DIY Be Warned, Be Careful

Years and years ago, when the insulin pumps fist came on the market, is the first time I heard the initials, or phrase, DIY. Do It Yourself. Many people with certain skill sets have taken it upon themselves to work at problems facing their loved one utilizing diabetes management tools. CGMs, Insulin Pumps, Fitness watches, and even medications are being experimented with to better manage a loved one’s diabetes, in most cases type 1 diabetes.

Sone of these DIY attempts have turned into full fledged companies trying to solve a problem. Many of these attempts come with disclosures that what is being proposed has not passed the litmus of the FDA for approval of the technique, the attempt, or the medication. So the user assumes all risks that the DIY world offers.

Now I am 100% fine with people hacking into system to connect devices and people for the benefit of obtaining the up-to-the-minute issue being needed by a patient…….but as more and more of these type ideas make their way to the mainstream, the cautions that need to go with it are becoming less and less. This is most evident in the medications being taken. Some medications are not intended for people with type 1 diabetes and many have that fact printed all over the packaging. But still, because the meds are able to help with the body as it deals with insulin etc., some have figured ‘short cuts’ to help manage their T1D.

At the onset of these projects, the users self-medicates and monitors themselves as they become their own lab-rat to see how the medication can hold optimum impact. And sometimes it works. HERE IS THE CAUTIONARY TALE: The more it gets used and meets with some success, the less the ‘warnings’ accompanies the treatment. This is bad. Very Bad.

DIY can be very useful, my only purpose for today’s article is to remind everyone that no matter what you are doing or trying ‘off-label’ PLEASE make sure you know all the details and risks. Do your homework and ask a million questions. I have heard, in recent times, that going off label with meds that many seem to be doing more and more, almost cost 2 people their lives. There may be a thousand reasons why this happened and many excuses as to why anyone would even try this. If, and that is one big IF, you choose to DIY on things diabetes related—–PLEASE do your homework.

Then do your homework again before engaging. There should be no scenario you have not heard, or are not aware, so you know how to react should tings begin to go sideways.

Be careful, we need you around.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.  Tagged diabetes dad,  diabetes inspiration

Dear US Senate—-Insulin–the fight of our lives

Take a look at the video below
For the sake of my 2 children and all of yours—-please share this PSA with both your US Senators and contact lists. Tell them this means giving our loved one’s life back. Please share.

Contact your US Senator, tell them to watch this video and tell them how much it means to you.

I am a DIabetesDad
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Before the Sun Rose, Others Fought the Diabetes Fight

As so much seems to be happening in our diabetes world from management tools, to biological advances, to even hints of that ‘C’ word again occurring within the hope (and perhaps, some hype) throughout the diabetes community, it is always important to remember that the world we live in has been built upon the shoulders of so many who have come before us. They, with usually just a small alike thinking group, always believed in one thing……diabetes will just not do.

Change needed to happen.

Long before the world looked at those celebs with T1D to help get the word out, the wonderfully talented late Mary Tyler Moore and her beloved JDF/JDRF led an army of parents, children, and professionals storming Washington’s Capitol Hill to tell their personal stories of living with T1D. A major A-Plus celebrity took the time and effort to join alike individuals to raise their voices to be heard.

Before new, improved, and modern management tools were fully utilized and/or even understood, the beloved late Dr. Andy Drexler taught that using these tools for intensive insulin management was needed not only for everyday use, but also for successful pregnancies. He was among the most prominent practitioners of his time. Originally in New York, he and his trusted colleague Carolyn Robertson APRN, MSN, CDE took their practice to the West Coast until his death. He was an icon.

The late Dr. Richard Rubin, with a son and sister battling T1D, became an associate professor of medicine and pediatrics for The Johns Hopkins University. Dr. Rubin spent his career helping people with diabetes and their families manage the emotional and psychological challenges at a time when the psyche of living with diabetes was not much more than merely a phrase. And few had as much courage to ‘blog’ or write about these psyche issues than Scott Strange, who we lost in 2021. Scott and Richard set both the bar and the groundwork to sharing information regarding the psyche of diabetes.

There has been a huge long list of those who have been trailblazers with information, treatment, advocacy, philanthropy, and advancements in a world where each had the same single belief that the world around them could, and would, benefit with just not doing nothing. They did not stand idly by and they were certainly not content with the status quo in a diabetes world.

So remember that every single thing, EVERY SINGLE THING, that you notice in your diabetes world, did not just happen. Those who took on the challenge never knew that their actions would resonate throughout the world. They were just an individual, just like you, but decided that the world needed change; let’s remember ALL of them. As Margaret Mead was quoted years ago, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.


I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.  Tagged diabetes dad,  diabetes inspirationMary Tyler Moore, JDRF

Even in Death, One Finale Gift of Love

My sister passed away this week, she was seventy-one (the picture above is how I will always remember her). She was the oldest of six kids and I, the youngest, but only seven-and-a-half years separated us. When a baby, she would feed me and marveled as I skillfully added bread, spaghetti, and meatballs into my milk only to drink it (sorry, yeech). She was my Santa Clause and I, her Little Elf (later she would call me L.E. as not to embarrass me). Now at age 63 it made my day when we would speak on the phone and before hanging up I would say, “I love you”, to which she would reply “I love you more L.E”, every time. Under most definitions, we are all a close-knit family. JoAnne was a mom to six kids of her own and grandmother to thirteen. My sister was not perfect and for the rest of this story, kindly recognize this fact we all know to be true. Let me also say that I cannot begin to thank the so many people who reached out to our entire family since we shared this news, it is so greatly appreciated.

My sister, passed away suddenly.

Why this is an odd statement to say is because for at least the last third of her life, my sister was paralyzed completely below her neck, a victim of multiple sclerosis, commonly called MS. She had many ups and downs, but always came through. Even when admitted to the hospital, coming back out was usually not that far away. This most recent stay in the hospital would be different and a decline started, would quickly get worse. As she was being prepared for some scans, she passed away as they got the equipment ready. My niece, Meaghan her daughter, was with her and in this world of COVID, not dying alone is a welcomed gift. The final end would be listed as cardiac-arrest, in essence, JoAnne’s earthly body had just had enough.

In the story from the bible of Job (pronounced Joe-b), Job is tested beyond human comprehension; death of loved ones, pain inflicted, disease inflicted, problems, trouble, and more. And yet, Job remains faithful to God and never once complained. If ever there was a modern day story of Job, my sister would be cast in the lead.

MS comes in so many degrees of severity and as JoAnne stated to me once more factually than complaining, “THIS is the lottery I win”; to be given the worst form of MS. You see my sister never, not once, ever complained of her situation. Many, many people she dealt with, turned their backs on her, both personally and professionally and they will now live with that burden. Because she proved naysayers wrong, time and time again.

Living by herself, service providers who said she could never live outside a facility alone were proved wrong as she was granted her independence and lived in her apartment, with her trusted service cat, Selene. A black cat with such a heart and positive force that one would swear she alone would break the stigma of black cats every. Caretakers would come and go but never once would JoAnne grant the permission to give up her independence. Her son, a wiz on anything that runs through the walls of a building, created practically everything to be voice activated because JoAnne’s mind and voice, despite a completely compromised body, remained sharp as a tack.

Traveling by plane, attending family events, attending milestones in both her own children’s lives and her nieces’ and nephews’ lives, seeing her beloved Barry Manilow in concert, meeting her idol “C.C.” Sabathia on the field of Yankees Stadium; JoAnne was going to let MS stop her from nothing……that attitude would guide her life. When my mom and dad passed it was not even a thought that she wouldn’t, or couldn’t attend their funerals. As the services ended at the cemetery, the order to wheel her closer was given, and she would pay her respects and thank them for all they meant to her. “God gave me the strength and mom and dad showed me how to use it”.

Many medical professionals would offer a course of action, and if she disagreed, she would fight them until one was convinced on the correct course to undertake, many times, hers. “I know this disease and I know my body”. Many family members would advocate on her behalf, and most times, it was the right path to take. I have many stories how people tried to take advantage of her, her position in life, her needs, her position, and those stories would be accompanied on how they were dismissed, each and every time. But on those whose actions could have, and might have, devastated those not as strong; JoAnne refused to say one thing negative. Not most times. Every time. She would defer the comment and say something positive about the person without fail. She would also remind all how God knew what he was doing, and so many had it worse than she. Being negative was not allowed and ‘no’ was nothing more than a word.

Her children wrote such beautiful stories as they remembered their mom this week. Each one emphasizing just how strong she was and how, each one, had a specific trait/attribute in their life they now hold due to their mom, well, being their mom.

She always and in all ways took a huge interest in her Goddaughter’s type 1 diabetes. When we spoke she wanted to know the latest and greatest in research for my two kids as well as trying always to hear about the advancement of science discoveries. Her MS and T1D being autoimmune diseases, she would share that helping medical research in one disease would surely help the other. “Autoimmune is autoimmune. Although different in their autoimmune properties, there are parallels, and there is cross over”. And of course, she was 100% correct.

Recently, she would be taken to SUNY Stony Brook Hospital one last time. And as I spoke to her daughter this week she informed me that mom was not leaving Stony Brook as she had donated her body to the worldwide education facility known for research with instructions to study her, study her MS, learn from what she lived with, lived with indeed, and use it to help others with MS and beyond.

So my sister’s last act on this earth was a gift so huge, herself. Organ donations are so needed and to actually say ‘here, take me, and use me’ is one huge final gift of love. Not surprising coming from one who lived her life the same way………a gift of love. Thank you Santa Clause, I will love you more forever. Love your L.E.
I am a DiabetesDad

More than Words, Thom would want Action

As we end this 2021 and begin 2022 I sit staring at the sky with amazing clouds cutting through like huge cotton balls on a jet-blue background.  I’m trying to find the right words.  My normal final two columns each year are usually a take on ‘Twas the Night Before Christmas and a Goodbye column to the end of the year welcoming the next, all with a diabetes ‘flavoring’; but to be quite honest it’s just not there.  My heart aches, my heart pains.  Earlier this month we in the diabetes community suffered a major gut-punch and I just feel the need to address it.

Like everyone who knows Thom Scher (the CEO to Beyond Type 1, for those who do not) I was beyond devastated at hearing about his death while he was in New York City on business.  He was too young.  He was too bright.  He was too good. He was everything one would say that now results in the complete loss that he is gone.  Many, many, deserving accolades have been stated, written, and spoken by so many.

 But Thom deserved more from us.  Thom would expect more from us.

In his very short time, not only on this earth but as part of our diabetes community if Thom taught us anything, he taught us that; YES! There is a way to do that, makes anything possible. When I read that Beyond Type 1 and the JDRF had come to an agreement to form an alliance it was a trumpet call to the world……..find the ways to work together, not the way to say no.  Then, again, with ADA.  And many others as well. That is how Thom worked.

Thom was not just a believer of the whole entity being larger/better than the sum of the parts, he believed that ALL the parts make up the whole.  When you see that organizations such as Tu Diabetes, Diabetes Scholars, Jesse was Here, JDRF Alliance, ADA X BT1 Partnership; and programs such as expanded sites into different countries/languages, advocacy initiatives, type 2 community, and more, all now fall under BT1’s banner, it truly is a testament to how Thom worked.  The way Thom and I really came to know each other was with the programs on the missed diagnosis of T1D.  Since before Reegan’s Rule and other initiatives, we worked closely to see the stage set for BT1’s efforts.  In one of our conversations Thom looked me square in the eye and he said, THIS will be in all 50 states, I promise you that. And it very well will happen.

A while ago when we met at a conference, someone came over to us and I introduced Thom and he immediately honed-in to find out who this person was, and what he could learn.  When asked the question he was asked many times, did he have anyone in his family, he began to answer and I cut him off, “You no longer can say you have no one in your family, in fact you have one of the largest families I know.”  He assured me that moving forward his answer would be amended.  My family, your family, the BT1 employees’ families, his friends and their families, the Diabetes Community, Thom most assuredly now had much family who lived with diabetes.

But now Thom has left this world.  His visions need to carry on, must carry on.  And THAT my dear friends, is on us.  In his short time did we learn that working together on……….well……anything is possible if we only have the desire to do so?  Did we learn that, yes, we all have objectives but the Venn diagrams of all our existences have enough overlap of commonality to build GREAT things.  Did we learn that, I surely hope so?  But what will we do about it?

How my heart goes out to Thom’s Family and all who knew him and loved him.  My heart so aches since the day I received the call.  As we go into 2022, my pain must be turned into action.  There is no way on this living earth that Thom Scher would want anyone to be looking/walking around in circles asking what is next?  He would challenge us to get off our butts and get moving in the right direction forward.  I pledge that to you Thom, I owe you that.  And so, don’t we all?


I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.  Tagged diabetes dadThom Sc.her, diabetes inspirationjust don’t do nothing


November is over. Did you miss it? Did you do something for diabetes awareness month? Did you need a reminder that diabetes is in your household?

I get it. So many believe in the ability to celebrate a good life despite/in spite of living with diabetes. A time to let the world know, and help diabetes awareness, for an entire month. What a concept.

Not to me. November is the same as its 11 colleagues that make up a year. I celebrate, educate, advocate, and hopefully inspire (a little) 365 days a year. Telling someone who lives with diabetes that there is a month totally dedicate to diabetes awareness, the answer you will most likely hear is, “Thanks but no thanks—-I live with it 365 days a year.”

It’s nice that some roll out diabetes awareness month as is done with holiday decorations and celebrations. But in truth, we choose to celebrate our kids every day, a special month is not needed. What our kids do all year round is worthy to celebrate all year round.

It’s nice that some roll out the advocacy for diabetes causes during the month of November. But in truth, we choose to fight for the rights of those living with this disease every day we can. Insulin costs, rights, and the ability to have what everyone else has gets a full court press all year.

As I stated it earlier…..I get it……I really do. Blue, new, you, and what’s due are the voices loud and clear. Let’s just push as hard all year long. No matter how small or how large, “just don’t do nothin”—-but do it all year long.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.  Tagged diabetes daddiabetes inspirationjust don’t do nothing