T1D; Could Not a Cure Just be a REALLY Useful Management Tool?

Since the day I walked away from my acting career, I have spent almost my entire professional life in the “diabetes space”.  I made a promise to my two kids that I would stay at this until a cure is found.  But cure is both a relative and loaded term.

I, too, was severely ‘duped’ into being told, and worse yet–convinced, about the five years syndrome until we would arrive at the cure.

In life we are faced with choices.  I could have become enraged and left this diabetes world, or I could examine it thoroughly and understand what the future of diabetes could look like.   And continually try to make a difference.  I have been watching carefully the evolution of diabetes management tools for a long time.  We did not go from one day not having a CGM to it becoming a most crucial tool in our diabetes toolbox.  The same can be said for Insulin Pumps, Insulin and even meds.  It was not the case that one day they were not here, and the next, they were.  It was a progression.

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We Need to be Dancing for a Cure……We cannot let it Fade from Existence

I read the following statement recently: CGM technology has reached a point where it’s now the standard for glucose measurement.

Just in case you have been living in a luxury oasis somewhere, you probably know that a CGM is a Continuous Glucose Monitor.  A device worn that checks an individual’s blood glucose constantly (different timing depending on the device).

Now whether you agree with this statement or not, it’s more important to understand the statement in relation to where we are now, as oppose to a time gone by.  CGM is a new term, and new device, in the relative diabetes timeline of events.  Kaitlyn was diagnosed on September 26, 1992, about 30 years ago.  The FDA approved the use of a CGM in 1999.  Without editorial, you now have a choice of devices to be used by a few different companies.  It’s a fabulous management tool for each person’s diabetes tool box.

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Should Diabetes Ever Be Given Space in our New Year Resolutions?

Resolution?

Usually, by the end of January, any resemblance of a made resolution of early January has disappeared in my life.  I really wish I was better at keeping them.  I always found it interesting when I hear someone with T1D say that their resolution is to ‘do better’ and lower their A1C.  Let’s be clear.  Saying I want to go to the gym more or eat less pizza is a goal that is reachable and it is based on trying to break the cycle of human behavior.  Making a new year resolution on lowering one’s A1C makes me want to say……give yourself a break.

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D-Month…..over?….what?…..when?

November is over. Did you miss it? Did you do something for diabetes awareness month? Did you need a reminder that diabetes is in your household?

I get it. So many believe in the ability to celebrate a good life despite/in spite of living with diabetes. A time to let the world know, and help diabetes awareness, for an entire month. What a concept.

Not to me. November is the same as its 11 colleagues that make up a year. I celebrate, educate, advocate, and hopefully inspire (a little) 365 days a year. Telling someone who lives with diabetes that there is a month totally dedicate to diabetes awareness, the answer you will most likely hear is, “Thanks but no thanks—-I live with it 365 days a year.”

It’s nice that some roll out diabetes awareness month as is done with holiday decorations and celebrations. But in truth, we choose to celebrate our kids every day, a special month is not needed. What our kids do all year round is worthy to celebrate all year round.

It’s nice that some roll out the advocacy for diabetes causes during the month of November. But in truth, we choose to fight for the rights of those living with this disease every day we can. Insulin costs, rights, and the ability to have what everyone else has gets a full court press all year.

As I stated it earlier…..I get it……I really do. Blue, new, you, and what’s due are the voices loud and clear. Let’s just push as hard all year long. No matter how small or how large, “just don’t do nothin”—-but do it all year long.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.  Tagged diabetes daddiabetes inspirationjust don’t do nothing



Two Moms Change Our Diabetes World

It amazes me sometimes when media skips something so crucial to our diabetes world. Nothing would make me happier than when this story is read, media sources who are so much more significant that my little column here reach out to these two women for the simple reason; their story needs to be read, seen, heard, and witnessed. People need to know that when they make the decision to “just not do nothing“; they can, and do, make a difference.

Many entities and people helped get this to California Governor’s desk (Diabetes Advocate Brett Michaels being just one), but before Senate Bill 97 became part of the highest level of funding bill in California history as part of a whopping 123.9 billion dollars for grades K-12, it started as just an idea. Moms Debbie George and Michelle Thornburg knew that the world could do better at recognizing the early onset of type 1 diabetes (T1D). They knew that it was needed to have the complicated conversations with doctors, nurses, teachers, and school staff on what type 1 diabetes entails, and provide a better understanding of the disease to help ensure the safety of their children, Sierra and Dylan. In doing so, they changed the parameters of diabetes education for all children in the state of California forever…….and it is up to the rest of the world to continue the battle……..but now, there is a treasure map to the promised land of riches; breaking down the misunderstood world we all know with our children living with T1D. Two moms said, “ENOUGH, WE CAN AND WILL DO MORE!”

Years ago when Little Reegan passed away from undiagnosed diabetes, her mom and legislatures in North Carolina passed an unprecedented bill regarding diabetes education. Both moms were in touch with those responsible back then in 2015 and made it their mission to take the same framework of the Reegan’s Rule law in North Carolina, build upon it, and move it through the governing halls of California’s State Capitol. A massive undertaking over five years in the making. When one starts this process, they start out as an advocate. The process is full of twists, turns, setbacks, successes, loneliness, promises of being helped also being broken; all out weighed by one concept, to get the job done. Upon finishing the job, these same advocates are then classified as experts because basically, they did the impossible. They took an idea, a much needed concept, and they made it law. Period.

The law states (click here to read the entire diabetes portion of the bill): The department, in coordination with any other entity the department deems appropriate, shall develop type 1 diabetes informational materials for the parents and guardians of pupils. The informational materials shall be made available to each school district, county office of education, and charter school through the department’s internet website.

THIS IS NOW A LAW IN THE STATE OF CALIFORNIA

THIS IS A BIG DEAL.

For all time, every state now has a road map to do the same. What began with Little Reegan, then moved to Pennsylvania with the efforts of another mom, Debbie Healey, has now graduated to the big time with a law specifically designed for money to be allotted to those undertaking type 1 diabetes education.

My face is streaked with tears as I write this because the deaths of so many paved the roadway for this much needed legislation. Debbie and Michelle have initiated something that is next to impossible to accomplish, and in doing so even created a nonprofit to continue the work they started (EaseT1D.org). More can do the same. Bravo ladies and a huge and deep bow of gratitude from all of us wanting a better world. Somewhere out there Little Reegan is looking down and smiling knowing that she continues working through others to change the world.

God works in that way.

What will you do about it?

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

It amazes me sometimes when media skips something so crucial to our diabetes world. Nothing would make me happier than when this story is read, media sources who are so much more significant that my little column here reach out to these two women for the simple reason; their story needs to be read, seen, heard, and witnessed. People need to know that when they make the decision to “just not do nothing“; they can, and do, make a difference.

Many entities and people helped get this to California Governor’s desk (Diabetes Advocate Brett Michaels being just one), but before Senate Bill 97 became part of the highest level of funding bill in California history as part of a whopping 123.9 billion dollars for grades K-12, it started as just an idea. Moms Debbie George and Michelle Thornburg knew that the world could do better at recognizing the early onset of type 1 diabetes (T1D). They knew that it was needed to have the complicated conversations with doctors, nurses, teachers, and school staff on what type 1 diabetes entails, and provide a better understanding of the disease to help ensure the safety of their children, Sierra and Dylan. In doing so, they changed the parameters of diabetes education for all children in the state of California forever…….and it is up to the rest of the world to continue the battle……..but now, there is a treasure map to the promised land of riches; breaking down the misunderstood world we all know with our children living with T1D. Two moms said, “ENOUGH, WE CAN AND WILL DO MORE!”

Years ago when Little Reegan passed away from undiagnosed diabetes, her mom and legislatures in North Carolina passed an unprecedented bill regarding diabetes education. Both moms were in touch with those responsible back then in 2015 and made it their mission to take the same framework of the Reegan’s Rule law in North Carolina, build upon it, and move it through the governing halls of California’s State Capitol. A massive undertaking over five years in the making. When one starts this process, they start out as an advocate. The process is full of twists, turns, setbacks, successes, loneliness, promises of being helped also being broken; all out weighed by one concept, to get the job done. Upon finishing the job, these same advocates are then classified as experts because basically, they did the impossible. They took an idea, a much needed concept, and they made it law. Period.

The law states (click here to read the entire diabetes portion of the bill): The department, in coordination with any other entity the department deems appropriate, shall develop type 1 diabetes informational materials for the parents and guardians of pupils. The informational materials shall be made available to each school district, county office of education, and charter school through the department’s internet website.

THIS IS NOW A LAW IN THE STATE OF CALIFORNIA

THIS IS A BIG DEAL.

For all time, every state now has a road map to do the same. What began with Little Reegan, then moved to Pennsylvania with the efforts of another mom, Debbie Healey, has now graduated to the big time with a law specifically designed for money to be allotted to those undertaking type 1 diabetes education.

My face is streaked with tears as I write this because the deaths of so many paved the roadway for this much needed legislation. Debbie and Michelle have initiated something that is next to impossible to accomplish, and in doing so even created a nonprofit to continue the work they started (EaseT1D.org). More can do the same. Bravo ladies and a huge and deep bow of gratitude from all of us wanting a better world. Somewhere out there Little Reegan is looking down and smiling knowing that she continues working through others to change the world.

God works in that way.

What will you do about it?

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

Goodbye 2019—-Hello Modern Roaring Twenties

The quiet was very loud in the waiting room.  The employee awaited the turn to ‘face the music’.  2019 was not as nervous as when he heard the yelling when 2018 left last year, the yelling was scary as the Boss rarely yelled, but yelling occurred as 2018 was ushered out….it was left to 2019, and 2019 knew that the year was over and failure was the result.
Send in 2019, please.  The intercom on the receptionist’s desk echoed.
The Boss will see you now, she ventured a partial smile.  2019 stood and walked toward the door and opened it with conviction.  Hi Boss, it’s me.
C’mon in 2019, come in.

2019 took a chair and both The Boss, and 2019, sat for a few minutes without saying anything. 
2019, not a good year. Really not a good year.  I really want to get back to being so annoyed at you new years because no cure has yet to be found, instead I find myself just so angry at you all not getting insulin into people’s hands.  Some really good local legislation and some extremely powerful hearings,,,,,,but, we have yet to move that dial.

2019 spoke up, I feel like some progress was made, especially in a divided capitol who certainly have other thingson their minds.  I….

The Boss stopped 2019.

2019, I am not here to listen to your side of the story.  You failed in finding a cure.  You failed in resolving the insulin issue and quite frankly I’m not as angry with you as I was with 2018 for the only reason, I have become calloused to the pain you all keep coming and dishing our every year.  You did not accomplish one thing you set out to do.  The technology that other years touted as hugely successful, broke down as well.  I was encouraged, again, by the one thing that encourages me each year that comes in my office, is ushered out, and a new one ushered in. DO you know what that is 2019?

I’m pretty sure it is those impacted by diabetes.

Exactly right 2019, it is the people impacted by this disease.  The people who live with diabetes and graduate school, become professionals, do the plays in their schools, play sports, hold a job, get married, have kids, get good grades, play with friends and for all intent and purposes they live their lives to the fullest.  It is the researchers who constantly look for that needle in the haystack because they believe a cure is out there and worth looking for.  It is the genius minds that are not content with the status quo in management technology and continue to improve health care.  It is the legislatures who continue to fight to bring the insulin costs down.  It’s those who believe that diabetes will JUST NOT DUE in their lives 2019.  The keep me at this job.

2019 stood up.  I understand.  It is my truest hope that this new decade arriving at midnight is the modern ‘roaring twenties’ in all things diabetes.  Sorry I failed you boss.

And just like that 2019 left.  The Boss put his hands behind his head and smiled at the ceiling; Hmmmmmmmmm Roaring Twenties in all things diabetes, I like that.
He buzzed his receptionist; Send in 2020, the modern roaring twenties in diabetes starts now.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.