If Diabetes was Personified, What would it LOOK LIKE…….to You?

darth vader IIDid you ever wonder what diabetes would look like and sound like if it was personified? Would it be a raging monster with fire coming out of its nose?  Would it be a person who looks sweet enough to invite in and then devours everything in sight?  Would it be a kicking, screaming little kid that you just can’t quiet no matter how hard you try?  What do you think diabetes would look like?

For some reason I have always felt that diabetes had a voice like James Earl Jones.  I don’t know that I actually envisioned what diabetes looked like; just that it sounded like the great actor with the booming voice.  I’m not sure why that is, but when James Earl Jones speaks, one is surely inclined to listen.  And to listen to every word.  He demands that respect.  When diabetes ‘has something to say’, do we not do the same?

I’m sure James will not be happy with me that I gave his voice over to the personification of a disease-state.  But imagine what your day would sound like if you woke up in the morning and you heard THAT voice inform you, (now picture James talking to you) “I took over your child’s night and I kept them up with my unyielding desire to keep blood sugars out of control.”  Couldn’t you almost picture that voice?  Maybe my thought is reinforced with the notion that James is also the voice that played such evil as Darth Vader….that kind of makes sense also….doesn’t it; diabetes and the ‘dark side’?

Here is the thing.  James Earl Jones is one of my favorite actors.  His speech about baseball in Field of Dreams is a classic and one of my favorite cinematic memories of all times.  And what bothers me most about my envisioning of diabetes having that voice, is no matter how great I may think it is, no matter how booming and intense it could be; if it was diabetes—I would still want it to shut up and go away.

Because even the greatness, and my fondness, of the great James Earl Jones would not make me like diabetes for even one second.  Maybe I’ll just go back to picturing diabetes with horns and flame-throwing voice, aggravating, screeching, and annoying character…….diabetes is not good enough for James Earl Jones….he deserves better, and in reality……..don’t we?

I am a DiabetesDad.
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Join Us Tomorrow and Learn How You Just Might Save a Life.

Save a child's lifeThis is copied directly from the DPAC website page—–if, and I mean IF, I am considered an expert in any way, it is ONLY from working with so many of you who have done so much.
If You are interested in finding out what you might do in your state…..join us tomorrow (12 noon Eastern Time—link is below) and learn how you may save the life of those with the missed diagnosis of diabetes.  Thank you to diabetes megastars Benet Dunlap and Christel Aprigliano; for asking me to join you in this incredible initiative.

Ask An Expert: Tom Karlya – How to ROCK State Diabetes Advocacy

Tom “Diabetes Dad” Karlya joins DPAC to share the success of Reegan’s Rule in North DPAC_ASKanEXPERT_TomK RegCarolina as a precedent for other states.

Why we’re excited.

Tom knows that advocacy happens when people act and where they act. He will share the heartbreak that drove the creation of Reagan’s Rule and how we can honor the children who have been lost to a lack of a timely diagnosis of Type 1 diabetes by working with our state legislatures.

Children with Type 1 diabetes are being missed; their symptoms are dismissed as flu/virus initially; causing extended hospital stays, enormous loss of workdays, incredible family hardship and in some instances, severe brain damage and death in children needlessly.

Learn what has worked.

Join Tom Karlya and DPAC on April 28 at 12pm Eastern by registering here.

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

 

Who. who. who? WHO?

OwlUnfair insurance practices. Fund raising for diabetes causes. New laws needed to protect the rights of people with T1D.  Patients dying, or becoming seriously ill, because of the missed diagnosis of T1D.  Schools not understanding their students facing T1D. Diabetes in third world countries.  People unable to afford diabetes supplies.  Supplies covered, or actually not covered, by Medicare/Medicaid.  Meter accuracy.  Camps.  Diabetes education.  The list is almost endless.

When it comes to diabetes, there is NO SHORTAGE of causes surrounding the disease.  What there is a shortage of, are the people to get the job done.  The plain and simple truth is that if we, as a community, do not fight for these causes…..who will?  Who understands better than us?  Who can speak better than we can?

It is, and will remain, up to us.

If we take that as mere rhetoric, if we say I do not have time, or if we say let someone else do it……much WILL NOT get done.  And maybe I have to resign myself that it is what it is and what gets done will get done.  People who read this very well may be the very same people doing more than enough already.  And if that IS you, than thank you for caring.  Caring for my kids, and your kids, or yourself, or the millions of others out there who are on this journey.

It just seems to me, that if there are almost 30 million people living with type 1 and type 2 diabetes in the United States (worldwide, that number increases), and if each had two people who care about them; that is an army of 90 million people.  If just 1% of that number were ‘doing something’—-ANYTHING—-that would mean 900,000 people are doing something to better the lives of those who battle diabetes.

There are not 900,000 people doing something…….and that makes me sad.  Just 1%.  So I ask, with a list a mile long…………………who will make a difference?

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

Do You Know Anyone with T1D Who Might want a Baby Some Day???……Read…….

Ginger babyI’m not a person who merely likes Ginger Vieira, no let me be crystal clear about this from the get-go.  Ginger is one of those people who if you know her, just if you hear her name, you smile immediately.  It’s safe to say that Ginger is one of my favorite people in this diabetes world.

She keeps it real.  Her writings.  Her video blogs.  She says what’s on her mind.  She is funny, delightful, direct, and more than anything else; she is knowledgeable.  She has had diabetes for a long time.  She knows what it’s like to live with it and NO ONE shares what it is like as Ginger does.  She will make you laugh, cry and most of all……think.  When I found out that she was having a baby, I was ecstatic because if you know Ginger, you know that there would be one VERY LUCKY baby in this world.

Ginger’s entire persona is electric.

As is Ginger’s style; she wants to help others.  She is writing a book.  A book from the point of view of someone who has type one diabetes trying to fulfill one of the happiest dreams of any couple……giving life.

Here is the deal, and Ginger explains this on her video, women with type I diabetes having a baby, is a very small market according to those in the publishing world ‘who are in the know’.  But this does not change the fact that there are things women should know about having a baby while balancing type one diabetes.  So rejection after rejection led Ginger and her CDE Partner, Jennifer, to venture out and do this on their own.

I got involved.  But I got involved not because I think the world of Ginger (which I do).  I got involved because at some point in this world, my daughter with type one diabetes, will probably want to start a family.  I want this book on her shelf when she decides to do that.  I want her to hear from someone who knows.  Someone who has been there.  I want, as I have always wanted, for her to have the tools to make sure diabetes does not get in her way, yet again.

I want her to do that badly enough, and I trust Ginger well enough, to help her get there.

If you have a daughter, or had a baby, or know someone with type one diabetes, help Ginger and Jennifer prove the publishing world wrong showing just how important this book about being pregnant, and having type one diabetes, will be by giving a couple of bucks at their program on kickstarter.  They have 32 days to raise just $3,000.  A whole bunch of people giving just a couple of bucks…….very doable.

Click here to see Ginger’s incredibly charming video (THIS does not surprise me at all). And see how you can get involved. Even if you chose not to be part by donating, you will love her video.

Ginger is accomplished in many fields, book author, inspiring video blogger, inspiring blogs….she is not new at this ‘writing and inspiring thing’ and to be honest with you, I did not invest in this to help Ginger; even as much as I believe in her—–I gave a couple of bucks because my daughter will benefit from this book.  So will someone you know.  Take a look.

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

NEWSBREAK: Little Esme Gets Diabetes Supplies and……..an Apology!!

Esme SCORE ONE FOR THE DIABETES COMMUNITY TONIGHT.  I was contacted by Esme’s mommy, Faye, tonight and she informed me that not only were Esme’s diabetes supplies approved by her insurance company tonight but Humana Insurance Company apologized as well.

Little Esme captured the hearts and involvement of the diabetes community on Thursday when it was reported that she was denied a total of six times from applications and appeals to obtain a CGM and an insulin pump by her mom’s insurance company.  Esme was diagnosed in February 2016 and her pediatric endocrinologist rallied for Esme’s welfare to have the proper diabetes management tools.  After the word got out and the facts appeared to present the case as just a series of miss-steps in the insurance process leaving a two-year-old to receive the bulk of wrong doing,  the diabetes community reacted in full force.

Faye wrote to me, “We know that social media and the advocacy work done by so many (especially BeyondType1.org) played a HUGE part in the quick turn around of Humana. In fact, I am pretty sure we not have gotten the same result alone. We are so grateful and look forward to continuing our efforts to obtain long-term change for all families.”

For those celebrating the Jewish Holiday tonight, one person wrote to me and called it a “Passover Miracle”.  The job is done.
You did that.  To all those who wrote an email, you changed a life tonight.  You changed that life for better, forever.

Not bad for a day’s work.  Good job Diabetes Community……good job indeed.

Shalom.

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

 

NEWSBREAK: Can You Care Enough About This Face To DO Something……..NOW!!!!!!

EsmeI try not to get involved in situations that deal with what is covered and what is not covered via insurance companies.  There are just too many variables for all of us to understand.  But this……THIS is something we can do something about; and now.  We need to speak up when we can…….today is such a time.

This story came to my attention via my friends at Beyond Type 1; I wanted to find out a little more.

I spoke with Faye tonight.  Faye’s daughter Esme was diagnosed…….just in February.  Turns out Esme’s endocrinologist and her medical team all agree that Esme needs to be on a pump and a cgm.  Seems like Faye’s policy in her health insurance company agrees it can be that way too…….but the insurance company, Humana…..does not.

As Faye stated to me in our conversation tonight, “we wanted to play by the rules and do it right.”  Documentation done.  Application done.  Docs approval all done.   All set…right? Wrong.

Among requests and appeals Little Esme and her family have been denied of these life saving management tools…..not once, twice, three or even four times……but SIX TIMES.  It’s the choice of Esme’s doctors for this management therapy, who am I to argue?  Who is anyone to argue?  The most recent decision was made by Humana, according to Faye, “…by an oncologist….” and the “…external hearing may not take place tomorrow because they were informed that they could not find a pediatric endocrinologist.”

REALLY!

Enough……this is sickening.
If I have ever asked you to do something please, make this the thing you respond to; send Humana’s CEO Bruce Broussard an email and just ask for a fair hearing to save Esme’s life.  Email Mr. Broussard via email bbroussard@humana.com.  Let him know that the pediatric endocrinologist HAS spoken, Esme’s medical team has spoken, and all have supplied the necessary paperwork needed and her case should be heard and decided…….now!

Tell him to hear the case of Faye Kolly’s daughter Esme and make the correct decision on Friday.  Why should a two year old little girl get caught in this nonsense?  She shouldn’t.

Send the email tonight.  Help change a life.

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

NEWSBREAK: If Diabetes UK Recognizes Missed DX T1D; Why Will Not Diabetes USA???

Diabetes UKIf Diabetes UK recognizes that there is a problem with missed diagnosis causing the death of people with T1D (type 1 diabetes)—how long will it take for the United States to catch up?   Why must everything happen in the UK first?—-I applaud them for their incredible efforts.

How many more missed diagnosed patients must die before we step up?
Here is their story of their recognition.

My Heroes.  And if you do not think there are any here in the USA……give me a call and I will introduce you to many….starting with Little Reegan’s family.

http://www.walesonline.co.uk/news/local-news/parents-teenager-peter-baldwin-who-11186103

We must not be afraid to step up and do something……we must.

WHAT ARE WE WAITING FOR?

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

 

 

 

 

NEWSBREAK: SERIOUSLY!!!! Yes…Again. A Child Dies. Missed Diagnosed T1D

SantanaThis was taken from their “Go Fund Me Page”.
For the loss of my nephew, Kedrick “Santana” Callaway
He was diagnosed wrong at a hospital, to find out it wasn’t a stomach virus… to find his sugar was too high for him which caused him to unexpectedly pass away.
He was born: 2/11/03
He died: 4/8/16
His mom is…. Shamora “Hope” Hall
a wonderful mom, a single parent, busting her butt to work and provide for her kids.
—end

If you have a few bucks lying around and feel so inclined…..to help this family….click this link to go to their Go Fund Me Page.

Do you think people, advocacy organizations, and the health community will start to believe that we indeed have a problem going on here?  Do you think they will ever believe it enough to do something?

I’ll keep screaming about it until the SILENCED Children’s Cry for Change gets heard.
As long I have air in my lungs I swear this fight will continue…..until these kids voices get heard loud enough to foster change.

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

NEWSBREAK: DEXCOM RECALL classified as most serious by FDA

Important NoticeIf you use the products discussed below, you should have received a letter from the Dexcom folks regarding the following.  This is copied exactly as written from the FDA page and the link to the actual page is at the bottom.  Please take heed to what is being said.  Devices are mechanical.  From time to time this will indeed happen, I have never known it to be different in over the last 23+ years I have been on this journey.  Companies do all they can to ‘right what went wrong’, follow the steps instructed to make sure your product is corrected.  SPECIAL NOTICE if your kids are not at home (away at school, vacation, moving around, etc) but the mail comes to your house.

Dexcom Inc. Recalls G4 Platinum and G5 Mobile Continuous Glucose Monitoring System Receivers Due to Audible Alarm Failure
The FDA has identified this as a Class I recall, the most serious type of recall. Relying on this device may cause serious injuries or death

Recalled Devices
  • Name of device: Dexcom G4 PLATINUM Receiver, Dexcom G4 PLATINUM (Pediatric) Receive, Dexcom G4 PLATINUM (Professional) Receiver, Dexcom G4 PLATINUM Receiver with Share, Dexcom G4 PLATINUM (Pediatric) Receiver with Share, Dexcom G5 Mobile Receiver
  • Model numbers: all models
  • Lot numbers: all lots
  • Manufacturing dates: July 29, 2011 to March 10, 2016
  • Distribution dates: October 22, 2012 to March 10, 2016
  • Devices recalled in the U.S.: 263,520 units nationwide
Device Use

The Dexcom Continuous Glucose Monitoring Systems are used to monitor the blood sugar (glucose) level of adult and pediatric patients with type 1 or type 2 diabetes. These glucose monitoring systems include a sensor that is placed under the skin to measure blood glucose readings that are sent to a hand-held receiver.  They are used in combination with standard home glucose monitoring devices in the management of diabetes.

Dexcom G4 Platinum Receiver

Dexcom G4 Platinum Receiver

Dexcom G5 Mobile Receiver

Dexcom G5 Mobile Receiver

Reason for Recall

Dexcom Inc. is recalling the Continuous Glucose Monitoring Systems because the audible alarm may not activate in the receiver piece when low or high glucose levels (hypoglycemia or hyperglycemia) are detected.

Relying on this product for notification of low or high blood sugar could result in serious adverse consequences, including death as the auditory alarm may not sound and users might not be notified of low or high blood sugar.

Who May be Affected
  • All patient groups using the Dexcom Continuous Glucose Monitoring Systems to monitor their blood glucose levels
  • Health care providers who prescribe these monitoring systems to patients in their care
What to Do

On February 23, 2016, Dexcom Inc. sent an Important Customer Notification Letter with the following instructions to test the audio alert on the receiver:

  • press the center button on your receiver to access the Main Menu
  • scroll down to Profiles
  • select Profiles
  • scroll down to Try It
  • select Try It
  • scroll down to 55 Fixed Low
  • select 55 Fixed Low
  • verify that you receive vibrations first (vibratory portion of alarm), followed by beeps (audible portion of alarm).

Customers should contact Dexcom at their free hotline number: (844) 607-8398, if the audio alert does not work properly.

How do I report a problem?

Health care professionals and consumers may report adverse reactions or quality problems they experienced using these devices to MedWatch: The FDA Safety Information and Adverse Event Reporting Program  either online, by regular mail or by FAX.

Here is the link to the FDA page.
http://www.fda.gov/MedicalDevices/Safety/ListofRecalls/ucm495448.htm

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

12,327,840 Minutes that Only a Parent of a T1D Child Will Understand.

refrig emptyThis picture is something only a parent will understand.  This is a picture only a parent could possibly grasp.  For the last 12,327,840 minutes of our lives, this door was our life-saver for our children since Kaitlyn was diagnosed on September 26, 1992 and then Rob on March 20th, 2009.  For 12,327,840 of the preceding minutes, this space in our refrigerator had to be ready to serve us at any given moment within that time span.  This space held the welfare of our children’s very lives.  This was the space where our ‘immediate’ diabetes supplies were both held and ready for Rob and Kaitlyn.

If you look real close, you can see faded letters from their names written on the clear plastic, but in a short amount of time, we knew which one belonged to whom without looking at the names on each.

As I opened it today, I just stopped and stared at the refrigerator door.  When Rob moved out yesterday, being the final one of our three kids to move out; his empty room had an impact for sure, but this space was both his and Kaitlyn’s; and THIS spot for immediate diabetes supplies has not been completely void of diabetes supplies in 12,327,840 minutes.

You can figure the amount of shots, and finger pricks if you want.  Opening this door was an eye opener for me.  All of our kids are now on their own.  As I think back, we can only set a foundation for all three of them; it’s up to them what they do with it.   For their lives.  For who they are.  For who they hope to become.  For how diabetes impacted the younger two directly; but all of us in some way.

But for 12,327,840 minutes there has been a lot of diabetes in that time frame.  I’m glad to have our refrigerator back; but dealing with diabetes, learning everything we could about progress toward a cure, and pharma’s bid to make better management devices, and stronger education for them to be ‘in the know’; I’m happier still that my kids’ got their lives back.  Diabetes is what they have, not who they are……we’ve all been working at that objective for the last 12,327,840 minutes…..and we will all continue…..until a cure is found.

In our refrigerator now; we have a glucagon kit and some juice boxes………..for when they visit.

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