Friday, April 17, 2015

#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~ 
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#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 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 busted pancreas. 

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! 


Also, please checkout http://mydiabetessecret.com . 

Monday, April 13, 2015

Sometimes My Diabetes Game Face Gets All Sorts Of Saucy - And I'm Fine With That~

I always try and educate people about diabetes and advocate for people with diabetes whenever I have the chance - ALWAYS. 
But I'm only human -and every once in a while my Game Face gets saucy - and I'm fine with that. 
######
Spring has finally sprung and the weekend weather was in the mid 50’s, the sun was shinning, the air was fresh, and I was feeling all sorts of groovy. 
I texted a friend and we decided to meet up mid morning for a walk -and that's exactly what we did. 
After 45 minutes of low impact cardio, we stopped in front of a local coffee shop and ran into some people my friend knew. 
After introductions, we stood there talking outside the shop for a good 10 minutes - and when we saw an outdoor table emptying, we grabbed it. 
As the conversations continued, I nonchalantly removed the little black bag I always sling over my shoulder when I walk or ride my bike (it’s really small & just big enough to stash my phone; keys, glucose tabs, meters/strips,) and tested on what I thought was the sly. My meter flashed 97 and for a split second I felt like like a test strip ad. 
My head was letting me know that I REALLY needed an iced coffee with cream and sugar, and just as I was about to excuse myself and grab one, I heard someone say: Oh, you have diabetes? My sister-in-law has diabetes and she has it so bad that she has to wear one of those things on her waist to give her insulin.
Sidebar: My friend looked at me with her “ WTF” face combined with her "I'm so sorry face." I took a breath, put on my game face and flashed my friend and Sister Dip my dazzling smile and responded.

Me: Oh, you mean an insulin pump, like this - And I grabbed the Asante Snap insulin pump I’ve been trialing from my waist and held it in my hand. 

Sister Dip: Ohhhhhhh...., you wear one, too.
Then she turned red and said: Well you look really good.

FTR, I'd just walked 45 minutes against the wind, I looked like a wind blown hot mess.  

Me: Thanks, today I feel great. Look, wearing an insulin pump doesn’t mean you have diabetes "SO BAD.” It means that you’ve found a piece of diabetes technology that works for you and helps you manage your diabetes. Some people prefer to do that with injections and some people prefer to do it with a robotic pancreas clipped to their hip.

Sister Dip: No, she has it bad. She has to test her blood sugar like 7 times a day - sometimes more.  And she goes low or high sometimes for no reason at all. 
Yep, I took another deep breath before I responded.

Me: Yeah, me too - that’s life with diabetes. Lots of testing blood sugars, counting carbs, figuring things out and trying to roll with it when diabetes decides to flip out because it can. 

Sister Dip: But she has to wear that thing like 24 hours a day!!

Me: Yep, I know she does. That’s how it works. 
And I didn’t even go into explaining the whys of short acting insulin or the hows of long acting insulin or how you can do everything right , theoretically - and diabetes still can screw with you.  

Sister Dip: What do you do when you shower or swim? What do you do when you have sex!!!! 
Sidebar: The first part of the question she said in a low voice, but the second half of the question was dialed up to 11 and everyone sitting outside turned and looked at me. 
Also, did I mention that  I'd literally just met her? 
I have absolutely no problem discussing diabetes and sex, or sex for that matter - It's not what you say, it's how you say it. And Sister Dip was REALLY getting on my last nerve. 
Me: I take my pump off when I shower or swim and then I put it back on afterwards. 
As far as sex - that depends on my mood and sometimes it depends on the circumstances. But for the most part, sometimes I leave it on, sometimes I take it off.....What do you do when you have sex?? 

Sister Dip: I don’t wear a pump. 

Me: Oh, you should try it - It really spices things up!!! ;) 
And then she looked at me like I had three heads and I laughed a big belly laugh and grabbed my card from my bag.


Me: Give your sister -in-law my info, I'd love to connect with her. 
OK, I REALLY need an iced coffee, I'll be right back - you guys need anything?  

And then I went and grabbed my friend & I our iced coffees and when I came back, the discussion had changed to Game of Thrones. 
And I was glad. 
And I really felt bad for her sister-in-law. 

Wednesday, April 8, 2015

Cold Spring, Spicy Salad ~

Spring is here, at least in theory and I'm just back from 4 days in Florida (more on that in another post,) where it was sunny and warm and it felt more like summer. 
I returned home to temps in the high forties, north easterly whipping winds and lots of rain. 
I miss my family and I miss the warm weather, fresh fish, fruits and veggies. 
So last night I made one of my favorite summer time snacks, a spicy cucumber salad to keep me in the warm weather mindset. 
This salad is INCREDIBLY EASY, DELICIOUS & ADDICTING. 
At least for me - and much like the beloved pickles (a.k.a., free food) of my youth, this salad requires no bolus and allows me to achieve/maintain blood sugar nirvana sans the bolus - but of course, your diabetes may vary~
 Here's the recipe! 
Spicy Cucumber Salad~ 
Slice a cucumber in half and scoop out the seeds in each half with teaspoon
Slice the scooped cucumber halves and place in salad bowl. 
In a mixing bowl, mix Sriracha Rooster Sauce ( LOVE IT) with sesame oil & mirin - other wise known as rice wine vinegar. 
Add fresh squeezed lime juice (a wedge or two will do, depending on the size of the salad,); sea salt, cracked pepper and ginger powder to taste. 
Whisk all the ingredients together and pour over cucumbers. 
Sometimes I sprinkle sesame seeds on top, but most times I don't. 
Eat & enjoy! 
**As far as measurements - that's up to you and your taste buds - there's no right or wrong amount of spicy deliciousness in this recipe.
*** This salad will be addicting - YOU"VE BEEN WARNED. 

Tuesday, March 31, 2015

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. 

Friday, March 27, 2015

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~







Wednesday, March 25, 2015

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* 

Tuesday, March 24, 2015

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. 
######
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!