Diabetes Supplies... Our *FIRST* Vlog

Tuesday, March 29, 2011

Last week, I was given the opportunity to participate in "Submit Your Kit"!



What's that?

Well, it's the chance to talk about what is in your diabetes kit!  And by making your voice heard, make a difference in diabetes care.

I feel like am constantly on the search for the "perfect" diabetes bag.  The "perfect" diabetes organizer.  The "perfect" fit for all members of my family who carry that little bag of preciousness day in and day out.

That is no easy task.

What is easy?

Telling you what's in our kit!

Oh... but not just by WRITING it.  No, no... after watching the amazing Reyna do a vlog... Wendy and I thought - "Hey!  WE can do that, too!"  And so we did....

Go get a little popcorn and enjoy the show!  In true Sweets fashion, she took over and the video is a wee bit longer than what was originally planned.  But I think you'll enjoy it, nonetheless!

(And don't miss the debut of Sparkles - Sweetpea's Unicorn!  She just picked it out of the Sale bin at Target last night. And she picked the name on her own... I swear!  I don't know if he's really an advocacy unicorn like Kerri's Sprinkles... but I'm sure he has diabetes... just like all the other stuffed animals and dolls living at our house!)

(AND.... remember that the camera adds 10-30 pounds.  Just sayin'...)




To see more of our videos, visit the new tab "Channel D: Sweet TV" above!

 And here are my pics...



(This is a good reminder for me to replace the batteries and extra container of test strips that I took out and used not too long ago!)

"Submit Your Kit" is a project of the IA Collaborative.  They describe themselves as "a creative enterprise specializing in branding, strategic research, product planning, graphic and interface design. Through contextual research and validation, they uncover real consumer needs, define viable business opportunities and deliver creative solutions."

I don't know about you, but when it comes to our diabetes bag, I am ALWAYS looking to improve... always looking to a creative solution to the craziness of lugging around medical equipment day in and day out.

The IA Collaborative is trying to understand the needs of people with diabetes (YOU) so that they can improve the process and tools they (YOU) use to help manage their (YOUR) everyday lives.

What they want from YOU?  This is all it takes....

1.  Grab all of the things you bring with you during the day to manage your diabetes.  Spread them out on a table and photograph them from above.

2.  List the items in your photo.

3.  List any challenges you face or ideas for how your kit, the items in your kit, or the process of managing your diabetes can be improved.

4.  Provide your first name, diabetes type, and age.  Email your submissions to dbrooks@iacollaborative.com

Click to read more about "Submit your Kit"!

Have fun....!

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Diabetes Burnout: Age 5

Monday, March 28, 2011

Diabetes Burnout.

It's one if those things you don't expect to happen to YOU - or HER. At least not YET...

But just like diabetes doesn't discriminate in age or gender or race... Neither does diabetes burnout.

When we went to DC, we moved Sweetpea's site from her arm to her tush. We thought it would be easier for swimming. No problem there...

When we got home, we needed to change the site. I wanted to go back to her arm. She wanted to stay on her tush. Fine. I totally get that wearing the pump in a tank on your back might be uncomfortable at times and taking a break is ok.

My only issue is that arm numbers are way better than tush numbers. Better absorption in the arms, I think. And with Dex on her tush already (She thinks Dex is too big for her arm and I agree!), that leaves very little room to move the pump sites around. (ok... that was 2 things!)

At the next site change, I asked again if she wanted to go back to her arm.

"NO!" she yelled.

I was a bit taken aback at this strong reaction.

"Why not?" I asked. "Why don't you want to go back to your arm?"

"I just don't."

And my inner dialogue begins.... "I don't want to make her do a site somewhere she is not comfortable with. I want her to feel like she has some control over this and it's not something that we are just doing to her all the time. However, we are OUT of real estate back there. I don't even know if I can FIND another place for the site on that cheek (the other cheek is totally taken up by Dex). And she was FINE with the arm last week. What is going on?!?"

So I try to explain...

"Sweets, I'm just worried that I can't find a place for the new site back there. It's good to rotate the sites around because that helps you get more numbers in range and that helps you feel really good."

"I don't like the arm. I don't like it there."

"Why not? You've been wearing it there for months. What's bothering you?"

I don't like it. I don't want to do a site change. It itches."

Okaaaaay.... She has NEVER complained about it itching.

"Oh. I didn't know that it itches. We can put some cream on it to help...."

"I just don't like it. I don't want to do it."

And she threw herself face down on her pillow and started to cry.

*sigh*

I know how she feels. I feel the same way. It's too much. Too much diabetes. With no time off for good behavior.

To be fair, J thinks that it was less about diabetes and burnout and more about being a difficult 5 year old. He thinks that if I had said "Let's out your site on your tush!" she would have had a fit about that, too, because often she wants the opposite of what I want - just for kicks.

I know it's hard to believe looking at that sweet little face but she can be very stubborn and difficult! I, of course, have no idea where she gets this from!

He might be right. She was tired....

But all I could think of was the day the previous week when we had done a site change at school and she had cried and yelled, "I hate diabetes!" down the hall. She tells her teachers that she hates diabetes. Why isn't she telling me?

It broke my heart. Again.

It's one thing for ME to feel this way.  But I'm trying to keep HER from feeling this way as long as possible.  Like forever.

It's HARD to do the job of a body part that went into retirement at an early age.  Especially when it's not eve one of YOUR body parts (although since she's my child and came from my body, I kind of feel like it IS - at least partially - my body part, too!)  It's hard not to feel resentment that said body part if off living it up - probably in Florida - enjoying early bird specials and frequent trips to the beach.  I picture her pancreas on a chaise lounge by the ocean, sipping a pina colada while wearing shades... Sighing and saying, "Ahhh... this is the LIFE!". 



We went ahead and did the site on her tush. I moved it out a bit further - where there was still tissue but it wasnt totally on her side... She was happy. I figured we'd deal with it later!

Some of my wonderful D Mama friends (Tracy, Heidi, Lora to name a few) suggested that I try a reward for doing an arm site. So last night I was prepared. A box of goodies to choose from if she chose an arm site. But I would not be upset if she chose the tush. It's her body and her decision!

But I didn't need it.

Last night was site change night. I suggested an arm site.

"But I'll get cold!"

"What?"

"I get cold. With just my tank on."

Ohhhhh..... She wears her tank when she goes to bed. After we have done her change, we put her Jammie shirt on. So she didn't want to do a site change on her arm because she got cold. That was it.

I told her we would put the Jammie shirt on and I'd work around it. And she was fine with that. Problem solved!

So her site is on her arm....



And all is well!

(Yeah, she's rockin' the shades in doors... and it's like 30 degrees out... I don't know...)

I wish ALL of our D issues are this easy to fix!

** WARNING!  Kinda gross pic below...**

THIS is what the tush site looked like when I took it off...



Ouch!! She said it doesn't hurt. But I'm glad she is back the the arm (quietly, of course)! The numbers with that site were as ugly as it looks.


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REAL Superheroes....

Friday, March 25, 2011

 I have a MILLION things to tell you....

I have more JDRF Government Day fun...

I have some issues we've had since being home...

I had a "light bulb" moment with Sweets...

And I have a really cool project that I want to tell you all about...

But on the way to the computer, LIFE got in the way!

And this weekend, I'm attending a CWD technology conference in Cincinnati with Misty from Life is Like a Box of Chocolates!  And I'm sure I'll have some interesting tidbits from that to share!  My goal is to learn how to do a "real" and "successful" combo bolus!  I think that's do-able!

So, for today... I'm going to leave you with a picture that sums it all up! 

 No, No capes.  REAL Superheroes wear insulin pumps!

And sometimes....

 

Sometimes Superheroes don't wear the pump.  Sometimes the "other" Superhero just carries the bag of supplies, calculates the doses, changes the basal rates, counts the carbs, wakes up at 2 am to check blood sugar, orders the supplies, and advocates for her Superhero with a LOUD and PASSIONATE voice.

I think that in the DOC, we're ALL superheroes.  No cape is needed.

Don't you?

ps- I know I need a "dude" pic for the guys!  I'll work on it!

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JDRF Government Day: Hittin' the Hill

Wednesday, March 23, 2011

JDRF's Government Day is actually a four day event. Two days are spent in training and informational sessions. Two days are spent on Capitol Hill meeting with members of Congress.

The days that we spend on Capitol Hill are our chance to meet with our members of Congress. It's our chance to put a face on diabetes. It's our chance to make diabetes personal. It's our chance to tell our stories. It's our chance to stand up for our loved ones (or ourselves) and make our voices heard.

The days on Capitol Hill are what I was MOST looking forward to!

Let me loose and I can talk about diabetes all day long.  And that's just what I did!

Sort of...

Monday morning dawned very early.  Sweets was sleeping in between us and I had to remove an arm and leg that was strewn across my body before I could drag my weary self to the shower.  But before I could even put my feet on the floor.... I felt it.

"NO.  No, no no, no, no!  This is not good...."

I knew right away that I was in trouble.  Two words....

Stomach.  Flu.

SO NOT COOL!

My mom had it the week before and was OUT for days.....  The kids in my class have been passing it around like candy.  Sweets had it a few weeks ago...  I guess it was my turn.

I will spare you the gory details. 

Suffice it to say that I missed my Hill meetings on Monday.  Thank Goodness for the other advocate from Ohio!  He was a life saver!  He had no meeting scheduled on Monday so he took my four.  But I was incredibly disappointed.  I missed out on meeting with the Ohio Senators.

Tuesday morning came... and I was good to go.  I was NOT going to miss out on this experience!  I might have been slightly light headed.... I might have almost passed out in Rayburn building....  but sucked it up and put my game face on!

And it was an INCREDIBLE day!

We decided that it would be nice to take Sweets to my meetings.  SHE is the face of diabetes.  SHE is wearing an insulin pump and cgm.  SHE is the perfect model to really show what the artificial pancreas would look like and what it could do.  Plus.... (if I do say so myself...) She's pretty darn cute.  I might be forgotten... but that cute little gal with bows and the sweet smile and the big blue eyes???  She leaves an impression.

Sweetpea's job was the to be the official business card passer outer.  We had my JDRF business card (I feel so important!) and we had HER Diabetes Dude business card (because every 5 year old needs her own card, right?).  She took her job very seriously.

I started our meetings by introducing us and telling what it's like to live with diabetes 24/7/365.  We showed her little fingers... full of tiny holes after *only* 2 years.  We showed her pump and her cgm.  Sweets told what she thought of shots (Screwed up face... "Shots?  TERRIBLE.").  She was able to tell how long she'd been living with D and how much she hopes for a cure ("a LOT").

I did not cry.  Can you believe it?!?

I talked about the specifics of the APP.  I thanked our Congress men and women for supporting the SDP (or stressed our thankfulness that it was approved).  I explained what we needed from them (NOT MONEY - just a simple signature on the letter to the FDA Commissioner....read more here).

We met with staffers in many of the offices.  Everyone we met with was very kind and very interested in what we had to say.  All were patient with Sweets and interested in what SHE had to say.  All made us feel welcome.

We were lucky enough to meet with two of our actual members of Congress!

The first person we met in person was Representative Jean Schmidt (OH-2).

(You must forgive J's attire... We did not plan on him or Sweetpea attending the meetings!  He was there as a "backup" in case Sweets got antsy.  He was waiting outside the room for us - but Representative Schmidt insisted her come on in and make himself at home!)

She was incredibly kind and gracious.  Sweets had a little cold and she immediately got her a kleenex!  She has grandchildren of her own and showed us their pictures, which fill her office.  I was mortified when Sweets put her feet on the sofa during our talk and crawled across to get a better look at the pictures.  Representative Schmidt was so sweet!  "Don't worry about it!  I've got grandchildren!  And you're a tax payer. You paid for that couch! It's yours!"

She seemed genuinely interested in what we had to say.  She appeared very supportive of this new technology!  I have my fingers crossed that she will sign on to the letter!

The next Congressman we met was Steve Chabot (OH-1). 

When we entered his office, one of his staffers, Adam, greeted us immediately.  He knew exactly who we were and he told us that he had just talked to the Congressman and he was on his way back from a vote.  We waited a few minutes... Then he told us that the Congressman has asked to meet us in the Rayburn Room and he would take us there.

As we left the office and waited for the elevator, Adam moved is coat jacket aside for a split second... and I saw it.  Tubing.  At that moment, he asked us if Sweets was the only one who had D.  We said yes.  And he said, "Look what I have!"  And he pulled out his insulin pump!

How cool is that?!?

Adam was wonderful!  He was so kind to us!  We found out that he grew up close to where we live and went to college where I attended grad school.  He escorted us through the tunnels in the basement of the Rayburn building... through security... past the little monorail thing that only Members can use if a vote is going on... up the elevator.. and into the Capitol!  He pointed out the doors that the President enters when he gives the State of the Union address.  And he took us to the Rayburn Room to wait on the Congressman.

Congressman Chabot came in a minute later and sat down to talk with us.  He was incredibly kind.  As it turn out, his niece was diagnosed with Type 1.  So he knew a little about this disease.  At one point, he excused himself to go back onto the floor of the House to make sure he wasn't missing a vote!  When he came back, he told us that he usually does not commit to anything right away but that he could tell us right then that he would sign the letter and support us in this cause!  WONDERFUL!

And if it already wasn't awesome enough.... he took us on a little tour of the Capitol!  We walked down a hallway and he pointed out the view out a window.... a breathtaking sight of the Washington Monument.  He showed us around and told us different stories about the rooms and their history and interesting facts.  He could have gone on longer, but we had to get to our meeting with the Speaker of the House!



I was very impressed with Congressman Chabot.  He took time out of an obviously busy schedule to not only talk to us... but show us around.  His love for his job, history, and this country was obvious.  His kindness made our day... Made our TRIP!  It was a "once in a lifetime" experience that we won't soon forget!

We also had the privilege of meeting with the Speaker of the House, John Boehner (OH-8).  He was busy so we were able to meet with his Deputy Chief of Staff, Stephanie Milburn.  She was also very kind and interested in what we had to say.  She asked good questions and was also curious about what Sweetpea's symptoms were and how I knew she had D.



What an incredible experience!

I feel so honored to have been able to represent not only Ohioans, but ALL people with diabetes.  It truly was my honor and privilege to speak on your behalf.

I believe very strongly that we must make our voices heard.  And that one voice can make a difference.

I am humbled to have had the opportunity to be one of those voices during JDRF's Government Day!

Other Government Day Posts:
JDRF Government Day:  Part One
JDRF Government Day: Blogger Roundtable

**Disclaimer....  I am an Action Team Chair (basically I'm in charge of Government Relations/Grassroots Advocacy) for our local JDRF chapter.  JDRF paid my air travel, hotel, and some meals during Government Day.  J and Sweetpea paid their own way.  I just don't like to be away from my girl... or her Daddy... so I begged them to come!  JDRF did not ask me to blog about this event!  Everything I write is what I personally think.  I'm just telling it like it is... at least to me!**
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JDRF Government Day: Blogger Roundtable

Tuesday, March 22, 2011

One of the most exciting parts of the Government Day weekend was the Blogger Roundtable!

As I mentioned in my last post, I had the honor of meeting some awesome bloggers (Allison Blass, Cherise Shockley, Kelly Kunik, Kelly Rawlings, Kerri Sparling, Kim Vlasnik, Mike Hoskins, Scott Johnson, and Scott Strange) from the DOC! I found many of these folks shortly after Sweetpea was diagnosed. Finding other people who were living this crazy life made me feel not so alone.

I clearly remember sitting at the computer, with a 3 year old Sweetpea on my lap, and searching the net for diabetes information. I remember looking for blogs and pictures of people with diabetes so I could show Sweets that she was not alone.

So imagine my surprise when some of these wonderful bloggers recognized ME! Well... It wasn't ME they recognized... It was Sweets, of course! And they were just as nice in person as they seem on their blogs! And yes, I mean all of them!

After meeting a group of them (Allison, Cherise, Kim, Kelly R, Scott J, and Scott S), I pointed out to Sweets that they all had diabetes. And they were wonderfully open about their pumps and cgms. Sweets just giggled like she usually does.... But then she told me that they were all in her "Diabetes Club". AND.... She said she was terribly sorry but J and I could not be in the club because we don't have diabetes. So there!

 Kim, Sweetpea, Me, and Cherise

 Kelly K and Sweetpea - Can you feel the love here?  Sweets just adores Kelly!

** I wish I had been able to get pics of everyone... my camera was being persnickety and I was lucky to get what I got!**

I love that she felt this sense of camaraderie with them- adults that she did not know. Isn't that what the DOC is all about? Connections, relationships, the feeling of "same". And clearly it does not matter if you're 5 or 45. The sentiment is still there!

Saturday night was the Awards Dinner. I walked into the ballroom and stopped short. The room was filled with tables and people.... And I knew no one, really, at the event. A little overwhelming...! But before I could even figure out where to go, Kim invited me to sit with them. Thanks, Kim!

That was one of the best experiences! Everyone had their phones and cgms on the table. At one point, I looked around and realized that I was the ONLY person at the table without diabetes. And that was really cool! And I couldn't help but hope that someday Sweets will have a similar group of people that she can rely on for support and knowledge and friendship- people that really "get it".

Sunday afternoon was the blogger Roundtable. I was in Group One - the one that was broadcast live on Ustream!

As a member of the DOC, I was excited about this! The DOC has brought so much good into my life. Without the people I've met online, I don't think I'd be as far along in this journey as I am. I KNOW that the DOC has taught me so much- and helped me be a better pancreas for my daughter. Her care is better because of it. And that is priceless!! That is something that I want to share with the world!

I thought the presentation was great and really helped explain all this social media stuff to people who are not familiar with it.  Of course, being a blogger myself and a part of the DOC, it was all I could do to sit in the audience and be quiet!  I wanted to yell out things like, "So True!"  "Amen!"  "The DOC IS wonderful and all about support and encouragement!"  "Get involved, Get connected!  Don't be scared!"

But I was good and kept myself under control!  Blogging is just something that is near and dear to my heart!  I firmly believe that when PWD bloggers and Parent bloggers unite - the sky's the limit!

I really can't do the roundtable justice - but you can WATCH it for yourself!  I only wish I had been able to attend both sessions!

Of course, I LOVE that JDRF asked the adult T1's to be a part if this weekend. They have so much to offer us....

As a D Mama, I can talk all day on what it's like to raise a child with diabetes. But I can't tell you what it's like to LIVE with diabetes.

They can.

They offer us a glimpse into the future.

In the past, many people have felt that JDRF was part of childhood. They felt that it was not an organization that followed people into the adult world. That is a shame. And I'm glad to see that changing.

I want Sweets to have a sense of belonging and to find support throughout her life. Her LONG life.

And I have a feeling that JDRF is going to be that organization!

Click to read JDRF Government Day:  Part One

**Disclaimer....  I am an Action Team Chair (basically I'm in charge of Government Relations/Grassroots Advocacy) for our local JDRF chapter.  JDRF paid my air travel, hotel, and some meals during Government Day.  J and Sweetpea paid their own way.  I just don't like to be away from my girl... or her Daddy... so I begged them to come!  JDRF did not ask me to blog about this event!  Everything I write is what I personally think.  I'm just telling it like it is... at least to me!**

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JDRF's Government Day - An Overview

Sunday, March 20, 2011

Last weekend, I participated in JDRF's annual Government Day in Washington DC!

JDRF explains Government Day as "a 4 day event that is part training session, part research update, part networking opportunity, and part celebration of our Advocacy Program".

But however you want to define it, it was a blast!  And I am thrilled to have had the opportunity to attend!

J, Sweetpea, and I flew into DC on Saturday morning.  We've traveled and flown a lot with Sweets, so that part was old hat for us.  I was a little nervous this time about the new airline regulations and flying with an insulin pump and supplies.  But it was a non-event.  Sweets got her usual pat down and on we went!

I had not been to Washington DC since I was small, so I was really looking forward to the trip!  Sweets has been learning a lot about Washington and the Presidents in school - so she was excited, too!  As we were landing, she looked out the window and said, "LOOK!  Mom, I see a house!  It's white!  It's the White House!!!"  (It was not the actual White House....)

We checking into the hotel and found our room (#911 - Hmmmm....) and then headed downstairs to find some food!  And this was practically the last time I saw my family until Tuesday morning!!

Saturday evening was the Awards Dinner!  It was a very nice dinner and I had the pleasure of sitting with the D bloggers!  I was very excited to meet these folks in person, as I've been reading their blogs since Sweets was diagnosed!  I got to meet Allison Blass, Cherise Shockley, Kelly Kunik, Kelly Rawlings, Kerri Sparling, Kim Vlasnik, Mike Hoskins, Scott Johnson, and Scott Strange.  But that is a different story that I will tell another day....!

Sunday morning, we started training!

It was a little hard to concentrate seeing as THIS was the view from the window...





The morning began with introductions....  The sounds innocuous enough, right?  Yeah..... Not so much!  Luckily, I was one of the first people to speak.  We were supposed to tell who we were and who we were there for.  Easy peasy!

I'm Hallie.  I'm from Ohio.  I'm here for my daughter who is five years old and was diagnosed almost two years ago."

Oh... but others went into a little more detail...  And for the next  hour or so, I fought back tears and wiped my eyes and blew my nose. 

There was an older gentleman who said he was there for his son.  His son had done well taking care of his diabetes when he lived at home.  But once he went out on his own, he thought he was invincible.  He moved back in with his parents the last 10 years of his life.  He passed away in his late 30's.

Another person told the story of their second child being diagnosed.  This happened years after the first child was diagnosed.  And when they came home from the hospital, they found this child curled in ball on the darkened stairs, crying.  "She must be so scared!" he said.  "At least I was a baby.  I didn't know.  But she KNOWS what diabetes is like.  She must be terrified."

Listening to all those stories.... it reinforced why we were there.  To do whatever we could to advocate for diabetes research and funding.  To find a CURE for this disease.

We spent the rest of the morning talking about the Artificial Pancreas and our "ask" when we talked with our Congress men and women.

This year we were NOT asking for money!  Thanks to the SDP (Which was renewed last year and will bring $150 million annually to the NIH for type 1 diabetes research.  This is enabling the NIH to continue large scale clinical trials and initiate new trials.), we have money to work with.  What a blessing!

This year, advocates were asking their Congress men and women to sign a letter to FDA Commissioner Hamburg highlighting the need for guidance on the artificial pancreas.  To read more about the artificial pancreas, click HERE.

Here's what I find super exciting about the APP.  The technology is ready.  This science is ready.  We are just waiting on the FDA to give us some guidance in order for outpatient trials to begin.

Yes, folks.  It's ready!  READY!  The inpatient trials have been conducted and have demonstrated remarkable results!  It's time to bring the APP into the "real" world!  (Just had a mental image... "This is the true story... of eight strangers... picked to live in a house...wear an artificial pancreas... and have their lives taped... to find out what happens... when people stop obsessing about diabetes... and start getting real...The Real World.  I'd totally watch that!)

The sign on letter that we were asking our Congressmen and women to sign encourages the FDA to QUICKLY and SERIOUSLY consider "draft guidance" (basically a research framework) submitted by JDRF and other leading clinical experts.  It encourages the FDA to keep the process moving so that these new technologies can be tested and MADE AVAILABLE in the NEAR future.

At one point I heard that the APP could possibly be on the market in 3 1/2 years.  Imagine....  Wow!

Sunday evening, we picked up our packets of materials to give to our Congressmen and women on Capitol Hill!  I had so many I got my own bag!  That was a little daunting...

I also had the pleasure of meeting a few of the gals that I have "met" through Facebook!

Beth McCrary and Chris Dornburg were there as representatives from South Carolina!  I've talked with these ladies over Facebook and was thrilled to meet to meet them in person!  They were every bit as kind and wonderful as I thought they'd be!

Chris and Beth

Gary Hall (Type 1 and Olympic Gold Medalist) and Beth

Sunday evening, we had the pleasure of listening to Jeffrey Brewer speak.  He gave a "State of the Foundation" speech and then the floor was open for people to ask him questions.

I can't even begin to tell you how impressed I was with Mr. Brewer!  

Listening to him speak, I was not only filled with HOPE... but a sense of "WOW.  This guy gets it.  He KNOWS..."

And this is why...

Jeffrey Brewer was on top of the world. For years he had put in 100-hour workweeks as cofounder of two early Internet juggernauts: local guide Citysearch and the online advertising pioneer GoTo.com (later renamed Overture). But by 2001, with more than enough money to live on for the rest of his life, the 32-year-old handed off control of Overture and set out on a yearlong trip to Australia with his wife and two kids. Upon their return to the States, though, they noticed something odd. Seven-year-old Sean was unquenchably thirsty and urinating far more often than usual. On September 19, 2002, they took him to the pediatrician. The doctor gave him a urine test and announced without hesitation, “Your son has type 1 diabetes.”    -taken from an article in Wired.  Click here to read on...
Mr. Brewer was very open and answered all questions without hesitation.  As most know, there has been some controversy about the new direction of JDRF.  Some people were very upset and felt that JDRF was no longer focused on finding a cure.  I wrote about it here.

Mr. Brewer clearly stated that the JDRF is NOT turning it's back on a cure.  And here is what I found very interesting...

I always thought that the artificial pancreas would be a great new technology... a great step forward... but I didn't ever view it as having anything to do with the cure.  I learned from Mr. Brewer that an artificial pancreas may well be imperative to making a cure possible.  He mentioned several cure therapies that are in the works.  He specifically mentioned an islet cell transplant and stated that glucose is like poison for islet cells.  In order for islet cell transplants to work, people must be able to control their blood glucose.  Enter the artificial pancreas.

So, PLEASE.... don't think that the push for the artificial pancreas means that JDRF is forgetting about ever finding a TRUE cure (and, for the record, Mr. Brewer said that an artificial pancreas did not "feel" like a cure to him).  It's part of the process.  Not only in finding that cure.... but in ensuring that our Type 1 loved ones are alive and healthy enough to benefit when that cure is found.

Chris, Jeffrey Brewer, and Beth

I could have listened to him speak all night!  I left the room feeling energized and so incredibly hopeful!  It was the perfect way to end the day... and to begin the next step of the weekend - going to Capitol Hill and meeting with our Congressmen and women!

By this time, it was after 9pm.  My day had begun at 8am.  I was exhausted.  But I was going over my talking points for the next days meetings.  As I sat in bed, reading and thinking of what exactly to say about the artificial pancreas, I couldn't help but think....

JDRF began talking to the FDA about the APP in 2006.  That was the year that Sweetpea was born.  Little did I know that five short  years later I would be in Washington DC, getting ready to talk to Congress and advocate for diabetes research and funding... advocate for that little baby girl....

And I couldn't help but feel so extremely grateful to JDRF and those who walked this path before me.... for all they did to get us to this point... back when I didn't even know what Type 1 diabetes was...


Stay Tuned.... tomorrow I write about the DOC and the Blogger's Roundtable!

A big THANK YOU to Beth for letting me use her pictures!!

**Disclaimer....  I am an Action Team Chair (basically I'm in charge of Government Relations/Grassroots Advocacy) for our local JDRF chapter.  JDRF paid my air travel, hotel, and some meals during Government Day.  J and Sweetpea paid their own way.  I just don't like to be away from my girl... or her Daddy... so I begged them to come!  JDRF did not ask me to blog about this event!  Everything I write is what I personally think.  I'm just telling it like it is... at least to me!**
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The Teaser

Thursday, March 17, 2011

Whew! What a weekend!

JDRF's Government Day was.....

Amazing
Incredible
Inspiring
Heartwarming
Motivating
Exciting
Emotional
Fun
Full of HOPE

I can't wait to fill you in! I think it's going to be a week long feature so I can do justice to each part!

The only bad part?

Waking up Monday morning with the stomach flu! Horrible timing, right? It knocked me out for the day but I was back at it on Tuesday! I'm still a little "icky" so it may take me a few days to catch up, decompress, and return to normal!

But get ready!!! It was a "totally awesome" experience (according to Sweetpea- who did NOT want to go home!).

And I'm so excited to tell you all about it!!


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Winners and a Whirlwind Weekend

Friday, March 11, 2011

Whew! I made it!

It's been a CRAZY day! I know you've been waiting on the edge of your seats all day to find out who the FIVE people are who won my Sugar Bolus! I'm so sorry it's taken this long...

But I have good reasons!

First, I worked all day!

Then, Sweetpea has STREP. AGAIN! I don't think the poor child has been healthy for five days straight since January. I have to give D a hand, though. Without it, I would never have known this early. But she had some wonky high numbers last night that would NOT come down. I knew she'd been exposed - multiple times- so I looked in her throat.... and those tonsils were HUGE. She feels fine... no fever... no pain. We opted for the shot - a little one and done. I hoped that it would help keep her from getting any sicker and hopefully keep those bg's from getting too crazy. We can hope. Poor girl. She had a rough day!

Then... I had to go stand in the cold... in a rather LONG LINE... to get a certain new product that was available TODAY from Apple. :) Totally worth the wait!

THEN... I'm packing! I am headed to Washington DC tomorrow to participate in JDRF's Government Day! This is my first time attending this event... and I am stoked!

Government Day actually lasts for 4 days! It's "part training session, part research update, part networking opportunity, and part celebration of the Advocacy Program". About 150 volunteers, just like me, from around the country are on their way. We will be meeting with our Congress men and women on Monday and Tuesday! I'm excited to share my passion for JDRF and encourage our law makers to get involved and help us fight this disease!

This year, YOU can get involved in Government Day from the comfort of your own home!

How?

JDRF is really engaging the use social media this year. Some D Bloggers (Allison Blass, Michael Hoskins, Scott Johnson, Kelly Kunik, Kelly Rawlings, Cherise Shockley, Kerri Sparling, Scott Strange, and Kim Vlasnik) have been invited to participate in a round table discussion. This discussion will be on Sunday at 2:15pm EDT. It will be streamed LIVE through JDRF's USTREAM channel. The discussion will focus on how JDRF's Advocacy Program can more effectively complement the efforts of the DOC.  You can submit discussion topics through USTREAM, Twitter, and Facebook


We will also be live tweeting this entire event under the hashtag #JDRFGovDay

This is something new for me - but I'm ready to get my tweet on!  You can follow me on Twitter @PumpingPrincess!


Oh!  But YOU want to know who won, right!?!

Ok... here we go....

The FIVE lucky winners of the LFAC Sugar Bolus are.....

#44 - Sherry (jcarrier)

#20 - Kandice (Cherished Children)

#13 - Jennifer Colby

#31 - Lori Willey

and....

#3 Reyna

CONGRATULATIONS to all my winners! 

For those whose name was picked, go visit Once Upon a Sugartree and decide what you'd like!  You can choose necklace or keychain, personalization, color, beads, and more!  Email me (theprincessandthepump@gmail.com) your "order" within 48 hours or a new winner will be picked!

If you did NOT win - I'm sorry!  Better luck next time!  But you can still get a very cute necklace or keychain AND help out the Life for a Child program!  Go on over to Once Upon a Sugartree and order one for yourself!

Thanks for playing everyone!

Don't forget to keep in touch with me through Twitter and The Princess and The Pump Facebook page for updates about this weekends fun in DC!


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The Wish

Thursday, March 10, 2011

**If you are looking for the Sugar Bolus winner....Check back Friday evening!  I'll choose one after I get home from work! **

As you probably know, Sunday was Sweetpea's birthday!
She wanted to go to dinner at "the pizza place" with Mimi and Gaga.  After pizza, (and beating Gaga at air hockey) we went home for cupcakes and presents!

On Sunday, we celebrated with our family and friends.  Sweets would have invited every person that she had ever met before if I had let her!  And she tried - but I had to reign her in. 

She had a great time at her party!  It was a Cinderella party (to the dismay of the boys attending) complete with "pin the crown on Cinderella"!  D even behaved itself rather well! 



Her favorite thing was her cake!  (That's my girl!)

There is a bakery here that I adore... I ALWAYS get cake there.  But when we walked into Walmart the other night and Sweets saw THIS...



Game Over.  THAT was what she wanted. 

Of course, the Walmart closest to us did not have the kit.  So, after calling around to EVERY store in the area, I FINALLY found it (at a store that required my parents to put their lives in a bit of danger in order to pick it up!).  And she was one happy little girl!

The best part was her wish.

After everyone sang to her and she blew out her candles, we told her to make a wish.



She leaned in to me and whispered, "Know what I wished for?"

"What?" I said.

"I wished that we could be in Florida and that I could meet Cinderella and see her castle."

"That is a wonderful thing to wish for!" I said.

She wished for something that every five year old girl SHOULD wish for. 

She did NOT wish for a cure. 

And I'm glad. 

Let ME wish for the cure.  Let it be the wish I make every birthday, every time I toss a coin in a fountain, and every time I see a shooting star. 

My wish for HER is that she can be a "normal" little girl...

And on her birthday, her wish showed that she is just that!
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I Agree... Do You?

Wednesday, March 9, 2011

Don't forget....

You only have a few more hours left to enter the BIRTHDAY BOLUS!  Click HERE to enter to win your very own creation from Once Upon A Sugar Tree that also supports Life for a Child.  FIVE winners will be picked after the contest ends Friday at 12 am!



Speaking of Life for a Child and The International Diabetes Federation

The IDF site states that: 

There are currently over 300 million of people living with diabetes around the world. If nothing is done, this figure will rise to 500 million within a generation.
Diabetes is affecting us all. People with or at risk of diabetes, family members caring for someone with diabetes, a healthcare provider struggling with limited resources, an employer with concerns about employee wellness and health costs, a Minister of Health trying to balance competing demands with a limited budget or just an individual concerned about injustice and the future of mankind.

Essential care for all people with diabetes is one of the key areas to make a difference to diabetes to current and future generations.

In September 2011, there will be UN Summit on NCD's (Non Communicable Diseases - including cardiovascular disease, diabetes, cancer, and chronic repiratiory disease) at UN Headquarters in New York.  "The Summit will raise the profile of NCDs on the global stage, mobilize the international community to take action, secure the commitment of Heads of State to lead the cross-government effort necessary to reverse the epidemic, and send a clear message to donors and funders."

To read more about the IDF Call to Action, Click HERE and HERE.

How can YOU get involved?  It's easy...

1.  Share this information with your friends and family.  The link below will take you to the IDF site where you can post the petition to your facebook and twitter accounts.  You can also get a badge to display on your blog or site.

2.  Join the IDF community on Facebook and Twitter.

3.  Become an advocate for diabetes.  The IDF will have a toolkit available soon that you can download to get you started.

4.  Stay informed.  You can register to receive the IDF newsletter.

To find out more about how YOU can get involved, click HERE.

"With the right policies, commitment and investment, and relentless determination, we can and will make a difference to diabetes for present and future generations. This is a battle we cannot afford to lose. We must unite to take action NOW."

I AGREE!   Do you?





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It's Not You, It's Me: An Open Letter to My Friends

Monday, March 7, 2011

To My Dear Friends,

It's not you.... it's me. 



I know that sounds like a line.  And so often - it DOES mean "It's toally you".  But in the world of diabetes - where nothing is as it seems, where what's up is down, what's right is wrong, and what's left is right - it's often the things that make the least sense that are, in fact, the truth.

You see, when diabetes entered our lives, I didn't really get it.  I really thought that when we got home from the hospital that sooner or later we could pick up our life where we had dropped it a week earlier.  I thought, like everyone else, that we'd get her under control and things would go back to normal.

I mean, I knew it was going to take a little extra.  I just had no idea.

I kept waiting for when I could stop checking at night.  Waiting for the fear to go away.  Waiting for it to start making sense.  Waiting for diabetes to stop consuming my every thought.

It's been almost 2 years.  I'm still waiting.

At first, it seemed like it WAS back to normal.  Sort of.  It just hadn't hit me yet. 

In some ways, the more time we spend fighting this disease, the harder it becomes.

My grief didn't start right away.  Oh, I thought it did.  But I was wrong.  I'm still working through it.  Some days are better than others.

I know you wonder what's going on with me.  Why sometimes I'm so distant.  Why I don't return calls or emails like I used to.  Why I seem like the same person... just a little off.  Or maybe you wonder what happened to me?  Where I went?

I wonder, too.

It's just that sometimes it's SO HARD. 

Sometimes it's so hard to be around people who DON'T live with diabetes.  Sometimes it hurts to watch how easy the simplest things are for you.  Like feeding your kids.  Or having a date night.  Or getting together with friends.  Or.... well, you  name it.

Sometimes I feel like I speak a different language now.  One that no one else understands.

Sometimes it's just so difficult for us to do the easiest of things.  Excursions take planning and packing.  We can't be so spontaneous.  We have to consider so many things....

And sometimes I'm just so tired.

I don't mean to pull away from you. 

It's just....  I feel so very "high matience".  And that makes me feel guilty.  I feel guilty that it's hard for us all to get together because we have trouble finding a babysitter.  I feel guilty that you have to work around our schedule.  I don't like that....  Sometimes I think it's just easier for you to get together without me. 

And did I mention that I'm just so tired?

Sometimes I have nothing left to give.  At the end of the day, I'm done.  There is nothing left in the tank.  I have no energy left to talk or email or hang out or anything. 

But I know - It's been so long.  We used to get together all the time.  And now I can't remember the last time...  And that makes me feel guilty, too.

Sometimes I feel so empty.

Sometimes I hear you talk about your life... and it just feels so different from mine.  It didn't used to be.  It makes me wonder what happened to MY life.  But now it is so different.  And that's hard.  It hurts.  It stings.  I don't like feeling that way.

Sometimes I feel so alone.

And I don't want to be "that" person.  You know - the one that makes you feel like you have to walk on eggshells because you might say something wrong.  The one who makes you feel sad or uncomfortable.

So I try to hide it.  I laugh in the right places.  I smile.  I say I'm fine. 

But you KNOW me.  You know that sometimes I'm not fine.  And you know why... 

But neither of us knows what to do about it. 

Please don't give up on me.

What you do does not go unnoticed.  And I need you now more than ever before.  But sometimes I just can't express it to you. 

Thank You

Thank you for keeping after me.  Thank you for not letting me pull away.  Thank you for being there for me when I have trouble being there for you.  Thank you for not letting me fall off the radar.  Thank you for offering to help.  Thank you for caring.  Thank you for checking on us.  Thank you for being such a wonderful friend - even when I can't always return the favor.  Thank you for putting up with the glazed eyes and the unfocused attention and constant forgetting and the fact that I've been MIA so very often.

All I can offer is this... 

I'll keep fighting.  I'll keep swimming and I'll keep trying to find myself.  Maybe we won't get back to where we were... but maybe our new friendship will be that much better.

You - Just bear with me.  And PLEASE- don't take it personally. 

Because really -

It's not you.  It's me. 

But I'm working on it.



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Happy Birthday!

Sunday, March 6, 2011

Today, my baby turns five years old!

It seems like just yesterday....

 The song "How Great is Our God" by Chris Tomlin was playing the moment she entered this world....  It's #2 on the playlist...

 Ten perfect little piggies!

Two Months

Four Months

Nine Months

1 Year

17 Months

2 Years

3 Years

4 Years

Almost Five!

Sweetpea is SO EXCITED about this birthday!  She told me that when she's five, she'll be ready for college!

We were talking about her birthday the other night and I told her I wasn't sure if I could let her be five years old.  She wanted to know why.  I told her that five was awfully big and I I thought she should just be my baby!  She thought for a minute and said, "Mommy, I'll ALWAYS be your baby!  Even when I'm five."

She went on to tell me that she wanted to be older so she could make new friends.  And...  "Don't you want to make new friends, Mommy?  If I make new friends and they come to play then their Mommies will come with them and you can make new Mommy friends!"

Today we will celebrate our Sweetpea!  She is a special little girl!  So full of love and laughter and spunk!  

We've been through a lot in the past five years.  Sweetpea has been through a lot in her five short years of life.  She's the bravest person I know.  She lets nothing slow her down.  She's a fighter!

It has been a joy to be her Mom for the past five years (longer, actually!) and I look forward many, many, many more!

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