Holidays, Diabetes, Your Child, Relatives — Feeling the Stress?

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So you are home enjoying the holiday preparations when your doorbell rings. You answer the door and the deliveryperson is there with a box from a relative. The size of the box surely peaks your interest and you carry your new found delivery to the kitchen table and carefully open the box. As you open it you see the contents inside: a load of goodies that sort of resembles the picture; what goes through your mind?

Options:
1. What a lovely gift, so nice of them to think of us?
2. They know we have a child with diabetes, why would they do something so hurtful?

Which one did you choose?
If you chose the first one, go about your day.
If you chose the second, pull up a chair.

If you chose the second, your feelings are real, don’t just push the aside. We, as parents, are constantly asking ourselves, “Why do others not understand what we go through?” With the upcoming holidays, people will say and do things that, very well, might enrage you with their actions or words.

Since you cannot do anything to prevent people’s words or actions, you need to create a buffer for yourself or you will be pulling your hair out before the turkey cools. First point; I have learned after 27-some-odd-years at this that no matter what the words said or the actions done, believe it or not, people’s comments are because THEY THINK they are helping.

When any of these occur, which of course, are usually said in the presence of the entire family:
>We are having gravy, sweet potatoes, mashed potatoes, and stuffing and I know little Susie has to be careful of carbs so I cooked her her a stringbean for dinner.
>Kids help yourself to the cookies and candy but remember Little Johnny can’t have any…….Johnny I have a Ritz Cracker with cheese for you.
>Oh Honey (being said to you) are you sure she should eat that with her disease?
>I have candy canes for each child and Johnny I know you cannot eat candy canes, so here is a beef-jerky to chew on.

Okay—-over the top, I know, but if you read these and smiled a little, you are on your way to realizing how you handle the clods when they say the wrong thing. Do not feel the need to correct them with a lecture at this time (and you’ve already nixed hitting them with Christmas Tree branch with the angel on it) but with a few words and a genuine smile you will accomplish your goal. “Really it’s okay, Johnny knows how much of the candy cane he can eat….please give him one too.”
“Dinner will be fine, we’ll help little Susie, thanks.”

Short and sweet. If they do not know the right thing to say or do before you arrive for the holiday festivities, I promise you they are not going to learn it on the day the family is gathering. SO YOUR JOB is just to diffuse the situation and move on. Don’t see ‘Christmas Red’ because of a stupid statement because here’s the thing; it’s not as important for them to know as it will be important that you and your child know. And even more important to know that your child is, once again, reminded that you have their back.

If they see you getting upset, they will too. If they see you getting angry (and hear me on this) they will think they are causing the strife and not your family member. It will impact them as well, THIS you do not want, ever!. Take the high road. Smile. Be straightforward, direct, But make it quick and move on. If you do this, YOU CONTROL THE SITUATION AND THE OUTCOME. And THAT is why you will feel better about the situation, and yourself.

In our house, we love the Christmas Holidays. They are a BIG deal, My daughter, since the day she could unwrap a Christmas gift, truly and honestly gets excited about opening gifts——even her stocking stuffers. Her face is priceless and genuine when she opens her gifts——she has ALWAYS been this way for all 29 years of her life. When Jill or I were feeling that ‘Christmas Red’ coming to our face, we would think of her eyes, her face, her smile—–THAT WAS IMPORTANT to us to maintain, no matter what. And no idiotic or misguided statement/action from anyone was going to ruin that.

You may not succeed right away but in time, your persona will take on a confidence that will demand that everyone check with you privately and in the correct one-on-one setting it needs to be. Jill’s very presence in the vicinity of my daughter (and then later adding my son also) demanded that anyone wanting to know anything diabetes related ………..came to her first. And they did!!!!!!

This came about because Jill has an electric smile, but when she said something about our children’s diabetes lives, one knew, quite frankly, it was law. I promise you, you will get there but don’t give into just getting angry, because you will get frustrated, and feel like you are not in control of the situation. You cannot do anything about what people say or do, but you can do something how you hear it. So when the Grinch shows up, you control the outcome—hold up a piece of mistletoe and kiss them on the cheek, and let them know who is in charge.

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

Our Back-ups had Back-ups

When Kaitlyn was first diagnosed, and the credit for this falls squarely on Jill, our back-up plans for Kaitlyn’s diabetes had back-up plans. When it was her glucometer, there was the one she carried, the one in Jill’s pocketbook, as well as the one in the car. There were always three different angles to the end game on anything diabetes. Interesting enough, over the years, the approach changed little.

I would strongly suggest that every parent consider the same strategy.

No matter what we have used, no matter how technology has changed, there was always a back-up plan…….for even the back-up plan. What that plan might be is entirely up to you and your family, but if you have a dollar to bet on anything doing with technology, bet on this one fact……it will fail.

Do not wait until it fails to be prepared.

When the technology stops, the ingenuity must, MUST, kick in. What was once a relayed signal from the cloud might become a manual glucose check and a phone call or text. What was a working glucometer, becomes using a spare one just in case. What was an insulin pump dosage, becomes an injection.

There was much online frustration relayed in our community with the recent Dexcom failure to transmit information. People were saying all sorts of things; how others should feel about technology, and what they should not feel, and what right anyone has to have such feelings, or not have. People became angry at others and felt people should mind their own business and not tell others ‘how they should feel’.

In my opinion it should come down to one thing, and as I stated, credit my wife; when it comes to anything diabetes, your back-up plan needs a back-up plan. Whatever that is or might be, I leave to you and your family. But if you do not have a back-up plan to your back-up plan; you will one day experience the panic of ‘not knowing what to do’.

And that’s not a good place to be. Plan now for the next time because I most assuredly guarantee…….there will be a next time.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

No 2 are Alike

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So as we approach our third ‘winter’ in South Carolina, I am reminded of the one thing I do not miss about living up North……..snow. I was never a fan of snow. It always looks beautiful and then the reality hits that those beautiful flakes will not remove themselves from your car and your property.

The one thing about snow that I always found fascinating was that, as the saying goes, no two are alike. Millions and millions of snowflakes and each as different as the next. This was my assessment of those with diabetes for years. I even called it the snowflake disease as how it impacts one may be completely different with someone else……and in many cases it does impact two people completely differently.

Remember that the next time you want to jump in and help someone with a diabetes inquiry. The way diabetes impacts your child could be 180 degrees different than how it impacts someone else. But withing this discussion is also a celebration of how people move beyond the limitations of this disease in their own lives. Just this week, one young man made the junior Olympic team, one starred in a football game, one danced the Nutcracker, one entered medical school, one is graduating Family Nurse Practitioner school, one went away on their first weekend without mom and dad and ALL OF THEM did it with diabetes.

So as we head into the holiday season, celebrate the uniqueness of your child. Celebrate that what they do, and remember that they do it while managing a truly tedious disease. A disease they did not ask for. A disease that was thrust upon them. Celebrate their uniqueness. And while your at it, give a pat on your own back for all you do to help them.

No two snowflakes are alike. And neither are your children. Their uniqueness is worth celebrating……in fact, it melts your heart, doesn’t it?

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

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This Month, ‘Diabetes’ Gets Nothing!

Dear Diabetes Awareness Month,

Sorry I have not paid you so much attention this year. I mean I certainly continued the advocacy I find so important. People need to be made aware of your signs so they can get proper care before it is too late.

I am also not letting you off the on letting insulin prices go just as high as they want; we’ll keep fighting that too.

But I am spending my time enjoying the things you cannot keep from my kids. I visited Minnesota this month and shared with my son his new digs at the corporate offices of Best Buy. You know, the place he could not get to because he was too young or his diabetes might get in the way. Yeah; that didn’t happen and now as he approaches his second year, we continue to be so proud how he and his fiance are doing out there, so sorry I was not dwelling on just the diabetes that week.

Oh, and also sorry that I could not spend more time with you in the middle of the month as I had to visit Kaitlyn; you remember her don’t you? You know the one diagnosed at age two, the one where one medical professional told me I should be lucky enough to hope for just getting through college. Never knew if they meant that diabetes would be so hard she would be unable to balance it with her studies or that she would be alive at this point……….well she graduated college. Graduated nursing school too. Next month she graduates as an FNP—or Family Nurse Practitioner. Take that!

Always surprised they named a month after you. It should be about those who, time-and-time-again, prove that diabetes will not stop them. It should be about those who have accomplished wonderful things despite having you in their lives.

They excel, they find great jobs, they get married, they have kids, they succeed—they do everything that you thought you would stop them from doing. So perhaps we should call November Hero Awareness Month, because quite frankly, you do not deserve to have a month named after you. But our kids do. And the kids we lost do also. They lived as heroes for as long as they could until they could not do it any longer……and you took them.

That’s what happens in a war. And this is a war. And all of us will do battle every day.
Some day, you will lose and we will win. Because you deserve nothing form us and nothing is what we are ready to give to you……..least of all to even have a month named for you. Better we stress the “Awareness” in Diabetes Awareness Month……and give you credit for nothing.

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

Diabetes Awareness Month……Key Word: AWARENESS

Well here we are again, Diabetes Awareness Month.  Trending are many people asking to post something each day of this month.  How many test strips do you use, how many units of insulin, how long have you lived with t1d????  Something different each day of the month.  I’m not so sure I would want to break down my two kids’ diabetes into a 30 day ‘advent-like’ calendar of what we have been doing for the last 27+ years, but if it works for you, why not?

But WHATever you are doing for this month, ask yourself this question as you contemplate what to do to bring awareness to the outside world; ‘who is seeing this?’  It’s great to show the diabetes community, but here’s the catch, they know already.  Whatever you are doing, and it’s up to you whatever that is, but make sure you are monitoring where your posts end up.  All year round we are certainly here to help one another but November offers a very specific charge; awareness.

SO encourage people who read your posts to send them to those who do not know anything about this disease.  Figure out some things to do, here are a few examples;  Encourage your kids to give a presentation in school about diabetes awareness; go to www.getdiabetesright.org and download one of the many awareness posters, print a bunch, hand out and hang throughout your community; donate to a diabetes charity, a camp, or any diabetes organization you like; ask to speak at one of your community meetings like Rotary Clubs, LIONs Clubs, Chamber of Commerce about diabetes awareness; wear blue like my dear friend Paula does all year round each Friday (my Fridays are just not the same if she doesn’t) but now you have 30 days–wear blue, and just do something to get that word out; just don’t do nothing.

This month is all about Diabetes Awareness…….so make people aware!  Not those who know already but those you don’t.  You might just save a life.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Death from Diabetes……A Small Glimmering Light has Arrived

By far, this is the hardest thing that I have been involved both in and with; on our diabetes journey and within our diabetes community.  It is hard.  It is sad.  It is reality.  And quite truthfully it just sucks.

The number one thing that occurs when someone dies in our diabetes community, is the loss of what to do when it happens.  What can we do to help?, is asked over and over again.  What to do, what is right, how to help.  Now there is something with true substance that we can all do when someone passes away.  And unfortunately, it will happen again.  My picture today is the blue candle, but I have added a glimmering light, small as it is, because it is a light that many families will need at their most difficult time, that may now be there to help.  Somewhere to turn when so all alone.

Today is National Bereavement Day and Beyond Type 1 has ONCE AGAIN stepped up, to help our community. I believe that Beyond Type 1 (BT1) is truly one of the most remarkable organizations in existence.  What no one touches…..they hit head on.  Listening to Sarah Lucas, Thom Scher, and/or anyone at BT1 when they discuss diabetes topics, you feel their passion–it becomes tangible; their actions are a force, their actions are quick, their actions have substance.

Today, this wonderful organization has partnered with one of the people I respect most in this battle, Michelle Page Alswager.  Michelle lost her precious Jesse at age 13.  Others may just give in and give up, and truthfully, no one in the world would ever blame them.  Michelle has taken her grief and reached out to help as only someone who has experienced this pain can…….she has made it a rallying cry to help others.  She has been an advocate for years to those who lost someone and, as is their custom (missed diagnosis, Tu Diabetes etc), Beyond Type 1 has stepped in to fill a void, and if you know BT1, you also know they do nothing halfway…….this is no exception.

Jesse Was Here
From their new website page:
Launching August 30, 2018, Jesse Was Here was inspired by Michelle Page-Alswager’s experience after the sudden death of her 13-year-old son, Jesse, from Type 1 diabetes. Grieving the loss of her child, and the potential loss of the diabetes community, she created an online community to support parents who had also lost their children to Type 1 diabetes. By connecting with others who shared her experience, she realized many of those seeking support and opportunities to honor their loved ones, also struggle with unexpected funeral expenses, ongoing medical bills and sometimes even the funds for a headstone. Through her efforts, she discovered many others — not just parents of young children — were looking for peer support, practical information, coping tools and financial assistance. Working together, Michelle and the team at Beyond Type 1 are creating a very special program to serve this unique and deserving community.

Keep this as a resource because, the painful reality, it will be needed.  While you’re at it, give a few bucks to them as well because in reality, they can only help with what they have.  If you have ever asked, How can I help that family?—-now is your chance.

Truthfully, I hated writing this article today because it just reminded me of just so much pain I have seen others go through over the years.  But it is comforting to know that people like Michelle are not afraid to walk-the-walk, and organizations like
Beyond Type 1 are not afraid to listen, and step up.

It is what makes being part of the club none of us wanted to join; a little more bearable.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Diabetes Disaster Response Coalition is Activated—Hurricane Lane

The Diabetes Disaster Response Coalition was created after years and years of people wanting to do something, AND DOING SOMETHING, but without a cohesive effort so the entire diabetes community knows what to do in the time of disaster.  This is the only time I will speak in general terms about this group…..moving forward, when you see the logo, it will be an indication that there is an update as this column will be turned over for information about a particular disaster.

During times when you want to help, go to the Diabetes Disaster Response Coalition FB page for up to the minute information on how to help.  There is a great body of people involved on this Coalition co-chaired by Carol Atkinson (Insulin for Life/USA) and Kelly Mueller (American Diabetes Association) because that makes sense.  There is a lot of things making sense with this group.  At some point I will fill you in on who is involved but let’s get right to the nitty-gritty with information on what to pass along to your family and friends in Hawaii who might have diabetes concerns.

The most important information is what YOU NEED to do to be prepared to handle your (or a loved one’s) diabetes care during the upcoming storm:
CLICK THIS LINK FOR PATIENT PREPAREDNESS

1. Documentation. Write down type of diabetes you have, other medical conditions, allergies, and previous surgeries. Include current medications, doses, and time you take them along with your pharmacy name, address and phone number.

* Prescriptions. Ask for an extra supply of all medications, including insulin and Glucagon, if prescribed. During an emergency, you are eligible for an emergency override. Call your pharmacy, if they say no, contact your healthcare provider for an altered prescription. Warning: Insurance may not pay for the increased amounts.

2. Insulin. 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. 3. Shelters. A live map of open shelters from the American Red Cross can be found here. You can also contact the American Red Cross directly at 1-800-RED-CROSS. If you find yourself in a shelter without proper diabetes care and supplies, call 1-800-DIABETES.

4. Statewide Updates. Emergency updates and other resources can be found here. Hawaii Emergency Management Agency. http://dod.hawaii.gov/hiema/

The Diabetes Disaster Response Coalition FB will be updated as needed.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

CGMs Upon Diagnosis Moving Forward? Thoughts?

I’m sure there was a time when people were dealing with their diabetes; and were used to peeing in a cup, boiling water, dropping in tablets to match a color chart, and check the color of urine to see how much insulin was needed, they were content with the procedure because it was really the only choice. You did it this way because that is the way it was.  And along came a study that showed close control of blood sugars could help enhance the life style of those with diabetes and even prolong lives.

What happened?

Well the pharmaceutical business EXPLODED with devices and treatments never seen before in our diabetes world.  What was a 30 minute process, minimum, was now being done in 30 seconds…….but there was a catch.  The individual needed to harpoon themselves 4-8 times daily to produce a drop of blood used to measure the glucose when applied to a strip attached to a meter.  That was the tradeoff.  It was better and faster but to the individual, was it ‘better’ to stab oneself in the exchange of faster and more accuracy?  That is the way it was.

You see if you have been around in this diabetes world twenty years or less, you really do not know anything else but glucometers as THE DEVICE to use.  You became used to ‘harpooning’ yourself because that was the way of the world and you were taught nothing different.

What happened?

An all-out war broke out in the pharmaceutical world to be the fastest meter, the most compact meter, and the most accurate meter.  And work began to improve upon ‘the norm’; to make it so no blood drop was even needed.   A way or a means to check one’s glucose constantly and on a device where the information was sent electronically, constantly……..like predecessor management tools, it seemed like a dream come true.   But it happened and the continuous glucose monitor (CGM) is now a part of our every day life……..for some.

“I do not want to wear something all of the time?”
“I’d rather do it the old-fashioned way with a meter.”
“Being attached does not seem right to me.”
And if you did not always use a CGM……that is your call.

But we bought up a generation of kids who knew nothing else when it came to harpooning themselves to obtain that drop of blood…..it almost seems archaic, doesn’t it?  But they surely accepted it as ‘the norm’.  It’s time to bring up a new generation of kids.  Kids who know nothing else but wearing a CGM………because it makes sense.   The glucometers are becoming less and less and more people are on a CGM than ever before.  Sure we need glucometers, but now they are mostly a back up.

It makes sense that there is something that can alarm when you are low and warn you.  It makes sense to have a management tool almost the time you are diagnosed that can help prevent those swings from low to high and back low again that leaves the person with diabetes feeling like that they are in a spiral in all sorts of directions.  It makes sense to wear something that checks one’s blood sugar constantly.   I’m sure when the choice was to pee in a cup instead of harpooning yourself, it seemed likely to stay with the old way, it was easier………but we now know it was NOT better.  Was it?

It’s time to once again challenge ourselves with something better and not necessarily easier. A CGM should be given as soon as a diagnosis occurs.  We need to ask those questions once again?  From the moment one is diagnosed.

What do you think?

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

Parents: Look at it From Your Child’s Point of View

Me: How often does that happen?
Teenager: 2-3 times a day.

Now I will be the first one to admit that we did not have the luxury of a CGM sending  our child’s glucose numbers to our phone nonstop when Kaitlyn was diagnosed year’s ago.  What happened in the discussion I was presently engaged was that the young lady’s phone buzzed and it was her mother asking her what she was doing about her perceived low, her dad called 30 seconds later.  Both parents called and I was informed it occurs 2-3  times daily, minimum.

Really?

How low are you?
I’m not really…….70.
Did you all ever set some sort of  plan about this?
No, once I go below 80 my phone starts to ring.

Uhhhhhhmmmm……..no, I said to myself.

Unless, at some point, you want to deal  with an explosion and have an absolute revolt on your hands as the pressure cooker inside your child’s head continues to heat up every time you call them, you might want to reconsider a few things.

I get it.  Concern.  Worry.  Fear.  But how would you feel if you were contacted constantly as big brother watching becomes mom and dad asking (or texting), ‘what’s your number, what are you doing about it?’  You would not like it and I can most assuredly let you know, your kids don’t like it one bit.   One mom told me once that her child found it reassuring that she could monitor her and call her constantly.  That scenario just does not add up in my head and ring true to me.

When it comes to these type scenarios, my dear late friend Dr. Richard Rubin’s voice is heard loud and clear.
Choices……boundaries.
With today’s incredible management tools, a conversation needs to occur between you and your child. Discuss that you are their back-up.  Discuss the parameters when you will call (not so sure 70 is the number to discuss as in the scenario mentioned above) them to check that they are okay.  Use this modern technology to enlist a system where one parent calls, one parent contacts the other parent when they know all is back to normal.   Having the nurse, one parent, another parent all serving as drones and hovering over a child is too much.

Trust me.

When my oldest child (without diabetes) received his license, I made it very clear.  Here is how this works; if you tell me you will be home at 11 and your are not, I begin to  think something horrendous happened to you. I can’t help it, I’m a parent.  The freedom of a car is all yours but help me and call me and tell me when you’ll be late.  Do that and I’ll be fine.  Should you not call and you come in late, there will be a discussion.  But he now knew the parameters, the boundaries were set.  And it worked.

It’s no different with your child and diabetes.  If they want the independence to deal with this disease on their own, you WANT to help…..but all must work together.  I do not want to tell you what those boundaries are, you all set them.  It will not be perfect, there will be some adjustments; but if you’re following every move your child is making and you let them know you know every step they are making—–how do they learn?  A recipe for that revolt already mentioned.

They will get older, they will go to college, they will move away.  They will have to figure this all out on their own.  Going from being a constant drone to doing nothing is no good either.  Yet, I constantly hear from parents who tell me that once their kids left for school it was so hard to communicate with them.   That’s the key.   If you are “all over them now” you are not communicating; you are dictating.    THAT’s not healthy for you or them.

When it comes to all of these great management tools, communicate, set parameters, and balance are also tools to add into their diabetes management toolbox.  It’s their disease, help THEM own it.   Trust me, you will all be better in the long run.

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

When it Hurt Too Much to Write

Hi there.
It has been a while since I wrote, but I’m still here.
One of the happiest times in my life was discussing my articles with my mom.
She was my sharpest critic but make no mistake, she was quite proud of the forum I now have.
My mom loved to write….she always did.
When I started this column she took great pride in the work and she loved that people were responding; there was a reaction.  Mom like that people commented.  That I made some friends and that I pissed some people off.  She said writers should not be friends with everyone.  “Never forget that”, she would remind me.

And all of a sudden………she was gone.  May 19th.  The Friday before the Preakness, she was picking the horses she would instruct my brother to place her wages.  And she would go to bed never to awake again.

Shortly after she died I rattled off a few columns.

I was proud of myself for writing some well received columns.  I can do this, even though mom is gone, I can do this.  I kept telling myself.

Uhm……..nope.   Almost instantaneously, the desire to write was gone.  No matter how many times I sat at the keyboard….all I could do was stare.  A few times, tears rolled down my cheeks.

Many times writers write not even knowing if anyone is even reading…..not too unlike a radio DJ talking into a microphone not knowing if there are ten thousand listeners, or not even one.  Nothing came to me.

My mom was the most incredible person and when she would like something I wrote, she would say, “That was really just from you.  It was your heart talking.”

So I sat down at the keyboard tonight……..and I wrote.

It’s just me, a DiabetesDad……..and his heart talking.  We’ll see where it goes.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.