#dBlogWeek: Message Monday~

Day one of #DBlogWeek and it’s all about the message. And to quote Karen, the creator of #dblogweek, directly: " Message Monday: What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.” 

Living with diabetes isn’t about one thing - it’s about many things. 
The same can be said as to why I blog about diabetes and the messages that are important to me. I can’t pick one message or platform because there are so damn many - all important, each taking their place in front of the line on a rotating scheduled decided by life.
Diabetes and the media: I started blogging in 2007 because I was ticked at Halle Barre and her publicist’s inaccurate diabetes statements that were made in the media. 
I was sick of the diabetes inaccuracies and I needed both the public and the media to get diabetes right. I always considered myself a diabetes mythbuster and I started blog as a way to bust myths and stereotypes wide open and encouraged others to do the same. 
I want people to use the proper words when it comes to diabetes because words matter and words stick - accurate or not.
Humor: I’ve always used humor as a coping mechanism when it came to dealing with life - and life with diabetes, because I felt (and still do,) that if you can laugh about your diabetes, you can own your diabetes. 
I want others to laugh and become empowered because I know what it was like to lose someone I loved to diabetes because they felt like diabetes had all the power. 
Holy Crap, the DOC is AMAZING: About 2 months after I started blogging I realized that there was this amazing community called the DOC, and while I always knew I wasn’t the only one living with diabetes  - I never realized until I found my tribe that I’d been wearing an anchor of diabetes guilt around my neck for a long time - it was heavy and I was tired. 
And I never realized that diabetes burnout was a thing and that there was a loneliness to living with diabetes - until I  found others in the DOC and I no longer felt alone. 
It was because of the DOC that learned to flip my diabetes bitch switch for good, not evil. 

Becoming a Diabetes Advocate because it’s ain’t about me: Finding DOC has turned me into a passionate Diabetes Advocate because it made me realize that it wasn’t about me - it's about us - every single person in the world living with diabetes. 

We are in this together, no matter the diabetes type or which part of the world we live. 
#DiabetesAccessMatters for everyone - as does stripping safely and sparearose.org, and DSMA and that the Blue Circle is global and all encompassing. 
Through blogging I have found friends for life, who've taught and continue to teach me, every single day... and who have been there for me when I lost the one I loved the most. 

#IwishPeopleKnewThatDiabetes: Because of blogging, I’ve learned to not only cultivate my diabetes voice, I've become inspired by other diabetes voices  - and hopefully helping I'm paying it forward and helping others to discover and use their own d voices.

Finally, the big ass message is: WE MATTER. Every single person living with diabetes matters  - every single voice matters - and when added to the chorus of voices - mountains move and we are Khaleesi type of powerful. 
And yep, you know after last night’s Game of Thrones, I had to get a Daenerys Targaryan, aka Khaleesi reference in!
FLAME ON! 

My POV: The 2015 DiabetesMine Innovation Summit

The holidays made for a crazy schedule. Here are my thoughts on at the 2015 DiabetesMine Innovation Summit.

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I’ve followed the DiabetesMine Innovation Summit online since it's inception, and this year (thanks to receiving a scholarship from DiabetesMine,) I was able to fly cross country and attend the 2015 DiabetesMine Innovation Summit, on November, 20th, 2015.  

The summit brought together all the key game changers in the diabetes world in all dimensions. Patient Advocates who live with D 24X7, ‘designers of current and future devices, clinicians, R&D, Pharma Marketing, regulatory, groovy tech gurus,and more!

The agenda was jam packed and much of the focus centered on the major challenges of living with diabetes (see amy’s slides,) and usability factors being KEY. 

I LOVED that D patient challenges and usability in design took center stage!

Topics addressed harnessing the creativity of patients; behavioral aspects of living with a D 24X7, patient life hacks, design aspects of D products, industry embracing the patient experience, getting the FDA onboard, and D tech, just to name a few. 

So much was discussed in what seemed like a very short amount of time and my head was spinning and still is, but in a great way!

And as the day flew by, my mind went back to the original Roche Diabetes Social Media Summit in 2009 - and how industry was hesitant to engage with patients and all things Social Media.

Now, 6 short years later, things have changed dramatically and for the better. 

Patients and industry are working together and our diabetes voices are being heard! 

Some of the Speakers many talking points that have stuck in my head long after the conference ended, include: 

 Chief Technology Officer of the U.S. Department of Health and Human Services, Susannah Fox’s key note speech focused life hacks and usability, and the patient as collaborator and expert.
 When Susannah stated “the expert to any condition is the person who has the condition,” and talked about patients creating life hacks out of necessity because what they wanted and needed didn’t exist, everyone in the room living with a chronic illness could relate. When she talked about different patient communities working together to become the change, I kept thinking: YES, she gets it!  

Speaking of life hacks and patient voices being key - the Patient Voices Life Hack winners submissions (of which I was one,) where damn creative!   

SamePageHealth’s, Paul Ciechanowski discussion on the mental aspects of diabetes and treatment to help patients successfully change behaviors and thought patterns, struck a chord. When Paul talked about the emotional mind trumping the rational mind, aka,
"I know what I'm supposed to do, but I don't do it,” every person in the room living with diabetes felt understood.   
Open Notes: Eileen Hughes presentation on Open Notes, a program that allows patients across the country to have access to their clinicians notes on them, enabling them (us,) to become active co-partners with their HCP through an online portal.  
Leading patients to become more active participants in their disease, overall healthcare, and treatments. Open Notes is a GAME CHANGER! 
Sidebar: Last year, my cardiologist’s notes on yours truly were transcribed wrong, and my file mistakenly said I had a medical condition that I didn't have.  
If I hadn’t asked for a physical copy of my notes to be mailed to me, (and followed up that request with a phone call,) the error never would have been discovered and my medical records would still be wrong.
Once I notified my medical team of the error, it took a week to correct  because the Doctor, Nurse Practitioner  and transcriber all had to be consulted. 
Open Notes would have made both the detection and the correction of the error so much easier and less time consuming.  

Toronto’s Dr. Joseph Cafazzo, of the Centre for Global eHealth Innovation presentation "How the Industry is Embracing User Experience," had me nodding my head with virtually everything he said, including how insulin pump interface is annoying and how pump design re: buttons and control must be designed to be more user friendly. 

Another example he mentioned was redesigned of the Target pill bottle by Deborah Adler, whose designed focused on highlighting drug name and instructions, thus making it more easy for the patient to read/access medications at a glance, instead of the focus being on the pharmacy’s name.   

That example brought home one of his key points re: the importance of empathy in design - and I agree. After all, empathy is key in our lives and it’s key in the design of technologies that allow us to live our lives with diabetes. 

Jessica Floeh’s presentation successfully articulated something I’ve been bitching about for years - having a chronic illness shouldn’t mean that we should be forced to wear ugly diabetes accessories - My pancreas is busted, not my sense of style.  
Of course, Jessica expressed herself more eloquently and professionally, pointing out that insulin pumps are only designed by middle aged men who are OK with wearing black clips on their pockets or belts and right next to their iPhones. 
She also stated that device designers must include women with diabetes, who actually wear insulin pumps, test their glucose, wear CGMS, etc. 
Women have diabetes. Women wear insulin pumps, so why aren’t we included? 
Back Story: Jessica is quite the  Diabetes Designer herself. Creator of the HankyPancreas (which was also a past DiabetesMine Innovation Summit submission,)and former designer at Intel - wants designs for medical devices to be more inclusive - representing all the humans wearing/using those devices - not just the ones designing them. Hallelujah! 

VitalCrowd: Very Cool platform designed by t1 Anna McCollister-Slipp,  that will engage patients and researchers to comment and make suggestions on existing research projects/designs and come up with new ones - I can’t wait for it to go live! 

The Diabetes Mine Usibility Innovation Award winners and runners-up included names that everyone living with diabetes are familiar with because their products and services make our lives easier. Checkout the winners, HERE. 

YYES, the Diabetesmine Innovation Summit was eye opening, informative, and incredibly validating as both a person with diabetes and a Diabetes Advocate and I am so incredibly thankful that I had the opportunity to attend. 

My thanks go out to Amy and the DiabetesMine team for hosting the summit and for the scholarship, and every person who attended and presented at the Summit. 
WELL DONE! 

Fore a more comprehensive look at the conference with links to the speakers and slides, read Amy’s article, HERE.   For pictures of the event, Click HERE.

Burned Out & Sparkless As Of Late - #DOCBurnout2015

Diabetes Social Media Burnout blog Day  - Join in and reignite your Diabetes Social Media spark!

Burnout - It’s a very real thing - in life and life with diabetes - Burnout is also real when it comes to Social Media and the Diabetes Online Community. 

We live the diabetes life 24X7, with no time off for vacations or good behavior, and we spend an incredible amount of time online in a community that has literally reinforced that: 
1. We are not alone
2. Our voices (diabetes and otherwise,) matter
3. Connecting with others who "get it," saves our sanity 93% of the time but has the ability to makes us bonkers at least 7% of the time.

Sidebar: My  math skills aren't the greatest and I've pulled those numbers out of my head  and FTR, they have no scientific value.  
As always, YDOBMV (your degree of bonkers may vary,) online and off, d related bonkers and otherwise. ;) 

Diabetes Social Media Burnout has been the reason my blog has been quiet the past couple of weeks - Things were getting crazy with life, but more than that, I needed a diabetes Social Media  timeout - both mentally and physically. 

I needed to take a beat and regroup - more on that tomorrow. 

Speaking of tomorrow, Tuesday September 1 is the designated day that the Diabetes On-line Community will officially celebrate Diabetes Social Media Burnout Blog Day, a.k.a., #DOCburnout2015 on the twitter. 

A day where we can talk about and tackle our diabetes Social Media burnout, discuss ways we can regroup, re-fuel, and refocus our energies. 

A day where those of us who blog; facebook, tweet, periscope, vine, instagram, etc, can share examples and tips on how we handle D Social Media burnout and discuss things that spark the diabetes social media burnout. Included, but not limited to:  online disagreements/ bullying from having a different DOC, POV, diabetes information overload, 
Diabetes burnout combined with Diabetes Social Media burnout and general feelings of malaise. 

To learn learn more about tomorrow, visit: http://www.diabetesdaily.com/blog/2015/08/inviting-you-to-blog-about-diabetes-social-media-burnout/

I’ll be participating and I’m looking forward to reigniting my Diabetes Social Media spark, via learning from my community (YOU,) that has given me so much. 
Also, the very act of writing this blog post is making me feel a bit sparkly, already!

One last thing, to find a list of all Diabetes Social Media Burnout Day blog post links, visit www.diabetesdaily.com tomorrow and look for the article, "Diabetes Social Media Burnout Day," read & find the participating blog links in the comment section~

Diabetes Blog Week Day 4: Changes - Where The Hell Do I Start?

Today is day four of Diabetes Blog Week - And today's topic is all about changes in all dimensions that you'd like to see re: diabetes.
Here are my thoughts (OK, it's a rant,) on the topic of "changes," and I hope you can relate~
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Changes when it comes to diabetes - where the hell do I start? 

For starters, I’d like the Diabetes Blame Games to cease. 

I’d like people (John and Jane Q Public & media folks, THIS MEANS YOU,) to get the diabetes facts instead of perpetuating the diabetes myths - regardless of the type.

Hey media - people with diabetes don’t attack, zombies do. 
Don't report about someone going into insulin shock while driving and and needing insulin - Insulin is the last thing they need and your going to end up killing someone. Ever hear of Sunny VonBulow - GOOGLE IT.

And stop with the whole “he or she suffered from a a diabetes/diabetic attack.” 

And while I’m at it, stop using phrases  “suffers with diabetes, or diabetes sufferer.” 

I don’t suffer with diabetes. I’m annoyed and frustrated by diabetes at times, but it’s part of me and if I thought of myself as continually suffering with diabetes - I’d never be able to get out bed in the morning. 

And enough with the diabetes story lines on TV and the movies that are completely wrong! Seriously, WTF. 

And while I’m on a roll - I don’t want to hear that something is “diabetic friendly." 

I don’t consider something jacked up with carbs that causes me extreme gastrointestinal distress, friendly at all. 

Here’s something to marinate on: The rift between the types will stop because we are all different branches on the same diabetes family tree and the whole blame game T1 Vs T2 and ignoring those with  LADA1.5 has got to go the way of the Dodo bird. 

 I’d be thrilled if people stopped telling me that if I just gave up all things white, I’d be off the demon insulin in 30 days - for the record you can’t cure or reverse diabetes in 30 days - if it were that easy none of us would be blogging about diabetes and Pharma would lose a valuable cash cow. 

Speaking of Pharma, I’d love it my insulin expenses, pump supplies, and test strips (with insurance btw,) didn’t equal a God damned Mercedes car payment every month.

Speaking of insurance, they don’t make generic insulin, I need that shit to live, so stop charging an arm and a leg for  one freaking bottle of my elixir of life!

And reality check, 10X3 does not = thirty days worth of insulin pump supplies. 

Also, I can’t effectively maintain good blood sugars if you only allow me to test 3 to 6 times a day. 

And speaking of the cure - If I one more Dr./Organization says we’re 5 to 10 years from the cure, I will go so damn Jersey on them and they won’t know what hit them. 

My list of changes could go on, but I don’t have all day and neither do you. 

So yeah, I want changes when it comes to diabetes - and between you and me - it’s up to us, as people living with diabetes to make those changes happen.

Together, we need to yield our collective super powers and be the change - And I know we can do it! 

#IwishPeopleKnewThatDiabetes Survey & Facebook Page

For all those who participated in 

#IwishPeopleKnewThatDiabetes Day & continue to use the hashtag - THANK YOU!

Now I need your help. 

 Please take 5 minutes to fill out the #IwishPeopleKnewThatDiabetes Survey by clicking on the link below.  

https://www.surveymonkey.com/s/SBDRTB8
The survey contains 10 questions (the majority are multiple choice,) and should only take 5 minutes to fill out.
I need your thoughts on the IWPKTD movement and initiative so we can move forward collectively. 
There's also an "official" #IwishPeopleKnewThatDiabetes Facebook page and I encourage you to leave your thoughts on your experiences with IWPKTD and give it a "like"!

Stay tuned for #IwishPeopleKnewThatDiabetes website info and announcements!!