death by diabetes – DiabetesDad

BLOG WEEK ENTRY 2: Please Save Our Children

Posted on May 14, 2013 | by tomkarlya | 2 Comments

This is blog week. We, who are bloggers, have been challenged to write about the same subject matter on a given day with a different topic each day. Today’s topic is in response to the various petitions that have been circulating the DOC (diabetes online community) of late. Today’s subject: What/who would we write to petition for change?
I would do two petitions that have a synergy between them.

Dear Person/People Creating a Petition,
The undersigned ask, no-we beg, you to do your due diligence before you create a petition. Make sure you are asking the right questions and that you are addressing the right people to make ‘the’ change. The little time we have becomes full of frustration when we are asked to do something that is being done on mere emotion and not a factually based effort. If the due-diligence is not done, you are wasting your time, the person who receives the petition’s time, and you are wasting our time.

Getting it done for ‘getting it done’s sake’ because one thinks it is the right move is not good enough. We ask; why just do something when you can do something ‘right’.
<Signatures>
(Editor’s note: This has been done many times and is not a reference to any one specific petition. It is a reference to any, and all, that have not been thoroughly investigated before signatures were sought.)

I do not know who I would send this next petition as I have not done any due diligence yet on who should receive it; but I do know that it is a subject matter THAT NEEDS addressing and is almost a continuation of my article from yesterday.

Dear (whoever should receive this petition after we do the homework):
We, the undersigned are outraged and pained to read, once again, that a child was taken to their doctor with flu-like symptoms that also would or could reflect the same symptoms for T1 diabetes and a simple blood test or urine test was not completed to verify or rule-out a diagnosis; resulting that a child was diagnosed with diabetes at the time of their death.

We implore you to take immediate action to implement a policy of ‘best practices’ that could be forwarded to all pediatrician offices, general practitioners offices, and/or school district head medical official/personnel instructing them that they should always be ready to test, and/or order a test, to diagnosis T1 diabetes when questioning when flu-like symptoms are evident in a patient.

It is not up to us to dictate what these exact procedures would include; but in the last year at least 5 children have been diagnosed with diabetes at death and we implore you to ensure that correct measures are implemented to avoid such a tragedy to occur ever again. In each of these cases, the family visited their child’s medical professional with flu-like symptoms, when in actuality, they were in full-blown ketoacidosis.

We offer ourselves to be included in an immediate ‘focus group’ or ‘think tank’ to correctly fact find the necessary statistics to move this consideration forward. If this is not within your jurisdiction please know that your are respected highly in your field and may we ask that we at least open a dialogue, so we may know exactly the steps needed to prevent a death from this gross mis-diagnosis to occur ever again.

We seek your wisdom and influence at least; and a course of action if possible.

That is it for Day 2 of blog week. As a blogger, I have completed the task for day 2; please note that is not merely an exercise for us as bloggers; it is to continue a conversation. PLEASE reply and/or share and let us know your thoughts. Thank you.

I am a diabetes dad.

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The Chair is Empty….We Have Lost Another.

Posted on April 13, 2013 | by tomkarlya | 8 Comments

After speaking to a mom who lost a child recently, who is dealing with the loss on her own even though I gave her many resources which she stated she may utilize, I was struck by the voices we have lost that must remain ‘loud’ with all that we do. I wrote the following after I hung up the phone with this incredible mom.

There was a time people commented and smiled on my young voice that matched my cute face that sold the lemonade to raise money for a cure but now;

the chair is empty.

There was a time my daddy fixed his bow tie and mommy looked really pretty and I was handed a microphone to speak why I wanted a cure but now;

the chair is empty.

I was on the front page of the local newspaper for my fund-raising events, thousands of people participated but now;

the chair is empty.

My mommy is sad now, daddy and she hardly speak these days, and the joy of getting ready for those special events don’t happen any more because at my part of the dinner table;

the chair is empty.

Because I am gone my voice cannot cease. My existence cannot be shut out. Because I am gone it can never be that I never was; even though now

the chair is empty.

Scream louder for me now than when I was here, because my story is not how I was able to live but my story is now about how

the chair is empty.

You are not speaking for just me now, you are speaking for all those who might end up like me; people left behind to try to pick up the pieces in a home where

the chair is empty.

So hear my voice from afar, at a time when we all ‘looked like’ nothing was wrong is not the only time to shout the wrong with living with diabetes; it’s all the times when the voices have been silenced that others need to scream the loudest; or it just could turn out that those pretty little dresses; and tiny little gala suits; and those bikes; and those sneakers; and those purchase-at-a register-scannables; those lemonade stands; those garage sales; those lectures at schools; all get taken away and all there is to see is that

the chair is empty.

Another one has passed away. There have been too many empty chairs lately….JUST TOO MANY—-and I’m tired of it and I’m mad as hell; how about you?

I am a diabetes dad

I am adding a PS to this column at 1:10 p.m. EST: I know that we all need to live life in the positive—-many of my articles state that. THIS article is meant to be more than thinking positive; it is more than we need better management tools and a cure quicker; it is more than to stay positive. THIS article is specifically not to forget those silenced voices. EVER! We need to be mindful of another side to this disease. Those that were diagnosed at death–those voices need to ring out loudly to the GP medical and school community-at-large to be on the lookout and do a simple blood test; whatever it takes from the medical text books to the halls of Congress—-DO THE TEST. Those who died from a hypo/hyper while they slept. Remember them. We need to remember these voices; all of them in our battles while we stay focused on the positive and living life to the fullest. This is the point of today’s article. Sort of; ‘never forget’ in the midst of all that we do.
Just wanted to add this point. Thank you. DD

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A Blue Flame that Should Never Be Lit……Your Input is Requested to Extinguish it.

Posted on January 5, 2013 | by tomkarlya | 46 Comments

I had just read about a 7-year-old child that was diagnosed with diabetes upon their death. I was livid.

This just seems so unacceptable to me. My experiences from hearing prior stories go something like this:
flu-like symptoms take place, it gets worse, trip after trip happens to medical offices/hospitals, no one can figure exact cause, and by time anyone can figure everything out……the individual passes away. Now I DO NOT know if that is what happened in this case but I am informed the diagnosis was at death.

Unacceptable.

I am so angry that I decided reading about it and not doing anything about it is just not in my DNA. Just ‘Don’t do Nothing’ has been written or stated by me a million times. I reached out to The American Academy of Pediatrics to discuss the matter.

I am in the process of figuring out what we all might do. Poster campaign, public service campaign, and I am not sure what….but SOMETHING.

I’m not stating that someone or a group is doing anything wrong. All I am saying is that we should do all WE can to make sure it doesn’t happen again. There are many laws on the books named after people who, upon their death, the families felt a change needed to be made.

In our diabetes community, that law (or action needed) would have an entire list of names.

You know it was really incidents on playing fields that made the defibulators placed everywhere. It was death in kids that made a rallying point to become a reality to make defibulators placed everywhere.

I might be wrong, but if a blood test would have revealed something, it needs to be done. I may be way out of my league, here but something needs to be done, what do you think?

I learned, AGAIN, yesterday that his community can make a difference. Not merely hundreds, thousands of people, responded trying to help yesterday in an incident now resolved. When we as a community set our minds to do something we can change the tide.

Once I figure out a course of action, I will let you know.

Are you in? Do you think that we as a community SHOULD try to do something? Reply to this blog as I want/need to hear if I am just angry or DO YOU think something can/should be done? What are your thoughts?

I am a diabetesdad.

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T.G.I.F. (Thanking Great Individuals Forever) ……Mile 23…Something Many Will Never Know

Posted on November 30, 2012 | by tomkarlya | 1 Comment

Today my Thanking Great Individuals Forever (T.G.I.F.) is being given to the efforts of a group of people albeit began by one.

I originally was going to give this to a woman who made a new meaning of the words ‘MILE 23’, but I know she would say, “…… give it in memory to my son.” More on that in a minute.

You see, Mile 23 is a mile run in silent during any of the incredible bike rides you see happening around the country. From Death Valley to the NYC-Washington trip, these fabulous bikers raise an enormous amount of money to help diabetes causes; but yet it is Mile 23 that grabs our attention when at each given ride, this mile is done in complete silence. Just the chains rattling and the wheels spinning in absolute chilling harmony of tribute by groups of two wheelers.

This MILE 23 is a memory mile. A memory mile started in honor of the memory of an incredible young man named Jesse. Jesse passed away due to diabetes on February 3rd, 2010. His mom, Michelle, has made it a point to make sure that what happened to her family does not happen again. But it has. And now “that mile 23 for Jesse” is done for all who have lost this bitter battle of diabetes.

And to those who have had it happen, they have reached out to Michelle and Michelle has been there for them. She knows. And unless you have gone through it yourself, you would never understand. I do not understand; nor would I even begin to relay that I do, I don’t…..truthfully…..may I never.

But Michelle has spent almost 3 years re-telling her story and re-motivating others to know that we all cannot stop and should not stop until a cure is found. So at every ride, Mile 23 is reserved for reflection of those who lost the battle but more so; to remind the rest of us the importance of doing what we can.

Every time I see the number 23, it reminds me of everything Michelle, The Nicholsons and so many others are yelling to us by their utter Mile 23 silence; “……do not stop. If we are not stopping–you have no right to stop.” And they would be 1000% correct, we have no right to stop. Don’t do nothing.

Michelle stated that she received a two page letter Jesse wrote from one of his teachers. She received it from teacher after he passed away. In the letter he said how proud he was of his mom for everything she did in his life. Because of this letter she states, “….I know he’ll be there, and he’s proud of me.”

Think about that for a moment, please.

He was proud of Michelle, his mom.

To the so many that redefined the meaning of a simple mile marker–number 23, especially Michelle Page Alswager, we are proud of her too, Jesse. Thank you for lending your mom to the diabetes community. A labor-of-immeasurable-love that will make sure your voice and memory are never, ever, silenced……as long as we all see a Mile 23.

I am a diabetsdad.