Where Are These People…….Seriously????????????

Where are youI have no right to feel this way.  I want to get that right out in the open at the onset.  I mean what everyone does, they do because they can, do, or choose to do……or do they?

I saw a name today, I do not want to mention where or how but they were speaking of their child with diabetes; and perhaps they have done a lot; but I have never seen their name attached to anything significant and man-oh-man have they the power to make a difference.  The question needs to be asked…..are you doing enough?

Just to be clear, I am not speaking of the PWDS, moms and dads and those who do what they can do and they do a lot.  I am speaking to those people who KNOW THEY HAVE THE POWER AND INFLUENCE to make a difference; they know when they speak people will listen.  And what???????……….zippo.

I watch as so many orchestrate, organize, and just do things to try to make a difference.  They create petitions for awareness, they try to raise an additional dollar for a cure, a camp, or to help those in need.  Yet, so many have the power of the media that if they CHOOSE to, they could shine a very bright light on a specific side of diabetes.

Now I am not speaking of showing up at an event and giving a check because one can; I am reminding them of people who give because they HAVE TO.  I am reminding THEM that there are those who give of their time and their money because diabetes will just not do in their lives. These people give until it hurts.

If you have a child with diabetes are you giving until it hurts? 

Are you giving what you can because it’s easy?

I’m sorry when I read about Halle Berry curing her diabetes, Paula Dean doing or not doing what she should, and I am even more sorry that when they GET IT WRONG they are catapulted to the front pages across the land.

And still, discussions are held in so many foundation-circles in an attempt to “reach that” person who has a diabetes connection to see if they can help.  We should not HAVE TO REACH out to them, they should be reaching out to us (the collective us who can but them to good work).

(This added by the writer after a post from a reader:  I am sensitive to the fact that some people, being in the limelight, may have their children’s privacy compromised—-no one wants this either; mine is but a question to those who have the power to make a difference; are you?  One can still be involved without media attention and I know this as a fact because I know some are doing so.   My question is just that—-a question to ask are you doing enough?) 

There are those that get involved and do much…..obviously I am not referring to them.  I don’t care if a child was diagnosed 30 years ago or two weeks ago.  ALL OF US must give until it hurts.  ALL OF US MUST DO UNTIL IT HURTS.  Celebrity, movie producer, athlete, movie star, moms, dads, people with diabetes……if we do not DO IT (whatever that defines) NO ONE WILL DO IT FOR US.

If you are not involved…….guess what……..you are not involved.

I heard a great line a few weeks ago; a friend of mine was talking to a friend who was stating how much they have done, or did do, and were not as active in doing so much anymore.  My friend asked one simple question: “How’s that going for you?”

There is still no cure and there are still places that do great work that are struggling badly.  THE. JOB. IS. NOT. DONE. YET.

Need any ideas……you just let me know.  You are the light bulb…..I will help you shine like you never have before…..just drop me a line.

Our kids still live with diabetes every day.  Get involved until it hurts……our kids deserve nothing less. 

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

A Questions is Asked…..Diabetes Needs More? Do We? Your Thoughts Please.

we need moreOn FB yesterday I read the following question from a parent:

I am tired that everywhere I go there is a support this or support that except for our t1d children and families does anybody feel the same? In the world where we find products all turning pink or a telethon or paper Shamrocks being sold or even a hot air balloon paper cut-out being sold at registers; the question is a good one.  Do we need more?Being with the Diabetes Research Institute Foundation (DRIF), I often marvel at the outreach capabilities of our colleagues at the ADA and JDRF.  I hear people say to us all the time, “who are you guys?”  “What’s the difference between you and the JDRF; or you and  ADA?”  “We love that you guys are totally focused on a cure and know you are known for collaborating but what is the relationship with the DRIF and other organizations?”  

And there are other diabetes organizations as well that all are constantly looking for assistance and I imagine asked the same questions as we, at the DRIF.  scholarships to those with diabetes, camps, foundations, diabetes centers, offering supplies, other research arenas……….if they all came together under one umbrella I assure you that the world would definitely know who that entity was, but there is not just one entity dealing with diabetes.

 
Nor should there be.In as much as I’m the first one who states that we all need to continue to strive and find ways to work together; but thinking for one second that all diabetes organizations should work as one is a naive thought at best.  Work together, when needed?….yes; work as one?…no. If you Google ‘diabetes non profit organizations’ you will see 3,130,000 ‘finds’.  That is a lot.Diabetes is a very complex disease with many different aspects; and so are there many areas of diabetes in the nonprofit arena needing support.  Volunteer and financial support of the many different aspects is very important.  People feel it’s important to support the partnering with private companies for better management tools (JDRF), people feel it is important to fund education in schools (ADA), and advocacy in legislative branches (ADA, JDRF), funding for scholarships (Diabetes Scholars Foundation) Funding for Camps (Diabetes Education Camping Association), research for a cure (Diabetes Research Institute Foundation, JDRF, and some by ADA), support of athlete initiatives (Chris Dudley Foundation, RidingOnInsulin.org, Iron Andy Foundation and many more), not even to mention the many organizations that help people aboard (Diabetes Hands Foundation, International Diabetes Federation, Insulin for Life, and LIONS International  to name but a few) and even on the local level there are thousands more non profits helping locally with diabetes assistance.

All of these organizations (and there are many, many more) do great things helping the many aspects of ‘the diabetes world’.  However, there is not a one-singular-all-encompassing diabetes organization.  And it is probably for that reason that one item, like a shamrock does not represent all of the different diabetes interests.

Now it may also mean that same events occur on the same date around the country; it may mean two health fairs occur simultaneously, and you may sometimes feel ‘pulled’ to make decisions on where you spend your time, your energy, and your money.  But you have choices, and the choices are yours.  Go one year to this event, next year to another.  Don’t get frustrated with what is or is not happening or is on conflicting dates; make a choice and run with it.  You will always have another choice to help where YOU WANT to help, when you want to help.

Here is the trade-off.  In as much as there is not just one universal diabetes organization, you have many choices on where you spend your energy.  What is important to you?  I have stated many times to not get involved in one organization OR another; but rather get involved in one organization AND another (and maybe AND another).

 
So to the woman who asked the original question, and I thank her for asking, I answer this way: we have so many choices out there to help those with diabetes; if there are almost 26 million people with diabetes in this world; and if each person along with two loved ones impacted by diabetes did just one thing to help, over 78 million people would be doing something right now to help in the ‘diabetes movement’.  And further, if each of those people gave (or raised) just 100 dollars annually; it would be more than enough to accomplish every single goal out there.
 
SO my questions is not; how do we achieve one diabetes organization?; but how do we get more people to help because more do not help; than do.  And THAT IS something we can all do something about, and we can start right now by asking the person in the mirror.  Just ‘don’t do nothing’.

I am a diabetes dad. 

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It’s Your Fault Diabetes is in the House.

faultWhy did this happen?  Did you ever ask yourself that question (or in my case, what day have I not asked that question)?

“Well you know Tom, when God closes a door, he opens a window.”  What?
or
“Well you know Tom, God will never give you more than you can handle.”  The person who told me that inherited a fortune, has perfectly healthy kids, and has not had to work in the last 5 years.  I do not begrudge the fact but certainly easier for him to say that phrase than I.

I’m tired of being tested by fire on a daily basis.  I’m tired of observing others’ lives to show me that I really do not have it so bad.  But why do any of us have to deal with any of this?

I want someone to blame.  Or at least, something (fate, life, or whatever) to blame as if by doing so that will make anything easier.  As if it will make diabetes more palatable if I can pinpoint the reason it’s here.

Want to cause a riot in your house, try this.  “Honey I went through the genetics on both sides of our families and it seems our child’s diabetes comes from your side.” 

Let me know how that goes.  I haven’t done it but I know someone who did.   I’m not saying it started at that point, but they are now divorced.

So we can waste much time on the why or the how…..or we can move forward.  It is a choice we have to make.  I choose every single day to move forward.  I work toward trying to change something or build something every day.  If I spend my day to just “Not do Nothing” than my mind can stay fully busy and I do not have time to ask myself why. 

I don’t have time to think of ‘the why’ so I choose my time to try to make a difference….and in the long run…..that will help my two kids with diabetes so much more than feeling sorry for myself?

Why did diabetes come into your life?  Let us know.

I am a Diabetes Dad

 

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

Blue flame extinguishedI 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.

NOTE: Hit ‘Like’ on my Diabetes Dad FB page to stay informed

Hello…..But Here’s the Question……..

Well the world did not end.  So we go on.  What will you do?

Now that the world has decided to stick around—-we must continue in our fights.  Fight for a cure; fight for better management tools; fight for better education.

Now more than ever we need to continue our voices….do not sit on the sidelines in 2013; decide to make a difference.  Don’t do nothing.

What will you do in 2013—-your actions may inspire others—-kindly reply and let us know what you will do in 2013 to make a difference in the world of diabetes; it will inspire others.

I am a diabetesdad.

Tomorrow is…………Yeah, so What?

Tomorrow is Diabetes Awareness Day; November 14th, the birthday of Frederick Banting one of the few credited with the discovery of insulin.  At the time, the headlines stated insulin was a cure.  It wasn’t; still isn’t.   But when one has nothing, it surely was a great step in saving lives; still does. 

November 14th, tomorrow, is by no means a holiday to me.  When I was a child and Mother’s Day rolled around I would say to my mom, “When is Child’s Day?”   You all know the answer to question as I am sure every mom has the same answer; (all together now) “Every day is Child’s Day.” 

That is somewhat how I feel about diabetes.  I do not need a specific day to be reminded about diabetes.  I do not need to see ‘something special’ done on the fourteenth of November each year.  We, as a community need to continue rowing together demanding the best from the companies and the organizations we support.   We need to continue to work together to make sure ‘the media’ gets right and we see diabetes painted in the light according to the specific types and what that represents. 

Because when it comes right down to it, in my life, November the fourteenth is the same as every other day.  It will remain like every other day until there is a cure; 100% every day.  How about you? 

What have you done today to try to make a difference in the world of diabetes; or in the life of your child with diabetes above and beyond daily management?  I might be for starting something on this date if never done before, but when it comes time for ‘doing something’ we better be doing that every day of the year or we will never move the needle (pun intended) when it comes to diabetes care and a cure. 

I know, that management in itself is much to ask isn’t it?   But we all need to “not do nothing”—-if our child deals with diabetes 24/7/365—-why are we not doing more?  It will not go away until we all work diligently to that end.  Cure, better management tools, and getting involved–never be satisfied with where you are at.  EVER.  In it to end it…..need help to get involved, just ask me–I have plenty of ideas.  

Each soldier has to take care of their own well-being, but when together they become an ever forward moving army ready to do battle.  Nothing less can be expected by anyone else who ‘has skin in the game’. 

Let’s work to making November 14th about a week before Thanksgiving and nothing more. 

The diabetes battle is every day.   Get involved today. 

I’m a diabetesdad.

The Worst Kind of Diabetes is………

You Have a Job to do.

Diabetes Awareness month is November. 

We’re not going to wait.   Too many are getting it wrong now, today.  Do something today that could have an impact on Diabetes Awareness Month for 2012.  Ready?

The worst form of diabetes…….is getting it wrong.   Find a newspaper in your area and either email or send a letter.  Here is the copy of my actual letter that I sent to Mr. Fred Groser, Publisher of Newsday, here on Long Island; and I also sent to the Vice President of Editorial Services for Cablevsion—it took me 7 minutes and 37 seconds to do both.  If needed, take mine and tweak/edit as needed……but do it.

Dear Mr. Groser,

My name is Tom Karlya and I am an online writer about diabetes (www.diabetesdad.org and www.dlife.com/diabetsdad), active in many diabetes causes, and probably most importantly; I am a father to two children who live with Type 1 Diabetes everyday.

 As I’m sure you know, November is Diabetes Awareness month and I, along with thousands of people across the nation who are touched by this insidious disease, are writing to our local media to ask that should you run any stories about diabetes; PLEASE make sure you ‘get it’ right.

When referring to Type 2 Diabetes designate it as such; and the same with Type 1 Diabetes, or Gestational Diabetes, or to whichever form of diabetes you are referring.  There is so much misunderstanding and confusion about diabetes, help us educate the public to understand fully by being specific where needed.

Thank you for your time.  You can contact me directly or feel free to reach out to the Diabetes Advocates at info@diabetesadvocates.org; their website is www.diabetesadvocates.org; they will be glad to answer any questions you have about the different forms of diabetes.  Thank you for your support during diabetes awareness month.

Regards,

–Tom

Imagine if just 1000 people did this to two forms of media across the country this week getting ready for Diabetes Awareness month.  You can even cut and paste what I have given and tweak it. 

November is Diabetes Awareness Month and today …is…..is…..um……’help the media get it right in November’ day……..so let’s go.

If we don’t try to correct the problem, we cannot complain when they get it wrong.  Should you do it, send me a response to let me know the name of the newspaper and in what city and state.  This is an easy one, but one that can surely have an impact….let’s do it together.  ‘Don’t  do nothing’…….and do it today.

I’m a diabetesdad.