Wednesday, December 23, 2015

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.

Friday, December 18, 2015

Colgate Total's #30DaysOfLOL - It's A Wrap!

As ColgateTotal® and The American Diabetes Association’s  #30daysofLOL comes to an end, I’ve had a lot of fun  - and I’ve also been continually reminded of certain constants re: living the D life, and learned a few important lessons in the process. 

The Constants 
Humor: Coping with diabetes is a lot easier when you can laugh - Humor is what keeps me sane when diabetes is on the edge of driving me bonkers.
Community: The DOC (Diabetes Online Community,) is who keeps me sane when diabetes is on the edge of driving me bonkers.
Type 3’s matter: People who love someone with diabetes (Type 3s,) lighten our load and make us smile.
Every Diabetes Voice Matters: Keep using yours! 

The Lessons
  1. Sugary snacks are not the best for our teeth - OK, I already knew that - but I tend to selectively block that fact out every now and then and for many reasons, namely chocolate and caramel 
  2. People with diabetes are at twice the risk for developing gum disease. 
These facts scare me because I worked in a Dentist’s office for a time and I saw things that brought the above facts to life, and I want my teeth and gums to stay healthy for two reasons
  1. Vanity, maintaining my healthy smile
    B. My overall health, knowing I am at a higher risk for serious gum problems because of diabetes. 

3. I brush my teeth a lot  - I even carry my own toothpaste - but I didn’t know that brushing for two minutes at a 45 degree angle, every time we brush our teeth is important

4. Also, I didn’t know that 2 minutes worth of brushing is about the length of a pop song (SEE VIDEO,) or that t3 Joey Fatone’s Dad has diabetes. 

Sidebar and FTR: Joey Fatone still has mad Robot, groovy dance moves. Again - SEE VIDEO.

So to all those who participated, posted, liked, tweeted, retweeted and shared in the #30DaysofLOL fun - THANKS from the bottom of my busted pancreas!

ColgateTotal® and The American Diabetes Association thanks you too!

ColgateTotal® has created the #30DaysofLOL Word Game graphic below so you can continue getting your silly on~

Thursday, December 17, 2015

When You See A Blue Candle Posted On Facebook - Consider The Family & Practice Empathy~

I know people get scared when they see blue candles - I do too. 
But please, lets remember to consider the family whose loved one the blue candle is being lit for - they are going through hell right now. 

Their hearts are broken and their lives will never be the same. Talking about a tragedy is one thing - talking is OK, but publicly judging and public speculation re: the tragedy is another. 
You're words matter, use them wisely and with compassion and empathy, in real life and on Social Media. #######
When "diabetes complications" are listed as the cause of death in a person's obituary, it is highly insensitive and inappropriate to leave questions like, "did she have a CGM, or did she wear a pump,"
on the obituary link, Facebook pages,groups, and the likes there of. 
Lets keep in mind those grieving parents might actually be members those pages/groups. 

At this point in time, it is no one's business. The family is trying to make funeral arrangements, say goodbye to a daughter and sister, figure out and process how they are going to live as a family of three instead of four. 

Her sister is now processing that she is an only child. 

The family needs privacy and empathy, not  pointed questions, they have enough of their own questions to fill volumes of books.

And in time, there's a very good chance the family will go to Facebook for comfort -and those questions and the tone many of those questions were written in, will not give them comfort.
I've had people say tell me: But I want to know so it won't happen to my child/loved one - and I get it. 

But honestly, it's not about you or me and what we need to know to calm our own fears.
It's about a  family who has lost someone they love dearly and what they are going through right now, including the shock of loosing  someone they love  - they need to go through the grieving process and they need our support. 

I've had people tell me: You don't understand, your child doesn't have diabetes - you're not a parent.
You're right, I'm not a parent or a parent of a child with diabetes, but I am a former child with diabetes - and I lost a sister to diabetes complications in 1991 - I saw how my parents suffered, I experienced my own suffering - and we as a family experienced scrutiny re: my sister's care. 
I know what that family (for the most part,) is going through and what they are going to go through in the 12 months, and I wouldn't wish that on anyone. 

Public speculation, scrutiny, and questions like the ones I mentioned (and especially like the ones I've chosen not to repeat,) place blame on the family and the person who passed away. 
That's not right, that's not kind, and that shows a lack of compassion and empathy.

To quote a wise woman, "The thing about wanting to know so that you can avoid it implies that there is something that could have been done. We all do our best to care for our kids, and I am sure she and her family did as well. Technology and diligence may provide some protection but they are not a guarantee... why we need a cure!"


When the family is ready, they may choose to share the how and the why...or not.
But until that time, lets give the family space,  and send them boatloads of our love, support, empathy, compassion, and prayers. 

Monday, December 14, 2015

Dear Lady At The Christmas Party

Today's blog post is actually posted over at IwishPeopleKnewThatDiabetes, and I hope you'll click HERE and give it a read -and if you feel like leaving a comment there - great!

What's the post about? It's about the diabetes police and being judged in a place that’s supposed to be filled with holiday cheer - and that’s effed up.

Thursday, December 10, 2015

Clearing My Head & Getting My Walk On

For a while now, I’ve been doing my best to get my walk on
Not everyday, but I’m trying. I don’t get my walk on to focus on my blood sugar, (I mean I do, for as much as I have  to re: my bgs/temp basal rate to actually go for a walk,) and I don’t focus on losing weight - though I’d be lying if I said it wasn’t a goal.  

I don't want to focus on what getting my walk on does for me physically, because then it feels like another diabetes box to check off on my 'diabetes to-do' list. 

I get my walk on to clear my mind and enjoy my surroundings. 
I get my walk notice the little things and the big - I smile at people I see along the way and now there’s few people I see who always wave hello. 
Sometimes I walk for 30 minutes and other times over an hour - music blasting in my headset and I may or may not and some dance moves to my walk . 
Getting my walk on Saturday meant going to the beach and capturing this coolness~
I  take pictures of interesting finds and and the end of the walk I feel really good. 

I get my walk on during lunch, and sometimes I work through lunch and head out a little early to walk before the sun goes down - and the colors of the sky blow me away. 
I’m working on getting my walk at 6am walks - and we shall see.

And not so surprisingl,y on the days I walk and well into the next day I take less insulin and have better bgs. 


So, how do you get your walk on? 

Monday, December 7, 2015

Take 2: You, Me, Colgate Total, The American Diabetes Association = #30DaysOfLOL Twitter Chat on 12/8, 8PM-9PM, EST

If you're on twitter or Facebook, you know that last Wednesday's Colgate Total &  American Diabetes Association's special #30daysofLOL twitter chat was postponed due to the tragedies in San Bernadino,CA and Savanna, Georgia that occurred on the same day.

The Colgate Total & American Diabetes Association's special  #30daysofLOL twitter chat has been rescheduled for tomorrow, Tuesday, December 8th from 8pm - 9PM EST. 


I think we all could use some laughter and friends to to laugh with - and I hope that you will participate tomorrow's the #30daysofLOL convo.  

I can't wait to hear what you have to say, laugh at all the crazy stuff related to diabetes with you, and pick up a few tricks of the diabetes/oral health trades in the process.
Follow and use the #30daysofLOL hashtag and your gracious hosts; @diabetesalish (a.k.a., me,) @Colgate Total, and the @amdiabetesassn and join in the conversation tomorrow at 8PM, EST. Also, by participating in the chat, not only will you learn and share, you'll have the chance to win a year's supply of Colgate Total® Toothpaste ;)  

Tomorrow, 12/8 from 8pm until 9PM EST., together we laugh at diabetes and
learn about good oral health!
#30daysofLOL

Sunday, December 6, 2015

Of Weekend Work-Outs, Beautiful Weather & Mostly 'Bitchin' Blood Sugars~

Because this weekend I worked out both days and outside - and it was incredible. 
The weather was amazing and yep I'll say it, it was exhilarating. 
I didn't do a hardcare, kick-my-ass-to-the-curb, workout - One 3 mile mile walk yesterday and a 3.3 mile today. 

Temperatures felt more like late October than December - until the sun started going down, then there was no doubt that it was December. 
And those workouts contributed to the best multi-day blood sugars in... well,.. I don't know, because I'm not quite sure, but like a while. WHATEVER.

And now yours truly is ready to go to bed because fresh air + working out = sleepy time. 

But because of DIABETES throwing a bitchswitch, and even with my insulin pump's temporary basal rate reduced by half for most of the afternoon and all of this evening, my blood sugar is now 80 with 1.10 units on board. 

But Im not going to stress - I'm going to do.  
I'm going to knock back the rest of my juice, then eat a cheese stick, wait for my numbers to go up, and hit the sack. 
And I'm going to be thankful because I don't feel like being in bitch mode.
I don't feel like getting mad or frustrated - I'm not in the mood. 
 Today was a good day and I'm thankful for the beautiful weekend; the workouts, the sights and the mostly bitchin blood sugars. 

Tuesday, December 1, 2015

12/2 @ 8PM: You, Me, Colgate Total & The American Diabetes Association = #30DaysofLOL Twitter Chat

I'm working on the Colgate Total® and American Diabetes Association’s  #30daysOfLOL campaign and really enjoying it - hope you are too!
#30daysofLOL twitter chat - BE THERE !
    I enjoy finding the funny in diabetes and the Colgate Total/American Diabetes  #30daysofLOL because: 
  1. IT KEEPS ME SANE (Ok, more sane) 
  2. Learning about diabetes and oral healthcare keeps me healthy
  3. Laughing, learning, and discussing diabetes with others who live with D is empowering and it makes me feel empowered 
  4. I'm incredibly stoked to announce that I’m part of the Colgate Total, American Diabetes Association's #30daysofLOL hour long twitter chat that occurs tomorrow, Wednesday December 2nd, from 8 to 9pm, ET. 
    From the bottom of my busted pancreas, I hope you'll follow me (@diabetesalish,@Colgate Total, @AmDiabetesassn, and the #30daysofLOL hashtag, join in the convo and dish about diabetes/oral health and all the stuff that has the potential to drive us bat crazy if we didn't laugh about it!

    Plus, I'm looking forward to what you have to say and all of us picking up a few tricks of the diabetes/oral health trades! 

    Also, by participating in the chat, not only will you learn and share, you'll have the chance to win a year's supply of Colgate Total® Toothpaste ;)  

    ****Wednesday night on the twitter from 8pm on, is going to be a fantastical night in all dimensions for people with diabetes!