Wednesday, November 30, 2011

Diane Sawyer, I'm ready for my close up!

I've selfishly spent this month spouting off thoughts from my swelly brain. I have blogged every day in the name of Diabetes Awareness and I have yet to write a post that educates the masses. So here are my educating thoughts in bullet point form...just in case, one day, the world decides it wants to know the facts about Type 1 Diabetes.

* When you hear about diabetes on TV...chances are, you are hearing about Type 2 Diabetes.

* The notion of lose weight and lose diabetes is a complete hoax. Diabetes never goes away. If you have Type 2 Diabetes, You may be able to stop medication if you lose weight and change your diet...but even if you do, diabetes is still there waiting. It isn't gone. It will always be there lurking, and the fact remains that many can lose weight and still cannot go off their medication.

* When the word Diabetes gets tossed around, for some reason the first thing the world does is place blame on the person who has it. They think it is their fault. They think that they are lazy, and need to change their diet. This misconception is even thrown out there by trusted people in the media.

* You should know, Dr. Oz has no clue.

* Part of the problem is the television likes to talk about "diabetes." There is no "diabetes." There is "Type 1 Diabetes," "Type 2 Diabetes," "LADA," and "Gestational Diabetes." There may be even more types than this.

* My boys have Type 1 Diabetes. They have to fight the stereotypes and misconceptions every day...even though this disease has nothing to do with diet. It has nothing to do with lifestyle. Take everything you know about diabetes and flush it away, because 1: They can eat that. And 2: They didn't eat too much sugar to get Type 1.

* Type 1 Diabetes is an AUTOIMMUNE disease. They were born with the predisposition to get the disease and then there was a trigger that made the body attack itself. Was the trigger an illness? Was it an environmental trigger? No one knows for sure. But what the doctors DO know is there was nothing in place to prevent the process when the attack began. J was 8 months old and his weight was under 17 pounds when he was diagnosed. Not fat.

* Diabetes is all encompassing. It affects every system in the body...the complications are what type 1 and type 2 have in common. Because of this we need to keep tight control of the numbers, but that is near to impossible in ever growing boys. We take things one number at a time...but everything effects the numbers. Food, stress, exercise, weather, excitement, fat, protein, sleep patterns, illness...EVERYTHING!!!

* Diabetes never sleeps. Blood sugars fluctuate even at night. Because of this, most people with type 1 check their sugars in the wee hours of the morning. We have an alarm set for 1am every single night.

* There are no days off with diabetes.

* My boys test their blood sugars at least 8 times a day, each. That is on a good day. That is $25 dollars a day for test strips ALONE. Insulin is $100 a bottle. We use a 1 bottle every 5 days. And don't even get me started on the cost of pump supplies!

* The emotional toll of diabetes is oft not recognized. As a parent of three type 1's, the worry can be overwhelming. The cogs in my brain are constantly turning numbers around and figuring on the next step. When my boys get older they will take over the worry for themselves. As a mother, I wish I could always be their back up pancreas. I would bear their burden forever if I could.

* Insulin is not a cure. Let me say it again: INSULIN IS NOT A CURE. It is a volatile medication at best. Predictability is completely lacking. They can eat the same diet every day...exercise the same every day...keep everything constant...and everything WILL be constant, except the blood sugars. There are just too many factors to keep it all "level." Blood sugars fluctuate. It is a huge burden to bear.

* High blood sugars are uncomfortable, and scary as they lend to future complications. Low blood sugars are uncomfortable and ultra scary as they can lead to passing out, seizures, coma...death.

* My boys can't mindlessly eat. They must count carbs. They must give insulin for every morsel of carb that enters their bodies. There are very complicated ratios programmed inside their insulin pumps. Insulin pump? Their constant companion. They need insulin in their body 24 hours a day. Even a few hours without insulin can cause severe problems, even hospitalization.

* My boys can't mindlessly exercise. They must adjust their insulin, have an backpack full of emergency supplies. A blood sugar monitor. Test strips. Glucagon. Fast acting sugar...

* Did you know that apple juice is a life saving medication in our home?

I could talk for HOURS about Type 1 Diabetes. There are SO many things I want the world to know! But I'm going to let my three boys who live with diabetes end this post today.

8 year old L wants you to know this: "Changing your sets. That is the hardest thing about diabetes. It is pretty hard. You have to rip out your old set and then use a needle to put in a new set. It feels needley. You know what I mean? It just really hurts. Needles are not fun because they are dangerous...because they are sharp. And they are real."

10 year old B wants you to know this: "Diabetes is annoying. It is a lot of extra work all the time. I'm always bleeding! Shots are painful and I always have to get them. I have no choice. I want to be like normal kids. Like, it would be nice not to have to always type numbers into my pump. It would be really nice not to count carbs and always worry about my diabetes. Sometimes I really worry. The only good thing about diabetes is our dog, Lawton. We wouldn't have him if I didn't have diabetes."

14 year old J wants you to know this: "Diabetes is a mix of good things and bad things at the same time. Most of the good things are childish, like getting out of school for doctor appointments and getting good snacks when you are low. The bad things definitely outweigh the good things. If you don't monitor yourself closely you could feel sick and throw up. You have to prick your fingers every day, and every three days you have to get a big painful shot on your belly to change your pump set. Diabetes sucks for the most part. (Can I say sucks? Stinks doesn't seem strong enough.) The most annoying part is testing my sugar all the time....and to remember. If I forget to test I usually get high blood sugar and that comes with a headache, stomach ache and I get really grumpy. There is nothing really fun about diabetes."

And that my friends, ends day 30 of National Health Blogging Month. I have officially achieved my goal of blogging every day in honor of Diabetes Awareness Month. I am honored that you took time out of your day to read my blog. I plan to take the rest of the week off from blogging...but you know me...I might have to pop on earlier than planned to purge my emotions...or chronicle something hilarious. Bless you for taking the ride with me...

Here's to a cure.


  1. Yay! We did it! I think you are pretty amazing! I can Imagine having to keep three diabetics alive! Thanks for always being an inspiration!

  2. That was awesome. You are definitely an inspiration to me. I have an 8 year old type 1 diabetic and it's hard, I can't imagine having 3. How great that they have each other, and that they have you. :)

  3. Yay, you did it!! : ) Speaking up for all of us (who didn't blog every day about diabetes), thank you Meri!

    Your boys are so sweet, and I'm so glad you have Lawton too. That is a definite benefit! : ) I should ask Mary Claire for her words.

    Love you! : )

  4. Meri,

    I have really appreciated your posts this month, as I only recently found your blog. I've had type 2 for about 9 years, but was just re-diagnosed as LADA two months ago, and started CGM just over a month ago. It's been a whole new experience for me, despite having two gone through two pregnancies and using insulin for years. I relate to you as a parent, being responsible for so many (MANY) things, but also as the diabetic myself.

    What you're doing for your kids is amazing. Best of luck with everything, and I hope you keep on posting!

    All the best,
    Cheryl, @cherylstober

  5. Great post! I found your blog during these last 30 days and have really enjoyed your daily posts! I esp liked hearing from the boys today. Love it! :)They are troopers and the real deal.
    Your list of facts for the world was good too- exactly what we want them all to know. :) It really isn't that long of a list- why can't the whole world just 'get it?'
    oh well... thanks for always reminding me I'm not alone. :)

  6. Meri...I loved this. I have missed you and your wonderful posts. xo

  7. TOTALLY loved the words from the boys....and yea, "stinks" just doesn't cover it!! ;)

  8. Thank you. Thank you SO MUCH for not only spreading much needed awareness about Type 1 Diabetes, but also spreading ACCURATE, NECESSARY, MUCH NEEDED Type 2 Diabetes awareness. I could cry with joy!

  9. Thank you, Meri. You said it all.

  10. You are so awesome. Just awesome. Thank you


    both for your bullet points and the boys' perspectives. thank you!!


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