Diabetes Mom

It’s been a long time since I posted and for those of you following me, I’ve missed you! Summer has gotten away from me as I have been trying to enjoy the good weather here in Minnesota while we have it!

The biggest news in Jack’s life is that he is no longer using an insulin pump. (Long story, having to do with “temper tantrum”, throwing it across the driveway and shattering it). It certainly wasn’t something we did by choice, but I have to say it has been the best thing ever for our family.

Pre-drama, Jack’s numbers were all over the board and we couldn’t figure it out. He would spike, (for what we thought), was no reason. For instance, he always would test at school before he got on the bus to come home. But many days, although he would have a great reading then, when got home he would be 400. And of course he swears he didn’t eat anything!

Then there were the mornings when he woke up in the 300′s after going to bed at 96. His pump’s basal rate was programmed for 3 different amounts during the night, but nothing seemed to work for very long. It was so very frustrating. I have to admit I even called Medtronic many times pleading with them to send us a new pump because I was convinced this pump did not work. But they would trouble-shoot over the phone and it always “seemed to be working” when we called them.

But then that dramatic day happened. And as a “natural consequence”, he was forced immediately to go on Lantus and Novalog shots. It was a terrifying day because of course this happened at 6pm and I had no Lantus prescription nor had any idea how much to give him and the clinic was closed. We got some help and had a long night, but it worked out fine.

So imagine my surprise when his numbers remained in the 100′s for almost 1 week straight, which for Jack was unheard of! Hmmmmm….what gives? The pump was designed to not only make it easier for kids to take their insulin, but was supposed to keep their numbers tighter and have better control of the spikes. With the pump we can change basal rates and insulin doses with the touch of a finger…right?

So what has changed? It didn’t take me long, (ok, longer than it should have), to figure out it was the nut behind the wheel! Now Jack has to take a SHOT for any carb that he eats and if he has a high number we couldn’t blame it on the pump not working. In fact the ONLY reason left for him to spike those numbers is eating without taking a shot! hallelujah!

Suddenly snacking wasn’t as much fun anymore. Having a couple suckers on his bus ride home was much more obvious. Having a midnight snack when the rest of us were sleeping stood out like a sore thumb. Hmmmm. Was he getting lazy with the pump because it was so easy? Did he truly just “forget” to pump his carbs? Now it was more than just a mere passing thought that he had to take insulin…now he has to get a shot, draw up insulin and stick himself EVERYTIME he wants to eat. (And 12 year old boys eat often!)

Even though Jack has been battling diabetes for more than 5 years, one would think it would get easier for a mother to watch their son stick himself with a needle. But let me tell you…it doesn’t. The apprehension you see, as he sits there with his shirt rolled up tucked under his chin while pinching the skin on his belly with one hand and holding the shot just above it with the other, never gets easier.  And then the wince. And then I wince too– just as much today as the first time I saw him do it. What a brave young man.

So here we are three months later and he is still on shots. (We got another pump but haven’t told him that). And it’s not because I want him to suffer with the shots (well, maybe a little for trashing a $7000 machine), but because his numbers have been SO MUCH BETTER. He’s suddenly taking more responsibility for his numbers since there is nothing else to blame. He has to think twice before he goes for handful after handful after handful of Cheese-Its every time he walks by the cupboard.

Diabetes is a pain-in-the-neck, (or stomach if you will), disease. I think about him every time I take that handful of Cheese-Its from the cupboard…was that my third? Fourth? Tenth handful?? But is the pump truly helping to control his diabetes… well, this Mom thinks only if the control stems from the user.

Jack starts school next week and he wants to go back on the pump. But the jury is still out. It is so much easier for him and he has learned his lesson and every time I see him give himself a shot I want to run upstairs and give it to him.

But I’m scared! I am scared of the real “natural consequences”.

10 lessons learned by Jack T. Foley

1. Never unplug random cords without knowing what they are or you might pull out your clock cord and over sleep for school.
2. Never set the clocks an hour ahead when it isn’t daylight savings time or you will miss important events like sports or church. Especially if you don’t tell anyone.
3. Never let your brother cook your food or you’ll go hungry and possibly get into trouble for sneaking food.
4. Never take your sister’s candy even if it’s little by little. Pretty soon, there will be a lot gone and you’ll get into trouble.
5. Always eat everything for dinner or you might miss out on a dessert that your mom made that afternoon without you knowing.
6. Never wait until the last minute to do your homework. You will stay up late and then most likely get a bad grade.
7. Always say please and thank you or some parents might not like you.
8. Always do your chores or you will just get more chores and end up spending the day doing chores, not playing with friends.
9. Always keep track of your stuff. If you lose it, it will hurt you in some way.
10. Always take your time on projects. If you don’t, you will a bad grade and then your parents will be mad at you.

10 ways to bug your parents

1. Never hide your mom’s shoes or she might get you back by taking your shoes and hiding them in the garbage.
2. Never borrow your mom’s weights without putting them back or one day, you’ll wake up and be missing something.
3. Don’t pick up the dog and stick her into your mom’s face. Especially if she just woke up. You might never see the dog again.
4. Don’t wake up your parent’s by blasting loud music in the morning when everyone is trying to sleep or you might have your radio or Ipod taken away.
5. Always get permission before going to friends houses or you won’t go anywhere for a long time.
6. Always do your chores without complaining or you’ll just get more and then you’ll complain even more. Then you’ll get more chores!
7. Always tell your dad if you’ve moved his soccer equipment to put something else in it’s place or you won’t have a very happy father (or team.)
8. Never ask things more than once. Especially if you want to go to a friends house. They will get so annoyed; they will ground you for a week.
9. Never pick your nose in public, especially if you don’t want to draw attention to yourself. Someone is going to see it and then he or she will make an even bigger deal about it.
10. Never lie to your parents or they won’t trust you. Then you have to go everywhere with them and it isn’t fun.

Jack’s the best…

Ok, I’ll admit it. I LOVE diet coke. But I know how bad aspertame is so I’ve looked to other soft drinks to satisfy my carbonated thirst.

So for all you fellow carbonated beverage junkies out there here you go:

Lemon Lime Soft Drink:
Worst: 7UP…with 38 grams of sugar it has more than a twin-wrapped pack of Twinkies!
Best: Izze Esque Sparkling Limon…this is made from 25% juice, sparkling water and natural flavoring–and it tastes amazing!

Cola
Worst: Coca-Cola…No big surprise  (38g sugars, 140 calories)
Best: Oogave Esteban’s Cola…(24g sugar, 102 calories)…if you have to have carmel color and don’t like diet, you may as well save the extra 38 calories a can of Coke contains.

Orange flavored
Worst: Sunkist…Once again, No big surprise since Coca-Cola manufactures it:  (34g sugars, 130 calories)
Best: San Pellegrino Aranclata…(19g sugar, 80 calories)…this one has 18% juice but I couldn’t afford to try it!

Anyone know of a brand of carbonated tea?

Taken From “Men’s Health”

Funding stem cell research in a quest to find a cure for diabetes is something I completely agree with. But…Really??

Sperm Stem Cells–A New Source for Replacing Insulin Producing Cells?

Follow this link for the whole story:

JDRF News Blog – Juvenation

This is an awesome dessert recipe I just love. And the best news is, it is only 18 carbs!  (without the ice cream)

2 lbs. fresh rhubarb cut into 1″ chunks
3-4 cups sliced strawberries
1/3 – 1/2 cup white sugar
2-3 tablespoons brown sugar
1 cup rolled oats
1 cup flour
1/2 tsp. cinnamon
1/8 tsp. allspice
1/8 tsp. nutmeg
1/4 tsp. salt
5 tablespoons melted butter

Preheat oven to 375° F.

Combine the rhubarb and strawberries in a 9″ square pan. Sprinkle with white sugar. Mix together remaining ingredients in a medium sized bowl. Distribute over the top of the fruit and pat firmly into place.

Bake uncovered for 35 – 40 minutes or until the top is crisp and lightly browned and the fruit is bubbling around the edges.

Serve hot, warm or at room temperature, plain or a la mode.

Serves 6.

From Diabetes Daily

Like we do every three months, we trucked out to Hopkins to see the endocrinologist Wednesday. I think Jack’s starting to like going, and me too, because I try to set the appointment around lunch time and then we get to have a private lunch, just Jack and me. I probably should insist he pick a healthier place to eat, other than McDonalds, but it’s what he picks every time…except today! First surprise–Subway for lunch! (Thank you Jack!)

Another surprise–Jack’s A1C number. (A1C is a measure of your blood sugar control over the past 2 to 3 months. A person without diabetes would be around 5% but diabetics are typically much higher–but below 7% is the goal.) With all the junk food we eat over the holidays, it’s a tough time of year to keep his blood glucose under control. So going from 7.5% only up to 7.6% amazed me. I thought it was going to be closer to 8% since his numbers have been all over the board, with mostly highs since Thanksgiving. And although 7.6% is not really good, we promised the doctor to do better.

Which brings me to surprise #3. I told Jack I was going to be completely honest with the doctor and that I wanted to talk to her in private. But Jack refused to leave. Apparently, he wanted to hear absolutely everything I was going to say. So I thought “Ok…I’m not sure how this will go but Ok.”

So when she asked “is there anything else you’d like to discuss?”, boy did I gave her an earful.

“Yes, I’d like to discuss my frustration with Jack ‘forgetting’ to pump his carbs. I’d like to discuss his rampage last month about having to change his site–the one where he pulled out his site, threw it at his Dad and then barricaded himself in his room so we couldn’t get in. I want to discuss his lack of involvement with the whole diabetes management thing as a whole and what should I do about it! I think he is either in denial about this disease, or just sick and tired of dealing with it 24/7, 365 days a year. And I’d like to discuss how my heart is breaking because I can’t fix him or take his pain away, nor do I even have the smallest clue about what he is going through.”

Wow. I bet she didn’t expect that! I have to say the doctor looked a bit stunned as I spoke, but not because she hadn’t heard it before, but because she didn’t expect the tears. And I don’t mean mine, I mean Jack’s. I glanced over him only once but his water-brimmed, red eyes said it all.

“Well, Jack,” she said. “What do you think? Do you think you are in denial or are you just sick of everything about diabetes?”

“Just sick of it all,” he said.

“That’s normal Jack. I get sick of (my diabetes) too. But we have a job to do. We HAVE to have good control of our diabetes. It is just what we do. I don’t like it either but that’s our life…I’d like to give your Mom the name of someone who you and your family could talk to–she talks to kids all day about this stuff…If you go, will you talk to her?” she asked.

“Uh-huh,” Jack replied.

Praise the Lord! I guarantee you if I told him we were going to see a therapist, we would have had a mutiny on our hands! (And we still might when the other kids find out.)

I’d like to say that since Wednesday, Jack has turned a corner and is testing without being reminded and always “remembers” to pump his carbs. But he hasn’t. But I think the stage has been set and the lights are on and we are all getting ready to start a new chapter.

Or will it be just another surprise…???

This morning I got another call from the Nurse’s Office as I was desperately trying to log in an hour on the Stairmaster. As I picked up I heard Jack who said, “Mom. My number is over 400 and I have a trace of keytones.”
Silence.
Hmmmm. If I panic, I may fall off this dumb machine, so I say, “Did you remember to pump your toast?”
“Yes.”
“Will you look on the pump and tell me how many carbs you put in?”
“20,” he said.
“Did you eat anything else? Nothing to drink? Did you eat anything when you got to school?” I ask.
“No! No! NO!” he says.
“Well Jack, we HAVE TO figure it out…So you woke up at 123, a super number. You ate breakfast, went to school and now at 9:45am, you are 400 with keytones. So if you didn’t eat anything, what do you think happened?” I plead.
Silence again.
More silence.
“Did you go swimming in gym? Maybe your site fell out.” I say.
“No the pool is broken,” he adds. “But I did take my pump off for basketball.”
“For how long?”
“It’s a block day, so probably about 1.5 hours” he replied.
“1.5 HOURS?” I ask as I once again try not to panic.
“Yeah.”
“Well,” I say, “Perhaps we learned something here today….Perhaps 1.5 hours with your pump off is too long wouldn’t you say?”
“Yep. What should I do?”
“Pump another unit of insulin and call me in 1 hour.”
“OK,” he says as he hangs up.
And all I want to do now is scream! And I think, ‘When he plays basketball with his team, he does not take off his pump. During his team basketball games, he doesn’t take off his pump. Why in the world would he take it off today?’
As I watch the second hand tick off minute after slow minute, he finally calls back.
“I’m down to 149,” he says with a smile in his voice.
“Good,” I say, “but you came down awfully fast. Have a carb snack and pump it to make sure you don’t crash.”
“Ok. Bye.” (He never was one for lots of words.)
So I want to know, why does he not need a carb snack before basketball and but does for soccer?  Why does playing the Wii make him skyrocket but baseball make him crash? Why does he take his pump off for sledding, has no snack but good numbers?
If there is anything predictable about this disease, it is that his numbers will ALWAYS be unpredictable. Or maybe it’s just that 12-year olds are so unpredictable?

JDRF just announced a recently published study about declining mortality rates for people with type 1 diabetes, and what it means for people living with type 1 today. Check it out!

Interesting fact:  The average home today contains 62 toxic un-safe chemicals, which is more than a chemistry lab at the turn of the century. But I have talked to many people who feel that the “trusted” brands they were raised on are safe and not causing harm to either them or the planet.

But do they know:

Stop and think why do products have child proof lids? Why do they say “use in a well ventilated area”? A friend said to me once that “Bleach must be safe because people have been using it for years.”

For the last two weeks, Jack’s numbers have been like a steep roller coaster, but not like one I’ve ever been on. On his roller coaster,  the blind hills appear out of no where and you never feel the momentum build. Instead, it’s a sudden drop to the bottom and swift climb to the top that I never see coming.

But the operative word is “I”.

Our goal is to have his numbers between 80 and 180, but for the last couple weeks they have been swinging wildly between 40 and 580. And every time he has an extreme high, we sit down and figure out how that could have happened. But every time it is the same story: “I guess I forgot to pump my lunch,” or cookies, or popcorn or the candy his teacher gave him for acing his math test.

FORGOT?? Maybe sometimes. Forgot accidentally on purpose? Most likely.

It seems having migraines and feeling sick isn’t enough deterrent. So I finally took a step back and took that child in my arms and held him…for a long time. Then I asked him, “Jack, what if I had cancer. And what if there was a cancer treatment for me that would make me feel better but more importantly, would extend my life so I could be around to see you graduate high school, and college, get married and have children. But instead, I chose to only do the treatment when I felt like it or if I was in a good mood. And you and Dad had to sit there and watch me suffer as I ignored everyone in my family pleading for me to take care of myself. How would you feel?”

“Sad…. ANGRY,” Jack said.

“Yep. And I love you too Jack.”

As I woke up this morning, I wondered if he would remember our conversation the next time he “forgets” to pump his Oreos. Maybe not. But maybe…just maybe.