November 9, 2010

It's D-Blog Day!

The topic this year is: 6 things you want people to know about diabetes. I could fill volumes with what I would like the people in Noah's life to know about his disease, so breaking it down to 6 is a bit of a challenge, but here goes.

1. Type 1 diabetes is a tough disease to manage. From one day to the next, blood glucose can fluctuate with seemingly no explanation. It could be something as simple as stressing over a math test, or eating breakfast a half hour later than usual that can send blood sugars roaming out of the comfort zone and into the danger zone. Chasing a high with a correction bolus, water and exercise sometimes just plain doesn't do the trick. The same goes for pesky lows sometimes, and it can be frustrating knowing that through all your best efforts, diabetes is essentially blowing raspberries at you behind your back.

2. A good thing that came out of this journey is the overabundance of support that's available within the diabetes OC. As the mom of a newly diagnosed little boy 5 years ago, I was pretty much lost in a new world I didn't know how to navigate. My husband and I felt isolated not knowing anyone with whom we could identify. What we needed was someone to ease our fears and let us know that we weren't totally screwing things up. We have received so much help from so many people over the years with everything from recipes, to 504 plan advice. That kind of support is priceless and we are truly grateful.

3. Insulin is not a cure. I saw this on a t-shirt once, and it has since become my mantra any time an opportunity comes to raise funds for research, or to simply answer a question for someone who wants to know more about diabetes. So much more can and will be done in the way of research. For now, insulin is what is available, and we look so forward to the day we can have a more permanent solution. I'm hopeful it will happen in Noah's lifetime.

4. Insulin is the thing that's keeping my son alive.
I can't stress this enough to the insurance company who is refusing to allow us more than 1 bottle per month. When that vial gets low, I get mad and resentful at the fact that insurance companies will practically give away other drugs that to me are frivolous (Viagra, Cialis) and non life-sustaining, but they give me crap about how much insulin Noah is going through. It's not right.

5. We're lucky to have such a constant emphasis on Noah's health and diet. I always say he's one of the healthiest people I know. We have learned how to help him make good food choices, and he has such a healthy attitude towards what he eats. We have always steered him towards trying new things, while at the same time never making him feel like any food is "off limits". He gets to have cake at birthdays and candy at Halloween just like any other kid, but he knows that it's because he makes the right choices all the other days that creates that perfect balance.

6. Type 1 diabetes is a bully and a sore loser. It tries to be all badass, throwing a high blood glucose at Noah right before bed, or surprising him with a nasty low the minute he sits down for a quiz at school. Noah is stronger than diabetes, and always manages to get up in it's face, ,bring his A game, and win in the end. What can I say? The kid is good.


Bernard said...

Lea, thanks for a great post. I hope you're all doing well, especially Noah. Are you serious that they only give you one bottle per month? What kind of crap is that? What type of insulin are you using these days?

shannon said...

Thanks for sharing! I especially liked #6!

Lea said...

@Bernard: We're all doing pretty well, Noah especially. How have you been? I hope you and your family are well.
He's on Humalog-We tried to find some kind of loophole in the rules, but the insurance co. is stubborn.

Sandra Miller said...

This was a wonderful post, Lea.

Like Bernard, I'm shocked to read that Noah can only get one bottle of insulin per month (Joseph goes through three!).

I can see how insurance companies get away with limiting strips (though it infuriates me when they do), but insulin? That's insane! And really, really scary.

Meri said...

True dat! Diabetes is a big ol bully! A bully who likes to throw epic temper tantrums!

Allison Blass said...

One bottle?! That's it?? What if breaks?? That's inhumane!

Bernard Farrell said...

I'm glad to hear Noah's doing well. I'm fine, doing a lot more exercise which is good. I think maybe I'll try a triathlon again next year.

Reason I asked about the type is that I can always spare some of mine, but I'm using Apidra. Can you endo's office give you an extra bottle from time to time? I agree with Allison, one bottle is way too dangerous. What kind of crappy 'insurance' is that!

Lea said...

Thank you for offering Bernard- that is so nice of you. It's an on-going battle, but I'm not backing down. If I have to be a royal pain in the ass, so be it. The doctor's office has been really supportive, and they have told me that Noah will never have to be in need if they can help it, so that's reassuring. I'm still fighting, though, and that makes me crazy. There should be no reason to fight when a child's well being is on the line.