Advocacy . . . . learning as I go

As is fitting for Diabetes Awareness Month, the DSMA blog carnival has us talking about advocacy.  What one thing will I do differently and how will I accomplish it?

I think the one thing I need to do when it comes to advocating is to be more . . . . . aggressive . . . . bold . . . . I’m not quite sure exactly how to put it into words.  But here is the thing . . . . I always feel like I should be doing more, and like I want to do more.  So I guess I need to be more proactive in finding ways to advocate.  I need to just go for it!

My advocacy table at our JDRF walk

When I signed on as the Advocacy Team Chair for my JDRF chapter, I was scared out of my mind.  I’d never done any government advocacy before and I wasn’t sure I’d be up for the challenge.  But I knew I wanted to try and I knew I would give it  my all!  And I have loved every minute.  I’ve pushed outside of my comfort zone to meet with government reps numerous times.  And to make calls to their offices about diabetes issues (I am so not a phone person).  And I’ve spoken about advocacy, on stage with a microphone, at our two JDRF walks.  I was a bundle of nerves for each of these tasks, but the rewards have been so great.  I think it’s important, and very good, to push ourselves to do more than we think we can.  (Hmmm, I sound so preachy, don’t I?  Yuck!)

Wow, tangent much?  But to sum it up, one thing I will do differently is to do more, even if some advocacy tasks are outside my comfort zone.  The way I will accomplish it is by being bolder and not listening to those scared voices that try to hold me back and by being more proactive in finding ways and opportunities to advocate.

What are your favorite advocacy opportunities?  Do you have any new advocacy goals for 2013?

This post is my November entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/november-dsma-blog-carnival-2/.

Wordless Wednesday - #NDAMphotoaday Week 4

#Dietdrink (it’s not easy to find Trop-A-Rocka near me, so I snap(ple??) it up when I can!)

#Carbs (my home-made cranberry sauce is my favorite Thanksgiving carb indulgence)

#Unicorn (I tend to hoard these awesome stickers from Sara)

#Exercise (I hate it, but I’m doing it)

#Eyes (I get ‘em checked every six months)

#Shoes (I'm a rebel & don’t wear “sensible shoes”. Especially on my wedding day!!)

#Stockpile (my post Halloween score!!)

Moving Forward . . . .

I’m excited to be participating in Joslin’s National Diabetes Month Blog Project, along with a great bunch of d-bloggers.  We have been given four topics to post about and we’ve been sharing our thoughts on each week’s topic on our blogs.  Aside from raising awareness about life with diabetes, we are also pitching in to try to raise some funds for Joslin’s High Hope’s Fund.  You’ll see a link at the end of this post to their fundraising page, if you’d like to donate.

This week’s topic is: Moving Forward: What tech/management tools/delivery systems have helped you live more normally? How could these things be better?

I guess I kind of jumped the gun, because I wrote a bit about d-technology and management in my Joslin Blog Project post from two weeks ago.  I love the tools we have today.  Carb counting and the bolus features on my insulin pump make eating much more flexible (AND FUN) than it used to be.  (Trust me, the exchange diet was NOT FUN!!)  My CGM helps keep me aware of high and lows that I just might not feel.  I can tell at a glance if I’m good for a workout or need to have a snack first.  I can tell at a glance if I’m good for some dessert or if I should delay it until my dinner carbs and bolus have run their course.  Fingersticks are unbelievably better than urine testing was.

But as for living “normally”?  Well, my normal is still vastly different from the normal of a person without diabetes.  I still stick myself with needles every three days.  I still draw blood multiple times a day.  Diabetes is always in my subconscious, and usually in my conscious most of the day as well.  Oh, and I also always lug around a ton of crap to cover any d-emergency that may arise.  So my normal with diabetes really isn’t that normal at all.

Until we find a cure, things that will make my life better are things that will make it easier.  Devices that communicate seamlessly with one another to stand in for my pancreas.  Devices that can be controlled by things I carry with me anyway.  Yes, I am saying again that I want my smartphone to be both my CGM receiver and also give me the options to do anything I can do from my pump screen.  Tall order, I know, but it would really be great.  I also am looking forward to seeing the Artificial Pancreas some day.  Because honestly, the thought of just sitting down and eating without doing major math equations and timing out boluses seems unimaginable to me.  The thought of avoiding most highs and lows because the Artificial Pancreas has my back seems crazy.

The thought of just living my life without always thinking about and doing the work necessary for diabetes management?  Yup, that is exactly how things could be better.

If you’d like to donate to the Joslin Diabetes Center High Hopes Fund, you can do so by clicking here.

Late, but still Blessed . . . .

Last week was the third annual Diabetes Blessings Week.  I always look forward to this event from Mike Durbin of My Diabetic Heart because I love the encouragement to focus on the good things we’ve experienced from having diabetes.

I planned to have my Blessings post up on Thursday for Thanksgiving.  But then the day filled up fast with cooking and eating and family and  . . . well, let’s be honest. . . . and quite a bit of prosecco.  Friday we left the house early for a day out with our friend.  And by lunchtime on Friday it became apparent I caught the cold my Dad had been sick with during the week.  So I spent Friday night and all of Saturday resting in bed.


And that, believe it or not, is my blessing.  For whatever reason, maybe diabetes and maybe not, my immune system sucks.  I seem to pick up every germ out there.  But because I have diabetes, when I start to feel something coming on I slow way down and take care of myself.  Diabetes is hard enough without tossing the flu or a cold into the mix.  Without diabetes I’d probably feel inclined to power through and push myself when I really need to be home in bed.  But diabetes has helped me appreciate the importance to taking care of myself when I need to.  Diabetes helps me remember that when I feel something coming on, it’s time to nip it in the bud.

Diabetes has helped me learn to listen to my body and not take my health for granted.  And that is a blessing.

Wordless Wednesday - #NDAMphotoaday Week 3

#Diafail (meter said 154, CGM said above 400 - I’ll be posting more on this soon!!)

#Blue (the emotion, not the color)

#Random (those random highs make me nuts!!)

#Bolusworthy (I made these cupcakes a month or so ago, so worth the bolus!!)

#Strips

#Friends (I love them all!!)

#Hate (I hate to be high, so I really hate those double up arrows)

Talking . . .

I’m excited to be participating in Joslin’s National Diabetes Month Blog Project, along with a great bunch of d-bloggers.  We have been given four topics to post about and we've been sharing our thoughts on each week’s topic on our blogs.  Aside from raising awareness about life with diabetes, we are also pitching in to try to raise some funds for Joslin’s High Hope’s Fund.  You’ll see a link at the end of this post to their fundraising page, if you’d like to donate.

This week’s topic is: Talking: Why/how did you get into blogging? What have been the best and worst parts of doing so?

Ah, talking.  Sometimes talking makes me nervous, and I get this babbling thing going where I barely take a breath.  But writing?  Writing is something I’ve always felt very comfortable with and something I’ve always loved.  As a kid I wrote long letters to my cousins.  As a teen I signed up for a pen-pal and we wrote epic, 30+ page letters back and forth (and we’re still friends on Facebook).  In college, between term papers and class notes, I wrote letters that kept me in touch with my friends back home.

So I guess it’s not so surprising that I got hooked on blogging pretty easily.  I started out with a knitting blog, and I loved connecting with others across the country who shared my love for our hobby.  But my knitting blog wasn’t nearly as rewarding as Bitter~Sweet has been.  Because this blog has connected me with others not only across the country, but around the world, who also have diabetes or care for someone who does.  Blogging has taken away the isolation of my invisible illness.  Blogging has made me a better informed patient and has helped me be in the best health of my life.  It has been so wonderful to connect with others who really understand what it’s like to fight the diabetes fight every day.  It’s incredible to answer a question for someone or support and encourage someone when they need it.  Through this blog, I’ve made so many treasured friends, many of whom I’ve been lucky enough to spend time with face to face as well as connecting on-line.

The worst part of blogging about diabetes?  Well, there isn’t much about it that I don’t like . . . . but I guess sometimes it can bring a bit of “diabetes overload”.  After all, there are a ton of d-tasks I do every day just to survive.  Now let’s add in blogging about diabetes, tweeting about diabetes, chatting about diabetes on Facebook, doing offline diabetes stuff like my JDRF volunteer work . . . . it can be a bit overwhelming at times.  But do you know what?  Even when it feels like diabetes has seeped into every second of my day, I wouldn’t trade in one minute of blogging, social media and volunteering.  Because it’s truly what I love to do.

If you’d like to donate to the Joslin Diabetes Center High Hopes Fund, you can do so by clicking here.

Wordless Wednesday - Two Days Late

You know it’s been a tough week when your Wordless Wednesday post gets published on Friday.  (And lets just ignore the fact that my Wordless Wednesday posts always seem to contain a lot of words!!)  But here were my #NDAMphotoaday pictures for the 8th - 14th.   

#Sparkle (the sparkle of my Lilly 25 Year Medal)

#Blood(y Mary) - easier on my blood sugar than martinis

#LowTreatment (this brings me up fast when I’m “scary” low - almost worth it!)

#Cupcake (someone thinks my cute cupcake blankie belongs to her)

#Love (I don’t  love being part-cyborg, but I love having tools to keep my healthy)

#Meter (sock monkey on the front, cupcake on the back)

#Today (it was World Diabetes Day)

Changes . . .

I’m excited to be participating in Joslin’s National Diabetes Month Blog Project, along with a great bunch of d-bloggers.  We have been given four topics to post about and we will share our thoughts on each week’s topic on our blogs.  Aside from raising awareness about life with diabetes, we are also pitching in to try to raise some funds for Joslin’s High Hope’s Fund.  You’ll see a link at the end of this post to their fundraising page, if you’d like to donate.

This week’s topic is: Changes: What were the biggest changes you went through after diagnosis, and what were (if any) small things you didn’t realize would change?

When I was diagnosed with Type 1 at age 11, it wasn’t only my life that changed.  My parent’s life changed, and I suppose my younger brother’s did too.  Diabetes affects not only the person diagnosed, but those who  love them as well.  But honestly, it’s been so long (32 years and 11 months) that I really don’t think about those changes anymore.   This is the life I have, and personally I do  much better if I don’t compare life before to life after.

However, there are some changes that I love to think about, because they give me hope and keep me going when things get tough.  They are the changes in how diabetes is managed today, as opposed to how it was managed when I was diagnosed.  Back then, I tested my sugar by putting a few drops of urine in a test tube and adding a Clinitest tablet that fizzed and burned.  I then compared the concoction to a color chart and this gave me a fairly broad idea what my sugar was . . . . . or rather, had been several hours before the urine test.  At meal time instead of counting carbs, I counted exchanges on my very strict eating plan.  I could only eat certain things at certain times of the day - and the fact that I was hungry or not hungry didn’t count for anything.  There were no insulin pumps or even insulin pens as part of my regime - instead my mother drew up two types of insulin from vials into one syringe for my daily injection.

When I think back to the “old days” with diabetes, I’m so thankful for the changes I’ve experienced.  I’m lucky to have my blood glucose meter and my insulin pump and my continuous glucose monitor.  I’m grateful to be able to count carbs and bolus for what I want to eat whenever I want to eat it (mostly . . .  although at times high or low blood sugars still can dictate a food choice now and then).  I feel very fortunate to live in a time when diabetes advancements are helping to keep me healthy and free of complications that were unavoidable for those in generations before me.  Living with diabetes still isn’t easy, but new treatments and technologies have made it a little easier than it was when I was 11.

These are the changes that fill me with joy.

If you’d like to donate to the Joslin Diabetes Center High Hopes Fund, you can do so by clicking here.

Savings and a TwitterChat from CVS

CVS has some cool stuff going on during Diabetes Awareness Month, and they were kind enough to provide me with information along with some samples from their diabetes line.  Here’s the scoop . . .

Well, diabetes is expensive, right?  And saving money on d-supplies is a good thing.  So, you can sign up for the CVS ExtraCare Advantage for Diabetes® program, which has been expanded to offer even more savings.  Savings highlights, straight from my email from CVS, include the following:

• Participants will earn Double ExtraBucks Rewards (that’s 4% back) on over 100+ products related to diabetes
• A $5 coupon is available to participants who sign-up for ECAD now through 12/31/2012
• CVS/pharmacy is a viable resource for those living with the disease as well as their caregivers
• Pharmacists are available for questions and concerns related to the disease
• ECAD offers more than $130 in savings from Diabetes Health Magazine
• CVS/pharmacy is also hosting free glucose screenings during National Diabetes Month in November.
• Customers can now receive a discounted $15 co-pay on a 30-day supply of CVS/pharmacy TRUEtest Strips, as well as a mail-in rebate for free meters.

I downloaded a copy of the Diabetes Health Magazine, and it contains some good coupons for many of the newest meters on the market.  It also has coupons for glucose tabs and other supplies, and some recipes.  It’s definitely worth checking out.  (Scroll down and click the Download pdf button in the What’s New tab).

Another cool thing going on is that @CVS_Extra will be hosting a twitter chat tomorrow, November 15th, at 3pm EST featuring Elizabeth Seaquist, VP of Medicine & Science from the ADA and CVS Pharmacist Flora Harp.  They’ll be answering all kinds of questions about the ExtraCare Advantage for Diabetes program and about aspects of diabetes in general.  The main hashtag for the chat is #DiabetesMonth.  Hope to see you (or tweet you) there!

Wordless Wednesday - #NDAMphotoaday Week 1

#Struggle (aftermath of a site change)

#Prescription (my co-pay total so far this year)

#Fingers (Here is what 10 fingersticks a day looks like - all on one finger)

#Oops (Tried something new for breakfast. It didn’t work!!)

#Bullseye (This is an old picture, but three devices reading so closely screams BULLSEYE to me!)

#Feet (I knit these, and how cool is this??)

#Gear (aka: why I don’t have one of those tiny cute purses . . . . )

The Beginning . . . .

I’m excited to be participating in Joslin’s National Diabetes Month Blog Project, along with a great bunch of d-bloggers.  We have been given four topics to post about and we will share our thoughts on each week’s topic on our blogs.  Aside from raising awareness about life with diabetes, we are also pitching in to try to raise some funds for Joslin.  You’ll see a link at the end of this post to their fundraising page, if you’d like to donate.

This week’s topic is: The Beginning: Share a story from when you (or the person you blog for/about) were first diagnosed.

I was diagnosed almost 33 years ago, in December of 1979.  That’s a long time ago, and although I was old enough to remember (11 years old at the time) a lot of it is fuzzy and forgotten.  I remember having to go to the bathroom all the time.  I remember not wanting to eat because I felt nauseated.  I remember my parents making the decision to take me to the ER.  I do know that I was very very close to lapsing into a diabetic coma and that I spent several days in Intensive Care.

But a couple of years ago, my mother filled me in on something I didn’t remember, and on something I never knew.  I didn’t remember that on the morning of my diagnosis, I said I was sick and wanted to stay home from school.  Apparently, my mom thought I would be fine and sent me in to school.  A few hours later, the school nurse called my mom to come pick me up because I was getting worse.  I don’t remember any of that.

But here’s the thing that really sticks with me.  My mom told me that, to this day, she feels very guilty for sending me to school that day.  More than 30 years have passed, and she still feels guilty about it.  And to me, the fact that she has lived with those feeling of guilt all of these years is the worst and saddest thing about my diabetes diagnosis.

If you’d like to donate to the Joslin Diabetes Center High Hopes Fund, you can do so by clicking here.

Farewell, Old Friend . . .

In 1994 I bought my first brand new car, a black Honda Civic.  It carried me all over New England.  It shuttled me back and forth to New Jersey nearly a hundred times over the three years that Pete was living there and we were doing the Long-Distance-Relationship thing.  It’s not bright and shiny anymore, but it has always started up faithfully.


When we bought our new Civic two years ago, we decided to trade in Pete’s car and be a two Civic family.  But when he started his new job in April and began commuting by car instead of train, we bought him a new car.  We transferred the insurance and registration from my old Civic to his new CRV.  And we made the decision to donate my Civic to JDRF.  This afternoon a tow truck will be here to take it away.

Farewell, old friend.  You were a great car and I have many fond and sentimental memories of you.  As hard as it is for me, I know it’s time to say good-bye.  And it warms my heart to know that by donating you, you may someday help bring a cure for diabetes.

Bring Out Your Blue!!!

Happy November!!!  Since this month is Diabetes Awareness Month, my blog is going BLUE for diabetes support and awareness!!



It’s been a busy week here, but I’m grateful to have made it through Hurricane Sandy safe and sound.  Those winds were fierce but my 91 year old house stood up well!  And now, I’m ready to celebrate and raise some diabetes awareness all month long.  Don’t forget to wear your blue tomorrow for Blue Friday.

Do you have any plans to up your advocacy for November?