Chikdren with diabetes

The Journey is the Destination…Do We REALLY Fail?

Posted on August 26, 2016 | by tomkarlya | 1 Comment

I’m speaking to a friend who shares with me ‘how hard’ they are working (with their child) so that the next visit to the doctor they will have a different A1C. “It’s so hard and we are doing everything we can. But the sacrifice will be worth it.” Another friend struggling so hard to lose weight (which I am VERY familiar), “I really need to look better and am working so HARD to get there.” And still another friend on, “It’s my only goal to get out of this job.”

Then what?

I have often wondered what happens when someone reaches their goal when a particular goal takes up ALL of their time and energy. As I watched the Olympics, I was struck by the comments on those who were in the Olympics in 2012 and failed to medal, and ‘…..came back to reach their goal….’

“Failed to medal”? Wow.

So if you medal, you succeed, and if you do not; you failed. Your body has become the most incredible specimen on earth and you are in the top .0001 % in your particular sport compared to the rest of the world’s population but if you do not medal, you failed.. And what about those who win. They get their medal. Then what?

When I left the acting world, after Kaitlyn’s diagnosis, you would be surprised on how many people asked me if I was sad I did not ‘make it’ as an actor? Make it? According to whom? Awards? Won a few, nominated for a few. Money? Made some. Not tons. Interesting that I qualify for a pension when I retire from Actor’s Equity, not a lot; but more than about 90% who will not get any. And I have worked with some REALLY GREAT projects over the years with the most talented people on earth. Did I really not make it?

You see I learned a long time ago that the goals I reach for are every day. Some goals with a stretch to keep me growing but it’s the daily goals that are the most important and here’s the thing; they’re my goals. Not by the standards of others. My goals.
When it came to our kids’ diabetes, same thing. Our goals.

I did not compare to other people’s stories. We did not live by numbers, for numbers, and against numbers for any other reason but close control mean feeling better. Trying to stay away from ‘swings’ were for the only reason to feel better. Success, and some better days than others. We learned and we moved on. But the goal was to try our best each day. Because if you try your best each day, your goal is set and evaluated by working toward your best, and observing the perfect things already in your life.

A child’s smile. A touch. A gesture. A good deed. Being with the people around us. You know many….many loved ones are not with us anymore….would they not think that just having the ability of one more day a HUGE SUCCESS? Many times when I travel, if I am at a restaurant I surely cannot take the ‘leftovers’ back with me to my room. I ask for a box and pack up what I did not eat. When I leave, I leave the box by a homeless person, and walk away. It makes me feel really good. What was the effort? Zero. Do something for someone….smile on face, goal reached.

My point is that the world is harsh on how we look, what we do, what we don’t do; but yet how much does the world give us to succeed?………so why let the world dictate on whether or not we are successful. How much are you succeeding at that is going right by you. Set a goal today, small as it may be. And go for it. Notice the goals you do reach. The majority of us do not have that ‘drive’ to become a Professional or an Olympian and I applaud those who do. But honestly, I would rather work toward something each and every day that I CAN achieve than to lay it all on the line to have ‘failed’ and need to try for another fours year to ‘try again’.

I’ll take a lot of little reached goals reached daily thank you, and will try tomorrow again. A lot of ‘littles’ make a life. Think about it.

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

When Did Insulin Enter the Oil Market? Rising Costs Seems that Way.

Posted on August 24, 2016 | by tomkarlya | Leave a Comment

Have you ever seen a story in the news about the rising cost of oil prices? Usually a photo of men hovering together as if to show that they control the price per barrel and the rest of the world can only watch and wait…..and bear the brunt of whatever decision is made. You’ve seen it, right?

The cry came forward from administration to administration how we had to be less reliant of foreign control of oil prices. It impacts us all. It’s a scary thought when we are confronted with the fact that a few are making a decision impacting many. Because of this impact, it garners the attention of the news media.

When it comes to diabetes, there has been stories lately that seem to be missed by many and is becoming an increasingly worry-some fact. The cost of insulin has been on the rise. It’s been on the rise for some time. In a Los Angeles Times article by David Lazarus almost a year ago he quotes Dr. Mayer Davidson, “…..Davidson cited a recent paper in the Journal of the American Medical Assn. showing that prices of both generic and patented insulins have jumped more than 500% since 2001. The cost of a vial of one of the most commonly used fast-acting insulins, Humalog, soared to $234 this year from $35 in 2001, the journal said….” (9/4 2015 LA Times)

What? And who do you think pays this? Answer, us.

It’s not as if there is a shortage. The American Diabetes Association states on their webpage; “ All insulin available in the United States is manufactured in a laboratory, but animal insulin can still be imported for personal use.” (Cite: Click Insulin Basics).

Now to me, I take it that there should be a fairly limitless supply as long as the manufacturing equipment has the materials needed. I’m pretty sure they do. So if there is enough to make what is needed, why the rise in cost?

This rise in insulin cost, to me, is just because a few companies control the substance that keeps people alive. They can dictate the prices because it’s not as if there are a million brands that would keep the consumer cost to a minimum, so much for consumer choice. It’s because you have a choice of only a few. Demand dictates cost. With over 29 million people with diabetes and millions of those on insulin with only a few choices…….well that equals what we are now facing. Glut. Greed. Money. Costs escalating.

But when people are prolonging their insulin doses by cutting back on what they feel ‘they absolutely need to have’ due to high costs, as oppose to what the doctor, recommends, and what the patient knows they need; ladies and gentlemen—-this is a real problem. This could cost lives.

Keep your eyes open on this topic. When you see advocates asking for actions, act. Join dPac today. If you have diabetes or a loved one with diabetes, this is site you might want to follow as they do an incredible job on ‘acting’ in all fields of diabetes. DPAC was co-founded and is run by patients with diabetes: Bennet Dunlap and Christel Marchand Aprigliano. Joined by other diabetes patient advocates the Diabetes Patient Advocacy Coalition (DPAC) is an alliance of people with diabetes, caregivers, patient advocates, health professionals, disease organizations and companies working collaboratively to promote and support public policy initiatives to improve the health of people with diabetes. DPAC seeks to ensure the safety and quality of medications, devices, and services; and access to care for all 29 million Americans with diabetes.

Insulin is not oil. It would be a shame if these costs are controlled in a board room. I fully understand free enterprise….but when a ‘controlled market’ of people are paying too high a cost to JUST stay alive…..someone needs to step in. People will die.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

YOUR LAST CHANCE IS TODAY—-Do You REALLY Care About Those who Died?????

Posted on August 11, 2016 | by tomkarlya | 3 Comments

Okay, I admit that the title was a bit much…..but so many who should be involved in this have yet to do so. AND THIS IS SO IMPORTANT. Remember your anger reading about the so many who have died, or became seriously ill, because their diagnosis of T1D was missed? Kycie, Little Reegan, and so many more…..remember? How angry are you? Angry enough to do something?

For the first time, there is an attempt to capture as much information and data as possible regarding this issue and YOU CAN HELP. This is YOUR LAST CHANCE to be part of history because tomorrow……the survey is done. Today is the last full day.

Because of the requirements of his survey….you must become a member of Glu. It is a great site asking great questions all the time…..you can choose to be part for as much or as little as you want; and for as long as you want, but to give this survey credibility, it is required by the ones who gave it an IRB Approval. (Institutional Review Board).

Go to www.myglu.org. I purposely do not have a direct link from here to their site because if there is a link through ‘my cookies of my computer’ the survey will not be available because I took it already.

Once a member, go to the right side and click ‘My Diagnosis Story” and take the survey. It is there that you can share your story. We REALLY NEED as many parents as possible so please consider it.

The name I gave this movement years ago was a Child’s Cry for Change…..please help those voices be heard……take the survey today. Be counted. Thank you.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Hey, Moms of Kids with Diabetes—Olympic Moms have nothing Over You…..Take a Bow.

Posted on August 10, 2016 | by tomkarlya | 2 Comments

Olympic parents. Specifically Olympic moms. Ever see them in the stands? Close-up, upon close-up, of the moms who know everything their child sacrificed and diligently worked at to be in the Olympics. Proctor and Gamble even did a commercial about Olympic moms.

Yeah, so what.

Actually I don’t mean to belittle those moms and in fact I have great respect for them, But I also am very aware of a different kind of mom. Moms who go through life with the same hope, the same expectancy, the same anxiety, the same disappointment, the same joy, and the same drive for gold…….but there is no camera showing a national audience the faces of these moms…..in fact there is not even a gold medal awaiting their child…….nit even a bronze….because these moms are dealing with diabetes in the privacy of their own lives, and not in a national spotlight whatsoever.

But make no mistake about it……those facial expressions that you see on TV with those Olympic moms are just as present on these special moms, and are there every day because moms of kids with diabetes are just as diligent, just as involved, just as hoping-for-the-best as any mom of any athlete competing in Rio.

And that’s you (yes, I know—-there are dads too). So to all of those kids out there living with diabetes, this is to your moms who help their kids strive for gold every day in their own lives. The gold of getting EVERYTHING life has to offer. Moms do that. Your mom does that. So moms, Imagine your picture within the rings of the picture I included, these are but a handful of moms; but we know that you could fill the entire city of Rio, if you wanted. Without fanfare, without spotlights, without commercials about what you do…..but just because you are you……you are, indeed, gold.

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

Dear CWD FFL…….Thank You for Saving My Children’s Lives

Posted on July 14, 2016 | by tomkarlya | 1 Comment

Dear Children with Diabetes Friends for Life,

It’s been 17 years since we started together. Wow! Where did the time go?
I don’t know if I’ve ever said this to you before, so I’m sorry it took so long.
Thank you for saving the life of my first child, and also for saving the life of my second child upon diagnosis of this dreaded disease.

After 17 years I looked around this year’s event in Orlando last week and reflected on how fortunate I have been to be here, since day one. To many, I guess, I’m a CWD FFL insider when in truth, I’m just a CWD Dad. I volunteer here, and there…….. as so many others do. None of us are your favorites but what we are is YOUR ARMY of volunteers because in the beginning people were there for us — we must now be there for others. If you are now involved, you should get involved to pass it on also.

You’re not a huge organization with a huge infrastructure……no…..you are a group of people, friends for life in fact, who believe in just plain ‘ol helping. Helping because a two-year old has been diagnose and there is nowhere to turn. Helping because we are up at 2 am and we don’t have to explain it to you. After years of turmoil and doubt, coming here we did something we had not done in a long time, we laughed. That happens when people are comfortable with each other, they laugh. That happens here.

There were so many sponsors present……but not all….not enough. It bothered me that Medtronic was not there this year. Not sure why, its none of my business really, I’m just a volunteer. But when my daughter went on their pump in 1999, I guess families mattered back then. I guess they don’t anymore. I’m sure it bothered you also, and I’m so sorry that it’s such a struggle for you all who plan and coordinate this incredible event all year-long.

You should not have to struggle to get companies involved. People in our world are VERY LOYAL. Friends for Life also means clients, patients, and customers ‘for life’….and they should think about that a little bit. You should not have to seek out companies, they should seek you out to learn how to participate.

When my daughter was a very young age, we learned that education was the equalizer to battling this disease. We learned to do all we could to ‘own it’ so it would not own us. We were taught. We listened. And in-between all of the sessions of knowledge and the updates of research; we laughed. We talked. We grew to love people who needed no explanation when we had to do ‘something diabetes’…….they knew.

And after 17 years, I have watched so many children thrive in the world around them. Mine included……because of you. Us parents learned a thing or two also.

We have been taught and taught well. No easy feat. In fact, an impossible feat if one dare to sit down and actually figure out how it all comes together. But it does. There is only one explanation that can probably explain it. Sponsors who care, volunteers who care, families who care and all who dare to dream of learning together….because good friends do that, but those who do it to save the life of a friend’s child are more than just good friends………we are friends for life.
Thanks again.

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