You Are.

She went and did it again.


You know...


Sprout.
Blossom.
Mature.
Heighten.


She grew.


I crept in for a post-correction finger poke the other night.  She stirred a little before opening one eye..."What am I, Mom?"


I looked at her meter, and then kissed her nose, half nuzzled under the blanket.  I stroked my fingers through her hair, and answered with "You're my amazing, beautiful, wonderful, incredible, one-of-a-kind angel ."


It didn't matter that her eyes were closed or that the room was dark.  I could feel the eyeroll.  "I know all THAT, Mom.  What.    is.    my.    blood.    sugar?"


I wanted to reply that she's a million marvelous things wrapped up into one very special package.  I wanted to tell her that every milestone I've witnessed has been fascinating to me.  I wanted to whisper in her ear how awestruck I am by her ability to face each new day with a smile.  And then I wanted to scoop her into my arms, and tell her that being her mother is, by far, one of the greatest blessings my life has ever seen.


"You're sugar is 85.  You still have a little IOB left from that correction a couple hours ago, so I'm going to get a juice and set a short temp basal decrease."


(Sidenote:  I think it's crazy that my little girl understands this language.  Diabetonese T1.)


From my phone, I posted our little exchange on Facebook (I mean, hello, isn't EVERYONE awake to update FB at 2 am?).  Then I programmed the alarm for another check a couple hours later, and headed back to bed. 


And that's where this story ends -- or maybe where it begins?  You see, that middle of the night FB post has ultimately become one of my "most liked" status updates ever.  


It dawned on me that there are people with diabetes (PWD) everywhere who are tossed between insurance companies and busy doctor's offices.  To medical supply companies and pharmaceutical companies and technology companies, they're just a number.  Their personal worth is often summed up by the black and white lab results on paper.  They wander from one day to the next, facing stereotypes and dodging stares when caring for themselves.


And so, to each of you -- young and old -- who poke your fingers, deal with insulin, and press onward in spite of all of it...I just wanted to tell you something:

Somewhere in your life, there is someone whose days are brighter because you're a part of them.


Somewhere someone's heart would be incomplete without you.


Somewhere someone understands what a balancing act this life is, and thinks you're a wonderful, incredible, one-of-a-kind angel -- regardless of what your A1c may be.


Somewhere you are someone's dream come true.


It could be a parent, a child, a friend, a sibling, or a spouse.  


It could be all of them.


In case you need a reminder, you should know...


YOU are strong.
YOU are distinct.
YOU are cherished.


YOU are so much more than the number on your meter.

Transforming Lives - Notes

Transforming Lives:  Diabetes Today and Tomorrow was an incredible outreach conference event sponsored by the JDRF Desert Southwest Chapter.  Today I'd like to share some of the notes Mr. Rose and I took during our conference experience:

H. Peter Chase, MD is the Executive Director, Clinical Director, Director of Pediatric Clinic, Emeritus and is currently Professor of Pediatrics at the Barbara Davis Center for Childhood Diabetes, University of Colorado.  Dr. Chase studies the use of continuous glucose monitors in youth and the development of algorithms to prevent hypoglycemia using a closed loop system and screens family members of patients with type 1 diabetes to detect those at high risk for possible participation in prevention studies.  He is the well-known author of the three most frequently used family education books using the Pink Panther character as well as over 300 research articles and book chapters.  Dr. Chase will deliver the opening keynote.

The day started with an opening keynote by Dr. Peter Chase.  Dr. Chase authored Understanding Diabetes...also known as "The Pink Panther Book".  "The Pink Panther Book" was an instrumental tool for Mr. Rose and I after Sugar was discharged from the hospital following her diagnosis in 2005.  I read it from cover to cover, highlighted many sections, earmarked numerous pages, and carried it with me in her diaper bag everywhere for the first several weeks.  It truly was the foundation for our crash course in Type 1 Diabetes management.  After coming home, I could barely remember anything we learned during her hospitalization.  Thank goodness for "The Pink Panther Book"!  Suffice to say that, for me, the opportunity to hear Dr. Chase speak was quite an honor.

• A1c target goals that he believes lead to the best chance of life without diabetes-related complications: 

1. Ages 6 years and under:  7.5% - 8.5%
2. Ages 6 years thru 12 years:  Less than 8.0%
3. Ages 13 years thru 19 years:  Less than 7.5%
4. Over 19 years:  Less than 7.0%

• Noted that DKA is the leading cause of death in people with Type 1 Diabetes who are less than 30 years of age.

• Discussed importance of not over treating low BG's, and reminded audience that a BG of 80mg/dl is a NORMAL BG.  80mg/dl requires treatment if the person is believed to be dropping further (i.e. "feeling low", other physical symptoms, or an accurate CGM reading indicating that blood sugar is dropping). Stated that a "true low" BG is less than 60mg/dl, and emphasized that everyone spends part of their day in the 60mg/dl - 70mg/dl range.

• Reported that globally the incidence of T1D is rising at a rate of about 3-5% per year.  It is believed that "something environmental" can be attributed to the rise.

• Also reported his research indicates that approximately 75% of "bad lows" occur at night.

________________________________________________________

Lauren Woodward Tolle, Ph.D. is a licensed clinical psychologist in Denver, CO.  Lauren completed her doctoral work at the University of Nevada, Reno and postdoctoral work at the University of Colorado School of Medicine. Lauren also has a Master’s degree in Applied Health Psychology from Northern Arizona University. Lauren’s research interests include evaluating clinical outcomes of evidence-based practice in primary care as well as pediatric settings.  Lauren has conducted research and published in the area of improving diabetes management and family communication for adolescents with type 1 diabetes. She greatly enjoys working with this population. In her spare time, Lauren enjoys spending time with her family including her newborn son, Liam, in beautiful Colorado.

Next, I attended "The Teen Age:  Managing Type 1 Diabetes During Adolescence".  I don't have very many notes from this session, because Tink had become restless in the KidZone and I was called out to tend to her.  (She just needed her mama for a bit...well, at least until Cherise offered up her snazzy iPhone and found a Dora show for her to watch.)

Dr. Woodward Tolle authored a workbook titled Help with the Hard Stuff.  This workbook is designed for T1 teens and their parents to work through over the course of 9 weeks.  Here's the description from Amazon:

Help With the Hard Stuff is a workbook designed for teens diagnosed with Type 1 diabetes and their parents. Living with Type 1 diabetes is difficult enough for adults, but for teenagers it adds to the already increased stress of social pressures, self-awareness, and responsibility. This workbook can help the whole family better understand basic diabetes information and important facts associated with good diabetes care. It also provides evidence based cognitive-behavioral strategies that can be helpful in facilitating health behavior changes, such as when problems arise with treatment adherence. Help With the Hard Stuff is designed to assist in making the transition in care from parent to adolescent smoother and more successful. It does this by addressing key factors that are associated with better adherence such as self-monitoring of blood glucose, coping effectively with a chronic illness, gaining social support, improving family communication. It also assists parents in learning how to provide autonomy-promoting support and provides a glossary of commonly used terms in addition to a section with resources for more information.

________________________________________________________

Gary Scheiner MS, CDE is the Owner/Clinical Director of Integrated Diabetes Services.  A certified diabetes educator, masters-level exercise physiologist and person with type 1 diabetes, Mr. Scheiner has dedicated his professional life to improving the lives of people with insulin-dependent diabetes.  Mr. Scheiner has authored four books:  You Can Control Diabetes, Think Like a Pancreas, The Ultimate Guide to Carb Counting and Get Control of Your Blood Sugar.

Meanwhile, Mr. Rose attended "Managing Blood Sugars During Sports and Fitness Activities". Gary Scheiner authored Think Like A Pancreas, another book I would consider to be one of the most helpful tools I've encountered in preparing me for the journey of raising a child with diabetes. I've also attended several of Gary's online classes through Type 1 University, and not only do I find him to be a wealth of valuable information, but he's an awesome presenter as well! 

• Optimal BG for strength, stamina, speed/agility, flexibility, safety, and mental sharpness is 140mg/dl.

• If exercising for greater than 90 minutes, small snacks should be taken without insulin coverage during the duration of activity.  (An example would be a couple jelly beans periodically while exercising.)

• Once the temperature reaches 90 degrees, insulin begins to break down, and lose it's effectiveness.

• Other variables that affect exercise:

1. Active insulin
2. Insulin site
3. What has been eaten
4. When it was eaten
5. Emotional state
6. Temperature and humidity
7. Pain/Discomfort with activity
8. Amount of activity

_______________________________________________________

Manny Hernandez heads the Diabetes Hands Foundation, a nonprofit that connects, engages and empowers people touched by diabetes through its social networks, TuDiabetes.org (in English) and EsTuDiabetes.org (in Spanish) and programs like the Big Blue Test and No-SugarAdded Poetry. Diabetes Hands Foundation offers information and support to nearly 200K people around the world every month.

Cherise Shockley was diagnosed with Type 1.5/ LADA (Latent Autoimmune Diabetes of Adults) in 2004. She is the Founder of Diabetes Social Media Advocacy (DSMA) a real-time communications resource for the diabetes community, their family members and caretakers. She is moderator of the DSMA twitter chat (diabetessocmed.com), and co‐host of “DSMA Live” (blog talk radio show). Cherise is a contributing author to “MY SWEET LIFE: Successful Women with Diabetes.” 

Bill Woods  is the founder of 1HappyDiabetic.com a website that encourages people with diabetes to live a happy and healthy life.  Mr. Woods  was awarded the 2009 TuDiabetes.org Creative Mind award voted on by the diabetic online community.   His award winning videos for “Making Sense of Diabetes” led the way in spreading awareness of diabetes through internet video creation.

NEXT UP:  The DOC: Diabetes Online Community!  HOLLA!  WOOT WOOT!  I had the honor of introducing these awesome speakers to the audience :)  And they had some pretty interesting things to share...

• Social media isn't a fad.  It's a fundamental shift in the way we communicate.  

• If Facebook were a country, it would be the THIRD largest populated country in the world.

• Together the DOC has completed and shared petitions, participated in the Big Blue Test, and battled misconceptions in the media.

• Ways to evaluate social media resources:

1. Does it agree with clinical standards?
2. Are there accessible and readable privacy policies?
3. Are there controls on sharing personal data?
4. Are there honest disclosures?
5. Are there any voluntary accreditations?

It was fun to see some familiar faces during the presentation, even though they weren't there in person... Hi Kelly, Mike, George, and Scott!

And I laughed when my Facebook page popped up there...

Anyway, the DOC session was fun to watch unfold after several conference calls spent piecing it together.  I thoroughly enjoyed every moment of the time I was able spend with my friends, and hope to have the chance to hang out with them again :)
_______________________________________________________

Aaron J. Kowalski, Ph.D., oversees JDRF-funded research aimed at accelerating the delivery of therapies that will help keep people healthy while living with type 1 diabetes, minimizing their risk for developing diabetes complications, as well as therapies that will help those who have developed diabetic complications. Dr. Kowalski is an internationally recognized expert in the area of diabetes technologies and has been a leader of JDRF’s Artificial Pancreas Project, a multi-million dollar initiative that began in to accelerate the progress toward a closed-loop automated insulin-delivery system. He has authored numerous articles in the field, including a landmark study in The New England Journal of Medicine which revealed the effectiveness of continuous glucose monitors in type 1 diabetes. Dr. Kowalski has traveled widely across North America and abroad describing diabetes research progress, and is known for his ability to translate science into easily understandable concepts.  Dr. Kowalski will deliver the keynote research update.

Dr. Kowalski delivered the closing research keynote address.  I have to admit that I didn't take many any notes as I was captivated by the oddly familiar inspiration happening inside.  I remember attending research updates shortly after Sugar's diagnosis, and feeling empowered and motivated.  Somewhere in the last few years, I lost my ability to feel those things about research and technology.  I mean, I've kept up with it, but I often find myself building a wall around my bubble of HOPE.  Rather than allow it's energy to permeate my heart and soul, I tend to turn off the switch and move on with the day-to-day grind of raising a child with diabetes.

It felt good to feel hopeful again.

Anyway, I had the pleasure of hearing Dr. Kowalski a few years ago, and remember thinking that he was so personable and easy to understand.  Sometimes "research chat" gets over my head and intimidating, but both times now that I've heard him, that hasn't happened.  I'd highly recommend anyone take the opportunity to hear him if you have the chance.

I found comfort when he discussed the Artificial Pancreas Project.
I found comfort when he discussed micro/macro encapsulation and beta cell regeneration.
I found comfort when he discussed potential vaccinations to prevent T1D from developing.

I found HOPE (again) in Treatment, Cure, and Prevention.

This is Part 2 of a 3 part series.  Stay tuned as I share my closing thoughts and personal impressions. More on Transforming Lives...


Part 1:  Transforming Lives - Overview 
Part 2:  Transforming Lives - Notes
Part 3:  Transforming Lives - Closing Thoughts

Stop, Drop, and Drink -- Wherever you are, even if it's not in the designated food area.

Ah, Spring Break.

I told the girls they could pick one "big" thing to do during their hiatus.  They mulled over a couple movies, contemplated a bouncy house place, and talked about the zoo; but ultimately decided they wanted to spend a day at the Children's Museum of Phoenix.  We used to have a family membership, and would play there several times a month.  Since everyone is in school now, it's been harder to find the time to visit, and we haven't been in about a year.

Tuesday was the day, so we packed up a lunch and hit the road!

Lunch with the Birds.

The "Noodle Forest".

Painting a rocket ship.

As predicted, they had a blast.  They absolutely LOVE the 3 story play structure, so we made it a point to stop and play there a second time before heading home.

I found a spot behind the chairs and propped myself up against a wall.  I had a better look of the entire structure from that viewpoint, a little further back.  I was trying to watch the girls whisk up, down, and around all the twists and turns, but lost sight of Sugar momentarily.  After a few minutes, I found her hobbling away from the play area, towards me.

I pulled out her testing supplies.

She dropped into a slump beside me.

66.

I could tell she was dropping fast.  On auto-pilot, I opened a juice box, handed her some Nerds, and opened the strawberries we had leftover from lunch when a security guard sauntered over.

"We'd really prefer that you not eat or drink on the carpet.  There's a designated food area on the second floor."

"I understand, but my daughter has diabetes and is experiencing a low blood sugar.  She needs this snack as medicine right now."

"That's fine, but you'll need to move up those stairs to the designated food area."

"Sir, we can't move right now.  I have other children in the play structure, and she needs this sugar right now.  I don't have time to find them, gather our things, and move upstairs.  If we don't treat this low blood sugar right now, she could have a seizure or become unconscious."

"You need to take the food upstairs to the designated food area."

"I'm not moving.  You can get a manager if you need to, but I'm not moving."

At this point, Sugar was getting very upset.  She was afraid she had gotten me into trouble, worried that they were going to take me to jail, and was refusing to finish her fast acting glucose.  She started crying and I could tell she was panicking because she knew her blood sugar was low, but she was afraid to continue treating it. (Dramatic much?  Probably.  But, in almost 7 years, she really hasn't ever been told that she couldn't treat a low blood sugar wherever she was, so to her it was a big deal that we were "breaking the rules".)


I assured her it was fine to finish her juice and chomp on her Nerds.  She guzzled the rest of her juice, retested at 86, and refused to take anything else.  I really wanted to see her up over 100 before she went back to play, but she got up and ran off faster than I could stop her.  Later she admitted to me that she knew someone was going to be coming back to talk to me.  She wanted to show them that the problem had been taken care of, and they didn't need to ask me to move again.  She was so worried about getting me into trouble.

The manager came, and there wasn't an issue.  He assured me that it was fine to manage her low blood sugar whenever we needed to, anywhere in the museum.  I thanked him, and explained that we completely understand the need for having a designated food area, especially at a children's museum!  No one wants to deal with sticky exhibits, food crumbs, and the bugs that could become a problem if food and drinks were allowed all over the place.  I explained that we ate our lunch in the designated area, but we simply could not move there to manage this low blood sugar situation.  He agreed, and that was that.

I also understand that the security guard was simply doing his job.  It's his JOB to make sure everyone is following the rules.  I completely understand that he had no idea that my daughter was having a medical emergency.  From an outsider's viewpoint, she probably looked fine.  Unlike a child with epilepsy who has a seizure, or a child with asthma who has an asthma attack, there really weren't any obvious outward signs that my daughter was having a low blood sugar.  I also realize that he may have never encountered a child with diabetes before.  I appreciate that he was working hard to make sure everyone was having a good experience at the museum.  To his credit, he was very nice, and I never felt as if he was being confrontational.  I always felt he was just trying to enforce the rules.

I guess the only thing I'd like to see change was the discussion about moving to the designated food area.  If a parent identifies that food/drink is being used for medical management, it seems that offering to see if the parent needs help might be a better approach.  Or simply acknowledging the situation, and then going to get a manager to deal with things from there?

Last year, a friend of mine dealt with a very similar situation at the same Children's Museum. She followed through with the CEO, and was assured that staff would be educated about how to handle this situation in the future.  I have no doubt that her experience and follow up was the reason our situation was resolved without an issue.  I hope that, by sharing our dilemma earlier this week, we're able to help other families avoid a problem in the future.

Perhaps it's time for a review?  Diabetes advocacy is a passion of mine. I'd be happy to come talk to museum staff to explain what Type 1 Diabetes is, and why there might be times when low blood sugars must be managed immediately, regardless of where it is occurring. It's also important not to allow a situation to escalate.  We could have had a true disaster on our hands had I not been able to convince my daughter to finish her juice.  It's important to remember that these conversations are happening in front of our children, and no child should be left feeling as if they're doing something wrong when managing a situation they have no control over.

In the end, everything worked out fine for us.

I hope the same can be said for other families who are raising a child with diabetes that may visit the Children's Museum of Phoenix in the future.  Every day 40 children are diagnosed with Type 1 Diabetes.  There's a good chance another T1 child is there playing, even as I finish this post!