Since Diabetes has entered our lives, our days have become very structured and very different. We have lost a lot of spontaneity. We thought we would share what it is like to have Diabetes. We also thought it would be interesting to see what it is like from our different perspectives.

Christi's Perspective (CP)
6:45am Hoist myself out of a very comfortable sleep. Colin (our ten-year-old) is going to day camp this week and he needs to be up at school by 8am. He is not going to like getting up early. I have my coffee and get dressed. I get Colin up and ready. James and Maggie are still sleeping.

7:30am I test James' blood sugar while he is sleeping to see if he will be okay while I take Colin up to school. James' blood sugar is high, so he should be okay for a little bit.

James' Perspective (JP)
7:45am Having a really good dream, Mom wakes me up to test me. I want to go back to bed. I'm irritated that I have to go downstairs to eat. Having a hard time staying awake while I'm eating breakfast.

(CP)
8:10am I get back from dropping off Colin (yay!) and James is up and waiting to eat. I draw up James' two shots. I make sure there aren't any air bubbles. I double check the dosage. I measure out his cereal. I give him his shots in his bottom and then he goes to eat. He always eats all of his breakfast. Thankfully I don't have to bug him about finishing it.

(JP)
8:15am I brush my teeth and comb my hair. Don't want to get dressed yet. Mom is bugging me to make my bed.

8:41am We are working on this blog and I'm tired because I was up really late last night.

9:45am Going to Grandmas to hang out and play Club Penguin on her laptop.

(CP)
9:30am I drop off James at Grandmas. I tell her that James needs to test at 10:00am and eat. Maggie and I go home so that I can work on the wedding dress I am making for a Labor Day wedding.

(JP)
10:00am Buzzer on oven goes off. I turn it off and I tell Grandma it is time to test me. I get out my meter and get my poker ready. My number is 339 (yikes) and I tell Grandma that I can have 1 carb for a snack. I tell her I want 3 icees. I get to eat them while I am still on the computer.

11:30am Grandma and I go to Walgreens to pick up milk and then she takes me home.

12:00n Lunchtime. My job is to make lunch for everyone. I'm really hungry and I don't know what to eat. I have to test my blood sugar. Mom gets my shot ready. Mom and Maggie (my sister) want taquitos, but I don't. I decide on pizza bites. I can have 7 of them. I also have some grapes and cheeze its and milk. I really want Diet A & W, but Mom makes me have milk.

(CP)
12n Grandma brings James and 2 gallons of milk home for us (since we are going through a gallon a day! Do they make more fuel efficient kids?) James can't get his act together. He is yelling at me and his sister. He is very grumpy. Slamming the doors on the microwave and the refrigerator. I help test him, and sure enough, he is high, which explains why he can't focus and why he is ticked off. I am ticked myself, because I tell him that feeling bad is not a reason for bad behavior. Of course, I'm yelling this at him, because he wouldn't listen to me when I was talking calmly. He then settles down as I take over his chore of making lunch.

1:00pm I tell James that he needs some time alone and he is sent to his room to read.

(JP)
1:00pm I'm in trouble for goofing off while making lunch, so I'm in my room reading a Star Wars book on Boba Fett. I think the book is good.

2:00pm Mom takes me over to my friend's house. We played.

(CP)
2:00pm I drop off James at his friends, only to find out that these two kids had arranged this play date without the other mother's consent. But it all turns out okay, since she is home and they are not going anywhere. I drop him off while he is going a couple of blocks away to help his friend go get his bike. I tell James to take his kit to the deck. I'm secretly worried that he will go low while they are walking the 3 or 4 blocks to retrieve the bike. I'm hoping they will be back by 3, so that James can test and snack. So, when I get home, I call the other mother to let her know what is going on, remind her that he needs to test and snack at 3pm. She tells me that she is setting the buzzer on the oven and all is taken care of. I'm so lucky that she is a nurse and that she gets all this mandatory testing and snacking. I relax now that I know she is informed and on task. I am also lucky that other parents are willing to take on the burden of making sure my kid is okay while at their house.

(JP)
3:00pm My friend's mom reminds me to test. I go to their kitchen and get my kit to test. I feel fine, but my meter says I am low (5 , so I eat 4 tablets and a snack from the bottom of my bag. My friend got himself a snack at the same time. We go get another friend and play hide and go sneak, basketball, and we set up mini golf in his basement with blocks.

5:00pm. Mom is here to pick me up. I am having a good time playing mini golf and I don't want to leave. Mom tells me that I am going boating tonight, so I need to come home to eat and get ready. That is a surprise and I am stoked.

(CP)
5:00pm I stop by the farm stand to pick up some sweet corn for dinner. James will need a vegetable with carbs in it tonight. I pick up Colin from a friend's house and then I go to pick up James at his friend's house. James does not listen to me when I tell him it is time to go. Once outside though, he gets excited when I tell him he is going boating tonight.

5:45pm Dinner is almost ready. The chicken is fried and the corn is done. Salads are ready. Milk is poured. I go downstairs to test James' blood sugar. He is low again. I return upstairs for 3 tablets and take them to James. At least I won't have to draw up a shot. I call everyone for dinner.

(JP)
6:00pm Our friends that own the boat come over for dinner. We are having fried chicken, corn on the cob, bread, and milk. Mom tested me while I was watching tv and I was low again. So she gave me tablets before dinner. I don't need a shot! The boat's battery needs charging, so we have to get that done.

(CP)
6:30pm I get showered and changed for a night out with my girlfriends. I pack a cooler for my husband and the kids so that they will have something for 8pm snacktime and in case James goes low again. I pray a little prayer that my husband and James will remember to test and snack. I have to have a lot of faith that James will be okay when I am not with him.

(JP)
7:00pm We get to the lake and the engine doesn't start. We had to paddle back in and charge the battery up more. Then it finally started. We finally went tubing. It was awesome! We went really fast and caught some air. Once it was like 10 feet high!

8:30pm We take the boat out of the water. I know it is time to test, so I test myself while they take the boat out of the water. I was 269 (high again). I had some cheeze its. I shared them with my friend.

9:00pm We came home and had strawberry ice cream. Dad tested me again and he gave me a shot since I was still high. We watched tv for a while, then Dad made me take a shower. I was worried that I was taking a shower after my shot. My mom once told me I shouldn't do this.

11:00pm I don't want to go to bed. I want to stay up later and watch more tv on Disney Channel. Dad said to turn the tv off and get to bed.

As I read over this post, which I hope did not bore you to death, I have noticed a few things. A few things that would go away if there were a cure for Diabetes.

1. I don't have faith that James will be safe with people other than myself. Thus, I have become a control freak (which I am not sure will ever go completely away).

2. Many of James' behavior problems directly relate to his blood sugars being out of whack.

3. James has to be really responsible even though he is only 8 years old. He can't always count on the adults around him to make sure he is okay.

So getting rid of Diabetes in our life would drastically change our daily routine for the better. Maybe I wouldn't have to stock up on snacks so much! Would you help us find a cure for Diabetes? If you are interested in donating, please go to JDRF's website.

Thanks again for all your prayers and donations.

Posted by: Pixy Misa at 07:35 AM | Comments (6) | Add Comment
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1 Thus, I have become a control freak (which I am not sure will ever go completely away). Whatchyoutalkin'aboutWillis? You've always had a strong control freak streak. Do I need to remind you about the times when we had to clean our room and the threats of bodily harm you used to level at me? James' diabetes just brings it out more. Heh. {insert ducking and running here}

Posted by: Kathy at July 31, 2007 03:48 PM (5z8Md)

2 Baldie's getting really brave isn't she? Heh. Actually, I read this whole post nodding my head and clucking with sympathy. My (please GOD) short-lived experience with gestational diabetes (where YOUR LIFE revolves around what you ate, when, and when you're next going to eat) helped me to understand completely what frustration you both must feel. Bless you, cutie pie James, I hope the JDRF hurries up! Lots of love, Margi *who is running like hell from Kathy, now*

Posted by: Margi at July 31, 2007 10:45 PM (66God)

3 Run, Forrest, RUN! Heheheheheheh. Baldie's getting brave? Chica, you've got no idea.

Posted by: Kathy at August 01, 2007 08:09 AM (5z8Md)

4 Have you ever read Dr Bernstein's book on diabetes? He developed the disease when he was 12, back in the '40s, when you had to sterilize needles and do all that work. Now he's in his 70's and says that as far as he knows, he is the only diabetic diagnosed in 1946 who is still alive. I bought the book for my adult son who didn't develop this horrible disorder until he was grown. He was ill, but we didn't know what was wrong. His sugar tested at 600 -- there's clue. Amazing that he was still walking around. It also should have been a clue that he was 6'3" and weighed 139 lbs... He had no insurance so he wouldn't let them hospitalize him. Instead, he stayed in the ER until they got his #s down in the low 300s, and then took a referral to a good endocrinologist to work on getting it down further. He read Dr.B's book, and says when he follows it he knows exactly what his #s will be. When he doesn't, there are the fluctuations you describe. Dr. Bernstein's method is hard, but it works. Most of the foods you describe are verboten...his is not a diet for the faint of heart, but it promotes health and longevity. Even at his age, he has no peripheral nerve damage. None. ...interestingly, when *I* go on that diet, I lose weight and feel wonderful. I'm not in the least diabetic, not even close. But I think Dr. Bernstein's way of eating works for anybody whose endocrine system is out of whack. BTW, he was originally an engineer. He got frustrated with the ADA's ideas about diet because his #s jumped around and he never felt well. So he went to medical school to learn what he could. And now, even in his 70's, he has a full time medical practice devoted to diabetics. Reading the intro to his book was inspiring. You can find it online if you google his name. If you buy into his ideas, just start them very very slowly. Change is painful. If anyone in your family is overweight, they would benefit too. Believe me!

Posted by: Dymphna at August 01, 2007 11:45 AM (Njon8)

5 on Baldie's bravada, I will not lower myself to that childish behavior. Because, of course, I was always right anyway. on the Bernstein book, it sounds very interesting. and I think I have heard of him. My husband is an engineer and the lack of stats makes him crazy. He would love to have James on the continuous glucose monitor because it would give us hundreds of numbers instead of 6-8. Is Dr. Bernstein's "diet" close to Atkins? When we once mentioned James eating more of an Atkins based diet, the doctors freaked out and wouldn't let us. I think it is just because all they know is carb to insulin ratios. So, my thinking is less carbs in, less insulin, less jumping around. Anyway, I will check out that book. thanks for the tip.

Posted by: Christi at August 01, 2007 12:46 PM (w7r8p)

6 My boyfriend has type 1 diabetes. He's 53 and has had it since he was 10. Even though he's had it that long, he still gets some severe lows. I joke (with gritted teeth) that he forgets he's diabetic. So I can really understand your fears about your son's sugars getting out of whack when you're not around to monitor him. You may already know this, but honey is one of the best things for bringing someone out of a low. It works faster than orange juice or the tablets. We carry honey sticks everywhere we go. They are straws filled with honey that you can get at farmers markets and natural food stores and the like. Also, you mentioned that when your son gets older, he probably won't want to use a lunch box to carry around all his supplies. I highly recommend getting a messenger bag. That's what my boyfriend carries, and it's perfect for stashing food, blood testers, etc. We don't leave home without it. Big hugs to you and your family! Let's hope they find a cure soon!!

Posted by: DogsDontPurr at August 01, 2007 05:32 PM (U44Ew)

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Well, it's that time of year again! Time for the Walk to Cure Diabetes! All week long we will be guestblogging here on the Cake Eater Chronicles to raise money to find a cure for Type I Diabetes.

I am Kathy's sister, Christi, in Omaha, Nebraska (the ol' homestead). My 8 year old son, James, has Type I (or juvenile) Diabetes. He was diagnosed right after he turned 3 years old on April 5th, 2002. We immediately went through 16 hours of survival training. This included how to test James' blood sugar, how to draw up and give insulin shots, and the quick and dirty education on nutrition.

The first 3 months after diagnosis were some of the worst months of our lives. There was so much tension in our house. So much blame. So much pain. We never thought we would get out of that phase, but eventually we did. Other families experience the very same troubling 3 months.

Now, Diabetes is just a regular part of our lives. Our regular life is somewhat different from other families though.

For example:

We have to eat at the exact same time every day, so that James can stay on an even keel. That means that James cannot sleep past 7:45a.m. He HAS to wake up and eat at that time every day. Not so easy, now that he is getting a little older and would REALLY like to sleep in.

We have to test James' blood sugars at least 6 times a day. So, no matter what is going on at 7:45am, 10am, 12n, 3pm, 6pm, and 8pm, all the action stops so that we can test James. Better have those supplies handy. Which leads to:

James must always carry his testing and insulin and snack supplies with him. He has a handy dandy Darth Vader lunch box that does the trick right now. Although he is lobbying for a nice new round baseball one for the new school year. I wonder what will happen when he hits junior high and carrying around a lunchbox won't be so cool. I guess we will deal with that new challenge when it happens.

We always have to carry extra food with us no matter where we go. One of the side effects of insulin shots is that you need to have a regular input of food to balance the input of insulin. When you are getting long acting insulin in shots, you can't just change your mind about eating. Eating can become a chore instead of a joy. So, when we are at baseball games for example, I look like overprepared psycho mom with the small cooler with enough snacks and drinks to cover any emergency!

So, enough with the "woe is me" scenario. We like to focus on the positive, it just isn't all that easy.

Since Kathy has been so nice to let us hijack her blog for our good cause, we have tried to make this as interesting as possible. So, James and I made a short video for you. We hope you enjoy it.

How's that for high tech???? Since James is getting older, I wanted him to be a part of this fundraiser and of course, video is more his speed. All week long we will have new clips for you to enjoy. If you click on "menu" in the video box and look at the related links, the one that is titled "JDRF Walk to Cure Diabetes" is a great promo clip that Kevin Kline does for JDRF. Very inspirational.

The Omaha Walk to Cure Diabetes is on Saturday, August 11th. Our team, James' Jaywalkers, is attempting to raise $5,500 this year. Last year we almost raised $5,000! We have great friends, families, and of course all of you out there that we don't know, who are so generous. We so appreciate the sacrifices you make to help find a cure for this disease.

You can click on this link to make a donation online: http://walk.jdrf.org/walker.cfm?id=86710340

Later this week, we will have more information on the kind of research JDRF is working on, along with what advances look promising. We will also explain why James is not on the pump (yet).

So, we'll see you on Tuesday for another compelling episode of, "As the Shots Continue."

Posted by: Pixy Misa at 11:45 PM | Comments (2) | Add Comment
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