Friday, June 24, 2011

Dear big ole' healthcare organization

Dear big ole' healthcare organization,

How long have we known each other; thirty-eight, maybe thirty-nine years? In that time I've been faithful. I've kept myself healthy and haven't required too much of your resources. I memorized my healthcare number when I was six. When I needed antibiotics, I took the whole lot as you instructed. When I was pregnant, I cut out caffeine and ate healthy foods. I drank my milk and ate my cheerios and broccoli. I had drive through babies, leaving you at the earliest possible moment - saving you money. I brought my kids for all of their baby appointments, and made sure they got their shots. I introduced vegetables early and often. I didn't complain when one of your doctors left part of a placenta behind and I nearly bled to death in a church bathroom.

I listened to you. I did what you said. I was a good girl. But now I'm just pissed off, because now you're messing with my baby.

Sarah requires a continuous glucose monitor (CGM) because she is 11 years old and has a minimum of 90 years of type 1 diabetes ahead of her (unless/until they find a cure). Sarah is, right now, developing habits that will last for the rest of her life. Studies have shown that a personal CGM, in a real-world setting, improves glucose control and reduces the rate of severe hypoglycemic episodes.

A CGM provides us with the ability to see Sarah's bloodsugars in real time; thereby acting much more swiftly to catch and deal with impending high or low bloodsugars. The CGM assists Sarah in making good food choices, as she learns that some foods lead to this:

While other choices lead to this:

Extreme high or low bloodsugars, as you well know, can lead to all sorts of bad things, including seizures, coma, diabetic ketoacidosis in the short term - and frequent high bloodsugars lead to complications such as blindness, kidney failure, heart attacks, stroke, and limb amputation in the long-term.

I fully expect that Sarah will absolutely, positively, without a doubt NOT experience these complications. And do you know why? Because we are teaching her now to take care of herself and manage her bloodsugar. The CGM is a HUGE part of that process. The CGM provides a safety-net to ensure that Sarah's bloodsugars are in range as much as possible. The CGM helps her to avoid extreme lows, and catch extreme highs before they become dangerous. The CGM gives her confidence to be active, exercise, play with friends, have overnighters, and be A NORMAL KID. I'll also mention that the CGM allows her mom to get much more consistent sleep - something I've been deprived of since her diagnosis.

The result of the CGM is that Sarah is healthier and more confident. She doesn't have to wonder and worry if a debilitating low is around the corner. When Sarah goes low, she often doesn't feel it until it's severe, and she's in the 50's or even 40's (for reference, a normal, fasting bloodsugar is around 80).

At her worst low ever, she was perfectly fine one moment, began wailing that her stomach hurt the next moment, and was unconscious about ten seconds later. Yeah, that was really scary, in case you're wondering.

So as a mom, I want every tool available to keep my daughter healthy. And lets face it, the healthier she is, the less she's going to cost YOU in the long-term! So far, in fifteen months of diabetes, we've never missed an appointment, and Sarah has never had to be hospitalized since her diagnosis. She hasn't yet had a bloodsugar above 400. Do you know why? This is because we are vigilant. I know that an illness could change this run of luck in a heartbeat, but by having the CGM, I will have warning if she begins to skyrocket, and I won't wake up in the morning to a 400, 500, or 600 bloodsugar and ketones. With the CGM, the worst of diabetes cannot sneak up on us.

We have a common goal; keeping Sarah as healthy as possible. Yes, the CGM sensors cost about $200 per month - but if she's hospitalized, how much is that going to cost you? If she develops complications and needs dialysis, or heart monitoring, or expensive drugs - how much is that going to cost you? Ya know, I'm kind of on your side here too. I'm trying to save you money, because studies have also shown that better control of bloodsugar leads to less complications.

So let's stop fighting. Let's kiss and make up. Let's agree that we have a mutual goal and that we both want Sarah to stay happy and healthy.

Come on - what's the downside?


Sarah's mom

p.s. I don't want to fight, but I'm not afraid of you either. And you know what happens when you anger a mama bear, right???

Friday, June 17, 2011

A letter to the DOC

I originally wrote this back in June, 2011. In light of some recent events, I thought it was time to bring it up again (newly edited for content of course). Yes, families fight, but we all have the same goal - keeping our children safe - so supporting each other is an absolute MUST!

Dear DOC (Diabetes Online Community),

I've got a few things on my mind that I've wanted to express for awhile. First, a giant Thank You! I've met some of the most amazing people in the last two years, and learned so much. The doctors and nurses certainly do their best to educate when your child is diagnosed with diabetes, but they have only a few minutes every few months - and most of them don't have practical experience, only clinical. The knowledge I've gained from people who live this day in and day out is astounding. I've learned;
  • To listen to my daughter and her needs. To give her help when she wants it, and let her be independent when she needs it. I've learned to let her own her diabetes, but I pay as much of the mortgage as necessary.
  • That there are still many ways to manage diabetes; pump or MDI, different types of insulin, carb counting and fixed carb programs. And different plans work for different people.
  • That Sarah is a person with diabetes, not a diabetic. She will not be defined by this disease.
  • That I can manage things like ice cream and pizza (some times better than others).
  • That I'm not alone in my worry and sleepless nights. That most doctors tell you to sleep, while most parents ignore that advice.
  • About continuous glucose monitoring - though I don't understand why it isn't universally available (even though it turned out not to work for us, in a rather spectacular and icky fashion)
  • That there's a far greater variety of items available to treat lows than glucose tablets (yuck!).
  • That there are amazing people with diabetes in all sorts of professions who are healthy, happy, and thriving.
  • That parents in the DOC have many of the same challenges with constant worry, stress, schools, daycare, playdates, friends, activities, spouses, and sleep deprevation.
Diabetes brings us together in the DOC. Hundreds, maybe thousands (I think I've "met" hundreds), of people with diabetes and parents of children with diabetes are online every day. When I've needed someone to talk to, to ask a question of, to vent to, or to sob on a virtual shoulder - someone from the DOC has been there for me.

Again, thank you! Because of you I am definitely saner, smarter, tougher, and more ready to handle the daily challenges of diabetes.

While I've met some amazing individuals, I want to remind all of my friends that people in the DOC are still...well...people. With all the positive qualities and terrible failings that make us human. For every hundred amazing people I've met, there's also been someone who isn't so amazing. There are people (just like in the real world) who are only looking for attention, who are trying to take advantage, who are hoping to make a fast buck, who have questionable moral character, or who are just negative and unhappy. It shouldn't come as a surprise, because we're all people and, in fact, we might just have a little more stress in our lives than the average bear.

Don't let negative people get you down, and don't let them change you by making you angry or cynical. Remember what we all learned in grade school about fire? Stop...Drop...Roll

Stop - Don't let others negativity affect you.

Drop - You have the power to drop a conversation, or block a person who isn't who they say they are (oh yeah - I have experience here...)

Roll - Negativity call roll right off you, if you let it. Don't let it sit on your shoulder making you angry - shrug those shoulders and let that negativity roll away. Then smile, because you are a strong, wonderful person who won't let anyone else determine how you feel today!

My messages are these:

  • Choose your friends wisely.
  • Be patient and kind when you can, and firm and kind when it's called for.
  • Don't be afraid to stand up for yourself, but try not to drag anyone else down in the process.
  • Sometimes we can agree to disagree, and sometimes we are too different and need to go our own way - and that's okay!
  • Be honest - we're all in this together.
  • Be supportive of different points of view.
  • When responding in writing, think about the tone before you hit enter - once it's out there, it's hard to take back.
  • If you're upset when you write something, put it in MS Word first, then go have a cup of tea, take a bath, read a few pages of your favorite book - then reread and decide if you still want to hit enter.
I love you guys, you are my sanity and some of my best friends. When you're hurting, I'm hurting. When your kids are sick, I worry for them as I know you worry for Sarah. My only regret is that most of you are too far away to hug, and there are a lot of times I want to reach my arms out and give you a big one - and there are times I need one from you as well.

Thank you, my friends, for being there for me and allowing me to be there for you.

Thank you from the bottom of my heart.

Thursday, June 16, 2011

Tuesday, June 14, 2011

Will social networking cure diabetes?

A couple of weeks ago a very wise woman (you know who you are) suggested to me that Facebook just might be the cure for type 1 diabetes, as well as many other diseases. At face value, that comment seems kind of silly. But you know what, I think she might be right!

My personal story

When my daughter was diagnosed 15 months ago with type 1 diabetes, I knew nothing. The doctors gave me basic instructions and sent us home. Being somewhat internet savvy, though pretty new to social networking, I went online. And holy moly! I found HUNDREDS of parents in the same boat as I! I asked a question, and I got ten amazing answers back. I learned 347 times more from other parents of kids with diabetes that I learned from the doctors - and I continue to learn something new daily. You know what this means? It means I have more knowledge, better and broader resources, and a place to ask questions 24/7. It means I have a healthier kid with better bloodsugar than I would have had if I'd tried to go it all on my own. It means that maybe, just maybe, keeping her healthier will make it easier to turn those cells back on or regenerate them once the scientists figure out how.

How can Facebook cure diabetes?
Okay, so that skinny insanely rich guy who started Facebook probably isn't sitting in a lab somewhere pouring over test tubes looking for a cure for Sarah (though that's kind of a cool picture). But social networking sites such as Facebook are opening doors to communication that have never existed before.

Think about it. We are a Force! Since I've been on the scene, I've seen how well people with diabetes and parents of kids with diabetes rally. Voices from our community have been there when magazines, blogs, newspapers, and talk shows get it wrong. We've demanded apologies, corrections and retractions - and gotten them! Through the social network, I learn about new treatments, successes and failures in research, stories of hope and despair, and new treatments. I learn about it nearly in real time!


And we aren't the only ones on the social network. Scientists and researchers are people too, and through these same means, they are becoming more connected. Email was a great invention - but the social network is like a constant steam of ideas that flow nearly as fast as thought. It's an ongoing conversation. Researchers from India, China, the U.S, Canada, the U.K., and Tinbuktu can all communicate in real time - and just because we can't see it doesn't mean it's not already happening. Just as we share ideas for better care of our kids, they can toss ideas and theories back and forth.

Additionally, social networking is resulting in accountability. When a mistake is made, it's not only news to those few people who happen to read that medical journal or watch that show - it makes the network, and travels around the globe at warp speed. As steps are made towards a cure, we know about them. We know who is involved, and we know which companies are making strides. We know who to thank, who to support, and who to criticize.

We are an ARMY and diabetes is our war.

Together we fight

Together we will win!

Friday, June 10, 2011

Try to walk a mile in these shoes...

Tomorrow our family will join thousands of others in our area, and tens or hundreds of thousands around the U.S. and world, and walk for diabetes.

The annual walk is more than scores of feet putting miles on battered tennis shoes. The walk is a chance to stand up for something, to make your presence known, and to meet people who care about the same things you care about. It's also a chance to raise money for research that will someday cure my daughter, and so many others, from autoimmune diseases such as diabetes.

So try to imagine a day in the shoes of a person with type 1 diabetes. Type 1 diabetes is a disease that never rests, so as a person with type 1 diabetes - or the parent of a child with type 1 diabetes - you think about diabetes from the moment you wake until you sleep, and often it wakes you during the night as well.

Imagine a day like this: You wake in the morning and test your blood sugar. Then you decide what to have for breakfast, analyzing the box of waffles, the bagel, the peanut butter to make sure you know how many grams of carbohydrates you are consuming. You dose by giving yourself a shot or programming your insulin pump. You hope you did it right, because if you made even a small mistake, your morning isn't going to go well. Rinse and repeat for snacks, lunch, dinner, dessert -
...all day
...every day
...for the rest of your life.

So I wanted to take a little time to introduce you some of the beautiful people I know with type 1 diabetes, and hopefully stir up some passion for a disease that affects you in some way, whether you realize it or not.

This is my Sarah. She is my beautiful, charming, enthusiastic eleven year old. Sarah is passionate about musical theater; she loves to sing, dance, and act. Sarah is an active member of her student council in her elementary school. She's a little sister, a big cousin, and a loving daughter. Even though Sarah is a big girl now, she still loves to giggle and be silly. Sarah has type 1 diabetes. I walk for Sarah.

This is Carter. Carter is nine years old. An avid sports enthusiast, Carter loves to play basketball and soccer. He is an impressive little fisherman. Carter has type 1 diabetes. I walk for Carter.

Justin is 10 years old and was diagnosed in 2008. His parents are constantly amazed at his strength and determination. Justin is a caring and loving son with a huge heart, more than his parents could have ever hoped for. He is a hero. Justin has type 1 diabetes. I walk for Justin.

This is Brandan! Brandon loves to learn, and his favorite subject is space. He wants to be an astronaut. Brandan has two little brothers. Wouldn't it be great of the three of them could fly to the moon together? Brandan has type 1 diabetes. I walk for Brandan.
Gavin was six when diagnosed last year. Through his website he educates people about the dangers facing our oceans. Recently, Gavin became a Youth Ambassador for the Dawn Junior Wildlife Champion program. Gavin has type 1 diabetes. I walk for Gavin
This is Jordan. Jordan is an incredibly active young lady. She loves to sing and dance. Outdoor activities keep her happy, including camping, enjoying the beach, and swimming. Jordan has type 1 diabetes. I walk for Jordan.

This is Cadence. She LOVES the color orange, fish & music. When she grows up, she wants to be an ichthyologist :) Cadence is in 1st grade & is in the gifted program for reading. She enjoys drawing & coloring...& talking :)  Her life motto is "I have diabetes...diabetes does not have me!"  Cadence is an amazing, sweet, sassy girl, who just so happens to have hurdles that she will need to overcome for the rest of her life...but knowing her, she will do it all with a smile on her face & determination in her soul. Cadence has type 1 diabetes. I walk for Cadence.

Riley is 10 years old. She loves running around outside playing with her cousins. She just got this custom made fanny pack in the mail. Riley carried her blood glucose tester, glucose tabs and a juice box while she is outside playing. She often has low blood sugars while doing her favorite things, and has to stop to treat herself when she should just be able to play. Riley has type 1 diabetes. I walk for Riley.

These kids all have type 1 diabetes. And these kids are the lucky ones. Undiagnosed type 1 diabetes kills. But these kids deserve to grow up safe and strong and healthy, without worrying about complications. These kids are your friends, neighbors and students. They are future doctors, entertainers, and astronauts. They need your help.

Can you find $10, $5, or $1 for diabetes? Funds donated to organizations such as the American Diabetes Association and the Juvenile Diabetes Research Foundation help in so many ways, including:

  • Development of new therapies and work towards a cure
  • Ensuring access to affordable, quality healthcare to ensure people with diabetes have the tools to manage their disease for the best possible outcome
  • Reduce discrimination in schools and the workplace and make sure our schools are a safe place for kids with diabetes
  • Improve public awareness of the serious nature of diabetes to encourage earlier detection and aggressive treatment
You can get involved by taking action. Sign up for one or more walks each year. Be an advocate; learn about diabetes and share your knowledge. Diabetes is one of the most misunderstood diseases out there. You can help change that by learning and educating those around you.

Let's not hide from diabetes anymore. Let's STOP diabetes!

Sunday, June 5, 2011

I am not a doctor!

I am not a doctor, or any sort of medical professional. Yet, the last four days of my life have been consumed with attempts to complete what would seem like a fairly simple test. I'm testing basal. Unless you're an Endocrinologist, or a person with diabetes, or a parent of a person with diabetes - you probably think basal is a tasty herb that goes great with spaghetti...

I'll warn you now, the remainder of this post is rather technical and unless you are an analytical type or a science type, you might find it boring. To me it represents pretty much all I've been able to think about for four days - so bear with me...

Basal insulin
The purpose of basal insulin is to keep the blood sugar regulated when there's no food. Overnight, for example. A healthy pancreas will continuously regulate blood sugar by constantly excreting tiny amounts of insulin.  People with diabetes need a basal insulin because their bodies don't excrete those tiny regular amounts, or don't excrete enough (in the case of a honeymooner like my Sarah). At night, Sarah needs a whole lot of basal (comparatively).

A few days ago (before testing began) Sarah's basal settings looked like this:
12:00 AM 0.400
4:30 AM 0.575
7:30 AM 0.350
10:00 AM 0.150
5:00 PM 0.325
10:00 PM 0.250

Notice that between 10am and 5pm, she only gets 0.15 units per hour, while during the night and early morning she gets more than triple that amount. Strangely, we know the nighttime basal is correct because it's the easiest one to test. All I have to do is stay up all night and test her hourly (which I did about a month ago), and now I look at her CGM each morning to confirm she's staying in range during the night.

We test basal by having Sarah go a long time during the day without food. For example, she ate breakfast this morning around 8:30. Generally insulin lasts up to 4 hours, and food is about the same. So both the breakfast and insulin she took with breakfast should have been used by by around 12:30. The test begins - and we test Sarah every hour. If her basal rate is perfect, her blood sugar will remain stable. Unfortunately, we did not achieve perfection...

Additionally, basal tests have to be aborted if Sarah's blood sugar goes below 80, and herein lies our problem - keeping her above 80 without food seems like an impossible challenge!

Day 1 - Thursday - Attempting to test late afternoon basal (4-8pm)
211 at lunch
84 at 4:05
75 at 4:49 - not happening...

Day 2 - Friday
85 at lunch
65 at 4:07 - definitely not happening...

Day 3 - Saturday
112 at lunch
81 at 2:05 - Nope, still not happening...

Day 4 - Sunday (today)
100 at breakfast
110 at 12:18
63 at 1:48 - + 16g. of carbs (no insulin - so I'm thinking we can rescue this one. If her cereal brings her up and she still has no insulin, maybe I'll learn something)
139 at 2:47 - looking good - Reduced basal to .05 per hour (practically 0!!!)
102 at 3:47 - Um, kind of an unexpected drop
67 at 4:53 - Well crap. Thinking maybe I should set her basal rate to suck the insulin back out of her at this point!!!

And here's a visual of our very failed test today...

The range (green box) represents 80-200

So now I'm thinking we're going to change her daytime basal to 0.025 per hour starting tomorrow. And we'll start testing again on Thursday because it's the first day she doesn't have classes in the afternoon which require her to be fed and happy...

And this is not an atypical day...

Wednesday, June 1, 2011

Kickin' D Butt!

Oh yeah, once in awhile we get it right, and it feels pretty darn AMAZING!!! Last night I struggled with how to handle the fattiest dinner on the planet. It all started with a visit from my husband's aunt, who lives in Mexico. She stayed with his parents for a week, and made homemade tortillas (yes, with real lard).

Well, there's really only one meal you can eat with Aunt Raquel's homemade tortillas - Carnitas!
So last night, I dutifully looked up the carbs in homemade tortillas - 14g. per ounce. I weighed. I added a few extra grams for the homemade guacamole my husband and Sarah made together. I came up with a total of 70 grams. I did a combo bolus, knowing that the fat in the meal was going to cause a delay in the rise of her blood sugar. We did 40/60 for four hours (meaning she got 40% of her insulin immediately, and the rest spread over four hours). I logged this crazy fat meal so that I could save my success or failure for future review.

And I pretty much failed miserably. Three to four hours later she was at a very stubborn 240-260 range - when our goal is to keep her under 200 as much as possible. It took three corrections to get her back to her target. Stupid diabetes!

But wait. I had another chance! Sarah wanted the exact same meal again today. I put my analytical brain to work, and decided to give it another try, combining the pizza and ice cream theories. I multiplied the grams of carbs for the tortillas by 150%, and instead of bolusing for 70 grams, we bolused for 100 grams. We stuck with the 40/60 combo - but changed the duration to three hours instead of four.

Right now I am way beyond thrilled - like flying over the moon on my striped rocket ship happy! Like free food at Disneyland happy!
Because it's now five hours past dinner - and Sarah's peak? (Drum roll please................)


Take THAT diabetes!!! Kicked your butt all the way to next week. Whatcha gotta say now? Huh???