Your Child with Diabetes has a Sibling, Don’t Forget It

In this day and age, if you think your kids are not, somehow and some time or another, on the internet, you would probably be mistaken.  One statistic states that only 15% of parents are ‘in the know’ of their child’s access and use of the internet (https://www.guardchild.com/statistics/).  So let’s assume that stat is roughly correct, that means whatever you post, write, vent, argue, and generalize; it’s a pretty good chance your child has access.

I have stated in the past that I’m no fan of posting kids in their hospital bed but not because of the impact, I get it and there surely have been hugely powerful photos of such.  But how would we each feel if someone took a picture of us at our absolute worst and posted it with a caption, “Take a look, I surely feel bad for my mom today”.  Think about it.  But my main reason for today’s article is if you have more than one child.

Not more than one child with diabetes, just more than one child. I cannot tell you how many times I’ve seen a picture of a child with diabetes and what a hero they are with flowers, certificates, trophies, and all sorts of fun stuff celebrating their accomplishments.  To be clear, that is wonderful and knowing they accomplished these feats while battling diabetes makes us incredibly proud, and rightfully so.  But I’ve also seen these very same pictures with a smiling sibling looking on and when I scroll back through someone’s FB page, I just do not see any of the sibling and their accomplishments.

Be careful.

In as much as we are all proud of what our kids accomplish in their day-to-day battles, remember to single-out something your child without diabetes has accomplished. Post about that. Brag about that. As my dear friend Dr. Richard Rubin used to say, “make it about balance”.

I can tell you with most certainty that your children know the times; a trip was cut short, a detour had to be made, something different was served or left out, more time was paid, and in general a bigger fuss was made over the child who has diabetes.  And that is fine and at times completely unavoidable, just make sure you stop, every now and then, and spotlight those children who do not have diabetes.

Let them decide where to eat some nights, or what movie to see, or what activity to do.  Our children without diabetes know every corner that was cut on them because of their sibling with diabetes.  What do you do to booster your child who lives without diabetes?  Look for those events and highlight them.

Praise is cool.  Everyone likes it.  Give it away, and often, to ALL of your kids.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

They Were So Young, We’re Parents, it’s what We Do

Our eyes become cloudy after a while.  While the road roars past us at 200 miles per hour, we see only a frozen puzzle piece held in the grips of time as, a memory, at best.  Speak to most parents and they will tell you sentence, chapter and verse what happened the day their child was diagnosed with type 1 diabetes.

They will know what they were wearing, they will tell you how their day started and more than that, they will tell you how their day ended. One parent went home to take care of the house and any and all left inside, and one parent pulled up a cot, a chair, or anything that could hold them as they stayed with their child that first night diabetes entered their lives.

There are a million stories, some as heartbreaking as there are those that were just a quiet roar; your new normal has arrived. Some became huge worldwide advocates and some just tried to get their lives as close to normal as possible, to live like life was at one time.

Our heads became full of stories and facts and what was needed moving further. We listened, we nodded, but we also knew that what we needed to know we would learn by doing not by what others said.  The newest and meanest definition of on-the-job-training. Our wonderful relatives trying to be experts with what this was and how long our children would have it, would be so far removed from what we would learn. It’s not the same diabetes as someone’s grandma, or even someone’s dog.  It is our child’s diabetes and it is here to stay.

Some full of passion argue points that those of us who have been at this a while, don’t feel the need to partake anymore.  Shots vs. automated, cloud vs. electronic, and even bare feet vs. sandals at the beach.  What we know, is what works for us. After a while you learn, it becomes how THIS impacts us because at the end of the day, it’s truly all that matters.

The world of diabetes will not change unless many pick up the fight. As long as I have breath, that fight will continue.  That fight for a cure.  That fight for a better world for those who live with this disease 24-7-365.

This week was year 27 in this battle.  And as tired as I may be and as much as I don’t understand so much; it pales……I mean really pales……..compared to those who live with this disease.  The Kaitlyns, the Robs, The Kellys, The Michaels, the Scotts, the Marissas, the Nors, the Monicas, the Sams, the Nicoles, The Jims,  and the list goes on and on and on.  They are the heroes…..the REAL heroes.  They live life.  And that is a pretty special driving factor for us, the parents.

Those who know, need no explanation. Those that don’t, would never understand anyway. When they get a break, we get a break.
Not before.
We’re parents, it’s what we do,
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

The Focus MUST STAY IN WASHINGTON, Not The Problem with Less Expensive Insulin

There has been much discussion of late regarding insulin which is available at places like Walmart for a very reasonable expense.  Some are saying/reporting that people died by going on that particular insulin which they were forced to do because of the cost of the insulin usually used has skyrocketed out of control.

I’m not here to argue this point; sides are drawn and the battle to be right is occurring in many places all around us in the diabetes community.  What I would like to do is make a few points for all of us to think about, while we wait.

What we are waiting for is my first point——there is absolutely no reason on earth why anyone should stand idle and not keep up the pressure of advocacy at the boneheads responsible for these out of control insulin prices.  That fight needs to continue and needs to continue constantly.  There is absolutely NO REASON for any individual with this disease to not be given the insulin, THE BEST INSULIN, they need to survive.  That point needs to be clear.

Whether some like it or not, believe it or not, many people have survived using what is available at a lower cost. Before many of the diabetes tools in our diabetes tool box now available, there were limited resources.  When the insulin ‘hit’, sometimes it was like a crashing airplane.  Crashing was as much in our discussions as high and low blood sugar.  It was part of what we had to deal with, and what we had to do and with proper medical professional help, we charted the best course available.  Guess what? Some people died back then using this method.

Guess what?  Some people also have died because of something to do with their insulin pump.  Whether it malfunctioned or was not used correctly, is not always known.  People also die when a car malfunctions or is used incorrectly. We cannot stop driving anymore than we (or our kids) can stop taking insulin.  In the latter case, stop taking insulin is a death sentence.

Any fool can go out there and say that this is much ado about nothing because an alternative is available at Walmart.  It’s a stupid statement at best. TOTALLY AGREED. But……..BUT, until such time that this can get fixed, people with diabetes need to take insulin. And to change ANY course of treatment must have, and needs to be done, under medical supervision only.  There is no WAG (wild-ass-guess) here because that can cost you your life.  ANY CHANGE TO YOUR TREATMENT SHOULD BE DONE UNDER MEDICAL SUPERVISION ONLY.  PERIOD.

Remember the discussion how treating this disease is very personal and is different with each person? That there is no ‘one size fits all’.  Even with medical inclusion, we still have to pay particular attention to everything diabetes.  When you change one thing, it changes many things in one’s life.  It’s the truest form of real-life-domino-impact that one will ever see. So if some people are making the lower insulin work for them, are they wrong? If some people want the fire to get turned up in Washington so people can use the insulin they want; are they wrong?  What happened to one person’s treatment does not necessarily have to be the same as another’s?

I’m seeing a ton of energy from people trying to convince the world that it’s better to have nothing, than use the less expensive insulin available.  That’s just not true or my daughter, and many others, would be dead already because we were using that-type- ‘cocktail’ for years.

Is it a solution? No. It’s a stop-gap measure until the folks from Washington can get their heads out of their……let’s just say, the ground. Want to argue that point, argue it with Washington folks because arguing with those who do not have the power to change anything, is wasted energy.  No one should want or have the need to be right about this, what we all need is to see this resolved.  The pressure needs to stay with those who can, and who must; rectify it once and for all.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Brittle Diabetes?…….and Other ‘Fun’ with Names

I have always found some of the terminology used in our diabetes world a bit…….odd.  How many of us have been in the company of strangers when our child, who is a good distance away, checks their blood sugar and shouts to us; “I’m high again!”  Funny to watch the strangers hearing this and shaking their heads in a ‘tsk-tsk’ shame on us and our drug addict kids.

Not a big fan of the Type 1/Type 2 naming club either.  Now I also think that we can waste millions of hours in trying to change it and many have certainly tried.  But I am not so sure I have ever heard of a Type 1/Type 2 Cancer, allergy, MS, cystic fibrosis, flu or anything else for that matter.  Type 1…..type 2…..really?  Nonfunctional Pancreas Diabetes……..or NFP………and Low-functional Pancreas Diabetes LPD….perhaps.  But truthfully Type 1 and Type 2 is surely better than Juvenile and Adult Onset Diabetes……what a mess THAT was…….right?

Another phrase I have always hated, never understood, and also lived with in one of our children is Brittle Diabetes.  Short version/definition is extremely hard to control diabetes.  Brittle sounds like if you drop it, it will break. Also interesting that it is the same name as a hugely high in sugar peanut-candy treat, don’t you think? It certainly does not describe what we went through.  Perhaps, ‘what-the-heck-is-going-on-we-never-sleep-she-has-no-idea-what-she-is-feeling-and-we-all-feel-out-of-control diabetes might be a better name although tad long I admit.

How about in your life? What diabetes phrases or words have had you scratching your head? Perhaps it keeps you up at night.  Or up in the early morning.  In the dawn….a dawn phenomena, oh wait………

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

DDRC ACTIVATED for Hurricane Dorian—-Kindly Share this Information

THE DDRC IS ACTIVATED—BELOW IS IMPORTANT INFORMATION REGARDING
DIABETES CARE  PREPERATION BEFORE AND ACTION DURING THE INCOMING
HURRICANE DORIAN STORM

PREPARATION 

Resource Link: https://www.diabetesdisasterresponse.org/

  • If you have diabetes and Hurricane #Dorian is heading your way, make an emergency diabetes kit. Download the DDRC Patient Preparedness Plan to learn what you need to manage your diabetes and remain safe and healthy.
  • Don’t get caught in Hurricane #Dorian without medication and diabetes supplies. Download the DDRC Patient Preparedness Plan to learn what you need to manage your diabetes and remain safe and healthy.
  • Be prepared for Hurricane #Dorian. During times of disaster you face unique challenges. Make a plan to stay safe and healthy. Download the DDRC Patient Preparedness Plan.

Hurricane #Dorian – be prepared and stock up on extra diabetes supplies. You may be eligible for an emergency supply of insulin and prescriptions. Call your pharmacy now for details. Find more information here.

Twitter:
Hurricane #Dorian – are you prepared with your diabetes medication and supplies? Download our Patient Preparedness Plan for guidelines on how to prepare for an emergency.

PRESCRIPTIONS

  • Running low on insulin or other diabetes supplies? If you live in (#Add in GEO Targeted Location) and are impacted by Hurricane #Dorian, you may be eligible for an emergency supply of your prescriptions. Call your pharmacy. Find out more here.

 

DONATE SUPPLIES

  • Are you interested in helping the diabetes community and friends impacted by Hurricane #Dorian? Donate your extra supplies to Insulin for Life. Find more information here:http://ifl-usa.org/what-we-need

DURING STORM

  • If you or your loved ones are in the path of Hurricane #Dorian and have questions about your diabetes medicine and supplies due to the storm, please call the ADA call center (1-800-DIABETES).
  • Need to find an open pharmacy? If you have diabetes and are impacted by Hurricane #Dorian and need insulin or other diabetes supplies, call the ADA at (1-800-DIABETES). Or try, RxOPEN https://www.healthcareready.org/rxopen
  • Health care provider emergency diabetes supply hotline. If you know of diabetes supply shortages in your community because of Hurricane #Dorian, please call 314-INSULIN for help. This line is reserved for healthcare providers only. Not a HCP, call 1-800- DIABETES for help.
  • 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. Call the manufacturer for details. Find their number here and check out our tips for storing insulin and discarding sharps.
  • Find a shelter. The American Red Cross has a live map you can search. Or, call 1-800-RED-CROSS. Hurricane #Dorian. If you find yourself in a shelter without proper diabetes care and supplies, call 1-800-DIABETES for help.

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

 

How to Neutralize the Grim Reaper………Live Now

If there is one thing I have noticed in life, it is that in death, we go it alone.  Millionaire, pauper, movie star, criminal, politician, blue-collar worker, and everything in between.  There will come a day we will all draw our last breath and everything we were in our lifetime will be left behind as we cross-over to whatever is waiting on the other side.

I share this bit of cheery news because in as much as in our demise we will go it alone, there is so much to take advantage of while we are here.  I’m shocked at how many times I read people’s comments that they are dealing with whatever they are dealing with…….all alone.  My questions is……why?

There are so many places to turn in the online community as well as resources galore right where you live.  Whether you want friends or are seeking information for dealing with your child’s diabetes, help is out there.  The catch is, you have to ask for it.

I know many people who have found the love of their life on a dating site.  So many have shared that they had huge doubts when they started but they took the chance and now, well many are happier than they have ever been.  I honestly believe that there is not a question you can have about anything that you cannot find the answer by someone in the online community.

Now due diligence states you must include your medical professional in your dialogue regarding health and there are many cautionary steps in reaching out to the online community but far and large, it is the greatest resource under the sun.  If you accept that there is a chance you will run across someone who is just a troll and that some people thrive on just causing controversy, and you can recognize those types, you will find that the place called the internet is one heckofa resource.

Want to help but do not know (or trust) a charity?  Chances are someone you know is doing a fund-raiser for a cause, a disease, someone in need.  If you spend your time just giving to these online fundraising efforts, you will feel pretty good each week knowing you made a difference in helping a friend hit their goal.

So when you are feeling pretty low and are trying to shake yourself off a funk, you probably do not have to go further than your lap top to start on a road of feeling better.  It’s bad enough that whatever we have we cannot take with us, at least find some happiness today because today you can do something about it. Worse case scenario, go to YouTube and search for puppies, kittens, or goats.  You will find your smile again.

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