Only Teaching Ourselves Misses a HUGE Point

arrows inThe world around us.  Asking for advice is a wonderful thing.  At the touch of a finger you can seek a number of responses from novice to professional.  Advice. Inquiry.  Fact.  You want it, you can find it right online.

But when it comes to education, do we need to move beyond the outreach of a ‘post’ on a FB page.  Do we need to do more?  When it comes to education, do we need to think that we are reaching the masses with our message merely by sharing with people on-line just in our community?

I think not.

A message must cross the eyes of the audience we seek at the exact moment we post it, or shortly there after, or the message comes and goes without reading; for the most part.  If the message resonates with many, it gets shared and shared again; thus increasing the number of eyes that share in the messaging.  Sort of a tough haul to rely on what works and what does not……yes?

Getting the message out.  If it’s an important educational item, you must ask yourself who is seeing the message?  Clearly it has been a pretty important priority of mine for people to understand the warning signs of diabetes, and specifically type 1 diabetes (T1D) of late.  It has been a passion and I know that I am surely not alone.

But we MUST TAKE this battle outside the confines of the web pages or we will never be successful.  People need to hear the message that they can download posters (www.getdiabetesright.org, is just one of many, the one Kim May and I created— and there are more) and use them to get the word out there…..have you delivered even one?

You can down load the letter created by the NASN (National Association of School Nurses) and bring it to your school nurse (and beyond) to warn others that THE flu/virus symptoms evident may just not be just that……have you passed out one?  Click here to see it, print it out, and share it. NASN Document School Nurse Letter.

If we share, only to share with each other, the arrows turn inward; we need them to be outward.  We need to reach out beyond our own community.  We ‘get it’ already (we can only hope).  But it’s those who are on our sports teams, in our schools, and in our communities that may not get it……we must get the word out to them.  We must educate them.

This is my passion and that is nothing new; but this holds true for any passion you have also that relates to our diabetes world.  When you ‘preach’ to those who know, stress without a shadow-of-doubt that you are ‘preaching’ to them to do more than merely read message…..but to pass the message on to others; and as best they can.

In community sites, community FB pages, school FB pages, other areas that do not have the word diabetes in it.  Get to those sites with your message.  Download a hundred posters and give them to the boy/girl scouts and or school groups to hang in a community.

It’s important to be in touch with each other, but when it comes to the education of things we already know, let’s work to reach those who do not.  Talking amongst ourselves is usually a good thing…..but educating others is about as powerful-a-gesture as you can/will ever make.  One person hears something they do not know, you-just-might-save-a-life.  Take an action-step today…….it will make you feel good.

I am a DiabetesDad.

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

 

Missed Diagnosed Adult—–Just One Incredible Story!!!!

missed targetYesterday I discussed the missed-diagnosis of diabetes in adults and many were willing to share their stories.  The one I share with you today really stuck in my mind.  I share it as I received it with the exception, in fair disclosure, that there was medication mentioned and I deleted the type/name and indicated such in the article.  I did that because I did not want the discussion to become about the medication, although it’s important.  I thank this reader (and all others) for sharing their story.

Hello, my husband had gotten ill in October ’12. He was complaining about his kidneys hurting/lower back pain.

He went to the dr that morning, they took blood and just send him home. Said they would call later in the week when they have blood test back.

Well, we have a T1D already in our household. We had an extra “sugar shack” (blood glucose meter) at home and checked his sugar, because we both had a feeling that might be what’s causing the pain. We were right on. His bg was 425. Off we were to the ER. There, they hooked him up to a insulin drop and dxed him with T2D. No tests were done nothing. Next morning the dr put him on (a type 2 medication–name/type removed by the editor). He dropped a couple of times which he helped himself since the nurses didn’t think it was important to check on their patient.

When we got home he got sick from the medication (name deleted by the editor). Trembling, shaking, dizzy, short of breath and what not. So instead of taking two big (name deleted by the editor) pills, he only took one.

He went to see a dr, who now is considered a diabetic consultant, who again didn’t do no further testing, but just kept telling him that’s normal.   My husband dropped 40lbs. He was skin and bones. We were scared to death.

Somebody at his work mentioned a “real” diabetes dr in the next bigger town. So off we go…
My husband walked in and the dr said “No wonder you are dropping all that weight and feel bad, you are a T1D, not T2D. I am 99% sure!” He ordered a blood test and voilà… He was right! I was furious!!!!! I could have easily lost my husband, the father of my babies.

Oh… And the nurse from his very first visit to the dr, called 3 days later and said “Your husband needs to go to the ER asap. He has diabetes!” If we would have waited 3 days for an answer he would have probably been in dka. Ugh!!!!!

Dr offices NEED a glucose meter in the office. One little finger prick can save lives.

This story is as scary as any other I have read.  The sad part in all of the stories, including children, is the thought of how much is not documented or known.  How many have become so ill and we will never know.  This scares me……does it scare you?

I am a DiabetesDad.

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

 

Missed DX of Diabetes……Adults, Would Love to Hear from YOU!

BombSometimes, when our focus is on something specific, we tend to have tunnel-vision for that one aspect.  Not necessarily a bad thing, but I always have tried to stay open-minded to see outside the specificity of what has my focus.  And recently, as I approach the various means to get the word out about the missed diagnosis in people (mostly children) being diagnosed with type one diabetes, there is another aspect to this mission that needs to be talked about as well.  And equally as dangerous.

Dr. M. Regina Castro defines LADA in this way: Latent autoimmune diabetes in adults (LADA) is a slow progressing form of autoimmune diabetes. Like type 1 diabetes, LADA occurs because your pancreas stops producing adequate insulin, most likely from some “insult” that slowly damages the insulin-producing cells in the pancreas. But unlike type 1 diabetes, with LADA, you often won’t need insulin for several months up to years after you’ve been diagnosed.

Some have stated it falls between type 1 and type 2 diabetes calling it type 1.5.  Personally, knowing what I do about T1D, I find little difference in LADA and T1D; you end up in the same place and many will tell you that looking back when their child was diagnosed, they probably had it for some time before the lack of insulin being produce started causing symptoms.

My point is not to discuss the differences between T1 and LADA but to ask how many adults have seen a medical professional, and because they are adults, were told they have T2 Diabetes.  If it is a slower pathway from the time it starts until symptoms show (and continue) it must be an occurrence where adults see their professional at an early stage because they feel something is wrong, and they are diagnosed with T2 when it is LADA.  Which means the treatment they are given……is wrong.  That’s just as dangerous as having flu/virus, like symptoms, being seen, and being sent home.

How long before the treatment of T2 misdiagnosed, takes a toll because it is actually T1D, or LADA as the case may be?

Could not DKA be the same result?  So today I seek input from all.  Clearly more and more adults are being diagnosed with T1D.  Hence why the words juvenile diabetes are now changed to type one.  If you are an adult with T1 or LADA and you were misdiagnosed, could you please share a little bit on what happened in your life.

In our diabetes world; misdiagnosed is misdiagnosed.  Young adults or adults seeing their doctor with a blood sugar of 212 could easily be told, “Well you have type two diabetes”.  But the pancreas is shutting down and two weeks later that same person could have a blood sugar of over 500 because it’s not T2D but they keep telling themselves, “well the doctor said I had diabetes”, not knowing it isn’t T2D at all and they too have become a ticking time bomb……..THAT scares the hell out of me.

So please let us know YOUR story.

I am a DiabetesDad.

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

Get Your Child’s Life Back to Normal……..Yours Will Follow.

NormalSure, I get it; after diagnosis our lives are never normal again.  How could they be?  This is an incredibly taxing disease, on us, our family, and most of all on our child newly diagnosed.  It was in the middle of the thought process on how horrible our lives had become, and would continue; on September 26th, 1992 when I had the realization that this would just not do.

Now clearly the majority of this challenge fell squarely on Jill’s shoulders to achieve, it was something we agreed upon.  Once we decided that I would work the two jobs to try to make sure everything was not lost financially, Jill became the ‘keeper of Kaitlyn’s life’.  But together we learned, and shared.  But never to think otherwise,  and I have said it many times before, Jill did the day-to-day with Kaitlyn and she is the luckiest girl on earth to have the mom she has.

Was it too early to start this at the age of two, Kaitlyn’s age upon diagnosis?  We thought not.  Did we cry?  Yup and a lot (but she never saw).  But our energy was razor-focused on making sure we knew all we could and spent numerous hours finding out about this disease.  I have said it a million time, knowledge is power, it is the equalizer in this diabetes world.

That power would be reflected in Kaitlyn’s life.  That power would be to rely on no one’s word but our own knowledge….NOTHING was taken at face value….we found out for ourselves.  We asked a million questions,  We made a million phone calls.  We spoke to a million people.  Everything learned went into ‘the educational hopper of our mind’ and out came a course of action.

We decided that diabetes would stop Kaitlyn…..from nothing, and when Rob was diagnosed (our youngest of our three children) at age 13 in 2009, that same philosophy was now a part of life.  It took a lot of work.  It took a lot of education.  There was no daily FB chat with families going through what we went through–it did not yet exist to the extent it does now; we had to go and find it….and we did.

In today’s world my only warning is just because you see it in an instant means of our present online world….NEVER take it as gospel truth.  Great place to start but remember that because it works with one person, does not mean it will work with your child.  Your source of action is up to you.  Ask….ask….ask….run it by your professional medical team….and go ask….ask…ask again.  Decide.  The course of this journey is up to you.

To be honest with you, our worrying was out-paced by our thirst for knowledge. There is the Children with Diabetes Friends for Life Conference every year, there are camps, there are support groups……..we did not choose one……we did them all.  We did not support one organization over another, we supported as many as we could in any way.  If not financially, we volunteered our time.  Great people are involved all over and we wanted to be near as many as we could who had more knowledge than us.   It taught us that this now-no-longer-normal could be much closer to normal than we ever thought.  Right up to the time Kaitlyn came home from school and stated “I’m thinking I want to try cross-country”.  Really?

If she wanted to try something, be something, or do something; it WAS OUR JOB to make sure she could………………….whatever it took.  And we did.  Was she ‘all state’? No.  But she would not have been ‘all state’ if she didn’t have diabetes ether…..and THAT is the point.  She did what her abilities allowed.  Class officer, lettered in a sport of her choosing (just because she wanted to), Homecoming Court, Prom Court, Scholarships, this club, that club, this event, this trip, sleepover, whatever………because SHE wanted this…….she got it.  And ‘she-sure-did’; she did it all while managing her diabetes.

Add to this mix is that it was a much ‘different diabetes’ when she was first diagnosed.  Insulin pumps, CGMs, smaller syringes, pens……..nope……none of it in every day use like today

That did not make this job easy, just easier than when we started.  It still comes down to you.  What part of this disease is acceptable to you?  If it’s none of it; than do all you can to get back to where life was.  Know that it will NEVER get back exactly the way it was but if you spend more of your life TRYING to achieve that than completely being swallowed up in the grief on the lost childhood you think you now have; your child will be better off.

Kaitlyn graduated Nursing School less than a month ago, she prepares for her exam as we speak; Rob works full-time and goes to school full-time and last night he spent hours making some-sort of crazy buffalo-chicken-type-pizza from scratch.  That, my dear friends, is what I call as close to normal as it could ever be…….that is all we ever wanted.

One final word, we also were/are VERY well aware that at any given moment his disease could completely destroy a life.  The way we handled that thought was, yes, that COULD happen and it would be absolutely devastating.  But I decided that should fate EVER throw that in our path, I damn-well better be able to look myself in the mirror and know THAT I DID all I could to stop it.  If I needed to work harder—I did.  That simple.  You can listen to naysayers or you can chart YOUR course.  Never once did I say it would be easy………but I learned a long time ago……the harder you work at something, the ‘luckier’ you will be…….after that; it’s up to Whomever you believe in.  This has served us well for over 23 years, I hope it helps you just a little.  Something to be said, ‘with experience’.

I am a DiabetesDad.

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

 

The Voices of Children who have Died from a Missed Diagnosis of T1d

DKA kidsIn the box below are the voices of those who have died from the missed diagnosis of type 1 diabetes.Square
Truth is……They don’t have one………will you give them yours?
  Don’t do nothing.
Get involved….don’t know what to do??????………ask!

I am a DiabetesDad.

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

NEWSBREAK Report: T1D in Children Rising; and a Woman You NEED to follow “Closely”.

Going upKelly Close’s DiaTribe published a very interesting finding based on a recent study in Diabetes Care……it states (according to DiaTribe);
“……..more US children and adolescents have been diagnosed with type 1 diabetes in recent years: the disease’s annual prevalence in a large, insured population increased 53% between 2002 and 2013, from 1.48 to 2.33 cases per 1,000 people. The study used data from insurance companies to survey the rate of diabetes in ~10 million US children and adolescents younger than 18 years old, so it does not tell us how diagnoses of type 1 may be changing in adults. It is not clear why type 1 diagnoses are increasing so rapidly.”

Now if you look at those stats a little more closely, it used to be that 1.48 cases per 1,000 were diagnosed with type 1 diabetes (T1D), and the new study shows that it is now 2.33.  Now in dealing with percentages, that means that almost an additional person per 1,000 cases is being diagnosed with T1D.  THAT’s alarming.

You can read Kelly’s full assessment/article by clicking here.

Click the link and read her article; pay close attention to her conclusion.  It will shake your cage and reinforce what many have stated for some time.  And if you do not follow her, you should.  Kelly has an incredible talent to call things as they are, usually with little sweetener (pun intended).

If you do not know Kelly, I can tell you that she is a shoot-from-the-hip kind of writer; and probably one of the most knowledgeable people on what is happening in our diabetes world.   Little, if anything, gets by her and/or her team.  She has taken her battle with diabetes (of over 25 years) and her desire to know every/any-thing she can, and after she ferociously learns for herself, she graciously shares with the world what she finds.

Kelly is also the same person who meets you with a warm smile (one of the biggest smiles I know) when you see her at one of the many conferences dealing with diabetes, taking place annually.  It’s not ‘unusual’ to see her and/or members of her team running from one session to another to capture, for us, what is going on.

Diabetes.  She writes about all aspects of diabetes.  ALL.  You may not agree with everything that is written, and truth be known, you shouldn’t.  I have often felt that if you want to be amused, you read the comics; if you want to learn, read writers who challenge you to think and to learn for yourself.  Writers should open a dialogue; and Kelly is the master.

So if you are always trying to figure out what is real and what is not; what are facts and what is rhetoric; what is the truth and what is mere fabrication….give yourself a New Year’s gift and follow Kelly’s DiaTribe more closely.  In a few months you will feel more educated, and in the know, about what so many merely think they know.

I am a diabetes dad.

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

 

 

A Message for You!!!!

Happy New Year 2016A really good friend wished me a happy New Year and stated that the hope was that all my wishes would come true in 2016.

Interesting concept.

I found myself asking if I had ‘all my desires’ as a bucketful of wishes or is my wish the same as it was on September 26th, 1992, and only to be doubled on March 20th, 2009.  The same wish every time I blow out my birthday candles.  The same wish anytime I wish upon a star.  The same wish I have every time I break a wish bone.  The same wish in my nightly prayers.

A cure, for my two children.

It’s a promise I gave my kids and it’s the foundation for everything I do.  I’m deeply involved in this diabetes world.  I wish I was not, but I am during almost every minute of every day in some shape or form.  I’m energized by this diabetes world around us.  And in as much as I believe in the efforts of the Diabetes Research Institute, being involved as I am, also allows me the privilege of seeing so many wonderful things out there which I see with an open mind with a drive to learn more.

I see what I see, through your eyes as well.

I thank you for that.  You teach me so much.  You have opened my eyes to so many worlds of research, initiatives, efforts, education, management tools and energy to make this diabetes world palatable that I, otherwise, would not have in my life.  Your energy drives me.  Your knowledge challenges me.  Your passion humbles me.

Thank you for allowing me to share in your life.  We are in this together and our one and only competition must always be; diabetes.  To make a difference in this diabetes world and to just ‘not do nothing’.

I wish all of you the best 2016, and may it take you one step closer to whatever it is you seek in your life; for you, for your family, and for those you love.

Happy New Year!

Much love, respect, and admiration always,
Tom

I am a diabetes dad.

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

 

Tyson’s Family Shares a Story on Saving a Life……..Are you ANGRY ENOUGH…….to Help?

Tyson IrbyAs this year ends, I am still driven by how far this year has taken us in the battle against missing the diagnosis of T1D and the diagnosis while in DKA.  It’s a battle that can be won.  And THAT battle is a series of wars in every state.

What can you do?  I believe this battle can be fought on many fronts and with many, many, willing and eager participants.  If I start to list them, I will miss some and I DO NOT want to do that, but know they are out there.  They are out there advocating, spreading the word, and creating resources for others to use.  The question remains and will always remain, what will YOU do about it?

Now to be clear, if your plate is full and you have the initiatives you find important in this diabetes battle have ‘filled’ your plate ; fine.  Thank you for not doing nothing.  But if you are still looking for something to do; you have many approaches from which to choose to help solve this problem.  One approach is meeting with your legislator for possible action in the form of a law regarding this issue.  There will be some more tools about this upcoming and there are many out there already.   It’s a powerful means to try to make sure that no one else passes away from undiagnosed T1D ever again.  It will take time, like it took us time in North Carolina.  And it may only be a step, but any step is a good step to build upon.

Another approach is now.  Right Now.  There are many means to download posters and spread the word in any community.  Others have shared theirs (if you have any, please share as a reply to this post on this page so all have the information from which to choose) and I have discussed many times what is available at www.getdiabetesright.org that Kim May (a dMom) and I have made available.  But there can never be too many reminders

I have also shared a REALLY POWERFUL note that can be sent home from school nurses created by the National Association of School Nurses.  This has been sent out to 33,000 people in their data base……but we can help.   I wrote about it and you can read about it and download it here.    Enlist school groups for community service.  Boy Scouts, Girl Scouts, After-School service groups, Chamber of Commerce—-create an army to distribute the letters and/or posters which can be hung anywhere; and you can do it with little money (cost of poster to be copied), or have someone with a printer donate a hundred for you to distribute.

People are discussing many things on a larger scale from PSA’s to other initiatives; these are all good—-in fact they are better than good, they are GREAT.  Many will take some time.  But one person, can do something or start something now.

Tyson Irby recently lost his battle by not being diagnosed.   I have been in touch with Tyson’s Family and this was shared with me last night;
We heard a story today of a mother, who heard Tyson’s story,  that took her daughter in because she was going to the bathroom more than normal. Her sugar level was 600, and she is type one. Maybe Tyson’s story saved her life.

Maybe?  I think not…..I think absolutely.   Reegan’s family has shared the same stories. So has Kycie’s Family.  The word WILL IMPACT.  This is a one-story initiative.  One tells two, tells four, tells eight, and on and on and on.  While the BIG STUFF is all being worked on, let’s learn from Tyson’s Family , Reegan’s Family and others——GET THE WORD OUT THERE however it takes.  While the BIG STUFF is being worded on, the poster seen, the letter from the nurses office received CAN AND WILL change a life.

Much has been done, much will be done, BUT MUCH CAN BE DONE NOW.  Have you ever heard those commercials that end with a line that states something like, “…..someone’s life may depend on it” ?  In this initiative, that statement is absolutely true.

Please, for the new year, just “Don’t do Nothing, someone’s life may depend on it.”

I am a diabetes dad.

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

 

Bye-Bye Bayer

BayerHaving two kids living with diabetes means I’m…..well the father of two children living with diabetes.  As such, all sorts of things come to our house, mostly via the US Mail.

We received a notice the other day that stated;
Bayer AG (“Bayer”) is pleased to announce that it intends to sell its diabetes care business to Panasonic Healthcare Holdings Co., Ltd. (Panasonic). a company which is backed by funds……blah…..blah…..blah….blah.
Panasonic will operate the Diabetes Care Business under the new name of Ascensia Diabetes Care……
There is also a highlighted blue box that states our information will be given over to Ascensia……and also information where to find press releases and further information….blah….blah……blah.

The sale of the company was for 1.13 billion dollars according to a June Wall Street Journal report.

June—–either I am late to the party or this got by me somehow, but I just received the letter this week (and I know others have written about this already).  Is this a good thing.  Does Bayer still care about us?  Will Panasonic?  Does anyone?  They are “pleased to announce……”…….are we?

I’m not a big fan of change, I also understand that Budweiser no longer owns Budweiser; meaning that I get that in the corporate world mergers and acquisitions are as natural as the sun rising and the sun setting.  But I also know that when we entered the diabetes world, our lives became unglued.  One would have thought that there was some consistency with the corporate world surrounding the so many who need care; medical care…….right?

But when so many things get tilted, changed and thrown around……whether Asante Snap closes their doors, certain insulins will no longer be made, or even Bayer will cease being……well Bayer…….does anyone else ask……where are we in the mix?  We being the people who either have or have loved ones with this disease…….where are we?

We are set adrift to find what we need to find to stay alive…….and we will.  I bet if we wanted something from a company…..and we all got together and said we will buy your product no more unless you listen……..they would take notice……….or not; they could easily just sell off that division so they did not have to hear anymore can’t they?

I think we should be, and need to be, more of a partner in this diabetes battle with diabetes companies and not merely ‘users of products’……..yes?

I am a diabetes dad.

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

 

Our Diabetes World NEEDS a Smokey the Bear……..any Takers??????

Smokey the BearThere is this commercial presently running on television in the United States.  It’s a commercial warning that your child could be at a very high risk of a fatal disease by merely casual contact of their peers.  At first I thought it was a fairly decent commercial warning of a potential hazard.

Of course it was more.  It was actually a commercial to get you to have your child vaccinated with their drug.  There are other commercials out there like this.  Many have to do with flu shots as well.

This got me to thinking.  There are many other commercials created for the only reason……..they are needed.

Many great PSA (Public Service Announcements) commercials are actually products of the Ad Council.  The Ad Council, by their own mission statement; Identifies a select number of significant public issues and stimulate action on those issues through communication programs that make a measurable difference in our society.

Hundreds of Ad Agencies, Sponsors, Media Partners, Corporations all have joined forces and have been responsible for some of the greatest campaigns…….well…..EVER.  Their longest running campaign, lasting over 70 years, has been those surrounding Smokey the Bear.  Worldwide has been their success on relaying the truthful impact that “Only You, Can Prevent Forest Fires.”  Simple.  Hugely effective.  Fun.  A message worth gold.

There have been so many initiatives within our community of late.  Issues of importance that need public awareness.  Imagine if there was an Ad Council for our diabetes world?  If all the companies gave one or two individuals, along with a few other advocates, and joined together and became the ‘think-tank’ for messaging on issues pertaining to diabetes.

Once a year we would meet at….let’s say……the ADA Annual Scientific meeting……and decide two or three messages and an ad campaign would be created.  Maybe even create one PSA annually to benefit T1D, one to benefit T2D, and one generic for whatever else is needed.  Let’s call ourselves The Diabetes Initiative for Ads to Better Enlighten, Teach, and Engage Society; or The D.I.A.B.E.T.E.S Council.

Surely there are enough companies to be involved that would make this extremely worth while.  And who would win?  The millions out there who have diabetes.
How cool would it be to see PSAs running and at the end a logo is show and the voiceover says; “The preceding was made possible through the D.I.A.B.E.T.E.S. Council”?

Send this article to someone in a leadership position at a company you know.  Tell  them to reach out to me and we will get the wheels moving.  Anything good begins with just an idea……any takers?

I am a diabetes dad.

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