Friday, December 30, 2011

Lessons learned at the happiest place on earth

Today was our third of four full days of Disneyland fun on our short post Christmas vacation. We've been having a blast. The kids are getting along famously, and our pal diabetes has even been mostly well behaved.


Tonight we had a fun dinner at the Rainforest Cafe, which does NOT have a nutritional menu. Sarah ate a whole kids pizza, a tortilla from my husbands plate, a bit of salmon from my plate, and her sisters garlic mashed potatoes. I guessed at the carbs because, really, what was my other choice?

After dinner my hubby went back to get his jacket and asked if he could leave the big backpack in the car as it was getting late and we were only going to stay a bit longer anyway. I said sure, I was wearing a fanny pack which included a one touch mini, a tube of frosting, and a packet of candy corn.

So after dropping things at the car and going back into both parks for a few more rides, we decided to end the night at Pirates of the Caribbean - everyone's favorite ride. And since the lines has been crazy, one we hadn't been on yet.

We get just past the first dip on this very long ride when it happens, "mommy, I feel low". So I pull out the test kit, open it up, and realize I can't see a darn thing. Nope, no backlight on the one touch mini. So my husband sees my problem and lights my way with his cell phone (sorry folks behind us, medical emergency here!). The result? 84. Not that bad but she feels like she's dropping. I pull out the candy corn. It doesn't taste right to her. Okay... How about a bit of her sisters cotton candy? Nope, she doesn't want that either. Okay kid, your low blood sugar moment in the middle of a ride is not the time to start getting ultra picky!!!

So how about the frosting? Nope, she doesn't want it. I decide that at 84 we can probably make it to the end of the ride and then deal. We get past the bombs, the women for sale, the drunks, the fire, and are just about out... When the ride comes to a complete stop. So we wait...and wait...and wait. I decide to test her again after about 5 minutes. She's 76. Looks like she probably is dropping fast. I'm gritting my teeth and she's starting to lean. We wait. I beg her to eat some candy corn. Nope. We wait. FINALLY the ride moves again and we get to the blessed end!!!

We still have an issue. A low, and dropping, blood sugar and nothing she wants to treat it with. We walk around the corner heading out towards the main gate and pass a coffee stand. Eureka! We run in and search through - I kid you not - piles of various types of fake sweetener until my older daughter finds actual sugar! We all stand there while Sarah tears open the packet and proceeds to literally dump sugar into her mouth. People are looking, "eat it all Sarah". People probably think I'm insane, "do you want another packet Sarah?".

The night ended fine. We made it to the car where Sarah downed 15g of oatmeal squares cereal and the night was saved.


- Posted using BlogPress from my iPhone

Location:Anaheim, CA

Monday, December 19, 2011

And the winner is.....

Drum roll please...









Please send me your addresses and I will mail these little treasures out tomorrow.

Thanks for playing!

Sunday, December 18, 2011

TightropeTango little girls jewelry contest!

Sarah (age 12) is cleaning her room and thought it would be nice to give the jewelry she's outgrown away to two lucky little ladies who know what it's like to get poked and pricked all day long. We all know that diabetes is expensive, and that can make Christmas giving a real challenge. Would your little lady like to win one of these sets of cute bracelets and necklaces? These have been enjoyed before, but are ready for a new home with your little girl.

Sarah's treasures - Group 1

Sarah's treasures - Group 2

So between today and Monday at 6pm (PST) we will be accepting entries. If your little girl has type 1 diabetes, is between the ages of 4 and 10, and would like to win one of these cute sets of jewelry, send the following information to t1tightropetango@gmail.com.

  • Parents name
  • Child's name (first is fine)
  • Parent's Email address
  • Child's age
  • Which group of treasures you like the best
  • Your permission to display your name and entry information (except email address of course) on a future blog post.
  • A short paragraph, poem, and/or photo for Sarah to read/look at. Miss Sarah will review all the entries and decide where to send her treasures. We will mail them out on Tuesday, which will (hopefully) get them to you by Christmas!
Please feel free to share, and good luck!!


Saturday, December 17, 2011

Type 1 diabetes for dummies...

Originally posted in December, 2011 - updated 4/30/2012

The fun of diabetes is you never really know what the next day, meal, or activity is going to bring. One day everything is working just peachy, and the next day nothing works right. You can drive yourself nutso trying to figure out why, or you can just accept that diabetes has a mind of its own. My daughter has had some incredible weeks of near perfect numbers. Then she'll go into the next week and have blood sugar in the 400's, or the 40's - and we didn't do anything different.

That's the nature of type 1 diabetes. And it's the absolute hardest thing to explain to someone who doesn't live with it every day. We are conditioned to believe that illnesses, from colds to flu to chronic illnesses like asthma, can be resolved with a few pills, drinking some nasty liquid, or sucking medicine through an inhaler periodically. So most people assume that type 1 diabetes is essentially the same, the only real difference is the delivery method - shots or an insulin pump. What's so hard about that?

I've had more than one person say to me, when I mention that my child wears an insulin pump, "oh good, so she'll be fine then!" Uhhh. No. Soooooooo much no.

The pump is only a delivery system, it doesn't do a thing without our direction. And do you know what a normal pancreas does? It delivers insulin when you need it and as much as you need. It anticipates when you'll need less, like during exercise for most people. It anticipates when you'll need more, like for Sarah when she's sleeping.

A person with type 1 diabetes has a pancreas that fails to produce insulin. It's broken. It just sits there spewing out other chemicals, but not doing diddly squat to regulate blood sugar.

So what, your blood sugar isn't regulated - what does that mean?

I'll admit, I suck at remembering to take my own medicine. I take a pill daily (ahem, usually), but if I forget, nothing too serious happens. The pill regulates my thyroid, but if I forget I don't notice any difference in my body, and make up for it later.

Diabetes is NOTHING like this. If a person with type 1 diabetes forgets to take insulin for a meal - or if their pump isn't working, or the insulin is bad (ineffective) or if they miscalculated the carbohydrates, they could very well end up spending that night in the hospital. If the pump stops functioning, they could end up with diabetic ketoacidosis, and a stay in the Intensive Care Unit within just a few hours. (Note, this can also happen from a simple flu, food poisoning, or anything else that disrupts eating or causes vomiting)

And insulin isn't just needed for food, as many people assume. There are two types of insulin infusion (for a person using an insulin pump); basal insulin is small increments of insulin sent into the body every few minutes through the day, and bolus insulin is the insulin taken for food. The amount your body needs changes dramatically through the day, and with activity, and with weather, and with green underwear. A person might have five or six basal rates through the day and night. Sarah's basal rate (the units of insulin per hour) range from 0.075 to 0.6. So at a certain time of day she's taking nearly 10x the insulin she takes during another part of the day.

Weird huh?

And does the pump automatically adjust for the amount she needs? NO! We have to adjust it ourselves. The pump just follows our instructions.

Okay, so what?

Healthy blood sugar ranges vary. Most consider under 70mg/dL low (meaning the person needs to get some sugar into their system, usually by eating or drinking a fast acting carbohydrate), and over 200mg/dL high (meaning there is too much sugar in the blood and the person needs more insulin to bring it down). A normal blood sugar for someone without diabetes is probably around 70mg/dL-130mg/dL. I've tested myself quite a few times, and I've always been within this range.

If blood sugar remains low for too long, a potentially fatal condition called hypoglycemia develops. This is the reason most parents of kids with diabetes walk around with toothpicks holding up their eyelids. Because the only way to be sure hypoglycemia is not occurring, is to test the blood during the sleeping hours, especially for kids who don't wake up when they have symptoms of low blood sugar. Symptoms may include lethargy, impaired mental functioning; irritability; shaking, twitching, weakness in arm and leg muscles; pale complexion; sweating; paranoid or aggressive mentality and loss of consciousness. Brain damage and death is even possible if the episode isn't corrected soon enough. Thus, toothpicks.

If blood sugar remains high for too long, diabetic ketoacidosis can occur. The symptoms of an episode of diabetic ketoacidosis usually evolve over a period of about 24 hours (but can be significantly less, especially for those using an insulin pump). Symptoms are nausea and vomiting, pronounced thirst, excessive urine production and abdominal pain. Severe DKA can often mimic the symptoms of a flu, and sometimes accompanies a flu. A simple flu virus often leads to hospitalization for a person with type 1 diabetes. This is why I start to sound like a raving lunatic when Sarah's blood sugar is high for an extended period of time.

So, my point is..... that keeping blood sugar in any sort of healthy range is very difficult. A single gram of carbohydrates will raise Sarah's blood sugar about 4mg/dL. In a single, normal day, her blood sugar ranges from around 80-220mg/dL. A normal meal is about 60 grams of carbohydrates which, without insulin, would bring her blood sugar from, say 100mg/dL to 340mg/dL. 340mg/dL is more than enough to start DKA if we don't get it back down. And the higher she is, the more resistant her body becomes to the insulin, and she might needs twice as much to bring her blood sugar back into a healthy range. Oh, and she's going to start feeling like crap forthwith. Really.

Oh... and let's not forget that every dose of insulin is essentially an educated guess. Yep. There's no magic formula. Every single time my child eats and we give her insulin, we really don't know where she'll end up. We know where her blood sugar ends up, on average. But each time is basically a crapshoot.

And you wonder why my brain is stuck in diabetes mode much of the time...

But why should you care? I mean, it's genetic or something, right?

Not so much.

Sometimes type 1 diabetes does run in families, and sometimes it's completely random. It used to be called juvenile diabetes, which was really dumb because it doesn't just affect juveniles, and it certainly doesn't magically disappear when you're no longer a juvenile. Whether you're a month old, ten years old, 25 years old, 50 years old, or 75 years old, you can be diagnosed with type 1 diabetes. Sometimes it comes on very suddenly, sometimes over a period of months or years.

You should know the symptoms, because chances are you will know someone who is diagnosed with type 1 diabetes, and if you know what to look for, you can save a life. People often die from undiagnosed diabetes, because severe DKA can look a lot like a bad flu. And really, who wants to head for the hospital when we think we just have a flu?

So my hope is that some folks (besides my friends in the toothpick club who know this as well as I do) will read this, learn something, and pass a little truth on. When people understand type 1 diabetes, then kids like mine are understood, treated with more respect, and provided with the tools and opportunities they need to be the best they can be.

And if you made it this far... thank you!!!

In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com







Wednesday, December 14, 2011

This ain't no honeymoon, folks...

When Sarah was first diagnosed with diabetes, we heard a lot about this "honeymoon" period. Some people applauded it, because when the pancreas is doing even SOME of the work, we as substitute pancreases do a little less. We have a cushion to fall back on, making the highs and lows somewhat less dramatic. Others cursed the honeymoon as a period when blood sugar can be completely unpredictable.

"Why hello Mr. Pancreas, so nice of you to make an appearance!"

I can tell you what a honeymoon period is not...
It's not beautiful sunsets, or candlelit dinners. It's not a stroll on the beach, with the sand between your toes.

So why the hell is it called a honeymoon anyway? Maybe it should be renamed.

  • Confused Pancreas period
  • Insulin Inconsistency period
  • Peculiar pancreatic activity period
  • Watch out for falling blood sugar period
  • Don't get used to these mellow numbers period
  • Developing bad habits that will bite you in the ass later period


Blood sugars during the "honeymoon period" might look a little bit like this... And you're thinking... this isn't so bad. I can totally keep these numbers in range!

And then you and your pancreas have a final falling out... and they look more like this:


It kind of feels like you failed when you look at this chart. Okay... I felt like a complete failure. How could my child have blood sugars soaring into the 400's? We are diligent, vigilant, and totally on top of her site changes, her carb counting, and regular testing. And still!

I keep telling myself that this is temporary. We will get her numbers back into the type of control we're used to, where the world makes sense again. We're not quite there yet, but are well on our way. Today's numbers looked like this:
Far from perfect, but a most definite step in the right direction.

We can do this.

You can do this.

So what do you think? Should we rename this or what?

In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com

Saturday, October 22, 2011

Shout or whisper...

One of the first items I purchased after Sarah was diagnosed with diabetes, was a charm bracelet. It's one of those cute Italian charm bracelets with lots of space for fun charms that represent Sarah. Oh... and it has a medical alert symbol on one of the charms. And as cute as it is, it was a mistake to think it would serve the purpose of a medical alert bracelet.

1. It comes off far too easily.
2. It pinches her arms a bit, and is a little heavy, so she took it off within a few days.
3. It pretty much just looks like a traditional Italian charm bracelet.

The purpose of a medical alert bracelet is to ensure that if you are not able to speak for yourself and tell the paramedics or doctors about a serious medical condition, that they'll be able to figure it out without your help.

Paramedics are trained to look for medical alert bracelets.
Sarah's bracelet
If they're even looking in the first place, you are probably unconscious, and they're trying to save your life - Gulp! If you can't speak, you want your choice in medical alert jewelry to SHOUT for you. "Hey Mr. Paramedic! This person has [insert illness here]!".

The truth is, a medical alert bracelet is like insurance in case of emergency. Most people probably don't end up using it, but it's there if needed. For my fellow mama's with kids with diabetes, there are few times where our kids are out of our sight. Sarah's either with me, or with people who already know she has diabetes, 24 hours per day. Even if she had a severe low at school, at theater practice, at a friends house, the first thing they would tell paramedics is that she's a type 1 diabetic - I have no doubt.

But... (and I hate even writing this, but it needs to be stated) what if she was with me or a friend, and was in a car accident? What if I, or her friend, were not conscious? What if she was unconscious? What if she was unconscious because the stress or adrenaline or circumstances resulted in a dangerously low blood sugar?What if the paramedic who arrived didn't see that she had a medical alert bracelet identifying her as a type 1 diabetic and didn't even know she needed an immediate shot of glucagon?

I love the cute medical jewelry out there, I really do. And I think if your child likes it, and it gets them to wear it, awesome! But keep in mind that the goal of the jewerly is to be seen in case of a serious emergency. What if they're 95% likely to notice a traditional bracelet, but only 70% likely to notice a beaded bracelet. What if they're only 25% likely to notice a woven bracelet?

I don't know why, but it bothers me to think that there's even a CHANCE that a paramedic might overlook Sarah's bracelet, or any other child with diabetes or other illness. So I just urge you to look at your child's jewelry from a paramedics perspective. Is it obviously a medical alert piece? What if it was turned around, would the paramedic know to check the other side by looking at the visable portion?

That's all I wanted to say. This has been bothering me all week since I saw a picture of a bracelet which was totally adorable, but only had one small bead with a medical alert symbol. Please just think about this, and consider whether at that most serious moment, when a paramedics actions could mean the difference between life and death - will your bracelet

SHOUT

or whisper...




In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com

Sunday, October 2, 2011

Anger Management

I'm really not very good at being angry, but today I feel compelled to write about anger because my friends are hurting.

I know how it feels to feel so scared for a child. That moment when it hits you that your baby, who you cradled, changed diapers, snuggled with, and love with all your heart and soul - has a disease that it incurable and only moderately controllable. A disease that can result in serious complications, illness, and death. That you have the responsibility to not only raise your child to be a good person, a good student, a happy individual, but to also to be a full time Endocrinologist.

Your baby is your superhero, and so their disease becomes the villain in your story. And in our world, our disease is the most important - well, because it's the one attacking our baby!

Sometimes we forget that type 1 diabetes is not the only disease. I read a blog post a week or so ago from a mom who lost her poor little guy to cancer at age 4. Heartbreaking! She couldn't understand why the whole world wasn't rising up to raise funds and find a cure for this disease which primarily kills toddlers and young children. Well, I admit, I haven't given a dime towards this specific cancer. In fact, until I read her blog, I didn't know it existed. And I feel tremendously for this mother. But the truth is, I don't have the funds, time, or energy to support every worthy cause. Does that make it less worthy? No, absolutely not.

But isn't that kind of what we D-Parents expect? That all those people out there, most of whom don't know a soul with type 1 diabetes, will just lay down their worldly goods and follow our superhero straight into the volcano? We expect it because our children don't deserve a disease like type 1 diabetes. They deserve to be healthy and happy and loved and not have a care in the world. But we don't live in a fairytale land, we live in the land of reality - where children and adults are afflicted with diseases which they have some, little, or no control over.

Type 1 and type 2 diabetes are not the same thing - everyone agrees on that point. But they are related in that the treatments are often similar, with similar consequences. Many type 2 diabetics lose a good portion of their insulin producing cells as well. Just because they don't lose all of them doesn't lessen the severity of their disease. In fact, many type 2 diabetes have extreme insulin resistance, which can make it more difficult to manage blood sugar. And guess what? Type 2 diabetes is NOT exclusively a lifestyle disease. I think at least half the type 2 diabetics I know are young and fit. They didn't do anything to deserve diabetes. My own grandfather had type 2 diabetes, as did both of his parents. He was insulin dependent, and lived to a ripe old age while his parents died in their 50's. His diabetes was primarily genetic. Grandpa was always worried about his son and grandchildren, hoping his genes wouldn't condemn them to a life of shots and blood sugar checks. I'm kind of glad he didn't live to see Sarah diagnosed with type 1 diabetes, as I think that would have broken his heart.

Okay... off the ramble. My point is, we're all in this together. And as our world becomes closer through the internet and groups that co-mingle the various types of diabetes, we need to be sensitive and non-judgemental. Yes, your child absolutely didn't do anything to deserve diabetes. But that adult you just dismissed in your head because she's type 2 - does she deserve it any more? And when a child dies from anything it's absolutely tragic. Is it less tragic when a mother dies, leaving children behind? Or when a beloved grandparent dies before their time?

It's so easy to get wrapped up in our own lives and in this disease. Type 1 diabetes turns ordinary moms and dads into ODC maniacs as we struggle to manage this disease. Deaths happen. And no one can tell you how long you or your child will be on this earth - but try not to dwell in the land of what if - it'll make you crazy. Enjoy your life, live the best you can, and respect others for their opinions and what they're going through. If you're angry, let your anger drive you to positive ends. Get out and fundraise. Be an advocate. Mentor a family who doesn't have the resources you do to help them have a better outcome. Hug your child. Weed your garden. Whatever it takes. But before you allow angry words to pass your lips, or fingers, think about why and where you're directing it. Don't hurt someone who is already hurting, struggling with grief, or dealing with challenges you don't understand.

I think I'll go have a cup of tea, hug my child, and sit on my front porch swing soaking up some needed vitamin D now.

Saturday, October 1, 2011

My baby is growing up!

This is the week my baby girl turned 12. I can hardly believe it. It seems like only yesterday she looked like this:
If you don't already know, Sarah is my youngest baby. Her dad and I have been married for nearly 23 years. Her older siblings are adults now, ages 22 and 20. And as hard as it was to see them grow up, I think it's more difficult with Sarah because she's the youngest and my last "baby".

Right now she's in the middle between being a little girl and becoming a young woman. It's hard for me to accept that in few short years, she won't need me so much anymore. I've gotten used to her being my "appendage". She's always been a mama's girl. She and I have been sushi pals since she was 5 and discovered that she loves sushi better than just about anything else (while the rest of the family retches at the thought). She is a musical theater fanatic, just like her mom (only she can actually carry a tune). She has an amazing attitude about dealing with her diabetes; after 18 months it's mostly routine for her and I don't think she thinks about it very much anymore except when she doesn't feel well or when it's time to eat.

And I think one of my favorite things about Sarah is that she takes whatever life throws her way and makes it the best it can be. I won't say she makes lemonaid because she thinks lemonaid is gross, but she goes through life with a smile and a song and doesn't let anything get her down for long. She lives for fun and somehow manages to turn most anything into a fun time.

Tonight I am inspired to write this because today was such a good day. Honestly, I started out kind of grumpy, mostly due to lack of sleep. I have a lot going on at work which I think is taxing my brain, and Sarah's had a few nights of wonky blood sugar so I've been either staying up or setting multiple alarms.

So this morning started out with Sarah going to her theater class. She was also grouchy in the morning because she felt more like staying in, but once she got there she seemed to have a marvelous time. I'll tell you a secret... I left. Yep. I dropped her off, with her bag containing juice, crackers, a test kit and glucagon, and came back and retrieved her three hours later. She was smiling. Today was vocal practice, and even though she wasn't initially thrilled about the part she got in her latest musical, she LOVES to sing and it made her happy.

After practice we went to Bel Air for some sorely needed supplies for her birthday party (primarily vegetables for snacks, and candles for the cake), then to Baskin Robbins so she could pick out an ice cream cake. At home, she and I did some last minute touch-ups on her bedroom (which is closet sized and usually a bit messy) while she sang "Come to My Garden" multiple times as instructed by her voice teacher. Her grandparents, uncle, cousin, and friends Kelsey and Miranda came over to help her celebrate. She had a blast opening gifts, which were primarily clothes and lots and lots of glittery goodness and beautifying thingamajobers.

After the relatives went home, she spent a long time in the front yard swinging, jumping, running, and basically just having a great time. She and her friends made some crafts, watched a stupid movie (with the full intention of making fun of it the whole time, which drove my husband a little mad), and then decided to act and sing (which they're doing right now as I write this).

She had a good day. Happy birthday baby girl. I love you a bazillion!!!

Tuesday, September 27, 2011

Coping with pre-teen diabetes insanity

Today is Sarah's 12th birthday. She's growing up! She's become such a unique young lady. She's fun and serious and comical and silly and determined and awesome. I am so proud of the young lady she's becoming!

Today we spent half the day traveling to Roseville for a doctors appointment. It was a group appointment, so nothing critical. Even though it was her birthday, Sarah was determined not to miss it. In this appointment, several families with children with diabetes ages 10-12 come at the same time. The kids are sent into one room, the parents to another. If I learned one thing from this appointment, it is that I have a spectacularly awesome kid and I am BEYOND thankful.

Raising a child with diabetes is hard, and it gets harder as they become teenagers and begin to want more independence. And ya know what? These pre-teens are sneaky little buggars! It's not uncommon for kids to begin to pull away and find ways to hide their blood sugar from their parents. It's extra important that we parents remain vigilant and involved.

A parent told me today that her daughter, who is the same age as Sarah, has become amazingly sneaky about hiding her blood sugars - and the kid has been in DKA (diabetic ketoacidosis) three times this year. Among other tricks, she adds water to her blood drop (which apparantly reduces the number), and she's been known to test her little sisters and show her mom their completely perfect numbers rather than test herself. Other kids simply lie about their numbers, and I've heard of some using the solution that comes with the meter and always shows a nice number.

Even Sarah is not completely immune. Just today she told me she didn't test for lunch, because she didn't think she'd have enough time to test and eat (apparently she was doing something with a teacher during lunch today). And last week she ate a few pieces of chocolate during a class (mini candy bars) and didn't bolus. I'm sure you know where that ended up!

So I thought I'd take this opportunity to at least write down how we are handing this, in the hopes that it might help someone else who has a pre-pre teen.

  1. Don't react. That is really the most important rule. No seriously. Don't react. If the number is 40, then that's what it is. Keep a smile on your face and hand over a box of juice. If the number is 400, then that's what it is. Keep a smile on your face and give/supervise a correction and a glass of water. Kids hate it when we react to their blood sugar, they take it personally. It's like getting a bad report card ten times a day!
  2. Don't immediately ask your child for their numbers after school. First ask them how their day was. What did they learn in science class? And maybe tell them a little about your day or something interesting that happened. Then, if you must ask, ask gently (refer to rule #1 above). Better yet, just have an understanding that the meter goes on the kitchen counter in the evening - then, when your child is off doing homework or playing outside, just run through it and look at the days numbers. Kids don't like to think/hear/talk about their diabetes, so the more you can reduce the need, the better.
  3. Encourage positive choices, but don't restrict. The best way to ensure a rebellion is to make something off limits. One thing we do to make things a little easier is to have dessert early, sometimes after lunch, on weekends. It's a lot easier to manage dessert bg's between lunch and dinner than close to bedtime. Also, I always tell Sarah she can have whatever she wants, as long as she takes insulin for it. So if someone brings in cupcakes to school, fine, no problem. She can have that without having to ask or feeling guilty about it later.
  4. Give 'em a break. If your child wants you to test them and make all the decisions in the evening, then do it for them. They've been managing something no kid should have to manage, all day long.
  5. Talk about it when it's appropriate. I've found that sometimes Sarah doesn't want to hear about diabetes at all, and other times she's more than happy to discuss her diabetes, how to manage it better, how we're adjusting her IC ratios, or whatever. Don't do it in front of friends, or even as a family group. Find a time when they're in a receptive good mood, like listening to music on a car ride. Just turn it down a notch and strike up a conversation. Make it conversational, not accusatory or lecturing.
  6. Meet other kids. Kids with diabetes often feel very lonely. Sarah goes to a huge school, and she's the only child with type 1 diabetes. It really helps her to get to know other kids with diabetes. Find local functions, or call JDRF. Encourage your child to go to diabetes camp and come home with some phone numbers and email addresses.
  7. Don't sweat the small stuff. I know, it all seems big sometimes. I totally get it. But look at the big picture.
These kids are expected to make medical decisions that affect their lives, all day long. It's kind of crazy when you think about how much responsibility a child with diabetes has. As parents, our job is to parent, but with a little additional understanding and compassion. It's not always easy, and every kid will make bad decisions from time to time. Help your child learn from those experiences rather than punishing them.

And I should say that this is just what's working for us right now. She's 12. I know it's going to change and get harder. I definitely don't have all the answers (wish I did!). I know there will come a time when we're feeling defeated and begging for help. So I'd love to hear from other parents too, as I know there are parents out there with amazing stories and ideas for better diabetes management.

Thanks for listening!

Wednesday, September 21, 2011

Do Amish get type 1 diabetes?

Strangely, this was on my mind as Amanda and I wandered through Amish country yesterday, but Amanda is the one who asked it out loud. It's a good  question. The Amish are a fascinating culture. They live mostly in the past and are less affected by big city life and all that goes with it. They have much less medical care, though I don't know if they get the usual vaccines and such. I doubt it. And there are different groups of Amish, some stricter than others.

Do they get type 1 in the same numbers as the rest of us? I'd love to know. I did some research last night and found that they have significantly less type 2, though that is thought to be mostly attributable to an active lifestyle. I can tell you also that there's no high fructose corn syrup in their cookies or cooking in general. Same goes for other types of preservatives and junk that we eat. They cook the same way they've been cooking for hundreds of years.

We bought a cookbook.

But back to diabetes. If there was a way, I think this would be a fascinating study. The Amish are generally more genetically linked because they are a relatively small community. Do they get type 1 in the same percentage as the rest of the population? When they do, is it random, or can it be traced to genetics? What is the outcome of an Amish type 1, when you remove the canned and processed crap that the rest of us eat? I think knowing more about how it affects this group might provide some answers, or at least more questions to follow up on.

Regardless, we had a great visit in Amish country. We talked and giggled, we toured an Amish home and ate a fresh baked Amish cookie (best cookie EVER), we rode in a horse drawn buggy. We had sorely needed girl time.

Oh.. and how amazing is this. I just typed this post on my phone while riding in a bus through the PA countryside!

In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com

Monday, September 19, 2011

Let's poke the baby!

I've come to the end of my second day away from my Sarah. For those of you who don't know, I am on the East coast for a conference while Sarah is still in CA. She's doing great, thanks much to my mom for subbing for me and waking late into the night to "poke the baby". Yes... I know Sarah isn't a baby. She's a young lady now. She smart, funny, sarcastic, adventurous, beautiful, and so much fun. And she's my baby.

Sarah's always liked routine. She needs to know where to be, at what time, and what the plan is. Dealing with her diabetes is no different. As long as there's a plan, and we stick to it, she's great. So somehow, at some point in the last 16 months, I decided to be funny and sing a little diddy to her while I poked her finger for her bloodsugar test. It's not really very clever or original. Its basically me singing about poking the baby to the tune of La Cucaracha. Yep... But Sarah loves it. Today, the very first text in the evening after her classes was about how she misses that. She wants mama to come home so I can poke her and sing my silly song. It's kind of funny how much we've bonded through this experience of Diabetes.

I wish I didn't have to poke her at all, but I am looking forward to being home to poke the baby on Friday.

Sunday, September 18, 2011

Enough is enough - we need to stop the need for burning candles

I try hard not to dwell on the negative. But as I sit here in a hotel room about a bazillion miles from my sweet girl, I can't help but ponder. Truth: a small percentage of type 1 parents are members of the diabetic online community. Truth: Since I joined the community far too many children in this community have died. How many more pass by us unnoticed?

I can't dwell on this. All I can do personally for my "daughter is to help her manage her bloodsugar closely. But we are a community, and there's power in that. Why have we not DEMANDED of JDRF, ADA, and of any doctors and reasearchers who will listen, that this needs attention. Look it up. There are ideas, loose theories, but no one knows why this keeps happening. I read something the other day that one theory is that a low sugar could result in a heart irregularity. Okay... so Mr. Researcher, why have you not selected a hundred kids or so and put a heart monitor on each to see if there's any irregularity during hypos? And while I understand how much pain these families have to be in, has anyone done research to determine as many facts as possible; MDI or pump? Activity, food, insulin in the hours before the death. Insulin in the blood at time of death. Is there any way to confirm long/short acting? Are there any corrrolations with age, race, geography, length of time since diagnosis, other health problems?

I suspect part of the problem is that it is hard to ask these questions. As a D parent myself, I know that diabetes makes parents feel more responsible than probably any other disease. We aren't just responsible for making sure the kid takes a pill each day, we are responsible for their health 24/7/365. How could we not feel responsible when something goes wrong, even though each of us intellectually know that we can't control D as much as we'd like to think.

So here's my plea to anyone who will listen. Let's make this a priority. Even if this takes a small amount of money away from research towards a cure, I want.... We NEED these deaths to stop.

Thank you

Saturday, September 17, 2011

Taking a trip requires a lot of brainpower!

Tomorrow morning I will leave ridiculously early on a pair of flights to take my older daughter, Amanda, and I to Pittsburgh. I am very much looking forward to this trip because it will be the first time I've had Amanda to myself in quite a long time. Amanda is 20 now, and I am so grateful that she still wants to do things with her mom. I won't write too much about Amanda because, unlike Sarah, it embarassses her. She's my quietest child and prefers to remain mostly anonymous.

So instead I'll focus on the challenges of leaving for a week when you have another child with diabetes. Okay, so it's not just the diabetes. Sarah is my youngest and she's been attached to me like superglue pretty much since she was born. And I have to admit I'm pretty attached to her as well. But when she was diagosed with diabetes 16 months ago, that kind of put our attachment into overdrive. Intellectually, I know that this week is going to be good for both of us. Sarah needs to see that she can take care of herself when mom's not around, and that someone else can do just as good a job at helping her care for herself.

Sarah is staying the week with my mother, though dad will still play chauffer to her various classes during the week. I think it will be good for my mom too, because although she's been with us a fair amount since Sarah was diagnosed, she hasn't had any experience with nighttime - which is usually the only time Sarah really needs any help these days.

So in preparation for her week with grammy, I wrote a novel, most of which (took out the personal stuff) I have posted here. Okay, it's not THAT long, but once I started thinking about the amount of little things that go into keeping Sarah healthy and safe, it just kept getting longer and longer and longer. It's hard to explain what goes through my mind when I'm deciding how to handle a nighttime bloodsugar. How I'm weighing the time and her sleep needs, her insulin on board, how much she ate and whether that might kick in, and whether a basal reduction will work given the current circumstance. I guess I could have just bequeathed her the pink panther book, but it's so generic and I've kind of got Sarah's care down to a science. - If you're a parent of a child with diabetes, please feel free to use any part of this you find helpful, and change anything for your own use.

So tonight I will take Sarah to my mom's in the evening, where we will change her site so my mom can watch and learn. Tomorrow, Amanda and I leave around 4:15am (yikes!!!) so that we can get to the airport in Pittsburgh before dark. Monday and Tuesday we will relax and have some fun. We plan to drive into Ohio and spend some time touring through Amish country, something we've both always wanted to do. Wednesday we head back to the airport so that the Principal Financial awesome trip planners can pick us up and take us to the resort where Amanda can completely chill and relax, along with some horseback riding, cooking classes, and possible art tour, while I learn more about the ins and outs and regulatory issues with retirement plans.

Sarah and I will still be connected through cell phones, text messaging and facebook. I love technology!!!

Friday, August 12, 2011

Because every good story has a beginning...

How it all began...

This blog post is by special request from Sarah's grammy. I'm glad she asked, so I can get this together before I start forgetting - as if that's really possible.


Sarah always seemed to have odd health. She’s a third child. The first two were much more typical; ear infections, coughs, colds, snot that seemed to go on forever. Yeah... ya know.

But not Sarah. She rarely got colds, and when she did they seemed to last about five minutes and then POOF, all gone. Instead of sniffles, snot and coughs, she got fevers and vomiting - not simultaneously. Since she was about two she’d get an unexplainable fever, usually topping out around 103 at least 3-4 times each year. The fevers were odd in that they were never accompanied by any other symptoms. She also had frequently projectile vomiting attacks. Every 2-3 months she would wake up in the middle of the night (it was ALWAYS the middle of the night), cough once, and SPEW! And when I say SPEW.... I mean it in the worst possible way. That hollow leg she’s always had, yep, it was filled with gunk that would spray bed, walls, furniture, the moon.
Imagine how happy she was when she learned pickles were a "free" food! - Spring 2000 - 9 years to diagnosis

I took her to see the doctor many times and it was always the same answer. She must have a virus. Then, around age 9 we started to notice that Sarah was a love and a half when she was well fed, but turned into a raving lunatic when she was hungry. Okay...odd.

Then, on February 24, 2009 (just over a year before her diagnosis) she nearly passed out at school. I took her to the doctor (not her usual pediatrician, as she was unavailable). He did some tests, and checked her blood sugar. Okay, here’s where I get extra sheepish... He said something about her blood sugar being abnormal - but didn’t elaborate. I assumed she hadn’t eaten and had a low blood sugar. It honestly never occurred to me that her blood sugar might be high! Kids don’t get high blood sugar, right? That’s reserved for older folks who don’t eat well and don’t exercise (before any of my type 2 friends flog me, yes... I’ve learned since then). So, the doctor didn’t seem worried about it, and I put it out of my head. She seemed to get better and all was well...for awhile.

I remember thinking in early 2010 that Sarah seemed thinner than she had. Sarah has always been a thin child, and I’ve always had to shop those stores that carry a hefty supply of slim sizes. But now her slim pants were baggy and in danger of ending up around her ankles. Weird. She was eating well, so I attributed it to an upcoming growth spurt (probably some wishful thinking because she was quite the shrimp at the time). She continuing having the frequent vomiting attacks, though the fevers seemed fewer. We had taken her in and called the doctor so many times that by this point we’d just decided it was a Sarah quirk and that she had a sensitive stomach or something.
2/15/10 - 1 month, 3 days to diagnosis

In early February 2010, Sarah had an audition for the Music Circus. As I drove her to this exciting opportunity, I suggested she practice her song just a couple more times along the way. She sang through it, not really sounding like the enthusiastic Sarah I usually hear, and then went quiet. I looked back and found this (I snapped this shot when traffic stopped, of course...).

3/2/10, 16 days to diagnosis
In late February 2010 we went to Disneyland for a few days. One of Sarah’s very favorite places in the world. On the morning before we made our first trek into the magic kingdom, Sarah went downstairs to the hotel lobby with me to get a parking pass. As soon as we got to the desk, her skin seemed to change from healthy tan to sickly green, and she told me she felt like passing out. I took her to a bench not far away, and we sat for a few minutes. She began to feel better, and we went back upstairs, gave her some food, and started our day.


This was the first time at Disney that my husband and I felt we could get a little Disney time without children. Our older daughter, Amanda, was nearly 18, and her best friend came with us as well. So when the girls all decided to take an afternoon together, we were all for it. The girls headed over to California Adventure, and we stayed in Disneyland for a couple of hours before heading over to meet them. We found an exasperated Amanda and an unhappy Sarah coming off the giant Ferris wheel.
3/14/2010 - 5 days to diagnosis

Amanda told me that although she’d taken Sarah to the bathroom right before they hit the line, about halfway through the line she had to go again. Luckily Amanda’s best friend saved their place. This was the first sign that Sarah was going to the bathroom more than usual. I should mention that Sarah has always been a HUGE water drinker. Water is her favorite, actually her only, drink. She drinks it all day and all night - and has since she was a baby. Consequently, Sarah has an iron bladder that can hold approximately as much liquid as your average lake.


On our last day at Disneyland, Sarah was just not herself. She was dragging. She asked me for a milkshake at some point, took about three sips then lay down on my lap on the nearest bench - and there we stayed for quite awhile. Looking back, I can’t even imagine how high her blood sugar must have been with the churros, pretzels, ice cream, and overall Disneyland goodness. But somehow she kept bouncing back, so we didn’t realize it was anything serious.

We hoped being home and back into a normal routine would help Sarah feel better, but it didn't. Five days later we took her to the pediatrician and the rest is history. I've blogged some about it before. But here are the basics.

I called the advice line on Wednesday night and told them Sarah's symptoms. She was primarily lethargic, I remember. She'd lost weight. She just overall didn't feel well. She had a headache. I got an appointment for the following morning.

We went to the doctor, and she looked a bit better (isn't that the way it always is?). Still, her pediatrician decided to run a few tests. We went down to the lab for blood draws, and back up to the doctors office where they had her pee in a cup. Everything seemed fine, and we headed back. I dropped Sarah off at school and went back to work.

That night, everyone decided they wanted Mongolian BBQ for dinner. So the four of us piled in the car, and off we went. My cell phone rang  not long after we left the house. I answered it, and it was Sarah's pediatrician. She asked me where we were...weird. I explained. She asked how close we were to the nearest emergency room - and my heart dropped out of my chest, rolled a few times around the floormat, dissolved under the car, and bounced squishily down the street.

The doctor explained that the nurse had misread a ketone test (uh...huh?). Something about the nurse telling her .1 instead of 10 (or something like that, I didn't have a clue what ketones were at the time, so she was speaking a foreign language). She said we needed to get Sarah to the hospital ASAP. She was going to call ahead and let them know so they'd take her right back. She said it looks like Sarah has type 1 diabetes.

At this point, I'm still in la la land, because I hear diabetes and know what that is, but I'm not really comprehending the magnitude. So off to the hospital we went. About 8 hours in the ER were followed by an ambulance ride to another city where they have a diabetes specialty. It was 2am, and I very groggily managed to follow the ambulance without causing an accident. Sarah went straight to ICU, and stayed there for two days, until the darn ketones decided to depart. Then it was a plethora of people whizzing in, all bearing paper charts of snacks, carbohydrate information, sick day, injection instructions, etc.

And thus began our journey...

In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com

Thursday, August 4, 2011

Ice cream you scream we all scream for ice cream!!!

So tomorrow is the big day. The day when thousands of people with diabetes, and those who love and support them, will undertake a monumental task.

We will.....
Eat a bowl of ice creamy goodness!!! And do you know why?

Because we CAN! Because diabetes does NOT mean you have to stop enjoying life, or live on a diet.


In this video, Sarah expresses how she manages to deal with diabetes while still enjoying the foods she loves. And does it while wearing a startlingly appropriate shirt, I might add...

In the end, it's not about the ice cream. It's about the horrible misconceptions about diabetes that hurt my child and so many other children and adults with diabetes. It's about people assuming they can't have something, without even asking. It's about the time Sarah's school had a party, and they were short one cupcake - because they "knew" the diabetic kid couldn't have one. It's about CHANGING those misconceptions.

So I'd urge those of you who haven't already, check your facebook events and just click "attend". We appreciate your support. And tomorrow night, we'll be here:

Sunday, July 24, 2011

Yes, she can eat that. Can you?

Just a quickie post to echo the frustration from many in the diabetic community with the continuing misconception that people with type 1 diabetes have to "diet".

A nutritious diet is important for everyone. We all need to eat well, combining whole grains, vegetables, and fruits, proteins and calcium. If you eat nothing BUT ice cream, your health is going to be a wreck - whether you're diabetic or not.
Sarah's diet, and the diet of type 1 diabetics in general, is NO DIFFERENT FROM ANYONE ELSE'S!

Sarah is not on a DIET.

Sarah has diabetes, and that means that her body doesn't produce the insulin it needs to convert the glucose in foods into energy and stored glucagon. So, when she eats, she just needs to manually replace that missed insulin. It's basically as simple as that! Sure, some foods affect her blood sugar levels more than others. Sure, sometimes we have to get pretty creative in delivering her insulin. Sure, if her blood sugar goes too high or too low she can get sick or need medical assistance. But the only reason this is necessary is because her body isn't taking care of the problem, and no matter how hard we try, we cannot replace the body's natural process.

And just to make the point. The very worst things that could happen to someone with type 1 diabetes, a severe hypoglycemia (low blood sugar) or a severe hyperglycemia (high blood sugar) could just as easily happen if she eats a bowlful of fruit, carrots, or pasta than if she eats a bowl of ice cream.

Are ice cream, cookies, cakes, and other goodies difficult to deal with? Sometimes. But not as difficult as breakfast cereal, or a banana. Fatty foods take longer to raise her blood sugar, which gives us more time to correct an impending high blood sugar. Whereas a large banana might raise her blood sugar much faster than the insulin she took can regulate it.

So I'd urge everyone, every single one of you who made it this far - share this information. Pass it on. Pass on what you know about type 1 diabetes. We will never stop the misconceptions if we don't band together and share the knowledge.

Saturday, July 23, 2011

Eagles and earthworms

Life is what you make it. I've thought about this a lot lately because in raising a child with diabetes, we both struggle with balance. It's hard. A big part of me doesn't want to let her out of my sight. But the more rational part of me knows that she needs independence to grow up mentally healthy and prepared to tackle life. And in order to be able to let her go, and leave her for hours at a time, she needs to be in control of her diabetes. And she is.

Diabetes is her opportunity to really show herself, and everyone else, what she's made of. And I'll tell you... she's made of some strong stuff. There's a huge mental component to dealing with diabetes because it doesn't rest and doesn't let you rest, or forget, or take a break. Not ever. Sarah must be prepared to deal with a diabetes related emergency on a moments notice. And... she has to be prepared to deal with that emergency without creating another emergency.

And I think I've figured out one of the reasons Sarah has been so successful.

She wants to be normal.

Seriously, even though that seems kind of backwards, it really isn't. Because in the end which option allows her to really be more "normal"?
  • She can choose to briefly ignore her diabetes by not testing, eating without insulin, and not listening to her body. This might allow her to feel normal, for a little while. But she's learned from hard experience (cough...pretzels....cough) that her blood sugar doesn't really need to climb very high before she begins to feel absolutely horrible. Anything over 250 for any period of time and she's a miserable wreck. 
OR
  • She can choose to take the time to test, bolus correctly, and listen to her body when she feels off. She spends a small amount of time on diabetes, but in return is allowed to do everything she wants to do, without restriction. And not only that, she doesn't like the kind of attention that comes from being sick. She prefers people to recognize her for her sparkling personality. :-)

In the beginning I really was afraid to leave her side. I sat in the theater when she practiced. Every time. Even during three hour classes. But now, about 16 months later, I drop her off at the door, and head out to run errands or take a walk. Sarah has a bag which stays in the room with her. Her bag contains (I dumped it out and checked the contents this morning):

A cell phone
A meter, test strips, etc.
Glucagon
A single serving box of rice crispies cereal
Two single serving pouches of crackers
Pringles pizza sticks
Pirate booty
Assorted other goofy stuff that makes it into pre-teen bags...

So she's ready. If her blood sugar begins to go low, she has a variety of choices in single serving sizes. She can call me if she needs me - but she never has. In fact, in nearly a year and a half, I can't recall a single time she's had a serious low or high during theater, and it's only happened a couple of times in school.

I'm not going to say that there are no diabetes emergencies in her future, because there likely are. But I will say that by being vigilant, making good food choices, and being mentally ready for anything - I really think that she is doing everything she can to ensure she can live as healthy a life as anyone without diabetes - in fact, I'd guess she's healthier than a whole heck of a lot of kids her age.

And I think this attitude is applicable to life in general. I know people who allow all life's little issues to crush them.  And I know other people who stomp on those issues and move on with a smile.

My advice? Find your joy wherever you can. Don't dwell or focus on other people's drama. Life isn't meant to be a bed of roses. Everyone has challenges, strife, and difficult times. Some people rise to a challenge, and some dig a hole in the ground and bury themselves.

Where will you be? Will you soar with the eagles, or hide with the earthworms?

Tuesday, July 19, 2011

Time to step back and....wow....

Every once in awhile I stop and take a bit of time to think about how much our lives have changed over the last few years. So many changes!

It all started when my incredibly handsome son, Devon, announced to us shortly before his 18th birthday that he was joining the Marine Corps. That was a surprise, especially because Devon was not particularly fond of discipline, which I hear is kind of a big deal in the Corps. I was so proud of him that day. He'd actually taken the time to research it, and planned his approach to both his parents (who were very supportive) and his extended family (who mostly thought he was a bit nuts). But he told everyone in no uncertain terms that it was his choice and he was asking for their support, not their permission. He left for boot camp a boy, and I swear to you, he came back a man (or at least well on his way). And now you're married to beautiful, amazing Ashley. You are a lucky guy!


My oldest daughter, Amanda, graduated from high school shortly thereafter and began college. She has dreams and goals, and continuously works towards them. She loves to write, and is constantly working on a variety of stories and ideas. Amanda is a wonderful daughter, and over the last 2-3 years, has begun the shift from daughter to daughter and friend. I love spending time with her, and I can completely see us hanging out, going to chick flicks (our idea of a chick flick is Transformers), musicals, and just talking. And can I just say that she's also the best big sister on the planet, and has been a lifesaver over the last couple of years - always available to help with her younger sister.


And exactly 16 months ago, my youngest daughter began her biggest challenge when she was diagnosed with type 1 diabetes at age 10. Just so we're clear, type 1 diabetes does not define Sarah - at all. In fact, I am most proud of the fact that she has overcome so much and lives her life with the closest thing to normalcy possible. She's a busy kid. She spends 3+ days per week in theater practice, and another in voice lessons. She loves traveling, and board games, and basil quesadillas. She has a wicked fast sense of humor, is becoming fluent in sarcasm (kind of a requirement in this family), and has an absolutely beautiful singing voice that is improving all the time.

And last week when we were discussing managing her diabetes, she blew me away. We were talking about how important it is for her to be responsible, and vigilant - because she was preparing to spend the week at a school friend's house and art camp, where she'd be 99.9% responsible for her own care. I told her to try not to look at diabetes as a problem, but rather, as a challenge. And Sarah looked at me and said, in all seriousness, "Mommy, I don't look at it as a problem or a challenge. I look at diabetes as an opportunity." She went on to tell me how much it meant to her to help other kids with diabetes. She wants to be a good role model, and show other kids how they can live full, happy, healthy lives with diabetes.

Sarah my dear, I can only imagine the lives you will touch in your lifetime - but I know it will be many. Kids naturally seem to look up to you, and through your example, kids with diabetes will see that life is beautiful, because you make it so. I am so proud of you! You are an amazing inspiration to me and everyone who knows you.

And to my three children, I love you all more than life. I am incredibly proud of all three of you. Wow... I'm a seriously lucky mama!

Wednesday, July 6, 2011

Holy crap - when did THAT happen?!?

I am a pillar of calm, zenlike mom. I am not sappy, or dramatic, or weepy. I do not cry at movies, or weddings, or even funerals. I am the calm one. The one who doesn't fall apart and keeps a level head through every crisis.

Or, at least I was until this last week - when, HOLY CRAP, I cried! Twice! In one week!

Cry number one was a shocker. I've been talking about diabetes and often relaying Sarah's diagnosis story for over a year now. But put me in front of a whole group of executives from various organizations, and I go to pieces. I was relaying how she'd been sick. She'd gotten thinner. She'd felt like passing out. I told about how we took her to her pediatrician, who'd pronounced that she had a virus of some sort and could go back to school after a few blood tests.

But when I tried to explain my feeling as I answered my cell phone later that evening to find a very concerned pediatrician on the other end... When I told how she'd asked me how close we were to the nearest emergency room... I lost it, and fortunately Sarah was there to pick up the slack. - Afterwards I decided that my loss of composure was probably a good thing. Hopefully some of those folks felt, just for a moment, the terror of hearing your child has a serious illness, because we need their support to continue to fund diabetes research.

Cry number two was on the Fourth of July. Sarah decided she wanted to spend the night at her grandma's house, so she could continue to spend time with her amazing older cousin, Ashley. I let her go, with the condition that she not ingest any carbohydrates after dinner, as I didn't want her to have any meal insulin left in her system at bedtime, because I wouldn't be there to check her until the insulin passed through. They went to watch fireworks at her uncle's house. At some point in the evening, cupcakes were distributed. It was after 10pm, and Sarah had had a long day. She wanted a cupcake, and I had to say no. Her next texts to me broke my heart;

I wish I didn't have diabetes.
and
Why did it come for me?
and
It is so unfair!

She ended up coming home that night, mostly because she really needed some mama hugs.

But you know what? She's right! It's not fair. It's not fair that she has to watch every single thing she eats at 11 years old. It's not fair that she has to poke herself 6-10 times every day. It's completely not fair that I have to stick big needles in her 2-3 times a week to change her insulin pump site and CGM site. And on that note, it's not fair that she has more equipment on her belt than spiderman!

And yes, before anyone tells me so; life isn't fair. I know. I've used that line myself... a lot. I know I'm whining, and I know there are kids with much larger challenges. But this is MY kid, and HER challenges. And it's just not fair.

See, there I go again...

Sunday, July 3, 2011

Does it mean I'm becoming a zombie if my brains are leaking out my orifices?

Wow, it's been a week. Of course when isn't it? Sunday always seems to turn into Monday, then Tuesday...

One of my methods of coping has always been to take the "problem" and deal with it as a "challenge". I dunno, it just sounds better. A problem is dealt with whereas a challenge is conquered. This was a week of challenges, triumphs, and moments where I just really wanted to blow a deafening raspberry.

We had a week of pretty awesome firsts actually. My oldest, Devon, is working on something very cool and top secret; my middle child, Amanda, started her first job this week; and my youngest, Sarah, had her first real public speaking opportunity.

Diabetes land offered some of this week's challenges, as I continue to fight with Kaiser to get a CGM, as summertime blood sugars are making Sarah's CGM look like a never-ending ride on the Giant Dipper, and as Sarah's nighttime basal (which cost many hours of sleep to get right) seems to have gone ca put - "Hello sleepless nights, I haven't really missed you!"

At home I'm generally feeling disorganized. I seriously want/need to have a garage sale, but can't find the motivation to organize the ridiculous amount of STUFF that I want to get rid of. If anyone out there is a spectacularly wonderful organizer, I will pay you to help me...

Other random notes from this week...

  1. Dishonesty doesn't pay, is really stupid, and doesn't end well - so just don't go there, k?
  2. If you think I talk about diabetes too much, please feel free to ignore me but before you do, consider reading this post and try putting yourself in my shoes for just a couple of minutes and ask yourself - If it was your baby, would you handle it differently?
  3. Friendship is where you find it; sometimes it's at home, at work, or inside your PC. Sometimes you have to be your own friend, and find a quiet moment to just zen out.
  4. If you sit under giant lights, you're going to be accosted by giant bugs. And when your child is a pre-teen, telling her that they're on their way to the Ugly Bug Ball just doesn't cut it anymore.
  5. I really like teenagers who can still have fun like kids.
  6. It's time to take a nap when you get all sappy and sentimental in a costume shop, start reminising with the woman who made from scratch your baby's first costume (red riding hood cape), only to find out that the cape that was so darn sweet on your baby is very popular with big girls who are trying to look sexy/sleazy. Ew...just ewwwwwwwwww.........

And now I'm hanging out at my PC rambling on waiting for IOB to come down to 0 so I can go to bed. I'll let you know if I start having a hankering for brains...

Oh, and if you made it all the way to the end of this, won't you consider leaving a comment to let me know what you think? I enjoy writing for myself, but it's pretty cool to hear what others think. Thanks!

In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com

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?

Sincerely,

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???