diabetes camps – DiabetesDad

Goodbye 2019—-Hello Modern Roaring Twenties

Posted on December 31, 2019 | by tomkarlya | 1 Comment

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 December 21, 2019 | by tomkarlya | 1 Comment

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’

Gosh, They Know so Much More than Me….uhm….Maybe Not

Posted on February 26, 2019 | by tomkarlya | 3 Comments

My heavens I wish I knew what they knew. Have you ever found yourself saying that to yourself when you’ve seen the conversations occurring on-line? You know, that intimidation when someone says something and you know that you believe the direct opposite on what is being said but heaven forbid you should say anything because of the fear of having to be reprimanded. By who? Someone you’ve never met but are friend s only on FB? How silly do they make you feel?

Well forget it.

I’ve always gone about caring for our child’s diabetes with a thought process that I know absolutely nothing about diabetes. Now at first glance that may make one think that I would be swayed all around like a garbage bag in an alley on a windy day. But actually the complete opposite occurred. Because if I did not know something, and I heard something; well I would go and find out whether what I heard was correct……or not. I took people’s opinions at only face value until I went and found out……for myself.

You do not need to be right on a FB page……..you only need to be right in doing for your child and your child’s management with this disease. What a waste of energy to read as parents ‘go at it’ on a FB thread. To what end? If I read someone’s thoughts that interest me, I find out on my own. I research the answers.

Quite a few times in my life, my original thought on a diabetes matter was changed as I learned more. And some times my thoughts changed drastically. Being right in an online discussion…..means……what? But finding out the truth, well if your child wins, what else matters and that’s the payoff.?

So the next time two, three, four, or more parents are in a heated discussion over how to do something…..listen and use the internet what it is really good for……research. My friend Jeff has a great saying; ‘show me the data’. If you find the data to be true, it’s a real good start. Who cares about my opinion? When it comes to my child’s diabetes management, I don’t even care about my opinion……..I care about what is truth and what works. The answers are out there, find them, Don’t be intimidated by those who are loud and pushy to just ‘be right’………care for your child the way you know best……your way.

And if no one knows it but your child; that’s ok too.

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

Keep on Swimming….I’m Asking :)

Posted on February 19, 2019 | by tomkarlya | 2 Comments

We ‘gotta keep on swimming’. Ahhhh those famous words from Dory in the finding Nemo movie has so much for us to learn, don’t they? Today I’m here to ask a favor so feel free to bail now if you are so inclined. 🙂

I believe there are many GREAT diabetes organizations out there and I support as many as I can. It’s no secret that mine is the Diabetes Research Institute (DRI) and why my career path has me here for over 15 years. Our kids must stay healthy today. That, there is no question. But the cure is the goal.

It is has also been the goal of the DRI since the first day they opened the doors……all the way to today. Hard to keep that focus, and no easy task, but the DRI remains committed, since day one. I still have hope, strong hope, that one day we will get to the cure we search for tirelessly. When? Well not sure and it’s a tall ask but that does not mean we should abandon the hope. Well I choose not to give up that up and I believe the DRI will stay at the forefront of that search.

It’s great to believe in an entity that will just NOT GIVE UP either until we get there. My kids deserve that hope. We are not naive, we’ve been at this for some time. But we also know the incredible work that continues that will lead to 5 clinical trials simultaneously in the upcoming months. With that in mind, our walk is coming in March. It is my goal to participate, cane and all, as much as I can. If this column has inspired you in any way, helped you in any way, or ever made you smile please consider donating a little something to our team, Two Too Many.

Having two kids with T1D is too much. I want it cured and until then, I’ll keep on swimming toward a cure. Please consider a donation of any amount. Click the link above or here.

Thank you for caring.

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

Machines Break…..Be Careful of the Image Your Child Sees

Posted on January 26, 2019 | by tomkarlya | 2 Comments

As many people know, I am fairly active with hurricane relief efforts. I was once patched in to someone overseas via a satellite telephone. The young man was in dire need because his insulin pump broke while he was moving out of his home to avoid the rushing waters. He worked for a company here in the USA and they reached out while they were on the phone with him.

I asked them to translate and see if the man had insulin and syringes. When they told me indeed he had them, I asked why doesn’t he just give himself a shot. They translated and stated that he would do just that. I can not emphasize how true that story is and it scared me to no end while it was happening. It’s my hope that it was just so much happening so fast that the thought just did not enter his mind but he did not know that an injection could work. But if it was the fact that he was not ready to use something else……that’s a problem…..and it could have been the cause of serious consequences.

I also read many times on-line how lost people become because “a disaster” happens and their management tools become unusable. Many have stated they would not even try certain diabetes management products because they are so afraid of what could happen. Let’s look at both sides of this discussion.

In 2017, the most recent data from the National Highway Traffic Safety Administration (NHTSA), over 37,000 people were killed in car accidents. Does that mean we would not drive in a car again? Maybe, to some. But for the most part we get in and out of our car countless times a year not thinking once that here would be an accident or a mechanical failure in the car, do we?

Insulin pumps and CGMs are machinery. But as so many say regarding their diabetes devices, “when they work, nothing is better”. Just as in how lost we would be without cars, it is certainly better when they work. Not unlike diabetes management tools. But also know this; I would be hard-pressed to name any machinery that will not, at some time or another, fail. That statement is not to scare you—-it is to make sure you’re ready.

Ask yourself, what is my back up plan? What will happen when the insulin pump malfunctions? Has your child even used an insulin pen before? Have they even seen one? Do not wait until it is time to use something for the first time that your child is being introduced for the first time. I’m of the belief that back-up devices should be introduced, and even used, prior to that pump or cgm breaking….know this….they will break.

And the most important thing to remember when a device breaks is that your child will closely mirror you. If you are not running all around in a crazy panic, chances are your child will not either. How many times do the local fire departments share that you should be prepared when a fire hits your home?

When something went wrong with our kids’ diabetes devices (and I so strongly credit Jill, my wife, for this) the plan was rehearsed and ready. Back up plans even had back up plans. The kids were not panicked or freaked out because something different had to be utilized. Three different roads can get you home, your only lost if you have not tried them

Take the time to work through scenarios of what to do before they happen with all those who care for your child with diabetes. That way when they things are ‘flipped apple-carted” your response and actions will be second nature. Things break, they do, keep the catastrophe level by being ready. Keep your children calm by staying calm. Be calm by being prepared.

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

Legislation on New Bill to Tax Air we Breathe

Posted on January 21, 2019 | by tomkarlya | 6 Comments

In a very discreet and without fanfare congressional move, both houses today passed legislation that states commencing on January 1, 2020 there will be a tax placed on each American citizen for the use of air which is part of the mainland United States. Senator John Consigliere of Wyoming stated that the move was made to further be able to pay for the many means of purification now needed for breathable air……………….

…….okay……got your attention??????

Stupid isn’t it that something so needed would have any cost to use it? Something we would die without. So needed for us to live that it does not make any sense to think we would have to pay for something we have to use to stay alive. There will be no tax, there is no such Senator from Wyoming.

BUT for goodness sake can someone, anyone, possibly explain to me that people who need insulin to live; in some cases cannot get it due to cost. If you think about it, there are many, many medications you can take to make your life bearable and better. Some could die, if the med was not taken. But every single person—–EVERY SINGLE ONE of those who live with type 1 diabetes would die if their insulin was not available. Some sooner than others. And here’s the story, some have died already.

One was too many–and why?
Because of GREED!!!!!!!!

What does the government need to see to step in here. Until a solution is reached, let’s call on the government to relax any and all legislation that prevents people from using whatever means necessary to obtain affordable insulin. If an executive action can get a wall built (well, ok, threaten to anyway)….cannot the same action open the boarders, ease the restrictions, open the floodgates to allow insulin to be purchased at an affordable price?????

Once we figure it all out, we can backtrack a little but until such time, an emergency act can save lives and surely……it will!

Send this everywhere you can. Until such time that we have an answer, this is an emergency action, an executive action. to save lives.

This is not a favor to make life comfortable. This is an act of government/congress/senate/executive to allow insulin to be purchased……..at the end of the day, to so many, it’s as important as air.

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