Sunday, September 06, 2015

A long time coming

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

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

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