Halloween and Diabetes….Be Afraid…..Be VERY Afraid……REALLY? Nope. Boo.

Insulin PumpFrom three years ago and updated but still a treat (get it?)…..enjoy.  Happy Halloween.

Within the next week will be Halloween. Halloween means so much to kids. Our kids with diabetes are no exception. I remember when Kaitlyn was younger and many neighbors bought stickers and toys for Kaitlyn; “…I did not know what to get for her”, Was a common response.  Not really necessary, but we just said thank you for their thoughtfulness…..and they were very; thoughtful.  People can surely be wonderful.

We were discussing this weekend, over coffee, that each year there was no doubt with all of the walking that Kaitlyn would do that ‘going low thing’ and it would not only occur; but almost always at the exact same block each year. (Spooky, huh?)  She would carefully choose something out of her bag full of treats (of course juice boxes and ‘stuff needed’ were readily available ‘just in case’—but letting her choose something from her Trick or Treat bag…why not?). We would wait a few minutes and continue on. Fun and frights continued.

By time she was out on her own in junior high school (in an era of no CGM like DEXCOM may I add) she was pretty well versed on how the drill worked on Halloween. In a recent conversation neither Jill nor I could remember any major adjustment on this date (and remember prior articles of mine stating Kaitlyn was considered as ‘brittle’, which translated meant she was extremely tough to control….it was a phrase we hated). On this day our kids strive and want to be just like all the others kids…….AND THEY SHOULD BE.

Let them.

I remember many conversations from people over the years who do not live with diabetes; how much Halloween must be a ‘disaster’ for us, having a child “who cannot eat candy”. People thought that we would deprive our child of this incredible right-of-passage. Those of us ‘in the know’ know better, don’t we? 😉

If you do not know….you should learn how close to normal you can make this day. Our kids are not driving close to a cliff during this day.  Don’t treat it as such.   Yes, be smart but every time you feel the word ‘no’ coming on……change it to making it about choices.

Of course we would control the candy; some gave money in exchange, some put the candy outside for the GREAT PUMPKIN to take and exchange for a toy; but we always controlled what the kids ate, what ALL THE KIDS ate; and we went through it all like every other parent did each year (you would be surprised how much leeway THIS gave us on removing ‘stuff’, think about it).

We all do/did ‘Halloween’ things.

There are many things that you can find online about kids, diabetes, and what to do. Today I want to check in with where YOUR head’s at.  Parents? You should not be afraid (pun intended) of this day and you should spend the time enjoying your kids while they enjoy the day.

Diabetes never stopped us on Halloween, never missed a day in all those years; and it should not stop you either. Go and enjoy. This is a holiday for kids to enjoy and with a little knowledge and a little ‘smarts’, the only frightening thing about the day should be at your front door when the doorbell rings.

Be afraid……..be very afraid? Nah…….enjoy; Halloween is nothing to ‘spook’ you.
…….and as a side note; Kaitlyn sits as an RN to take her CDE test in January.  Yes my dear colleagues/parents-in-arms…….They. Can. Do. Anything.
I am a DiabetesDad.
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Clean it Out of the Closet—For Me; Frustration…..You????

Cleaning out the closet w logoThis week is Diabetes Blog Week, the brainchild of Karen Graffeo at BitterSweetDiabetes.com and is the sixth year it has taken place.  Many writers taking-on the same topic…….but with a different take.  Very cool idea……thanks for the opportunity Karen.

Today–Day 3: What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?

PLEASE make sure you add your thoughts on what it means to you, after you read today’s article.

My ‘closet’ needs to be cleared of the frustration I feel in this search for a ‘cure’.  It is not something of which I can easily let go.  It’s the promise I gave to my daughter and again to my son.  But the results in the research world just seem to be so much slower than the research and development of devices and management tools.

Did you ever see the cartoon of Pepe Le Pew (for you younger folks, go to YouTube).  Pepe is a skunk who falls madly in love with a cat who has crawled under a newly painted fence giving the black cat a white stripe down her back; thus causing all sorts of confusion for the star-crossed Pepe who spends every cartoon trying to ‘win her over’……never winning.  Usually there is a point in the cartoon that will have ‘La Chase’.   The cat is all out of breath but Pepe, full of love, is in a twinkle-toe run without losing a breath.

That is how it feels sometimes.  You see; when you know what you want, and a device surely fits that bill, it is easy to throw all of your resources to ‘make that thing’ happen.  When you are unsure what will work, it’s a much slower pace, and a lot of trial and error to get to the finish line.  With a device, you get an idea of what the end picture needs to be, and you work toward it.  With ‘a cure’—-not as easy.

That said, let’s be clear, there has been much trial and error in this device arena as well.  And surely the end product is not going to look like everyone thought it would when the development began and where the thought was that there will be no personal intervention needed……I think everyone now knows that won’t be the case because we are human beings and not robots and our lives will influence something mechanical.  We will always need to be involved in some way. Things change while being developed.   It is also happening much slower than we all thought it would and were told as well, isn’t it?  But that’s okay too.  That is the world of set-backs, FDA governing in research; and all part of ‘the process’.

But we saw CGMs and insulin pumps ‘metamorphasize’ into everyday devices so we can picture that happening. We can see a ‘device’ go from A to Z.  We will get there. But what does a cure look like?  Since it has never been seen before (the closest being islet cell transplantation but with immunosuppression in place, not the answer; BUT some people are still off insulin–so even though not THE answer, we ‘tasted’ some of it), it is hard to recognize where it is hiding.  I have been at this a long time and I know we (the global diabetes community of wonderful researchers) will get there.  But being as closely connected as I am does not absolve me from wanting it any faster.  Being a dad wanting it faster is the frustration that gets to me sometimes.  I need to learn to let that go.  It is counter-productive and can leave one mighty lonely sometimes.

But THAT more than anything else is also the very same thing that keeps me at it everyday.  I have learned not to defend what I feel because everyone has their own feeling and that is their right.  They can support who they want and even say what they want touting whoever it is they believe in, which is fine also; that way we can all learn what is out there.

My kids are at the finish line each holding an end of the red ribbon waiting to be cut as the cure crosses the line.  It’s no secret of the faith I have in the DRI (disclaimer as everyone also knows that I work for their Foundation), but quite frankly (and I have said this before), me being a dad trumps how I feel about any entity……I just want to get there.

And THAT can get frustrating some times…….and I need to clean that out of my closet.  There is too much happening right now moving that process forward, good things.  But I want it yesterday.

I’m entitled;
I am a diabetes dad.

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

 

DIABETES BLOG WEEK: Keep it to Yourself – Tuesday 5/12

Diabetes blog weekDAY 2 TOPIC: Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.

Day 2 of the 6th annual blog week is listed above.  There is an absolute-ness of things that I will not write about.  It’s kind-of-a line that I have drawn for myself.  My kids have asked me not to write about certain aspects, and I have adhered to their wishes.  If I choose to write about things on my mind….it does not mean I have to share things about them.

It is the same with other family members.  Again, it’s my choice to write, not theirs.  I must be respectful of those things that have been asked.  I could tell you more……but….I will stop there.  Are there things that you will not share out here in the online world????….feel free to share them as well.

I am a diabetes dad.

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

 

 

Why Do Some Have Wonderful Doctors…..While Others……..??????

love my doctorDid you ever ask yourself why others seem to have the doctor from diabetes’ heaven and others leaves you scratching your head?  In my years, I have never been able to figure why there are such differences out there, but there are.  But it is not always just about the doctor.

What I do know.

Without a shadow of doubt there is NO QUESTION on the importance of the medical team who treat our children.  I also know that the more we know, the better advocate we can be.  There is surely a difference between challenging your doctor while being informed and merely asking questions about something that may result in better management care for your child.

There is a difference between asking should my child be on insulin pump and stating; “I think this about pump ABC and Pump XYZ; but I also feel ‘this’ about the new insulin pens out there, what do you think?”

Which seems like the better approach to you?

In 1999 when Kaitlyn wanted to go on an insulin pump, we did our homework, and not only were we ready; we informed our doctor that we wanted to wear a pump also (filled with saline) so we knew exactly what it was like for her.  We were that determined.  (and we did, btw)

If there was any resistance in the past, it was now gone.  And away we went and it changed the entire practice as they became one of the leaders in insulin pump therapy in this area.

If you look to your medical team for answers and have done no homework, you will receive nothing but their advice to consider.  Good as that may be, if you do your homework, you can ask questions about what you have found out and the BEST approach moving forward as a joint decision.  You have one patient (unless of course you have more than one child with T1), they have hundreds.  Know what is best for YOUR patient, in your opinion; and discuss.

There is not ‘just one’ of anything anymore and there are certainly more than one approaches to diabetes care.  Educate yourself and you will be much better off in the decision-making process for the proper day-to-day management of your child.  And if you have tried everything you can and your doctor is not on the same page; look around for another.

No one else will do it for you………………………start today.

I am a diabetes dad.

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

 

Buying Diabetes Devices???? Don’t Be So Quick….It’s a Business.

kick-the-tiresNo matter what decision may be facing you in this diabetes world, know this; the decision has been made before by others.  Is anything really that new and/or so unique in this world?  If the connection of social media has taught us anything, it has taught us that someone out there has gone through what we are going through.  And in many cases they are willing to help.

In the case of diabetes supplies, know this—-there is huge competition out there to gain your business.  For a second, well try anyway; take all of the emotion out of the equation.  Look at your child’s diabetes as if it is a business.  Because from a consumer/supplier point-of-view it is SURELY JUST THAT!  Don’t let that scare you, use it to your advantage.

Do you ask one person about buying a car?  No.  You ask a bunch.  You investigate. You go online and you kick the tires of more than one…….right?

Why, when looking to purchase a device, would anyone take just one person’s  ‘say-so’ on such an incredibly important decision?  And the one person YOU SHOULD NOT leave out; is the sales team for the device.   Cell them directly.

From a business perspective, they are going to make tens of thousands of dollars from the device you are about to buy.  If you walk into a car dealership and tell them that you are completely sold on their car, you like it, you investigated it, and you know you want it: and follow-up by asking them to give you great price——forget it.  You already tipped your hand.  And any sales person knows it.  Don’t give away the house.  Don’t tell them you are all set to buy or you will get nothing ‘extra’ whatever that may be.

And the same if you are ready to ‘renew’.  If you ever leased a car, YOU KNOW they are contacting you long before your renewal due date ready to make a deal.  I went into my phone dealer and said I was ‘thinking’ about my plan, and looking around (and I have been with the same company for twenty years).  They threw in the newest version of the phone for free and topped it off with a 20% discount EVERY month if I would stay.

Say nothing…………………get nothing.

Diabetes supplies are the same thing.  Sure there is only so much sales reps can do but know this; they do this ALL THE TIME.  They know the ins and outs of insurance, doctors, prescriptions, deductibles and THEY DEAL WITH IT ALL THE TIME.

Annnnnnnnnnnd they want your business.  So call them and speak to them about your concerns and see how their company can help solve your problems.

Always shop first and see what someone can do for you.  Also letting them know that you are active in the diabetes world is not such a bad thing either.  Because if they treat you well, you will tell others how good XYZ Sales Rep of XYZ Company was in solving your problem.  That results in continued sales.  They understand this VERY well (why do you think they call on so many doctors’ offices?).

You are the consumer making the purchase and in this day-and-age; there is so much competition.  Make them WANT you.

So as you look to purchase diabetes devices…….don’t run out and get the first thing that comes along; ‘kick a few tires’ first.  Make them WANT your business enough to fight to get it.  You just might be surprised at the results.

I am a diabetes dad.

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

 

A Crucial Diabetes Supply—-the Checklist…..Do You Use One????

checklistWherever and whenever you deal with diabetes supplies—the last important supply YOU SHOULD ALWAYS pack is a check list.  How many times have you gone to the school at the end of the school year to pick up the remaining supplies only to hear, “No that was not here.”?

Instant tension.

It’s not intentional but remember there are hundreds, if not thousands, of children in a school system.  Help them help you to avoid one’s word against another.  The last supply added should be a check list of everything enclosed.  When you pick up the supplies, of course juice boxes and edible items for lows would be diminished; but what about the spare meter, the extra 5 syringes, the bottle of insulin, pump supplies, and of course, the glucagon.

When we dropped off the items, we had 2 copies of the check list and we signed both and the school nurse signed both copies at the beginning of the year.  When we picked up the items, there was no question what should be ready to be picked up.  While we are at it……a call every two weeks to check if anything needs replenishing is not a bad thing either.

Same for when your child spends weekends away at someone else’s house.  You probably do not have to have the other person sign a sheet but you having a list with you will help you remember something when you pick up your child.  When visiting, we also would place our car keys attached to the diabetes bag; kind of hard to leave the bag behind in a rush if you have your car keys attached.

Just a couple of quick tidbits on keeping track of the supplies.  You go many places and do many things and a bottle of insulin here, and a meter there, and glucagon also—all of these left behind can not only cause grief but CAN GET a tad expensive also.

Plan ahead to avoid such hassles……..you have enough on your plate…….right?

I am a diabetes dad.

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