Monday, December 29, 2014

A Look Back and A Look Ahead

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Another year is quickly shuttering.  As I peek into the 2015 window full of exhilarating, wonderful and exciting possibilities, I can't help but to reflect on where we are TODAY. 

That is, after all, one of my biggest life lessons since T1d came into our lives; Live in the now.  

This is a biggie.  The kind of lesson that if you are like me, you learn when you are thrust into a life-changing, permanently altered universe.  This is the realization that all too often 'now' is gone before you even get a moment to blink.  

Today, my 'now' is this; the Naturally Sweet Sisters are growing up in leaps and bounds.  Not just in the realization that they are both almost my height and shoe size, but I am reminded by that as my phone and Facebook is suddenly full of pictures of only youngest daughter.  Her sister, a teenager, is often without me and doing all of those glorious things that wonderfully independent teens do.  I am thankful too.  I wished for this when she was first diagnosed.  Even saying a small prayer in hopes that her life would be just as it would have regardless of T1d.  As we continue through each year, I see this wish coming true, over and over.  Even if it is hard on my motherly heart, I am forever grateful for this.

I appreciate my stolen moments while I check oldest daughter's blood sugar as she sleeps, whispering 'I love you' and hearing as she sleep-talks into saying, "I love you too".  I love hearing her as she asks my advice on how to handle a situation or if her outfit is alright.  She makes my heart soar with pride and at the exact same time, has taught me that I still need to grow a bit more in order to learn of how to cope with those teenaged mood swings.  After all, as all of my friends gleefully point out, I have TWO girls headed into deep growing years.  I have to learn to cope.

At this moment, I have been given another gift of spending a little alone time with her younger sister.  We have declared our upcoming year, the "Year of Adventure" and together, youngest daughter loves planning fun day trips with mom, dad and sister (when she is not busy) to museums, shows or even just long walks around our town.  She tells me everything and I savor her words as they are filled with joy and happiness that only eleven years can bring.  Every moment is truly an adventure.

Which brings me to the realization that I have learned to let go a bit more.  Mostly of the mad hold that I had on T1d care.  I loosened the reins and I made decisions to help the girls learn through their own triumphs and failures.  College is now part of our lexicon and I realize that I have a little more than four years before that becomes a reality.  In a way, achieving their independence has become a long-term goal of my parenting.  I know they will need to make critical decisions and understand the ins and outs of daily care from supply ordering to pump settings changes and a million carb-insulin-activity-induced decisions in-between.  

At this exact moment, I know that I am not the person that I was eight years ago.  I have changed.  I have grown more into the person that I needed to be, but also the person that I wanted to be.  Ironically, T1d gave me both heartbreak and strength.  I also recognize with giddy anticipation that there is more yet to be accomplished.  While the girls may need me less that has offered the possibilities of finding personal fulfillment.  I traveled without the family, spoke passionately to others about my personal platform of improving patient/family care and met many other deeply committed shareholders both with and without T1D.  Like peeling layers of an onion, there is so much more than 'mother' in my circle of reference.  I am feeling it for the first time.

And with that, I welcome 2015.  

Tuesday, December 23, 2014

Teaching Daughters and Security Guards

Last night, a dear friend gifted us a four-pack of tickets to see a local basketball game.  Without hesitation, our family accepted with grateful hearts because for the first time in many weeks, we could go without having to hurry back for school projects, work deadlines or any of the other million of things that constantly consume our daily lives.  The gift wasn't just about a basketball game, but more about the opportunity to do something fun while relaxing together.

Once we arrived, oldest daughter and the Naturally Sweet dad, raced ahead with their longer legs to enter in through security and ticket scanning.  They had their tickets and youngest daughter and I had our own set safely tucked into our pockets.

However, once in the security line, things rapidly slowed as three of us carry purses.  Mine was simple enough with a quick scan, but our daughters had to pause to pull out their test kits and open those to show what was inside.  Youngest daughter and I made a few jokes as that extra time allowed us to catch back up with the long-legged crew.

Moving through the line past security and suddenly, another security officer reached over and stopped my husband.  Pointing at his outer coat pocket, he motioned for the Naturally Sweet dad to take out his water bottle and toss it into a big bin marked for prohibited stadium items.  The Naturally Sweet dad, a true follower of all rules, turned to our oldest daughter and motioned for her to do the same.

Catching all of this as I looked ahead, I hurried through the line and started to yell, "NO!  Wait!  That water is for our daughters.  They are allowed to bring that in for their medical condition."

Oldest daughter looked at me and I could tell that she wished for nothing more than for her mother to stop talking and possibly wither away.  (And maybe I should have because we do have the luxury of being able to afford buying another beverage within the stadium.)  However, I just couldn't.  This was suddenly a teaching moment.

Instead, I calmly but forcefully explained section 504 of the ADA to the security guard and then, to the two others that came to make sure that we were not causing too much trouble.

In a matter of minutes, both water bottles were properly returned to our family and we were allowed in without further hesitation.  Oldest daughter seemingly forgot her embarrassment at mom and was back to giggling and joking with the rest of the family.

After we took our seats and were casually watching the warm-up to the game, oldest daughter leaned over to me with a conspiratorial wink and said, "That was pretty cool, mom."

I smiled back and said, "Thank you.  I am glad you are having fun."

"Not that, mom... The security guard.  You really knew your stuff."  She smiled again and suddenly seemed proud that I was able to represent our family.

We then talked a bit about her future and how diabetes tended to make events tricky.  I admitted that I also didn't like to have to stand up for our rights and that I wished (must like anyone else) that we could just sail through without having to say anything.  I also explained that one day, I knew that oldest daughter would be without me and that one bottle of water might be the only access that she would have during her time away from home.  What if her blood sugar was struggling that day, causing dehydration or ketones?  If she let the first 'no' stop her, the situation could quickly escalate to needing emergency services or worse.

While the basketball game will most likely be forgotten in the grand scheme of life, I am sure that the security guard incident (as we know call it), will be remembered for many years to come.

Monday, December 15, 2014

December Diaversary x2

For three years, I didn't understand how much you were absorbing of what was going on after your sister's diagnosis of type 1 diabetes.  I was caught up in making your magical childhood happen just has it has always done, with the exception of an extra poke, dr.visit or pump start.  I wanted to make sure your kindergarten year was every bit of the joy that we had intended it to be.  Thankfully, your lovely teacher never batted an eye as I sent you off during some of the harder moments dressed in the frilliest of tu-tus in hopes of lessening the difficulty that T1D had brought into our home.  I knew you were happy and loved,  those were the biggest gifts that I could give during those early years.

However, you were always there, quietly watching and observing what your little sister was doing.   In hindsight it was no surprise that you instantly recognized what your little body was telling you five years ago.  There were drawings made by you at age 5 of your sister with blood droplets surrounding her and pictures created by your 6 year-old child-hand captioning the very worried phrase 'DIE'-betes.  As you continued to grow through 6, 7 and 8, there were play-acting games with stuffed animals that needed juice or shots right away.   There was even a special collection of your own stickers from the hospital that you treasured, while asking when it would be your turn to go have a visit. Such a premonition that neither of us realized.

Poking your finger on that cold, winters day broke me into a million tiny pieces.  I hadn't thought it would happen to you too.   Realistically, I knew the possibility was always there, but I didn't want to admit it to either of us.

I remember calling and frantically looking for options to stop what was happening.  Anyone with a connection to promising research was called and for the first time, I didn't even care if I sounded crazy.  I would have done anything to change the direction that was headed our way.  Coming to terms with the inevitable answer of 'there is nothing we can do' was perhaps the hardest realization that I have ever faced in my life.

While your sister's diagnosed changed me, yours did too, perhaps even more.  It made me have a steely resolve to continue to work wherever I could to advocate for better treatments, equal health rights and most of all, for a cure.

Even better, is knowing that roles have somewhat reversed for the two of us.  I now sit quietly watching you, listening as you tell me about a kindness that you bestowed on a classmate in need and of how you tried to help a fellow friend with T1d, handle a bothersome situation.  I watch you hug your sister after you give her an injection in a hard-to-reach area and while you comfort her like a mama would with kisses on the top of her forehead.  I see you step out of your comfort zone to lead at school and to encourage others.  I watch you day-dreaming into the future, when you are done with school and have become a pediatric endocrinologist and in your own words, "helping kids the way they need to be helped."

Five years ago, life handed you the very big task of living life with type 1 diabetes.  I am so proud of how you have accepted it, managed it and continued to thrive with it.  You make me proud every day, sweet girl.  I have no doubt that your gift to the world is the ability to show this special strength and to encourage others to follow your grace and kindess.

I can't wait to see even more of what you choose to do in this world and I have a feeling, there are a lot of people cheering you on. xoxo

Thursday, December 11, 2014


This a posted sentiment that I wrote on my facebook but somehow, it felt like the only one that I wanted to write.  Diaversaries are like that... whatever works for whenever you need it.  

This is what I needed to say today.  My heart is full of 8 years of learning through love.  I need to thank her for being the strong person that has led the way for me and all around her.  She has made me a better person.  

"Today, exactly 8 years ago, our just-turned 3 year old, little girl was rushed to the hospital with a blood sugar of over 800 mg/dl and with an A1c of 13.7. After a week long stay at our local children's hospital and endless learning curve; today, she has proven that Type 1 Diabetes and Hashimoto, both autoimmune diseases of no known origin and with out a cure, will NEVER stop her from the love of learning, feeling the freedom of belly laughs and accomplishing anything her heart sets out to do. Such a priviledge to be taught so many wonderful lessons through her determination to succeed, joy at all that life offers and best of all, endless HOPE for a CURE. I am proud of you, youngest daughter. You have taught many and continue to do so. The world is better because of YOU!"

Monday, December 8, 2014

Sit With Me Until I Am Safe

Last night was a doozy.

Blood sugar fighting with some mad jabs throughout the day and landing a final low blow squarely on youngest daughter.

It wasn't the normal, well normal-'ish' because what is normal about a low blood sugar??, kind of low.  This one was fierce and seemed to hang on into infinity and beyond.

This low also had to happen right at bedtime.

After teeth were brushed.

Beds were tucked.

And on a Sunday night.


At the exact same time the final low blow happened, I found myself caught up in night-before-school-resumes mayhem and slightly irritated that T1D was interferring with what needed to be done around the house before Monday morning arrived.  I was more than a little upset at myself for slacking off over the weekend and not working harder to avoid the pile up of school stuff, lunches and laundry.

Once the low blood sugar was discovered thanks to the shrill squeal of her CGM alarm, and after I knew our youngest daughter had treated it with some juice and a few tabs for good measure, I started to mentally tick off the mountainous to-do list that required my immediate attention.  Antsy and impatient, I headed back to the hallway.

However, this night was different.  As I was about to leave her room and ready to explain that "I would be right back but had to do some mommy stuff", a little voice called out.

"Sit with me until I am safe."

For a second time that night, T1D pounded another fist of pain.  This time to me with the realization that I had forgotten how hard and scary it can be to recover from a low blood sugar, especially for a little girl.

My eyes instantly teared up and all other thoughts of to-do lists floated right out of my mind.  I could only think of her innocent words that expressed the only important thing in this world... which packaged as safety, was really more about family love.

So I sat with her; snuggling, cuddling, kissing and holding her tight.  I waited until the in-range CGM resumed and waited even longer, until well after her eyes grew heavy as she once-again relaxed.

I continued to stay for a long while later, watching as she slumbered and promising that I will never forget that powerful reminder.

Wednesday, December 3, 2014

Pokes - Yes, they still hurt

I was gently asked by a good friend 'if the infusion site change hurt?'.

It was not an offensive question, but more of a hopeful one, as I could tell that the answer she wanted was for me to say, "No.".

But that isn't the case.

Infusion site changes, continuous glucose monitor  (CGMS) insertions, finger sticks, needle and syringe injections, are each inserted with a sharp, stainless steel needle through a top layer of soft skin tissue.  Pain levels vary depending on the amount of nerves, scarring, fat and even the degree to which blood sugar is in-range during the procedure.  Higher blood sugars are often prone to a higher degree of pain, which is also a big indicator for the need to change an infusion or CGM site.  Certain areas such as pads of fingertips or muscle filled arms and legs, tend to cause more pain as well.

There is often more pain when a child is already feeling down, sick or frustrated.  All parents will understand the phenomenon of taking kids to the pediatrician and explaining ahead of time that there will be a shot given at the end of the appointment.  Some children anticipate the future pain and work into a frenzy of anxiety, making the procedure even more painful.  I equate that type of hyper-sensitivity to being at the dentist.  No matter how hard I try, I still fixate on the teeniest moments of pain and find myself reacting intensely.  I can stub my toe, have it hurt like heck and manage that moment better than the injections given in the dentist chair.

Pain management is difficult to explain to a child.  When our youngest was three, her entire world turned upside down and suddenly, she was being poked by people she loved at every turn.  From IV lines for her severe dehyrdation to hourly finger sticks and multiple daily insulin injections, needles were coming at her from every direction.  It was not any easier for our oldest daughter at age 8 to suddenly have the same series of injections.  Suddenly she flipped from supporter of her sister to needing support from her sister.  Our oldest may have been better able to communicate her pain and sadness, but it hurt every bit as much as it did for her crying and confused baby sister.

Pain tends to be worse at night, before bed, when a child is already worn out from a long day of managing their disease and asked to have one more poke.  Conversely, first thing in the morning can be just as hard as a child has to take a poke before he/she can eat or before they head to school, with the expectation that they will be able to get over it.

Pain never quite fully subsides, even with a chronic disease that many believe we should be 'used to it'.  Within the medical community, where many are desensitized of needle pokes, our family has listened to techs, nurses and even the odd pediatric endocrinologist make a comment that a flu shot or a blood draw should be 'no big deal'.

Other parents have used my family as a guide for dealing with their own set of pokes and resulting pain.  Without wanting, we have become a poster-family for getting through annual pediatric shots.  This is hard to hear as I carefully explain to other parents that no matter how brave a child may seem, a poke is still a poke and has the right to compassion.

Let me emphasize the fact that pain is real.  Pain is not imagined or exaggerated.  Pain takes many forms from depression to anger caused from managing a chronic, life-threatening condition such as Type 1 Diabetes.

The awareness of that thought is important as it may bring about a greater feeling of compassion or sympathy from people that are not living with chronic conditions, for all children (and adults) that do.

While we have no choice but to live with the pain, it is nice to have some kind people acknowledging the need for a kiss or a hug to make it better.  This should not be confused with pity.  Even a simple smile would provide greater support to a person living with a chronic illness than a poorly spoken 'should be used to it' comment.

The question that started our conversation was helpful.

Today, I now know that one more person is going to offer a little more kindness and compassion to all of the people that live with Type 1 Diabetes.

Feel free to share to your community as well.  Together, we can make a difference.

Tuesday, December 2, 2014

Feel Beautiful Today

Somehow, we managed to hit the teacher jackpot this year.  Both of the girls are surrounded by strong, smart and wonderful adults that are fully committed to shepherding them through a year of love and learning.

It really doesn't get any better than this which is underscored by this example:

               In one of our oldest daughter's classes, a teacher stepped out from behind the proverbially desk (modern times - no desks and only smart boards/laptops) to impart some brilliant wisdom that can only come from having life experience as a long-ago teenager.

As she scanned the room of reticent young faces, instead of keeping her thoughts inward, the teacher decided that she needed to share a critical point.

My daughter, always quietly listening and watching, devoured the words immediately.  Simple as it was, the impact from a beloved teacher was immediate.  I noticed as she re-told the story to me, her stance was taller, straighter and more empowered.

This is the kind of gift that only the best of teachers can provide.  Even if mom said it a thousand times before, the message never had an impact like it did today.

What was it, you ask?  Here you go (and while paraphrased by oldest daughter, this is the basic concept).

"Girls and boys: You may not be feeling very good about the way you look or maybe you are feeling negative about 8th grade.  However, I want you to know that when I look at you, I see only how beautiful you are.  I want you to know that when I look back on the pictures that I had as a teenager, even though I didn't feel that way then, I now see how good I did look.  I think, "Damn!  I was gorgeous!".  Yes, I know I just said a bad word but I want you to know how serious I am.  Each of you are beautiful and lovely and smart and talented.  Enjoy these gifts now.  Don't wait to look back on some old pictures. Believe in yourself today because I do."

Thank you, Ms. H.!

From a mom of a teen aged daughter and her 'almost' teen aged sister

Thursday, November 27, 2014

Happy Thanksgiving! And another view of Thanksgiving Carbohyrdate Counts.

Happy Thanksgiving!

We are hosting this year and apart from the many hours of cleaning, cooking and baking, we are all very excited to have family from out of town coming in to share a meal and make a few memories.

Here is an oldie from 2012 but a good reminder of Thanksgiving Carb Counts.

CLICK HERE or Copy and Paste this link into your browser.

From our Naturally Sweet Family to Yours...

May you have a wonderful day, surrounded by family and friends.  

The Naturally Sweet Sisters

Monday, November 17, 2014

More from #MakeHealth, A Share from DiabetesMine.Com and guest blogger Susannah Fox

Susannah Fox

Sharing another perspective from the T1D Imagining Better Outcomes Conference through #C3N and #MakeHealth.  This was the fabulous event that I attended last week in Cincinnatti, OH.

The article, written by the fabulous Susannah Fox, is a neat perspective from one that does not live with T1D but has a deep desire to help streamline the current healthcare process.

And imagine this... she was one of almost 50 other attendees that has jumped into the idea of tackling this HUGE process and implementing positive change for all PWD's.

What's wonderful about her style is that fact that not only did she politely listen as I rambled on about the day-to-day life of parenting two kids that live with T1D, but she actually dove head first into my story, took notes and offered helpful insight on ways to start the much needed change process.

When we left the conference, I offered her a big hug and thanked her for her time.  What did she do?  Turned around and thanked me for sharing a glimpse into our life.  Then she faithfully promised to continue to work on the solution long after the meeting was completed.

Since then, she has made good on her committment and through tweets @SusannahFox, her blog at, and now, her informative guest post at HERE.

If you get a chance, stop by and say hello to her.

Also, as the process continues, we are encouraging all PWDs to join the movement for #MakeHealth through Twitter @natsweetsisters.  Tweet about what you would like to see improved through your life with T1D.  This is OUR opportunity to make the system better.

Together, we can.

You can visit my previous post #MakeHealth, #C3N NaturallySweetSisters blog post HERE.

Naturally Sweet Sisters Blog Posts for November is National Diabetes Awareness Month 2014

Day 1
Day 2
Day 3
Day 4
Day 5
Day 6
Day 7
Day 8 #MakeHealth See us on Twitter @natsweetsisters
Day 9 #MakeHealth  See us on Twitter @natsweetsisters
Day 10 #MakeHealth See us on Twitter @natsweetsisters
Day 11 #MakeHealth See us on Twitter @natsweetsisters
Day 13 #MakeHealth See us on Twitter @natsweetsisters
Day 14 #MakeHealth See us on Twitter @natsweetsisters
Day 15 #MakeHealth See us on Twitter @natsweetsisters
Day 16

Sunday, November 16, 2014

Bouncing with the Diabetes Monster

This morning our family, along with about fifty other families living with T1D,  met up at a cool place called SkyZone for an event sponsored by a local T1D Awareness group called Diabetes Youth Services (DYS), out of Toledo, Ohio.  

DYS is a wonderful group that provides families with networking opportunities, day camp and even advocacy.  The group loves nothing more than to get out into the community and incorporate fun ideas that bring families together and lessen the T1D blahs.  Hence, choosing SkyZone, which is an interactive trampoline fun center for kids 3-99 years old.  

Happily we met the criteria!  

Upon entering, we did the usual three point bullet list of questions.  

1.) Do we have a safe place to store our T1D gear?
2.) Did we check our BG?
3.) Do we have enough sugar?

Because ultimately, that list of questions will resurface.  

"Mom!  Where is my stuff?  I feel low.  I need to check my BG RIGHT NOW!!!!"

Although today, when the questions surfaced, it wasn't as unusual.  All of the families were dealing with the same issues.  

Around me I could hear (and sometimes just see), the conversations that indicated a need for something urgent that could only be explained by T1D.  

Meters, snacks, kids quietly waiting... all things that happen within our world.  

And yes, there were many that continued on without a single (obvious anyway) pause to their happy bouncing.  

Because no matter how wonderful it is to being doing something fun as a family, the reality is that the Diabetes Monster comes along too.   It may not show up in the moment or it may but ultimately, it is there and just waiting for a time to rear up.  

That's what T1D does.  It lurks.  

The three questions should probably be more along these lines because none of this is something that we asked to do:

1.)  Did we tell the Diabetes Monster not to take, hide, lose or destroy our stuff?
2.)  Did we feed the Diabetes Monster or do we need to feed him soon?
3.)  Did the Diabetes Monster have a blood sugar temper tantrum and do we need to give him a bit of glucose?

Until there is a cure, there is a need for change and a swift kick to the ever troublesome Diabetes Monster.  Or a restraining order.  I'd be good with that too.

Remind your friends and family that while World Diabetes Day is gone, November is National Diabetes Awareness month and it is only about halfway over.  And even more importantly, nothing has changed since we started this 28-day cycle.  We still are in need of change.

Ask the people around you this:

What can you do to help continue to shed the light on the need for better treatments, faster technology and ultimately, a cure for T1D?   

What can you do to give a swift kick to Diabetes Monster?

Naturally Sweet Sisters Blog Posts for November is National Diabetes Awareness Month 2014

Day 1
Day 2
Day 3
Day 4
Day 5
Day 6
Day 7
Day 8 #MakeHealth See us on Twitter @natsweetsisters
Day 9 #MakeHealth  See us on Twitter @natsweetsisters
Day 10 #MakeHealth See us on Twitter @natsweetsisters
Day 11 #MakeHealth See us on Twitter @natsweetsisters
Day 13 #MakeHealth See us on Twitter @natsweetsisters
Day 14 #MakeHealth See us on Twitter @natsweetsisters
Day 15 #MakeHealth See us on Twitter @natsweetsisters

#diabetesmonster #CureT1D #natsweetsisters #jdrfcc15 #jdrf #not1d, #C3n #makehealth

Wednesday, November 12, 2014

A Prescription for Design #MakeHealth

HealthDesignByUsC3N Project

It has been a whirlwind past few days.  

Somehow, I was lucky enough to be included with a group of remarkable Brainiacs - and I say this with great admiration as the list of credentials include Brown, MIT, Stanford, GLU, T1DExchange, TidePool, University of Cincinnati, University of Michigan and many more- that are vowing to change the change the way we view clinical care for families, providers (doctors, nurses, techs) and systems (research, data collections and data execution).  

It all happened because of this wonderful doctor,
Joyce Lee: Medicine, Public Health
Dr. Joyce Lee, Doctor as Designer @joyclee

and her collaborative vision of:


A real and virtual community passionate about health and design

and another innovative doctor, 

A photo of Peter Margolis.
Dr. Peter Margolis, MD, PHD Co-Director, Center for Health Care Quality 

whom worked on ImproveCareNow with two major projects of improving health care for patients with Inflammatory Bowel Disease/Chrohn's and Cystic Fibrosis.  

This kind of health network means we all work together – care providers, researchers, patients and families – using scientific data to drive improvements for kids with Crohn’s disease and ulcerative colitis. We analyze results from thousands of doctor/patient visits and review the latest studies and treatments worldwide. As we all share this information, we continue to improve care for all patients.

As the project idea started to slowly form, another key to unlocking the need for change was the needed resources procured by Dana Ball, founder of the T1DExchange.  

 Dana Ball
Executive Director and Co-founder T1D Exchange, CEO, Unitio
Dana has worked as a 30-year veteran patient advocate for T1D as well as serving with the Helmsley Charitable Trust for T1D and establishing the T1D Exchange and (if you haven't signed up, please do so.).  The T1D Exchange is a system used to connect shareholders within the T1D Community such as patients, providers, caregivers, clinicians, researchers and medical corporations.  GLU is used as a way to obtain data to share to the above in hopes of improving care and fulfilling needs - throughout the T1D landscape.  It is big and it is full of the information that can make our system design improved.  

And the list went on and on of amazing attendees.  I met patients, doctors, CDEs, researchers, data analysts, systems designers, doctors, patient advocats, and so many more.  Most notably in our own familiar T1D world, a few favorite celebrities of the Diabetes Online Community (DOC) bloggers Kerri Sparling, T1D adult from, whom just wrote the book Balancing Diabetes and Bennett Dunlap, parent of four, two with T1D from and the wonderful story teller of Smash Your Meter.

Entering the conference room on that first day was full of 'WOW'.  Clearly, this was a group that was assembled to get things moving.

So why was I there?  Yes, if you are thinking this, well, so was I!

It wasn't completely clear until we started off our first session with a 'Design Prescription', which might be the most exciting take-away of the event.... 

I was there because the assembled T1D Designers wanted to know even more about the families at the core of the project and they wanted to learn first hand from all of us! 

Pause and let that sink in, people!  We are being heard!!!!!!!

As a side note, you can be heard too... scroll to the bottom and pick up the hashtag to keep the conversation going on Twitter.

Patients/Families were instructed on the understanding that we were the T1d Experts while the Design Team - all the marvelous others in the room - were to listen, have empathy and start the journey of learning through what it is like in 'our' patient world of T1D. 

Together, our group of 50ish (plus or minus a few) team members quickly jumped into the first task of understanding our most critical need as patients/families living with T1d.

Well, as you all know, that would be living with T1d.  Right?!

That pretty much sums it up.  We want a freaking cure!  Sigh.  

Breathing deeply right now, because no matter how many times it is discussed, I still want to move this train onto those cure tracks.... which might be fun as we could drive it over the diabetes monster!  

Since clearly, we are still living with T1d, as patients and families, we have to work with what we have NOW.

Just as I was bravely to voice what I wanted to my table of intellects, it suddenly occurred to me by observing the faces around me, that most all had no idea of what we went through to actually get to the point of ranting about a cure or driving a train off the tracks.  

Before addressing what I wanted, it seemed only appropriate to explain why I wanted it.  

Naturally Sweet Sisters
The number reason I want a #CureT1d?  Oldest and Youngest Daughters

Pausing for only a moment, I slowly explained the story of youngest daughter's diagnosis.  Some of the details are still hard to share, such as how she was so weak, that she rode around in a little red wagon for the first three days with the IV pole attached to a make-shift mobile pole.  Or how the IV line could not be inserted as her veins were so small from the massive dehydration that she had suffered from not getting her diagnosis until, well, the reality is that it was almost too late.

After explaining the first diagnosis, I went into the story of our oldest daughter's diagnosis.  Mouths dropped open because having only one child with Type 1 Diabetes was expected.  Two?  More than enough reason of why it was important to improve care.  Still I continued the 2nd dx story and shared how oldest daughter was diagnosed early through her own verbalization of symptoms - but also explaining how the flawed healthcare system had me lying about which patient needed care when I called into the clinic for help.  Even worse, how I had learned to fight through the hospital bureaucracy to get what I needed which was an out-patient OGTT, pre-diabetes care at home and an insulin pump.

When I finished, the table was silent.  

The story hit home.  Our family is representative of millions of other families.  To be exact, 35 million families worldwide.  Closer to home, about 2 million families.  

As I write these statistics, I can't help to again focus on a cure.  It's what we need.

However, the compelling answer was still waiting and that was for the question of what I wanted while we still live with T1d.  For me, it is simply an overhaul of our current system that begins to focus on patients and families.   

Before I left to head to this conference, I asked the Naturally Sweet Sisters readers what they wanted too.  

Naturally Sweet Sisters to Readers:  

Quick Question About Medical Care.... What is the one thing (or more if you have a lot!) that you wish would/could happen during your A1c appointment in hopes of making your visit go smoother? Please reply below.

From Laura, " It gets a little boring. Same general thing over and over. Two teens transitioning care. "Doing great. You could work on this." "OK we'll do that." Real-life teen life happens. Repeat every three months. 
It would be great if they could have all the logs downloaded and printed out before our appt."

From Ambermarie, " Just wish all endos would reassure patients that it's okay to have one bad a1c or that high or low bg.   I had one endo that always made me feel like my type 1 was my fault and that I wasn't trying hard enough or that I was just not caring or taking care of myself no matter how hard I tried."

From ANON, "  Type 1 is confusing and draining.  I don't know who to call and I can't seem to get help when I need it.  My daughter is falling apart and I am not sure where to go for support. What do you think I should do?"

And just like my diagnosis story, the comments from Naturally Sweet Sisters community are also the same as millions of others.  Through changing our current system into something that allows the interaction of multiple sources and by focusing on patients/families, we can get to a place where waiting for a cure is not just like being stuck in an elevator listening to bad musak.  Imagine John Tesh on replay for the rest of your live.  Yes, you would seek change too.

The First Look at What Do Patients Want?

As the meeting continued, we started to find several common themes.  Here is a great representation of what I hope I left with the team.  

Thinking about What Do Patients Need after leaving the conference.

Notice the lines traveling from area to area in a spiderweb? Notice that the center is clearly marked as Patients/Families?  

Those are the two most important things to remember as the system begins redesign.

1.)  Patients/Families 
2.) All points intersect back to what Patients and Families WANT.  

With this, we begin to see a clearer picture of designing a system around the needs of patients and families.  

In other words, a system that allows the patient to acquire the level of care that they need, when they need it.  

Should be a simple fix, right?

Yes, I say that with a grin.  I know there are mountains to move before it can happen.  

But as Dr. Margolis said just when the conference ended, "We aren't going to forget what is most important when you leave today.  This isn't going to stop here.  I promise you that we will keep working on it.  We know it is THAT important."

I believe him.

Want to help design the new T1D Health Care System?  Follow along with C3N  on Twitter @C3NProject and #MakeHealth #PatientsAsDesigners with ideas that you have to see a patient designed health care system.  Be sure to give a shout-out to Amy @natsweetsisters and say hello!  

Together, we CAN!  #curet1d

Naturally Sweet Sisters Blog Posts for November is National Diabetes Awareness Month 2014

Day 1
Day 2
Day 3
Day 4
Day 5
Day 6
Day 7
Day 8 #MakeHealth See us on Twitter @natsweetsisters
Day 9 #MakeHealth  See us on Twitter @natsweetsisters
Day 10 #MakeHealth See us on Twitter @natsweetsisters
Day 11 #MakeHealth See us on Twitter @natsweetsisters

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