My Take On The Diabetes UnConference

Big thanks to Christel for turning advocacy into action and making The Diabetes UnConference into reality!
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The 2015 Diabetes UnConference attendees~

It’s taken me a while to wrap my head around The Diabetes UnConference and write a post for many reasons. 

1. It was emotional in all dimensions - And for some reason, it’s really hard to articulate those emotions
2. I wanted to make sure not to divulge anything remotely private because we as a group/collective (see what I did there,) decided that there would be a Social Media blackout/moratorium so that the people attending had a place to share their most private diabetes thoughts and fears 
3. There are so many wonderful posts have already been written on the subject, what could I say on the subject that hasn’t already been said?  

But every experience/voice matters - So, here's my post.  

The Diabetes UnConference was a weekend filled with rapid fire discussions on topics and emotions that all of us have have when it comes to living with diabetes.
The agenda was created by every PWD in the room and the list of topics stretched out across the wall - I kid you not. 
I tried taking notes, but early on I put my pen down and focused on listening to who was speaking and what what being shared, while observing the amazing that was happening all around me. 
 I met people who had lived with diabetes for over 50 years and I met people who had lived with diabetes for only a few months - and folks who ran the gambit in-between and I learned from every single person in the room.
FTR: I even wore my Lilly 25 year medal for the first time ever, during the sessions because if I was going to wear my diabetes bling anywhere, it was going to be in a room filled with PWDs!
And there was a hell of a lot to learn, because collectively, our group had damn near 2000 years of diabetes experience. 
Things bubbled up and came to the surface and we were able to share; listen, learn and support one another in a safe and protective environment. 
I observed people who had never been in a room with another PWD before find their tribe and their voices. 
I was able to meet people in real life that have had my back online for years and who I already considered friends. But to meet life, to hug and to hold them, to laugh with them -THAT WAS AMAZING.  
More amazing, watching friendships form and diabetes confidence bloom exponentially. 
I wish I'd had the chance to talk with everyone - but it seems that each and every conversation I had was so engaging that there wasn’t enough time! 
(Special shout out to those folks I've had some really heartfelt conversations with since the conference!) 

And every once in a while, my mind who travel back to the 2014 Medtronic Diabetes Advocate Forum, where I literally saw the light bulb go off over Christel’s head, or maybe the light bulb went off earlier, but it was the first time I saw it glimmer.   
Anyway, I was sitting in the row directly behind Christel during a discussion about peer support - and I’m totally paraphrasing here, but Christel said something like: We need to have conference for people with diabetes, and then quietly she said - An UnConference. 
And now there I was, sitting in and being part of, the first inaugural Diabetes UnConference - watching people with diabetes engage, learn, share and support one another - and my eyes started to leak, but in a really wonderful way. 
Because I had witnessed advocacy into action and was watching strangers become allies and friends and I was participating in it - talk about overwhelming!
I cried on the plane ride home - And like many others who attended the conference, I blamed the “vegas dust™,”Mike Barry. 

Here’s the thing: I keep the Vegas dust close to my heart and every once in a while, I take it out and sprinkle it like a diabetes Tinkerbell and her fairy dust when I need to feel all warm and fuzzy and to reminded myself of what went down at The Flamingo Hotel not so long ago. 
Bottom line and without giving anything away, the Diabetes UnConference was a place were people with diabetes and regardless of the type, found support in one another. 

Where everyone in the room spoke the language of diabetes fluently and with understanding - And regardless of the dialect.
And I want our dialogues to continue and I want to create/ be a part of new discussions in the process. 

The Asante Snap Insulin Pump Actually Tells You How Much Insulin You've Missed.

I'm currently participating in the Asante Snap trial (Click HERE to learn how you can give it a no commitment and free try,)  and I'm really enjoying it.
One of the features I find myself utilizing most is the 'Stop Pump/Insulin Missed' features.
Everyone who wears a pump, stops/suspends it from time to time - shower, swimming, sex (or not,) etc.
Here's the difference with The Snap. When you turn it back on, it tells you exactly how much insulin you've missed during the time the Snap's been turned off.
Little things mean a lot and I utilize that feature every single day - it really surprises me how much (and sometimes how little,) insulin I've missed. It's also made me more aware of my insulin sensitivity. 

I've come to rely on 'Stop Pump/Insulin Missed' features and I've noticed a difference in my blood sugars when I make up the missed insulin with a "Now Bolus," especially after I shower. 
I've also found it extremely beneficial when I've chosen to suspend the pump during a nasty low. I take the missed insulin into consideration while monitoring blood sugars after said nasty low, in my attempts to navigate around/avoid super post low blood sugar spikes a few hours later. That's what works for me, but your diabetes may vary. 
And I like the fact that I control wether or not to bolus for the missed insulin. 
Again - your diabetes may vary and this feature allows for flexibility. 

Side Bar: "Now Bolus" basically is an instant bolus feature that unlike the The Snap's 'Smart Bolus," doesn't ask for your blood sugar & carb count. 
Side Bar 2: The Snap also has an alarm that goes off every 15 minutes once you've stopped it and until you turn it back on.

Also: If you've actually stopped the The Snap long enough to miss a Basal - it will tell you that. I haven't stopped my pump long enough for that, but it's incredibly important info to have in case that were to happen. 
Anyway, I thought I'd share The Snap's "Stop Pump/Insulin Missed" because I find the information crucial and dare I say.... very cool~ 


Full disclosure: I sit on Asante's Patient Advisory Board.
With that being said, all diabetesalicious thoughts on this blog and off, are mine and mine alone~

Wait, What's Behind That Door?

So when I travel for non diabetes related reasons, (and for diabetes related reasons, come to think of it) I always seem to find things that immediately remind me of the DOC. 

My recent trip to Delray Beach was no different~

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I was in Delray Beach, Florida this past February, visiting with my family and I stayed at a grand old Historical Landmark Hotel called The Colony .

Many times over the years, I've stayed at The Colony with my mom and sister - I have good memories when it comes to The Colony - really good memories - and it's one of my favorite hotels on the planet. 

Old fashioned grandeur, daily breakfast in the atrium every morning, a band on the veranda almost every night and a well equipped bar right off the porch. 

A fab beach club & beautiful and reasonably priced rooms with a grand old Florida feel. 

Also: The Colony is smack dab in the middle of EVERYTHING. 

 And I LOVED and appreciated spending time with my extended family and saw them every day - And I even managed to break bread with of a couple of my DOC family pals. 
The first night at the hotel, I walked through the one of the grand all purpose rooms off the main lobby and saw a strange light illuminating from the door - It was magical and mystical and I thought I recognized a familiar image. 

What the heck was illuminating from behind this door? 

Wait, WHAT? 

It is!

I don't even drink Diet Coke, or any diet soda,  but of course I thought of all my
Diabetes Online Community Diet Coke fanatics (dare I say freaks) when I saw this!
And for some reason, I found this whole concept to be cool - REALLY COOL and all sorts of DOC warm and fuzzy. 
Also: *CLINK* 

This Trip, A Philly TSA Agent Made Traveling With Diabetes Way LESS Stressful!

Traveling with diabetes can be a challenge, incredibly frustrating and down right maddening. And when crap happens, I write about it. 
So when good stuff happens when it comes to traveling and diabetes, I write about that stuff, too. 
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So last week I had like the nicest experience, EVER with TSA at Philadelphia International Airport and en route to the Diabetes UnConference in Vegas ( post on that amazing experience to follow,) and I wanted to share it.  

As I waited in the security line with a large bottle of water in hand and my electronic pancreas clipped to my hip, I looked around and asked the closest TSA Agent near me for a visual inspection for my insulin pump. 

The Agent, a 20 something African American woman with a reassuring smile and a kind voice told me "no problem" re: a visual inspection of my pump & told me that my water bottle qualified for a visual inspection, too.

She also looked me straight in the eye, placed her hand on my shoulder and said: NEVER take 'no' for an answer re: a visual inspection for your insulin pump or your water! 

It’s your right to have both visually inspected, don’t ever let anyone ever tell you different - don’t  ever let them tell you no! 

She was incredibly kind, understanding, knowledgeable and professional and I really appreciated that she had my back. 

I wanted to give her a huge because she made me feel like a had a diabetes ally on my side, because I did and she most certainly was.
Nine times out of ten when it comes to TSA and a visual inspection, I end up having to fight for one. I’m told I don’t need it and that It’s a lot of unnecessary work  - but I still fight for it until I get one.

 And it was SUCH a different experience than THIS HORRIBLE  moment at Philadelphia International, or THIS MEETING OF THE MINDS at the airport in San Diego. The fact that I didn’t have to fight, explain the reasons why and could breathe a sigh of relief made the whole airport/flying with diabetes and dealing with TSA, more pleasant. 

Look, I’ll be the first to write about traveling with diabetes and TSA snafus, but I also want to point out the spot-on and outstanding experiences with TSA Agents who make it a point to walk the walk, know the intricacies of their job & do an outstanding job. 

YOU ROCK and great job, AWESOME TSA AGENT - And much love and appreciation & a big THANK-YOU from the bottom of my busted pancreas! 

Yoga Pants Save The Day - And My Precariously Placed Infusion Site!

Only my love of the Diabetes Online Community, would get me to show a belly shot!
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Monday morning, as I was getting dressed and before I headed to the Flamingo Lobby to say my last Diabetes UnConference (more on that incredibly amazing experience very soon,) goodbyes and head off to the airport, I realized that I needed to change out my infusion site.

My new infusion site went in easy and pain free and I immediately thought: This site is going to subcutaneously suck insulin in LIKE A BOSS. 

Then I realized that my infusion set connector was facing the wrong way and was directly next to my belly button. 

As in: Precariously close to my belly button. 

As in: It's NEVER been this close to my belly button and OUCH, I know the moment I snap my jeans I will feel a pain like no other, close to my belly button.  

Also: I didn't want to waste the site/ab real estate if I didn't have to. 

Lucky for me, I had yoga pants for the plain ride and leggings, too. I'm a fan of both and for all sorts of reasons. 
No button, no snap and super comfy to travel in. 

Problem solved and pain averted. I wore yoga pants yesterday too, because I was jet lagged, working from home and my blood sugars were more than OK.   

I changed my site this morning and this time, the infusion set connector is no where near my belly button. But only time will tell if it sucks in the insulin like a boss - or just plain, sucks.

Too close for comfort when it comes to snaps/buttons. 

FYI: Currently writing my Diabetes UnConference post - Stay tuned. 

Diabetes Math, Battling Insurance Companies, Dead-Spots & Zombie Infusion Sites....

I always put off changing an infusion set that’s less than 48 hours old - not because I’m lazy, but because of insurance coverage re: my supplies and the lack there of. 
And it drives me crazy. 
In a perfect world, 1 box containing 10 infusion sets  = 1 infusion set every 3 days, which = a 30 day month supply. 
In a perfect world, 3 boxes of infusion sites = a 90 day supply.
But that’s not how any of this works in real life because life isn’t perfect, and life with diabetes is anything but - even when you do everything right - which is pretty damn impossible, diabetes or not. Yep, four boxes of infusion sites every three months gives us a little relief and a little wiggle room and are the keys to our mental and physical health.   
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As I stated above, I almost always hold off changing a less than 48 hour old infusion site when it’s obviously having issues syphoning insulin. 

I don’t want to run out of infusion sites. I don’t have to fight to get more infusion sites from my pump company and I don’t want to have to pay for them. 

But I do. 

I don’t want to battle with my insurance company to cover 4 boxes every three months because my insurance company is all about the math. 
1 box containing 10 infusion sets  = 1 infusion set every 3 days, which = a 30 day month supply. 
In a perfect world, 3 boxes of infusion sites = a 90 day supply.
But in my imperfect diabetes world, four boxes of infusions sites every three months keeps me covered when it comes to real life infusion site occurrences.
Things like:
Skin sensitivity  
Dead spots 
Zombie infusion sites
(Zombie infusions kinda, sorta syphon in the insulin, but not so much. Zombie infusion sites  have you running blood sugars in the 150 to 180 range and require more insulin. And when you do change the site, your numbers go back to normal.)  
Doorknobs 
SPANX killing off a new infusion site within 20 hours of wearing said SPANX 
Yoga pants yanking out infusion sites 
Bungie pumping, pumps that falter and rip your site 
Leg sites that only last 30 beautiful and perfect hours before they crap out for good because leg sites get more action than abdomen sites 
Abdomen infusion sites that are precariously close to pant buttons and jean rivets
Infusion site adhesive that unsticks, ASAP and for no reason at all  
Abdomen infusion sites that inadvertently getting rubbed by handbags and losing their magic sucking in the insulin, power.

I (and by I, of course I mean WE,) shouldn’t have to risk extended damaging our valuable real-estate or elevated blood sugars because of all of the above. 

Nor should we have to choose the lessor of two evils - Using more insulin and risk running out before our insulin Rx can be refilled, or risk running of infusions sites before that RX can be refilled.
So while I don't want to fight for my fourth box of infusion sites,
I ABSOLUTELY DO FIGHT FOR MY FOURTH BOX OF INFUSION SITES - because I absolutely need them. 
I've gone so far as to email my insurance company pictures of what an infusion site actually is, where it goes and what it does, because the people who are doing the denying, have absolutely no clue. 
Why am I writing this post? Because after 3 days of infusion site bliss and lovely numbers, I put in a new infusion site Saturday night, which ended up being placed directly in a dead-spot and had to change it out 2.5 hours later. 
That second site was a zombie site, but it took me until Monday morning to change it because I didn't want to admit it was another site issue - I didn't want to deal with the diabetes math and I was really, truly hoping it was just me requiring extra insulin instead of another site issue. 
And now I'm sharing because I'm thinking that some of you might be able to relate.

Diabetes & Weird Worries.

Today is #dblogcheck day, where we stop lurking and leave a comment on the blogs - The comment can be as simple as "dblogcheck," "check," or whatever floats your proverbial boat~
Living with diabetes has the potential to make everyday things weird and worrisome - if you let it - And try as I might, sometimes I let the weird worries get the best of me.  Here are few examples of my D weird worries as of late - I'm hoping at least some of you might be able to relate to them.
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Last night I was baking, what I was told red skinned sweet potato at 400 degrees in the oven, while sautéing chicken on the stove top. 
When I opened the oven door to check on the potato, I was hit by a wave of heat and ended up clipping my insulin pump to the back of my pants because I was afraid that the heat from the oven would cook my insulin. Then I was worried that I’d already cooked the insulin in my pump because I’d been standing in front of the oven for at least 15 minutes. 
Seriously, am I the only one who thinks that way? 
And then when I took said sweet potato from the oven and split it open, the inside was white. It was a sweet potato for sure, but it was white not orange.

1. I was totally confused
2. I was immediately worried about the glycemic index 

After googling for a good 15 minutes, I found out red skinned sweet potatoes are indeed white inside. 
But I couldn’t find any relevant info on the subject (except that white sweet potatoes lack the beta carotene of the orange sweet potato,) so I ended up eating a quarter of the potato instead of the half I’d originally decided on - Did I mention that it was big ass sweet white potato? 
I didn’t feel like dealing with the carb count or worrying about the potential spike. 
But I spiked big time anyway because then I went all sorts of apeshit crazy and ate a big fat sugar cookie with icing from Starbucks - which I bloused 50 carbs for. 
But did the big ass sugar cookie cause me to spike, or had I cooked my insulin from the 400 degree oven? Or was my spike caused by the crazywhite sweet potato? 
Perhaps it was a trifecta of all three or did my diabetes just flip its bitchswtich?  
So yeah, what should have been a quick and simple grilled chicken salad with a side of sweet potato & a dessert ended up being anything but. 
Also: Something’s in the air re: me and sweet potatoes. The other night I bought again, what I thought was a sweet potato, but it ended up being a yam. 
Sweet potatoes and yams are not the same thing, no matter what the nice man at my neighborhood bodega says. 
Also: Yams are gross. 

Speaking of cooking, I like to watch cooking shows -and maybe when I'm alone in my kitchen, I make pretend to have my own... or not. OK, I absolutely do. 
But I digress.I like to learn new ways of preparing foods. & experience new ingredients and flavors - because I love food. 
Here’s the thing: Halfway through the segment, my focus almost always shifts from the recipe, to the meal’s carb counts, serving size and 9 times out of 10, the chef’s cholesterol. 

I love The Pioneer Woman and nobody loves cheese more than I do, but I worry about her - And that’s my issue, not hers. Ree's doing a kickass job with her family, her life, her ranch and her blog! 
But living with type 1 diabetes for the 37 years automatically makes me see numbers; blood sugar, cholesterol, carb/fiber counts on my plate, instead of the food. 
And diabetes has given me all sorts of "food quirks", annoying food quirks.

Diabetes weird worries aren't limited to food - please feel free to share yours. 
No judgement here  - we are in this together - And we're all weird in our own way~ 

Screw You, Snow: Things I’m looking forward to in the next two weeks~

The weather is craptastical,  it’s bumming me out, driving me crazy and I've developed a wicked case of cabin fever! And of course, the weather report predicts anywhere between 5 and 10 inches (of snow, sickos - get your minds out of the gutter. Also: that's what she said,) in the next two days.  

So for this post, I'm focusing on what I’m looking forward to in the next 14 days to get me through the snow.  

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Daffodils: I need my daffodil fix. Daffodils remind me of spring and my mother and daffodils are resilient. They poke through the snow and show us that nothing is impossible. Daffodils are my favorite - Daffodils personify hope and make me hopeful.

Spring: I’m looking forward to spring and sunshine and seasonal warm weather - I don’t need 80 degrees in March, temps in the high 40s with lots of sunshine and not snowflake in sight would be downright dreamy. 

Tonight's #DSMA chat at 9PM, EST on the twitter. 

One of hour of chatting with PWDs (people with diabetes) about anything and everything!

It's entertaining, fun, and it will get you through your week! 

Log on to twitter tonight & follow the #DSMA hasthag & the moderator, @DiabetesSocMed! 

JDRF Greater Chesapeake & Potomac Chapter’s TypeOneNation Research Summit -Saturday, March 7th in Bethesda, Maryland. 

I’m looking forward to learning about the latest and greatest re: diabetes technology, listening to speakers like Gary Scheiner & Dr. William Tamborlane - Just to name a few of many awesome.  I'm also looking forward to participating in the workshops and facilitating a few. 
Click HERE to learn more about the Summit, then click HERE and sign up to attend!!

The Diabetes Unconference, next weekend (March 13-15) in Las Vegas. 

I’m so freaking excited to attend The Diabetes Unconference - Excited to be surrounded by others “who get it," and who speak the language of diabetes in all dialects. 

Being surrounded by other adults with diabetes and regardless of the type - Being part of my amazing D tribe.  

Viva PWDs!! 

Proud Auntie Alert: 

I’m so incredibly proud of my niece, Tess McChesney Kunik for creating the amazing film, Reasons I Want To Recover. The film stars a collective of "artists spreading awareness about eating disorders and disordered eating patterns through dance, sound, poetry, paint, and bravery,”including my Tess.  SO PROUD  of my brave and talented Tess McChesney Kunik! Please click HERE and watch her outstanding film! 

I’m also looking forward to watching The Mindy Project on March 17th, because my other talented niece,  Cristin Milioti is guest starring! So stoked & proud! Read all about it, HERE.

What are you guys looking forward to in the next few weeks? 

Share if want, or don't. But make sure to focus on the good to get you through the mucky weather! 

Dear Health Insurance Companies: I Wish For A Lot - And I Demand Even More.

This post was based on a recent conversation I had with friend. We can wish all we want, but we also have "to do." We gotta make the listen. We must demand, we must "do," and we must become the change we want - In our lives and our lives with diabetes~
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Dear Health Insurance Companies: 
I wish I knew what my diabetes required tomorrow - I really, truly do, because it would make my life so much easier in so many ways. 
I wish I had a crystal ball that would accurately tell me exactly how much insulin my body will need, 30 days, 90 days and 365 days a year down to 1/5 unit - but I don’t know, because my diabetes requirements are never the same from one day to the next.
That doesn’t make me non-compliant - that makes me a person living with diabetes - And in my case, type 1 diabetes.

I wish I knew exactly how many times I MUST test my blood sugar everyday for the next 365 days. In my head I'm envisioning a magical 2015 calendar for me to that details and breaks down all my glucose numbers advance, including the whys and hows. 
How many low blood sugars; high blood sugars, sick days, exercise days, stress filled days and everything in between.
Now lets take that magical and mystical calendar a step further so that it can accurately predict in advance and breakdown my daily/weekly/room glucose tests for (and error messages,) including and the approximate date those days will occur, for ever single calendar year. 
That would be GREAT - Then I could give you those numbers well advance!
But magical calendars don't exist and that's now how diabetes works.

EVERY day is different. 

And I’d love to know in advance an approximate number of "error messages" that will flash on my meter/sensor screen in the next 12 months so we can hash out it out accordingly and before hand re: supplies and durable medical equipment coverage.
I wish with all my heart (and infusion site real estate,) that I could properly predict if infusion site will actually subcutaneously suck in all the insulin my body requires, before I stick the 1 inch steel needle - before I waste a precious infusion site on a dead-spot that I cannot reuse.

I wish I had an endless supply of money and time when it comes my diabetes supplies, wants verses needs. 
It's frightening and maddening all rolled into one that the people who decide what diabetes supplies will or won’t be covered, and have, for the most part - no understanding of what an infusion site does or doesn’t do, and that a 90 day supply is anything but, when it comes to doorknobs, dead spots, and margins for error. 

And that a person's one month's supply of insulin requirements  does indeed change, daily and monthly, because our diabetes requirements change every day. 
It's infuriating that there's no wiggle room at all when it comes to how much insulin insurance companies will actually pay for on a monthly basis - don't even get me started on covering only 50% of the cost of my monthly insulin because insulin is only available for purchases as a name brand instead of generic! 
Insulin's also the only medication, name brand or otherwise that keeps me alive!

I wish health insurance companies would take into consideration that every damn day my body and my diabetes requires different amounts of insulin  - just like those with fully functioning pancreases. 
I wish insurance company would take into consideration that at least 22 things on a daily basis contribute to my blood sugars - things like, but not limited to; stress, illness, exercise, caffeine, my period, and everything else in between. 
That for just one day, the folks at my insurance company could experience what a roller-coaster of blood sugar feels like and requires.Pricking their fingers, counting carbs and injecting incessantly in order to get handle on a ride that no one wants to go on. 
I wish they would realize that Murphy’s Law applies to people with diabetes, a.k.a., the magnet like attraction of tile floors to insulin vials - and usually a few days before we are able to renew are prescription without paying dearly.

I wish health insurance companies would not only understand & acknowledge the mental side of living with a chronic illness, as well as the physical and medical requirements - but would cover the mental and the physical without having to fight.

I wish that the people who implement changes re: my healthcare and yours, and who have the power to approve/deny our diabetes medications and technology, would not only understood and acknowledge that managing diabetes and every chronic illness is difficult; never ending and constant, but would actually approve those medicines and technologies that allow us to maintain our physical and mental health. 

I can wish all I want, but I'm down with wishing - I'm tired of wishing. I'm all about demanding and doing. So are all the Diabetes/Patient Advocates who pay your premiums.

WE won't stop advocating for our rights and our coverage and we won’t stop demanding- because our very health and wellbeing requires that we do. 
We will continue to use our collective powers - Our voices, posts/vlogs, our tenacity, the power of Social Media online and in real life to empower others and make changes. 

Being patients has taught us it's to never give up; to speak up, to listen and learn from one another and work together - because our current and future health depends on it. 

Sincerely, 
Kelly Kunik

PWD, Diabetes Advocate