In Life With Diabetes, Small Medical Advances Aren't Small At All - Nor Are They Gadgets~

Gadget: A mechanical contrivance or device; any ingenious article

1. A small mechanical  device or appliance 

2. Any object that is interesting for its ingenuity or novelty rather than for its practical use.

Synonyms: Contraption, whatsis, dohickey, thingamajig dictionary.com

Insulin pump: A pump for delivering insulin in order to achieve tight blood sugar control and lifestyle flexibility while minimizing the effects of low blood sugar (hypoglycemia). The pump is composed of a pump reservoir similar to that of an insulin cartridge, a battery-operated pump, and a computer chip that allows the user to control the exact amount of insulin being delivered. The pump is attached to a thin plastic tube (an infusion set) that has a soft cannula (or needle) at the end through which insulin passes. This cannula is inserted under the skin, usually on the abdomen. The cannula is changed every 2 days. The tubing can be disconnected from the pump while showering or swimming. The pump is used for continuous insulin delivery, 24 hours a day. The amount of insulin is programmed and is administered at a constant rate (basal rate). Often, the amount of insulin needed over the course of 24 hours varies depending on factors like exercise, activity level, and sleep. The insulin pump allows for the user to program many different basal rates to allow for this variation in lifestyle. In addition, the user can program the pump to deliver a "bolus" during meals to cover the excess demands of carbohydrate ingestion. The pump is currently the closest device on the market to an artificial pancreas.”  medterms.com

YEP, nothing novel about an insulin pump - especially if you're the person who's attached to it. And the same can be said for Continuous Glucose Monitors and the accuracy of glucose meters and test strips. 

######

Dear Elisabeth - 

I read your article in the New York Times, "Even Small Medical Advances Can Mean A Big Jump In Bills.  I’ve marinated on it for a few days and honestly, I’ve struggled with my response.  

I agree that the cost of diabetes and diabetes technologies is high (and has always been in the 36 years that I've lived with t1 diabetes,) and I'm well aware that diabetes is BIG BUSINESS. 

I find the cost of diabetes to be incredibly expensive - even with insurance - And I worry about my financial future. 
I worry about everyone living with diabetes having to deal with the same issues and concerns that I do. The financials keep me up at night. And I believe that things need to change regarding the cost of living with diabetes. 
I hesitate to start the paperwork on a new pump or CGM (Continuous Glucose Monitoring system) with my insurance company because of all the work it requires - And I'm worried about the out of pocket expense.  

BUT, as someone who hasn’t had a day off from her type 1 diabetes in 13,230 days and who knew many of the casualties of the Diabetes Dark Ages by name and personally, I'm here to tell you that my quality of my health and the quality of my life has improved greatly over the years since the advent of diabetes technology. 

And I know that my future good health depends on diabetes technology, highly engineered insulin and anything else that:

1. Keeps me alive
2. Reduces the risk or helps to limit future diabetes complications
3. Gives me a better quality of life with diabetes.

In your article you stated: That captive audience of Type 1 diabetics has spawned lines of high-priced gadgets and disposable accouterments, borrowing business models from technology companies like Apple: Each pump and monitor requires the separate purchase of an array of items that are often brand and model specific. 

I found that statement to be callous and sensationalized and a huge over simplification of the many benefits of diabetes technology - Actually, you glossed over the benefits, BIG TIME.  
But I did and do relate to the frustrations re: to the integration and purchase of diabetes weapons. 

Still, make no mistake - Glucose meters, test-strips, Insulin Pumps, CGMs, fast acting insulin, etc., are weapons when it comes to living with diabetes - crucial ones that help us navigate the ever changing terrain of the diabetes battlefield. Without them, we'd lose the D war. 

Elisabeth - Your article made it seem as if people with diabetes didn't need or benefit from D technology  - And that's not true. 

Here’s the thing: Unlike many chronic illnesses, a large portion (8,757 hours  a year - give or take a few hours) of my type 1 diabetes care is in MY HANDS. 

So yes Elisabeth, people with diabetes absolutely need all the help we can get! 

And people with diabetes need glucose meters that provide us with graphs that chat with both our insulin pumps and our CGMs - Glucose meters and test strips that are accurate in order to properly calculate insulin via pumps, shots or CGMs and we and require fast acting insulin that quickly correct elevated blood sugar and allow us to eat when a meal is ready, instead of 20 to 30 minutes after taking it. 
And those people with vision issues because of diabetes need and require glucose meters with an audible voice. 

Personally, I would NEVER entrust my life, my health or my future health to mere gadgets Sidebar: Please refer to opening paragraph for the definition of the word gadget. 

Life and life with diabetes is far to complicated for novel gadgetry. 
Nobody living with diabetes and regardless of the type would rely on simple gadgets - But it would be great if we could. 
For those of us who remember The Diabetes Dark Ages, the time before insulin pumps; CGMs and glucose meters, life with diabetes had less precision, less flexibility and was more complicated - And led to more diabetes complications. 
We tested urine instead of blood,(disgusting and far from accurate,) had only a few types of insulin to choose from. And as far as the diabetes diet back then, it was anything but flexible. 
God, we would have given anything to have diabetes technology and fast acting insulin available to us! 
Technology like insulin pumps that allow for the customization of insulin delivery and more glucose meters/test strips and Continuous Glucose Monitoring systems and the advent of  analogue insulin .
The creation and availability of analogue insulin changed our lives for the better and allowed better glucose control, i.e.,blood sugars and meal time flexibility. 
All, key weapons for those of us doing battle with diabetes on a daily; yearly, weekly and decades, basis.

In the 1980’s, when my family and I received our first glucose meter - which cost hundreds of dollars; wasn't covered by insurance and was shared by the whole family shared, my parents, (my dad had t1) sister, (also a t1) and I had to meet with our pharmacist to learn how to operate the meter. 
The meter was the size of a VHS tape, took 3 minutes to calibrate and had a 44 page instruction book. There was nothing portable or convenient about it - And it was far from accurate - But it was more accurate than urine testing - And we were grateful for it.
A few years after we purchased our first meter, I lost 2 of my aunts to type 1 diabetes- they were in their early 50's. 

And I believe that if my older sister Debbie had diabetes technology available to her when she was diagnosed as a child( in the late 60’s,) or even as a teen, she wouldn’t have died from diabetes complications. Complications including; heart attacks, gastroparisis, multiple strokes and kidney failure, 22 years ago at the age of 34. 

I miss my big sister and I think about her every day - And I wish that she would have had the diabetes technology that I have available at my finger tips today - And clipped to my hip since 2002. 
And I will continue to advocate for people living with diabetes - And I'll fight tooth and nail to make sure that we've left the Diabetes Dark Ages forever. 
Sincerely, 
Kelly Kunik
t1 Person with diabetes for 36 years.
Diabetesaliciousness.blogspot.com
@diabetesalish

Diabetesalicious-Lite: Diabetes Dark Ages, Alecia On The APP/AP, Fearless/Fearful, Positive D Visuals, CWD-FFL15 & #SpareARose

I’ve written about the Diabetes Dark Ages a lot on Diabetesaliciousness, because (and lucky me,) I was diagnosed just as that chapter of diabetes history was coming to a close  and diabetes technologies were coming into play - and my memories are vivid.  
I wrote a piece on the D Dark Ages over at SuiteD and I'd love it if you click HERE, check it out and let me know what you think~

Speaking of Diabetes Technology/technologies, t1 and SurfaceFine blogger, Alecia Wesner is featured in today’s NY Daily News, re; her "app-tastic' experience on the AP. 
Click HERE and read about our fearless and fantastical friend's experience! 
Also: I WANT.

Fearless and fearful, similar versions of the same root word, with very different meanings. We all find ourselves walking a fine line when it comes to being fearless and fearful in all aspects of our lives, including our lives with diabetes. 
And if we're lucky, we find ourselves a place to exist and flourish in the in-between of both words and worlds. 
Not being so fearless to the point of of being flipping crazy, and not being so fearful that we allow ourselves or others to be imprisoned by our fears.
After 37 years of living with diabetes, I've seen a hell of a lot and I've learned and continue to learn everyday. 
For me, the 24X7/365 requirements of my diabetes life include; continual education, (of myself and others,) the latest in diabetes technology, copious amounts of laughter, lots tenacity, acknowledging and then doing what I fear when required, while remembering to focus on the positive & help others in the process. 
Also, I require boatloads of hope and positive diabetes visuals - we all do! 

Re: positive diabetes visuals, take a look at Moira's positive & empowering post over at Despite Diabetes.   

Speaking of positive and empowering, here's a sneak peek at the initial and not yet complete/still fantastical work in progress, Adult Program for the 2015 Children With Diabetes- Friends For Life Conference! 
Sidebar: The Kids Program isn't up and running yet, but I guarantee it's sure to please!
Continue to watch childrenwithdiabetes.com for updates and details & see you in Florida! :) 

Lastly and also in the positive/empowering vein: The Super Bowl isn’t the only thing kicking off on February 1 - SpareARose also 'kicks-off' on Super Bowl Sunday and quite frankly, my bet's on #SpareARose for the win!  
11 roses are better than a dozen and for the cost of 1 rose (5 bucks) you're literally sparing a rose and saving a child. 5 dollars provides life saving insulin for a month to a child with diabetes in third world/developing country!  It's a sure bet on game day and it'sthe best money you'll spend on Valentine's Day.  

Order your "spared rose and or roses," here.

Diabetes In The Wild At The Harvest Moon Party~

Friday night I received an invite via text to a Saturday night Harvest Moon party, promising good people, good fun, and a beautiful view of the moon.

Sidebar: Tonight (September 24th,) is the official Harvest Moon for the Americas - but it’s pouring buckets in my neck of the woods so I’m not sure I’ll see it. 

But I digress. 

Cut to Saturday night. I drove over to the party, parked my car and with pumpkin bread in hand, walked through the front door and into the kitchen - where I was immediately greeted with hugs and by people I haven’t seen in ages, while simultaneously being introduced to new faces. 

Thanks to kismet, I had two “diabetes in the wild,” encounters with two kick-ass women with personal and professional connections to diabetes. 

"Diabetes in the wild," encounter number one occurred outside on the deck - where my friend was talking to a young woman. I didn't know anyone out and the deck and felt like a dork. My friend motioned for me to come over. I did, he introduced us and mentioned that I wrote a Diabetes Blog. 

Turns out she was a grade school teacher who had a student with t1. 

She told me how she’d become aware of all things diabetes related and was learning more everyday. 

We talked about growing up with diabetes, she asked me about my low and high blood sugar tells and I told her.

Two weeks into the school year and this woman knew a lot about t1 and clearly wanted to learn more. Quite frankly, I WAS IMPRESSED. 

And IMO, her t1 student was lucky to have her as both a teacher and a friend. 

I gave Teacher Lady a few resources including CWD and Coco The Monkey.  

HELLO KISMET. As soon as I mentioned Coco, I remembered that I had a set of Coco books in my trunk. 

Sidebar: I was going to give the books to a local t1, but she already had them - so the books had been living in my trunk for a month.

I went out to my car; searched my trunk and found the Coco books, went back inside and handed them over. Teacher Lady couldn't wait to check them out over the weekend and then read them to her class!  

We exchanged numbers and I told her to keep in touch.

Later on in the evening, when I was bolusing via my Omnipod PDM for some crazy delicious autumn leaf sugar cookies, Teacher Lady walked over and said to me on the sly: You good? 

I told her I was and we both laughed. Girlfriend had my back and didn’t blink twice about me bolusing for cookies.

The second “diabetes in the wild” moment occurred later on in the kitchen, when I met a mom of a t1. dMama's daughter was now a mother herself and had lived with diabetes for over 3 decades. 

Like magnets to steal, we started talking about all things diabetes related. 

We discussed surviving the Diabetes Dark Ages, and dMama told me that the very first glucose meter her daughter ever used cost over a thousand dollars and wasn’t covered by insurance.

And I could totally relate. 

We discussed scar tissue, diabetes idiosyncrasies, the cost of insulin, and everything in between. We talked about diabetes challenges - back in the diabetes dark ages and ones we struggle with in real time.

I told dMama about the Diabetes Online Community and peer support and gave her some links and info I thought her and her daughter would find helpful. 

Once again I found myself exchanging contact information with someone who “got it.” 

As I put the key in the ignition, I looked up at the moon, partially hidden by deep purple and navy night clouds, and thought about how we are all connected - and how once again, diabetes proves it. 

The amazing kick-ass women I’d met both live near me, each with personal and professional connections to diabetes, and I’d never met either one of them until now - even though we shared mutual friends. 

Bottom Line: The universe is big, the world is smaller than we think - the world of diabetes - even smaller. The moon is magic, the universe knows what it’s doing - and we are meant to meet exactly when we do. 

Diabetes Complications & Judging One Another~

For the record, I love D moms and dads - I LOVE THEM -And I learn from them every single day. 
Also: You never know what a person is carrying around with them - diabetes or not - so leave your judgment at the door and keep your heart filled with empathy and compassion. 
######
I was talking to a DParent I’d literally just met minutes earlier while attending a friend of a friend’s get-together a few weeks back. We’d been chatting for all of about 16 minutes when DParent said something like: Well.. You don’t have any D complications... do you?? 
I mean you took care of yourself....You did what you were supposed too...Right? 

And in that moment my heart hurt so much I thought it would break.
It wasn't the first time a person (or a D parent - or a person with diabetes for that matter,) had said those very same words. But no matter who says it, it hurts to hear if you've been in the diabetes game for decades - And the D judgement from your own, even when it's unintentional pierces your heart and puts you on the defensive. 

I was simmering and I didn't want it to boil over to the surface, nor did I want to flip my Diabetes Bitch Switch. 
I didn't want to fight, especially with one of 'my own." 
I’d just met DParent. I couldn’t even remember her last name - And I probably would have answered her question if I hadn't felt it was dripping with diabetes judgement - And I knew that she didn't hear the judgement in her own words.

I wasn't just mad at the question. I was mad at my 14 year old self for sins committed long ago, when I blamed my sister Debbie for her diabetes complications and her alcohol issues. 
I was mad at my 20 something self and her skewed view of people with type2 diabetes that was less then kind and understanding.

And I was mad at myself for what I could and or should have done in my own diabetes past. 

Knowing what I know now about diabetes in all dimensions, diabetes and depression and diabetes burnout verses what I knew then brings all sorts of emotions and D guilt to the table.
I took a deep breath, looked D Parent in the eye and calmly asked: Why do you think that people with D complications didn’t try their best with the tools they had at the time?
Seriously, would you think less of me as person if I told you I did have D complications than if I didn’t?
D Parent: Well.... It’s just that people with diabetes comp…. 

And I stopped her right there. 

Me: It’s not so easy to scrutinize someone with diabetes complications when you take a look at the history of treating diabetes. 
When I was growing up,(and pre - me for that matter,) in the Diabetes Dark Ages, we didn’t have technology like meters and cgms to manage our blood sugars, we tested urine. 
Insulin pumps were neither precise nor compact and they weren’t covered by insurance or available to the masses. Sliding insulin scales, like glucose meters were relatively new (don’t even get me started on accuracy issues,) and there were only 3 insulins on the market when I was initially diagnosed. 
I reminded D Parent that the diabetes diet back in the day was incredibly restrictive and how all of the above made living with diabetes hard - And that it was still hard - even with all the flexibility that today’s D diets have.
And that sometimes that even D technology in all it’s glory makes diabetes even harder to deal with mentally. 

And then I continued rambling and said that in the Diabetes Dark Ages, nobody treated the mental side of diabetes - And no one considered the mental toll diabetes took on a person with diabetes or their loved ones. 
Diabetes Burnout, like diabetes itself and all its forms, was (and by those that are uneducated, ) was and still is, considered a lazy man’s disease and a cop-out. 

And that genetics and sheer dumb luck also comes into play with diabetes and complications.

Me: Honestly DP, don’t we get enough judgement from people who don’t live with diabetes? We shouldn’t judge one another when it comes to diabetes, regardless of the type or the diabetes complications. It isn’t PWDs (people with diabetes) sans complications verses PWDs with complications. 
We have to help one another, not judge one another for what we did or didn’t do in the past. We have to focus on what we are doing now to help our future.

And then I took a breath and D Parent looked at me with glassy eyes and apologized. 

DParent told me that she’d never considered all of the above. She was less than 3 years into her son’s life with diabetes and that most of what she’d been told about D complications blamed the PWD or the parents of the PWD and that she was still learning - And that it was hard and that she was scared. 
And her words allowed me to look at her with new eyes - And myself. 
I gave DParent a hug and told her that even with 36 years in, I was still learning too. 
And that my D passion might easily be mistaken for judgement - And I really hoped that wasn't the case, but if she felt at all judged,I was sorry and that she was doing a great job and to hang in there. 

 And then we smiled at one one another as we held each others hands. 
Then the talk turned to the snack spread and guessing the bolus for the spicy hot-wing dip, which eventually led to talk of the DOC and before we knew it an hour had gone by. 
In the end we both left the party with new perspectives and new lessons tucked in our hearts and our heads -  And with a new friend's digits in our smartphones~   

This Week's Diabetesalicious Giveaway Winners & An Honest To Goodness Diabetes Hero

First: 
Time to announce the winners for this week's Diabetesalicious giveaways!

The Winner of the Tuesday's Kind Bar Cube giveaway is Wendy Rose and the winner of Thursday's DiabetesSisters Grab Bags giveaway is Jessi Panke!

Congrats, ladies - Please email me your mailing addresses so your prizes can be shipped out

And to all those who entered, thanks for your amazing comments! 

Next week offers a whole new slew of goodies so keep entering because you never know, Random.org just might pick your comment/tweet/facebook post as the winning entry!  

Next, for something (SOMEONE) really important: 

It's time to focus on an amazing Diabetes Hero among us.

Living with diabetes isn't always a cake walk (pun totally intended, but true none the less,) living with D is hard work & it's never ending. 

But imagine being diagnosed 68 years ago in the Diabetes Dark Ages, when urine was tested instead of blood, the diabetes diet was restrictive to put it mildly, needles had to be boiled and sharpened and insulin came directly from cows and pigs pancreases. 

Diabetes Blogger & Joslin 50 Year Medal winner Richard Vaughn,(who I'm proud and privileged to call my friend,) and author of the autobiography "Beating the Odds:64 Years of Diabetes Health," knows all about those days first hand and was featured on Sanofi Diabetes DiscussDiabetes.com website this week.

Richard not only survived the Diabetes Dark Ages- he plowed through them and thrived. 

I think one of the things that's so amazing about Richard was/is his ability to move forward and embrace not only the changes that technology brought to diabetes management, but the diabetes online support in the form of the DOC that technology brought to the diabetes table as well. And then of course there's Richard's  positive attitude - I have to mention that!

Richard always has a kind word and good advice for every single person he comes across in the Diabetes Online Community, be it online or in real life and that is a wonderful thing, indded. Richard is a great man and he's one of my favorite Diabetes Heroes. 

Do yourself a favor and read Richard's interview over at DiscussDiabetes you'll be so glad you did! 

Diabetes Hero and friend Richard Vaughn and I
at the 2013 Children With Diabetes Friends For Life Conference in Orlando

#NEDAwareness Week: We All Know Someone~

We All know somebody 

We are smack dab in the middle of  National Eating Disorders Awareness Week (February 24th through March 2nd,) and this year’s theme is “Everybody Knows Somebody,” and that statement is absolutely true. 

I have friends with eating disorders (some with diabetes and some without,) and I’ve worried about them and I’ve tried my best to understand their issues with food. We’ve talked with some of them at great length about how they developed their eating disorders and where they stemmed from.  

And I’ve always tried to understand and be understanding - And I’ve worried about them because they are my friends and I love them.

And our DOC friend LeeAnn Thill has helped me to better understand eating disorders in general - Including  Diabulmia, an eating disorder specifically affecting people living with Diabetes. I first read about Diabulmia in SELF Magazine years ago and while I had never heard of it before - I wasn't surprised that such a thing existed  - Because diabetes and food issues go hand in hand.

LeeAnn created The VIAL Project  -  A "website for people with diabetes and mild to severe food & body issues, including disordered eating and diagnosed eating disorders, to share original, creative self-expression and connect with each other.  social media and art." 

Another site promoting awareness and support for pwds with Diabulmia is: We Are Diabetes.Org , founded by Type 1 PWD Asha Brown. FYI: Asha talked about her struggles with Diabulmia and WE Are Diabetes,  yesterday over at DiabetesMine. 

As as person with type 1 diabetes I’ve developed my own food quirks over the past 35 years. 

As a child with diabetes who grew up in the Diabetes Dark Ages, I snuck a lot of forbidden foods in the darkness of night and behind closed doors. 

And my tween self flushed candy wrappers down the toilet and than ran in place for 20 minutes to try and burn off the sugar (we didn’t count carbs back then,) contained in the contraband Reese’s Peanut Butter Cups.  
11 year olds should never do that  - diabetes or not. It's not a good thing - And I lived with that diabetes guilt as a child.... and as an adult.

 And that guilt lives with me still.

So do the memories of me sneaking food when I played over friends houses and then being caught. And instead of admitting to it - I lied like a rug - And ended a friendship over it rather than admitting that like any 13 year old - I just wanted to be normal.

In high school I overate with my friends at the mall and pizza joints because I could - And because that's what teenagers do - But in the Diabetes Dark Ages that was off limits - And I’m the one who suffered in the end. 

 As an adult, I have moments where I over eat for the same reason - and a few others.  

I’m reading Ginger Vieira’s book:  “Emotional Eating With Diabetes, ” and it’s a great guide in workbook form for people with diabetes "to create a positive relationship with food.” 

It turns out that I have some symptoms that would put me in the Emotional Eaters category. - And I wasn’t surprised to read that - After all, as a child and then an adult living with type 1 diabetes, food has always brought up all sorts of emotions.

There is there need for food to sustain my life - There was the longing for forbidden food and the feelings of shame and guilt whenever I was caught eating something that was deemed OFF LIMITS. 
There's the happiness that food brings to us as a society and culturally. 

We celebrate with food, we commiserate with food - Food is comfort. 

As adult with diabetes I’ve made it a point for no food to be put on the forbidden list - EVER. 

I tell myself that nothing is off limits and that I can eat everything - And that’s helped me a lot. But as an adult and diabetes or not, I shouldn’t eat everything because that’s not good for anyone. 

Quite frankly, no one can eat what they want, when they want - Diabetes or not!

It’s just not healthy.

So if your reading this on the internetz, help to spread the word about National Eating Disorders Awareness Week!  It's as simple as posting the link to their website ( http://www.nationaleatingdisorders.org/node/687 )  on your website or Facebook page, following the #NEDAwareness hashtag & and tweeting about it.  

Or just send the link to someone you know who might really benefit from it. 

Busted pancreas or not, we all know someone who’s suffered and struggled with an eating disorder or who’s still struggling with an eating disorder - And knowing that they are not alone and that there’s help out there makes all the difference~

FYI: I was going to post up-teen individual links to other posts written about this subject in the dblogpshere - There's a ton of amazing ones and was in the process of gathering them all - And secretly nervous that I was going to miss linking to them all. But then I remembered that an incredibly detailed list of other amazing Diabetes blog posts written about National Diabetes Awareness Week already existed & can be found over at: http://diabetesadvocates.org/c/eating-disorders-and-diabetes-everybody-knows-somebody/
PLEASE CHECK THEM OUT!! 

#IWishPeopleKnewThatDiabetes

Today's post is inspired by Kyle Schwartz, a third grade teacher in Denver Colorado who created a trust building lesson plan for her third grade class called. “I wish my teacher knew.” 
The honesty in the notes the students wrote are going to hit you in the heart.   
Kyle shared some of her students notes on twitter with the hashtag, #Iwishmyteacherknew.  
Soon, thousands joined in the conversation and many teachers feel that Schwartz lesson plan changed the landscape of the classroom, encouraging trust and honesty between the students and teachers. 
According to interviews, Schwartz hopes that #Iwishmyteacherknew will encourage a dialogue that will help teachers connect students and their families with resources they need.
I've given the Kyle's trust building lesson a diabetes spin a'la "I wish people knew that diabetes.....," and with the hashtag -  #Iwishpeopleknewthatdiabetes. 
Hopefully you can relate and share your own wishes~ 
######

#IWishpeopleknewThatDiabetes

 I wish people knew that diabetes is lot harder than PWDs (people with diabetes) make it look. 
 I wish people knew that diabetes is NEVER ENDING - and that I haven’t had a day off from type 1 diabetes in 13,690 days  - nor did/do I get time from diabetes for good behavior, national holidays, weddings, funerals or mental health days. 

I wish people knew that diabetes is hard - REALLY HARD - and that there are days when the last thing I feel like dealing with is diabetes - but I don't have a choice, so I do. 

I wish people knew that diabetes can be exhausting. 

I wish people knew that because of diabetes, when I look at the food on my plate I see numbers first, food second.

I wish people knew that diabetes wasn't my fault.

I wish people knew that diabetes IS NOT a character flaw and that all people living with diabetes and regardless of the type, are amazing. 

I wish people knew that diabetes makes me cry sometimes.

I wish people knew that my diabetes has caused me a tremendous amount of guilt since I was 8 years old.

I wish people knew that diabetes causes me to say "I'm sorry," even when I'm not. 

I wish people knew that even when you do everything right with diabetes, your blood sugars can still eff with you. Same goes for diabetes complications.

I wish people knew that people with diabetes usually have a really twisted sense of humor.

I wish people knew that diabetes complications can happen - And that people shouldn't judge someone because of their diabetes complication(s).

I wish people knew that people with diabetes can have, had are having children - And that throughout the ages, PWDs have become parents. My two aunts with type 1 had children in the 1950's, so did my dad. My oldest sister with t1 had 3 children in 1976, 1980 & 1990.  
And that today women with diabetes in the DOC and beyond are having boatloads and boatloads of beautiful children - and those wonderful women with diabetes worked (and are working,) damn hard to deliver those beautiful and healthy children. 

I wish people knew that diabetes is not the reason I don’t have children. 
Life is the reason I don’t have children - it doesn’t mean I didn’t want them, because I did and I do and that it breaks my heart that I don't.
But if diabetes is the reason for someone not having children - You shouldn't judge or ignore them for not having children, diabetes or not - And you should remember that for many, it's a very personal and potentially painful subject. 

I wish people knew that I am more the sum of my parts- including my beautiful, busted pancreas. 

I wish people knew that diabetes gives you boatloads of strength and empathy. 

I wish HealthCare Professionals who still tell their patient(s) with diabetes that they "noncompliant," would stop using that term - it's offensive and defeatist and most likely will not garner the effects the HCP was hoping for hoping for. 
I wish they'd say: I know you struggle with your diabetes - lets make a game plan and work together to get you up to speed.  

And I wish they'd go a step further and let their patients with diabetes know that they are not alone and suggest seeing that they see a Certified Diabetes Educator and a therapist. Encourage them to join online communities & read diabetes blogs so they can find peer support and encouragement. 

I wish people that just because I wear an insulin pump, doesn’t mean I have the bad kind of diabetes - It means I have the kind of diabetes that makes shit gold ingots. 
Kidding! It just means my body doesn’t have the ability to produce insulin.

People with diabetes need insulin to live - and I’ve found that wearing a bionic pancreas clipped to my hip works for me. 

I wish people who worked for my insurance company realized what an infusion site actually was BEFORE they denied me my fourth box of infusion sets. 

 And I wish people who worked at health insurance companies realized that like a person who makes their own insulin, my body requires a different amount of insulin EVERY DAY - And that tile floors can and most almost always bust insulin bottles BEFORE your days before your refill is due.

And I wish my insurance company (and yours) realized that a 30 days worth of pump supplies does not equal 10 infusion sets - because life, in the form of deadspots, doorknobs, SPANX, exercise and million other things get in the way and 10 X 3 most certainly DOES NOT = a 30 day supply.

I wish people knew that the cupcake I’m just about to eat required copious amounts of testing my blood sugar and carb counting - and I will continue to test my blood sugar like a mad woman for hours, afterwards. 
And yes, I can and will eat that cupcake, because I’ve done the work to eat that cupcake. 

I wish people knew that cutting out white foods, drinking miracle water and downing massive doses of cinnamon WILL NOT cure my diabetes. 

I wish people knew that insulin is NOT A CURE for diabetes, but insulin has saved millions of lives and I'm grateful to have access to it every damn day. 

I wish people knew that insulin is lifesaving and that there are so many people around the globe who desperately need insulin, but don't have access to it. 

I wish people knew that after 90 plus years, insulin is still ridiculously expensive  - even if you have insurance. 

I wish people knew that diabetes is indeed a family affair and that parents, siblings, spouses, extended family, and friends who are family, have their own diabetes challenges and struggles. 

I wish people knew that every person with diabetes does try - and that my sister Debbie did try - she just didn’t have the right emotional tools or diabetes technology back in the Diabetes Dark Ages to succeed - And I wish I'd realized that sooner and had been more patient.

I wish people knew that diabetes and blood sugars factors aren't so cut and dry as most think and I wish people knew that there are at least 22 things that contribute to blood sugars. 

I wish people who wrote sitcoms actually wrote funny/truthful diabetes jokes, instead of offensive and stereotypical jokes. 
Diabetes is not punchline and your offensive jokes directly affects funding for the diabetes cure. 

I wish people, including healthcare professions, knew that the diabetes online community exists and is beneficial to every person living with diabetes and their loved ones. 

I wish people knew that diabetes requires emotional support as well as insulin. 
I wish people knew that Diabetes Burnout is REAL. 

I wish people knew that the only thing I can’t do because of my diabetes is make insulin, everything else is GAME ON. 

I could go on, but I want to know about what you wish people knew about diabetes - I'd really love and appreciate your thoughts on the subject - lets get the dialogue going! 


Addendum: On Wednesday, April 22nd, YOU CAN KEEP THE CONVERSATION GOING. 

Also, please checkout http://mydiabetessecret.com  - a place to share heartfelt & anonymous D secrets in a safe/supportive environment. 

Here's What I know

Here's what I know.

I know what it's like to be a child with diabetes, who grew up and didn't know where to turn when she became an adult with diabetes.

And I know that some damage was done.

I know what it's like to have your father breakdown and sob on your shoulder at your sister's funeral, because his daughter died from Type 1 diabetes.

I know what it’s like to look at her face lying in the casket and see your own.

I know what it's like to learn from parents of children with type 1 diabetes - They share with me what my parents would not.

I know what it's like to be an 8 year old who was told the cure was 10 years away, and I remember exactly what I was thinking as I blew out my 18th birthday candles.

I know what it feels like to be in college and suffer from diabetes burnout and isolation.

I know what it's like to be well past college and suffer from diabetes burnout and isolation.

I know what it was like to live in the Diabetes Dark Ages, before the knowledge and power that technology brought us.

And I know some of the causalities of the Diabetes Dark Ages by name.

I know that I will crawl through glass on my knees for a cure and I will continue to help and support any organization that is working towards that cure with every fiber of my being.

But as person who knows that the world is a very lonely place when you turn the corner and become an adult with type 1.

I know that I will also support organizations that will make the world for adults with type 1 less isolated and more welcoming.

And I know that I love and respect my diabetes family very much and I want them to love and respect one another.

To quote a very wise man Named Jeff Hitchcock: Let's all remember that we are not the enemy. The enemy is diabetes.

Dear Diabetes Orgs & Society As A Whole

Yes indeed we grow up- CHEERS to that!

Dear Diabetes Orgs & Society As A Whole:

Well, its official (especially after my last few birthdays) I’ve been a grown up for quite some time and in some circles, I'm considered a bona fide lady - and I use that term with a wink and a smile.

I am no longer considered a cute & fuzzy child with type 1 Diabetes.

Here's the thing; while I still have a child like wonderment when it comes to cupcakes and manatees, and actually uttered the term “Ohhh, look at the Bunny!!” when I saw one running across the street the other night in an urban area, this former child with type 1 has grown up, like MILLIONS of my type 1 compatriots.

And on a side note: Growing up with Type 1 Diabetes is never a cake walk (no pun intended,) but for those of us 35 and over, it was quite the challenge.

We survived the archaic time in history (occurring after the Diabetes Ice & Prehistoric Ages) known as the Diabetes Dark Ages.

A time when “checking your sugar” meant urine testing, which required fizzy blue pills and test tubes that burned our fingers. When we needed to test on the road, Urine Test Tape was slightly less messy and definitely more portable, but just as inaccurate.

Only three types of insulin existed, Regular, Lente, and NPH, and there was no such thing as sliding scale o insulin.

Carb counting was unheard of and EVERYTHING super delicious was off limits.

It wasn’t easy, and many suffered complications from living in those dark times.

But I digress...

We, ALL the former children with Type 1 Diabetes, managed to grow up, and that’s a wonderful thing!

It's also a testament to not just "us", as people with diabetes, but to our parents and their never ending devotion to us- their children with Type 1 Diabetes.

We’ve transformed from children with type 1, into adolescents, and then to teens, and in what seemed like a New York minute, we have morphed into adulthood, just like the rest of the society.

We find jobs; we find (or our looking) for significant others. Many get married and have families.

We work the 9 to 5 daily grind and bitch about taxes, and the cost of our diabetes health care. We take care children and aging parents, while juggling all that life throws our way, including managing our diabetes 24X7.

We exist and are productive members of society.

So why don’t you remember us more?

Bottom line, we’ve done a great job managing not only life, but life with diabetes.

If we hadn’t, we wouldn’t be here.

Kids with diabetes grow up and become adults with diabetes.

Don’t forget that fact, or us.

We exist, and will continue to do so.

Thanks for hearing me out!

Your friend,

Kelly Kunik

P.S. Inspired by all those type 1's who have grown up; like Leeann & Hannah.

Those who didn't have the opportunity,

and those who are are still cute & fuzzy~