Tuesday, November 4, 2008

The walk 2008

Saturday morning we participated in the 2008 JDRF walk for a Cure for our second year. Maddison was asked to come on stage for the opening welcome by the AZ Diamondbacks President, Derrick Hall himself! (she had been on stage with him previously at another JDRF event)She didn't have to say anything, she just held the flag for the National Anthem and threw out some T shirts and baseball caps to the crowd. She was very proud that they announced her name as an example of why we all set out to walk for the Cure. Maddison says she felt like a "very important movie star!" Our team "Maddison's Mutts on a Mission" had about 30 walkers this year and of course we had to bring our "Mutts" Harlee and Roxxie.

We nearly doubled our fundraising goal thanks to some unexpected donations just days before the walk! I can't seem to thank our friends, family, or neighbors enough for their generosity and support, Thank you all so much for yet another great walk experience!

Maddison had her yearly Endo appointment yesterday. I was completely shocked to see her A1c come back at 7.2% being that she runs much higher at school. She hasn't had many lows either, so I guess I should feel like I am getting SOMETHING right somewhere. (Must be all the sleepless nights!)I was preparing myself for an A1c around 8.0% by reminding myself that I have tried my best to manage these last 12 crazy and stressful weeks of school. Of course I was telling myself one thing but honestly feeling like a complete failure. As always, despite a great A1c I still feel like it isn't good enough, and I know it never will be. I know my expectations are not realistic when we are talking about an 8yr old growing child, but in my heart I don't think I could ever feel satisfied if her A1c is over the 6% range. Right now anyway, I just can't. I expect more from myself, I expect to figure out every number. I know it isn't possible and I know there sometimes just isn't an answer. But knowing this doesn't change how I FEEL. I'm happy with the A1c, don't get me wrong. Maybe in the years to come I will realize I have to give in my unrealistic expectations, and no, I will not consider the CGMS at this time. I just can't imagine jabbing Maddison with another needle and having her attached to another component just so I reach my expectation of a lower A1c. I certainly couldn't handle another medical device to learn about, obsess over and troubleshoot. That wouldn't be a healthy thing mentally for me to take on right now.

So, our regular Endo is out on Maternity leave and Maddison had to see a new Doctor. He was very nice and listened to my concerns about Maddison's highs at school. Of course being the Doctor he is supposed to offer his suggestions on what we can change to manage those highs. And, I was offended. Ok, maybe not offended, but I get very irritated when all they can do is offer advice that I have already tried. I mean, what do I need these people for anyway? I know if we were to ever have an emergency situation I would NEED them of course, but geez. At this point in our relations I have no idea what they actually do for us except write our prescriptions. It just freaks me out that we, the patients with Diabetes, actually know as much about adjusting our life saving medication as the Endocrinologist! Is there any other serious disease that is as self managed as Diabetes? I mean really!? The solutions to the high or low numbers are obvious as far as what we as Diabetics are taught to adjust when seeing the patterns. We all know many times the obvious adjustments don't help, or worse, we induce a dominoe effect making all other numbers become out of whack. I don't think Endo's realize this happens often when making changes. So, it would have been nice if the Endo asked me first WHAT adjustments I have tried, and then offer his advice. That would at least make me feel like they know I am not a clueless parent. I guess I am looking for some acknowledgement that I am a parent that has educated myself by spending the last 3 years being obsessed with knowing all there is to know about managing Diabetes. Heck, I think we all know we have earned a CDE by now based on learned experience.

So, of course all he could offer as advice for school day highs was everything I have already tried. I was hoping he would have the solution or mention something that I never even took into consideration. He tried to convince me to change Maddison's basal rate back to the higher level (.15) for school days. I explained that when I made those basal adjustments even by small half hour increments Maddison would have too many lows. I pointed out that her sensitivity to insulin is 220 during the day and a basal adjustment did help on her more stressful days but crashed her on days when she felt good being in class. I mentioned the times I adjusted ratios, correction factors, location of pump sites...you know, the billion things we try. I would have loved to hear that he could cure her stress in the class room. That would solve the problems with highs for sure. No such luck. Yet another Endo appointment that was a waste of my time. Next time I just want the A1c result and I will spend that half a day doing something else that is at least productive.

I guess we are always left to continue adjusting and managing our Diabetes based around our own knowledge of self. I think we should call Diabetes "Self Managed Metabolic Disease" Maybe then we would earn some credit, CDE sounds nice, doesn't it?


Lynnea said...

I just found your blog today...but I'm wondering if you are reading my mind or what? I say the exact same stuff all the time..especially after endo visits. I wonder when my degree will come in the mail!

Scott K. Johnson said...

Very cool that she got to be a little superstar!

I too don't get much help from my endo. Lab results and prescriptions is about it...