Independent doesn't mean alone...

I've heard of so many kids and teenagers who try to hide diabetes from their friends. They won't check or bolus in public, won't wear a pump, won't inject. My advice - give your friends the benefit of the doubt. They may surprise you.

Dealing with type 1 diabetes can be especially challenging for an active teenager. Sarah's currently in two shows right now, so has 2-3 hour rehearsals each evening, and 4-5 hours of show activities Friday through Sunday. Her insulin sensitivity is all over the map. Where she's perfect one day, the next is a real head-scratcher.

Last night I picked Sarah up from two and a half hours of rehearsing (in a dance heavy show) and we went straight to the adult community theater show she's in. On the way I'd picked up a sandwich so she could eat in the car. She checked, and was a little high, and bolused. I turned her basal down -70% for 6 hours to accommodate the show - our usual routine. I braided her hair, and left her to continue to prepare and be with her cast mates.

I went and sat at the back of the theater with my mom - both of us ushering for the show - and waited. A bit later, the actors began to trickle out for vocal warm-ups. My mom was anxious to see Sarah, and I pointed her out as soon as I saw her - accompanied by Andrew, her boyfriend/best friend. They had only begun to warm up, and by now everyone was on stage, when I saw them both hurriedly exit. Phone in hand, I stayed where I was. 

My 14 year old doesn't need her mom running back to check on her every five minutes. 

About 5 minutes later they emerged, still singing the warm-ups, and headed for the front of the stage. Catching my eye, Sarah holds up four fingers, and then nine fingers - 49. Then, she points at Andrew, points at herself, smiles and gives me a thumbs up. Message received "we got this mama".

I doubt there's a person in Sarah's cast who doesn't know she has diabetes - and it's not a big deal. They're a family and they take care of each other. If it wasn't Andrew, someone else would have watched her through her low - she has so many amazing friends. The trick? Sarah's been honest and open with her friends from the beginning. Some have been around long enough to remember when she was first diagnosed, and some haven't - but they're a family and they support each other.

Sarah (and Andrew) did an excellent job of managing her crazy blood sugar last night. She checked again before the show started and was 123. When the show was over she was 117. It doesn't get much better than that.

What it is, and isn't...

So here’s the thing. Diabetes is one of the most confusing and conflicting diseases on the planet. And as my daughter grows older, it becomes ever more difficult to explain - but here’s the old college try.

Diabetes is a big deal! Diabetes is dangerous and missteps with insulin or an illness can result in a trip to the ER or even a stay in the ICU. We must be careful to dose insulin correctly, even though there’s no absolute formula that will work. We check blood sugar 10+ times every day and have a diabetes alert dog who lets her know any time her blood sugar gets out of whack.

But………... that doesn't mean my daughter can’t fully participate in activities. It doesn't means she’s “sick” or needs to be coddled. It doesn't mean she won’t live as long (or probably much longer) than average. It doesn't mean she’s less of a student, or that she isn't healthy. My daughter is NOT fragile and neither is her health. She’s vibrant, energetic, talented, smart, beautiful and overall completely amazing. She has more energy than the average teenager, more drive. She has an excellent understanding of nutrition and the importance of regular exercise. She’s more empathetic to the plight of others because she understands what it’s like to be different and have more responsibility than any teenager should have to bear.

She must not be doing well because she has to watch for those lows carefully; i.e. “I knew a guy and he never had lows”.

But………..In reality, she has more frequent lows for one reason - because we strive to keep her blood sugar as close to a non-diabetics blood sugar as is safely possible. Show me a type 1 diabetic who NEVER has lows, and I’ll show you someone who most likely has an average blood sugar much higher than my daughters. And note that we haven’t had what we’d consider a “serious” low in over two years, and in the nearly four years since Sarah has had diabetes she’s had only three lows that required outside intervention (i.e. someone else helping her to treat) and she has never been hospitalized since her diagnosis.

What can and can’t she do like everyone else?

She can:

Participate in school activities

Dance, Act, Sing

Get amazing grades

Eat like a normal person and not like a rabbit (unless she’s in the mood for carrots, which are yummy)

Take trips (Yep, we’re even planning one to Japan this summer!)

Go to friends houses to hang out or even (gasp!) spend the night

Go on dates

Go to college

Have a career

Get married

Have amazing, healthy children (someday, like a LONG time from now… )

Smile, laugh, hug… did I mention Smile? She’s good at that one.

Light up a room with her crazy enthusiasm and wonderful attitude

Pretty much anything else you can think of, except…

She can’t:

Produce her own insulin

Uh… that’s all I got

Now, you may (or may not) have some misconceptions about what type 1 diabetes is and isn’t. So allow me to reassure you:

• She’s not “sick”, her pancreas simply isn’t producing insulin like it should.

• She’s not contagious, and having type 1 diabetes does not mean her children will inherit a bum pancreas.

• Type 1 diabetes is autoimmune, meaning her body did this to itself. She didn’t get diabetes from eating too much sugar, not exercising enough, taking vaccines, not taking vaccines, the flu shot, power lines, watching too much television, or drinking cows milk.

• She can have children, someday, if she wants them. And she will be a terrific mom.

• She monitors her blood sugar closely and often. She wears an insulin pump to deliver a constant flow of insulin and takes additional insulin for meals and snacks.

• She can eat whatever you put on the table, though at times, if her blood sugar is high or she simply doesn’t want to deal with the challenge that comes with a large dessert or high carb food, she may elect to abstain.

What you might not know.

• She has been carefully monitoring her nutrition since she was a child, so as an adult she will understand how to build healthful family meals.

• She understands the importance of regular exercise and activity, and knows first hand how much better the body processes insulin with a healthy amount of exercise.

• She listens to her body and knows when to ask for help.

• She has great empathy for the struggles of others.

You may be thinking that diabetes causes:

• Vision loss

• Poor circulation

• Limb amputations

• Heart disease

• High blood pressure

• Kidney failure

You’re incorrect. These complications are not caused by diabetes, but by consistent high blood sugar (hyperglycemia) over a long period of time. My daughter works very hard to keep her blood sugar in a healthy range. This is the reason that she sometimes has low blood sugar (hypoglycemia) and has to drink a juice or eat something to bring her blood sugar up. As long as she continues to take good care of her body and manage her blood sugar, she will live a long and healthy life, just like a person without diabetes.

Type 1 diabetics know the value of hard work and perseverance.  Did you know that type 1 diabetics play professional football (Jay Cutler), are professional race car drivers (Charlie Kimball), are famous actors (Mary Tyler Moore, Jean Smart), and are Supreme Court Justices (Justice Sonia Sotomayor)?

So yes, I still might be a little overprotective. I do watch her carefully and stay involved in her diabetes, because she doesn't have the choice to just let it go, even for a day. I stay nearby, or in close contact with friends, teachers, or anywhere she has activities, just in case. Not because she can’t handle the occasional low on her own, but because if she goes lower than usual, she still likes to have mom there for comfort until she feels better. Someday, in the not so distant future, she’ll have to take the responsibility fully on her own, and she will be ready when that day comes.

Thanks for listening.

Sarah's story - a teenager with diabetes (Age 14 edition)

Wow, three years ago I was blogging like a madwoman. Diabetes was all-consuming and it really was difficult to think about much else unless I vomited all my thoughts, fears, and experiences here.

Then: I had an elementary school student newly diagnosed with diabetes. I had nurse issues, child issues, teacher issues. We had scary lows, scary highs, and gray hairs popping out every which way. We had high ketones (still a little wary of vacation, as they always seem to happen there), and emergency room visits.

And while I know we will continue to have our struggles, Sarah will have sick days here and there, and diabetes will continue to throw curve balls our way on occasion, I feel like we've made it to that point where I never though we'd be. To a place where diabetes is in the background of our lives.

Don't get me wrong. Sarah still has diabetes. She still counts every single carbohydrate she puts into her mouth. She still checks her blood sugar an average of 12 times every day. She makes choices to not eat foods she knows will make her feel icky later. She has highs (hit 300 on Halloween - and she didn't even eat candy!). She has lows, but our master low catcher, Scouty Wompus (her amazing diabetes alert dog) lets her know WAY before she's low enough to feel it - and as a result she's begun to look forward to the lows because it's so much fun to reward Scout and watch him get all crazy excited.

So what's Sarah up to?

She's a high school student - getting excellent grades (A's and B's). She loves taking Scout to school. She even started taking him to P.E. all the time, and lunch on occasion (we'd originally planned for him to stay in a kennel during P.E. and lunch). She enjoys sitting on the grass with him during lunch, and she says he helps motivate her to run during P.E.. Of course, there was that one time he stopped during the run to poop, but that's all part of having a diabetes alert dog.

Sarah loves school. She's in an amazing choir with a fantastic choir teacher. Her language arts teacher is young and funny and she's rediscovered a love of literature this year. P.E. is super fun because she's the only one with a goofy yellow Labrador participating in each activity. Health is entertaining because she generally knows more than the teacher (ask her about the time a child told the class he'd been "dissected"). And of course she enjoys her theater class, and can't wait until auditions for the spring musical.

She's still very involved in community musical theater. Sarah has been involved in theater since she was 7 years old, so over half of her life now. She recently had the opportunity to play the part of Ariel in a local kids production of The Little Mermaid - produced by Musical Mayhem Productions. It was a fantastic production and so many kids wanted her autograph and to take pictures with her after each show that there were long lines! And diabetes was never a problem as Sarah did an amazing job of eating well, checking bg regularly, and keeping on top of her health to ensure she was fit to perform.

Without those pesky lows (Scout generally warns her in the low 80's), her A1c is slightly higher than it's been over the last couple of years, but still in the high 6's, so we're happy with that. 

Last month we traveled to Southern CA for an amazing conference on diabetes alert dogs. Sarah, Scout and I had a BLAST. It was a weekend of learning and fun, and we made new friends and reconnected with old friends. Sarah even got to share some of her school experience with parents who are new to the DAD world and still trying to figure out what taking a DAD to school will really be like.

And here we are. We've made it through October, and we're in November - Diabetes Awareness Month. I'm aware that Sarah is probably unusual for a teenager. She's easy-going about diabetes. She's actually kind of proud that she has something that makes her a little different. She and I have always been close, so we don't generally get into arguments, and Sarah has always had a desire to be healthy so she really is invested in taking care of herself.

If I have any advice for other parents with younger children who will eventually be teenagers, it would be this:

• Teach them the basics, but don't overwhelm them. They don't need to be threatened with the worst consequences. Let them be kids.
• Only let them take on the tasks they are truly ready for. Don't force them to check, count carbs, bolus and change pump sites when they're home - they do this all day at school. Let home be a place where they can take a break from diabetes (i.e., you do it for them as long as they'll let you)
• Try not to stress. I really believe our children can feel our stress and they generally react poorly to it. Yes, diabetes can be scary, but if we are calm and keep it real and simple, they can be calm about it too.
• Ask for help when you need it, and encourage your child to do the same.

Having a teenager with diabetes does not have to be the nightmare that you've heard about. For some it will be, absolutely, because all kids are different and some will be more difficult than others. But don't let it be a self-fulfilling prophesy by assuming it will be horrible. Your child can probably read your fears and emotions better than you think. So my advise is to keep it positive as much as possible. Try to find the good in every day, and where something related to diabetes offers a fun time, or a special experience - take it.

Where I attempt to make sense of T1...

The most difficult aspect of type 1 diabetes to explain is why it’s so all consuming. It really is. Even though my daughter has a busy, fulfilling life, we’re always aware that we’re just a 

1. Illness, 

2. Pump failure, 

3. Bolus failure, 

4. Bad insulin, 

5. Pump site failure, 

6. The million other things that affect blood sugar 

away from a trip to the ER or even the ICU.

And here’s the best way I can think of to explain it.

First, know this about blood sugar. If you don’t have diabetes, your blood sugar most likely sits at a comfortable range somewhere between 80-120 all day long. No matter what you do or eat. You could indulge in a whole cake (think Matlida), and YOUR pancreas would distribute the perfect amount of insulin to keep up with your intake of carbohydrates as easily as a hare keeps up with a tortoise. Your pancreas could hop circles around your food intake while crocheting crocodile slippers and not miss a beat. Your pancreas is on perfect cruise control, doing exactly what it needs to do to keep your blood sugar in perfect harmony with your body’s needs. 

However, if you DO have type 1 diabetes, there is no cruise control because your pancreas, for purposes of making insulin to keep up with…life, is a glob of useless cells. And your throttle is inconsistent, and your gas and brake are completely psychotic. People still ask me sometimes what my daughter’s fasting glucose or base blood sugar is. 

Important note: People with type 1 diabetes don’t have a base blood sugar. Let me say that again… There’s no such thing as a “fasting glucose”, or a “normal”. There is no normal. Why? Because for someone with type 1, blood sugar is completely a product of human intervention, 100% of the time.

When people state that insulin is life support, that sounds pretty melodramatic,  –but, well, it really is! I mean, it’s not like a ventilator where flipping a switch could result in near instant death, but it’s still what keeps people with type 1 diabetes alive day after day. And it’s not at all like other required medication, because a person with type 1 needs it all the time. It’s not just about food. Every body needs insulin to keep going, like you need air to keep going. Just as you breathe in oxygen every few seconds, a person with type 1 diabetes has a constant need for insulin – and the fun part is, the amount of insulin needed changes constantly depending on activity, exercise, stress, food, state of mind, time of the month, illness (that’s a biggie), etc.

Type 1 requires you to be (I’m gonna start making up words now, ok?) proreactive. You can’t be completely proactive with type 1 diabetes, because there’s no way to 100% accurately predict how her body will respond to the amount of synthetic insulin working through it. So you are also constantly reacting to changes in blood sugar.

And you can only proreact when you have information. Information which comes in the form of about 10-15 drops of blood every day that result from stabbing a sharp object into a finger and feeding the meter (Ours is named Audrey II – anyone get the reference?).  

Type 1 diabetes is intense, and perfection is completely elusive. And when you see someone with type 1 diabetes who is doing amazing things, who is full of life and vigor, and who is smiling and happy and healthy – that is the product of a BOATLOAD of work that person (or their parents, or both) put into staying healthy – 24 hours a day, no… 1,440 minutes a day of work. 

That's why people with type 1 are so  awesome, because they manage life while simultaneously managing a very challenging health condition. And most of them make it look easy. Cause they're just amazingly awesome like that!

Unpredictability, thy name is diabetes...

I'm nervous.

Each night I set alarms to check on my little girl. I wake on my own more than once and put a hand on her forehead, just to make sure it isn't clammy. I methodically check her blood sugar meter daily to make sure she's checking as much as she should (she still isn't checking before PE, I lost that battle), and to make minor adjustments to her insulin regimen.

The truth is, she's doing amazing. Diabetes wouldn't BE diabetes without highs and lows. But we haven't seen anything over 250 or under about 75 in weeks, and it's kinda creeping me out.

We've been here before, a lot really. We'll have spectacular weeks, months. Everything works great! Right up until the moment it doesn't.

That's the crux of diabetes. Most of the time it looks easy, and sometimes it actually is. But we're always walking a tightrope. We get better at it, sure. But we can't always be prepared for which direction the next gust of wind will hit. 

Last December we were having a great time, spent the day in Disneyland having tons of fun. Blood sugar was perfectly fine. Scout was alerting like a champion. At some point, Sarah started to feel off, and within a few hours she was sick. Well, not sick, but SICK!!

I'll paint a picture. My beautiful girl who had been smiling and laughing and having fun all day was suddenly puking. And then she was lying on the floor sweating. She literally had to be carried because she didn't have the strength to move. All this from what? A bug? Something she ate? We still have no idea. But she went from healthy to the absolute opposite of healthy so fast it left my head spinning.

And that's why, even when everything seems perfect, I can't forget that it can all change in a heartbeat. I am not even a worrier, and I worry. I'm not a fretter, but I fret. I'm a mom who knows that this tightrope is only as strong as circumstances allow. I know hard times are ahead, I just don't know when they'll hit, or what the catalyst will be (if any, it's diabetes after all - and it doesn't really need a reason to be a poophead). 

And I guess that's really what keeps a small part of my brain in a near constant tissy, the knowing without a shadow of a doubt that we will see scary highs, scary lows, ketones, etc. Diabetes and the challenges it brings are inevitable. 

It's the one thing I can't do nearly enough to protect my daughter from. And I hate that there's anything in this world I can't protect her from. 

I'm mom. My job is to keep her safe and healthy. How can I do that with a stupid disease that doesn't play fair? 

The world isn't fair. Yes, world - I got the message. Truly. I did.

Diabetes is not the boss of us

Sometimes you just have to make a decision that isn't dominated by diabetes. Like when your 13 year old wants to go to a favorite restaurant that you haven't been to in a year BECAUSE of diabetes. Diabetes is not supposed to have so much control over our lives, but sometimes out of sheer necessity, and requirement for sleep, we let it have more control than it deserves. 

I'm sure I'll hear from those who agree that people with diabetes can eat anything, and those who are horrified that I periodically dose my daughter for near 200g of carbs for a single meal. Someday she will be grown and she can make her own decisions about what to eat, and I MUST prepare her not just for chicken breasts, salads, and rolls - but for Chinese, Mexican, and desserts. How else will she learn how to keep her bg from crashing and then spiking into the stratosphere if we don't work through it together.

And for crying out loud, she's a 13 year old kid and I refuse to allow diabetes to rule her life. Got that diabetes? You. Will. Not. Win!

What is the right age for a diabetes alert dog?

Someone recently asked a question about what is the right age for a child to have a diabetes alert dog (and I suppose this would be accurate for many types of service dogs), and what is the right age for a child to take a dog to school.

I imagine you could ask 10 people and get 10 different answers. This is a touchy subject, but I’ll give you my opinion and experience.

First, I think that most kids before high school would have a difficult time handling a dog in school full time. Sarah began taking her dog part time at the end of junior high, but he only went 2-3 days per week, and for only a portion of the day. And she had a back-up to keep Scout on days he didn’t go to school or to pick him up if needed. She has no trouble taking him to high school, and so far it’s been a positive experience for both of them. She’s outgoing and theatrical anyway, so having a DAD draw attention to her is not an issue. We have a full size crate at school in a secure and supervised location, and Scout goes into his crate during PE and lunch.

I do think that DAD’s are fine for younger children where the parent is the handler, and the family already has a good grasp of diabetes management AND a real understanding of how much work having a DAD really is.

Absolutely the most important thing is the child (and I’m talking about DAD’s for older children/teens, not small kids). The child has got to be fully invested and really understand what having a DAD means. The very best thing we did for Sarah was to have her volunteer with Guide Dogs for the Blind for over a year before we brought Scout home. She got to experience puppy sitting dogs who were more difficult to handle than a fully trained DAD. She kept the dogs overnight, took them to the grocery store, fed them, picked up their poop, took them on walks and went through grooming and continuing training. I figured if she could do that for a year and not get tired of handling smelly poop and having a dog attached to her, she was ready to have a DAD. But it had to ultimately be her choice because SHE is the handler, and having a DAD is a 24/7 responsibility. Of course we support and help her, but if Scout gets a tummy ache and vomits during Geography – Sarah’s going to be cleaning. And when she feels gross because her bg is high or low, she still has to be aware of Scout and make sure she takes his needs into account even while she’s tending to her own needs. That’s a HUGE amount of responsibility to put on a kid. 

It’s also critical that the child is invested in their own care. If Sarah doesn’t check and reward Scout, he’s going to become bored with the “finding the high/low” game. If she checks and doesn’t correct, or cheats on food often and ends up with constant soaring blood sugars, Scout is going to be stuck in high bg land so long it will become normal. So it’s also critical that the child has the best control possible. A DAD will improve your control only in that the dog will let you know when you’re going high/low and give you an opportunity to act. But a DAD can’t provide greater control if the child isn’t putting in the effort. It’s totally normal for teens to rebel and have crazy blood sugars; but this can be hard on a DAD and probably isn’t the best situation for continued success.

Having a DAD is a choice, like deciding to use an insulin pump instead of injections, or getting a CGM. As much as Sarah’s DAD has changed and improved her diabetes management and given us all an extra sense of security, we still made a choice to take on this level of responsibility and to deal with everything that comes with having a DAD. Sarah continues to make that choice every day, and during the day when he alerts, she makes choices which will determine whether he’ll continue to alert tomorrow and the next day. If she stops being fully engaged and invested in him, he may stop being fully engaged and invested with her. 

A good relationship with an alert dog requires a mutual partnership, build on mutual respect and love.