Today’s Second Annual D-Blog Week prompt is: 10 things I hate about diabetes. Here goes.)
Okay so first, I just don’t like the word “hate.” There’s something corrosive about it; something that seeps into your hearts and just wins over you. I told my kids while growing up: don’t use “hate.” Try to put a more tempered adjective one whatever it is you are upset about. Dislike it. Be annoyed by it. “Grrrrrrr” it. But try not to hate it.
That’s pretty hard when Type 1 diabetes comes into your life – and the life of your child. But still, if I let hate crawl into my soul and take over these 14 years of helping my daughter grow up with diabetes I’d be even more scarred by all this than I am. That said, it’s good to verbalize what gets to you. So, here goes. From the mom of the person with diabetes point of view (I would bet my daughter’s are different. But she’s in the middle of finals at college so I’m not asking her today).
10) It bothers me when I realized that in a way, I’m living life in a kind of suspended animation. So much of all this depends on blind faith. We read that some people take perfect care of themselves and suffer complications; others are not as vigilant and live for decades without an issue. Yes, the right choice is to do all we can (because why tempt it), but it bothers me that there’s a chance of the unthinkable anyway.
9) It is hard – even after 14 years of practice – to take a deep breath and not throttle the people who say the nasty things. They don’t know they’re being nasty; they think they are helping. Things like “Well, it’s been a while. Aren’t you all used to it now?” And, “I read that there are pills your daughter can take now instead of shots. You should look into that.” How about the wicked one: “Is she regulated?” Gosh, I dislike that word. And of course, “My grandma died of diabetes. But . . . she ate jelly doughnuts. Just keep away from those.” Once at a youth soccer game someone said something about me needing to look into “getting her off those shots.” My sister – who was there – swears the entire field stopped all action and leaned in to hear how I was going to respond. I think I said something polite. But I’m sure I thought something mean.
Eight) It troubles me when I have to spend hours and hours on the phone with insurance companies fighting to get the stuff we don’t really want anyway – insulin and needles and test strips and canulas and site changes. Seriously. We’ve been with the same insurance for almost all 14 years and I still have to fight. One time when my daughter was little, the insurance company decided we were getting too many pump sites. (How to explain that you cannot just take the days of the month and divide them by three. Sites go bad. They get lost in bags. They get crushed when you are not careful storing them when you go skiing or to the beach or to wherever.) Finally I said to the woman on the phone: “Look, lady. These things stink. My daughter has to take a huge needle and shove it into her body to put it in. They are scary. We are not exactly stocking up on them to put them in birthday party loot bags.” She was humbled into stopping the fight. But it goes on. I just don’t like it.
7) It saddens me when I think of all my daughter has faced with grace – like lows and highs in school, figuring out how to wear a pump with a prom dress without ruining the look, the constant battles with me when she was a younger teen. I could go on and on at the moments I wish I could have just erased. And yet she goes on – with grace. It’s a proud sadness though.
6) It frustrates me when I see politics get in the way of working toward a cure; particularly when volunteers are involved. I know we can all be, umm, passionate almost to a fault sometimes, but never, ever should we turn against one another. There is nothing more pure than a person fighting for a cure. We should all respect and accept one another. Always.
5) It exhausts me when I let worry get the best of me. The other night, with my daughter 500 miles away and preparing for her final exams in college, I literally tossed and turned, got up and paced and tossed and turned some more all night long worrying about her. What if her bgs were high for finals? Is she really taking her shots when she is supposed to? I want her to come home with good grades AND with good labs like she did last semester. In a way I kind of miss when she was little and I controlled her world. I need to trust. And not let diabetes steal my sleep in this way and leave me cranky the next day.
4) It challenges me when I want to be burned out and just let it be. I want to free up the time I spend helping families and volunteering for a cure and just use it for something else. And anyway, who am I to think I can really make a difference? But in a way, my volunteer work makes me feel selfish too. It gives me hope and support and sometimes, power. And that, in the end:
3) Shames me. How dare I take anything positive from all this? It feels wrong sometimes.
2) It shocks me when I realize how all this can be so all consuming, even now with my daughter off at college. Diabetes seeps into every crevasse of your life, and kind of like the fine dust from the sheet rock when you do a home improvement, it is impossible to not find it in every corner, forever and ever. Things linger ahead and on them I can see the residue even now: Will my daughter find a spouse who truly gets all this and cares for her and supports her completely? Will she eventually have children and not have it be the most worrisome, stressful experience so far in her life? Will she find a job with co-workers who understand and embrace her despite all this? Will there be prevention before my grandchildren come along?
1) But it gives me such pride when I look at how my daughter lives. She’s not been perfect in her life with diabetes, but man has she been real. She’s strong, funny, interesting, benevolent, and in my eyes, so very beautiful from the inside as much as from the outside. So yeah, I hate diabetes, but I love my child it is in so much that I simply have to work with it until I can banish it.