Death from Diabetes……A Small Glimmering Light has Arrived

By far, this is the hardest thing that I have been involved both in and with; on our diabetes journey and within our diabetes community.  It is hard.  It is sad.  It is reality.  And quite truthfully it just sucks.

The number one thing that occurs when someone dies in our diabetes community, is the loss of what to do when it happens.  What can we do to help?, is asked over and over again.  What to do, what is right, how to help.  Now there is something with true substance that we can all do when someone passes away.  And unfortunately, it will happen again.  My picture today is the blue candle, but I have added a glimmering light, small as it is, because it is a light that many families will need at their most difficult time, that may now be there to help.  Somewhere to turn when so all alone.

Today is National Bereavement Day and Beyond Type 1 has ONCE AGAIN stepped up, to help our community. I believe that Beyond Type 1 (BT1) is truly one of the most remarkable organizations in existence.  What no one touches…..they hit head on.  Listening to Sarah Lucas, Thom Scher, and/or anyone at BT1 when they discuss diabetes topics, you feel their passion–it becomes tangible; their actions are a force, their actions are quick, their actions have substance.

Today, this wonderful organization has partnered with one of the people I respect most in this battle, Michelle Page Alswager.  Michelle lost her precious Jesse at age 13.  Others may just give in and give up, and truthfully, no one in the world would ever blame them.  Michelle has taken her grief and reached out to help as only someone who has experienced this pain can…….she has made it a rallying cry to help others.  She has been an advocate for years to those who lost someone and, as is their custom (missed diagnosis, Tu Diabetes etc), Beyond Type 1 has stepped in to fill a void, and if you know BT1, you also know they do nothing halfway…….this is no exception.

Jesse Was Here
From their new website page:
Launching August 30, 2018, Jesse Was Here was inspired by Michelle Page-Alswager’s experience after the sudden death of her 13-year-old son, Jesse, from Type 1 diabetes. Grieving the loss of her child, and the potential loss of the diabetes community, she created an online community to support parents who had also lost their children to Type 1 diabetes. By connecting with others who shared her experience, she realized many of those seeking support and opportunities to honor their loved ones, also struggle with unexpected funeral expenses, ongoing medical bills and sometimes even the funds for a headstone. Through her efforts, she discovered many others — not just parents of young children — were looking for peer support, practical information, coping tools and financial assistance. Working together, Michelle and the team at Beyond Type 1 are creating a very special program to serve this unique and deserving community.

Keep this as a resource because, the painful reality, it will be needed.  While you’re at it, give a few bucks to them as well because in reality, they can only help with what they have.  If you have ever asked, How can I help that family?—-now is your chance.

Truthfully, I hated writing this article today because it just reminded me of just so much pain I have seen others go through over the years.  But it is comforting to know that people like Michelle are not afraid to walk-the-walk, and organizations like
Beyond Type 1 are not afraid to listen, and step up.

It is what makes being part of the club none of us wanted to join; a little more bearable.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Diabetes Disaster Response Coalition is Activated—Hurricane Lane

The Diabetes Disaster Response Coalition was created after years and years of people wanting to do something, AND DOING SOMETHING, but without a cohesive effort so the entire diabetes community knows what to do in the time of disaster.  This is the only time I will speak in general terms about this group…..moving forward, when you see the logo, it will be an indication that there is an update as this column will be turned over for information about a particular disaster.

During times when you want to help, go to the Diabetes Disaster Response Coalition FB page for up to the minute information on how to help.  There is a great body of people involved on this Coalition co-chaired by Carol Atkinson (Insulin for Life/USA) and Kelly Mueller (American Diabetes Association) because that makes sense.  There is a lot of things making sense with this group.  At some point I will fill you in on who is involved but let’s get right to the nitty-gritty with information on what to pass along to your family and friends in Hawaii who might have diabetes concerns.

The most important information is what YOU NEED to do to be prepared to handle your (or a loved one’s) diabetes care during the upcoming storm:
CLICK THIS LINK FOR PATIENT PREPAREDNESS

1. Documentation. Write down type of diabetes you have, other medical conditions, allergies, and previous surgeries. Include current medications, doses, and time you take them along with your pharmacy name, address and phone number.

* Prescriptions. Ask for an extra supply of all medications, including insulin and Glucagon, if prescribed. During an emergency, you are eligible for an emergency override. Call your pharmacy, if they say no, contact your healthcare provider for an altered prescription. Warning: Insurance may not pay for the increased amounts.

2. Insulin. If you lose power and you have unused insulin, don’t throw it out! In an emergency, it is okay to use expired or non-refrigerated insulin. 3. Shelters. A live map of open shelters from the American Red Cross can be found here. You can also contact the American Red Cross directly at 1-800-RED-CROSS. If you find yourself in a shelter without proper diabetes care and supplies, call 1-800-DIABETES.

4. Statewide Updates. Emergency updates and other resources can be found here. Hawaii Emergency Management Agency. http://dod.hawaii.gov/hiema/

The Diabetes Disaster Response Coalition FB will be updated as needed.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

CGMs Upon Diagnosis Moving Forward? Thoughts?

I’m sure there was a time when people were dealing with their diabetes; and were used to peeing in a cup, boiling water, dropping in tablets to match a color chart, and check the color of urine to see how much insulin was needed, they were content with the procedure because it was really the only choice. You did it this way because that is the way it was.  And along came a study that showed close control of blood sugars could help enhance the life style of those with diabetes and even prolong lives.

What happened?

Well the pharmaceutical business EXPLODED with devices and treatments never seen before in our diabetes world.  What was a 30 minute process, minimum, was now being done in 30 seconds…….but there was a catch.  The individual needed to harpoon themselves 4-8 times daily to produce a drop of blood used to measure the glucose when applied to a strip attached to a meter.  That was the tradeoff.  It was better and faster but to the individual, was it ‘better’ to stab oneself in the exchange of faster and more accuracy?  That is the way it was.

You see if you have been around in this diabetes world twenty years or less, you really do not know anything else but glucometers as THE DEVICE to use.  You became used to ‘harpooning’ yourself because that was the way of the world and you were taught nothing different.

What happened?

An all-out war broke out in the pharmaceutical world to be the fastest meter, the most compact meter, and the most accurate meter.  And work began to improve upon ‘the norm’; to make it so no blood drop was even needed.   A way or a means to check one’s glucose constantly and on a device where the information was sent electronically, constantly……..like predecessor management tools, it seemed like a dream come true.   But it happened and the continuous glucose monitor (CGM) is now a part of our every day life……..for some.

“I do not want to wear something all of the time?”
“I’d rather do it the old-fashioned way with a meter.”
“Being attached does not seem right to me.”
And if you did not always use a CGM……that is your call.

But we bought up a generation of kids who knew nothing else when it came to harpooning themselves to obtain that drop of blood…..it almost seems archaic, doesn’t it?  But they surely accepted it as ‘the norm’.  It’s time to bring up a new generation of kids.  Kids who know nothing else but wearing a CGM………because it makes sense.   The glucometers are becoming less and less and more people are on a CGM than ever before.  Sure we need glucometers, but now they are mostly a back up.

It makes sense that there is something that can alarm when you are low and warn you.  It makes sense to have a management tool almost the time you are diagnosed that can help prevent those swings from low to high and back low again that leaves the person with diabetes feeling like that they are in a spiral in all sorts of directions.  It makes sense to wear something that checks one’s blood sugar constantly.   I’m sure when the choice was to pee in a cup instead of harpooning yourself, it seemed likely to stay with the old way, it was easier………but we now know it was NOT better.  Was it?

It’s time to once again challenge ourselves with something better and not necessarily easier. A CGM should be given as soon as a diagnosis occurs.  We need to ask those questions once again?  From the moment one is diagnosed.

What do you think?

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

NEWSBREAK: CMS Says Yes to the Dexcom……WOW!

Dexcom G5In case you were distracted at the end of last week, a major development took place at CMS (Center for Medicare & Medicaid Services) when the decision was made and the agency stated that the Dexcom G5 Mobile was now determined to be classified in a benefit category as therapeutic; thus allowing the agency to cover the device for those people on Medicare or Medicaid.

HUGE!

Dexcom should be applauded for their tireless efforts in this area fighting for the approval of the device.  I get it, their stock soared upon the approval and hence, it could be said it was why they battled.  Dexcom is a business.  And in the world of diabetes, businesses that are run correctly, deserve whatever they are allowed.

Kevin Sayer, President and CEO, has run his Dexcom Company with diligence, integrity, they give back to the community, and if they benefit for fighting so hard so everyone wanting their CGM, even those on social services and not on commercial insurance, can get one…..more power to them.  Not to mention those turning 65 will now no longer lose their coverage for a CGM for merely getting older.

It’s no wonder that Dexcom seems to constantly show the business world of diabetes why their business objectives and business platform are second to none.  The diabetes community can only hope others take note and follow their lead.

You can read Dexcom’s press release by clicking here.

Bravo Dexcom…….Bravo!
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’

Diabetes Awareness Month…..Is the Outside World Learning Anything?

Blue squareNovember is Diabetes Awareness Month and the 14th is designated as Word Diabetes Day.  It’s my understanding that the American Diabetes Association designated one and the International Diabetes Federation designated the other…..and it was so declared.

I think.

Now I love ‘branding’.  I love that I know what Nike means, what Polo means, and what the golden arches of McDonalds mean.  One brand means one thing.  As a diabetes community, have we missed the mark in this regard?  I mean what is the one message we want to get out in November.  In branding, you establish something that is instantly recognizable to the general public and you work hard (and sometimes billions of dollars) to ‘make that brand work’.

Remember the ice bucket challenge.  After that, everyone ran around searching for, and trying to be, ‘the next’ ice bucket challenge.  Never quite understood that because the major organizations ALL HAVE MARQUEE fundraising events that raise hundreds of millions dollars each and every year…..they already are ‘the next thing’.  A ‘next’ anything, for them, does not need to be created…….they have one already in walks and rides.  Build upon what you have.

Now I’m surely for the notion that everyone wants to ‘get involved’ and do their own thing.  But I also know that we, as a community, are constantly reflecting upon the fact that there are so many identity problems in the world of diabetes.  And during this month so many people are trying, and/or, doing their own thing that I ask, “Is the world at-large hearing or seeing one concise messaging?”  In the attempt for so many to ‘improve’ upon a blue color, or get a message out, or be the ‘cute’ new thing about diabetes that there is SO MUCH going on, the public is not hearing any message at all?

If you try to be everything to everyone, you usually end up nothing to anyone.  I have been thinking about this for a while and I have an idea.

The IDF conference, next month, is in Vancouver.  November, as diabetes month, is a full 30 days in length.  Why is there not a meeting among the tri-powerful JDRF, ADA, and the IDF; but every other organization is invited also.   In actuality, would it be wrong to have/create a diabetes council?  One representative of every organization and everyone meets at the IDF Conference and the ADA conference—twice a year.  And at this meeting, every organization is equal.

Actually this can be good for a lot of reasons but one focus could be……what is the single message needed to get out the following November?  The first half of the meeting a discussion is held and ideas are thrown about what the message would be for diabetes Awareness Month.  The list is whittled down to a few single messages, and a vote is taken and the one single message is decided.  After November, everyone can go back to doing their own thing but for one month, one message.

And that’s it.

Because the resources of the JDRF, ADA, and IDF are bigger than, well probably everyone else, they accept the challenge (on a rotation basis) to come up with that year’s creative (the design) but there are also some pretty creative people in our community and perhaps they can be asked to be part of the design team because after all, it will belong to all of us in the community.  The  message is generic, but here is the thing, there is a space for ALL ORGANIZATIONS to brand it themselves.  No matter how big or how small the organization, you can add your logo, your website, and/or your phone number to the art design with the generic message.

Now for thirty days straight, the message is the same.  The exact same. Unified. Everyone has been part of the process.  But the world-at-large is now seeing the ONE MESSAGE about diabetes that has been agreed upon by the entire diabetes community for that year.

Why try it?

Well, we all have been doing our own thing for so long, and I’m unsure what impact there really has been over the years for THE OUTSIDE WORLD to understand this disease; perhaps trying something else and working toward a unified message……well maybe that time has come……what do you think?

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

A MOM: I Will Never Get This RIGHT!!!!!!!

Pulling hair outI have often found myself reflecting back to the days when Kaitlyn was very, very young and we began this journey.  Do you ever reflect back?

If you are fairly new at this ‘diabetes thing’, it may seem like such a long haul ahead of you but let me share that you should look back constantly on how far you have come because you will proceed very quickly……..because you must.  I often hear parents say how much of a failure they feel at ‘doing this diabetes thing’.

No one woke up one day and said, “Okay, not only do I want to be an Olympic Runner, but I will run a race today.”  Absurd, right?

But on one day life was normal and the next, BANG….Olympic Marathon…….now GO!  You were not trained for this; you did not plan this; you could never be ready for a life after diagnosis.  And yet, here you are.

So before you beat yourself up, remember how far you have come since…..well….just yesterday.  Or since last week.  Or since last year.  At that time, the time your child was diagnosed, you KNEW NOTHING about diabetes.  And in a short time you have become an expert on so many things.

Remember this about experts, there is not a medical professional alive that does not need to do something every year to gain continuing education credits to keep their license renewed for their practice.  So every year medical professionals attend lectures, meetings, and conferences continuing their knowledge base in a field that they spent years to learn……and yet each year or two, they need to do more.

There is no continuing education credit when you have a child……it’s called being a parent.  It is a process we must work out continually.  And having a child diagnosed with diabetes…..the education never stops, nor should it.  So do not be so hard on yourself.  Remember that you are involved in something that you would never have signed up for, you had no choice and neither did your child.

Remember when you thought, I could never prick their finger to check their blood…..that could hurt them?   You have come a long way baby…….hang in there.  You know more than you think you do!  Your child is lucky to have you.

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

Every One of these Magical Dancers has T1D…….and that Was Not The Only Magic. WOW!!!!!!!

Dancing girlsEveryone of these young ladies, dancing their hearts out, have type 1 diabetes.  Dancing for Diabetes has that kind of magic that made this entire evening one of the most memorable of all my World Diabetes Days in all my 22 years on this journey……understanding the nature of it, it was a hugely memorable evening all around.  The unsung heroes are both the behind- the-scenes people who orchestrated the night; and all those who arranged the choreography–brilliantly executed and thoroughly entertaining all.

To say this was ‘just’ an evening of dance would be like saying the Super Bowl is just another football game.  From hip-hop, to modern dance, to ballet to even a trip to Starbucks to see a hugely original dance to Kristen Chenoweth’s Taylor the Latte Boy; yes, this night had it all.  Even an incredible diabetes education segment at the top of Act II…..absolutely flawless.

Dancing for DIabetes LogoFifteen years ago a young tween-ager (at the time), but no less determined,  began Dancing for Diabetes in her driveway in her Florida home.  It was the brainchild of a talented dancer, Elizabeth Stein, who was diagnosed shortly before with T1D.

Not to let diabetes stop her in any way, IN ANY WAY, she began Dancing for Diabetes to help others know that they can do anything while managing their diabetes.  Indeed.  When you see the graceful Elizabeth on home-made videos, you realize just how magnificent and dedicated she was to her craft.  When you see her at work  in a Florida Law office, you see an educated and focused office manager. When you see her speak of Dancing with Diabetes, you see a business woman with a fierce dedication to make this project work outside the boarders of her Florida State.

Dancing girls endBut it is the softness, in this same woman’s eyes, when she speaks of the young dancers who are featured in the second act, all having diabetes.  ‘I remember what it was like to dance and manage this disease.  I know what they are going through.”   And she does.  When she is on one knee speaking to one of her dancers, she walks them through as they manage their diabetes.  An outsider (me), cannot help but ask which is bigger, her knowledge of making Dancing for Diabetes the sharpest, tightest, and most professional evening of dance ever created; or her heart that cares so much for her dancers (and there were hundreds of them) especial those who dance with insulin pumps and CGMs on their waists and attached to their arms.

Awe. Inspiring. Impressed.  And quite frankly a few tears as I remember another little girl who loved dancing a lifetime ago.  On this World Diabetes Day, I was taken back to a little girl who with her diabetes, wanted to dance as well….and dance she did.  Diabetes did not stop her then, and at twenty-five it has not stopped her yet.

In my seat of hundreds of people, I was alone; as tears filled my eyes watching this evening unfold.  This one incredible evening unfold.

Dancing for Diabetes is a nonprofit organization and the Diabetes Research Institute will receive the proceeds from this year’s event.  Elizabeth has an army of friends and family who help her and this is one professionally run evening right down with signs on where to park outside the building.   As I spoke to the sponsors and special guests at the reception following, I said that Dancing with Diabetes should be, no NEEDS to be, in every State of our great country—-and beyond.   Turns out that is Elizabeth’s exact plan.

So if you have a love for dance, or your child does, and you want to learn more about Dancing for Diabetes; send me an email at tkarlya@drif.org (write Dancing in the subject line) and I will have Elizabeth get back to you.  It takes some work, but it is a fantastic evening and everyone should share in it.

Dancing for diabetes Elizabeth Head shotIt was a World Diabetes Day to remember and for Elizabeth, by evening’s end, it would be even more-so as her boy friend dropped to one knee and asked her to marry him.   She said yes.

Take THAT diabetes.

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

Diabetes Awareness Day I Created Something You Can Share to People Without Diabetes

Star. CupSo here is something you can share with those people who do not have diabetes.  A simple cup…….with a message. It just seemed to me that instead of it being a controversy, it could be used for a simple message…..a message that could save the life of someone you know and love.   It’s ‘interesting enough’ that local newspaper and media outlets may share it also….share it with them.  Share this with other sites, any sites.  Place this on all social media.  Anywhere where people who know nothing about diabetes may see it.

GDR Warning jpg

If you received this post….kindly click the flyer above and print it out.  Hang it somewhere where people will see it.  Sometimes, at the onset, type 1 diabetes can seem like a flu/or virus; but it’s not.  If someone you know has the signs above, ask your doctor to test for type 1 diabetes immediately.

So if today is about getting a message out……this just may be a way to capture those who know nothing about diabetes, the message is surely there.

Have a GREAT November 14th.

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

Tomorrow is November 14th; Nothing Tops the Reason We Started…….and Nothing Ever Will.

Kaitlyn FlowerI’m all in favor of everything that will happen tomorrow, and for that matter, all this month regarding diabetes.  Happy Birthday tomorrow, Dr. Banting and thank you for creating insulin; it–more than anything else ever discovered, created, invented, researched, and/or implemented is still the single-best finding EVER in the world of diabetes…..and everything else pales in comparison.

But we surely are glad that everything else that has come along and will continue to come along on this journey……aren’t we?

I always find myself thinking many things during this month.  My thoughts come down to one thing each and every year during this month.  Why I got involved in the first place.  And that reason is still a little girl who asked me, in crib/bed at the hospital in 1992 when she said, ‘Daddy, fix.”

No matter what has happened in this journey, it all comes down to her.  And in 2009 her brother was added to that drive.  Two of my three kids having diabetes.  It’s still my single focus and all that matters to me at the end of the day.  It’s why I try not to get caught up in ‘stuff’ that does not interest me.  What interests me is helping others and seeing that one day this disease is cured.  For Kaitlyn.  For Rob.   For others.

Cured.

Nothing short of that is acceptable in my eyes.  Many things that come along are appreciated but I’m always reminded of the headline when insulin was discovered which stated that it had been cured……..hmmmmmm?…..greatly helped……but not cured.

I have a definition of cured in my mind, and you have what that means to you as well.  We may differ how we will get there.  We may differ on who, or what, will lead the way.  We may differ on what ‘word’ we want to get out to the masses.  We may differ what symbol and/or color should be used to represent us all.  We may differ on who has written what, and how we sometimes want to hug the person, and sometimes we may even want to punch them in the nose.  We may differ on organizations.  We may differ on the emphasis of what is important.

I have said it a million times, just ‘Don’t do Nothing’.  And yet, over the years people have informed me that all they choose to do is take care of what they need to and I have learned we may differ in that thought too.

But at the end of the day;  when we crawl into bed, sign that last letter, post that last comment, give that last dollar, undo that last black-tie, tie that last sneaker, pedal that last bike we need to stop and we should look upon the face that started it all for us.  No we do not need a reminder how we got involved, we will always remember the reason.  But as the thirteenth of November turns into the fourteenth of November, look upon the face of the one who got you here.  Either as they sleep, or by looking at a picture.

And say to yourself yet again: Nothing matters as much.

For me, nothing ever did matter more……and nothing ever will.  Keep that thought and realize just how wonderful you are…….and multiply that by a hundred to realize just how wonderful and special your kids are as well.  And how much their siblings and other relatives and friends have been there to help.

And remember this……..no matter WHAT has happened to you in this journey, that face still stands as the single most reason to continue what ever it is that you do. That is Diabetes Awareness Day to me; always has been….always will be….and it happens every day.   You?

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

HEADLINE: Diabetes Caught Twerking in NYC Night Club

twerkI have always found it fascinating how Realty Show Stars and other celebrities capture the headlines.  You know that at least three names jumped into your head as soon as you read the first line of today’s article.

Interesting isn’t it?

There’s always so much discussion how little people know about diabetes.  How much more diabetes needs to be in the media.  “People just do not know about it.”  Yet celebrities and/or pseudo-celebrities CAPTURE the headlines with ridiculous feats of activity that just boggles the mind.  Perhaps we should have diabetes pull a few stunts to get into the headlines.

Ever notice how some major announcements by some of these people coincide with the opening of a movie, book, or television show……..trust me, it is NO accident.  It got me to wondering……..

“Diabetes parties all night with Kim and Justin in NYC Nightclub.”
“Diabetes……pregnant?  Seen wearing outfit with obvious baby bump.”
“Could diabetes be engaged…..seen sporting huge rock at sporting event.”
“Diabetes’ girlfriend DLo pregnant, and he could no be happier.”
“Diabetes twerks and sends text by accident to 12 million fans.”
“Diabetes in car accident….and pays off lady’s mortgage.”
“Diabetes gives outrageous interview on Tonight Show….jumps up on desk.”

See how it works?  Many people have been attributed with saying, I don’t care what the newspapers say as long as they spell my name correctly. (Mae West, PT Barnum, WC Fields and more).  So as long as it is outrageous, they will print it.

Hmmmmmmmmmmmmmm……….
Impacting millions
Costing billions
Causing heartaches
Costing Lives
Tearing apart families
None of that worthy of headlines………that what we have here?

I’m at a loss then.

Think I’ll check-in and see what Khloe is doing tonight??????????

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