Wednesday, November 20, 2013

question of the day

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

My D kid

Nolans last visit to the E.R. for fluids. 

1 vs, 2

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.

Monday, October 01, 2012

Letter to Diabetes

Dear Type 1 Diabetes, I would like to personally thank you, as a mother, a human, a nurse, and a... redhead, for all the immense joy you have brought upon my family. I think the greatest thing that you have done in the past eight years was completely stunt my sons ability to function on several occasions.... I appreciate that, because who wants a kid with a big head, walking around thinking he should be able to "breathe" and "walk" and "have a potassium level that is compatible with life", you know? kids are cocky nowadays, with their newfangled gadgets, and thier earbuds, and Iphones, and insulin delivery devices... Im just really glad that someone is there to put them in thier place. I also would like to thank you for COMPLETELY BAFFLING ANY AND ALL INSURANCE COMPANIES AND/OR MEDICAID/MEDIPASS/MEDICARE. Thanks to you and your befuddling unpredictability, Insurance companies can really just get away without having to cover those pesky insurance claims due to what is only known within the DIABETIC community as YDMV. (your diabetes may vary). I mean, lets face it, 'Betes, (I can call you 'Betes, right?) if you were predictable in any way ever, then they would have to cover diabetes treatments without question. Those pesky diabetics would possibly get an edge if they were not constantly digging in their pockets to cover thier necessary health care essentials, and maybe one of those little screwballs would rise to some sort of authoritative position in this world and god love us... THEN what? I mean, really, can we really have any of those "too sweet for my own good" jerks making laws and such? I think not. So, thanks for being to confusing for most people to understand, and thus, write any policies regarding. Thats been awesome. I would like to personally thank you for immediately picking up on my sons pump occlusion last night, and spiking his sugar to over 600 for half the night. The sound of massive amounts of vomit hitting my wood floor was really, a great way to wake up... and I totally love to watch my still sleeping son lie on his side and projectile vomit all over himself. Thats neat. appreciate that. Without you, he would never know the joy of peeing on a ketone stick when his vision is too blurry to even focus on the stick. Thats just a riot, really... we have so much fun with those madcapped and zany moments! Its like, "what am I supposed to pee on mom?" OH gosh, I chuckle just thinking about it. Really, Diabetes, I think youre just so incredibly NEATO for all the nifty things you have brought into our lives. I love when his blood sugar gets so low that the adults at school think he is acting up and scold him or send him to the principals office by himself. Thats Such a HOOT! I cant possibly start to name all of the fun things you provide. But since your so awesome, here is a start. Lipodystrophy Renal failure Dehydration Headaches Nausea Blindness Neuropathy Non-healing diabetic ulcers Injection site infections finger callouses abscesses infection brain damage vomiting amputation polyuria polydipsia muscle wasting subcutaneous atrophy impotence brain swelling ketoacidosis infertility miscarriage diarrhea heart disease stroke The list goes on.... Oh gosh, Betes... Thanks for all these things... without you, Life would be so stinking BORING. From the bottom of my heart, Diabetes... Thanks so much for all you have done to enhance our lives. On behalf of my son, and everyone who gets the pleasure of your lifetime visit... Thanks. thanks a fucking lot. Sincerely, Mary Jennifer Dean, RN.

Wednesday, September 26, 2012

I was talking to my oldest about my middle child the other day. I was trying to explain to Nolan why he could not go to the park with his younger brother Patrick and Patricks friends Michael and Elijah. "Patrick needs alone time with his friends without his older brother stealing the show, Nolan" "I wont steal the show, mom, thats stupid." "oh I have seen you steal a show or two and Patrick needs time to not be in your shadow" "Thats not even true mom! Patrick gets all kinds of attention!" Not really though. Patrick, 12, was technically the youngest child until he was 8. Then came Lily. The adorable little sister, all smiles and hugs and Shirley Temple personality.... and Add that to Older, handsome brother with a serious and chronic medical condition and a bad boy image... (girls dig that, the vulnerable rebel thing he has going, with the punk rock attitude) Patrick is living, for the most part, in the shadows of both. "Mom, so what?" Nolan argued, "Patrick got all the attention until Lily was born, and I mean ALL of it... for eight years!" And there it was, in front of me, for the first time ever, and as the thoughts were falling into place, like Tetris pieces.... the words were coming out of my mouth, "Not really Nolan... he was the youngest child until he was... Lilys age... Until he was 4... He got all the attention until you got diabetes." Nolan opened his mouth to argue but then what I had just said registered... I continued, "Nolan, patrick took a back seat to diabetes on the day you were diagnosed... and so did you... so did everything... but to him... it was YOU getting all the attention... It was YOU that mom and dad were giving all of our concern and attention to... everything was all about you. Patrick just faded into the background, and he really, honestly... He took it like a champ and so did you." Nolan didnt ask again to go to the park. In some ways I am shocked at how long it took me to figure that out. I know, though, why I wasnt figuring it out... I was too busy... with Diabetes. It keeps you busy... invested, every second of every day. In your sleep. It sounds like melodrama, but it is all true. Diabetes is not just a mealtime problem, a food intake problem, a "how much insulin do i need" problem. Diabetes is a constant worry. Diabetes will eat your soul if you let it. You can become so obsessed with Diabetes that you cannot see the child through it. Numbers will come at you in your dreams. School nurses will call you with questions that baffle you... It is like a nagging parasite. It needs your attantion all the time. If you forget, youll remember via guilt pang or medical emergency. Diabetes is never "controllable". It will take your attention away from everything. Patrick was a middle child much earlier on than we thought, because diabetes is exactly a newborn child. The only difference between having a newborn child in the household and Diabetes, is that a child, eventually grows up and requires much less attention and supervision as times goes by. Diabetes never makes it past the toddler stage. You still have to make sure its not going at the outlets with a fork. You still have to check its pants for poo. Diabetes robs ALL children in the household of a childhood, of doting parents, or even attentive parents. Though it hardly warrants a place setting at the dinner table... Diabetes always wedges itself in, usually between mom and her meal... but it is always there. Invasive, at least. Patrick is an amazing middle child. A Piano player. A boy who has been drawing house plans since he was 7. A boy who is sensitive and funny. Very quick witted and anxious to know more about people. Patrick Dean. My middle child. He is an amazing young man.

Sunday, August 28, 2011

Diahbeetus

In a few short months, Probably, maybe even now, Nolan will have been diabetic for more than half his life. I wont lie. It stinks. But there is a glimmer... at the end of the diabetic tunnel. A1c has remained in the single dijits... Go ahead, "tsk" all you want about that... I know my kid and I know that is an accomplishment. It was so bad for awhile that I feared someone would report me.
He hid his pump, He lied about sugars. When i went to check his meter, he would take the battery out. it was ridiculous. Arguments every day.
Locking myself in the bathroom at the roller derby in Iowa City and having a good cry... Watching my kid not care....
But now... He has figured out that he has to take care of his sugars if he wants some independence.
I never punished over diabetes related stuff. But, there are things that he cannot do if he is not taking care of it.
He can't stay over at friends houses, or leave to go ride bikes with his friends all day. or to the skate park for hours at a time.
He either decided that he wanted some independence, and started checking without being asked, and bolusing without being asked... Its possible, and preferable that he cares about himself a bit more... but I am going to take what I can get.
He has been out all day... riding bikes with his friends.
He takes his kit with him, and though he seldom checks when he is out, he does check before he leaves and if I call him.
He loses his phone if I call him and he doesnt answer. He will lose it for up to a week, depending on how mad I am, and how many times I call. If he calls me right back, then I forgive.
He is impressing me. He shows up on time and even early.
He does take risks... wants to live on the edge. I am not sure if it is something that goes on with oldest children, or if it comes from having an incurable disease.... But its who he is. I cant stop that.
I feel like he understands sometimes why I am strict. Most of his friends get to run willy nilly all day long. But thier parents, I think... are pretty naive.
They don't worry about their child collapsing from hypo or hyperglycemia. They also, maybe, don't know all the tricks and lies and naughty things kids can pull on thier parents. I know because I was a very sneaky and manipulative little girl.
I lied to my parents about where I was. I went to slumber parties that were actually keggers when I was younger than Nolan. I rode in cars with boys two years before I was allowed to date. I drank. I smoked. My parents could never smell it on me because they were smokers. Whats to smell?
When I was accused I pulled the old, "I cant believe you don't believe me" bit, and worked my parents guilt... They ate it up... because they wanted me to be good.
I feel like I eat nothing that he serves me.   And I couldn't care less if he is good by anyone else's standards.   I want him to be,  simply,  to keep existing. 

Friday, June 17, 2011

I have never thrown away a vial of insulin. Not one. I have so many. I am not sure what I am hanging onto them for. I had a few ideas of what I would do with them and Im not sure I want to now.
At one point I was going to fill them with something special, and maybe sell them for a a fundraiser, but I never knew what.
I have hundreds of vials. Fat little Novolog vials, and Long Lantus vials, maroon decoreated Humalog vials... Hundreds.
They take up space...
I open the drawer that I keep them in and I am not sure what I am going to do with them, so I shut the drawer.
I sometimes gaze at them and think about how these little glass bottles have affected our lives.
They have all had a copay.. ten dollars, twenty dollars, a dollar, depending on the insurance we carried at the time... I dont keep them because of the money... they have no monetary value.
Most of them have a date written on them... either in permanent marker, or in pen, on a small piece of torn paper, and fastened under a tegaderm. The date it was opened.
My sons life, accessed through a rubber stopper... day after day after day.. month after month, a needle, plunged through rubber...
and it leaves no trace at all....
Not one tiny dot, the route to his survival... and the eye cannot see it.
Still, air tight after accessed.... Like it never happened... like the diabetes is from a different reality, and like it it was never there.... a whisper in a crowd.

My husband knows not to throw them away. He tried once...
but I cant, somehow...
I just need them...
They are a comforting, somehow...
and they are in a drawer.

and one day, I will know exactly what I am supposed to do with them...