It's the Fourth Annual Diabetes Blog Week! So all week, I, and lots of other D-Moms, will be blogging about a different topic each day. You can check out the topics and all the posts for each day here: http://www.bittersweetdiabetes.com/p/2013-diabetes-blog-week-topics-posts.html
Today's topic is: Share and Don't Share
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?
I feel so lucky now to have found a new endo that actually is supportive of what we are doing. Our last one wasn't. So what I would write here is completely different for both of them. I think I'll share a little bit of what I would say to both of them just in case someone else out there is in the same boat I was in for the past couple of years.
To our old Doc:
I wish you could have seen me up late at night, say about 2:30 AM. I hadn't been to sleep yet. I'd finished with my busy day of homeschooling my 2 youngest kids and my 4 yr old niece and 5 yr old nephew. My youngest had gone to sleep first. He's my T1. His numbers, as usual were all over the place that day. They had been for a long time - great one day then tanking the next, despite my best efforts to everything "right." My middle child took a long time to get settled into bed. At this time her OCD/anxiety were still not under control. She had a whole bedtime routine that we had to do nightly just for her to be able to sleep. It usually took about an hour (or two). But finally, she was sound asleep too. And then of course I had my oldest. A late teen, trying to navigate the world of jobs, college, life, who still needed late night talks with mom. So on this night, somewhere around 2:30 AM, maybe it was later, there I was sitting on the floor of his room by his bed after finally getting everyone settled down to sleep. I had just finished changing his pump site, again. This was now an every other day occurrence although we were told the sites should last 3 days, and I had heard people say sometimes 4 to 5. I then began the process of transcribing all of his blood glucose numbers, insulin boluses, carb amounts entered, etc., into his daily log book which of course I was WAY behind on. I felt BIG guilt at this time about being behind on this. It was probably contributing to his roller coaster numbers. If something was wrong with his diabetes, it was my fault. I must have been doing something wrong. Or not enough. Or . . . So anyway, I got all the numbers in that logbook, maybe it was 3:30 by now, and I started crunching, searching for trends, trying to figure out what was going on, why his numbers were so erratic, what changes I could make, what I could DO.
Why did I have to figure it out NOW??? Because I our appointment with you, dear Dr. was the next day, and the rock in the pit of my stomach was already sitting there nice and solid. I knew how it would feel to hear the high A1c number. I knew you would have plenty of questions for which I would only at best be able to stumble over the answers: "Here on June 23rd, why would you test him and correct him at 3:20 when you had just tested him at 1:00?" "Uh . . . . Ummmmmmm??? I don't know doc. I don't even remember what happened on June 23rd. Maybe he told me he felt low at 1:00? Maybe I had a feeling he was low? Maybe we planned to eat at that time and then he dropped his entire plate of food on the floor and we had to go to plan B?" The truth is I have NO IDEA!! Maybe life happened doc!
But I digress . . . So there I was crunching numbers, looking for trends, with a rock solid stone in my stomach, and I finally saw something! There it was, as plain as day! And the trend literally went back almost two years!! Site change. Beautiful numbers on day one. Numbers start creeping up on day two and are high by the end of Day 2. He could not go more than a day and a half on those Teflon cannulas without his numbers creeping up! Mystery solved!! And it was right there in black and white. I went to bed with some relief. Now I had something you could help me with. Surely you would see it too. Whew!
I wish I could say everything went my way, but we both know it wasn't quite like that. When we went to see you the next day his a1c was 8.9. Punch. You questioned me all up and down that log book. Punch. You told me I was checking his blood sugar too often (7-10x/day). Punch. You told me I needed to let him have time away from his diabetes. (What??? As if somehow I was creating all of this? He wasn't privy to all of my worries and concern. All of my logging, reading, was done when he was sound asleep!). Punch. You wouldn't see the trend I saw. Punch. You said, "Do you just want to switch back to shots? It sounds like you're not to happy on the pump." ("Oh yes, I'd much rather poke my kid with a needle 10 times a day that once every other day doc, thanks for the idea.") Punch. You quickly looked at the numbers and suggested some quick basal changes and then were out of there. Punch. Oh, I forgot. Before you left, you told Josh that you wanted him to try to start doing his site changes without EMLA (numbing cream) by the next time he came back. Punch. But guess what. That was last punch you were ever going to make. Because NO ONE IS GOING TO PUNCH MY KID. If there is a pain-free way to get a 3/4" needle stuck into your stomach every 2 days and he wants to use it, he's damn well gonna use it!
Doc, I wish you could see how much I just needed your support. How hard I was trying to do everything right. How much I read, studied, pondered. How much weight I bore on my shoulders. How there is no real word to describe the sick feeling you have of the looming threat of nightly death. How the concern about the future effects of each high blood sugar number adds extra weight to the burden I carry every day. How hard it is to let him out of my site knowing that it only takes one mistake for there to be life-ending results, but at the same time knowing that he needs so much to be able to be a regular kid doing regular things. I wish you could see that I was not the enemy. That if what you really wanted was for my son to have the best health outcome, then you needed to be on my side, cheering me on, showing me what I did right, and helping me when I made mistakes, instead of accusing, reprimanding, demeaning, belittling, and ignoring me. I wish you knew that if it wasn't for all of the awesome support staff: the nutritionist, the pump specialists, the psychologists, the nurses, and nurse practitioners, I would have left your office a LONG time ago.
To my new Doc:
I hope you know how grateful I am every time we see you that we found you. How thankful I am for my support group for recommending you to us. You have been nothing but supportive and caring and on our side from day 1. I always feel that you are routing for us, and that you understand that life happens and that Diabetes doesn't play fair. When it changes the rules of the game, you always have new ideas to try. You don't blame me when my game plan isn't working anymore. I'm thankful that you allow us the opportunity to try new technology that we couldn't afford to use on our own. And mostly that our favorite nurse practitioner from our old doc miraculously ended up working with you now! I guess I wish you knew all of things above too, but I think that you already do. :)
Things I hope you don't see:
Well . . . these are probably the usual -
- That I only change my lancets when they stop working - oops!
- That sometimes I forget to bolus. I don't know how. We just get busy and a bolus get skipped.
- That sometimes I'm unorganized! I run out of sites! I run out of insulin! How could I let that happen? How am I not on top of that?
- I hope you don't ever have to see into the dark heart of hearts scary world of this disease with your own beautiful boys. It's not something I would ever wish on anyone. EVER. It exhausting, heartbreaking, sometimes hopeful and uplifting, sometimes inspiring, but at this point never ending, and for this reason dear doc, I hope you never ever go there. . .