It’s the Most Wonderful Time of the Year………..School Opens; of Course.

School Open T1DYears ago there was a fabulous television commercial for Staples.  The Christmas song is playing (sing along with me), It’s the most wonnnnn-derrrrr-fullll tome of year…..” and of course the camera pulls back to revel parents gleefully shopping for back to school supplies while showing the kids’ dour faces.
Click here for the commercial. 

That time of year…….School’s open…..kids go back…..great, right?  Well not really for us parents of kids with type 1 diabetes (T1D).  But it does not have to be so stressful for you and/or your child.

After playing Drone-parent (what used to be helicopter-parent–hovering; what used to be diabetes-police parent) all summer, your child heads off, a little taller, a little more mature, toward the red carpet for kids (stole that from a commercial); the first day of school.

Where most parents, who do not have a child with diabetes, look forward to the new school year, parents to kids with T1D add two new words to their lives……HIGH ANXIETY.

From a guy who watched two kids go through school (with one child through every singe grade since age 2) may I offer a few tips on the school year.

1. 504 plan.  If your child does not have one, get one.  This plan is not just for the everyday things, they are for the unexpected things as well.
Here is a copy of the one we used, amend as needed.
and MAKE SURE NO ONE TELLS YOU THAT THEY UNDERSTAND and it is not needed…..it is your child’s right.

2. Feel free to send a quick note to all of your child’s teachers (yes, even in high school).  Above all else make it an open line of communication to you.

3. First day/week is a mind blower for kids as well….when they come home, do not jump on them ‘asking about their numbers’.  Ask them about their day, how was it, what did they like etc etc….trust me when I say the ‘diabetes stuff’ can wait a while.

4. By now you should have made time for the nurse and given her all of your child’s supplies.  If not, call and ask her if you can drop off your child’s supplies to be kept in the health office.  LABEL EVERYTHING with your child’s name, and have back-ups.

5.  Relax.  Now if you just dropped your child off at college I will change relax to have a drink.  If you think you have anxiety in school and high school, just  wait until you drop them off at college…..but we will save that for another day.

School’s Open……..Drive Carefully……and I do not mean only on  the roads.  Enjoy.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

The Journey is the Destination…Do We REALLY Fail?

Screw FailureI’m speaking to a friend who shares with me ‘how hard’ they are working (with their child) so that the next visit to the doctor they will have a different A1C.  “It’s so hard and we are doing everything we can. But the sacrifice will be worth it.”  Another friend struggling so hard to lose weight (which I am VERY familiar), “I really need to look better and am working so HARD to get there.” And still another friend on, “It’s my only goal to get out of this job.”

Then what?

I have often wondered what happens when someone reaches their goal when a particular goal takes up ALL of their time and energy.  As I watched the Olympics, I was struck by the comments on those who were in the Olympics in 2012 and failed to medal, and ‘…..came back to reach their goal….’

“Failed to medal”?  Wow.

So if you medal, you succeed, and if you do not; you failed.  Your body has become the most incredible specimen on earth and you are in the top .0001 % in your particular sport compared to the rest of the world’s population but if you do not medal, you failed.. And what about those who win.  They get their medal.  Then what?

When I left the acting world, after Kaitlyn’s diagnosis, you would be surprised on how many people asked me if I was sad I did not ‘make it’ as an actor?  Make it?  According to whom?  Awards?  Won a few, nominated for a few.  Money?  Made some.  Not tons. Interesting that I qualify for a pension when I retire from Actor’s Equity, not a lot; but more than about 90% who will not get any.  And I have worked with some REALLY GREAT projects over the years with the most talented people on earth.  Did I really not make it?

You see I learned a long time ago that the goals I reach for are every day.  Some goals with a stretch to keep me growing but it’s the daily goals that are the most important and here’s the thing; they’re my goals.  Not by the standards of others.  My goals.
When it came to our kids’ diabetes, same thing.  Our goals.

I did not compare to other people’s stories.  We did not live by numbers, for numbers, and against numbers for any other reason but close control mean feeling better.  Trying to stay away from ‘swings’ were for the only reason to feel better.  Success, and some better days than others.  We learned and we moved on.  But the goal was to try our best each day.  Because if you try your best each day, your goal is set and evaluated by working toward your best, and observing the perfect things already in your life.

A child’s smile.  A touch.  A gesture.  A good deed.  Being with the people around us. You know many….many loved ones are not with us anymore….would they not think that just having the ability of one more day a HUGE SUCCESS?   Many times when I travel, if I am at a restaurant I surely cannot take the ‘leftovers’ back with me to my room.  I ask for a box and pack up what I did not eat.  When I leave, I leave the box by a homeless person, and walk away.  It makes me feel really good.  What was the effort?  Zero.  Do something for someone….smile on face, goal reached.

My point is that the world is harsh on how we look, what we do, what we don’t do; but yet how much does the world give us to succeed?………so why let the world dictate on whether or not we are successful. How much are you succeeding at that is going right by you.   Set a goal today, small as it may be.  And go for it.  Notice the goals you do reach.   The majority of us do not have that ‘drive’ to become a Professional or an Olympian and I applaud those who do.   But honestly, I would rather work toward something each and every day that I CAN achieve than to lay it all on the line to have ‘failed’ and need to try for another fours year to ‘try again’.

I’ll take a lot of little reached goals reached daily thank you, and will try tomorrow again. A lot of ‘littles’ make a life.  Think about it.

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

 

When Did Insulin Enter the Oil Market? Rising Costs Seems that Way.

insulin oil wellHave you ever seen a story in the news about the rising cost of oil prices?  Usually a photo of men hovering together as if to show that they control the price per barrel and the rest of the world can only watch and wait…..and bear the brunt of whatever decision is made.  You’ve seen it, right?

The cry came forward from administration to administration how we had to be less reliant of foreign control of oil prices.  It impacts us all.  It’s a scary thought when we are confronted with the fact that a few are making a decision impacting many.   Because of this impact, it garners the attention of the news media.

When it comes to diabetes, there has been stories lately that seem to be missed by many and is becoming an increasingly worry-some fact.  The cost of insulin has been on the rise.  It’s been on the rise for some time.  In a Los Angeles Times article by David Lazarus almost a year ago he quotes Dr. Mayer Davidson, “…..Davidson cited a recent paper in the Journal of the American Medical Assn. showing that prices of both generic and patented insulins have jumped more than 500% since 2001. The cost of a vial of one of the most commonly used fast-acting insulins, Humalog, soared to $234 this year from $35 in 2001, the journal said….” (9/4 2015 LA Times)

What? And who do you think pays this?  Answer, us.

It’s not as if there is a shortage.  The American Diabetes Association states on their webpage; “ All insulin available in the United States is manufactured in a laboratory, but animal insulin can still be imported for personal use.” (Cite: Click Insulin Basics).

Now to me, I take it that there should be a fairly limitless supply as long as the manufacturing equipment has the materials needed.  I’m pretty sure they do. So if there is enough to make what is needed, why the rise in cost?

This rise in insulin cost, to me, is just because a few companies control the substance that keeps people alive.  They can dictate the prices because it’s not as if there are a million brands that would keep the consumer cost to a minimum, so much for consumer choice.  It’s because you have a choice of only a few.  Demand dictates cost.  With over 29 million people with diabetes and millions of those on insulin with only a few choices…….well that equals what we are now facing.  Glut. Greed. Money. Costs escalating.

But when people are prolonging their insulin doses by cutting back on what they feel ‘they absolutely need to have’ due to high costs, as oppose to what the doctor, recommends, and what the patient knows they need; ladies and gentlemen—-this is a real problem.  This could cost lives.

Keep your eyes open on this topic.  When you see advocates asking for actions, act. Join dPac today. If you have diabetes or a loved one with diabetes, this is site you might want to follow as they do an incredible job on ‘acting’ in all fields of diabetes. DPAC was co-founded and is run by patients with diabetes: Bennet Dunlap and Christel Marchand Aprigliano. Joined by other diabetes patient advocates the Diabetes Patient Advocacy Coalition (DPAC) is an alliance of people with diabetes, caregivers, patient advocates, health professionals, disease organizations and companies working collaboratively to promote and support public policy initiatives to improve the health of people with diabetes. DPAC seeks to ensure the safety and quality of medications, devices, and services; and access to care for all 29 million Americans with diabetes.

Insulin is not oil.  It would be a shame if these costs are controlled in a board room.  I fully understand free enterprise….but when a ‘controlled market’ of people are paying too high a cost to JUST stay alive…..someone needs to step in.  People will die.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

 

YOUR LAST CHANCE IS TODAY—-Do You REALLY Care About Those who Died?????

voice mattersOkay, I admit that the title was a bit much…..but so many who should be involved in this have yet to do so.  AND THIS IS SO IMPORTANT. Remember your anger reading about the so many who have died, or became seriously ill, because their diagnosis of T1D was missed?  Kycie, Little Reegan, and so many more…..remember?  How angry are you?  Angry enough to do something?

For the first time, there is an attempt to capture as much information and data as possible regarding this issue and YOU CAN HELP.  This is YOUR LAST CHANCE to be part of history because tomorrow……the survey is done.  Today is the last full day.

Because of the requirements of his survey….you must become a member of Glu. It is a great site asking great questions all the time…..you can choose to be part for as much or as little as you want; and for as long as you want, but to give this survey credibility, it is required by the ones who gave it an IRB Approval. (Institutional Review Board).

Go to www.myglu.org.  I purposely do not have a direct link from here to their site because if there is a link through ‘my cookies of my computer’ the survey will not be available because I took it already.

Once a member, go to the right side and click ‘My Diagnosis Story” and take the survey. It is there that you can share your story.  We REALLY NEED as many parents as possible so please consider it.

The name I gave this movement years ago was a Child’s Cry for Change…..please help those voices be heard……take the survey today.  Be counted.  Thank you.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Hey, Moms of Kids with Diabetes—Olympic Moms have nothing Over You…..Take a Bow.

Olympic Rings MomsOlympic parents.  Specifically Olympic moms.  Ever see them in the stands?  Close-up, upon close-up, of the moms who know everything their child sacrificed and diligently worked at to be in the Olympics.  Proctor and Gamble even did a commercial about Olympic moms.

Yeah, so what.

Actually I don’t mean to belittle those moms and in fact I have great respect for them, But I also am very aware of a different kind of mom.  Moms who go through life with the same hope, the same expectancy, the same anxiety, the same disappointment, the same joy, and the same drive for gold…….but there is no camera showing a national audience the faces of these moms…..in fact there is not even a gold medal awaiting their child…….nit even a bronze….because these moms are dealing with diabetes in the privacy of their own lives, and not in a national spotlight whatsoever.

But make no mistake about it……those facial expressions that you see on TV with those Olympic moms are just as present on these special moms, and are there every day because moms of kids with diabetes are just as diligent, just as involved, just as hoping-for-the-best as any mom of any athlete competing in Rio.

And that’s you (yes, I know—-there are dads too).  So to all of those kids out there living with diabetes, this is to your moms who help their kids strive for gold every day in their own lives.  The gold of getting EVERYTHING life has to offer.  Moms do that.  Your mom does that.  So moms, Imagine your picture within the rings of the picture I included, these are but a handful of moms; but we know that you could fill the entire city of Rio, if you wanted.  Without fanfare, without spotlights, without commercials about what you do…..but just because you are you……you are, indeed, gold.

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

It’s Taboo. No One Talks About It. Learn about it, Today.

ScalediabulemiaIt is my hope that people will pass this around, especially to young people.  Especially to women.  We do not know what we do not know but this is real, this is so harmful, this is happening right under our noses……it is Diabulemia.

Diabulemia, an eating disorder unique to people with type 1 where sufferers skip or reduce insulin injections to spur weight loss.

TODAY—-Susan Weiner, a POWERHOUSE in the diabetes world will be holding a webinar with Special Guest Betsy Tracy, who will share her story and both will share their expertise and insight.

This is not the kind of thing you confront someone with and say, here this is for you……. but PLEASE post this in as many places as possible hoping that our young people might see it and tune in.

TODAY AT 1 PM EST—IT’S FREE….CLICK LINK TO REGISTER
http://www.diabeticlifestyle.com/webinars/dangers-diabulimia-what-every-type-1-needs-know

If you are concerned for your child—share this and also tune in SO YOU KNOW warning signs.

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

Dear CWD FFL…….Thank You for Saving My Children’s Lives

CWD FaceDear Children with Diabetes Friends for Life,

It’s been 17 years since we started together.  Wow!  Where did the time go?
I don’t know if I’ve ever said this to you before, so I’m sorry it took so long.
Thank you for saving the life of my first child, and also for saving the life of my second child upon diagnosis of this dreaded disease.

After 17 years I looked around this year’s event in Orlando last week and reflected on how fortunate I have been to be here, since day one.  To many, I guess, I’m a CWD FFL insider when in truth, I’m just a CWD Dad.  I volunteer here, and there…….. as so many others do.  None of us are your favorites but what we are is YOUR ARMY of volunteers because in the beginning people were there for us — we must now be there for others. If you are now involved, you should get involved to pass it on also.

You’re not a huge organization with a huge infrastructure……no…..you are a group of people, friends for life in fact, who believe in just plain ‘ol helping. Helping because a two-year old has been diagnose and there is nowhere to turn.  Helping because we are up at 2 am and we don’t have to explain it to you.  After years of turmoil and doubt, coming here we did something we had not done in a long time, we laughed.  That happens when people are comfortable with each other, they laugh.   That happens here.

There were so many sponsors present……but not all….not enough.   It bothered me that Medtronic was not there this year.  Not sure why, its none of my business really, I’m just a volunteer.  But when my daughter went on their pump in 1999, I guess families mattered back then.  I guess they don’t anymore.  I’m sure it bothered you also, and I’m so sorry that it’s such a struggle for you all who plan and coordinate this incredible event all year-long.

You should not have to struggle to get companies involved.  People in our world are VERY LOYAL.  Friends for Life also means clients, patients, and customers ‘for life’….and they should think about that a little bit.  You should not have to seek out companies, they should seek you out to learn how to participate.

When my daughter was a very young age, we learned that education was the equalizer to battling this disease.  We learned to do all we could to ‘own it’ so it would not own us. We were taught.  We listened.  And in-between all of the sessions of knowledge and the updates of research; we laughed.  We talked.  We grew to love people who needed no explanation when we had to do ‘something diabetes’…….they knew.

And after 17 years, I have watched so many children thrive in the world around them. Mine included……because of you.  Us parents learned a thing or two also.

We have been taught and taught well.  No easy feat.  In fact, an impossible feat if one dare to sit down and actually figure out how it all comes together.  But it does.  There is only one explanation that can probably explain it.  Sponsors who care, volunteers who care, families who care and all who dare to dream of learning together….because good friends do that, but those who do it to save the life of a friend’s child are more than just good friends………we are friends for life.
Thanks again.

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

Is Your Life Better…….Because of Diabetes?

betterNow hold on for a second and stay with me.  I have been at the CWD FFL conference this week and one of the speakers posed the question similar to what I asked in the heading.  Because of diabetes my life is better…….
I answered,  “It’s not.”
My positive attitude is not changed, my incredible life experiences are not diminished, my spirit is far from broken……what I said is that I’m not giving diabetes the credit for anything….it has taken enough.

Here’s why.

Children with Diabetes is the product of Jeff Hitchcock saying diabetes will not do; but Jeff did that, not diabetes.
Friends for Life is the product of Laura Billetdeaux saying diabetes will not do, but Laura did that, not diabetes.
The JDRF is the product of the Ducat and Lurie Families saying diabetes will not do, but they did that, not diabetes.
The DRI is the product of the Singer, Kleiman, and Mintz Famiies saying diabetes will not do, but they did that, not diabetes.
Almost anything positive, and there are many, that has happened in my diabetes journey has happened not because of a disease that has its only existence to destroy anything in the path of creating life saving insulin producing cells; but rather from the people who saw diabetes for what it is and changed the course of history despite of what diabetes ‘wants to do’.

Enriched?  On so many areas that I, both, cannot count and surely am not worthy.  Being enriched comes from the action of so many people who I have grown to love and my life would surely be emptier without.  It was the choice of people to enrich others; the sole purpose of a disease like diabetes is only to destroy….in my eyes the devil is not getting anything.  Actions of people caused the good.  I would change, in a New York minute, everything if I could switch back to my kids not having it all.  Who wouldn’t?  I don’t want to be ‘in this club’.  But I am; and I could not think of a more incredible group of people to be along side

But this is me.  And as many things that are on my mind, I bring it out to you for discussion and for comments to create a dialogue.  I still believe that people with diabetes are incredible and so are their caretakers (that’s you parents) and I’m inspired and amazed all the time.

I’m constantly amazed when someone tries something new to make a difference, like Beyond type 1.  I’m amazed at new technologies like “BAP” (that’s my acronym for the Bionic and Artificial Pancreas), the BIOHUB, new insulins, CGMs and so much more.

But everything good that has happened has come from SOMEONE saying that diabetes in the state that it is in, just will not do.  Why should we give diabetes the credit for that? Doesn’t it TAKE enough from us without us giving it more…..much less giving it CREDIT for anything?  Think about it and chime in.

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

We are America.

flagWe are America.
We are bigger than attacks knocking down our biggest buildings.
We are bigger than assassinations of our leaders.
We are America.
We are bigger than when our weakest are struck.
We are bigger when our strongest are made to fall.
We are America.
We have cheered our teams, we have buried our young.
We have lost jobs, we have cleaned the aftermath.
We are America.
We have survived for years, we will survived some more.
We are bigger than any one person, we are bigger than any one election.
We are America.
We believe in freedom, the right to say what’s on our mind.
We will die to defend those rights, we will die to protect our neighbor.
We are not perfect.
We have our faults.
But those stars and stripes mean something to us, you see
We are America.
We serve. We protect.  We die.  We live.
We move forward.
And today we celebrate.
Happy Fourth my fellow Americans.
God Bless America.

I am a diabetesdad.

2016 Lisa Awards, A Family, Elected Officials, an Organization, and a D-Mom Blogger. YAY!

Lisa and MarkSo hard to believe another year has gone by.  Each year around June (her birthday), in honor of my friend Lisa Carlinsky, I bestow my Lisa Awards — kudos to people who understand the power of one person. To people who, in their own way, changing the world just like Lisa did.

My friend Lisa passed away in 2009, at the young age of 36. She battled cancer longer than any doctor thought she would. Through her life, I learned a hugely powerful phrase that will live inside me forever, along with Lisa’s memory: The power of one person.

Here is a quick summary of Lisa’s story, before we get to the awards.

She was diagnosed with cancer.  Lisa and Mark (her husband, who is as close to me as any brother) shared their writings of her journey with a hundred or so friends and family members, all of whom were inspired by each word. People learned, shared, and were in awe of their strength and dedication.

And then something happened.

People who were not part of the inner circle started reading the blog posts, and those people became inspired. The hundred readers became five hundred. In no time, the number of readers rose to 1,000, then 1,500. Soon 3,500 people were following Lisa’s story at every turn, both the good and the bad.   Lisa and Mark were so brave in the face of incredible hardship and they inspired others to do the same with grace and dignity, sprinkled with humor.

And then something else happened.

A TV station found out about Lisa and they ran the story on the evening news of her incredible efforts to teach others. Millions heard her story and were inspired by the magic she possessed — the determination to live life and taste every last drop was shared with millions.  So many others facing trials hit them ‘head on’, inspired by this young couple.

Eventually what Lisa and Mark shared so openly, became a reality and she succumbed to the physical-ness of what cancer can do.  Her spirit, though, was never defeated.  The war would go on with Lisa and Mark’s teaching. Her “power of one” changes lives to this day.

This column, surrounding Lisa’s birthday month, pays tribute to those who understand Lisa’s philosophy of the power of one person. Because I’m more versed with the happenings inside the diabetes community, my Lisa Awards are given to those people who live Lisa’s determination to make a difference with the “power of one” in the diabetes community. These people don’t do it — whatever it is — for only themselves, they do it because they think it will make a difference in the lives of those with diabetes. Lisa’s words live in these special people — they know and understand the power of one.

So my 2016 Lisa Awards go to:

reegan sun glasses  The Family of Little Reegan.  As I thought about this, and after meeting their family; each and every one of them played a role in making sure Reegan’s Rule became law in North Carolina; the first of its kind.  Much has been written and many others became involved.  But when there was no one around, when there was no one fighting the battle, when there was no one to help…..there was the Family of Little Reagan.  They received a promise that their little girl would change the world.  With the  movement to stop missing the diagnosis of diabetes picking up steam, that promise will be fulfilled.  This one little girl, the power of one, in her short lifetime may very well impact the welfare of kids around the world more than those who have many more years to achieve it.

Representative Graham Senator Smith  Representative Charles Graham and Senator Jane Smith of North Carolina.  These two people could not be more different from their personalities to their political affiliations…..and yet….they reached across the aisle and worked tirelessly in the efforts to make Reegan’s Rule the law of the land.  One has no idea just how hard it is go through the entire process in making an idea become law.  The bipartisanship and the wisdom of these two elected officials are something the rest of the country should stand up and take notice.  Each a power of one in their own right, came together to accomplish the impossible; on October 20th, 2015, Reegan’s Rule was signed into law by the Governor of North Carolina.  Bravo to all who made a difference.

glu GLU/T1DExcgange is my third Lisa Award Recipient.  This organization is presently undergoing an incredible outreach to capture the data that could help present a roadmap of change in the years to come on the missed diagnosis of T1D.  Anna Floreen, Dr. Henry Anhalt and Executive Director Dana Ball (and Co-founder of T1DExchange) are the ones in the forefront but here has been so much work done from people we will never know to make their newest survey regarding missed diagnosis a reality, that truly the fair thing to do is pay tribute to the entire organization.  Many components making up the power of one to change the world we live in, GLU/T1SExchange embodies Lisa spirit as few others ever could.  This data will indeed change the world.

dmom My fourth Lisa Award winner is D-Mom Blogger, author and super advocate, Leighann Calentine.  Her Kids First, Diabetes Second has always been and continues to be a must read and her blog should be visited as often as possible.  Her wit, style, and direct-from-the-hip delivery will enlighten you, inspire you, challenge you, and let you on a little secret—-parents can really have a life outside this diabetes journey.  She is as humorous as she is poignant.  When reading anything she writes, one always feels like a really good friend has sat down next to you in the biggest easy chair to talk with you.  And like a true friend, she does not always tell you what you want to hear; she tells you what is real.  Her long list of awards and accolades are only surpassed by her huge heart to make a difference in our world.  She is a powerhouse, and all done as Leighann would do it…..with integrity and honesty.

So these are the Lisa Award winners this year.  And as always when I write this annul column, it brings me back to a woman who I cherished.  He son is growing-up to be a fine young man and in a wonderful way. Mark (my adopted brother), her husband, has found love again; as Lisa would want it.  And life is moving on.  But Lisa will always and in all ways be present.  And in as much as I love doing this article every year, I still miss our friend, Lisa.  She was some power-of-one.

Congratulations to this year’s recipients.

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