Sunday, September 06, 2015

A long time coming

This post has been a long time coming. It has been a long time in the making. This post is going to speak to the reality, not just of diabetes, but some of the manifestations of this disease, some comorbidities and some of the things we don't hear about often.
Often, and I have said this before, when we hear about a person with type one diabetes, we hear about the many famous people who have triumphed despite the disease, someone who "beat diabetes". The JDRF, the ADA, Forecast, Diabetes today, they all feature people with diabetes who eat right, take care of themselves, and "can do anything despite their diabetes". We look at pictures of healthy, vibrant adults who are a bit chubby and have type 2, but they just lost 20 pounds and are following the prescribed regime of diet, exercise, and healthy lifestyle.
  We see slim, fit, happy, vivacious type 1 diabetics wearing sports gear, with a G2 in tow, ready to be chugged for hydration after, or mid workout. We see Olympians, we see actors, models, and musicians who are all living healthy with this disease that they have been able to push into the background of their lives by paying it constant attention.
Wait. Now, how does that work? Its in the background, or its running the show... It can't be both.
  "I have diabetes, diabetes doesn't have me" Bullshit. Diabetes has you. by the balls, my friend, or the ovaries, whichever.
  Let us be honest for a moment about this disease. Lets stop telling the world what they want to hear, shall we? Nobody with type 1 diabetes escapes it. This is one true thing.
I get it, all the new diagnoses... we want to give them hope. They deserve it, just like we had. I mean, the moment you realize your child is not going to die TODAY, you get the euphoric feeling of them being invincible for a while. You just do, it isn't avoidable. And its kind of cool, knowing your kid is tougher than other kids have to be. But that lasts only awhile, until reality comes to your door. Reality can come in many forms.
Hypoglycemic emergencies
Nerve damage
Vision loss
You know, the stuff that's just not going to happen to you or your child if you are diligent and take very good care of your diabetes.
So when you actually do have some type of manifestation of this disease, or a comorbidity, you don't necessarily talk about it much. There is some pressure to appear as if you have actually "beat" the diabetes. It is right there, in the midst of the diabetic community, online, and in person. Its kind of an unspoken and odd phenomenon. Whose child has the "worse" diabetes... Whose child was diagnosed the earliest, who has the most children with the disease, and so on.
There is a lot of pressure to be the healthiest, as there are medical people who also have the disease who will tell you, "there is no reason your child cannot experience a perfectly normal life with diabetes". But that it a lie. At the very least, it is a gross misuse of the word "normal".

So, today I am going to talk frankly, honestly, and with as much foul language as I think I can get away with, about a few of the real manifestations of this disease, or things that may or may not go along with this disease.
The first and possibly the most important is the depression. Face it. Diabetes is fucking depressing. It sucks for so many reasons, but it can cause and exacerbate depression. Feelings of being a lesser person are real. Less desirable. There just are people out there who do not want to be friends with, date, marry or have children with a person with diabetes. Call it stupid, call in ignorance, call it whatever you want. Its true. It just is. People don't understand your diabetes either.
 Complete strangers want to give you advice on your illness. Nurses scold at you. Doctors preach at you. People with almost no understanding of your disease and how it actually is managed wear white coats and will tell you how wrong you are doing it in front of God and everybody. Sure, go ahead and try telling them that your Endocrinologist said this or that. They give you a look like, "I'm pretty sure you misunderstood your Endocrinologist" and they take a big red stamper to your patient chart that reads "NON-COMPLIANT" and its there forever.
 That's depressing.
Your mom is going to battle for you with the schools, and every organization you are involved in and as a pre-teen and a teen... that's pretty isolating. It is enough to cause enough social isolation at that age, so maybe your mom backs off, talks quietly to the school... but you have a low blood sugar at school one time and the nurse has to come. Now you are a seizure kid. And no matter how much shit that is that there is any stigma to being less than healthy, it happens. It's a school. If the teacher tells the kids that you are "just like everyone else" that means that you are IN NO WAY like ANYONE ELSE.
The social stigma of diabetes is huge. Along with depression comes other mental illness. And, with diabetes, you may miss the diagnosis of these, because so many things are chalked up to "well his blood sugars must have been out of whack"
Another problem that happens more often that we hear about is Type 1 diabetes and addiction. A person with Type 1 diabetes grows up with restrictions, and the constant pressure to control a disease that they may not be able to really even FEEL a lot of the time. They don't know any different. They aren't afraid of needles, and they, being closer and more aware of their own mortality than the rest of their age group, may exhibit risk taking behavior.
  Addiction for a person with diabetes is harder to treat. The non diabetic addict knows that ultimately, once they have kicked drugs or alcohol they will feel good. They can possibly envision a day when they wake up, free of chemicals, and feel amazing, and healthy. A person with diabetes does not have this motivation. They will always battle their bodies. Every day.
  My son, Nolan, got into drugs when he was 13. He started smoking pot from time to time. I told him that it was not probably a good idea, and I did start taking him to outpatient treatment. I tried to put him inpatient, my logic was that if he went to outpatient treatment, he would just meet other kids who wanted to do drugs. I was right. Shocking.
What surprised me and I could hardly believe myself, was the long battle ahead at getting help for my son.
I involved him with counseling, which helped. He stayed clean awhile. He did not experiment with any other drugs. He smoked cigarettes, and when I caught him, I punished him. But he kept it up.
We battled the diabetes first every day. I would find him in the morning with food wrappers around his bed and his pump beeping that it was out of insulin. I had asked him the night before, and he had told me it was full. I couldn't follow him around the house all night and he would wait until I fell asleep and he would go snack in the kitchen. He lost his kit several times daily.
  We made trips across town so many times because he would forget it. He left it in my car half of all mornings that I dropped him at middle school. I would ask him, "where's your kit?" "IN MY POCKET!" He was so irritated by being asked. I would get to work, across town, and get called by the school and he didn't have his kit. Id check my car. It was on the floor. He dropped it on the way out of the car. But was he really dropping it? Was he leaving it there, to avoid class, or something? They always sent him back to class... and I hollered at him for it, so what was the point if he was doing it on purpose? He didn't gain anything, and he got into trouble.. so...
Then the school started it. "We think he is using his diabetes to manipulate" Ugh I didn't know what to tell them. I didn't think he was, but I didn't think he wasn't. Tell him to stop. Good idea. Stop Nolan, stop manipulating your diabetes. I mean, do manipulate it so that you don't die, but don't manipulate it so that you don't have to go to class... you have to go to class anyway, so why would you do that? You are not doing that are you? Are you?
   By this time in his life, his high blood sugars were hurting. They made him throw up, they gave him terrible headaches. I still don't think he was manipulating his diabetes. I think he was a kid, with some serious problems beyond the diabetes, and he had one mother who was too tired running across town and back, and explaining his diabetes to teachers, and to school people, to after school people, to my mom, to his dad... to our other children... to my friends, to everyone... to anyone.
  I was worn out. Tired as a person can be, and tired of fighting the good fight, for my son to be treated fairly. When he started acting out it was the next natural thing... it was like, of course. I saw this coming.
So when He started and stopped doing drugs and started and stopped and started again... the programs weren't working. The random UA's at school weren't working. The treatment, the mentors, everything we tried became exhausted. And Nolan started drinking and moved on to harder drugs. It was last January that it got to be too much to handle.
 He had been on probation and was doing well, but probation ended, as did the UA's and the danger of going away. I started looking for places that would take Nolan. At age 17, we had exhausted every option we could and going to a placement to get the help he needed was his only option.
I made a call to a place in south Dakota. They did not take his insurance. I called his insurance company. I asked which facilities were covered. They told me that I had to go to their website (that did not give any listing of facilities that would take him because they neglected to tell me that they do not cover inpatient treatment) and that I had to call around. I called, I spoke to many people who were experienced in their field.
  Each facility I looked into in the state of Iowa, and I promise you, without exception that I tried every single inpatient adolescent facility outside of my town and not one was willing to take a child with Type 1 diabetes. "But you are a medical facility" I said to them, "yes, we are but we are not equipped" "I will send the equiptment with him, you wont have to have anything" "no" they said "no, I am sorry" "we don't have the nursing staff to do that" "That is too much of a liability"
Oh of course I asked to talk to their medical directors. They all "took it to the board" and they all said no.
  Of course I used phrases that were meant to tug at the heart strings, I broke down on the phone with all of them, I begged them to reconsider. I had the doctor write letters of medical necessity, letters stating that his diabetes was stable and that he needed help desperately for depression and addiction. They didn't care.
When I called, I said things like, "but he will die if he doesn't get help... How can you turn your back on someone who has a disease when you are in the business of helping children?"
"I am very sorry. Its not up to me"
They all said that.
   Every last one of them.
I thought of quitting my job and staying home with him all day. Watching him to make sure he was not doing drugs.
Financially, that wasn't an option.
When I started to talk about it  people, geniuses mostly, started telling me, "You cant MAKE someone want to get clean"
Thanks asshole I was hoping I could MAKE him want something since I have been such a success in the past at controlling the desires of others.
Nolan wanted to get clean. He was tired, and scared. He was sick all the time. He was taking small overdoses of his ADHD medication, and small overdoses of anything else he could get his hands, on. He sent me a very long text message one day, in February, that asked me "When are you going to be able to get me into treatment, mom, I am tired of this. I am addicted and I cant stop"
 I fought harder. I spent my lunch breaks calling places. I was getting calls at work all day. I called as soon as I was off work, but mostly the offices were closed. I left messages, I left my number. 
I was working with the doctors, the nurses, the facilities, the social workers, whoever would listen, but I was doing this stuff myself. I was taking all of his medicines to work with me, and I was sleeping with them under my pillow. I was depressed, I was tired, and I was ready to come unglued every day.
I woke up several times a night and followed him outside as he was standing out there, waiting for friends.  Every night.  People bringing him something to get high on or getting something from him.
One day, he was near comatose on drugs and alcohol and said he wanted to die. I took him to the ER. The doctor wanted to send him home. He was very skeptical about Nolan being in crisis, although Nolan was messed up on something and hallucinating. I explained to the doctor... I basically begged, him, after correcting him a few dozen times as he preached to my son about his diabetes and drug use. It wasn't until my son told him under no uncertain terms that he would not stop using drugs that he decided to get the social worker in on this.
  He went to Cherokee. They agreed to take him.
So, the paramedics came to take him via ambulance to Cherokee. I went home to get his things and I passed the ambulance on my way as they were on their way back. Nolan was angry with me. Very angry. They did his intake, asked many questions, and dealt with the fact that he had an insulin pump. I went home. I cried the whole way. I slept that night better that I had in ages.
Cherokee promptly got one of the placements who had previously told me no to take Nolan for treatment.
We drove to fort dodge to take him to treatment. They explained to me that they had a diabetic five years ago who "used her diabetes to manipulate" and that was the only other diabetic they had ever had and they had decided not to take any after that. But, since the social worker had a court order, they would take him, they guessed.
I talked to the counselors every day. Everything was going quite well, from their reports, no problems with the diabetes, no issues with anything, all was well, He was crabby one day, flung a chair at the floor, nothing they couldn't deal with they reported, this stuff happens they said, all was well.
Then on a Saturday night at 10:00 in the evening a bit over two weeks in the program, as I was sleeping, my phone rang. Nolan had to leave. They told me that he stated that he would like to run away, and that made him too much of a liability for them, with his diabetes. I woke up, "what, he tried to run?" I asked. "no" the staff told me, "Some other kids had actually run, and Nolan said that he wished he could run too, and I asked him if he was going to run, and he said no. Then he opened the door to let one of the kids in who had run, and I told him to go to his room and he did" "are you serious?" I asked, "he is kicked out for not running?" "He is just too much of a liability for us mam. You can pick him up tomorrow"
On Easter I drove out to the STARS program, demanded copies of every medical record and everything ever charted on my son. I took my son home.
  He stayed sober for a few days. I found a pill crusher and some of his amphetamine salts on the stairway. I reported this to his counselor, and I had already been trying to place him again. I went to a friends birthday party on a Friday night for a couple of hours and found him to be very drunk when I came home. He had also, I learned later, dropped acid.
 He told me that his friend Victor was very messed up and he was taking care of him, and invited him over. I found Victor on our basement floor in a pool of his own vomit. I woke the kid up. I tried talking to Nolan about the drugs, and how he can't do that. He told me several times that he intended to die doing this and that he would kill himself if I tried to intervene. I fed this very hungover kid and bought him a banana and some gatorate and I drove Nolan straight back to the ER. Back to Cherokee again.
Again I drove up and again I passed the ambulance on the way home. He was placed again. And removed. And placed again. In Sioux city, in a unit with kids he knew and used with from the outside. he completed something like 100 days there.
They had started him on a lot of medications there. They had restarted his vyvanse, they threatened to take him off his insulin pump, they decided he was using it to manipulate his diabetes. I asked them how. They told me, "well, there are times that his blood sugar is higher than we think it should be" and I asked if they were watching him take his insulin. They said they weren't sure how to tell. (turns out they had miscalculated carbs once or twice, and mostly his sugars were good...) I promptly directed them to an app they could download to make their phone a virtual pump, and then they could see if he was making stuff up.
The NP said that his sugars shouldn't be so up and down, that they should be in the low hundreds all the time, and that over 200 was not acceptable. *sigh* Okay I heard her out.
 I decided she was not real smart, but whatever. They took him off the stimulants in Cherokee, as he is an addict and had a history of abusing them. It made sense to me.
 I didn't know why they wanted to put him back on them, but either way... you know, I am not the doc. They said vyvanse has low potential for abuse and he said he needs it. I do know that with any addict, Kleenex has an insanely high potential for abuse, but I figured, look where me making choices has gotten this kid... someone else has to make the decisions.
We visited every Sunday for months. I did not miss one. His grandparents on dads side and I and his brother and sister visited and played cards. We went to family educations, visits, and counseling sessions.
Nolan had so much support.
He was dismissed quietly and he came home with aftercare plans ready to go. I wasn't sure he was ready but he said he was, and they did too.
They sent him home with me, his belongings, and his medications, which they did not count out with me. I didn't know any were missing.
  He was home just 9 days when he overdosed. I knew what was up. He was missing meds out of his bubble packs. I confronted him on it. I told him no way would he be taking any more stimulants. I took his bubble packs to work with me. I slept with them under my pillow again. I had my mom babysitting him because Monday he "went for a walk" and wasn't home when I woke up.
 He slept forever Sunday because he had taken some of his medications. I checked his pump and it was dead. I charged it and it was out of insulin. His sugar was HI. If this had happened at a friends house he would have been in a coma, for maybe days, and died.  We talked about that.
Wednesday I came home and some of his old using buddies were over. I spoke to them, gave them something to eat, and told Nolan that they had to go.
They left. I was going to talk to siouxland mental health in the morning. figure something out. This was not going as planned. Nolan needed more than I could give him at home, even with the counseling, the follow ups, etc...
It was about 10:00 when I went to check on Nolan. I was almost asleep but I wanted to go get his phone so he wasn't up all night talking to people and planning to sneak out. Something told me to go check on him.
He was asleep. His respirations were pretty slow... I counted 6. There was a bottle of Benadryl I had not seen in my house before. It was new. He was always asking for Benadryl to sleep when he was in treatment. I thought about how he had been at my moms that day and how she has pain pills for her back.  Probably stopped locking them up when he went to treatment. I tried to wake him and he would not stir. I asked his brother to come help me lift him into a sitting position. Nolan mumbled something unintelligible and flopped back on the bed. He did not recoil when grabbed or touched, instead he was flaccid and hardly breathing. I took the Benadryl bottle to my room. I counted. He had taken 25 of them. On top of whatever else he may have popped out of his bubble packs from treatment. Up to 13 trazodone, up to 13 clonidine, up to 13 tenex... I went back to his room. Yelled, screamed into his face. Asked him what he took.
  At this point he did not respond to even a hard sternal rub. I called 911  I felt no panic.  I felt numb.  I thought how I had laundry in the hall.  I thought to shut the bedroom door so Lily would not wake up to the paramedics working on her brother.  The paramedics could not wake him.
Off to the ER.
They found opitates in his blood. He had taken lortab on top of the trazodone and Benadryl among whatever else he got from his "friends". His pressures were running 70/30 for the next 12 hours.    They filled him up with fluid and they couldn't wake him to pee so they straight cathed him. He moaned quietly but did not resistor even wake up.   When there was a room available, he was transferred to the ICU.
He would have been dead. I found him that way about 45 minutes after he went to sleep which would have been about an hour after he started taking medications.
He is now in Cherokee again. The only place that would take him.
The facility that had him for 100 days has a "crisis unit" just for such situations. But they would not take him.
  Because he has diabetes.
  "but he had diabetes when he lived there for 3 months" "yes they feel he could hurt himself with his insulin pump if he is suicidal"
"take him off the pump. put him on shots"
That's a joke right? Alright. well. that's that.  Fuck you guys too.  The hospital social worker was irate.  outraged.  She wanted to fight the good fight.  I shook my head. I told her, with tears in my eyes, "How are you going to send your kid somewhere that you know they don't want him?"
You just cant.  I felt so sad for him. 

  He will be 18 in a week.
  I am hoping that this will make things different. Maybe adult units aren't on board with the "fuck diabetics" movement that the Iowa adolescent mental health system has going... Nolan suffers major depression.
 He may be bi polar. These things are manageable. Just like Diabetes. I am not mourning that he won't have a normal life. He wasn't about to anyway. That was taken from him when he was 7 years old. Maybe it was taken from me...
All I know is that this mental illness thing goes hand in hand with diabetes a lot of the time. They perpetuate and antagonize each other. His battle is uphill and on fire.
  Don't think for a second that I have not blamed myself. I could have done better, tried harder, calmed down, not made such a big deal out of things, made a bigger deal out of things. I should have been there more, been there less, never let him fail as much as I did, or saved his ass more than I did. There is no answer. There is no use.
  Some people tell me, "tough love. kick him out. stop taking care of him" That works, and is risky for regular kids but my kid will not fill his pump... and he will die. I cant do that. I am not ready.
  So now I deal with the fact that my son does not care if he lives or dies. He says he did not intentionally overdose but I know he wouldn't admit it if he had. I do know that he is very smart and knows a lot about pharmaceuticals.
He has major depression. He is sad and uses to feel something. Better, different or at all.
And I don't know what to do.

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


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.