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’.

Is SUCK IT UP too Rough to Ask……..What’s the Alternative?

I’m not so sure if it is the social media being so readily available or if people just like to gripe more……..not exactly sure which it is.

I read people who are so exhausted because they stayed up all night………….again with a child’s low blood sugar; I read people who are distraught because they hide in the parking lot so their child can partake in after-school activities; I read people who have had their life turned completely upside down because of their child’s diagnosis of t1d……..yeah……..and?

Children being diagnosed with diabetes is not a brand new ‘thing’.  It’s been happening for a long, long time.  Do you know what the next step was, we dealt with it.  Plain and simple; whatever it took, we dealt with.  The new normal is not just what happens in your child’s life, it is what happens in your life too,  The key word here is…….normal……..albeit…..a new normal.

Now every now and again, needing to let off steam or to find a shoulder that understand you to accept your tears of anguish; is not what I’m referring to here.  It’s the ‘every-single-sacrifice’ being shared once or twice a day as to how horrendous a life has become that just seems like a bunch of wasted energy.  Any parent that had a child with this disease has had to deal with the anguish with what comes with it.  I don’t mean to sound so cold as to say, “suck it up”, but I also do not understand the idea that one’s world can never function again because of this disease.  If you do that, diabetes wins.  Don’t let it win.
(To clarify–I’m not minimizing this disease and I’m surely NOT SAYING ‘suck it up’—-I am saying that the disease should not define our lives.  As my daughter stated at a very young age, “….I have diabetes, diabetes is not who I am…..”.  My point is don’t let it define you)

We all did WHAT IT TOOK for our kids to have as close to a normal life as possible and for the majority, our kids never knew what we did to get them there.  And if our kids never knew it, we certainly did not live our lives online.  I get it. Diabetes sucks…..it sure does.  But what sucks worse is when you show that it controls your life………because if it looks like it controls your life, it does control your life.

Kick it in the butt out the back door.

Now as I said, every now and again, we all need  release and a melt down and surely we earned it when that happens.  But not a constant defeat.  Not a constant life of woe.  Your kids will pick up on that faster than you think they will.  Many of us have always lived by what they do after diagnosis is what they would have done before diagnosis.  Adjustments? Sometimes but get your child in the game, in the play, in the after school club…….challenge yourself to get them there without anyone knowing what you did to get them there.  It’s about them.

Hey things could always be worse……….you could have two kids with t1d. Did that, done that…….and you know what……..we lived by the same philosophy…..try it.

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

Editor’s note: Updated for clarification at 8:00 pm on 8/10/19

Worse than Falling Off the Horse………I Missed CWD FFL

I have successfully landed in the land of physical therapy and am officially ‘post-op’.  At an eventual time in the not too distant future, I will land on my feet again….hopefully better than new; or at least better than my pre-op status.

I have learned that I’m not a good patient.

I find it hard that people have to do anything for me.  I was never good at it, and will never be.  I have always called myself a ‘give a gift’ type person, not a ‘receive a gift’.  The very idea of not being able to do for myself is worse than the operation itself.  Someone else cutting my toe nails makes me cringe beyond measure.

I was operated on Tuesday, June 25th.  It was my second operation in several months (I really did not fall off a horse, time just has worn away my knees leaving nothing but excruciating pain).  The first was pretty standard on the right knee, just minor. The pre-op MRI of the left knee showed that it was going to be a tad more difficult than one’s normal knee-replacement.  The standard 90 minute operation rounded out at just past 4 hours.  All is well but recovery would be long and I’m barred from airplane travel for months.   Easy for most, but I live in airports.  And LOVE doing what I do because all of it takes me to people who are doing wonderful things in our world of diabetes.  For my kids, for your kids, for you.  So being told I was grounded has been tough.  So saying, “stay off planes” is so much more than it sounds.

Originally I had the planning of the two operations perfectly planned leaving enough time to ‘get back in the saddle’ with plenty of time to spare.
Uhmmm…….no.
The worst part was when it became clear to me that CWD’s Friends for Life (CWD FFL) would have to be missed.  No one will ever know how crushed I felt as that realization set in.  As honestly and plainly put as I can say it, my kids are alive today because of what we learned at CWD FFL over the many, many, many years we/I have attended.  It has been my lifeline for years and anyone who knows me, also knows that fact.

The only thing worse was making that connection to Jeff and Laura informing them that I would not be attending. That would be the facing the reality that I was not going to be there, real.  After I let them know, I stared out the window for a long, long time wiping the tears off my face.  It was made a tad easier once the conference began and it was great to hear from so many during that FFL Conference week.  From the conference perspective, my absence was surely nothing more than a blip, if even that.  But TO ME, a piece was knocked out of my heart to not be in attendance.

As I recover, I think of so many who are going through such worse things than my present position and it shuts my mouth and keeps me working harder on what I need to do to get past all of this.  My body was saying…….this is the time to get this done, so I listened.

I’m almost self-sufficient again being less of a pain-in-the-butt to Jill, who has been nothing short of an angel caring for what I could not do for the time I couldn’t. I get stronger each day and continue to work at what I need to work at pushing the envelope; just enough to move ahead quicker but not do more damage in the process. I thank the so many who sent such warm wishes over the last month or so.  Your encouragement and caring words truly carried me through this, and I honestly share with you how important it was to hear from so many. I tried to stay low-key about this whole thing, and if you are reading this and not knowing what I am talking about, good, it’s really how I wanted it.

There is so much to do and it’s good to be ‘at it’ again. Too many people need advocacy, education, and a cure.  So onward.  And again, thank you for caring so much.  Let’s get back to work.

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

When Life Takes a Drastic Downturn

 It’s a very humbling experience to be placed in a position that everything that you need to do….for you…..must be done by someone else.   Such was the case recently, the particulars will remain private but the bottom line, I was left in a state that I was completely at the mercy of those around me.  A 90 minute surgery went 4 hours and after that point, we were off to the races.

I will (eventually) be better than I was but I must share there is surely something bigger than us out here and when they decide to step in and play havoc…..havoc will indeed come in and play.

I have been on my own sinceI  was 20.  I’m self-sufficient to the point of stubborn and when you get to a point and your body says, ‘Nope, not gonna happen”, the results are pretty scary.  When I saw the surgeon and asked, “how’d we do?”.  I learned, first of all, don’t expect a rhetoric answer unless you are sure the question is one.  “My part went fine.”   The implication’s, of course, were that someone else’s job had not gone so well……and that was the truth.  I do not do well-being done for; or people doing FOR me.  But for now, I have no choice but to allow others to do that which I cannot do for myself. I actually really even enjoy giving Christmas presents way more than receiving them.  But for now I have no choice, the road will be long, it ended up the way it did, and here we are, recovering.

So this has lent me time to think, how well do our kids, diabetes or no diabetes, realize just how much was done for them and is done for them? How much we do as parents that, dare I say, is taken for granted.  Diabetes supplies, insulin, school trips, needed supplies, “I have nothing to worry about, Mom’s got this”.  “Mom’s my lifeline”.  Really?What if life suddenly changes for/on mom?  It would impact many I’m sure.

If there is one thing I learned over the last few days, is that ‘the best there ever was’ can have an off day and THAT can impact your life forever.  The people around you are all you have and there will be a time that you will need them……bet on it.  Make sure they know you care for them because when you look at them as they cradle you and tell you everything will be all right, it is at THAT moment of helplessness you find out how lucky you are that there are those who love you and care enough……….no matter what.
I’m one of those fortunate enough to have those people in my life and I thank them from the bottom of my heart.

 

 

ADA Scientific Sessions; a Lesson in Trust

Landing at San Francisco airport, it was a fearful realization for me to watch two planes come in for a landing at the same time (as in the picture which was taken at the same airport).  It seems that they are too close together to even land safely.  There is much trust between these two pilots; so close.  Being in one of them is a tad uneasy watching them slowly descend on the approaching runway, well I find that as cool as I do fear.  I felt the same thing this week as I went down the escalator into the exhibition hall of the 79th Scientific Sessions of the American Diabetes Association (ADA) in San Francisco.

Two escalators full of people side-by-side, going down two stories right to the entrance of the runway entrance to the hall.  Trusting in the landing.  Finding out what is new, what is exciting, and what is happening around the world of diabetes is also so rewarding.  The ADA, true to form, gave opportunity for sharing, learning, and even allowing some healthy debating for the benefit of all those in our diabetes world.  An exciting flight all around I would say.

One of the most interesting bits of information, I found, was subtle but it was there none-the-less.  It seems that whoever the ‘powers-that-be’ represent, they have declared the artificial pancreas is now officially dead and closed loop, and/or automated insulin delivery, is now the preferred term.  Far be it for me to say anything but I hated the phrase artificial pancreas from the get-go and wrote about it two years ago. (Click link)
Well it seems the world now agrees.

I found it also interesting to find out at the conference that Medtronic has entered into a relationship with nonprofit TidePool, because Medtronic was supposedly the ones with an artificial pancreas. Will it be that the Medtronic 670g will slowly descend from their highly anticipated expectations. Which leads to another interesting phenomena and that is this idea of mixing and matching pumps, cgms, insulins, pens and any other devices.  More and more DYIers (Do it Yourself-ers) are utilizing devices, blue tooth, the cloud, and one young man has a start-up company utilizing devices such as Alexis, your lap top, your watch, and even the lights in your home to help you monitor glucose control.  Better Living Technologies (betterlivingtech.net) was founded by a father of a child with type one.

Gizmos, bells, whistles, and so much more to try to ease the burden of living with this disease.  At the end of the day, it will be up to each individual to figure out what will work for them.  But remember always, and be warned……..I remember distinctly that when the ‘artificial pancreas’ came out it was touted as the closest thing to a cure that there ever was…..it’s not, and it wasn’t.

Be smart…………………….and ask a million questions.

Me? I still want a biological cure……….Me? I still think we will get there.  It does not surprise me that a father of a child with t1d would invent a way to connect your watch with Alexis to control your lights to warn you of low/high blood sugars.  It does not surprise me that many advancements of late, or in process, have someone with diabetes or a loved one with diabetes involved. Maybe, more and more, these same people should be more involved with the research labs for a cure.

As I packed my bags to leave ADA, my head was in a tailspin on the amount I learned and the amount that is occurring in our diabetes world.  Thank you ADA.  Always exciting to be flying so high and coming in for a landing with trusted folks……right on the runway next to us.
I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

Why is Your Child’s Diabetes Keeping You Up at Night?

   I’m not saying that there were not times that we went through the night, I am not saying that we had our share of long nights, what I am saying, or asking actually, why are you not finding some nights to sleep?

As a reminder, my daughter was two when she was diagnosed in 1992.  No cgms, no pumps, no ‘in the cloud’ anything, and most certainly no alarms, warnings, bells, whistles, or even a muted buzz……nothing.   And still we found time, every now again, to get a night’s sleep; more than you would think.

I read more and more and more of people sharing on social media that their child was diagnosed 3 years ago (or whenever) and they have not had a night’s sleep since.  Really?   Why?  Look, surely with two kids living with this disease from ages 2 and 13 respectively I get it, but not figuring out a time to find sleep with all of the incredible management tools in existence today; I’m truly asking for your input on why sleep is so hard to find?  Help others, share.

I remember the doctor also telling us that Kaitlyn would be living with ‘brittle diabetes’, a phrase I hated back when and one I still hate today.  The meaning; almost inexplicably, her blood sugars would drop sudden and drastically with what seemed no explanation.  But we never believed that. We were constantly trying things to see if more practicability could be entered into the equation.  Sometimes it worked, and sometimes it did not.

My heart truly goes out to those who can find no sleep.  I’m not here to judge and I’m certainly not here to say you are doing something wrong.  But I see that written so often so what I am saying, or asking rather, is if you were living in absolute fear that you were not sleeping during the night after your child’s diagnosis…….and if you were able to change that somehow……..share your experience.   It breaks my heart to think people are so sleep deprived when I’m not so sure they need to be.

So please share your experience and perhaps it might wake us up a little on what needs to be done to grab a night’s sleep.   Thanks for sharing.
I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

Make No Mistake Moms and Dads, It’s Your Graduation and/or Awards Day Too!

Congratulations, milestone reached.
I always love this time of year as people post all of the great accomplishments that their child achieved.  Graduating High School, Graduating College, and whatever they call, these days, cap and gowns for kindergarten and/or middle school.  Step up–graduation?…..whatever…..your child is moving on in life.

Wonderful news.

Silently, I have always found myself to be prouder in my mind when I know someone with diabetes has reached one of these milestones.  Any child that has an obstacle in life, and overcomes it to move forward, is worth mentioning.  We see so many stories of kids who have major disabilities receiving degrees and it just warms our heart, doesn’t it?

But our kids who battle T1D, they don’t look any different from their peers, do they? When you meet them or first see them, there is no appearance of the challenges they face.  But make no mistake, they are there.  I remember the story of a parent who during their child’s graduation ceremony, noticed their young son wavering back and forth as he stood at the end of the ceremony.
“Oh, oh!”
And just in the nick of time the parents were waiting for him when he left the ceremony to give what was needed to tend to the glycemic reaction.

The photos don’t show that.

The photos show arms around family members and friends celebrating graduation from high school.  The photos show smiles and good times.  No one would look and say look what the young man achieved, even with the illness dealt with 24/7/365.  No one would say, what a heart warming story that despite; sleepless nights due to diabetes, adjustments made to play sports due to diabetes,  rearranged schedules all through middle school and high school so lunch was at reasonably time adjusting to diabetes, countless trips to the school and school nurse due to diabetes, fighting to make sure they are not left behind in school trips and countess activities due to their diabetes no one would, really, even know.

But you know, don’t you mom and dad?

So when YOUR child who battles T1D;  graduates, ‘steps up’, receives an award, attends sports night, gains entry to an honor society, is named to the homecoming court, named to the prom court, wins a race, aces a test, achieves success in the robotics club or whatever club they participate, are pinned, white coated, named valedictorian an/or just live life to the fullest—-well you just enjoy that huge smile on your face a little bit more than so many others who DO NOT understand the lives we lead.

And should it be forgotten for the moment, or not even known by outsiders, that your child has T1D at these ceremonies………we, as parents WILL ALWAYS KNOW, won’t we?  Because the fact that we will NEVER forget drives us with everything we have to make sure our kids never forget what they really are……..kids like everyone else.

So let me say to all of you parents, congratulations on another wonderful year of your child’s achievements.  Because unlike many others, your child achieved everything they did this year despite, and in spite, of their type 1 diabetes.

I know that smile, and those tears of joy, you will have on your face….and you enjoy EVERY second of it!  Congratulations.
I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

Moms

Mom.
Is there really a more soothing one-syllable word in our language?  Not really sure what the ‘role’ of a mom is, by design, anyway.  Who could ever write ‘the manual’ describing what a mom should be, or what is required?  And yet, so many are so good at it.  I’ve known many ‘moms’ in my life and two will stand out above the rest in my eyes, for as long as I live.

The first, is my own children’s mom. If you are not new to reading this column, you have heard me say before how lucky my kids are to have such a mom as Jill has been, and continues to be.  Life comes to everyone and we have seen much and also been vocal on some things like our kids living with diabetes, and many other things we have kept to ourselves.  Continuing through what life throws at you is not easy and Jill has made it as much an art form as a survival technique.  And all the while, our kids knew nothing more than a wonderful and nurturing environment.

Not easy.  From school involvement, to caring for them, to being their best diabetes educator, to being their confidante, to being strong, to being soft, to hugging, to wiping tears, our kids had it as good as it gets when it comes to mom.

This is my first Mother’s Day without my mom.  And, truthfully, it hurts. Mom demanded the best out of each of us and also taught us to fight for ourselves when needed.  Her three daughters as well as her three sons.  Equality was not a word in our house, it was a way of life of which we knew no other.

My mom was strong, funny, smart, up-do-date, and wise.  She was so wise.  Her advice was not always what we wanted to hear, but it was usually pretty spot-on.  She, too, had seen her days of pain and hurt, and she too stayed strong knowing that life always moves on.

The scales of mom’s life had everything on one side of the scale in living to be over 90, having six kids, 23 grand children, 18 great-grandchildren, traveling the world, had a successful career,  she died very quickly and not a long illness, and yet, the scales are outweighed and tipped by the one fact; she is gone.

When mom left, I was comforted by the fact that nothing was left unsaid between us.  We always ended our calls, which were many, the same way; “I love you son.”  “I love you too Moo-Moo”.  I was lucky to have such a mom as the one I had.

I miss her.

Make sure you do something special for your mom this Mother’s Day (and every day for that matter).  I can tell you from experience, the hole left behind is great heading into mother’s day without someone you loved for 60 years, and who loved you back unconditionally, just because she’s your mom.

Happy Mother’s Day Moo-moo.

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