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.
Sunday, January 06, 2013
Nolans 8th anniversary of having Diabetes came and went without notice. At some point that day at work, I remembered, and said something. We have a lot of talk about Diabetes at my work. I am a wound care nurse at a wound clinic. The majority of my patients are Type 2 Diabetics, and a lot of them are Type 1. When people tell me that their Diabetes is the worst thing that every happened to them, I tell them I understand. I tell them about my son. I don't always explain that he has type 1 because people usually ask. They ask his age. They ask how he is doing with it. They ask if he uses a pump, or shots. They always express concern for him, disappointment that this horrible disease could happen to a young child. They all seem to understand that he has the "bad kind"... What I notice the most, is the general concern, the immediate appreciation that they have the "better kind" because they might be able to get away with losing weight and taking pills. I don't experience a lot of sympathy on the flipside. I like to think that Type 1 Diabetes is an entirely different thing than Type 2. Type 2 is genetic, Largely. Not all my patients with Type 2 diabetes are obese. Only about half. Not all my Native patients are Type 2, but most are, thats true. Most of them are not overweight, much to the shagrin of parents of Type 1's everywhere. I used to get really angry when someone would tell me "My dad just found out hes got what your son has". But now, I just nod, and say, "Aw. Im sorry. Its really hard to make lifestyle changes at that age. I hope he does well, and if you need any info, it's all up in me brain.. feel free to pick it." and I let it go. Sometimes I differentiate. Mostly I dont. Why bother. Its a crap disease any way you put it. Its NOT the same, but the manifestations are. The complications, the struggles with insurance, and in a lot of cases, the treatments are the same. I always want to stick up for the Type2's. I feel like the Type1 community kind of hates, or resents them. There are so many Type2's... Gestational, MODY, Type1.5 etc. Some lucky people get both... no insulin and insulin resistance.... Its not all the same.... Except for one thing. Nobody asked for any of it. Not one of us. I think we like to blame the Type2, "you are obese, you kind of asked for it" Yes, obesity plays a part. For sure. But so do processed foods, and autoimmune familial history, and geographics, everything. Its not all about diet and exercise. I have patients who are very active, healthy, and at or below their recommended weight, and still, they found out that they had Type 2 diabetes... Maybe they had it for ten years... or more... without knowing... and then they show up at my clinic because they walked around the golf course with a tee in their shoe and didnt know it a year ago... and the wound will not heal. The point is... I get not wanting your childs Type1 confused with Type2... and its tiresome to have to explain it. But Type1 community... you have to remember that you NEED type2 to exist, and all the other kinds of diabetes that I have failed to mention. If Type1 had to stand alone, and the treatments did not overlap... We would not have the technology we now have... and even if we did, it would NOT be covered by medicare, and the insurance companies would not follow suit. If they werent so worried about having to pay for dialysis for all of those Type2s, stuff just wouldnt be covered as readily. Even though its still hard to get what we want from insurance... Imagine if we were as rare as Type 1 really is. Loads of insurance companies wouldnt even have a policy written for Diabetes if there were no Type2's. All your rinky dink "bc/bs of northern lakes of north dakota valley of the wolves" and "six rivers united health limited foundry of northeast west michigan excluding lakefront areas chapter of health" companies would not cover anything. Nolan was the FIRST type 1 on his insurance policy back in 2006... I had to fight for everything, as the plan was written for Type2's. He had two test strips covered per week. Some electricians made that decision when they purchased the plan. Im pretty sure my picture was hanging in the office at that company, with a check list of the six people that worked there so they could take turns taking my calls. We need each other, Diabetics... We might not all be the same, but who cares. Lets advocate for each other, take care of each other, and be good to one another. After all... thats what humans were put here to do.