Box of Needles.....

When I was in high school, I didn’t want my friends to know I had diabetes.  I did everything I could to hide it, pretending I was just like the other kids.  But as I went off to college, I felt I had a fresh start.  I didn’t know anyone who was going to the same college I'd be attending  So I felt that telling classmates I had diabetes wouldn’t be awkward, since I hadn’t been hiding it from them for years like with my high school friends.

The fresh start worked and I no longer hid diabetes, but I also didn’t talk about it much.  I was still the only person I knew who had diabetes.  And it still made me feel different, and also ashamed because I knew I wasn’t doing very well with my diabetes management.  So even though I wasn’t hiding it, I wasn’t exactly loud and proud either.

One evening I was at a friend’s apartment for a party.  The bathrooms in our on-campus apartments had storage closets with sliding doors for stuff to be stowed.  Someone had left the sliding door open, and I couldn’t help but notice an oh-so-familiar-to-me box of syringes.  I wondered who it could belong to and I couldn’t get it out of my head.  So I asked my friend about it.  As it turns out, his roommate, who I didn’t know all that well, had diabetes.  “Yeah, he always ends up in the hospital because he'll eat a big bag of M&Ms.”  I was kind of shocked.  Shocked because I wasn’t the only one with diabetes.  Shocked because I wasn't the only one who wasn't doing very well with my diabetes management.  And also shocked because this poor guy kept ending up in the hospital.  After all, I ate more than my fair share of M&Ms as well, but I was okay.  I couldn’t imagine what I was doing, or actually not doing, could land me in the hospital.

I wish I could say this was a wake-up call and I started working harder at diabetes.  But that wouldn’t come for many years later.  I wish I could say I talked to this roommate and commiserated about life with diabetes.  But I didn’t.  I didn’t know how to.  I didn’t have the tools.

I honestly believe things would be different for me if I was a college student today.  I lacked support back then, but today support is ready and waiting.  One great source is The College Diabetes Network.   They have launched Off to College Booklets for students and parents. You can check out a preview of the Parent Booklet and the Student Booklet and can request free copies to download here.

I really wish resources like these were around when I was in college.  And I wish my college had been a part of The College Diabetes Network.  Maybe it would’ve helped me feel comfortable enough to talk about diabetes with my friend's roommate.  And maybe, all these years later, we’d still be in touch.

Instead I wonder how things turned out for him and hope that he’s doing well.

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…..

Insulin for Syrians #insulin4all

It is easy to complain about living with diabetes.  It is easy to be frustrated by insurance policies and the hoops we jump through for our diabetes care.  It is easy to be angry about how much of our income we spend on diabetes supplies.  And it is easy to get burned out on diabetes advocacy at times, because there are so many important causes out there that need our attention.  I’m sorry to say I’ve felt the burnout quite a bit in the past few month.  But then, something comes along to put it all in perspective.

What if you didn’t know how or when you will get your next bottle of insulin?  What if you didn’t have test strips?  What if the healthcare system was completely shut down?  What if war forced you from your home?  How would you survive?

I'm fortunate to know I have the supplies I need to live with diabetes.

I have NEVER faced a question like that.  In over 36 years with diabetes, I always knew I could get the insulin I needed.  So the Insulin for Syrians appeal launched by T1International last week was a huge wake up call about how lucky, how privileged I am.  I made my donation last week, and I’m grateful to be able to help spread the word about this initiative, especially since today is World Refugee Day.

If, like me, the thought of wondering where your next shot of insulin is coming from scares you and makes you sad, please consider a donation to Insulin for Syrians.

The Healthcare Experience - #DBlogWeek Day 4

Welcome to day four of Diabetes Blog Week!  I hope you’re having a great time and are ready for our last few days.  So, let’s get to it.

Our topic today is The Healthcare Experience.  Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Overall I guess I’d say my healthcare experience isn’t so bad.  I mean, if I compare myself to my husband, whose only issue is some heartburn, then yes, things could be a lot better.  So at the top of my Wish List is not to have a chronic illness and my Biggest Frustration is diabetes.  But when you put that aside, I know my situation is pretty damn good.  I have a great medical team and am able to receive the things I need to stay alive.  But still, I have a few wishes on my list . . . .

Wish List for My Endocrinologist:  Not much on this one.  We respect each other and take on my care as a team.  You never make me feel rushed during my appointments, and yet you are also always on time.  (I never have more than a few minutes to wait once I arrive for my appointment.  Somehow you and the office staff have scheduling down perfectly!)  You explain things thoroughly and also answer each and every question I have.  Although I have to mention, when I saw you two weeks ago and we gave my basal rates and carb ratios an overhaul, we definitely dialed the insulin back too much.  I was stuck in the 200s for days and couldn’t come down until I rage bolused!  It’s okay though, you’ve taught me well and I’ve tweaked things a bit more and have landed somewhere in the middle between the old settings and the new and things are going splendidly.

Wish List for my Optometrist:  Not much here either.  I’m trying to remember how long I’ve been your patient, and it might be about 30 years now, right?  You’ve always made me feel respected.  Back when we discovered some small bleeds in my eye, you found a balance of treating the matter seriously without making me panic more than I should.  We stepped up my monitoring, but as you predicted, things cleared up on their own.  If things should ever start to decline again, I am confident that you will help me get the best care and the best outcome possible.

Wish List for my Insurance Company:  Yeah.  This is the part when I have some major grumbles.  “We’re in this together.”  No, we aren’t.  You make me fight for the number of test strips I need.  You make me fight to keep the meter that communicates with my pump.  You’ve forced me to change my insulin, when I’ve been doing so well on my current brand for eight years.  You leave stupid messages on my voicemail that insinuate I’m an idiot.  Seriously, if I have questions about taking my medications, I’m certainly not going to ask your pharmacist, who doesn’t know me at all.  I have enough common sense to call my doctor, who knows me well and is the one who prescribed the medication in the first place!  And while one-on-one coaching with a health advocate for my chronic condition sounds like a good idea, it was somewhat discouraging when I spent an hour on the phone with her only to hear her say “Wow, you know more than I do.  You could be doing my job.”  You think??  (Although I will dial back my rage a bit and acknowledge that the health coaching is probably very beneficial to many patients who haven’t already received the proper education.  So okay, you get a point for that.)

Wish List for The Healthcare System Overall:  I feel the healthcare system in our country is so freaking broken, I don’t even know where to begin.  All patients need access to the tools they require to stay healthy.  And that access need to come at an affordable cost.  I know I have my grumbles (see above) but I also realized that I am so so blessed and yes, privileged, to have the things I need - even if the costs are very high and the insulin isn’t the best brand for me.  People over 65 should not have to give up devices that are crucial to their care and wellbeing.  People should not be on the brand of device that their insurance company dictates they use, but should be able to use the brand that works best for their personal situation.  Same goes for medication brands.  And mostly, people should not have to choose between buying the things they need to stay alive and healthy or paying their mortgage and putting food on their tables. 

This is just the tip of the iceberg, and I realize my Wish Lists didn’t turn out to be actual lists but are discussions instead.  (Oops)  But there are probably about 100 other posts to be read today, so I’ll end here and pass the torch to other #DBlogWeek participants who have important things to say on this topic . . . .



You can find more posts about The Healthcare Experience on this list.

What is Diabetes Blog Week?  Click here for an explanation and to sign up.  You can also check out the Participant’s List here.

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?

What I Don’t Know CAN Hurt Me . . . .

"Ignorance is bliss." "What you don't know can't hurt you."  I suppose in some instances these statements may be true, but mostly I don't agree with them. And I especially don't agree with them when it comes to my life with diabetes.

Over the past decade or so, I’ve become increasingly hypoglycemic unaware.  Not every single time, but more often than not.  As a rule, by the time I feel any low symptoms I am pretty damn low, like in the 50’s or below.  And that’s why I depend on my Continuous Glucose Monitor (CGM).

It’s scary to think about living without a CGM.  I’ve heard that if you run your blood sugars higher for a while, you can get back some of the sensitivity to lows.  But that’s not  a great trade off because high blood sugars can come with terrible consequences as well.  So I depend on my CGM to let me know that I’m heading into a potentially dangerous blood sugar situation.  It often helps me correct the plunge before things get scary.  And it not only helps the dangerous lows, but it alerts me to highs as well.  My CGM helps me correct out of range blood sugars, when without it they might stay too high or too low for far too long, causing damage to my body.

I am 47 years old and I’m lucky that my insurance covers my CGM.  Those who have aged into Medicare aren’t as lucky.  I find this ridiculous and scary, because I know just how vital a CGM is to my diabetes management ( and I’d guess the diabetes management of many others as well). 



Why doesn’t Medicare cover CGMs??  Honestly, I have no idea.  It doesn’t make sense.  And I’ve been part of the JDRF movement to try and change that.  At Government Day last spring, I joined my fellow Advocacy Team Chair volunteers from around the country and we spoke to leaders and staff on Capital Hill about this issue.  I believe it was discussed again at Children’s Congress in July.  Action alerts continue to go out about the bills aiming to facilitate Medicare coverage of this vital technology.




We’re getting there, but we have a long way to go.  Please, if your Representative hasn’t signed on to HR1427 yet, email them and urge them to do so.  Even if you’ve sent an email in the past, now is a great time to send another!




And the same goes for the Senate and S804.  If your state isn’t colored dark greenish (teal??) on the map above, click here and email your Senator.

People on Medicare need access to CGMs.  Because what we don’t know can hurt us.  #MedicareCoverCGM

**  I hope that by the time you read this post and click the graphics above, the sponsorship numbers will be higher than shown here.  Because I hope new cosponsors are signing on every day! **

A Very Long Time . . . .

Nope, this post isn’t about how long my new computer was broken.  (Almost two months, until we finally got Dell to send a tech to our home and he replaced the faulty motherboard and had it up and running in about an hour.  But who’s counting.)  It also isn’t about how long it’s been since my last post.  (Which is, of course, due to being without my laptop.)  This post is about a small but weird thing that happened during my fourth and most recent trip to JDRF Government Day a couple of weeks ago.

Every year, each advocacy volunteer stands up and gives a short introduction.  It takes quite a while because there are hundreds of us in attendance, but I really love it because it helps us connect with each other and it’s inspiring to hear everyone’s stories.

When my turn came around, I stood up and spoke into the microphone.  “I’m Karen Graffeo and I’m the Advocacy Team Chair for the Greater New Haven, Connecticut chapter.  I was diagnosed with Type 1 in . . . . . “  And suddenly, for a brief second, I felt completely thrown.  It seemed like such a very long time since I was diagnosed and I felt the weight of the years crashing over me.  I had to take a slight breath before I could continue with “1979.”.  It all happened in an instant and I’m sure nobody even noticed.  But it really caught me off guard.

1979.  For the most part, that doesn’t bother me.  It is what it is, and I’ve met many people (and there were many in the room that night) with diagnosis dates much earlier than mine.  I’m not sure why it bothered me for that odd moment.  Maybe because, if I really let myself stop and think about it, 1979 certainly is a very long time.



Another new experience this year, I discovered The Summerhouse on a solo trek back from Capital Hill.  It’s very cool and I can’t believe I’ve overlooked it in past years!

(Almost) Wordless Wednesday - #SpareARose

This is the insulin that lives in a drawer in my refrigerator, next to the cheese compartment.  I’m lucky to know it’s there, ready to keep me alive for the next three months.  I’m lucky to know that as I use the bottles up, I can order my next three month supply so it’s ready and waiting when I need it.

This is my insulin pump.  The icon in the upper left corner is filled in with gray, showing that I’m lucky to have a full reservoir of insulin to get me through the next three days.  The large numbers toward the right show my insulin bolus being delivered so I can enjoy . . . .

. . . these festive cookies I’ve baked.  I’m lucky to have a wonderful husband to share them with as we look forward to Valentine’s Day together.  I’m lucky to live in a time and in a part of the world where I have the medications and devices that allow me to eat a cookie (or two) without shooting my blood sugar dangerously and deathly high.

This is Spare A Rose.  It’s a reminder that not everyone is as lucky as I am.  It’s a reminder that Pete and I don’t need to spend a lot of money on flowers and chocolates and jewelry and other gifts.  We need to help others who can’t afford the insulin they need to survive.  Each $5 donation provides life saving insulin or test strips to someone in need for a month.  $5 is such a small amount but it can do so much.  Please join me in making a donation so others can know what it feels like to be as lucky as we are.

Bitter-Sweet Chips . . . .

Here in New England it’s way to cold to venture out today.  So instead, I’m venturing out virtually to hop around the web.  Join me?

• Spare A Rose is in full swing again this year.  If you buy your Valentine just one less rose and donate that cost, you can provide ONE MONTH of insulin to a child and save their life.  Hard to argue with something as simple as that, right?  Please make your donation now and help spread the word about #SpareARose.  Flowers die, children shouldn’t.
• Sara is celebrating her diaversary by matching Spare A Rose donations.  And that is pretty darn awesome.  You’re going to donate to Spare A Rose anyway, right?  So let Sara know and she will match your $10 donation.  (Of course, you can donate more than $10, which I did, but just let her know you donated at least $10 for her to match.)
• As I mentioned above, the mild winter we started with here in New England has more than made up for itself.  An extended forecast showing nothing but snow and below freezing temperatures does nothing to pull me out my current spell of depression.  And no, I don’t want to build a snowman, thank you very much.
• Three more of my posts have gone live over at the ReliOn blog.  This time I’m weighing in on finding the right doctor for you, dealing with foods that cause blood sugar problems, and finding support (which is, of course, a topic near and dear to me!). ** My disclosures can be found here. **
• You probably know today is Blue Friday, right?  But did you also know today is also National Wear Red Day? This year I’m wearing red in honor of my friend Leigh, who shares some of her story here.  We’re very thankful to still have her here with us.

Okay, it’s time to crawl back under my blankie.  And maybe brew another pot of coffee.  Stay warm!

Let Your Patient Voice be Heard . . . .

For the past few years I’ve enjoyed reading about the DiabetesMine Innovation Project.  The opportunity for DOC members, as patients, to discuss what we need and want with the people who are making the products we use and the policies that affect us is so important.  And I have such appreciation for all of the past delegates who took the time to be involved.

This year is particularly exciting for me, because I’ve been asked to be part of the selection committee and to attend the summit.  I can’t imagine how hard a task it will be to choose 10 delegates from this year’s submissions.  But I’m up to for the challenge - and I want YOU to make it harder!!

There is still time to get your Patient Voices application in.  You can win a scholarship to the 2014 Innovations Summit on November 21st at Stanford School of Medicine.  To apply you need to review a diabetes product on video for the DiabetesMine Test Kitchen and fill out the Patient Voices application.  Listen, we use our diabetes products day in and day out - so a review is no sweat, right?  Right!!  You have until next Friday, June 20th, to apply.  So what are you waiting for?

For more information and to hear what past participants have to say, be sure to check out Amy’s post on Diabetes Mine.  And don’t forget to review the contest rules here.

** As part of the Patient Voices selection committee, I will attend this years Innovation Summit on scholarship. **

#JDRFGovDay Highs and Lows

I always struggle to write up event recaps because I'm just not good at them.  I tend to draw a blank on what words to use other than “it was so awesome, you had to be there to understand”.  Great, huh?  So this time I’ll try the old bulleted list to attempt to describe my four days at JDRF Advocacy Government Day, where I joined about 150 other Advocacy Team Chairs and advocates from JDRF chapters around the country to bring our message to Capital Hill. 

• HIGH:  Meeting with Senator Murphy and health staff from the offices of our Connecticut representatives to thank them for their continued support and to urge them to help ensure the Special Diabetes Program is renewed.  We explained how critical the $150 million dollars provided by the SDP to the NIH is for diabetes research.LOW:  A longer than expected walk to our very first meeting of the day, which brought on one of the lowest lows I’ve had in a very long time.  It left me feeling like I had been run over by a truck for the rest of the day.  But I did what any of us would do - sucked it up and powered through.  PWDs are STRONG!!  (Well, okay, I whined a lot too.  Maybe I'm not that strong.)
  

• HIGH:  Walking into Congressman Courtney’s office and having his wonderful Health Aide not only recognize me on sight, but notice that  my hair was different and compliment me on it!  (The pictures don’t show it well, but I dyed it red last week.)  Knowing she remembers me and our previous meetings means we can jump right in with less background information and more important details each time we meet.LOW:  During our meeting my CGM alarm went off a billion times due the a major rebound from my earlier 28.  (BEEP BEEP BEEP HIGH PREDICTED!!!  BEEP BEEP BEEP RISE RATE!!  BEEP BEEP BEEP HIGH!!!  BEEP BEEP BEEP OMG YOU ARE SO HIGH!!!)
  HIGH: Having a real example of life with diabetes to show the aide.

• HIGH: During the final dinner we saw a cool new “something” that is hopefully headed for human clinical trials this year.LOW:  It’s proprietary so I can’t show you or tell you anything more about it.  But trust me, it has very awesome potential!!

• HIGH: Finally banishing some of my shyness and heading to the bar with great new friends.
  Left to Right: Marcus, Jonathan, Lisa, Deb and Ann.
  LOW:  Major sleep deprivation.  (Totally worth it though!!)

• HIGH:  Reconnecting with old friends, some of which I met IRL for the first time. Clockwise from top:  Meghann; Kathy; Jeanne and Flat Robby; Beth; and Mellissa and JuicyMama.
  LOW:  Saying good-bye to them all when it was time to head home.

• HIGH:  Knowing that I’m doing something to help make life better for everyone with Type 1 diabetes.HIGH: Letting you know how important it is for you to use your voice too!  Please sign up and become an advocate - it’s quick, easy and painless!  You’ll get a few action alerts through out the year with easy detailed instructions to email or call your representative and let them know how important diabetes funding is.  Please please please add your voice to our ranks here.
  LOW: This time there isn't one. Everybody wins!!

A Beautiful(?) Day in the Neighborhood . . . .

About an hour ago I was on the phone with Pete when suddenly we got disconnected.  My t.v. and internet were down too, so I assumed it was a cable provider outage due to sun spots.  (I know, sounds crazy but it’s a real thing.  I used to work for a cable company and I swear it’s true!!)  I decided to go dry my hair but the blow dryer wouldn’t work.  Crap, it wasn’t a cable outage, it was a power outage!

I saw my neighbor outside so I went (into the 20 degree weather with my hair in a wet towel) to ask if he’d lost power too.  He had, and another neighbor came out to say he had just reported the outage. 

Photo Credit

And then the first neighbor said “Hey, I have another question for you.  You have diabetes, right?  My wife has diabetes too and she brought all her diabetes levels down with okra.”

Me: “Good for her.  But she had Type 2, which means her body doesn’t properly use the insulin she makes.  (An oversimplification, I know, but I was trying to start somewhere.)  I have Type 1, which means I don’t make any insulin at all.”

Neighbor:  “Type 1, Type 2, it doesn’t matter.  Do you know what okra is?”

Me:  “Yes.  I like it fried.  Although that isn’t very healthy.”

Neighbor:  “Well, she brought all her diabetes levels down with okra.  Just chop it up and put it in water for eight hours and then drink it.”

Me:  “I'm glad for her, but I don’t think okra will work for me.  I have Type 1, my body doesn't make any insulin.”

Neighbor:  “It doesn’t matter.  She has friends with diabetes and she turned them on to the okra.  A few of them have that pump thing, so that means their diabetes is really bad.  And the okra brought all of their diabetes levels down too.  You just have to drink it twice a day.”

I know he doesn’t know a lot about diabetes.  And I know he’s one of those people who always thinks he knows everything, on every subject.  So today, as I stood out there freezing, I decided it wasn’t worth the advocacy effort to attempt any more explanations.  And just then, the second neighbor yelled from his house the the power was back.  I thanked the first neighbor and told him I'd look into the okra thing (yes, I flat out lied) and came back inside.

I feel bad that I didn’t do a better job of explaining to him.  I feel scared for him and his wife, because I don’t think they really understand diabetes.  And I’m disappointed in myself that I didn’t try harder.  But some days, I just don’t have it in me.

Flowers and Chocolates and Insulin . . . .

Valentine’s Day is coming up quick.  I’m definitely a hopeless romantic so I’ve always loved Valentine’s Day, even when I was single.  Pete and I usually celebrate with flowers (for me) and chocolates (for both of us) and a fun dinner out.

I really love flowers - my grandparents were florists and flowers make my day.  But honestly, I don’t really NEED flowers.  And as much as I consider chocolate a basic food group, neither Pete nor I really NEED chocolate.  The best part of our dinner out is just sitting down together and spending time with each other.  But what if that wasn’t possible? 

What if Pete and I couldn’t spend time together because I was no longer here?  What if I died because I couldn’t get the insulin that I, as a Type 1 diabetic, needed to stay alive?  It’s almost impossible for me to imagine.  Over the years I’ve had to fight to get the number of test strips I need, and to get a CGM, and a very long time ago I had to fight to get syringes covered by my insurance.  But I never, ever, in 34+ years with diabetes, had to fight to get insulin.  It’s probably something I just take for granted, those little vials of life in my refrigerator.  And that makes me very lucky.

This year I’m giving back to those who aren’t as lucky.  I have my husband and I have insulin . . . . there isn’t much else I need to feel loved.  So Pete and I are putting our Valentine’s money where it is needed - the Spare A Rose campaign. 


For every $5 Pete and I donate, or for the cost of each rose or a few chocolates, we are providing one months worth of insulin for a child who would otherwise probably die.  I can’t think of a better way to spread the love.  And I urge you to join me and #sparearose or two and save a life right now.

http://SpareARose.org
www.SpareARose.org/give

Jump Started . . . . .

Let me say up-front that event re-cap posts never come easily for me.  I get home with my head swirling with experiences and information and inspirations that I just don’t have the words to convey.  I stare at a blank screen typing and backspacing and typing and backspacing over words that feel forced and contrived.  I eagerly read recaps from others who were with me at the event, grateful that they are better at sharing with our community than I am.  So instead of talking about everything we heard and saw and said and did at the 3rd Medtronic Diabetes Advocates Forum this past weekend, I will tell you what the forum meant to me.

It’s already been a cold, cold winter here in New England.  My poor little car starts very begrudgingly, and I know it’s only a matter of time before I find it completely stalled out on a frigid morning.  And I’ve been feeling exactly the same way.  I haven’t blogged much lately because my ideas for topics feel buried under sheets of ice in my brain.  My DOC interactions had silently run out of gas and I felt as if my headlights were dimming and faintly flickering out.

I wasn’t sure what to expect from the Forum this time around, but almost immediately I could feel myself coming back to life.  I think being in a room full of peers who passionately work for a cause close to your heart will do that.  But there was something more . . . . a feeling that, for the first time I can remember, we were all coming together - my peers in the DOC and the executives and representative at Medtronic - to not only brainstorm but to take actual real steps to set important things in motion.  Instead of talking about what we could do, we were actually starting to do it.

These people were my jumper cables.

Photo courtesy of the Medtronic Diabetes twitter feed.

For more about the nuts and bolts of the conference, please read the posts I linked in the first paragraph and read through #MedtronicDAF to find other posts I may have missed.  But personally, this Forum restarted my engine after it had sputtered to a halt.  I tweeted Monday morning that I hadn’t woken feeling so inspired and capable in a very long time.  I now recognize how often I talk myself out of trying things or exploring ideas (or more specifically, applying for conference scholarships) because I convince myself I will fail so why waste my time trying.  I realize now that we all need to try - and if we “fail” it’s okay because we haven’t really failed.  The only way we fail is by never even trying.

The Medtronic Diabetes Advocates Forum was in invitational event, during which my travel, lodging and meals were covered.  In addition, as always, my current Medtronic disclosure can be found here.

Walk the Walk, Talk the Talk . . . .

It’s that time of year again when my Facebook feed fills up with people raising money for their JDRF Walks.  My chapter had its walk on Sunday and I love to see so many come together to raise funds and promote diabetes awareness.  It’s a good thing to walk the walk.

As the Advocacy Team Chair for my chapter, I was also there to talk the talk . . . . about advocacy.  And to urge everyone to talk the talk to our legislators.  This is another important way to raise much needed funds for diabetes research.


What was I talking about at the Advocacy table?  Well . . . . .

• Did you know that for every dollar JDRF donates to research, the federal government donates more than $3?
• The more advocates speak up to their representatives about issues like research funding, the more likely we are to succeed when they come up in Congress.
• Congress must renew the Special Diabetes Program to ensure federal funding continues each year (currently $150 million annually).

**  talking points provided by the JDRF Grassroots team.

I want to thank everyone who has walked their JDRF walk this year.  And those who have supported a walk participant.  And now I want to urge you all to talk the Advocacy talk as well!  Sign up as a JDRF Advocate and let our government know how important diabetes research funding is.  Given the economic crisis happening right now, it’s more important than ever to speak up!

Blue Fridays . . . .

Quite often the only ones I see on Blue Fridays are my husband and my cat.  Not that they aren't supportive of raising diabetes awareness . . . . but still.

So celebrating Blue Fridays at Friends for Life, with my blue bracelet right next to my green one?  I have to admit, it's pretty awesome!!

Long Overdue . . . . .

So I’ve been putting off writing about Government Day because it’s really hard to write event recap posts, isn’t it?  Or am I the only one who feels totally overwhelmed and unequipped to put all of the experiences and inspirations into words.  It’s almost like trying to explain what a low blood sugar feels like - I can rattle off the symptoms but you won’t really get it unless you’ve had a low too.  But going to Government Day is a million times better than having a bad low, so I really want to try to bring some of the experience to you.

When I look back on my four days in D.C., three major components stand out.  The people I was with, the information that was shared, and the time spent advocating to our government representatives.  I’m going to start with the whole reason more than 160 volunteers traveled to D.C. - advocating on Capitol Hill.

I never would’ve imagined I’d right there in front of the U.S. Capital building.

When we storm “the Hill” on our last day and a half in D.C., we are well prepared with a clear mission. Last year it was to urge our officials to support the renewal of the Special Diabetes Program. The SDP has two components and each piece provides $150 million towards diabetes research. It was renewed as we rang in the New Year as part of the Fiscal Cliff package, so our mission this year was to thank our representatives for the renewal. However, it was only renewed for one year, so we also let them know we’d be contacting them later in the year to ask for support again.  It’s important to lock in a renewal as soon as possible, because the funding ensures that the research being done now on things such as the Artificial Pancreas will continue.  After all, if I was a researcher working on a project whose funding was about to run out, you’d better believe I’d look for a new project to work on that had funds locked in.  There are so many exciting treatments and technologies being developed for Type 1 Diabetes right now and it’s important to ensure they will continue.  (More on that when I write about the information presented at Government Day!)

There is an amazing feeling that comes from being up on Capital Hill working for something you are passionate about.  I walk the halls of the Senate and House offices knowing that many aren’t lucky enough to get the chance to experience what I’m experiencing.  Honestly, I’m complete crap when it comes to fundraising - always have been and probably always will be.  But when I’m advocating on the Hill, I’m helping to raise $300 million for diabetes treatments and technologies.  Not too shabby!  I team up with the advocates from the other Connecticut JDRF chapters and we educate our officials about the research going on and about what living with diabetes (or being the parent of a child with diabetes) is like.  I often can give them a first hand example, as all that walking around Capital Hill usually has my low alarm blaring as I chomp glucose tabs in the Congressional offices!

Participating in Government Day also reminds me of how lucky I am that the members of Congress from Connecticut are all very supportive of diabetes issues and funding.  It’s eye opening to see that not all states can say the same.  Hearing stories from other advocates about tough meetings on the Hill makes me appreciate the reps I meet with all the more.  It also  makes me appreciate my fellow JDRF Advocacy volunteers who don’t give up even when their representatives aren’t receptive to our cause.  It helps me remember just how much each and every constituent's voice counts and how important it is to let the government know how crucial diabetes funding is.  It’s why I’m proud to volunteer as a JDRF advocate and why I hope everyone who reads this post will sign up too.

Watch Over Me . . . .

This weekend I’ll be in D.C. to represent my chapter at JDRF Government Day.  This is my second year participating, so luckily I’m  not quite the newbie I was last year and I guess I kind of??? know my way around.  I’m excited to see the other advocates I met last year and meet some more volunteers that I haven’t met yet.  I have so many great memories from last year’s event, but this morning I find one keeps running through my mind.

During our first breakfast my fabulous Grassroots Team Leader, Mary, came over to say hi.  As we chatted, she told me something that resonated with me and that I’ve often thought about over the past year.  She said that at these events, she keeps a careful eye each morning to make sure all of the adult Type 1s on her team make it to breakfast and are accounted for.  In short, she watches over us to make sure nothing happened while we were sleeping alone in our hotel rooms.

After living with diabetes for more than 33 years, or 3/4s of my life, one would think I have this down, right?  But guess what?  I don’t.  I work hard and I do my best, but the truth is that diabetes can still throw a dangerous curve.  It has happened to me.  It has happened to those I love - off the top of my head Scott, Scully, Martin, Stephen and Kerri.

I try my hardest to live a confident and empowered diabetes life.  I try not to focus too hard on the negative things about diabetes, and to instead celebrate the positives when I can find them.  I try not to let too much fear creep in.  But the truth is that even if I do every single thing right, there is always a chance diabetes will suddenly strike and there is a chance I won’t survive.  That is the reality.  That is a huge part of why I’ll be in D.C. this weekend meeting with our government representative to tell my story and yours.  That is why we all need to do all we can to keep sharing the whole truth about life with diabetes.

I’m so thankful to know I have Pete watching over me when I’m at home.  And I’m so thankful to know Mary will be watching over me this weekend.

Wordless Wednesday - Gov Day Prep

As the volunteer Advocacy Team Chair for one of the local JDRF chapters, I’ll be heading down to Government Day in a few weeks.  Which means setting up my meetings with my government representatives and their staff.  Yay!!

Interested in learning more about JDRF Advocacy?  Okay, just click here.

No Humor in Misconceptions . . . . . .

Every morning, once the coffee is brewed, K.C. is fed and Pete’s lunch is packed, I settle down with my caffeine and my email inbox.  This email was waiting for me today.

Click to enlarge!!

I was hopeful!  I imagined a funny bit about inhalable insulin.  Unfortunately, that wasn’t what I found when I clicked over.  Instead, it was a bit that enforced the misconceptions that ingesting sugar gives you diabetes, and that cinnamon cures it.

My email reply?

I’m very disappointed in this video. I watched it hoping to see a funny bit about inhaling insulin, but was extremely disappointed to find this was just another case of spreading misconceptions about diabetes. Most of us in the diabetes community are working hard to make the general public understand that you do not get diabetes from eating sugar, and that diabetes can not be cure by eating cinnamon. I know the video is meant to be a joke, but the unfortunate reality is that although people will understand the juice box is a joke, they will not understand that the messages about sugar and cinnamon are inaccurate. It is my opinion that very few, if any, advocates in the diabetes community will get a chuckle over this video. Humor is important when dealing with chronic illnesses, but that humor needs to be found in a responsible fashion that will not spread misconceptions.

I am all for using humor to cope with diabetes.  Hell, at times I think if I didn’t find the humor I might go insane!  But I can’t see anything funny about reinforcing diabetes misconceptions.  Those misconceptions are a big reason that people with diabetes are blamed for our conditions.  Those misconceptions can hurt fundraising efforts for better treatments and a cure.  Because seriously, would you donate to diabetes research if you believed that a cure was as simple as not eating sugar and having some cinnamon?  I know I sure wouldn’t.

I must admit, I did get one chuckle out of this whole thing.  I find it pretty funny that they said “Conan gives him his just deserts”.  Really?  Conan makes the viewer hot, dry and sandy?  Actually, when I’ve miscalculated my dessert bolus and my blood sugar is high, my mouth and eyes sure do feel like a desert.  So yeah, that’s kind of funny.

I'm intentionally not linking the video, because I don't want to help drive up its views.  But if you've already seen it, I'd love to know what you think?  Did this video make you chuckle?


****** UPDATE********
I received the following reply to my email:

Hi Karen,
Thanks for the feedback. I apologize for misjudging the fit of this video. It's certainly not meant to spread misconceptions - the running joke is that Conan is always wrong about these "Fan Correktions" and pretends to believe he's right by making even more absurd, wrong arguments. I think that may have been lost out of the context of the show.

Thanks for watching. We really do appreciate it.

Thanks,
Diana

I do appreciate that she took the time to reply and explain.  I do understand that, since I'm not a regular viewer of the show, I may not get the ongoing joke of this segment.  But overall, I'm still disappointed.  Because if I don't get the joke, that means lots of others probably don't get the joke either.  But it was nice to get a response and apology for my concerns, and I hope they will put a little more thought into matters like this next time.