Sunday, December 30, 2007
Now I have heard that this is not a movie for parents of diabetics to watch. It's very sad, they say. And they are right. In the beginning of the movie Shelby (played by Julia Roberts) was sitting in the salon chit-chatting with other women and her mom on her wedding day. They gossiped happily and playfully chided one another on topics varying from the quality of Louisiana lawyers to skinny-dipping as a form of romance.
Then along came a scene we are all too familiar with. Shelby begins to shake a bit and sort of zones out. She suddenly takes a turn for the worse and acts as though she is going to seize, which prompts quick and only moderately useful attempts at assistance. Mom, played by Sally Field, asks that juice be provided quickly and has to force Shelby to drink the juice, which is a chore by itself simply because Shelby is one of those combative diabetics. After a couple of glasses of juice Shelby begins thinking more clearly and takes stock of what has gone on around her. Her beautifully coifed hair is now a mess, and orange juice has smeared her makeup. She's apologizing with some vigor to her mother for fighting the juice. I quietly applauded the realism of the hypoglycemic episode while at the same time noting that the time-frame of the entire thing was probably a bit melodramatically-enhanced.
Then I promptly went into my bedroom and had a very brief, but thoroughly comprehensive breakdown. After all, in another 20 years or so, that could be Emma sitting in that chair suffering from a low blood sugar. What if her mom weren't there to help? What if I weren't? That scene truly brought a crushing sense of reality with type 1 diabetes. Even as an adult, you are sometimes completely dependent on the competence of others. What will we do when Emma goes off to school? What will we do when she wants to go out with her friends? When she goes to college? Gets married? Has......children....? And then what if, God forbid, one of HER children is struck with the same disease?
So many questions. So many unfortunate realities. Emma was not even 1 year old when she was diagnosed with diabetes. That means that even with tight control she could be facing varying degrees of complications before she is even 20 years old. 20 years old. 20....years...old.
I know that one day we will have to let go. But I don't want to. I don't now, and I don't think I will ever want to. I told Amy that I imagined us in our nineties with a 60 year old Emma still living in our house, one of us shouting at her, "You're pump is beeping!" I hope that day doesn't come, because I hope one day there is a cure. At the very least, I hope the Cowboys don't ever stink it up again so badly that I watch Steel Magnolias.
Friday, December 28, 2007
Thursday, December 27, 2007
With one of these?
My neighbor's girlfriend paid us an unexpected visit one day (and quite a frantic one) because one of their two (or quite possibly both) English Mastiffs decided to use her boyfriend's BRAND NEW Minimed 722/CGMS as a chew-toy. Knowing we had extensive pump knowledge, she brought her little tragedy over to us with slim hopes that we might be able to help. And we did help. We told her it was broken. He had worn it exactly once before going out of town for the weekend. Much to Minimed's credit, they did warranty the pump.
We have little dogs that very much prefer pump tubing to a whole pump. Though they both quickly learned that chewing on tubing comes with a swift and rather chilly rebuke. If they actually ATE Emma's pump or mine...well, there would be a tragedy of a whole other type.
Wednesday, December 26, 2007
"Got it, dad!"
That was the conversation I had with my 8 year old son on Christmas Eve. Evidently I forgot to have the same conversation with Emma, because there we were at 6:30 opening gifts...
Remember when you were a kid and you opened the box and a toy fell out, ready for hours of endless entertainment? Some of it required some assembly, of course. And that was part of the fun. Now things are different. Every toy made..all of them...are now bound into their boxes with at least nine miles of tightly bound heavy wiring. It's almost like someone into BDSM decided they would expand their fetish into toy-packaging. Seriously? I have a huge callous on my right index finger from untying no less than 650 of those wires. I didn't even need my lancing device this year; there was plenty of blood coming out of my fingers already! The worst culprit? Littlest Pet Shop. Every single one of those little beasts had at least two heavy wires binding it into place, and in case that wasn't enough, there was an additional piece of plastic with the same relative strength as dental floss. None of these served any purpose other than to irritate the hell out of every mom and dad in America.
"Dad, can I pway wif my wittlewest pet sop toys now?"
"Not yet, baby. I need to get my blowtorch out of the garage."
Somehow or another we managed to cut our way through all the packaging using scissors, three knives, four screwdrivers, and several bourbon-laced sugar-free hot chocolates; and yet I can't wait until next year.
Friday, December 21, 2007
When I got to the pharmacy, I felt a little loopy, but nothing too bad, so I chit-chatted with the pharmacist, Tyson, and then went out to the truck. Like a good diabetic, I tested before I left....56. So I go BACK into the pharmacy and call my wife to tell her I'll be delayed a bit while I treat the low. With shaky hands and glassy eyes I grab some liquid glucose and have a seat. The pharmacist, who happens to be a pretty good friend of mine looks over his little wall and says, "You OK, dude?"
"My blood sugar is 56, I'm gonna just hang out here for a minute."
So he walks around and sits down and we talk about how stupid it is that Bayer makes "Sugar-Free Aspirin." Seriously? Anything to entice the ever-growing diabetic market, I guess. Then like a good parent, he actually makes me test before I leave, and then he CALLS MY HOUSE to tell Amy that I have left and to let him know if I don't make it.
It's nice to know there are people in the world that really care isn't it?
Wednesday, December 19, 2007
Tuesday, December 18, 2007
Case in point, several years ago my wife and I went to Vegas (this was well before Emma was born, and before you ask, no she was not a result of our trip to Vegas). Anyhow, I was using an Animas pump at the time, and I took two extra infusion sites along with Lantus and some syringes "just in case." Well, "just in case" happened all in one blurry night. Somehow I managed to rip my site out getting undressed. Then I managed to mess up the other two trying to replace the one I ripped out. (On a side note, never try to replace infusion sites at 4 o'clock in the morning while you're in Vegas. You're not awake at 4am because you wanted to see the fountains at Bellagio one more time.)
So I spent the next two days in the very uncomfortable position of having to carry around a vial of Humalog and syringes. It was very hot in Vegas, and carrying that stuff around was not just real convenient. Not a huge deal, but now if I go out of town for even a few days, I bring a box of spare supplies big enough to carry me through a nuclear war AND make sure that someone has access to our house in case we need to have more shipped to us.
Worst-case scenarios have evolved into eventualities which have evolved into routine. Or something like that.
It's extraordinarily difficult to care for a 3 year old - any 3 year old, but one with diabetes presents her own challenges. It's not enough that when I am caring for Emma to manage her diabetes tightly, I must be even more dilligent about my own. My worst nightmare is to have a severe low when I am home alone with the kids. What would I do? What would they do? Brenden knows to call 911if I am home alone with them...but would he? What if he were outside playing, or in his room watching TV? He might not ever know his daddy was passed out on the floor.
Sadly, that is the reality of being a parent with type 1 of a child with type 1. We all make sacrifices for our children to make sure they are as happy and healthy as possible. The sacrifice I choose to make is to run my blood sugar on the high side when I know I will be home alone with the kids. My a1Cs before Emma was diagnosed was regularly in the 6.2-6.8 range. Ever since she was diagnosed, I have yet to have one below 7.
Fortunately, a severe low has yet to strike while I was home alone, and I am also lucky enough to be very aware of impending hypoglycemia. I have been as low as 23 before and still been aware enough of what was going on to treat myself. I'm not blaming Emma for my recent lousy a1Cs. I am responsible for my own health, but sometimes it's just not worth the risk.
Monday, December 17, 2007
Amy's basic argument was this: The ADA does not fight strictly for those with type 1; they focus their efforts on diabetes as a whole, which does make sense if you need to maximize your ad and fundraising resources. Amy, like many parents of children with type 1 really resent when people with type 2 compare their "type" to type 1. Really, they aren't even the same disease. So last year I was successful in putting off our helping to start a JDRF chapter here.
And then came along the preschool debacle. If you don't know about it already, here it is in a nutshell (a very compact nutshell). Emma was invited to attend a church preschool, then was uncermoniously un-invited after the director "learned" that there is insulin in her insulin pump.
To make a long story short, two members of the ADA's leadership council go to that church (and their wives work there) chose their church over my daughter (and in fact made heated phone calls to me demanding that we take down our slideshow from the Internet and stop posting the story). So I could no longer see myself being able to effectively serve in that organization any more and resigned.
Today I was presented with the opportunity to join a fledgling JDRF chapter in Lubbock. All "we" have right now are a few eager committee members with no one to lead, and the ADA chapter has already gotten wind of it and is trying to "welcome us into their group." So now the choice is this, do I join the JDRF and commit to years of hard work to building the chapter? Go back to the ADA? Just ignore it all and eat cookies? What do you all think?
Thursday, December 13, 2007
In my old blog, I spent some time on the concept of fairness. It's a rather notional concept. Who says that "fair" exists anywhere other than in gradeschool? I would argue that fairness does in fact exist, but not in any way that we can perceive in our brief time here on Earth.
There is one person I know that could make the case that life isn't fair, and that person is also my diabetes hero #1. Imagine for a moment that your father died when you were just a little girl from complications of type 1 diabetes. Now fast-forward some twenty years and hear that your husband has been diagnosed with the same illness that killed her father. Then move on another few years and try to absorb the fact that your precious nine-month old baby girl is also diabetic. You couldn't have written a more tragic script if you wanted to.
My diabetes hero #1 is my wonderful wife, Amy. Amy and I had our first date on New Year's Day 1993. We met the night before at a church lock-in, and I took her out for coffee and pancakes. When I took her home, it was all I could do to summon the courage to ask her out on a date. I mean, look at her, she's GORGEOUS, and I was just one of many potential suitors. Luckily for me, I asked, and she said yes. The rest, as they say, is history.
You cannot imagine even for a moment what it's like to be her. When Emma was diagnosed, she didn't just accept the treatment plan given by our doctors, she dove in headfirst and learned everything there is to know about diabetes. She quickly learned that what we were doing (NPH insulin) was not going to work and pushed HARD to get Emma on a pump.
"They'll never agree to it. They never put little kids here on pumps."
Boy, how many times did we hear that one? A lot. They clearly understimated my wife. Within a few months of diagnosis Emma was on a pump. She wasn't even out of diapers yet. And yet there she was with a tube sticking through her onesie. Truly a tribute to a mother's love for her baby. Now, at age 3, Emma is on a CGMS and has better A1C reports than I do. Remarkable.
You see, she's not just a wife and mom. She's also an endocrinologist and a CDE. Go ahead. Ask her anything about diabetes. Anything at all. She knows it. Just ask all the grateful parents over at Children With Diabetes. I sometimes refer to her as Emma's pancreas. And she really is, in every sense, Emma's pancreas. She counts the carbs, gives the insulin, makes adjustments, etc. It's truly an inspiration to watch.
No. Life is certainly not fair. It's just not right that one person can be stricken three times in her life by the same disease without ever actually having the disease herself. It's not fair that she had to quit a very successful career, and sacrifice many nights of sleep, and worry constantly about her daughter's future, and so on and so forth.
So it goes without saying that my #1 diabetes hero is my beautiful wife, Amy. And no, it doesn't come with a cash prize.
Tuesday, December 11, 2007
What is there to say? She was diagnosed when she was just nine months old, and has never known a birthday where her cake didn't come with a shot or a pump bolus. She endured fingersticks, infusion site changes, ketone sticks, sensor site changes, and oh by the way, all that other stuff that comes along with being 3. Imagine trying your very best to potty-train when your blood sugar is 250 and all you want to do is drink water and pee. She's endured strange looks from waiters when we order her a Diet Coke (yes, we're stage parents trying to thin her out before her next shoot), callous and rude employees at theme parks, and was even dismissed from a church-run daycare because the employees didn't know that insulin pumps inject "medication."
And yet if you give her a toy, she happily plays with it. Give her something to eat, and she eats it. Give her a warm bath and she'll soak in it. Give her our two dogs and she'll laugh and giggle while they bounce all over the house.
Emma's my number 2 hero just because she's Emma.
Friday, December 7, 2007
Thursday, December 6, 2007
Wednesday, December 5, 2007
"Hey man! We're gonna go play some Pac Man down at the arcade, wanna go?"
"Yeah! Let me get my skateboard first. Oh, and I need an extra pair of pants to hold my pump in place!"
Yes, we have come a long way. And while the pharmaceutical and medical supply companies have their issues. Imagine where we'd be without their research. Diabetes hero #4 in my countdown: the brilliant minds that have given us Lantus, and Humalog, and Novolog, and pumps, and the CGMS and so on. Thanks folks. I owe you one.
Tuesday, December 4, 2007
Monday, December 3, 2007
Let's start out with #5-
The Diabetes Blogosphere. There are so many brilliant minds out there that express themselves so well and are a daily inspiration to me, and in fact motivated me to get away from traditional blogging and get into diabetes-related content. First and foremost there's Kerri Morrone (that's MOR-OWN) over at Six Until Me. I've been hooked on her blog since the first day I read it. She is truly a talented writer, and I make sure to log on every day. Hers is more of an emotional outlook on like with diabetes. The highs, the lows, and those days where you're just fed up and don't want to do it anymore. I consider Kerri to be the founding Queen of diabetes blogs.
Then there's Amy over at Diabetesmine. If you're looking for a technical blog that will keep you up to date on all the latest research and controversies within the diabetes world, that's the place to be. Amy and I share something that very few people do: we're both type 1.5 diabetics.
My good buddy Bennet at Your Diabetes May Vary. Bennet and I share a lot in common in that we tend to take up whatever "cause of the day" there might be in the D-world, and he's not afraid to tell it like it is. He and I "met" over at the CWD forums.
That brings us to the final diabeted hero of the blogosphere (even though it's not really a blog): Jeff Hitchcock founder of Children with Diabetes. His website is so influential and helpful that parents of newly diagnosed children are given the link to his site. It's far more useful for the newly diagnosed than the JDRF or ADA sites will ever be. I would be willing to bet that the CWD forums have saved a child's life or two...
So there's day one in the books. I know that there are hundreds and hundreds of great diabetes blogs out there. So, if there's one that you think I should be reading, please feel free to drop me a line.
Sunday, December 2, 2007
So I posed this question to the parents over on the Children with Diabetes forums, and asked them if they would want this test done on their other children that do not have diabetes. Predictably, some said yes, some no. All for very good reasons. Then as a follow-up, I asked if the test came back postive, would they tell their child? I think that for the most part they would, depending on the age of the child. They may say no, but everything the parents say and do will say yes.
Many of them have said things along the lines of, "I wouldn't want that dark cloud hanging over my child's head," or "why would it matter if I couldn't prevent it?" Both very valid points. When I first posed this question, I expected to hear "Wouldn't that be like knowing the day you would die?" And of course it's not. Diabetes isn't a death sentence anymore. I would surmise that it would be like knowing the date on which you were going to be in a serious car wreck and forever be forced to use a walking stick.
So the big question is then, if there were a lab available to us and we could have Brenden tested if we wanted to, would we do it. My answer is absolutely yes. Some of the parents say they don't need to know if the antibody is there because they would recognize the symptoms right away. To that I would say, why wouldn't you want to clear up the uncertainty one way or another if given the chance? I mentioned the "block cloud" earlier, and I would argue that our non-diabetic children already have that black cloud- test or no test. How many of us have tested our non-D kids when they pee more than two times in an hour, or are super-tired and maybe a little grumpy one afternoon? We all have, of course.
And if his test were positive? That's another blog for another day.