Tag: diabetes awareness. blue

Goodbye 2019—-Hello Modern Roaring Twenties

Posted on | by tomkarlya | 1 Comment on 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’.

Twas the Night Before dChristmas 2019

Posted on | by tomkarlya | 1 Comment on Twas the Night Before dChristmas 2019

With special apologies to Clement Moore.   I present what has become an annual tradition……an updated, ‘Twas the Night Before D-Christmas for 2019

‘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 up a bin,
All so new, fast, and even under the skin,
Insulin is still with a cost way too high,
Government should act, stop asking why.

Some say a crime and even a sin
Outrageous price for one dose of insulin
The community raised voices loud and concise,
Costs are too far and need to 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 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, 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, launch it, 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’

Your Child with Diabetes has a Sibling, Don’t Forget It

Posted on | by tomkarlya | 2 Comments on Your Child with Diabetes has a Sibling, Don’t Forget It

In this day and age, if you think your kids are not, somehow and some time or another, on the internet, you would probably be mistaken.  One statistic states that only 15% of parents are ‘in the know’ of their child’s access and use of the internet (https://www.guardchild.com/statistics/).  So let’s assume that stat is roughly correct, that means whatever you post, write, vent, argue, and generalize; it’s a pretty good chance your child has access.

I have stated in the past that I’m no fan of posting kids in their hospital bed but not because of the impact, I get it and there surely have been hugely powerful photos of such.  But how would we each feel if someone took a picture of us at our absolute worst and posted it with a caption, “Take a look, I surely feel bad for my mom today”.  Think about it.  But my main reason for today’s article is if you have more than one child.

Not more than one child with diabetes, just more than one child. I cannot tell you how many times I’ve seen a picture of a child with diabetes and what a hero they are with flowers, certificates, trophies, and all sorts of fun stuff celebrating their accomplishments.  To be clear, that is wonderful and knowing they accomplished these feats while battling diabetes makes us incredibly proud, and rightfully so.  But I’ve also seen these very same pictures with a smiling sibling looking on and when I scroll back through someone’s FB page, I just do not see any of the sibling and their accomplishments.

Be careful.

In as much as we are all proud of what our kids accomplish in their day-to-day battles, remember to single-out something your child without diabetes has accomplished. Post about that. Brag about that. As my dear friend Dr. Richard Rubin used to say, “make it about balance”.

I can tell you with most certainty that your children know the times; a trip was cut short, a detour had to be made, something different was served or left out, more time was paid, and in general a bigger fuss was made over the child who has diabetes.  And that is fine and at times completely unavoidable, just make sure you stop, every now and then, and spotlight those children who do not have diabetes.

Let them decide where to eat some nights, or what movie to see, or what activity to do.  Our children without diabetes know every corner that was cut on them because of their sibling with diabetes.  What do you do to booster your child who lives without diabetes?  Look for those events and highlight them.

Praise is cool.  Everyone likes it.  Give it away, and often, to ALL of your kids.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

They Were So Young, We’re Parents, it’s what We Do

Posted on | by tomkarlya | 3 Comments on They Were So Young, We’re Parents, it’s what We Do

Our eyes become cloudy after a while.  While the road roars past us at 200 miles per hour, we see only a frozen puzzle piece held in the grips of time as, a memory, at best.  Speak to most parents and they will tell you sentence, chapter and verse what happened the day their child was diagnosed with type 1 diabetes.

They will know what they were wearing, they will tell you how their day started and more than that, they will tell you how their day ended. One parent went home to take care of the house and any and all left inside, and one parent pulled up a cot, a chair, or anything that could hold them as they stayed with their child that first night diabetes entered their lives.

There are a million stories, some as heartbreaking as there are those that were just a quiet roar; your new normal has arrived. Some became huge worldwide advocates and some just tried to get their lives as close to normal as possible, to live like life was at one time.

Our heads became full of stories and facts and what was needed moving further. We listened, we nodded, but we also knew that what we needed to know we would learn by doing not by what others said.  The newest and meanest definition of on-the-job-training. Our wonderful relatives trying to be experts with what this was and how long our children would have it, would be so far removed from what we would learn. It’s not the same diabetes as someone’s grandma, or even someone’s dog.  It is our child’s diabetes and it is here to stay.

Some full of passion argue points that those of us who have been at this a while, don’t feel the need to partake anymore.  Shots vs. automated, cloud vs. electronic, and even bare feet vs. sandals at the beach.  What we know, is what works for us. After a while you learn, it becomes how THIS impacts us because at the end of the day, it’s truly all that matters.

The world of diabetes will not change unless many pick up the fight. As long as I have breath, that fight will continue.  That fight for a cure.  That fight for a better world for those who live with this disease 24-7-365.

This week was year 27 in this battle.  And as tired as I may be and as much as I don’t understand so much; it pales……I mean really pales……..compared to those who live with this disease.  The Kaitlyns, the Robs, The Kellys, The Michaels, the Scotts, the Marissas, the Nors, the Monicas, the Sams, the Nicoles, The Jims,  and the list goes on and on and on.  They are the heroes…..the REAL heroes.  They live life.  And that is a pretty special driving factor for us, the parents.

Those who know, need no explanation. Those that don’t, would never understand anyway. When they get a break, we get a break.
Not before.
We’re parents, it’s what we do,
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

The Focus MUST STAY IN WASHINGTON, Not The Problem with Less Expensive Insulin

Posted on | by tomkarlya | 2 Comments on The Focus MUST STAY IN WASHINGTON, Not The Problem with Less Expensive Insulin

There has been much discussion of late regarding insulin which is available at places like Walmart for a very reasonable expense.  Some are saying/reporting that people died by going on that particular insulin which they were forced to do because of the cost of the insulin usually used has skyrocketed out of control.

I’m not here to argue this point; sides are drawn and the battle to be right is occurring in many places all around us in the diabetes community.  What I would like to do is make a few points for all of us to think about, while we wait.

What we are waiting for is my first point——there is absolutely no reason on earth why anyone should stand idle and not keep up the pressure of advocacy at the boneheads responsible for these out of control insulin prices.  That fight needs to continue and needs to continue constantly.  There is absolutely NO REASON for any individual with this disease to not be given the insulin, THE BEST INSULIN, they need to survive.  That point needs to be clear.

Whether some like it or not, believe it or not, many people have survived using what is available at a lower cost. Before many of the diabetes tools in our diabetes tool box now available, there were limited resources.  When the insulin ‘hit’, sometimes it was like a crashing airplane.  Crashing was as much in our discussions as high and low blood sugar.  It was part of what we had to deal with, and what we had to do and with proper medical professional help, we charted the best course available.  Guess what? Some people died back then using this method.

Guess what?  Some people also have died because of something to do with their insulin pump.  Whether it malfunctioned or was not used correctly, is not always known.  People also die when a car malfunctions or is used incorrectly. We cannot stop driving anymore than we (or our kids) can stop taking insulin.  In the latter case, stop taking insulin is a death sentence.

Any fool can go out there and say that this is much ado about nothing because an alternative is available at Walmart.  It’s a stupid statement at best. TOTALLY AGREED. But……..BUT, until such time that this can get fixed, people with diabetes need to take insulin. And to change ANY course of treatment must have, and needs to be done, under medical supervision only.  There is no WAG (wild-ass-guess) here because that can cost you your life.  ANY CHANGE TO YOUR TREATMENT SHOULD BE DONE UNDER MEDICAL SUPERVISION ONLY.  PERIOD.

Remember the discussion how treating this disease is very personal and is different with each person? That there is no ‘one size fits all’.  Even with medical inclusion, we still have to pay particular attention to everything diabetes.  When you change one thing, it changes many things in one’s life.  It’s the truest form of real-life-domino-impact that one will ever see. So if some people are making the lower insulin work for them, are they wrong? If some people want the fire to get turned up in Washington so people can use the insulin they want; are they wrong?  What happened to one person’s treatment does not necessarily have to be the same as another’s?

I’m seeing a ton of energy from people trying to convince the world that it’s better to have nothing, than use the less expensive insulin available.  That’s just not true or my daughter, and many others, would be dead already because we were using that-type- ‘cocktail’ for years.

Is it a solution? No. It’s a stop-gap measure until the folks from Washington can get their heads out of their……let’s just say, the ground. Want to argue that point, argue it with Washington folks because arguing with those who do not have the power to change anything, is wasted energy.  No one should want or have the need to be right about this, what we all need is to see this resolved.  The pressure needs to stay with those who can, and who must; rectify it once and for all.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Brittle Diabetes?…….and Other ‘Fun’ with Names

Posted on | by tomkarlya | 1 Comment on Brittle Diabetes?…….and Other ‘Fun’ with Names

I have always found some of the terminology used in our diabetes world a bit…….odd.  How many of us have been in the company of strangers when our child, who is a good distance away, checks their blood sugar and shouts to us; “I’m high again!”  Funny to watch the strangers hearing this and shaking their heads in a ‘tsk-tsk’ shame on us and our drug addict kids.

Not a big fan of the Type 1/Type 2 naming club either.  Now I also think that we can waste millions of hours in trying to change it and many have certainly tried.  But I am not so sure I have ever heard of a Type 1/Type 2 Cancer, allergy, MS, cystic fibrosis, flu or anything else for that matter.  Type 1…..type 2…..really?  Nonfunctional Pancreas Diabetes……..or NFP………and Low-functional Pancreas Diabetes LPD….perhaps.  But truthfully Type 1 and Type 2 is surely better than Juvenile and Adult Onset Diabetes……what a mess THAT was…….right?

Another phrase I have always hated, never understood, and also lived with in one of our children is Brittle Diabetes.  Short version/definition is extremely hard to control diabetes.  Brittle sounds like if you drop it, it will break. Also interesting that it is the same name as a hugely high in sugar peanut-candy treat, don’t you think? It certainly does not describe what we went through.  Perhaps, ‘what-the-heck-is-going-on-we-never-sleep-she-has-no-idea-what-she-is-feeling-and-we-all-feel-out-of-control diabetes might be a better name although tad long I admit.

How about in your life? What diabetes phrases or words have had you scratching your head? Perhaps it keeps you up at night.  Or up in the early morning.  In the dawn….a dawn phenomena, oh wait………

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