diabetes parent – Page 2

DDRC ACTIVATED for Hurricane Dorian—-Kindly Share this Information

Posted on August 28, 2019 | by tomkarlya | 2 Comments

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

Posted on August 23, 2019 | by tomkarlya | 3 Comments

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?

Posted on August 8, 2019 | by tomkarlya | 1 Comment

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

Posted on August 2, 2019 | by tomkarlya | 8 Comments

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

Posted on June 30, 2019 | by tomkarlya | 4 Comments

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.

Lisa Awards 2019, Powerhouses in Our Diabetes World and One Special Son

Posted on June 22, 2019 | by tomkarlya | 1 Comment

Ten years are a long time. I just cannot believe that ten years have gone by that our sweet Lisa left this world. But she went out with a voice shouting from the mountaintops and it is in the memory of that voice that I keep the promise I gave to my Little Brother (honorary), Mark, that in honor of his wife I would bestow The Lisa Award each year to those who understand The Power of One.

It is given to people who, in their own way, change the world just like Lisa did. This is a VERY BIG deal to me because these award are not given lightly. They are given in honor of a woman who was not satisfied to just feel sorry for herself, she changed many lives and I miss her to this day. My friend Lisa passed away in 2009, at the young age of 36. She battled cancer longer than any doctor thought she would or even could. Through her life, I learned a hugely powerful phrase that will live inside me forever, along with Lisa’s memory: The power of one person.

Here is a quick summary of Lisa’s story, before we get to the awards.

She was diagnosed with cancer. Lisa and Mark shared their writings of her journey, in real-time, with a hundred or so friends and family members, all of whom were inspired by each word. People learned, shared, and were in awe of their strength and dedication.

And then something happened.

People who were not part of the inner circle started reading the blog posts, and those people became inspired. The hundred readers became five hundred. In no time, the number of readers rose to 1,000, then 1,500. Soon 3,500 people were following Lisa’s story at every turn, both the good and the bad. Lisa and Mark were so brave in the face of incredible hardship and they inspired others to do the same with grace and dignity, sprinkled with humor.

And then something else happened.

A TV station found out about Lisa and they ran the story on the evening news of her incredible efforts to teach others. Millions heard her story and were inspired by the magic she possessed — the determination to live life and taste every last drop was shared with millions. So many others facing trials hit them ‘head on’, inspired by this young couple.

Eventually what Lisa and Mark shared so openly, became a reality and she succumbed to the physical-ness of what cancer can do. Her spirit, though, was never defeated. The war would go on with Lisa and Mark’s teaching. Her “power of one” changes lives to this day.

This column, surrounding Lisa’s birthday month, pays tribute to those who understand Lisa’s philosophy of the power of one person. Because I’m more versed with the happenings inside the diabetes community, my Lisa Awards are given to those people who live Lisa’s determination to make a difference with the “power of one” in the diabetes community. These people don’t do it — whatever it is — for only themselves, they do it because they think it will make a difference in the lives of those with diabetes. Lisa’s words live in these special people — they know and understand the power of one.

This year’s recipients are:

Aaron Kowalski, Ph.D. — CEO, JDRF — A 15-year veteran of JDRF and the first person living with T1D to lead the research organization, Dr. Kowalski has a strong record of spearheading impactful strategic initiatives and forging new partnerships from his previous role as JDRF’s first Chief Mission Officer. But Dr. Kowalski is not a recipient of The Lisa Award just for his new role as JDRF CEO, it is because of his unyielding desire believing that good, is not good enough. No matter where you look; running, riding, testifying, lecturing, one-on-one conversations and/or leading, he is a true living example of how important this Power of One truly is, he lives it. Make no mistake, he will credit those he works with before taking credit himself, which only makes him even more deserving of this award. When it comes to true diabetes advocacy and understanding what this world needs to become for a better world for himself, his younger brother, and the rest of the world living with this disease,
Dr. Kowalski is the absolute “Real Deal”. I have had the pleasure and privilege to be side-by-side presenting with Dr. Kowalski and working with him in other dealings, and his brilliance is only outdone by his compassion to making a huge and true difference in this world of diabetes. Great things lay ahead. Power of one; indeed.

Kim May — President/Founder Nobox Creative — or perhaps she should better be known as supermom. In addition to being the owner of a hugely successful Ad Agency in Amarillo Texas, Kim has never forgotten the day that she laid her almost lifeless son, at the age of four and with a blood sugar of over 1000, on a hospital gurney stating for the staff to get to work on saving her son from a newly diagnosis of type 1 diabetes. Already a powerhouse in the community, she co-created GetDiabetesRight.org, a site dedicated to allowing people to download creative posters to be used for diabetes awareness within their communities on the warning signs of diabetes and what to do when these signs become evident. Hundreds of thousands of posters have already been downloaded and distributed Not nearly done with her efforts, Her Power of One continues as one of the founding and continuing Board Members of the Diabetes Foundation of Higher Plains in Texas which runs a camp each summer and also funds diabetes research. She and her husband, Jentry, are hugely dedicated to their family and her two sons’ MANY activities, as well as the community they live. Kim has left her mark on everything from museums, to churches, to Amarillo and Connect Magazine, to so many things diabetes. Her Power of One is unyielding although she too, would be the first to say, she has a lot of help.

Matthew Carlinsky — Lisa and Mark’s Son. As soon as I knew that Matthew would be one of the Lisa Award recipients this year, I wondered how far I would get before i completely lost it and the tears would flow. For the record, the tears started before I finished typing his name. And I’m sure they will continue, so I will just keep going.
The main reason for the tears is that Mark’s upbringing of Matthew and the fine young man Matthew is turning out to be is EXACTLY as Lisa would have wanted it. Mark is not easy, he has always demanded striving for the best, mostly in himself. To be able to do that in also a loving way to a son, and as a single parent is no easy task, But right back at him, Matthew is no lightweight either. They surely bring out the best in each other. At the age of four, Matthew was dealt a blow that no child should ever have been given. He lost his mom. There is no doubt that Mark has kept Lisa’s memory deeply arrive in Matthew and it is what Matthew has done with it that, he too, is being awarded a Lisa Award. It’s important that one remembers how important this award means to me, and remember what I have stated in the past, I do not give it lightly. Matthew has not only accepted his Mom’s Power of One, he has come to own it. As it was important for him to be helped by The Family Lives on Foundation, Matthew knew that in his Mother’s memory and teachings, it was time to give back, even at his young age, and give back he does. Through the organizations “Traditions Program” kids get to relive an activity or tradition that was special to their parent. For Matthew and Lisa it was Holiday and Birthday baking. Cookies and cupcakes. Matthew states that, “The Traditions program definitely helped me cope with the loss.” But more than that and realizing that his Power of One could make a difference, Matthew turned all of this into a month long awareness and fund raising effort. Being a member of his Oyster Bay High School’s National Junior Honor Society (which I’m sure mom smiles down upon as well), Matthew enlisted the help of his fellow students to raise the highest amount of money the high school chapter has raised in 17 years. (Side note under the full circle ‘small world’ title, My wife, Jill, was a graduate of the same high school). In the picture above, gone is the little boy sitting in his mom’s lap replaced by a strong young man and the photo shows Matthew addressing the crowd at the Foundation’s Annual Ball in Pennsylvania thanking them for recognizing his efforts. He pledged to continue assisting Long Island Families involved with the Traditions Program. Even as a ninth grader, Matthew is an absolute living legacy to his mom who believed that One Person can make a difference no matter where they are, or where they go, or what they do.

Congratulations to this year’s recipients.

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