The Rest of The Story

I've been writing about our experiences lately for many reasons. One, it helps me, ...... in a therapeutic kind of way. Two, I want the truth to be out there and not any gossip or horrific made up stories, which unfortunately happen when you live in a small town. I know that only a handful of people read my blog, but it's all I got. And three, I don't want to rehash it or relive it over and over again. It's too hard. What's done is done. I wish we could go back and make it not real, but we can't. So now, all we can do for Jules, and for ourselves, is to move forward..... as hard as that may be sometimes. Maybe I should get some cards printed out with my blog address on them? That way when anyone wants to know how it all started, I can just say "Here! Read this!".

I find that this is bringing up every issue I've ever had. Like not asking for help. I've always been that stubborn person who thinks that I should be able to do it all on my own. Anything less, I always saw as a weakness in me. And being too hard on myself. I have always judged myself much harsher than I would ever judge anyone else. It makes this situation all the more harder right now. Because I DO need help now, and I have to accept it for Jules' sake. Unfortunately, doing it all on my own is not an option right now. And somehow, I'm going to have to learn how to cut myself some slack. I'm not perfect. I will make mistakes. It's just so painful when I know my mistakes will affect Jules and not just me. Like if I don't account for all of her carbs in a meal, or I forget to give her a snack, or check her sugar. Sure, it's not the end of the world. At worst, she'll just run a little high, or a little low that day. But it bothers me so much, it's almost unbearable.

What's really important to us right now, is that everyone acts "normal" around us. The therapists at the hospital suggested that we refrain from using that word - normal. Jules might start to think that she's not. So Jason and I have been using the term "BD", as in before diabetes. We probably won't be able to use that forever as the kids will start to get suspicious and ask us why we are saying the letters BD all the time. What really drives us crazy is when people start talking about it in front of her. Do they not have any sense? I mean it's one thing if she brings it up, which she does quite often. She could tell you all about the pancreas and how hers is sleeping. She's so smart and wise. She's really quite remarkable. I don't want anyone to to treat her any different, because she is still the same old Jules - beautiful, stubborn, smart, sweet, determined, creative, feminine Jules. I get that people are concerned for her, and want to know how she is doing. But there is a difference between asking her in a light sing-song voice, "Hey Jules, How're ya doing?" and saying it slowly with a tilted head and furrowed brow. You know? And unfortunately, for us there is a lot of people who chose to behave with the later.

So, to get to the rest of the story, what does it mean for Jules to have type one diabetes? It means that her pancreas can no longer produce insulin for itself, which we all need to live. Everytime we eat, our glucose level(or sugar) will rise, and then our pancreas releases insulin and it comes back down. Since Jules' pancreas is "sleeping", we have to inject her with insulin. We have to check her sugar many times a day by pricking her finger. Jules does this now all by herself, using a tiny little device. We have to change the needle in it every single time. After her finger is pricked, we squeeze out a little drop of blood, that gets sucked up into a tiny strip, which is connected to our meter. It only takes a few seconds and then it will tell us her reading. A "normal" reading(there's that word again) is between 4 and 8. This is where we want our sugar level to be. We have to check her sugar before every meal, before snacks,before and after any physical activity like gym and of course when she tells us she is feeling "low" or "high". When Jules is feeling "low", she gets hot and pasty and her legs feel "wiggly". When Jules was "high"(before we knew she had diabetes) she was extremely thirsty and had an urgency to urinate.

The average day for Jules right now(it will change when school starts) is like this:

check sugar
eat breakfast
get insulin

check sugar
have snack

check sugar
eat lunch
have insulin

check sugar
have snack

check sugar
eat supper
have insulin

check sugar
have bedtime snack
have insulin

12am -check sugar
3am - check sugar

The midnight and 3am checking will eventually go away. Right now the doctor is just trying to get her levels better. There is also what they call a correction factor for her snacks. Right now if her sugar is > 15, we give her 2 units of insulin, if it is > 20, we give her 3 units.

Jules can eat anything at meal time, just like before (BD). The difference is now we have to know how much carbs she consumes. We have a sort of mathematical formula we use to determine how much insulin she gets. It will be different everytime, depending on what she eats. She is however, limited at snack time. She can only consume 15-20g of carbs at these times. And if she is high at snack time, then she has to have a carb free snack. Jules cannot eat at any other time during the day, unless it is "free", or without carbs. Meat and proteins are usually free, as are most vegetables.

Her insulin is not given in the old fashioned way of long needles and vials. She has what they call pens. They look a lot like a large pen. The actual needle is only 5mm long. This will change as she grows older. An average adult would have to use a longer needle. We change the needle on the pens everytime, just like on the finger pricker. A unit of insulin is very small. I think 1ml has 100 units in it. Don't quote me on that, but it is really, really small. She has two pens. One for the insulin she takes during the day after eating, and the other is a long-lasting insulin that she takes at bedtime.

And lastly, just to talk about pumps for a second. I remember hearing about kids needing an insulin pump and thinking, "Man, they must have it bad". As it turns out, you can't have type one diabetes worse than someone else. You either have it or you don't. An insulin pump is just an option. People get them because they feel it gives them more freedom. A pump is not surgically put in your stomach or anything, which again, I used to wonder about. What happens is a tiny needle is placed horizontally in your stomach, just under the skin. There is some tape covering where the needle is. The needle, which is no bigger than the one in your pens, is attached to a little plastic clip. The pump itself, looks a lot like like beeper or a cell phone. You wear it clipped to your pants. There is a little tube that runs from the pump and snaps into the clip attached to the needle in your stomach. It slowly pumps insulin into your body all day long. This replaces the long-lasting insulin which we now give Jules at night time. You still need to check your sugar and count your carbs, except now instead of getting injected with pens, you just tell the pump how much to give you. It saves you from getting needles all the time, because you only have to change the pump needle every three days. When you shower, go swimming,etc... you just simply click it out, and then later, click it back in. The doctors say that you get better regulation from a pump. But again, it is only an option. It does not mean you are worse off than someone using pens. Our goal is to get Jules a pump someday. Because it keeps you better regulated and because we hate to see her get so many needles.

I've probably overwhelmed you with information.... believe me, I know. It sounds like a lot.... and it is. But what I tell myself is that we are lucky. It could have been so much worse. Diabetes is manageable. She doesn't need any operations or transplants and most of all it is not a terminal illness. This is what I cling to, during those times when I get so sad. I do pray that one day in Jules' lifetime, they will find a cure. They have come a long way, the last few years. They advise you to not mention the search for a cure to Jules. We wouldn't want to give her any false hope. So I pray on her behalf too. But now, as I stated earlier, we have to try to move forward. It's going to be a slow journey forward, for right now. But hopefully sooner, rather than later, we will find happiness in a "new normal", or AD(After Diabetes).



THE END