Eighth Annual #DBlogWeek Wrap Up...

I'm a bit late with this year's Diabetes Blog Week wrap up, but I wanted to make sure we capped things off.  And better late than never, right?

This year we had 114 bloggers officially signed up.  That makes this year the smallest #DBlogWeek, but we certainly made up for it with extra enthusiasm.  There are over 350 wonderful blog posts on last week's link lists.  Did you forget to add yours?  Or did you fall behind but still want to tackle the prompts?  Don’t worry, the lists will remain open until the first weekend in June so you can add your post.  After that, the lists will officially close to new entries, but they will remain on-line for future reference.

This wrap up wouldn't be complete without a huge THANK YOU to all of you!  I’m so grateful to everyone who blogged, read posts, tweeted, Facebooked, left comments and lurked with us once again for DBlogWeek.  You are what make #DBlogWeek happen and I’m more thankful than you know.  Honestly, it didn't bother me one bit that our participation was smaller this year, because we are still mighty!  And I'm definitely not ruling out the possibility of a Ninth Diabetes Blog Week next year!!

Diabetes and The Unexpected - #DBlogWeek Day 1

Welcome to day one of Diabetes Blog Week, Year Eight!!  If you’d like to participate but haven’t signed up yet, please do so here (scroll down a bit to find the form).  The more the merrier and it’s definitely not too late.

Today’s topic is Diabetes and The Unexpected.  Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?  (Thank you, Heather, for inspiring this topic!)

You know the old saying “Don’t sweat the small stuff”?  Well, I have yet to follow that advice.  I sweat the small stuff.  I also sweat the big stuff.  I pretty much sweat all the stuff.  It’s annoying.

The upside to this is that I’m generally over prepared for just about any situation.  When it comes to diabetes, more often than not I have everything I need.  My purse has candy, glucagon, everything needed for a pump site change, extra tape, batteries and syringes.  A reminder on my phone assures I don’t forget a site change.  When I travel, I bring at least three times the diabetes stuff I need.  That’s not to say I’m perfect.  There have been a few times when I’ve slipped up a bit, but usually I’m more than prepared for the unexpected.

And the most unexpected thing about being way way way prepared is that I’ve been able to help out others.  I’d say the majority of my travel is for diabetes conferences.  Having a ton of supplies means I can help out others who’ve forgotten something.  Ran out of strips at Friends for Life?  I had an extra vial to give.  Needed tape for your sensor at UnCon?  Look no further than me.  Forgot to pack your infusion set inserter or ripped out your site and didn’t have a spare?  I had your back.  And my favorite unexpected was a pump that died at the DiabetesMine Summit.  I had packed my old pump and was able to loan it out until a replacement pump was sent.  (Although given the option, I'd definitely wish my friend's pump hadn't malfunctioned......)



I try my best to be prepared for any diabetes unexpected situation that pops up.  But I never expected how good it would make me feel to know I can also help out a friend in need from time to time.


You can find more Diabetes and The Unexpected posts listed here.

What is Diabetes Blog Week? Click here for an explanation and to sign up.  You can also check out the Participant’s List here.  And don't forget to check out the DBlogWeek Facebook page here.

Grains of Sand……

Sometimes I think of the Diabetes Online Community (or DOC) as a huge beach, and each of us are the tiny grains of sand that make up our beach.  Sometimes we quietly lay there, sometimes we drift in and out with the tides, and sometimes we come together and do something huge.  When that happens, I see us as a big beautiful sandcastle.

Last week I once again attended the HealthEVoices conference.  (I attended in 2015 as well, but didn’t apply last year because it conflicted with another event).  I love this conference because it opens my eyes to all of the other health communities out there.  Amazing people doing amazing things.  And although their conditions may be different from mine, a lot of what we are addressing is the same.  Stigma, advocacy, privacy, burn out - these are just some of the topics we discussed that we all relate to.  When we share what has worked or hasn’t worked for us, and why, we can learn from each other.  We make our communities stronger.  We all become more effective.

So my take away from #HealthEVoices17?  You are but a grain of sand on a large beach.  But don’t forget that your beach is not the only beach.  Take a look at the other gorgeous beaches and all of the beautiful grains of sand they hold.  You can learn so much just by visiting their shores.  There are a lot of the other amazing sandcastles out there!

Disclosure: Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.

Choosing UnConference

About a year ago I had a decision to make.  I could attend JDRF Government Day or I could attend The Diabetes UnConference.  They overlapped in 2016 so I could not attend both, as I had in past years.  It wasn’t an easy choice to make.

Government Day is a great event, focused on advocating to our elected officials in their offices on Capitol Hill.  We educate them about diabetes and the need for continued government funding.  We educate them on issues they will be voting on, explaining why these issues are so important to people with diabetes.  It is a great event and I’ve felt extremely lucky to be involved with it for several years.

The Diabetes UnConference is also a great event.  It is a peer to peer conference where the attendees set the agenda.  More importantly, the attendees are the experts.  We learn from each other.  We share openly and honestly with others who are going through many of the same things we are.

So, as you probably already know, I ended up picking the UnConference.  Both events were important and both were places where I felt I could make a difference.  But in the end, I thought about the huge backing and large reach that JDRF has.  I knew there were others who could attend Government Day in my slot.  They would do a great job getting our message across.  And they deserved their chance to attend.

On the other hand, my perspectives and experiences are my own.  I am the only one who can share them at the UnConference.  And if doing so helped just one person feel understood and less alone, then being there was necessary.  And so, I chose UnConference, and never regretted the decision for a minute.


This year I will be returning to the Diabetes UnConference as a facilitator.  I’m nervous, of course, but I’m so excited for the chance to hopefully help even more.  I’m grateful for the opportunity to help make the conference the best it can be for everyone attending.

Time is running out for you to choose UnConference.  The deadline to register is Tuesday, January 24th.  The deadline to book your hotel room at the special conference rate is just a week away on Tuesday, January 10th!!  So now is the perfect time to choose UnConference.  I'm sure you will find it the right choice.

Between Big and Napping…

The other day I was wasting time on Facebook and I came across this . . .

flipflap - 12/28/2015 1:31:47 AM

And I chuckled and thought about how nice it would be to take a nap and then I moved on.

I later came across this post from Riva Greenberg about advocacy burnout.  And it resonates with me.  As always, Riva has a remarkable way of always getting to the heart of what I’m feeling.  November is Diabetes Awareness Month, but this year I don’t feel that I’m “going big” like I have during Novembers past.  I’m tired and maybe a bit jaded from the years I tried so hard to promote and educate and raise awareness and felt like I was screaming into a void.  That the only ones listening were us, the DOC, the ones who already get it.  I’ve felt bad about feeling this way, but once again Riva has reminded me that this is part of being human and it’s okay.

That isn’t to say I haven’t been working on stuff.  I’m part of a couple new projects - one that has launched and is shaping up nicely and one that is still in the very beginning stages.  I’m really excited about both and will be telling you more very soon.  I’m also busy off-line with support groups and events and in-person stuff.  I’m not exactly “napping”  yet.

I’m here.  Somewhere between Big and Napping.  A little bit glad that Diabetes Awareness Month is almost over.  And for now, right where I think I need to be…..

Why I SHOULDN’T do the Big Blue Test…

The Big Blue Test starts today, and I’m certain you can find numerous posts around the DOC telling you why you should participate.  But it’s Friday and I’m tired and cranky and probably need some more coffee (or a cocktail but it’s too early for that, right?).  So I decided to let my cynical narcissistic exercise-hating side take over and come up with some reasons why I shouldn’t do Big Blue Test.  Please read each lazy-ass excuse in the most whiney voice you can conjure up.

1. I can’t find any information on what Big Blue Test even is.  Wrong.  There is a whole post right here that does a great job of explaining Big Blue Test. It even has a video.
2. It takes too much time.  Nope.  It takes as little as 14 minutes.  That’s less time than a mid-day Starbucks run.
3. Nobody else is doing it.  Untrue.  More than 100,000 people have done Big Blue Test since it launched in 2010.
4. If so many other people are doing it, nobody needs me to participate.  Incorrect.  The goal this year is to reach 150,000 entries.  That is a lot, and every single participant matters if the goal will be reached.
5. There is no benefit to me.  False.  On the average, people doing Big Blue Test see their blood sugar drop by around 20%.
6. Okay, but there is no benefit to anyone else.  Erroneous, and also not very narcissistic, by the way.  The truth is, each Big Blue Test logged results in $3 donated to diabetes charities.  $1 each goes to DiabetesSisters, We Are Diabetes and Riverside Community Diabetes Collaborative.
7. It is way too hard to log the results.  Inaccurate. You simply answer the quick form found to the right of this page.  Or, you can download the Big Blue Test app to your mobile device for even easier logging.
8. I don’t have diabetes.  Okay, so obviously I do.  Even the cynical narcissistic exercise-hating side of me.  But if you are reading this and don’t have diabetes?  You aren’t off the hook.  Look at question 2.  If you answer Yes, fields pop up to record your blood sugars.  And if you answer No, you won’t see those fields but can still record your Big Blue Test participation.

Well, son of an expletive, it looks like my cynical narcissistic exercise-hating side has run out of reasons not to do the Big Blue Test.  There is no reason I can’t manage an entry a day from now through November 14th.  And the same goes for you, right??

When Worlds Collide - #AADE16

My world is the patient world, the Person With Diabetes world.  So when I decided to attend the AADE Annual Meeting this year, I was a little bit nervous.  Sure, I've been to plenty of conferences. But they have all been geared towards patients. This conference was different. This was my first diabetes conference that was geared towards health care professionals. I’d be in a whole different world than the one I’m used to.  I worried that maybe I wouldn’t fit in, and maybe I would feel like I was intruding.  I couldn’t have been more wrong.

The sessions I attended reminded me that there is a whole group of people out there that want to help us live the best lives we can.  They want to help us get the tools we need to thrive - and there was recognition that our tools are both physical and emotional.  It’s hard to pick a  favorite session because they were all so good.  But I think I’ll go with “Culinary Medicine Helps Overcome Hurdles to Healthy Eating" presented by Leah Sarris, Program Director for the Goldring Center for Culinary Medicine at Tulane University.  I loved hearing about programs in which patients come in and learn how to make healthy foods that are less expensive and quicker to prepare than zipping through the drive-thru.  It’s easy to see that learning these skills sets a patient up for much more success than sending them home with a vague order to “eat more lean protein and vegetables”.

I also spent a little time at the DiabetesSisters booth and I was thrilled to see how excited the CDEs I spoke to were about the peer support we provide.  I’m always careful to explain that our PODS meetings don’t include any medical  advice, but everyone I spoke with understood that already.  I didn’t need to explain myself or the things I write about or volunteer for.  I was just welcomed and accepted as part of this conference, and it felt great.

I’ve come away considering the patient world vs the HCP world.  Hours put in to managing diabetes.  Knowledge learned and shared.  A desire to make tomorrow better than today.  Which world am I referring to?  That of the patient or that of the educator?

The answer is both. When what I thought of as two worlds collided, I saw it isn’t about the PWD world and the CDE world.  It’s about the world we share together.  And I’m happy to have so many talented educators out there, dedicated to making our journey through this life with diabetes as successful as possible.  Thank you, #AADE16, for making a first timer feel like she fit right in.


(Okay, okay, it wasn’t all sessions and education.  Just as with patient-centric conferences, there was time for some silly fun too . . . . . )

Diabetes Around the World . . . .

I’ve been leading DiabetesSisters Virtual PODS for almost two years now.  I love getting together each month to discuss diabetes with women all over the United States.  I’ve learned so much from each and every “sister”.  It’s been especially interesting to hear some of the different challenges we may face based on where in our country we live.  Weather can cause challenges.  Urban areas may have different resources than rural areas.  Different types of foods may or may not be available.  It really gives me something to think about.

And when I co-hosted our first Global PODS in February, with Elizabeth from T1International, all of these things got bumped up to the next level.  There are challenges faced by women with diabetes in other countries that I have never fathomed.  And still, we also have so much in common, which is a comforting and uniting circumstance.  So I am very excited to co-host our second Global PODS tomorrow.  I can’t wait to reconnect with some of the women from around the world that I (virtually) met last time and get to know some new attendees.  We’ll be discussing access, comparing and contrasting pressing access issues in each of our countries and brainstorming for possible solutions.

If you are women living with any type of diabetes and would like to join us, please email me or Elizabeth so we can send you the meeting link.  We’ll be holding the Global PODS tomorrow, Friday July 29th, at 3pm GMT.  (Click here to see what time that is in your corner of the world . . . . )

Feeding the Mind - #cwdffl16 Part 2 . . .

In my last post I talked about how Friends for Life is very much a social occasion for me.  Spending time with my d-family is important for my mental health and happiness.  But Friends for Life is also about the sessions and learning new things and learning more ways to live a happy and healthy life with my chronic illness.  In addition to feeding my soul, FFL feeds my mind.

One might think that after living with diabetes for over 36 years,, there isn’t much new to learn.  But that isn’t true.  New treatments and technologies are being developed continually and I want to know what my future might hold.  So the opening keynote, delivered by Ed Damiano who updated us on the iLet, set the tone for the buffet my mind was embarking on.  And since I’ll no longer be attending JDRF Government Day and hearing annual research updates, I was really excited to hear what Aaron Kowalski had to say about things such as encapsulation, smart insulin and closed loop systems - all in various stages of development and / or clinical trials.

Feeding the mind and becoming an educated patient isn’t just about learning what treatment options may be coming in the future.  It’s also about learning to take care of ourselves.  During MasterLab, Dr. Heyman gave a fantastic, and (for me) a much needed, session entitled "Don’t Forget About You: Taking Care of Yourself While Advocating for Others".   It was a great reminder that we need to make sure we are not overextending ourselves,and that we shouldn't feel guilty about taking time for self-care.  Or maybe that is just what I took away from it.  In any case, it’s something I need to be reminded of.

Then there are the (as I call them) "touchy-feely" sessions.  These are sessions that I can't really tell you much about, because we discuss things in a safe space where nothing said will leave the room.  We open up about issues such as dealing with complications and diabetes burn-out and topics that tip more on the emotional end of the scale than the medical one.  I need that safe place and the bonding that occurs as we bare our souls, and that ah-ha moment when I realize that being bogged down by my chronic illness doesn't make me a failure - it kind of makes me normal.

The truth is,  more often than not I look forward to Friends for Life because it’ feeds my soul.  But I shouldn’t undervalue the fact that is also feeds my mind.  It’s like a gourmet dinner followed by a decadent dessert, and I appreciate every minute.

Feeding the Soul - #cwdffl16 Part 1 . . .

In 2011, Pete and I attended our first CWD Friends for Life.  And we happily went back for the following three years.  But last year, we decided Pete deserved a vacation that DIDN’T revolve around diabetes.  #blamePete  Okay, okay, that isn’t entirely true.  We decided together that we both needed a year when our vacation dollars were spent on something without a diabetes focus.  Sure, we can’t really take a vacation from diabetes, but going somewhere non-diabetes related is important sometimes.  And so we took a Canada / New England cruise, which was a fantastic adventure.  But we missed FFL.  A lot.

So this year, it was time to go back.  And we’re both thankful that we did.  Friends for Life is more than just a conference for us.  It’s also a family reunion and a vacation and a second home and a bunch of other indescribable things with a ton of happy feelings.  It’s a week when I get to hang with some of my most favorite people from the internet.  In short, it feeds my soul.  And here is why . . .

I got to spend time with Cara and Becky.  Cara and I call ourselves twins because we were born on the same date and are so much alike. So time with her is always wonderful. And finally meeting Becky in real life, who came all the way from the UK, was a huge treat this year.

I've been Twitter pals and blog pals with Rick and Trip for quite some time. Finally getting to hang with them in person was priceless!

I reunited with my fellow New Englanders in the expo hall.  Funny thing is, I don’t think I’ve ever actually been in New England when I’ve seen any of them.

Dinner and silliness are always important!!  I love this crazy bunch.

I had no idea Wil would be attending, so seeing him was a very nice surprise.  He wrote a great post about his experience as a first-timer this year.

Diabetes can feel so isolating at times.  Working primarily from home in the on-line world also feels very isolating.  So spending the week in a place where I felt decidedly not-isolated was exactly what my soul needed.  And exactly what Friend for Life gave me.

Eight . . .

Eight years ago today I started Bitter-Sweet.  Yes, there are a few posts written in the beginning of 2008, but those were originally published over at TuDiabetes back when members had the capability of creating a blog on that site.  But June 21, 2008 was the day I created this blog site and my Bitter-Sweet journey began.

Now I will admit, given the chance I would opt out of diabetes in a minute.  But since that isn’t about to happen any time soon, I’m so thankful I have this blog to help me connect with other fabulous PWDs and share all my ups and downs.  With that in mind, here are eight wonderful things that probably wouldn’t have happened if not for my blog . . . .

• Becoming an Educated (and thus, Healthier) Patient.
• Becoming an Advocate and going to The Hill.
• Doing Art for a Book Cover.
• Coordinating Diabetes Blog Week seven times over!!
• Finding Local Support.  Actually, my local support group has expanded quite a bit in 8 years but still contains two very treasured friends from that very first dinner.  (Even though one friend is now Not-Quite-As-Local-but-Local-Enough.  ie: an easy under 2 hour car ride.)
• Becoming a PODS Leader.
• Learning about and Attending Patient Conferences!!
• Meeting so many Awesome PWDs who are Family to Me.  And yes, that collage is more than 4 years out of date, and would be so  much bigger now!

Thank you to everyone who had read or commented or tweeted or befriended me in the past eight years.  My world is a much better place because of you.

The Betes - The Patient Voice . . .

Two weekends ago I attended The Betes Organization’s event, "The Patient Voice".  I went on behalf of (and with assistance by) DiabetesSisters, and I was excited to see other members of DiabetesSisters and of the DOC.


But, to be honest, I wasn’t quite sure I’d “get” the event itself.  Don’t get me wrong, I loved and supported the idea of the event, which was to bridge the gap between patients and healthcare providers.  I watched Marina’s interview on TuDiabetes and was blown away by her passion and enthusiasm.  But the thing is, although I do have intermittent sparks of creativity, overall I don’t consider myself a very creative person.  So I was concerned I might not connect with the puppetry.  I was afraid the whole thing would kind of go over my  head. 

I could not have been more wrong.


The first performance piece involved a heavy box and The Betes (hand)puppet.  From the minute Marina took the stage, I was drawn right in.  I laughed.  I nodded.  I choked back tears.  I sang along with everyone in the room.  That sounds corny, right?  But somehow, it wasn’t.  We all sang together about the weight of carrying diabetes (a la The Beatles) and it was amazing.  And this is coming from someone who DOES NOT sing.


The second half was part of a new piece being created entitled “The Elephant in the Room”.  It deals with complications.  Emotionally, I didn’t react quite as deeply to this piece, probably because I haven’t really dealt with any complications (yet).  But it still resonated with me quite a bit.  Complications are a thing many of us don’t even want to thing about, much less openly discuss, so to see work being done the change that and the open the doors?  It was wonderful.

During the discussions that followed, I came to understand that these pieces seemed to touch different people in different ways.  Patients, healthcare providers, caregivers - what we saw meant different things to each of us.  But in the end, I believe we all were impacted by what we saw on stage and I think each of us left feeling a little bit closer to one another.

And in the end, that’s really what it’s all about, isn’t it?

Looking Ahead . . . .

April will be here at the end of the week, and then before we know it May will arrive.  Which means the seventh annual Diabetes Blog Week is just around the corner.

Seven!  Wow, I never imagined, way back during that first Diabetes Blog Week in 2010, that #DBlogWeek would have such staying power.  Which makes me wonder, does it need to be updated?  What would make it run more smoothly?  What suggestions do you have for #DBlogWeek?  How can I make it better for everyone who participates or lurks?

And so, I’ve created a little survey to collect your opinions, ideas and suggestions.  You can find it here.  I’ve tried to make it short but inclusive, with space at the end to tell me anything else on your mind.  I can't promise I'll be able to make every suggestion happen, but I do promise to try my best.  Please take a minute to fill the survey out, so together we can make Diabetes Blog Week is the best it can be.  Thank you!!

Spinny Thoughts . . .

I’ve been attempting to write about this year’s Diabetes Unconference for over a week.  Every day I open a blank blog page and start typing.  I ramble and reflect and edit and write some more . . .  and in the end, I delete the whole thing and decided to try again tomorrow.  Sometimes, unfortunately, a well-crafted cohesive post just won’t come.  Instead I just have a bunch of spinny thoughts rolling around in my head.  And so, bullet points will just have to do . . .

• This year’s Unconference felt different.  Not better and not worse, just different.  It wasn’t The First Year, so things felt more familiar this time around.  I knew how to get around the hotel.  And I had a better idea what to expect.

• Sessions with other PWDs, where the things we say go no farther than the space we are in, is important and much needed.  Even when the topics feel heavy and dark.  In fact, that is probably when it is most important.
• And although things can get heavy and dark, things can get just as silly and goofy and light.  Thank goodness for that!!

• Red eye flights?  Not so much my thing.  And conferences on the West Coast, in general, will take me far longer to recover from than I anticipate.  (Daylight Savings doesn’t help matters either.)
• Companies who sponsor conferences like this are awesome.  I’m thankful that they see the value in peer-to-peer support.

• Even if you’ve had diabetes since 1979, there are still new things to learn.

Disclosure:  I received travel assistance by way of a scholarship from DiabetesSisters, which helped me be able to attend the Diabetes Unconference in Las Vegas this year.

Day of Diabetes . . .

Have you heard of #dayofdiabetes?  It’s a day when the Diabetes Online Community documents our day of diabetes together by tweeting using that hashtag.  I have to admit, I usually forget to participate but this time I marked it in my calendar so I’d remember.  It worked!!

So tired but time to get today started. Blood sugar check is always 1st. Now 1 unit insulin for COFFEE #dayofdiabetes pic.twitter.com/XTvWm2yxHq

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

PS: Cat has opted to stay in bed. Lucky furball. #dayofdiabetes pic.twitter.com/nBxq5LNwz2

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

My huge coffee mug is a special gift made for me by a DBlog friend. I'll treasure it always RIP Hilary #dayofdiabetes pic.twitter.com/BTWIdJvcfX

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

It's cool enough that I should think about starting to go running again. Or maybe do it instead of think about it #sweatbetes #dayofdiabetes

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

Just because I can figure out my insulin dose w/o entering the carb count into pump, doesn't mean I should #workinprogress #dayofdiabetes

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

Yogurt =11carbs, granola=10carbs. 2.1 units. Breakfast math! #dayofdiabetes pic.twitter.com/bPMH0bLp80

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

Roasting & will become chicken tortilla soup. Solves problem of conference call at dinner time. (cont) #dayofdiabetes pic.twitter.com/ccghuW97zQ

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

I can eat early and Pete can eat whenever he gets home. Healthy homemade soup FTW!! #dayofdiabetes

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

Usually my healthy yogurt & granola brkfst spikes me over my high alarm. Today I topped out at 131. Weird but I'll take it! #dayofdiabetes

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

Lunch. BG 73. Carbs 22g. Insulin 1.6u. Plus more if I have grapes for dessert. #dayofdiabetes pic.twitter.com/Ys9lZoZ8uH

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

BG now 165. I knew the spike was coming sooner or later - today had been way too good. Damn that broken cookie I sampled #dayofdiabetes

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

Site change. #dayofdiabetes pic.twitter.com/9uVBMJrRqc

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

P always works late but had training today that got out early. So we can eat before my call-except #bgnow206. Damn! #dayofdiabetes

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

107 =homemade biscotti for dessert. No precise carb count like packaged food but hopefully healthier. #dayofdiabetes pic.twitter.com/QcBPbwVuoR

— Karen Graffeo, PWD (@KarenBittrSweet) September 23, 2015

So yeah, I tweeted a lot yesterday. (I've even left a few out because this post is already way too long. But perhaps my most important tweet yesterday was . . .

Having so much fun with #dayofdiabetes Helps a lot when we can all do this D thing together.

— Karen Graffeo, PWD (@KarenBittrSweet) September 22, 2015

On A Break . . .

In my eyes, Diabetes Social Media (and Social Media in general) is similar to a romantic relationship.  At the start, when it’s shiny and new, I’m completely enamored.  It makes me smile, it’s always on my mind, and when other life things need attention I can’t wait to finish them up so I can get back to my new love.  I’m happily infatuated and everything seems so perfect . . . .

But then the newness starts to wear off, and maybe things start looking a little less perfect.  Flaws start to pop up and reality sets in.  The very things that once seemed so great can start to become a bit annoying.  Conflicts pop up and the shiny begins to dull.  I feel the need for a break . . .


And that is exactly what happened this summer.  I began to grow a bit tired of Diabetes Social Media, finding flaws that maybe aren’t there and finding myself not quite as smitten as I used to be.  And I unofficially took a break.

So Diabetes Social Media Burnout Blog Day could not have come at a better time!  Thank you, Diabetes Daily, for coming up with this and really getting me to ponder my Diabetes Social Media relationship.  I’ve been thinking a lot about the little white print in the image to the right.  “Do you take breaks?  Have you been the target of an attack?  Felt bullied?  Exhausted?  Unappreciated?  How do you heal, endure, recharge, or reconnect to find your own happy balance within this powerful and tremendous community?  Share your tips on your blog, and in the comments section on DiabetesDaily.com’s burnout blog on September 1, 2015.  #DOCburnout2015”

My summer DSocMed break has been really nice.  I’ve had some time to think about what bothers me and what I love and how to balance all of that.  But the break has also been lonely.  I’ve kept up with some DOC friends but it hasn’t been the same as when I’m blogging and tweeting and reading and commenting.  I feel very out of the loop and I feel like I’ve been a bad friend and supporter.  So I am, hopefully, back from my little DOC break and I’d like to think I’m  a little wiser.  I’ve figured out the following:

• Personal stories and support is the most important part for me.  This is what first drew me into the DOC.  The connections, the me-too, the knowing I’m not alone and that we all struggle together.  When I’m too overwhelmed to read the hundreds of posts in my feed, the personal stories of bloggers who need support is where I should spend my time.
• Not every advocacy issues will speak to my heart.  And I need to understand that is okay.  Over the years, advocacy has gone from nearly non-existent in the DOC to a hot topic.  That is a great thing.  But I also find it exhausting at times.  “You need to do this.”  “You should care about that.”  “Why isn’t the DOC doing such and such?”  I feel a mix of guilt, resentment and, ironically, an urge toward inaction.  (I suppose I don’t like to feel bossed around.)  So I’ve decided that the great thing about the DOC being a vast pool of members with many varied issues is that I can put my energy into the ones that speak to my heart and that I’m good at.  I love my volunteer efforts with JDRF Advocacy.  I love providing support as the moderator of DiabetesSisters Virtual PODS.  Spare A Rose continues to be a must in my book.  When issues and initiatives speak to me, I will work hard to support them.  And when they don’t, that’s okay.
• It’s all about that one person I reach.  I find myself bristling at terms such as “DOC superstars”.  Does anyone in the DOC feel like this term applies to them?  Does anyone believe they lead the DOC?  In my mind, that’s not what our community is about.  I see us as all equal.  Living our lives with diabetes, doing the best we can, and reaching out to help and to be helped.  It’s not the number of comments and RTs that matters.  It’s the one comment or tweet from someone who says “thank you for this, it helped me”.  I’ll never feel unappreciated if just one person has been reached.
• Haters gonna hate.  (Do people even use that saying anymore?  Or does it just make me sound old?)  I have never felt bullied or been the target of an attack.  But I am quite sensitive and criticism that isn’t constructive hurts me deeply.  And the truth is, this year was the first Diabetes Blog Week that didn’t find me crying over something critical I stumbled upon.  But I realize I need to learn to let these things roll off me.  I know I can’t please everyone, even though I try really really really hard to do so during DBlog Week.  It’s terrible that I let the criticisms deeper into my heart than the compliments.  That’s totally on me, and it’s going to be something I work on from now on.  I’ll pay attention to constructive criticism, because that is very helpful.  The rest, I will learn to let go.

In the end, the break has done my DSocMed relationship some good.  I see that I am still in love, even if things are a little less shiny and perfect.  And a lot of the time, it isn’t you, it’s me.  But this is definitely a love that is built to last.

Sixth Annual Diabetes Blog Week

Can you believe it’s time for Diabetes Blog Week number SIX!  I remember that first year when I wasn’t even sure anyone would be interested in participating.  I was so thrilled that so many bloggers were game, and then wanted to do it again.  During the second year  DBlog Week grew, and it continued to grow over the third year and fourth year and fifth year.  And now here we are at six!  I'm so grateful for all of the enthusiasm and support Diabetes Blog Week has received year after year from the D.O.C.  I’m thrilled to do this each year and thankful for all the help I’ve received to make Diabetes Blog Week happen again and again.  So, are you ready?  Here we go!


 

What inspired Diabetes Blog Week?  For those of you who haven’t participated before, Diabetes Blog Week was originally inspired by a fiber-blogger event called Knitting and Crochet Blog Week.  When I participated that first year on my knitting blog I loved the way it united the community, and I knew I wanted to try to do the same for the DOC.

How does Diabetes Blog Week work?  The main idea for Diabetes Blog Week  is that bloggers sign up to post about a set topic each day for a week.  This way, readers can jump around the DBlog Community and get a big variety of different perspectives on a single topic.  The hope is that new DOC connections are made, and that our voices are raised to spread a little more diabetes awareness.

When is Diabetes Blog Week?  The sixth annual Diabetes Blog Week  will take place next week, from May 11th through May 17th.  

Where can I find the Diabetes Blog Week topics?  You can find the topics for next week on the Topics and Posts page.  They’ve been posted in advance, just in case you want to start drafting your posts this week.  (Remember not to publish your post until that specific day though!)   Use the topics as a starting point for your post each day and see where it takes you.  Write as much or as little as you like.  There are no right or wrong answers - just read over the topic and start blogging!  I've also included two wild card topics to choose from.  If one day’s topic doesn’t inspire you, feel free to post about one of the wild card topics instead!  

Who can participate in Diabetes Blog Week?  DBlog Week is open to anyone who blogs about diabetes - be it Type 1, Type 2, LADA, gestational, etc, and it’s also for parents, spouses and caregivers to someone else with diabetes.  If you blog about diabetes in any capacity, please join us!  The more perspectives that are shared the more connections we can make and understanding we can foster.  If you don’t have a blog but have thought about starting one, now is the perfect time.  There are free blogging sites (such as Blogger or Wordpress) that you can use to get started.  

Can blogs done by groups, organizations and companies join?  I like to make Diabetes Blog Week as inclusive as possible, so yes, group blogs and professional blogs are welcome to join.  However, the posts must be written by a blogger with a diabetes connection.  Also product plugs / advertising will not be allowed.  Posts that do no adhere to this policy will be removed from the master link lists.  (More about those lists below.)  

What if I can’t write posts for all seven days?  The idea for Diabetes Blog Week is that everyone who signs up to participate will post on all seven days.  Although that is the goal, I absolutely understand that life sometimes gets in the way, so if you end up falling short of seven posts that’s okay.  Diabetes can be stressful enough, so let’s keep DBlog Week fun and stress free!  

How do I sign up?  Once again, I’ve created a form to submit your information.  Fill it out and you will be signed up and added to the Participant List within 24 hours.  There is a space on the form for you to let me know if you have any questions, and you can also email me at any time at DBlogWeek@bittersweetdiabetes.com.

Fill out my online form.

Will there be a master list of posts for each day?  There sure will!  I’ve included daily Link Lists on the Diabetes Blog Week topics page.  Once you’ve published your post each day, be sure to add it to the that day’s list by entering your blog name and the url of that day's post.  This way we’ll have all posts linked in one central location, which makes it easier for people to hop around and read all of the posts.  Please do not “pre-post” your links - links may only be added on the day that we’re blogging about that topic and your post must be live on your blog when you link it.  (Early posts will be deleted from the list.)  

How about a button or banner for my blog?  I’m so grateful to Mike Lawson (@MrMikeLawson) for donating his talent and time to the cause again this year and providing fantastic DBlogWeek graphics.  If you’d like to display the button or banner on your blog you’ll find the HTML Codes below - just to make things a little bit easier.  Highlight the code in the box, then copy and paste it into the HTML section of your blog’s sidebar or post or where ever you want to display the graphic.

Grab the Button <a href="http://www.bittersweetdiabetes.com/2015/05/diabetes-blog-week.html"><img border="0" src="https://farm9.staticflickr.com/8718/16961638558_93ba336879_o.jpg" /></a>   Grab the Banner <a href="http://www.bittersweetdiabetes.com/2015/05/diabetes-blog-week.html"><img border="0" src="https://farm9.staticflickr.com/8772/16529245533_9739d501a5_o.jpg" /></a>
What if I want to tweet or Facebook about Diabetes Blog Week?  That would be awesome, you can use the hashtag #DBlogWeek.  

What else do I  need to know?  Great question.  I’ve tried to cover everything, but I’m sure I missed something.  So please leave any questions in the comments section below or email them to me at  DBlogWeek@bittersweetdiabetes.com.  I'll be sure to answer you as soon as I can.

Thank you all again for the overwhelming support during the last five Diabetes Blog Weeks, and I’m thrilled to be doing it a sixth time!

#IWishPeopleKnewThatDiabetes . . . .

Last week while I was sick I missed out on #IWishPeopleKnewThatDiabetes Day, an initiative organized by Kelly.  So in “better late than never” style I wanted to jump in now.


My perspective on this is due in part to my participation in the Health E Voices conference a couple of weekends ago.  The conference brought together people from a variety of different health communities, including rheumatoid arthritis, Inflammatory Bowel Disease, lupus, HIV, mental health,  different types of cancer and more.  How much do you know about any of these conditions?  Are you sure that what you know is actually correct?  I realized that weekend how much I don’t know about other health conditions - even ones that have affected my own family members.  For example, my grandmother had rheumatoid arthritis but I know very little about it other than it made it very hard for her to grip things with her hands and that knitting helped her.

I sat with these people, who are my peers but who live with conditions I know very little about.  And as it turns out, many knew little about diabetes.  So we talked.  We connected.  We respectfully, and somewhat apologetically, admitted to not knowing about each other’s conditions.  And it was okay.  And we shared.  And we learned a lot from each other.  And we realized that although we lived with different health concerns, we had so much in common.  It was pretty magical.

Photo provided by Janssen conference photographer.

 So what do #IWishPeopleKnewThatDiabetes?  I wish people knew that diabetes is not something I expect you to know everything about.  And that much of what you think you know may not be correct.  And that is absolutely okay, because unless you or someone very close to you lives with diabetes there is no reason for you to know the ins and outs.  And that you are more than welcome to ask me, in a respectful and honest manner.  Don’t be embarrassed for not knowing.  Just be open to learning and understand that I (mostly) know what I’m talking about because I’ve lived with diabetes for more than 35 years.  And I’m willing to share my perspective.

Disclosure:  Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.

The Expert? It's You . . . . .

Last Friday I flew to Vegas for The Diabetes UnConference.  Despite my usual travel anxiety, the journey went smoothly and I was lucky enough to spend both flights sitting with Stacey.  I was also lucky enough to have been randomly sent through TSA Pre-Check at both airports.  (Yay!!  And I spend about 30 minutes playing slots in Vegas and ended up $30 ahead!)  With the travel out of the way it was time to get on with the conference.


I feel very fortunate to have attended many diabetes conferences in the past.  I've been to pharma conferences where my travel was covered, and I've been to open conferences where anyone can attend if they can budget for it or obtain a scholarship.  Both kinds of conferences are comprised mostly of sessions.  And most of these sessions are led by experts - people with a ton of credentials and a long string of letters following their name.  That's good, because I often learn a lot and think about things I've never though of before.  Or think about things in a way I never had before.  These sessions are very valuable to me.

But the UnConference?  The UnConference was different in that all the sessions and discussion were led by us, the patients / attendees.  The conference facilitators were patients / attendees.  While other conferences I've been to usually have at least one similar session, where we can gather in a circle and really talk in a safe environment, I've never been to a conference where every single session was like this.  And it was wonderful.  I shared some of my deepest fears and said some of the hardest things I've ever had to admit out-loud.  I cried tears that were both happy and sad.  I laughed a lot and nodded in understanding.  I found out that all of the weird things I feel maybe aren't so weird after all.  Maybe I'm not a freak for feeling the way I feel.  Maybe it's diabetes that is the freak and others with diabetes share my feelings too.

The truth of the matter is that every session of The Diabetes UnConference was filled with a room of experts.  Every person living with diabetes is an expert.  Even when you don't feel it, you are an expert.  I'm willing to bet that diabetes has an impact on you, and nobody understands that personal impact better than you.  You are the expert.  I'm not an expert in the medical side of diabetes.  I may not even be an expert in parts of my life with diabetes.  But nobody knows better than I do what diabetes means to me, what diabetes does to my body and my emotions and where diabetes seeps into the cracks of my life.

I am my diabetes expert.  You are your diabetes expert.  And it took The Diabetes UnConference to show me how important that is and how much we need to come together and help each other.

Revisiting "Freak Outs" . . . .

***Today the DOC is participating in another #dblogcheck day, when we stop lurking on all the blogs we read and actually reach out and leave a comment.  Even if it's just to say "#dblogcheck" or "Hi, I'm here and I'm reading your blog!!".  It's always a lot of fun for me, but since (as mentioned yesterday) I don't have my laptop on-line things are all very slow and clunky.  So instead of writing a whole new post, I thought I'd look back at a silly little post from 2013 in hopes of giving you a little laugh as you make the #dblogcheck rounds today!***


Yesterday on Facebook Kerri shared a cute blog post she had come across - 46 Reasons My Three Year Old Might be Freaking Out.  It’s really funny, and you should probably go read it or you won’t really get the rest of my post.

So anyway, as often is the case, my demented brain worked out a way to bring this around to diabetes.  And I give you . . . . . .

46 D-Reasons I Might be Freaking Out like a Three Year Old

No AAA batteries.

Huge plates of French fries.

My husband drank the last of the juice.

My insurance company . . . . anything about them at all.

Mexican food.

I’m really really thirsty.

Low reservoir.

My toes are cold.

Gusher.

“Can you eat that?”

Endo appointment tomorrow.

“My Grandmother had diabetes and went blind!”

Ketones.

Chinese food.

“My father’s uncle had diabetes and they had to cut off his foot!”

26 mg/dL.

348 mg/dL.

Beep Boop BEEP.

I took my Lantus this morning . . . . . didn’t I????

Dessert buffet.

Bent cannula.

“My sister’s friend’s cousin had diabetes, but he lost weigh and it went away. Why don’t you do that?”

Dropped my bottle of insulin on a marble floor.

Dropped SOMEONE ELSE’S bottle of insulin on a marble floor.

Low alarm at the gym.

High alarm at the Italian restaurant . . . . before we even got seated.

Shopping at Target.

Non-delivery error.

Button error.

Motor error.

Husband thinks the reason I’m mad at him must be because I’m low.

Two up arrows.

Two down arrows.

Pricked, but can’t squeeze out any damn blood.

Pricked one spot, but bled from three.

Seven rage boluses finally kick in . . . . . all at once.

Co-pays.

TSA.

Error 5.

Blood spot on my new white shirt.

“Type 1 . . . . . is that the BAD kind?”

Halle Berry.

The diet Coke the waitress brought doesn’t taste like diet.

“220?  What did you eat??”

Snake oil cures.

It’s Wednesday evening and TWITTER IS DOWN!!!  #dsma