THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Showing posts with label jdrfcc2013. Show all posts
Showing posts with label jdrfcc2013. Show all posts

Saturday, July 20, 2013

2013 JDRF Children's Congress - Day 2 (AND YOU!)

Yes.

YOU.

Today is the day that YOU need to answer the call for help. YOU need to advocate with all your heart. YOU need to stand up and be heard.

But I'll get to that in a moment.

Day 2 began with breakfast followed by a Town Hall meeting with celebrities who are living with Type 1 Diabetes.

Photo by Camera1
Pictured Left to Right: Aaron Kowalski, Sam Talbot, Leslie Adkins, Charlie Kimball, Mary Mouser
Back: Brian Kenny
It was inspiring to hear their stories of triumph and success while living with Type 1 Diabetes. It was also validating to hear them talk openly about highs, lows, and the same frustrations we all deal with.

At one point, Mary Mouser was feeling low and needed to test while sitting up there. Coincidentally, Sugar came to find me at the same time...she was 70.

I did what any ordinarily awesome dMom does: I gave her a glucose tab, and then tweeted it:


After the Town Hall meeting and lunch, it was time to get down to business.

And this, my friend, is where YOU come in.

The delegates were divided into 4 groups to begin the blitz training sessions. Basically, we were learning what to expect during our congressional meetings the following day, and how to make the most of the limited time we would have.

Which means...

**WELCOME TO YOUR BLITZ TRAINING SESSION!!!**

You see, $150M (as in ONE HUNDRED FIFTY *MILLION* DOLLARS) of funding designated specifically for Type 1 Diabetes research is at stake, and YOUR voice can make a difference.

That $150M is called the Special Diabetes Program (SDP), and it's the reason for a wide variety of advances in what we now know about the T1D disease process, technology for management, and strategies for prevention. There have been a multitude of consortia and clinical trial networks, including the infamous TEDDY study and TrialNet, that receive funding from the SDP...and, if Congress does not renew the funding by the end of *this year*, ALL of it will come to a complete halt.

{Read more about the SDP.}

Here's a great infographic that talks about the burden of all types of diabetes on the United States. It's worth a few minutes of your time.  You might be surprised to learn that 1 in 3 children born in 2000 are expected to develop some type of diabetes in their lifetime.  ONE IN THREE!!!!  People!!!

WE. MUST. DO. SOMETHING.

But...what??

I'm glad you asked.

SCHEDULE A PROMISE MEETING WITH YOUR CONGRESSIONAL REPRESENTATIVES!

(Anyone can do this, by the way. Parents of children with diabetes, grandparents of children with diabetes, aunts and uncles, cousins, friends, neighbors, teachers...ANYONE who has been touched by someone living with T1D, and who wants to send the message to Congress to renew the SDP, can use their voice to advocate for it.)

What is a Promise Meeting?

You ask such great questions!


Established in 2000, JDRF’s Promise to Remember Me Campaign is all about building these relationships. Each campaign has been more successful than the last. During the 2013 campaign, we encourage people with type 1 diabetes (T1D) and their families to visit their lawmakers while they are at home.
JDRF volunteers and staff are here to help you set up meetings with your lawmakers, so that your story can make a difference in support and funding for programs that advance critical T1D research. Through the 2012 Promise Campaign, an amazing 457 meetings took place! This year, we want to touch them all, by completing 536 meetings—that’s one JDRF Promise meeting for every single Member of Congress! 

Step One - Sign up:

CLICK HERE to join the Promise Campaign.

There ya go. Easy peasy! Now someone will be in touch with you about getting a meeting scheduled with your lawmakers.

Step Two - Share it:

Prepare to share your story.

Think about what you want your lawmakers to know about living with Type 1 Diabetes. It might help to gather a few pictures to help guide the talking points you want to share. JDRF had us make a small scrapbook for Children's Congress, and it was very helpful in keeping the conversation on task to make the most of our time.

Step Three - Sell it:

Review THIS BROCHURE to gain additional insight into why the SDP renewal is so crucial, and gather some facts to share during your meeting.

During our meetings in Washington DC, we tried to focus on a couple key points instead of talking about everything at once:

1) T1D is an autoimmune disease that can affect every organ in the body. In addition to exploring autoimmunity in general, T1D research examines other medical issues such as blindness, kidney disease, heart disease, stroke, and neuropathy. Basically, you get more bang for your buck by supporting T1D funding.

2) The SDP funds $150M research dollars annually, and JDRF funds $110M.  In other words, JDRF nearly matches government funding dollar for dollar. This balance is the direct result of people who are working hard to push T1D research forward through through bake sales, car washes, walks, and other fundraising efforts. A Promise Meeting is more than a meeting between constituents and lawmakers...it is a meeting between partners.

3) In 2012, the annual cost of diabetes to the U.S. economy was $245 BILLION...and that number is expected to TRIPLE in the next 25 years. WE *MUST* finish what we've started in research, or face the consequence of impending doom.

So, there ya go.

Sign up.
Share it.
Sell it.

It's as easy as 1 - 2 - 3, and EVERY voice counts!

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Monday, July 8, 2013

14 Units.

That's how much insulin was left in her pump when I realized we were on the other side of the country without a vial to refill it.

Wait.

Let me back up for a second...

Last week, Sugar and I flew to DC for the 2013 session of JDRF Children's Congress (which, by the way, begins TODAY -- stay tuned!)  We arrived a few days early to spend time with my two younger brothers on the Delaware shore. I hadn't seen them since our move in 2006...suffice to say I was anxious to reconnect with them.

Sidenote: That cutie with the dark hair on the left is single.
Okay, he'll kill me for that, but I'm his big sister and this is my blog.
Also, I'm sure I will delete this once he sees it.
We had a wonderful time. As I write this post, I can honestly say that I truly understand why being "Aunt Wendy" to my brother's three children is such an awesome blessing. I fell head-over-heals in love with my niece and nephews. I don't think I can articulate in words the joy I experienced as I witnessed Sugar making memories with her cousins.


And who could forget Artie?

Because it's not a party without Artie!
But, alas, all good things must come to an end. We said our tearful good-byes, and my single brother drove us back to our old stomping ground, about 45 minutes south of Washington DC. 

Did I mention Artie?
We stopped to grab some lunch, and decided to have a little picnic under a tree so Artie could walk around a bit...and that's when reality came tumbling down.

I left all of Sugar's insulin in my other brother's 
refrigerator 3 hours away.

No biggie. We'll be surrounded by people who are also living with T1D in less than 24 hours. My pal Hallie is coming, and she'll bring a vial for us. I just know she will, because she gets it, and she's awesome like that.

Don't freak out, Wendy. Everything is fine.

FINE FINE FINE!!!!!

"Mom? I only have 14 units left."

Or so I thought.

Fourteen units wouldn't be enough to make it another 24 hours.

We needed to find some insulin ASAP...on a Sunday...far away from home.

We could do this.

We headed to the local Walgreens to see about an emergency refill. Which sounds like a perfect plan until they advise you that they don't have Apidra in stock. 

And neither did the next closest store.  Or the one after that.  Or any of the CVS stores, the Rite Aid stores, or the local Target.

I posted about our dilemma on Facebook, and the DOC sprung into action.  Offers from people who would drive as far as it would take to meet us half way, phone numbers from strangers offering to help, a million messages of love and support, calls for help on other status updates, twitter cries for insulin...

Suddenly I didn't feel so alone and so far away from home.

We found what seemed like the only 2 vials of Apidra within a 75 mile radius, so we hightailed it up there.

But they were closed for lunch.

By this time, poor Artie was struggling in the heat, not to mention that he recently had a knee reconstruction and his leg was bothering him after several hours in the car.  I had no idea how long he would end up sitting in the parking lot waiting, so I called an old friend who said she'd come pick us up and hopped in her car without a second thought.  

(Sidenote: THANK YOU, JACKIE AND BRENDAN!!!!)

Another tearful good-bye, luggage moved to her car, and inside Target we went...

"Mom...I'm low."

47.

Could this catastrophe get any worse?

Well, I mean aside from the fact that my phone battery showed less than 20% by this time.

The pharmacy reopened, and I handed over her insurance card...

"This card is expired, Ma'am."

Apparently I never put our new cards in my wallet.

Awesome.

But it worked out, and an hour later, we walked out with 2 fresh vials of insulin.

CAN I GET A HALLELUJAH?!?!?!?!?!?!?

And the people said AMEN!

We're in DC now with a pump full of insulin, and ready to get Children's Congress started!

Stay up to date by joining me on Facebook, Twitter, and Instagram.  You can also follow #JDRFcc13 on Twitter.  There are a few opportunities to watch the events LIVE via the JDRF Advocacy YouTube Channel and you can catch a special committee hearing on Wednesday, 7/10, at 2 pm.


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Tuesday, July 2, 2013

Media Blitz

She's an ordinary girl.

Go ahead. Ask her.

She'll rattle off a list of ordinary things she likes to do...and today's list may not be the same as tomorrow's list.  She's a free spirit in that way -- each day holds it's own joy.

When the press releases started flying about her selection as a delegate for the 2013 session of JDRF Children's Congress, she wasn't sure what to do with the energy.

"People want me to tell them about my diabetes?" she asked, tilting her head. In her world, pricking her fingertips, counting carbs, and wearing an insulin pump is ordinary.

"Well...they really want to hear more about Children's Congress, and talking about your diabetes is part of the story." I replied.

"Oh. Well, okay. I guess that makes sense, then."

Here's the Fox10 segment she did... You'll find her News Channel 12 interview here, and the 3TV spot here.

(FYI -- I will embed those videos if/when I find a code.)

This time next week, Children's Congress will be in full swing.  You can stay up-to-date by following hashtag #JDRFcc2013 on twitter, or keeping up with all the fun on Facebook.  Be sure to follow the JDRF Advocacy page!



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Wednesday, February 6, 2013

She Tried.

When I was an ER nurse many moons ago, there were two girls who came in all. the. time.  "Frequent Fliers", as we would call them.  In addition to "diabetes" (plus a host of other miscellaneous diagnoses), they both had End Stage Renal Disease (ESRD), and their blood pressures were NEVER less than 200/100.  

They were both in their early 20's.  They were rude, impatient, demanding, and...well...MEAN. And, by "mean" I don't mean mean.  I mean name-calling, cussing, throwing-emesis-basins-at-you,  downright M E A N.

I swear if one wasn't there, the other one was.  The only thing worse than having the charge nurse assign one of them to your team, was being assigned both of them.

After a few years in that ER, I took a position in the PACU (aka "Recovery Room"), and must admit that part of me was happy knowing I wouldn't have to deal with them any longer.

Or so I thought.

Turns out dialysis shunts require revisions more often than I realized.  Shunts are revised in the OR under anesthesia...which means these patients need to be recovered from anesthesia...which means...

Yup.

I could run, but I couldn't hide.

And you know what else?

Their surgeries were usually "add ons".  Meaning, more often than not, they were added on at the end of the day, after the scheduled procedures were finished.

I *ALWAYS* worked evening shifts.

So, unlike the ER, when there was a chance that they'd come in earlier or later than the time I was working...in the PACU, I was pretty much guaranteed to see one or both of them ALL. OF. THE. TIME.

Dammit!  Why didn't they take care of themselves?  Huh?  Have a flippin' vegetable.  Stop skipping your insulin. Exercise a little. And lighten up on all that salt you must be adding to everything you put in your mouth, because your blood pressure is out of control.  Quit getting yourself into these quandaries, leaving you no choice but to come here...AGAIN.  Have a little self respect.  Do better for yourself.

And get out of my life.  

These are things that jumbled my mind as soon as I saw one (or both) of their names added to the schedule.

One day I was behind the curtain helping one of them with something.  I was frustrated.  I was tired...and I'm sure it showed.

Then I felt her hand brush against mine.

Not in a M E A N way.

More like a soft nudge.  A call for attention in the midst of her drowsy state of mind.

"My mom couldn't figure it out, and my dad wasn't ever around."

Really???  Do we have to talk right now?  I just want to get out of here before you decide to start throwing something at me.

"My diabetes.  She just couldn't figure it out and I tried as best as I could, but I was just a little kid.  She had lots of boyfriends and I have all these brothers and sisters and stuff, but I don't really know where everyone is.  Some of them are in jail.  Some of them went to foster homes. She couldn't really take care of herself, and it was hard trying to take care of me.  I went to a foster home a couple times, but no one ever kept me for long because it was hard to deal with the sugars.  When the other kids were gone, they gave me back to my mom. I dropped out of school when I was 16.  Just like she did when she got pregnant with me."

I felt a lump in my throat.

"I'm not going to live much longer.  The doctors told me that already.  I just wanted to tell someone that I tried, but when I was old enough to understand it better my kidneys were already failing. You medical people are the only people I ever see.  I don't really have anyone else to talk to."

She was right.  She didn't live much longer.  I think I might have seen her once or twice after that.

That conversation happened 11 or 12 years ago.

Fast forward a few years, and my daughter was diagnosed with Type 1 Diabetes.

I had no idea.

I was shocked when I figured out the amount of effort, time, and brainpower it was going to take to keep her alive.  Vegetables, reducing sodium, more exercise, self-respect...while they're all fine and dandy, THEY WON'T MAKE THE PROBLEM GO AWAY.

Over the years, I've thought about that patient of mine from long ago.

She taught me a lesson, and I had no idea just how close to home her lesson would hit.  What if her mom had a community of support?  What if SHE had a community of support?

What if a million things.

What would she have become?  What could she have become?

What has the world lost, because she didn't have a chance?

So...WORLD??  Are you there?

She tried.  She tried her best.

And, to my patient...

Maybe your family hardly remembers you.

But I do.

Thank you for sharing your heart with me.

I will take your message to the top.  I will tell them.  And I will do whatever I can to make sure another child doesn't succumb the same fate.

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Tuesday, February 5, 2013

You've Got Mail!

She was 480 this morning.

I mean...not this morning when she woke up. She was 480 at school, before PE.

I was in my PJ's, contemplating a bowl of oatmeal for breakfast while pondering dinner. I worked last night, have some emails to return, and an Animas post to write...basically I was just getting my day figured out when the phone rang.

Throw on jeans, tuck hair behind ears, add a little blush and a dab of lip gloss...I'm seriously getting to old to make myself look "spontaneously fresh" first thing in the morning. Anyway, I just got home from changing her site and filling her pump up with new insulin.

And I'm reminded, once again, that insulin is NOT a cure.

But back to the mailbox...

We applied -- for the FOURTH time -- to attend the 2013 JDRF Children's Congress this summer. Okay, technically she was a few measly days shy of the 4-year-old age requirement when we applied in 2007, but whatever.  

2007 -- "Thank you for applying."
2009 -- "Thank you for applying."
2011 -- "Thank you for applying."

Which brings us to 2013.

I debated applying over and over in my mind. One day, I was gung-ho, and the next I wondered if it would be better to put it off another couple years. It's been harder to deal with rejection with each passing year, and I honestly just wasn't sure if either of us were up for it right now. I wavered long enough that I was left with three days to make a final decision.

Then Hurricane Sandy hit, forcing JDRF to change the deadline.

Which, basically, gave me more time to oscillate as I watched the horrible after effects of Sandy unfold in the media, while trying to escape the political climate of the 2012 Presidential Election.

Before I knew it, the deadline extension was looming, and I couldn't stagger any longer.

Either apply or don't, Wendy.  That's all there is to it.

Period.

So...we sat down together and drafted a letter.  We talked about the election and the types of powerful decisions that are made in Washington DC.  We talked about where insulin technology has been and where it's going.  We talked about the relationship between Celiac and Type 1 Diabetes.  Then we filed our application, and agreed that, no matter what, we'll keep our heads held high.

The automated email reply said we should hear confirmation by "early January 2013".

January came...and January went.

Almost.

One day late last week, I sent an email inquiring about the notification letters.  The reply informed me that our letter was being mailed soon, mentioned something about the possibility of a phone call, and apologized that more information couldn't be provided.

A call?

That's curious.

Then I read this post by Moira after it popped up on my FB newsfeed yesterday.

The letters were really on their way.

I happened to be outside when the mailman arrived.  I walked over to see if he had filled our mailbox, and that's when I saw the blue letter return address peeking out from beneath a circular of store ads.  He handed me our mail, and I picked it out immediately.

It was heavier than a single sheet of paper.

I held it up to the light.

Something was different.

I'm very familiar with the JDRF logo, and could tell something about the logo on one of the pages was different.


I handed our pile of mail back to the mailman, and told him my husband would collect it when he got home from work.

He stared at me like I was nuts, but I wanted Mr. Rose to check it out to see what he thought before sitting her down to open it...


PS  (She'll always be "Sugar" here...even though you know her real name now!)

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.