diagnosed.  He quickly handled it.  He got this (his management) to where he could play.  Late diagnosis, but early enough.  And he played then, and he is playing still.

 

Tom–After him sharing all of that with you, what would you say to someone who was newly diagnosed?
Tess: I’m surely no expert at this but as I prepared to make the video, and learned what I needed and saw the video that I made had over 70,000 views, it just highlighted to me how much more I need to know and educate myself so I can figure out how to educate others.  As I learned from Troy, and I know you know Tom, I know it’s not my disease.  I can only do so much.  It’s Troy’s disease.  I can do just so much but what I can do is be there, offer words of encouragement.  I’ve seen him struggle with it but I also have seen him come out the other side and truly follow his dreams.  He keeps going.  We all see others succeed, even doing so with what burdens they have to bear having this disease.  Those stories uplift him.  He’s now one who can inspire others. He is the perfect example that you can keep going, it does not matter….you can do whatever you want.   He says, “The less you control it, the harder it is to control”.

My saying is that you must control it, or it will surely control you.
Tess—That’s a good one too, I have to share that with him.
(I laugh) Yeah but I have 26+ years at this…..he surely learned much faster than I did as a parent.  I’ve had a few more years at it for sure.

Now that you have started this, do you see yourself continuing advocating, helping, etc.?
Tess: Short answer, yes.  But I have so much more to know.  When I started this, I knew I had to become educated and I know I have to do more to understand what this disease is about.  I knew of this disease.  I knew there was a difference between type 1 and type 2.  But living beside someone who lives with it 24 hours a day is different.  I gained a new appreciation.  To know…..just……just how near death Troy must have been, was terrifying.  That’s something that was new to me.  Something that I did not know was going on.  I think that in itself is enough to bring awareness and I hope to raise resources to share that story because it’s incredibly powerful.  Maybe it can prevent someone from going through what he went through.  Maybe if they hear the story, they will see and know the symptoms whether it was a child, or an adult.  Even if someone says, “I heard something like this and do you think it might be diabetes”?  Even that would be an incredible start.   To educate.  I mean I have seen already, hearing ‘My child, my dad, my whomever…….’ is just so amazing to create a connection.  So yes, I will continue on this path and I know it’s a dream of Troy’s because he knows how important it was that people helped him.

Your video was spot on and resonated with many people.
Tess: I tried to stay focused on the person I knew and not try so hard to explain every aspect of the disease…it’s complicated and it means a lot to hear that we were close to the mark.

As I said—spot on the mark, if you ask me.
Tess:  Thank you that is good to hear.

As my readers know, I like to end my interviews by giving a word or short statement, and ask you to share the first thing that pops into your head, either one word or short phrase. Is that okay?
Tess: Sure

Diabetes?
Tess: Troy

Dance?
Tess: Love

Dallas, the City.
Tess: That wonderful skyline

Dallas, the Team?
Tess: Represented by Cowboy Hats.

Troy?
Tess: Strength

A newly diagnosed child?
Tess: Fear.

Thank you

Tess: Thank you for setting this up.  This is the reason for My Boots, My Cause and I hope this can continue and I appreciate the opportunity.

It’s very clear that this incredible couple will be heard from again, and again, and again in the future on this new journey.  A journey for diabetes awareness.  They will save lives as they continue to use their respective platforms to educate those who might not even know what diabetes is, what diabetes looks like, or even what the warning signs might be.

Saving a life, methinks, would be better than even winning a Superbowl.

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

 

2018, The Year People Died Because of PURE Greed.

There was a chill in the air as 2018 nervously tapped one leg than the other.  Every other year had to wait outside and 2018 was sure it was planned to be made to wait until the Boss came in.

The Boss came in out of breath and stood behind the desk, red-faced and staring at 2018.  Both did not speak at all for what seemed like an eternity.

Really?  Really 2018?  Each and every year I had to let your predecessors go because they did not fulfill the goal of finding a cure.  It’s a mandate of every year to take us closer…….to find a cure.  But you, 2018, you did the complete opposite.

2018 started to speak; I……I……I’m not sure……

The Boss broke in; Hush up.  I’m furious, 2018.  Livid.  Angry. Disappointed.  And I won’t even get to the subject of a cure.  Not at all 2018.  I have one word that continues to infuriate me.  One word.  (screaming now) Do you know that one word, 2018…..do you know the word?

2018 stared down at the ground and the tears uncontrolled spilled out of each eye and fell to the carpet below.

Yes, I think so.

The boss leaned forward on the desk and burned a hole into 2018 with a stare both steaming hot and frigid cold at the same time.

Insulin, 2018…..the word is Insulin!  Every year before you 2018, made an argument to be kept even though a cure was not found and quite frankly, I owed it to them to consider—-to almost allow them to continue based upon some of their INCREDIBLE advancements,  but not you 2018.   CERTAINLY NOT YOU!  How could something so crucial be kept out of the hands of those in need based solely upon cost?  REALLY 2018……it’s money?  Greed?  Pure Greed?  And it does not lay at the feet of the Insulin Companies, that is too easy an answer, and it is not an accurate one either.  There needs to be open disclosure…..the Insurance companies, the retailers, and most of all; the PBMs (Plans Benefit Managers).  Buybacks, rebates, and everything else that adds to the burden of the patient.  I’M SICK OF IT 2018! DO YOU HEAR ME?

The Boss stopped.  Just stared at 2018 who had nothing to say.   No defense.  No words, No retort. No possibilities.  Just……..nothing.

The Boss spoke almost in a whisper.  People died this year 2018 because of utter and stupid greed. People were forced to ration their insulin, and some plainly had to go without.  Shame enough for all.  Everybody pointing fingers at someone else.  “Not my fault” said by almost everyone.  And yet a son, a daughter, a mom, a dad, a relative, a person who was loved was buried, 2018, because they could not afford the one thing to keep them alive………………………………(The Boss yelled)  Insulin, 2018, INSULIN!!!!!!!!!

The silence was deafening.

The Boss with face covered and a whisper of a voice.:
Just get out 2018.  The cure wished for was actually overshadowed by people who cannot afford their insulin.  They died, 2018, they died.  Just get out, you were the biggest failure I’ve ever encountered in all my years.

There was nothing more to say.  2018 got up and walked out never even turning around or uttering another word.  As 2018 opened the door, left, and got into the elevator; the Administrative Assistant hurried into the Boss’ office.  The Boss stared out the windows behind the huge oak desk.

Should I send in 2019, Boss?

The tears rolled down both cheeks of the Boss.
Give me a minute.  (Sigh) Hopefully 2019 will have the correct priorities and we can focus back on that cure.  Someone needs to make a difference.  Insulin must become affordable for all.  Let’s hope 2019 is the one to do so.

We can hope so Boss, we can surely hope so.

The Boss sighed.  Show in 2019.

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

An Annual Tradition……Twas the Night Before D-Christmas 2018

With special apologies to Clement Moore.   I present what has become an annual tradition……an updated, ‘Twas the Night Before D-Christmas for 2018

‘Twas the night before Christmas, when all through the house,
Not a creature was stirring, not even a mouse.
The meters, CGMs, and supplies were put away with such care,
In hopes that Santa would bring the cure with him this year.

The children were nestled from head to their feeties,
While thoughts in their head were no more diabetes.
And mamma in her ‘kerchief, she prayed for the cure too,
A dad still wonders what else could he do.

Remembering this year; CGMs enough to fill a bin,
All so new and even under the skin,
Insulin is still with a cost way too high,
Government should act, stop asking why.

As costs continue to rise and wallets get thin,
We fought hard for lower costs of insulin.
The community raised voices loud and concise,
Costs are too far and need to be lower in price.

The voices were loud and the voices were clear,
We will shout as one, we all have no fear.
Insulin is not a luxury, stop causing such strife,
Insulin for all it is needed for life.

Many things were good, many things were fun,
Diabetes awareness campaigns are still being done.
The word is important for everyone to hear,
Capitol Hill is hearing our voices, we’re getting in gear.

Others will take the lead and we will all see
Better products, more work, and good advocacy.
Better pumps, insulin, and CGMS by the score,
There’s plenty coming and we’re screaming for more.

When you look outside at the fresh fallen snow,
so many are doing and so many you don’t know,
Think of those who inspire and soon you’ll see,
Things will move forward and continue to be.

The life is not the greatest fighting this disease.
Continue to ask as you drop to your knees
That things will get better and rightfully quick,
Good things to come, and not all from St. Nick.

So listen carefully as you think what needs to be done,
If you have an idea, take it and run.
Don’t leave it to others; it’ll be just a few,
“Don’t do nothing” is what you really must do.

And if you think you’re done, tired, and feeling sort of sore,
Think of your loved one with diabetes, it’ll make you do more.
And if not for you, it will be for their sake,
We won’t stop at all till they all get a break.

And then, in a twinkling, one day we’ll hear on the roof,
The prancing and pawing of each little hoof.
And the only thing needed in Santa’s bag for sure,
Is when diabetes is gone because of a cure.

So we will all continue to work, the ‘where’ is up to you,
But you have to make the decision on something you’ll do.
And one day we’ll scream and exclaim, “diabetes is gone from sight,”
The Happiest Christmas ever, and to all a good-night!

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

Remember there is a “Best” in Banting and Best

November 14th, is World Diabetes Day.  This date was chosen because it’s the birthday of Frederick Banting.  Who chose this?

I’m a huge fan of Hamilton, the Broadway Musical.  In as great as the show is, I always found it interesting that Alexander Hamilton, a man who was not even president, became as popular as he did, and stayed.  Was the biggest claim to fame the fact that he was shot, and died, in a duel?   In the show, the opening number in fact, Aaron Burr announces,…..and me? I’m the damn fool who shot him.  We are lead to believe in the musical that Aaron Burr was much more popular than Hamilton and his life’s love declares that she would spend the rest of her life making sure history remembered Alexander Hamilton.

I guess it worked.  I mean I do not see Aaron Burr’s portrait on any currency.

Which brings me back to my opening sentence.  Who decided that Frederick Banting gains all the attention when poor Charles Best, lacking the PR machine that Alexander Hamilton had, becomes not much more than a foot note in this historic discovery.

Now I’m very aware that it was Banting who spearheaded this endeavor but it just seems to me that there was much work that went into the discovery of insulin.  I mean both of their names are on the patent (there is a third name as well—a different story for another time).  Banting even shared half of his money from winning the Nobel Prize.  Good. But not good enough.

The world will never fully understand the work of Charles Best in the discovery of something that literally has saved the lives of millions of people.

Insulin.

So this February 27th, the birth date of Charles Best, I say we do something in honor of the man most forgotten in a discovery that had glory enough for all.  Perhaps pass legislation on this date that makes the very discovery created to save lives, also affordable to save lives.

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

Death from Diabetes……A Small Glimmering Light has Arrived

By far, this is the hardest thing that I have been involved both in and with; on our diabetes journey and within our diabetes community.  It is hard.  It is sad.  It is reality.  And quite truthfully it just sucks.

The number one thing that occurs when someone dies in our diabetes community, is the loss of what to do when it happens.  What can we do to help?, is asked over and over again.  What to do, what is right, how to help.  Now there is something with true substance that we can all do when someone passes away.  And unfortunately, it will happen again.  My picture today is the blue candle, but I have added a glimmering light, small as it is, because it is a light that many families will need at their most difficult time, that may now be there to help.  Somewhere to turn when so all alone.

Today is National Bereavement Day and Beyond Type 1 has ONCE AGAIN stepped up, to help our community. I believe that Beyond Type 1 (BT1) is truly one of the most remarkable organizations in existence.  What no one touches…..they hit head on.  Listening to Sarah Lucas, Thom Scher, and/or anyone at BT1 when they discuss diabetes topics, you feel their passion–it becomes tangible; their actions are a force, their actions are quick, their actions have substance.

Today, this wonderful organization has partnered with one of the people I respect most in this battle, Michelle Page Alswager.  Michelle lost her precious Jesse at age 13.  Others may just give in and give up, and truthfully, no one in the world would ever blame them.  Michelle has taken her grief and reached out to help as only someone who has experienced this pain can…….she has made it a rallying cry to help others.  She has been an advocate for years to those who lost someone and, as is their custom (missed diagnosis, Tu Diabetes etc), Beyond Type 1 has stepped in to fill a void, and if you know BT1, you also know they do nothing halfway…….this is no exception.

Jesse Was Here
From their new website page:
Launching August 30, 2018, Jesse Was Here was inspired by Michelle Page-Alswager’s experience after the sudden death of her 13-year-old son, Jesse, from Type 1 diabetes. Grieving the loss of her child, and the potential loss of the diabetes community, she created an online community to support parents who had also lost their children to Type 1 diabetes. By connecting with others who shared her experience, she realized many of those seeking support and opportunities to honor their loved ones, also struggle with unexpected funeral expenses, ongoing medical bills and sometimes even the funds for a headstone. Through her efforts, she discovered many others — not just parents of young children — were looking for peer support, practical information, coping tools and financial assistance. Working together, Michelle and the team at Beyond Type 1 are creating a very special program to serve this unique and deserving community.

Keep this as a resource because, the painful reality, it will be needed.  While you’re at it, give a few bucks to them as well because in reality, they can only help with what they have.  If you have ever asked, How can I help that family?—-now is your chance.

Truthfully, I hated writing this article today because it just reminded me of just so much pain I have seen others go through over the years.  But it is comforting to know that people like Michelle are not afraid to walk-the-walk, and organizations like
Beyond Type 1 are not afraid to listen, and step up.

It is what makes being part of the club none of us wanted to join; a little more bearable.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Diabetes Disaster Response Coalition is Activated—Hurricane Lane

The Diabetes Disaster Response Coalition was created after years and years of people wanting to do something, AND DOING SOMETHING, but without a cohesive effort so the entire diabetes community knows what to do in the time of disaster.  This is the only time I will speak in general terms about this group…..moving forward, when you see the logo, it will be an indication that there is an update as this column will be turned over for information about a particular disaster.

During times when you want to help, go to the Diabetes Disaster Response Coalition FB page for up to the minute information on how to help.  There is a great body of people involved on this Coalition co-chaired by Carol Atkinson (Insulin for Life/USA) and Kelly Mueller (American Diabetes Association) because that makes sense.  There is a lot of things making sense with this group.  At some point I will fill you in on who is involved but let’s get right to the nitty-gritty with information on what to pass along to your family and friends in Hawaii who might have diabetes concerns.

The most important information is what YOU NEED to do to be prepared to handle your (or a loved one’s) diabetes care during the upcoming storm:
CLICK THIS LINK FOR PATIENT PREPAREDNESS

1. Documentation. Write down type of diabetes you have, other medical conditions, allergies, and previous surgeries. Include current medications, doses, and time you take them along with your pharmacy name, address and phone number.

* Prescriptions. Ask for an extra supply of all medications, including insulin and Glucagon, if prescribed. During an emergency, you are eligible for an emergency override. Call your pharmacy, if they say no, contact your healthcare provider for an altered prescription. Warning: Insurance may not pay for the increased amounts.

2. Insulin. If you lose power and you have unused insulin, don’t throw it out! In an emergency, it is okay to use expired or non-refrigerated insulin. 3. Shelters. A live map of open shelters from the American Red Cross can be found here. You can also contact the American Red Cross directly at 1-800-RED-CROSS. If you find yourself in a shelter without proper diabetes care and supplies, call 1-800-DIABETES.

4. Statewide Updates. Emergency updates and other resources can be found here. Hawaii Emergency Management Agency. http://dod.hawaii.gov/hiema/

The Diabetes Disaster Response Coalition FB will be updated as needed.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

CGMs Upon Diagnosis Moving Forward? Thoughts?

I’m sure there was a time when people were dealing with their diabetes; and were used to peeing in a cup, boiling water, dropping in tablets to match a color chart, and check the color of urine to see how much insulin was needed, they were content with the procedure because it was really the only choice. You did it this way because that is the way it was.  And along came a study that showed close control of blood sugars could help enhance the life style of those with diabetes and even prolong lives.

What happened?

Well the pharmaceutical business EXPLODED with devices and treatments never seen before in our diabetes world.  What was a 30 minute process, minimum, was now being done in 30 seconds…….but there was a catch.  The individual needed to harpoon themselves 4-8 times daily to produce a drop of blood used to measure the glucose when applied to a strip attached to a meter.  That was the tradeoff.  It was better and faster but to the individual, was it ‘better’ to stab oneself in the exchange of faster and more accuracy?  That is the way it was.

You see if you have been around in this diabetes world twenty years or less, you really do not know anything else but glucometers as THE DEVICE to use.  You became used to ‘harpooning’ yourself because that was the way of the world and you were taught nothing different.

What happened?

An all-out war broke out in the pharmaceutical world to be the fastest meter, the most compact meter, and the most accurate meter.  And work began to improve upon ‘the norm’; to make it so no blood drop was even needed.   A way or a means to check one’s glucose constantly and on a device where the information was sent electronically, constantly……..like predecessor management tools, it seemed like a dream come true.   But it happened and the continuous glucose monitor (CGM) is now a part of our every day life……..for some.

“I do not want to wear something all of the time?”
“I’d rather do it the old-fashioned way with a meter.”
“Being attached does not seem right to me.”
And if you did not always use a CGM……that is your call.

But we bought up a generation of kids who knew nothing else when it came to harpooning themselves to obtain that drop of blood…..it almost seems archaic, doesn’t it?  But they surely accepted it as ‘the norm’.  It’s time to bring up a new generation of kids.  Kids who know nothing else but wearing a CGM………because it makes sense.   The glucometers are becoming less and less and more people are on a CGM than ever before.  Sure we need glucometers, but now they are mostly a back up.

It makes sense that there is something that can alarm when you are low and warn you.  It makes sense to have a management tool almost the time you are diagnosed that can help prevent those swings from low to high and back low again that leaves the person with diabetes feeling like that they are in a spiral in all sorts of directions.  It makes sense to wear something that checks one’s blood sugar constantly.   I’m sure when the choice was to pee in a cup instead of harpooning yourself, it seemed likely to stay with the old way, it was easier………but we now know it was NOT better.  Was it?

It’s time to once again challenge ourselves with something better and not necessarily easier. A CGM should be given as soon as a diagnosis occurs.  We need to ask those questions once again?  From the moment one is diagnosed.

What do you think?

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

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’.