Diagnosis – DiabetesDad

Death from Diabetes……A Small Glimmering Light has Arrived

Posted on August 30, 2018 | by tomkarlya | 3 Comments

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

Posted on August 24, 2018 | by tomkarlya | 1 Comment

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?

Posted on August 21, 2018 | by tomkarlya | 9 Comments

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’.