An Interview With Jerry The Bear

Recently I had the opportunity to interview Jerry The Bear, a precocious bear with diabetes, who tests his own blood sugars, takes insulin shots from a pen, counts carbs & and helps children with diabetes become empowered and own their diabetes.
I'm all about D education, D buddies, not feeling alone and empowering others, including kiddles, when it comes to people with diabetes owning their diabetes!
Sidebar: How cool would it be to see a Gerry The Bear in every Peds Endo waiting room!
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Jerry is an interactive BWD (bear with diabetes) who helps children with diabetes navigate life with diabetes.
www.JerryTheBear.com

**Jerry is currently 4 years old

1. Jerry, how old were you when you diagnosed with diabetes?

I was diagnosed at 2 years old! My parents were worried because I was tired all the time and drinking a lot of water. It was scary when the doctor first told me that I had diabetes, but now it’s just a part of each day!

2. What's with those cool looking special sensors on your paws & What exactly do they do?

My paws are just like your hands! You check your blood glucose levels by your fingertips; I use my paw tips! If you press the sensors in any of my paws, you can see what my blood sugar level is - whether I’m normal, high, or low. I make sure I rotate my fingertips. Also, when you’re reading a story, you can squeeze my hand to turn the pages.

3. There's a lot to learn when it comes to living with type 1 diabetes, and rumor has it that you're a really good type 1 diabetes teacher/pal with lots of cool D teaching tools.  Care to elaborate?

Ever since I was diagnosed with diabetes, I’ve wanted to help out other friends who have t1d! I check my bg level, take shots of insulin, and count carbs just like any kid with t1d does, and I want to make sure that other kids don’t feel alone and can learn with me. Since I’m an All Star champion (it’s like the mini Olympics in my hometown), I tell my friends how I managed my diabetes during training!

4. Sometimes children (and grownups for that matter ) are afraid of needles - I know that when I was first diagnosed with diabetes, I was scared to death to give myself a shot.  Any advice on that subject?

Needles can be scary--I know I was scared at first! But then my nurse educator, Ms. Berry, told me how important it was for me to take my insulin. I knew that if I wanted to train for the Olympics, I would have to be very healthy. After a while, I was so used to taking insulin that I didn’t even notice them!

5. What's your favorite "bolus worthy" foods? For the record, I love cupcakes, fruit and nachos, but not together ;)

I love strawberry shortcake because strawberries are one of my favorite fruits!

6. Sometimes children feel like their diabetes is their fault, which totally isn't true. Do you ever have those feelings?

I can totally understand some children feeling that way. I didn’t feel that way since I was too young to understand Diabetes.

7. How is your sister Isabella doing re: your diabetes. I have no doubt she worries about you and tries to help out anyway she can. Siblings of CWDs & PWDs (Children With Diabetes & People with Diabetes) are awesome!

My little sister Isabella is my hero. She doesn’t have diabetes but she learned about T1D with me while I train with my mom and my educator. When I’m feeling low, my sister gets me a juicebox or lets my mom know.

8. What's next for you and your pals?

I love listening to inspiring stories. I want to meet other folks with T1D and get to know them better! I always want to help!

9. If someone wanted to buy a Jerry The Bear, how would they go about doing that?

Oh, I would love a new best friend! If anyone out there wants to take me home, they can visit www.jerrythebear.com. At the bottom, there is a button that says “Buy Jerry!” Just press that, and I’m yours!

10. Jerry, thanks so much for the interview - Anything else you'd like to share with my diabetesaliciousness readers?

As an All Star champion, I want to let all the kids out there know that having type 1 diabetes will never stop me from doing anything or from dreaming big--and it shouldn’t stop you either.

Diabetes OCD: My List Grows - My Obsession Continues~

Here's the thing - I know OCD is very real and difficult disorder to live with it - I'm not making fun of it or belittling those who live with it. 

But I do think that living with diabetes causes OC and OCD like idiosyncrasies - because seriously, how can it not? 
Diabetes makes us obsess over all sorts of things related to out life with diabetes. And that's a #fact. 

So yeah, I have a bit diabetes obsessive compulsiveness - I don’t click my heals three times every time I test my blood sugar or anything like that - But I do have some diabetes weirdness.  I wrote about some of my diabetes OCD involving ziplock bags; juice boxes, lancets, test strip box neatness, etc  a while back - And you can read my original post re: my diabetes OCD weirdness, HERE. 

But I’ve noticed that I have a few more things (OK, D compulsions) that I have and should add to my  previous list.  

For instance: When I start a new infusion set, there's a good chance that I end up filling my cannula with air twice. 

Like, I’m always afraid that I’ll forget to do that ever so important step and be left without the ability to syphon insulin from my pump. And sometimes I get distracted by a phone call or a pretty shiny object and I can't remember if I filled my cannula up yet. 

Not to mention the fact the whole filling up and starting a new reservoir thing has become so second nature to me that sometimes I can't remember if I doing the filling of the cannula part, (and even when I end up back to the blank screen) so I end up doing it twice.... Just in case. 

And yes, I know I can check the history - And sometimes I do - And other times, I just refill the cannula. 

I always make sure I have spare infusion sets whenever I switch out my handbags out.  I might forget my license or my keys, but I damn near almost always remember to throw a spare infusion set into the bag. 

Then there’s the whole making sure I have glucose tabs and  juice in the house at all times in case of low blood sugar, thing. There are some days when I’ve put off food shopping for so long that I just have a few yogurts, maybe some cheese and something that was once edible but is no long recognizable in the fridge - Not to mention a shitload of condiments. And my freezer might only have a1/2 a left over Dr. Oetker frozen spinach pizza ( I can totally bolus for it and achieve blood sugar nirvana) and a bag of frozen edemame, but you can bet your bottom dollar that I have at least two 48 ounce bottles of juice in my pantry and at least two full bottles of glucose tabs. 

I read labels like some people read books. If I’m interested in buying a food product something I’ve heard someone else talk about or I've seen on TV, I’ll google before I even go to the store just to check the carb count out. 

And lets not forget to mention my Diabetes On-Line Community obsession/addiction- I'm always online, reading blogs, chatting or advocating - But the DOC is one obsession/ addiction is one I will gladly keep and encourage others to join! 

YOU GUYS ROCK!!!!

So yeah, I’m kind of weird- and I most definitely have some Diabetes Obsessive Compulsiveness - But I know I'm not the only one. 

How do your diabetes obsessive compulsions come into play, have you developed more as time goes by or has your Diabetes OCD changed? 

Diving In And Washing Our Worries Away~

When I found my friends on the beach on Sunday, I said my hellos, put down my chair and bags, caught up on all the gossip and 15 minutes later, finally made my way to the shoreline to dip my feet in the Atlantic Ocean & checkout the water temp. 

It was warm and wonderful and as always, the ocean made me smile. I scanned the waves for people I knew and spotted my friend's daughter Brown Eyed Girl, diving over and under every wave she saw. 

And as soon as she saw me at the ocean's edge she shouted: KELLY, TAKE YOUR PUMP OFF SO WE CAN GO SWIMMING!

I told her I'd be back in a flash and then I went back to our beach chairs and placed my pump in a ziplock bag, then in nylon case, which went into a larger ziplock bag, which was placed in my cooler. 

I walked back to the shore line and Brown Eyed Girl and ran up to me, grabbed my hand and pulled me towards the waves, and the two of us jumped over them and laughed out loud as we walked deeper and deeper into the ocean.

Brown Eyed Girl kept telling me to dive under every wave that was heading our way. But as much as yours truly loves swimming in the Atlantic, it always takes me a good 5 (OK, more like 6) minutes or more before I dive right in and under the white caps. 

The air temperature was colder than the water and windy to boot, which always makes submerging a little more difficult, no matter how much a person loves the water. 

Brown Eyed Girl: COME ON KELLY, JUST DIVE IN - I WANT TO SWIM WITH YOU!!!

Me: Hold on Lovebug, let me get used to it. And why the big rush kid, we have all afternoon. 

Brown Eyed Girl: Just dive in and you'll feel warm as long as you keep swimming. 

And of course I had to laugh because she was right, about both the water temp and the "keep swimming" part, because I haven't stop swimming in 36 years of living with diabetes -even when I felt I could barely paddle.

And then I saw a wave off in the distance that was going to crest perfectly and I knew that I was going to be diving under it in about 10 seconds - I looked at Brown Eyed Girl and said: There's my wave, I'm going under!

And she looked up at me and smiled - And then she looked down toward my abdomen and her smile dropped and her eyes got even bigger as she spied the infusion site outline under my black swimsuit & at the very second I knew exactly what was going through Brown Eyed Girl's mind. 

Brown Eyed Girl: Kelly, don't go under, you'll hurt your pump - DON'T GO UNDER, KEL.

I ignored the ocean and scooped Brown Eyed Girl up in my arms and swung her around, just as the perfect wave crashed all around us and told her: No worries, girly, it's just the part where my insulin pump tubing goes in - the pump and tubing are back in the cooler. 

Brown Eyed Girl: So it won't hurt your pump to get that part wet? 

Me: Nope, but thanks for looking out for me. 

Brown Eyed Girl: I love you - I always double check to make sure you're pump is off when you come into the ocean with me.

Me: I love you, too, very much in fact. And thanks for always double checking! Now, let's go swimming and wash all our worries away. Hey Lovebug - Last one under is a rotten egg!!!

And then we both dove under the next wave and washed all our worries away - And while I'm not really sure which one of was the rotten egg, I do know that  we were in the ocean for darn close to an hour, swimming and diving and body surfing the waves like we were born with scales and fins. 

And I know for a fact that a wonderful time was had by all~

Diabetes Art Day #StripSafely Edition: Navigation

Diabetes Art Day - StripSafely Edition:

A sea  of glucose test strips in the ocean of my diabetes life~

A sea of glucose test strips in the ocean of my diabetes life,

Spindrift's of swirling numbers that never stop  -

Continuous swirling test strips and bg numbers that leave me spinning like a top. 

Numbers generated directly from my blood and the diabetes technology that are the tools to live this diabetes life.

Tools that are my blood sugar compass, Diabetes GPS, and life preserver, all rolled into one - 

Telling me how to navigate with insulin, in order to keep this diabetes life from coming undone. 

Navigation demands accuracy in all dimensions, be it by land or air or sea - 

But especially in glucose test strips and meters, accurate blood sugar coordinates are key.

And Right now glucose test strips are  anywhere between 10, 20 and some say as much as 40% off their marks - 

And that leaves people living with diabetes to navigate the Diabetes Ocean in the dark. 

AND THAT IS UNACCEPTABLE.

Kelly Kunik~

Diabetes navigation tools~

Spinning Like A Top & Monday August 26th is A Special Edition Diabetes Art Day: The #StripSafely Edition

OK, it's been a crazy week in Kelly's world and I'm so sorry for being somewhat MIA in the D blog-O-sphere. 
But when opportunities present themselves as several short term freelance work projects, diabetes or not - You have to go for them - even if they cause temporary chaos in your world in all dimensions - Including schedules, sleep, and clean laundry.  
Next week marks the end short term work projects I was recruited for - and things will go back to normal. And I'll miss the craziness, because even with all the chaos. Being crazy busy is a blessing. 
Crazy busy is a good thing - even when it makes you spin like a top. Spinning is a from of cardio, right? So spinning like a top should totally make me burn calories an lower blood sugars, right?? 

Ironically and not so ironic, diabetes has been cooperating - except for few nasty lows and a couple highs.
Making diabetes work in our schedules is a continual challenge and sometimes it's damn annoying!
But making diabetes work into busy and every changing schedules is doable - It just requires a lot of glucose testing. 
Speaking of glucose testing, Monday August 26th Marks a special Diabetes Art Day - The StripSafely Edition.  Clink on the previous links and learn all about it - And also see some inspiring Dart!! 
And gather up your used tests trips, teststrip bottles, test strip boxes, and create something based on your feelings regarding glucose testing, accuracy & everything else in between! Also, art takes many mediums so if you find yourself low on tests trips - Draw a picture or write a poem about your feelings and dust them with whatever used teststrips you have. 
I for one welcome a little art therapy - And I need it! Embrace your inner Picasso and go for it!

Tonight @ 8pm, EST - The DOC Will Mass Tweet Their Reps In DC To #StripSafely!!

I know I've been obsessed with stripping safely as of late - But I vividly remember the days of urine testing and fuzzy blue pills. I remember meters taking 3 minutes to test and lancing devices that hurt like hell. And lastly I remember the damage that was done to people I knew and loved & who are not longer here, because we didn't have diabetes technology not so very long ago.

Tonight, at 8pm (directly after the Diabetes Hands Foundation webinar with Act-Up's Peter Staley, register HERE and directly before tonight's #dsma chat) the twitterverse is going to go more than a little nuts as #StripSafely kicks off their twitter campaign en mass & the DOC tweets their reps in Washington to #StripSafely!!!
And you can be a part of it - All you to need to do is go HERE, find your State Reps, click after there name where it says :"Tweet about meeting", then work your #stripsafely tweet magic!

Here's my tweet: 

.@RepLoBiondo Pls send staff to Diabetes Tech Society Meeting on 9.9.13 w/ @US_FDA & Help diabetics #StripSafely http://is.gd/wya8oi http://is.gd/wya8oi

And you can also tweet your reps a link to the this StripSafely letter: http://www.stripsafely.com/?page_id=618

 Also,please, please, please RT other #StripSafley tweets so #stripsafely can be trending on the twitter. 

Diabetes doesn't care how you vote or what political party you're affiliated with. Diabetes doesn't exclude you if you're a Republican, a Democrat, Independent, or a member of any other political party. 
And people with diabetes need friends in Congress & we need them to help us convince the #FDA that test strip/meter accuracy is crucial for people with diabetes to maintain our good health & our safety! 

Join the #stripsafely twitterlution & lets all get our tweets on tonight! 

To learn more about StripSafely tweet campaign, click HERE & to read their blog post re: the #stripsafely tweet campaign, click HERE. 

StripSafely - And Get Your Reps In Congress To Do The Same!

My fingertips (especially my left hand ) are callused, bruised and filled with tiny pinhole scabs because I test my blood sugars between 7 and 10 times a day, everyday and without fail. 

I test because glucose testings tells me where I am, what direction my body (glucose) is heading towards, even if it's not where I want to be. But thanks to glucose testing, I can test and correct. Meters and test strips act as my Diabetes GPS - and without them I would be lost.

I remember the days before glucose testing. I remember clini-test fizzy blue pills in urine filled glass test tubes that burned my fingertips and would shatter if you dropped them. - They came with a portable and more discrete counter part called Tes-Tape which was basically a strip of tape you peed on to find out what your"sugar" was.

Those urine readings were measured in colors and percentages instead of actual numbers. They were anything but accurate, but it was all we had.

When glucose meters came to be in the 1980s, they were game changers for sure, albeit slow and painful ones. 

Lancets literally started out as carved pieces of slanted metal that would leave actual cuts on your finger. Followed by a new and modern harpoon auto-let that hurt like hell, followed by the less evasive but still painful lancet clicker pens. 

And my family and I actually  had to go to our local pharmacist to take a class to learn how to use our glucose meter. 

Our shared meter (3 of us used it,) costs hundreds of dollars, wasn't covered by insurance and took three minutes to test our blood glucose and came with an instruction book that was over 100 pages long.

My father silently took notes on the technical trickery and worried about the price, as the pharmacist slowly and methodically showed us how our meter worked. 

That first glucose meter was the size of a brick and took 3 long minutes to test our blood glucose. 

It was supposed to be worth it - It was supposed to be high tech and more accurate and it was - Technology made our lives with diabetes healthier. 

Diabetes care is technology based - And diabetes technology in the form of meters, insulin pumps and continuous glucose monitors are how we stay healthy. 

Glucose testing tells me how much insulin I need to take (or not,) and it's supposed to keep me ( us) safe. 

I test before and after meals, before I drive, swim, or workout. I test when I'm sitting on the couch - Just to see where what direction my glucose is headed in.

I test because I want a healthy future filled with love and family and lots of laughter.  

Over the years meter companies & the FDA have worked with together and have come up with a margin of error of  -/+20% off the mark in either direction. Not great, but it's something. 

Currently meter companies & FDA are working together to get the 20% of the margin mark changed to -/+15%. 

But as of today, 25% of the meters out on the market fail when it comes to the 20% in either direction range. 

And many feel that 20% is a conservative estimate, and that number could be as high as 40%.

Like many, I not only believe that 20% in either direction is incredibly conservative - I've experienced it first hand.

Last Monday night I tested three times in a row and had 3 vastly different numbers 200, 226, and 234. 

After I input my blood sugar 7 carb into my insulin pump for each one of the numbers, resulting in 3 vastly different insulin doses:  4.20, 5.00 & 5.80

3 different doses of a prescription drug that people with diabetes rely on to stay alive - And a drug that is also outlawed in professional sports, unless the athlete has diabetes. A drug that if not administered in its proper doses to a person with diabetes can cause cause either DKA or Hypoglycemia - And  both can be deadly. 

Then there was the 119 blood sugar before lunch a few weeks back that caused me to break into a cold sweat - and get that wobbly feeling in the pit of my stomach. It felt more like a 62, and I didn't dare take insulin to cover my meal. 30 minutes after eating I was 89 and it was scary & frustrating. 

Here's the thing: I (we) shouldn't have to guess when it comes to my blood sugars or my insulin.

To quote directly from the StripSafely website: At a recent public meeting the FDA acknowledged that there are some 510(k) cleared blood glucose (BG) meters and strips that do not meet the accuracy standards for which they were approved. There is currently no clear course of action to insure people with diabetes are using blood glucose strips that meet regulatory requirements."

And now that Medicare and competitive bidding are coming into play, the potential for inaccurate off brand test strips to flood the market is a very real threat.  

People with Diabetes shouldn't have to guess when it comes to our blood sugars or our insulin dosing.

If a flu vaccine was found to be 20% to 40% off the mark, without question it wouldn't even be allowed on the market because peoples lives would be at risk.

So why is it OK for people with diabetes lives and future health to be put at risk with test strips that are anywhere between 20 and 40% off the mark?  

IT'S NOT. 

 Which is why I'm a huge supporter of the StripSafely Campaign - Started by the YourDiabetesMyVary Blogger, Bennet Dunlap.

Every single person living with, or who loves someone living with diabetes needs to get behind StripSafely & write their congressional reps and tell them that not only don't people living with diabetes want our health compromised by inaccurate glucose strips, we also want them to attend Diabetes Technology Meeting on September 9th in Bethesda, Maryland so they can learn and become empowered about this issue first hand. 

I'll be writing and sending out my letters to my Congressmen at both their local and D.C. offices this weekend. 

Worried about writing the letter? Don't be. You can find a wonderful sample letter that you can actually use, HERE, as well as links to contact your elected officials.

You can join others fighting to  StripeSafely by clicking, HERE. 

And you can tweet about #stripsafely  - Christal over at ThePerfectD has twitter handles to send suggest tweets to, HERE.  

We are worth it, your diabetes voice makes a difference, use it and be heard!

My callused, bruised & pinholed fingertips.