Wednesday, November 20, 2013
Some day I will write a book detailing the nine million ways in which my son has been discriminated against because of his diabetes. I will talk about how the school, the city, the police, a judge, teachers, social workers and even friends have turned thier backs on him, ignored care plans detailed about him, decided that they know better how he should live his life. Some day, when I have the strength I will. Today, I will explain only a few surface scratchers that I have endured only recently. "Why is his sugar so high?" This is one that gets asked a lot. Oh his sugar was 355 and he was in school and his teacher decided to power struggle with him in liu of following his care plan and giving him some water, a place to pee and allow him to do an insulin bolus. I tell a friend, who is lovely, but even if I tell another nurse, or a family member, a neighbor... Why was it so high? "Because he has type 1 diabetes." Please don't make me do this. Please do not tell me what I know you are going to tell me, "well, Jeans daughter has type 1 diabetes, and her sugars are good" *sigh* you did it. Im sure they're not perfect, and its likely that her sugars are up in the 400s here and there, just like his was today, but Jeans mom is probably smart enough not to talk to Non D people about D. I explain that his A1Cs have been at target. I explain that non compliant type 1 diabetics are the dead ones. I explain the negative feedback system of human endocrinology, I explain I explain I explain.... And I am tired of explaining. I am tired of handing out leaflets and making out care plans. I am tired of trying to get the world to understand that "controllable" means still walking, not Non diabetic sugars. I am tired of trying to make people understand that the word "stabilization" is a freaking joke. People, I have found, on many subjects, ask questions merely to verify what they already know. They already know all they ever will need to on diabetes, unless a loved one gets the lovely surprise membership to club D. People simply do not want to know. And even if they do, diabetes is complicated. Its not going to stay in their head, and they will ask again. I used to wonder why deaf people (in general) only wanted to be around the deaf community. I used to think they were scared. But now I get it. I don't want to talk to anyone about diabetes anymore. I only want to talk to diabetics. I only want to see the look on a diabetic persons face when they realize I am not going to ask them "do you follow your 1800 calorie diabetic diet?" I am one of them. I get it. And when they know I get it, the floodgates open. My patients confide in me. They know that there is maybe not another nurse around that will get it. They ask for me. I am tired of having patients come to me with ten years of diabetes under thier belt, and never have had diabetes education. I am tired of insulin dependent diabetics telling me that they got fired for taking too much break time treating low blood sugars. I am tired of hearing "that patients wife is really pushy" because she advocates for him and his type 1 diabetes. I am tired of explaining that I cannot possibly explain diabetes to anyone anymore. Now I just say its magic. He passed out from magic. He is in a bad mood because of magic. I tried to smear him in oil and wrap him in bacon the way they used to treat diabetes in the old days, I tried, but his sugar got high from magic. I want to hide sometimes. I want to tell the world that his diabetes is his business and questions will cost them ten dollars a piece. I do not want the diabetes to go away so much as I want people to respect it. I want people to stop saying "you can control" it on commercials for blood sugar meters. I want it to be understood. At least to some degree. I want Wilford Brimley to go to hell. I want "no more sticking your finger" to go away. I want people to stop thinking they know. But those things wont happen, so sometimes, I want to talk only to people who understand.