tag:blogger.com,1999:blog-383930632024-03-13T09:44:05.347-07:00Type 1 DiabetesThe bright and the dark side of parenting a child with Type 1 Diabetes. Written by a mother, a nurse, and a woman with a decent sense of humor.Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.comBlogger40125tag:blogger.com,1999:blog-38393063.post-10641595147128547592021-10-25T06:31:00.000-07:002021-10-25T06:31:02.453-07:00The end<p> I haven't posted here for a long time. It might be because the fight got so real, so raw. </p><p>My son, Nolan, my beautiful child, died on October 3rd.</p><p>We don't know the cause of death yet. His brother found him and he was already gone. Nolan struggled with Mental illness, addiction, and Type 1 Diabetes. We understand that it was likely the T1D that took his life.</p><p>He had been in the icu several times that year. He had been sober and to treatment and relapsed. It was not the drugs that killed him. We know that. </p><p>I am still waiting for the report from the coroner. </p><p>I miss my son. Patrick and Lemon miss their brother. I wanted him to live and I can't stop thinking how cruel it is to have a child for 24 years and beg the medical world for help only to watch them struggle and fail and die. It seems headless and wrong. </p><p>So this will be my last entry. This chapter in my life has abruptly ended and took so much of me with it.</p><p>Please pray for my grieving process to be fluid and healthy.</p><p>Nolan would want it that way.</p><p>Thank you to those that had hope for him. </p><div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com0tag:blogger.com,1999:blog-38393063.post-64770559629939852722015-09-06T21:32:00.000-07:002015-09-06T21:33:11.199-07:00A long time coming<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Wait.
Now, how does that work? Its in the background, or its running the show... It can't be both. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
"I have diabetes, diabetes doesn't have me" Bullshit. Diabetes has you. by the balls, my friend, or the ovaries, whichever.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> 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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">DKA
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Discrimination
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Seizures
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Hypoglycemic emergencies
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Nerve damage
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Vision loss
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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".
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> 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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> That's depressing. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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"</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">What surprised me and I could hardly believe myself, was the long battle ahead at getting help for my son. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> 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... </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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? </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> 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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> 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"
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Oh of course I asked to talk to their medical directors. They all "took it to the board" and they all said no.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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?"</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">"I am very sorry. Its not up to me"
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">They all said that.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> Every last one of them. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">I thought of quitting my job and staying home with him all day. Watching him to make sure he was not doing drugs. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Financially, that wasn't an option. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">When I started to talk about it people, geniuses mostly, started telling me, "You cant MAKE someone want to get clean" </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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" </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> 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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
He went to Cherokee. They agreed to take him. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Cherokee promptly got one of the placements who had previously told me no to take Nolan for treatment. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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"
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> 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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> 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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> 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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Nolan had so much support.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> 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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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... </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> 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.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">Off to the ER.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">He is now in Cherokee again. The only place that would take him. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">The facility that had him for 100 days has a "crisis unit"
just for such situations. But they would not take him. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
Because he has diabetes. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
"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"</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">"take him off the pump. put him on shots"</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">"no"
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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?"</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">You just cant. I felt so sad for him. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
He will be 18 in a week.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"> 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...
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
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.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">
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. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">He has major depression. He is sad and uses to feel something. Better, different or at all.
</span><br />
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;">And I don't know what to do.</span>
<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com0tag:blogger.com,1999:blog-38393063.post-76023289689722901502013-11-20T18:58:00.001-08:002013-11-20T18:58:20.484-08:00question of the daySome 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.
<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com0tag:blogger.com,1999:blog-38393063.post-63777309560297011462013-01-06T22:09:00.001-08:002013-01-06T22:09:26.384-08:00My D kid<p>Nolans last visit to the E.R. for fluids. </p>
<div class='separator' style='clear: both; text-align: center;'> <a href='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWC5kpARPcAXDOMHjtd76AYMUgE6XTXKX8k2dUqBzrI2Y-UGixBnNE7ymU1Ma1GHtS_0j5AgR8sC7h8uBqyAjtWmrMIHjhMnDcm_WY-fMCxHzwXSHzAwZ9xKRczCGbfDw1faTOiQ/s1600/2012-10-01_09-37-07_964.jpg' imageanchor='1' style='margin-left: 1em; margin-right: 1em;'> <img border='0' src='https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWC5kpARPcAXDOMHjtd76AYMUgE6XTXKX8k2dUqBzrI2Y-UGixBnNE7ymU1Ma1GHtS_0j5AgR8sC7h8uBqyAjtWmrMIHjhMnDcm_WY-fMCxHzwXSHzAwZ9xKRczCGbfDw1faTOiQ/s640/2012-10-01_09-37-07_964.jpg' /> </a> </div><div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com18tag:blogger.com,1999:blog-38393063.post-58779652854187995612013-01-06T11:20:00.000-08:002013-01-06T22:11:52.213-08:001 vs, 2Nolans 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. <div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com7tag:blogger.com,1999:blog-38393063.post-41885203681943244812012-10-01T21:47:00.003-07:002012-10-01T21:47:50.753-07:00Letter 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. <div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com6tag:blogger.com,1999:blog-38393063.post-68141672363640480122012-09-26T22:15:00.000-07:002012-09-26T22:15:27.803-07:00I 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.
<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com0tag:blogger.com,1999:blog-38393063.post-53596220380523193642011-08-28T15:12:00.000-07:002013-10-13T22:06:52.161-07:00Diahbeetus<p dir=ltr>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. <br>
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. <br>
Locking myself in the bathroom at the roller derby in Iowa City and having a good cry... Watching my kid not care.... <br>
But now... He has figured out that he has to take care of his sugars if he wants some independence. <br>
I never punished over diabetes related stuff. But, there are things that he cannot do if he is not taking care of it. <br>
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. <br>
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. <br>
He has been out all day... riding bikes with his friends. <br>
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. <br>
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. <br>
He is impressing me. He shows up on time and even early. <br>
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. <br>
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. <br>
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. <br>
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? <br>
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. <br>
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. <br>
</p>
<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com0tag:blogger.com,1999:blog-38393063.post-77276010855251618602011-06-17T21:15:00.001-07:002011-06-17T21:30:09.891-07:00I 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. <br />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. <br />I have hundreds of vials. Fat little Novolog vials, and Long Lantus vials, maroon decoreated Humalog vials... Hundreds. <br />They take up space... <br />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. <br />I sometimes gaze at them and think about how these little glass bottles have affected our lives. <br />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. <br />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. <br />My sons life, accessed through a rubber stopper... day after day after day.. month after month, a needle, plunged through rubber...<br />and it leaves no trace at all.... <br />Not one tiny dot, the route to his survival... and the eye cannot see it. <br />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. <br /><br />My husband knows not to throw them away. He tried once... <br />but I cant, somehow... <br />I just need them... <br />They are a comforting, somehow... <br />and they are in a drawer. <br /><br />and one day, I will know exactly what I am supposed to do with them...<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com21tag:blogger.com,1999:blog-38393063.post-19449911481098749972010-09-19T22:36:00.000-07:002010-09-19T23:17:46.397-07:00HomecomingIt's been a while since I have posted. I'd like to say "oh I was just super busy" but thats not the truth. <br />The truth is that I had nothing good to say for a while. My last post summed it up. We were all insanely sick of diabetes for a good long time. School called me two or three times a day with concerns, not only with Nolans blood sugars, but his behaviors as well. He was eluding the school nurse when he was meant to go in and tell her his sugars. He was taking detention regularly for doing stupid little things to get into trouble like chewing gum, or, writing on his desk, things like that. He was having a very rough year. I all but gave up. It was a constant battle. He was angry every day. He swore at me. My little angel swore at me, and not just the once. Not even once daily. He tried smoking. He wrote all over his arms and hands with black sharpie every day. It looked filthy and pissed off every adult on earth, including me. I'm not sure why, because I am one of those gals who goes around promoting freedom of expression...He wanted to guage his ears out, (which, much to his father's shagrin, I dont have a problem with). <br />The school counselor expressed concern that he wore mostly black clothes. I told her I was ok with that. "WHAT?" she spat her coffee onto her papers, "that's alright with you? You dont think he is alienating people that way?" <br />"only people that he feels a need to alienate, I guess, Half the kids at this school shop at HOT TOPIC for the love of everything holy, its a style... its not rebellious and dark if you can buy it at the mall!" I told her. Lost her at hello.<br /><br /> Basically he went through a metamorphosis, a very painful, unappealing incubation period and he is... I think... coming through it. <br />Now, he has not found the Lord Jesus, nor has he joined the chess club or the Golf team, and not just because they don't offer that at his school....<br />He may go out for track, but will probably never be a jock, and thats cool with me. He still plays his drums and is learning bass, and has impressed me to the point that I paid him cash money to babysit. At least half what I would pay a babysitter I was not related to. <br />He works a bit more with his diabetes. He still "forgets" to bolus. He still lies about his blood sugar levels, but not every time now. <br />He still swears, but not at me, now he just swears like he is talking to one of his friends, "oh I have a lot of homework and sh**." I correct him. He is 13 now. He is influenced by his friends now. <br />I am crossing my fingers for a better a1c and hoping for the best. <br />I was checking my phone last week. I often leave my ringer off so I can miss calls when I am driving... and school had called. CRAP. what now. <br />I called back. <br />"hi this is Jen Dean, well, Mary Dean, thats my first name, we have this conversation every time I just need to quit, Nolan is my son and I just got a call its probably from the nurse..."<br />"yes, Hold on let me try that extension"<br />"Julie Lastname, can I help you?"<br />"Hi Julie, its Jen, Nolans mom.... I saw that you called?" I could hear the defeated tone in my own voice. <br />"yes!" she started, "I just wanted to call and tell you that Nolan is really doing an excellent job coming into the office without being told this year, and his sugars are so much better and he is just all around much more pleasant and enjoyable to be around. We haven't had to chase him down once this year he is being VERY responsible"<br />Uh... huh? no, this is Nolan DEAN's mom.... uh... wait a minute... are you saying... what is this, am I on punked? <br />I had to choke back a little something that was caught in my throat and had some allergic sniffles right then. No I wasn't crying... <br />"Thank you" was all I could say for a second. <br />"I really appreciate hearing that, you have no idea how nice that is to hear....<br />and it was. <br />So, finally... he is loving himself a little more, and the rest of the world, or at least a few people that matter are taking note of what an awesome kid he really is. <br /><br />Wow. Keep it up Nolan. Don't ever be someone you're not, but DO love yourself... and do show the world how you can shine from the inside out... <br />I love you Nolan. <br />and no mom could dare be prouder.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com12tag:blogger.com,1999:blog-38393063.post-76596434166637941672009-11-23T09:01:00.000-08:002009-11-23T09:12:36.518-08:00TodayNolan has now officially retired from having diabetes. He is done, he has said, "I'm out!" and no longer wants to have anything to do with it. <br /><br />And I dont blame him. <br /><br />For almost five years, he was an ideal "diabetic" and endured all of the lameness of being sick and feeling crappy and shots and sites, and pokes, and lows and highs, and restrictions at times, and everything else a kid can go through. <br /><br />Even when he was being diligent about his diabetes, with my help, he did still hear a lot about how he was maybe "faking" his low blood sugars, and "faking" feeling sick, or "playing games with his food" so that he could be high, or low, and go to the nurses office at school. <br />Because all of us know, there is no more rockin' place on earth than the nurses office. <br /><br />If everyone accuses you of it... I guess, why not? <br />So it gave him a good idea. One night, when he was asleep, he somehow disconnected his pump, and consequently woke up at over 600 with ketones. Of course, he also had not eaten since dinner, so that did not help the case. I cant take him to school like that, and he had to stay home.<br /><br />So, after that happened, he disconnected again, and again, and again. I dont know if he is doing it in his sleep, or if he is just doing it, but finally I started putting a tegaderm OVER the site at night before he goes to bed, which he despises, but it works. <br /><br />He lies to me about what his blood sugars are, and wont show me his meter... I have to make him show me every time now, and he hates that. <br /><br />I know that it stinks, and he really does understand why I need to do so much of that.... I would like to turn it over to him soon, but right now, he wont do anything. <br />He does not want to. <br /><br />And why would you? when your parents ask what your bg is and you tell them 340, and then you get a myriad of questions as to why, and you dont really care, you just want to make the biggest lego airplane you can... <br />Did you eat something, <br />are you feeling ok?<br />Did you wash your hands first? <br />"I dont know, ma... I just want to be a kid"<br /><br />And so, for now, I continue to sneak up on him and look at his pump, or I try to ask him when he is in a good mood, but often it is a fight. But, he is alive to fight with me. <br />And that is what is important.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com15tag:blogger.com,1999:blog-38393063.post-22152604833606452482009-02-16T08:38:00.000-08:002009-02-16T08:55:56.280-08:00SPANGSTMan alive! I love my son, but 5th grade has sone a number on his attitude. He is not only the whiniest kid on earth, he has also mastered the art of showing his exasperation with his incredibly stupid parents. <br /><br />I remember that. I remember when I got so hip to the jive that my parents suddenly became the STEWPIDEST people roaming the earth. It was a miracle they were toilet trained, seeing that they spent thier entire lives in OBLIVION... and lucky for them, they had me to teach them. How did they fumble thier parts together TWICE in order to make my brother and I? Was it some moment of drunken clarity that they accidentally created life, I mean... these guys were dumb. I couldn't figure out how they managed anything, let alone both of them getting thier Masters Degrees. <br />(not to mention doing it BEFORE they got married ,and getting married BEFORE they had kids... now see, I did it exactly the opposite way around, first kids, then marriage, then a degree, no masters... not yet.. pine for that. smart me. <br /><br />The new thing at my house is that whatever I go to tell my 11 year old, he already knows. He is showing a very astute psychic tendency, I will tell you that... <br /><br />"Nolan, time to get up for school!" <br />"I KNOWWWWWWWWWWWWWWWWWWUH!" <br />Oh OK I didnt know. <br /><br />"Nolan, I am going to pick you up a"- Interrupts- "I KNOWWWWWWWWWUHHHHH!" <br />"a new minibike after school" (i finish with a lie to get his attention)<br />"oh but you knew that already didnt you?"<br />"OH MY GOOODDDDDUUUHHHHHHH!" <br />He knows about my game. <br /><br />"Nolan, could you put"--YES I KNOWWWWWWWWWWUHHHH!" <br />"your-" -"I KOWWWWW"<br />"socks-" -"YES I KNOOOOOOOOWWWWWWUUUHHHHHH!"<br />"in your-" -"I KNOWWWWWWWWWWWWWWW.. Im putting them in my dresser, GODDDDDDDDUHHHH!"<br />"MOUTH???? ALL OF THEM???? CAN YOU FIT THEM ALL IN THERE SO I DON'T HAVE TO HEAR YOUR CRAP?"<br /><br />OK I dont say the last part, but I want to. <br />Dont even let me get started on when I ask for blood sugars.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com7tag:blogger.com,1999:blog-38393063.post-25517012359953656382009-02-03T09:51:00.000-08:002009-02-03T10:53:06.969-08:00Nolan is eleven. He is at the age that he wants to be with his friends more than with his family. He likes girls. Girls like him. They text him all night long. Zoe, Kaylee, Irelinn... constant phone flirting. <br />I will tell you that some of these girls are quite grown up in thier phone text conversations... When it gets out of hand, I take the phone away for awhile, and we talk. <br />I had taken it last week, with the unstated intent of keeping it for a couple of weeks to really teach him a lesson, but ended up giving it back to him on Friday. <br />On Friday, I went to his friends house, where Nolan was about to eat dinner, and go to a Hockey game... And I gave him his Glucagon, slipped it into his inside pocket, and his phone along with it, told him really quietly that I loved him, and said goodnight. <br /><br />The next day, he spent a good amount of the day on the phone with a girl he'd met at the hockey game. We took a short road trip, and had a pretty laid back day. <br /><br />I was feeding the baby in the kitchen when Nolan came downstairs. He sat across from her high chair in a high stool, with that silly look on his face, and a bit of a pallor. <br />"You Low?" I asked him... but he was busy texting. I imagined texting him..." u lo?" and chuckled to myself. <br />"Put the phone down and check your sugar." I told him. <br />His pump said 50 but the sensor was old, and who knows... it may be lower or higher and he would still look like that. <br />He did, but the lancet device broke, at that very moment, the poking mechanism did not work. I would have done a manual poke, but I knew he would not let me, so I started looking for another poker. <br />I pulled open the kit drawer, where we have nothing but blood glucose kits. <br />Kit after Kit after Kit I opened, and tossed over my shoulder-- NO POKER! some had nothing in them, some had only a meter that we never used, some had a meter strips and no poker... I handed him some candy. <br />I went to the other room to get Nolans backpack. He is supposed to always have everything in there... I felt around... nothing.........<br />No kit, and also.... it seemed like I felt the absence of something else... AH yes! The glucagon! I had put it into his coat pocket. So I checked the coat. No glucagon. Now, wait, I am still looking for a poker, I gave Nolan some more candy. I then continued my search. <br />"wheres your glucagon?" I asked him. <br />*shrug* he did not know. "maybe at the Tyson event center?" He said.<br />Now I was getting panicky. I left the room again to look one last place for a poker, and found one. My secret secret super secret stash of one kit plus poker. <br />I pulled it out of its hiding place, (a place so secret that it will not be named here.)Then I heard it. THUD!!!!<br />I took two steps back into the kitchen to see Nolan face down on the floor, pasty-white and in a stupor. He had fallen off of his stool. <br />I called for James, and starter crusing candy into a fine powder and gave it to Nolan, who was able to stand back up. <br />We poked and he was 42. It must have been lower than that before we treated with candy under the tongue. <br />The baby laughed and giggled at our silliness, and in his stupor, Nolan smiled at the baby and sang to her from his chair. <br />I read him the riot act about losing his glucagon. <br />I read him the riot act about not having a poker.<br />I mourned a little, that he is growing up and away from me a little. I mourned that he has to have diabetes as well as just being a pre-teen. <br />I mourned that he is not a tiny baby anymore, that I can fix all the worlds problems for. <br />I made him go to the pharmacy with me while I bought a new glucogen kit. <br />Today getting ready for school he checked his sugar, and I was just about to give him the standard lecture on keeping the kit in one place all the time, and just as I opened my mouth The stereo turned on. <br />My husband put in some Ska to get us all happy in the morning. <br />It is almost a religion for us. You cant be mad when there is ska music on. <br />So, we started dancing. I tried to teach Nolan to skank properly, but he wont get his elbows out quite right. But It was fun anyway. He does a really good job otherwise, and instead of fighting about diabetes today, we skanked in the living room while Patrick brushed his teeth, and James got Lily dressed. <br />And for once, we started off on a good note.<br />Nolan went to school laughing at my dancing. <br />And that, though I cannot fix all the worlds problems for him now, is maybe just what he needs.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com8tag:blogger.com,1999:blog-38393063.post-88105728562062129142008-12-26T09:40:00.000-08:002008-12-26T10:25:11.409-08:00I almost said this was a terrible Christmas. I was going to hilight the high blood sugars and the lows, and point out how diabetes does not take a Christmas Hiatus. <br />But I got about halfway through this story and it hit me how the little things can make or break an entire holiday. <br />This year things were just too rushed. I wanted to spend time sitting on the sofa with James, sipping coffee, while we watched the kids open surprises that would make their young eyes light up with joy. I wanted to enjoy how sweetly the kids got along on Christmas day, just as I remember my brother and I doing as kids... Playing together, getting along, laughing... while my parents sat in thier pajamas for an extra long time and we layed on our backs with our heads under the Christmas tree, basking in the glory of the day being all about us getting what we wanted while we gazed up at the lights and talked to each other out of happiness. <br />But this year... It was just too busy. <br />James had foot surgery on the 23rd, (had to get it in by the end of the year, for insurance purposes) And that caused loads of paperwork to have to be done for the days preceeding, and of course, one of the nurses at my work quit, her last day being the 19th, so I had to be on call more often, and all the shopping was last minute, and I was wrapping presents on Christmas day still, all the while stopping to feed a hungry baby, stop kids from arguing, and make a futile attempt to pick up some of the slack with James being a foot shy of a helpful husband. (he is usually more than helpful... In fact, I need him... just dont tell him I said that out loud)<br />I found myself wishing I could stop the clock and just enjoy....<br />And to make things glorious, Nolan lost his kit twice at Grandma and Grandpa Deans house house.<br />I had just finished feeding the fussy baby and told him to check when he admitted to me that he could not find it, and walked into the kitchen to ask if anyone had seen it. <br />What did not surprise me was the immediate response of all the adults around, "OH he lost his blood sugar kit? I have not seen it.... and then they all ask around, and do some looking, not find it, and go back to what they were doing, assuming I had located the little bugger. <br />But I was still looking. Once in awhile, someone would ask if we found it... show some concern, and then go back to what they were doing. <br />And they probably don't see the importance of it. I used to become really upset when people did not understand... But now I dont feel bad about it. I am no longer on a quest to make the whole world see how crucially he needs his supplies. I have given up on that with no hard feelings. Sure, it would be nice, but that's not realistic, and they are just being who I was before I had a kid with Diabetes. <br /><br /> Nobody is being uncaring, but most of the time, they just dont know how to help, and perhaps the best way to help, is just to stay out of the crazed lunatics way as she tosses stuff around like a wild woman as she looks for a 3X4 inch black sqare case containing a key to her childs life support. <br /><br /><br />Normally I would be able to enlist James' help... But since he is not walking well currently, I couldn't. I had to get someone to hold the baby, get my coat, and go outside to join Nolan in his quest to find the kit, after the house had been unsuccessfully combed. <br /> <br />As I was opening the front door, and saw a black coat sitting on the bench right next to it, and squinted my eyes a little, and there it was... the outline of the kit. <br /><br />Leave it to my kid to find the ONLY black thing in the room below eye level and put his kit right there, right on it. COMPLETELY camouflaged. <br /><br />I grabbed it and opened the front door to see Nolan, walking briskly with his head down, looking through the snow, trying to recall his steps... <br />And I had to smile, when I saw him, because out there with him, in the cold snow was his Uncle Joe, patiently walking beside him and helping him to look for his kit. <br /><br />I called out to him, and briefly thanked Joe for helping him.... <br /><br />But I mean to really tell him sometime... just how much that meant to me. <br /><br />I think the best Christmas gift imaginable is to know that someone else who doesnt necessarily have to, offers some support and love to your kid. <br /><br />That was the best thing I got for Christmas.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com2tag:blogger.com,1999:blog-38393063.post-87380387419635533992008-10-16T15:52:00.001-07:002008-10-16T16:08:38.515-07:00GoudaGood lord. <br />People say that little girls whine. As a young child, I was always told to quit whining... especially by my dad and my brother, to which I would reply in the most high pitched voice I could muster, "I'm NOT Whiiiiiiiinnnniiingggggggg-uh!" <br />Whats funny is that almost any whined word is followed immediately by the syllable, "UH". <br />Try it. "Give it heeeeerrrreeeee-uh!" try again, "It's not Miiiiiiinnnneee-uh!"<br />"Leave me alooooooooooooooooone-Uh!"<br /><br />I think its because we have to grunt to get the whine out. whines are so forced, so frustarated. A whined word is one that resents having to be uttered... never should have to have been spoken, which should have been known before it was incited... by the person eliciting the whine in the first place. Usually a parent of some sort. <br /><br />Rarely does a teacher hear the whine. <br /><br />The whine is annoying, and makes communication difficult. <br /><br />But I will maintain that girls are not the whiners. There is a creature out there that is FAR whinier than the little girl who doesnt get the doll she wants at the store. <br /><br />There is one creature who utters 99% of all whines that cause sound. <br /><br />I have said this long before I ever had one, the whiniest creature of all is the eleven year old boy. <br /><br />And now I have one. <br />Oh I saw it coming. Not because there was some sort of warning sign, but because I had the joy of working with all ages of kids at a shelter for homeless kids. <br />Now, if anyone has anything to whine about, its orphans. For sure. <br />But time and time again, I found myself bristling up the back due to one genre of orphan. the eleven year old boy orphan, and I have suspected that this affliction extends to eleven year old boys with families as well. <br />And it turns out my suspicions are correct. <br />Now they don't do it around their friends, but they will do it when any mixed group with adults and kids. And they will do it constantly. They are now the self elected announcers on what is and is not fair in the world. <br />And there going to tell you. <br />"No FAAAAAAAAAAIIIIIIR-uh!!!!! He got more than me" to which you should always reply, "what are you Monk??? Its upsetting the natural order of the universe because your brother got one skittle more than you did?"<br />and the eleven year old boy will inevitably say, "GOOOOOOODDDDDDD-UH!"<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com4tag:blogger.com,1999:blog-38393063.post-40662259873535260772008-10-15T15:56:00.000-07:002008-10-15T16:11:37.300-07:00My son's teacher emailed me a few weeks ago, asking if I could please set the date/time option for his meter for the correct time. <br />I hit the "reply" button and started typing away, as I often do before I even have time to think about what I just read... I typed, "which meter? the pink one touch, the green one touch, the one touch ultra smart, the one touch ultra that is round with a yellowish screen, or one of the accuchecks, and by the way have you seen the green one touch anywhere lately?"<br />But then I hit the delete key, and watched everything I just said go away. Sometimes I wish I could do that in real life... <br />We do have a lot of meters.... and for a kid like Nolan, who loses at least one kit a day, we need them, or we will be spending all day looking for that little black zipper bag... yelling at each other. I lose stuff too, as does my husband... Actually, I lock my keys in my car. James loses his wallet and checkbook, Nolan loses his kit and his homework and his backpack and anything else he needs. Things just dont stick to him, or his dad. They should be nudists. <br /><br />Anyway, I erased my words, because I thought first, "why does she need the time to be set... he doesnt use a meter that communicates with his pump..."<br /><br />I thought naively for a while on that... then I thought... OH. wait. <br />I get it. <br />She thinks he is "faking" when he is low. <br />She is checking up on him, despite what my care plan said. <br />Despite the fact that I told her that even if he has a normal number, he may still need to treat if he feels low. <br />That skanky bitch. <br />I told her... under NO uncertian terms, that he does NOT fake lows, and that even if you think he is faking, even if you KNOW he is, you let that kid treat, because you may be making a grave error. <br /><br />So I wrote back, <br />"no. I am not going to waste any time doing that. He has a continous glucose monitor on, and I download that info, the only other reason for doing that is so I can download and find patterns.... He has so many meters, some reset themselves here and there, the battery cover comes off, and suddenly it is november first, 2002 again, so... I dont mess with them these days. <br />Does it bother you when clocks are set wrong? Is this a "monk" type of a thing, or are you having him show you his blood sugars. He doesnt need anyone to check on this, but If I see fit, I will let you know when and if that ever becomes necessary. "<br /><br />Then I hit send.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com1tag:blogger.com,1999:blog-38393063.post-71322899659148544522008-09-27T13:52:00.000-07:002008-09-27T14:12:53.098-07:00HII get a lot of D mags and rags in the mail. I get a lot of meter ads, and supply ads, and part of that is my fault. I love the freebies. You can get freebies from almost any company, and that is the way it should be. <br />Accucheck sent us a free Aviva, with cool stickers so we could change the look of the meter, which is a novelty, at least, but is fun and cool. Years ago, I talked sidekick into sending us a free meter. They really didnt want to, and I figured our why as soon as we used it a few times. Novelty Item. Then Glucophone sent us their free phone. Another novelty item as well, because it limits the model of phone that you can use, and ours broke rather quickly, so... But a good concept... hopefully one that will be expanded on. <br />As fun as all of the freebies are, they are hard to toss out. I end up keeping a lot of magazines. <br />I decided today to go through them and toss what I did not need to keep. <br />I went through page after page of ads for foot lotion, sugar free Lorna Doones goodies, along with countless articles on Type-1 diabetic tri-athletes, and older Type 2's who are living life to the fullest by taking walks with thier spouse and the occasional famous old person adding thier face to the many faces of Diabetes, sometimes reinforcing the stereotype... OK almost all of the time...<br />And, of course, the myriad of ads for the Blood Glucose Meters. Less painful testing, Alternative site testing, Obviously meant to lure in the person who tests once daily or less, because when you need to test six or so times a day... what's pain?<br />And there are several brands of meters... some I have never even seen in real life... some I have a hundred of at home... like bar soap or a black comb... they are just an object in our house that are often unnoticed. The black vinyl zipper bag, with the zipper pull missing in many cases... They always show the meter on a white or bright surface. <br />But those ads would not even catch my attention if not for the one thing that makes them stand out, stark and noticable to me...<br />The number. <br />They all read 104, 107. 108, 102, and numbers like that. <br />I dont know if they are trying to imply that thier meter equals better control... <br />But much like the diaper commercial where they pour blue fluid onto the test diaper, the meters ads are only trying to make pretty what is most often not. <br />I think they ought to put realistic numbers in thier ads... <br />Like a sweaty and blurry from shaking hand holding a meter that says 36, or a Kate Moss from the 1990's holding a meter that says, 462, or better yet, "HI".<br />Cause thats what diabetes is really all about... <br />But then I'd also like to see a diaper full of mustard on commercials too.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com5tag:blogger.com,1999:blog-38393063.post-62074859042038918182008-07-17T16:00:00.000-07:002008-07-17T16:29:52.792-07:00Give 'em enough rope...Sometimes you know someone who has a big need to fulfill. It is hard to understand why... I mean, we all have needs, desires, everyone wants to feel important. But there is always someone who has some innate desire to step on you to fill thier soul. <br /><br />It always starts out in a mild mannered way. They ask your advice, and they listen intently... take notes... And you share, because, it is cool to help, it makes you feel good... Anytime someone gives you a good idea, you tell someone else what a good idea that person gave you. You credit them, because they were cool to tell you. <br />And then later you walk into a room and see that they are telling someone about "the great idea they came up with."<br /><br />And you cock your head to one side, and say, "but---- I-----" then to the other side, and then you just shrug and let it go... because, hey, it was a good idea, and just because it was originally yours, doesnt mean that you need recognition for it... Heck, if that person needs it so much, let them have it, right? They know deep down who's idea it was, so they cant really feel that good, can they? No not really. To each his own..... Que Sera Sera...... What it Is Bro,<br /><br />Then you notice they are doing it again. "Hm. Well, Ok. thats a little annoying, I mean, I can see once, but again... Is this person going to tell every good idea I ever had and say its hers?" You ask yourself. <br />"Probably," you answer, because, who else is going to answer when you talk to yourself? "Better not tell her anything else good..."<br />Because that is just uncomfortable. <br />And not that big of a deal, at the same time... so why does that person keep doing it? <br />"some people are just weird" you tell yourself, and since you grew up pretty adequately socialized, you can't assume everyone knows how to just be a decent gal.... so... You just let it go. Its a Huge Faux Pas, but those things happen. Maybe that person never had a chance to be like that in Jr. High, so you just have to let it happen. <br /><br />Then you notice that person sort of.... trying to put you down... Hm. <br />Well, OK thats fine... <br />And you just let it go on, because, who's the one really looking bad, here... <br />You have faith in people, that they can eventually see peoples motives, and once they see it, they will lose respect. <br /><br />You know <strong>you</strong> do when your co-worker constantly puts down someone that works alongside him.... and constantly puts himself up... You lose respect, and so you just silently let go...<br /><br />But you are still, ever wondering, just what this person thinks she is <em>doing</em>... <br />And just how far she will go. <br /><br />And you throw out more rope to her, because... Sometimes that is all you can do.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com4tag:blogger.com,1999:blog-38393063.post-14737925387855388282008-06-11T17:16:00.000-07:002008-06-14T09:39:41.778-07:00Camp.Diabetes camp. <br />Every year, we pack up our bags with a flashlight, a few pairs of shoes, ten pairs of brand new socks, (because for some reason I cant have people seeing my kids in dingy whites socks--- what must they think?) Ten pairs of underwear, in case he gets a hole in one... about four pairs of swim trunks, because I know damned well that Nolan will consider swimming to be a shower, and I know that he will wear the same swimsuit all week, but just in case he has a hankering to change his look... I send more than one. Hats, jeans, boots, raincoat, a sheet, and a blanket, a pillow, bug spray, (which I dont believe in using, but buy because the list says so) sunscreen (That my son will not put on)<br />and a box of quicksets, for the numberous site changes he will do at camp, and we shove it all into the car and take off for Camp Hertko Hollow. <br /><br />Camp Hertko Hollow is the most beautiful haven on earth. It is located at the Des Moines Y camp site, and is quite possibly my favorite place ever. I have been all over, just so you know...<br /><br />Of course is is heaven to me, because it is the one place on earth where my son gets NO looks of sympathy for having diabetes. He gets no, "awwww. that must be terrible" <br />Good god. How on earth must it feel, at ten years old to all the time be told that your life must be sheer misery? I consider it an insult, actually, to my person, my resiliance, will to live, and positivity. <br />To say that is just is just rude, the more i think on it. People are trying, of course, to be nice... <br />But what does that say about our quality of life? <br />No. Its not that bad, and I am not weak, and neither is my son, and we live a happy, normal life. He has lots of talent, he plays the drums, is very smart, and funny. Ask him about His drumming!!!! <br />At camp, he is just one of the hundreds. <br />HUNDREDS... Yes, its true. <br />His counselors are not afraid to yell at him for being a turd just because he is diabetic. <br />Other kids dont point to his pump and say, "whats that?"<br />Nobody looks at him funny for sitting down in the middle of a game of kickball to eat a snack... They all do it together. <br />And it is FUN for him. <br /><br />I love camp. <br /><br />I volunteer there as a camp nurse. <br /><br />I love to listen to the stream as I walk back to my cabin at 2am, after doing night checks. I love to watch spiders crawl up thier webs that glimmer in the moonlight. <br />I love to talk to my cabin counselor about what she wished her parents would have done differently with her diabetes... and I love to learn. <br />I love to laugh. <br />I love to live. <br />And that is why I love Camp Hertko Hollow. <br />The kids there, as well as the staff work SO hard to have a great time. I think it is the one time of year that they can do this. <br />They sing at meal time, they get up from the table, and they dance to songs like sugar pie honey bunch that is blasting on the Y camp radio. <br />They play tricks on each other. <br />They sing when they walk. <br />They laugh... Belly laughs, the heartiest kind. <br />They compete for the cleanest cabin, and who can win the golden plunger. <br />Then they try to sabotage others attempts at winning.<br />The Y camp is beautiful, free, joyous, fun. <br /><br />And now.... it is under water. <br /><br />The floods have taken the dining room, and the pool. <br />Y camp staff, volunteers and all sorts of people are working to get camp ready for June 19th, when camp will start. <br />I take a deep breath and hope that it can be done, that the damage is not too extensive, that the 41st year of Camp Hertko Hollow can happen. <br />Lots of work is to be done. I am sadly too pregnant to do much physically to help. But I will be sending drinks, and supplies this week. <br />I would encourage anyone who is interested to check this website out<br />www.camphertkohollow.com and check out the Y camp link. <br />And, if you find it in your dear hearts to do this, call the Y camp, and see how you can help. <br /><br />I say all the time that this we live in the best time yet to have diabetes. But all the technology, all the new treatments, and all the upcoming new "cures". I would not trade it for Camp Hertko Hollow... not in a million years. Camp has done more for Nolan, (and for my soul) than anything else has. Ever. <br /><br />Once more, www.camphertkohollow.com<br /><br />Thank you.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com3tag:blogger.com,1999:blog-38393063.post-80921010472418067412008-04-08T07:05:00.000-07:002008-04-08T07:26:05.559-07:00Today has started off on all the wrong feet. Well... actually, it started off alright. We got my husband off to work with a minute or two to spare. That was nice. No stress there. Then I came home and made Nolans lunch menu out. First I checked my email to see if the guy from the community schools had emailed me carbs on the new items coming up this week. He had not, So I had to wing it anyway. <br />But Nolan, in his 4th grade, one track mind... was just not going to get anything done today. <br />First it was blood sugar. "what was your sugar, did you check it, will you check it, will you check it now, will you please put down the balloon and check your blood sugar. Nolan, check your sugar, check it now." After five minutes, I ask once again, "What is your blood sugar?" as I enter the room and see him bouncing a balloon off of the dogs head, his kit sitting on his lap, zipped up, and he whines loudly with his back to me, "I"M CHECKING!!!!!!!" <br />"NO YOU"RE NOT!!!!!" I yell, because I have had it. I have told him a billion times, I have nagged, I have begged, I have done all I can to light a fire under the kids ass. But he just wont. <br />I give him pants. I tell him six times to put them on, and to put them on now, while I am trying to look up his carbs online. Every time I let a minute go inbetween. Plenty of time to put pants on. He emerges from the bathroom, (his dressing room) with bare legs, no pants. <br />The same goes with shoes. <br />Then the backpack. <br />I happen to see that his site looks like it is about to come out. I think about letting it stay one more day, but then I think about getting a call at my new job to come change a site. No, we have 15 minutes, we can do a site change in 15 minutes. <br />So, here we go again. <br />"nolan, get me a site please" <br />down to seven minutes, I am still searching for carbs online while intermittently helping Patrick with his sticking up hair, and knots in shoes, etc. <br />"Nolan Come ON!" <br />he yells back, "I AMMMMMM!!!"<br />but he's not. I find the evidence later that he is playing around with kitchen utensils that look like eggs with eyes on them. <br />Eventually all gets done. But not until I am at my wits end, and we are one minute late for school. Again. <br />So, in a last ditch effort to pound something into his head, I scream at him. I scream and I swear, and I hollar and I let him have it, all the way to school, the whole 4 block ride, the car is filled with the loud verbalization of my vile feelings of frustration and anger, disbelief, and... well, anger. I ask Patrick if he likes being late when his brother is farting around. Only I didnt say farting. <br />I pitted my kids against each other. Mother of the year material right here. I told him I loved him, but that he was driving me to the brink of insanity. <br />The whole time, torn with guilt at my own frustration, and my inability to give my kid soem sense of being loved when I drop him off for school. <br />Nolan gets out of the car, and pushes the door shut on his brother, who is trying to get out. The door bounces off of Patricks foot, and I flared. <br />'GET YOUR ASS BACK HERE!" I screamed. <br />Then I gave Nolan yet another verbal lashing about his attitude. And when I saw it in his eyes, the defeat, the dejected look... I started to cry. He then looked shocked and more hurt... guilty too. He turned around and walked into school, shoulders slumped, totally cooked. <br />Oh god. <br />what have I done?<br />And I cried all the way home. <br />The guilt of hurting your own childs feelings is immeasurable. <br />I cant stand myself today.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com3tag:blogger.com,1999:blog-38393063.post-85792892652022006722008-03-18T20:51:00.000-07:002008-03-18T21:38:47.421-07:00Referrals.Blah. The remainder of this pregnancy will now be referred to as, "my 40 week immunosupressant" I said it today to my sons endocrinologist's Nurse, Cheryl. I was in rare form. It just came out of my mouth that way, because... thats what it feels like... That is my reality, and making fun of it makes it SO much easier to deal with. Cheryl really liked that one. I also had to get on the phone trying to get a fax number for Aetna. I ended up getting to the wrong department, and the guy would not give me the fax number... He said he didnt have it. "come on buddy, stand up from your desk and ask the guy next to you what it is then, would ya?" I wanted to say that. The guy was saying that he couldnt give it to me, and would have to transfer me to a department that was soley formed for the sake only of giving out the fax number to people like me. Cheryl and the gal following her that day for training walked in at that point. I was showing off a little, because I know Cheryl spends all day on the horn with jerks like this guy... I cant act jerky at work either, so I do it when I can. Poor Cheryl is holding on Queues like I was all the time for patients like us, just to get things covered. <br />So, like I said... I was showing off. "So, you cant give me the fax number, but you can transfer me to someone who can??? How come you dont get a company directory like that person does? Do you have to earn Tenure first?" <br />The guy was mad. "I just dont have it go give to you!" He said shortly. <br />"They should empower you." I said. "youre a human being, you know? You seem pretty smart to me... I think they are selling you short. Yes I will hold"<br />Cheryl laughed, and so did her trainee. I looked at her. "he cant give me the fax number" I shrugged. <br />Well, he deserved it. He chose to work in the corrupt innards of an insurance company. I dont feel sorry for him. He has to break hearts all day long. <br /><br />The fact is simple. Insurance comanies make more money by NOT paying for you and your selfish illness all the time. How dare you get sick and have insurance, what an outrage... What about the poor CEO's at these insurance companies who have daughters turning thier sweet 16 and want thier party on MTV, and therefore HAVE to fork over half a million for the entertainment alone? How can you look those poor girls in the eyes, as they tell thier chauffer to take them to the party planners to put down a deposit, and explian to them that they cant have 500 grand for entertainment, but have only 500 grand for the whole party? Do you want to be the one to do that???<br />WHO just said, "with all my might.." ???? OH that was me. <br />So, how about you people sucking it up some, and living with a little less for a minute here, and lay off on the insurance company. How in the heck are they supposed to run a successful profiteering business while people like you are filing new claims for "new and better" diabetes options. Settle down, people!!! It is JUST diabetes, Take your shot and suck it up, how 'bout???<br /><br />So today, I felt like giving insurance companies a little hell. So I did. All in the name of good fun. I guess if I call and waste a little of thier employees time with things they are not able to do... and sass mouth, then it will cost them a little cash somehow down the line... <br />and i am gonna get that from them one way or another. <br /><br />I have come up with ways to cost them cold hard cash. <br /><br />1. go to the ER for slivers and such. <br />2. Go to teh E.R. for low blood sugars. (after you treat of course) Do it every time. Youjust want to make sure there was no brain damage. <br />3. Have your doctor order more blood glucose strips. They cost a buck each. Ten a day for 30 days is... well, I dont have a calculator, but I bet thats more than like say... fifteen dollars or something. My doc ordered us 12 a day and thats what we get. I might up it soon. Two can play at thier game. <br />4. call the number and tie up the lines all the time with stupid questions, call to see if they got a bill yet. Call and ask what time it is. Find someone you like there and call. <br />5. Find out what your insurance company will cover for tests and labs, how often, and then ask your doctor to write a letter of medical necessity for twice that amount. At the very least, make sure that you get those tests as OFTEN as they will cover it. <br />6. Date an employee for inside company info.. if you are single, or you are sure your spouse wont mind. <br />7. file appeals for anything that is denied. They will pay a doctor a load of money to find a reason to deny you coverage. Then find out how much money they paid that doctor, (and I dont know any doctor that does anything for less than a grand) and then call them and ask them for a price comparison: which is more, paying for my 1000 dollar piece of medical equiptment... or paying six doctors a few grand each to fins reasons to deny coverage? and then say, "because we can keep doing this..."<br /><br /><br />Those are all I can think of. Fight your dirty insurance company, and bad bad insurance doctors and nurses. They have no soul left... if they ever had one. <br /><br />And have a laugh about it.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com0tag:blogger.com,1999:blog-38393063.post-91077172226467042142008-03-14T23:36:00.001-07:002008-03-14T23:58:21.479-07:00What sucks.I was feeling better. A lot better, Thanks to Mr. Zofran, Mr. Zantac and a lot of rest. I got back to near normal functioning level. I worked all week, and the only time I got a little sick was after dinner on the night shift, wednesday. I went home and barfed my guts out a few hours later. Blamed it on hyperemesis gravidarum. They say its rare, but I dont feel like the chosen one... That is for certian. After this baby, I am having my tubes tied, cauterized, torn out and beaten in front of other peoples tubes to make and example of them. Yes I really am thinking about that. <br />One thing I have been doing that makes this blog pertainent is checking my sugars here and there, all willy nilly like. I dont do my glucose tolerance test for another 4 weeks, so I have been checking. My post prandials are good, usually between 80 and 110. Pretty nice, except for the fact that I only eat very small portions at a time these days, and only a couple times a day-- lecture someone else-baby's doing fine. <br />But one thing consistent with the pregnancy and possibly me in general is that I have elevated fasting bgs. Usually around 118, 116, nothing TOO worrisome, (yes my doctor knows)but I have been noticing lately that number is creeping up. <br />Today was 135. And my post prandials are getting to be up to 120 or so too... not so great.. I am not too worried, I cant be too much of a wuss about some gestational diabetes... Really, I cant complain. The glucose tolerance test will be of interest to me, to see where I come up in numbers. <br /><br />All that said, There was a chill in the air today, after three really nice days. 9It got up to 58 one day, and that was glorious) But Nolan started getting stuffed up a little. <br />This afternoon I kept reminding the boys to shut the door, because I could feel the chill in my sinus... And that put me in a bad mood, because I know just what that feeling means. <br />The tingling at the back of the nares, like you swallowed a freshly opened gulp of soda right out of a glass bottle... Fizzy like. <br />Damnit. I am getting sick again. WTH is wrong with me????<br />How can I just get sick again, I just got OVER beign sick, I should have some type of grace period!!!!<br />This is not fair. Not again. Its like my immune system just packed up and left the moment the egg was fertilized... "well... I can see where I'm not needed!" huffed my immunities, and walked out the door. <br />Then tonight, I decided to check the sugars. Four hour post prandial- 136. Now, I know, we all have elevated bg's with infection. But now I am thinking that the sugars are running high, and that is why I am catching everything that comes within a city block of me. <br />And I work at the hospital. Great. <br />I am currently pursuing other employment, some less intense nursing... Mental health field... see, that stuff is not contagious. I am so tired of working with infection. I never used to catch anything, but now... I may as well lay in bed and cuddle with all my patients, because no matter what precautions I take... all of this stuff is going around... Most of it is droplet- contracted-- much more easy to catch, esp if you have an ill fitting mask, or a patient coughs, gets a miniscule drop on your skin, you absorb it, and viola-- you have a contagious illness that is going to put you out for a week. <br />*sigh* Only 20 more weeks. I am halfway there... <br />On the bright side, <br />If I am diagnosed with GD-- I am going to ask the doc to put me on the animas pump-- Then I will give it to Nolan when I am done with it. <br />I am still the lucky one-- Gestational diabetes goes away after the baby is born... <br />This kid had better be something special... I will tell you that much. SOmething tells me it will be.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com0tag:blogger.com,1999:blog-38393063.post-74226469065606134032008-03-06T20:37:00.001-08:002008-03-06T20:58:40.331-08:00Its been awhile. To everyone who likes to read these blogs, I apologize. I have been worked over and run ragged as of late. <br />But today I feel like I have a new lease on life, or... even own one, imagine that. <br />I caught influenza B at work, and.... being all kinds of pregnant, became very very ill due to it, got dehydrated, and my electrolytes went all to hell in the crafty little handbasket we hear so much about when we talk of that trip. <br />I was knocked clean cold for two weeks straight. I could not move. and in the midst of the fevers, the hacking and vomitting, I started to become dehyrated. <br />It ran me over, killed me, took me to the cleaners, bedraggled me, zeroed me, played me out, and all the euphamisms you can think of, and then... it enlightened me. <br />When I was at the hospital getting some fluids, just plain old Nornmal Saline for me thanks, no twist of lemon, No I dont want to look at the dessert menu, just saline for me please. <br />Enlightenment. I know you want me to get back to the inspiration for this blog, and you know what? I will. right here. I was ever so slightly acidodic. Meaning, my body was spilling ketones, and eating itself. for a few days that went on. <br />Now.... When I learned what my levels were, I first said, (the nurse in me did anyway) "well no wonder i feel like such a load of S***." My doctor laughed. Then I blurted out, "Jeez. My son probably feels like this half the time." <br />My doctor silently nodded. Then he sent me for tests. I drove myself to the hospital, (probably shouldnt have) and the moment my head was clear, it jumped back into my mind. <br />The things I expect of him when he feels like hell. <br />Pick up your coat off the floor. <br />when he feels like he is the floor. <br />Get dressed and do a correction bolus, and for the love of all thats holy would you stop drumming on everything?<br />Do your homework. <br />Carry your laundry upstairs and put it away. <br />He never says a word. <br />He must feel like he took five benadryl half the time and entered a lard eating contest, (urpy that is to say) and then tried to run six miles. <br />The kid is amazing. <br />I need to cut him some serious slack. <br />I whimp out after a couple of weeks of it, and here he is taking it all in stride, and growing into a responsible young man while he's at it. <br /><br />What the Hell is wrong with me?<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com0tag:blogger.com,1999:blog-38393063.post-57554831259675638372007-12-06T12:44:00.000-08:002007-12-06T12:45:02.781-08:00<object width="425" height="355"><param name="movie" value="http://www.youtube.com/v/Gg66MpUlOqY&rel=1"></param><param name="wmode" value="transparent"></param><embed src="http://www.youtube.com/v/Gg66MpUlOqY&rel=1" type="application/x-shockwave-flash" wmode="transparent" width="425" height="355"></embed></object><div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com0tag:blogger.com,1999:blog-38393063.post-87300912859756243522007-11-04T17:45:00.000-08:002007-11-04T22:51:08.054-08:00School dazeSometimes I get so mad that my head spins... I get to the point that I cannot even think straight. I want to break out of my own mind and scream... some type of release.... you know.... <br />But I am grown. And I can't do that anymore. <br />I have to act my age and try to fit in with society. I can't get a mohawk to express my dissatisfaction with society anymore. I am like a hippie that stopped hipping and went to work for the man. That is me. <br />So I take my kids to school, and I hope that all goes well. I encourage them to have thier own opinions, and not to care what others think. It seems to me that my oldest has a good grasp on this. He really could not possibly care less, he is like me... or like I was... <br />But my youngest... He cares. <br />Now dont get me wrong here, I would never do what I did if I thought that school were anexceptionally educational, enlightening and provocative place for them, , then I would not let them miss a moment. But, since I do see school as a sort of hum drum experience, (not at the fault of the teachers, or the adminstration, it is at the fault of American priorities) I do not rely on school as a place for my kids to gather information, or a place for my childrens minds to flourish... I rely on my giving them unique experiences, and allowing them to think for themselves. <br />They are smart. And to me... the grades do not matter much at all. <br />So what I did was I took them to the vet with me and a new dog we had. One reason was that I was not sure tht the dog would be coming home. He seemed sick, and I thought that they would be telling us to have him put to sleep. I wanted them to understand why if it needed to happen. <br />So, I called school, told them my plan, and the office lady cheerfully said, "OK GREAT!" and hung up. <br />But when I dropped the kids off for school an hour late, they got "a talkin' to" by the office ladies, telling them that "That is NOT a good reason for calling in late!" <br />They could have told me that when I called, but I am grown... and for whatever reason, it is easier and comes more naturally for them to come down on little kids for something that they don't make decisions on in the first place. <br />So my kids told me about it the next day. I was mad. I called school immdeiately and the phone was answered by Janice, the lady who does lunch tickets. <br />"Apparently someone has been telling the boys why they can and can't be late...." I started, and Janice, who is the one that the boys told me got on them first, said, "I'll let you talk to Jean, she's the one that deals with this." <br />Jean was on the phone in a few moments. She thought I should talk to the principal about it. I told her that if they had a problem, or needed to get something off of their chest, they all have my phone numbers and can talk to me. Patrick gets stomach aches over being in "trouble" and it is MY fault not his... <br />My kids asked about if I talked to them about the whole ordeal or not and I told them, that I would be talking to principal Kollars soon... <br />That is when Nolan said it. <br />-- mind you... I do not allow my kids to be disrespectful to thier teachers, or principals... they KNOW they will catch hell for being disrespectful, and they also know that I do NOT stand behind them for thier wrongdoings... I am not "one of those" parents.-----<br /><br />"Jean always says, 'Hurry up Nolan, I have other things to do!'" Nolan mocked a snotty, annoyed tone.<br /><br />"Uh... what?" I shook my head to make room for this information, scooby doo style... <br />Nolan repeated himself<br />"Why does she tell you to hurry up?" I asked... <br />"when I'm bolusing." <br />uh huh. telling him to hurry up and take his insulin... hm... I dont like the sounds of this, but... lets give her one more way out before we assume fault here. <br />"Are you... taking a long time, or is it taking a while to add up the carbs... or are you farting around in the office, or... what is happening when she says this?" I ask, trying to use the most laid back tone ever... <br />"No," he is exaperated, "I dont know why! She says it right when I walk in the office!!!" <br />oh no she doesnt. <br />I felt my neck start to go, my head go off to the right... and all I could think is, "them is fighting words!!!"<br /><br />Oh no. no she did not. Oh no. that is NOT going to happen. NOBODY is going to tell MY baby to hurry up and take his insulin ESPECIALLY someone who accidentally told him to bolus for what his blood sugar level was one time... 103.. after he'd eaten less than 30 carbs for lunch, then called me, saying that they did not have anything for him to eat to even that out... <br />Oh no she did not. <br />It was like Nolan could read my ready-to-fight-someone mind.... <br />"she says that every time mom!" <br />I could feel my blood start to boil.<br /><br />************************************************************************************<br />I have had one entire weekend to let this get better, or fester... and I must say that it has done a bit of both. I feel more put together about it, but I feel more angry too. The level of frusteration I have is not natural. I only wish something could be done, but to force adults to be nice to a kid that they dont want to deal with is just not easy to do. <br />I could hover over them daily and make sure they dont say anything mean to my kid. <br />His life is hard enough with Diabetes to deal with... <br />Let alone adults acting like complete jerks. <br /><br />*sigh* <br />who could be mean to this kid. <br /><br /><object width="425" height="355"><param name="movie" value="http://www.youtube.com/v/3SjEdmr7gu0&rel=1"></param><param name="wmode" value="transparent"></param><embed src="http://www.youtube.com/v/3SjEdmr7gu0&rel=1" type="application/x-shockwave-flash" wmode="transparent" width="425" height="355"></embed></object><br /><br /><br />You will have to turn your volume way up... it was windy.<div class="blogger-post-footer">http://jendean.blogspot.com/</div>Jenhttp://www.blogger.com/profile/08699368692469314809noreply@blogger.com4