Baby Steps Forward Perhaps?

Sunday morning brought a vision that shocked me to the core…my son weighing his cereal! I was tempted to take a picture but I didn’t want to scare him or prevent him from doing this again. 

Now that may not seem to be a life altering event to many.  It is something he has been told to do on a number of occasions. I have even shown him how his eyeball has been seriously off but telling him and seeing it happen are two very, very, very different things! There was no harping. There was no “Where is the scale?”  He actually did this on his own! Did it result in perfect bg levels? I have no idea.  Honestly, days later I remain so shocked by this occurrence that I haven’t checked. I am just hopeful that he is learning.

That is, I was hopeful until 3am this morning when he bg level was dropping after a strenuous workout the night before.  At that point I was just irked that he hadn’t listened to me.  I had told him to reduce his basal after exercise. I was positive that he hadn’t.  Once again, I was up for an hour in the middle of the night after being ill the day before.  Something was going to have to give!

I decided that if he hadn’t listened to me and caused me to lose sleep because of it, I would be taking back my sleep in the morning and he could deal with making his own breakfast and lunch (yes, my kid is spoiled and Mom cooks a hot breakfast and prepares his lunch daily despite his age)!

Well it sounded really good at 4am. It still sounded great in my mind at 7am when I was prepared to dish out my consequences to his ignoring my instructions. Unfortunately when he told me that he had done what I told him.  He exercised hours before bedtime and felt that he was okay (as per Mom’s instructions). My argument was gone.  He was learning. He had made a judgement call based on advice received from Dr. Mom and she was wrong. Darn!! I headed of to the kitchen to get breakfast.

We discussed the fact that exercise can have an impact up to 24 hours later.  More work to do but dare I hope that after all of these years, some of my lessons are starting to sink in??

Twice a week should do it!

Over the holidays, my boys  and I were sitting at our kitchen table enjoying an after supper conversation.  My youngest son happened to look at a drug store receipt on the table and said "$160 for a month of test strips? That's crazy!"

I quickly explained that sadly that did not cover a month's worth of testing.  I also reminded him that there was still the cost of insulin and pump supplies to add to that monthly diabetes care bill. 

He was completely incensed.  He was adamant that he would NOT be spending that kind of money on his diabetes care when he was older.  This was insane by his calculation.  No one should have to pay such crazy amounts to stay alive.

He decided that he would have to seriously cut down his testing when he was forced to cover his own supply costs.  He informed me that when we went to diabetes events and he filled out cards, they always asked if he tested only a few times per week.  He had to state that he was the child of an obsessive tester and tested closer to 10 times per day.  My young son felt that these cards(geared to people with Type 2 diabetes) justified him not testing in his adult years.

I groaned and tried to explain to him that a lack of testing was not an option to consider.  I had invested in a Disability Savings Plan for him and reminded him that it would give him some money towards his diabetes supplies when he was older.  I also encouraged him to keep contributing and taking advantage of the free government money.

This did nothing to pacify him.  He remained horrified at the cost of his care. He decided that it was the job of the government to cover his costs.  If they did not pay for his supplies, he would die. It was simple.

I wish it was that simple. I wished that governments actually cared. His throught processes scare me at times. I pray that he does have good coverage when he gets older...and more importantly that he uses the tools available to him to keep himself healthy.

The Dog Did It!

"You were really high last night.  Did you forget to bolus something?"

"Mom, you know how I eat in my sleep?"

"Yes, I know that if I feed you, that you will chew without waking. What about it?"

"Well, I think that is why I was high last night! I am pretty sure that while I have been sleeping that Sweedums has been feeding me.  You know, she is getting me a sandwich and making me eat it. She has probably been force feeding my some of my Christmas chocolate too!"

Oh my! Where does he come up with this stuff? "Perhaps if she feels the need to feed you at night, you could remind her to bolus as well?"

It may be a new year but somethings never change!

The boy and his dog, Sweedums...she does have a guilty look!

Once again...

Why did I get such perverse pleasure from my son freaking out about his blood glucose dropping and my relatively cavalier attitude? Because this week brought us back full circle to Mom freaking out at him and him basically wishing that I would simply go away or at least give up the rant. 

Once again, I looked at his meter.  Once again all of those readings that he supposedly had but could not remember five minutes later were because HE DID NOT TEST!!!! Once again I lost it. Once again I yelled. Once again I told him that I HATE being lied to. Once again I said that he cannot be trusted.  Once again I wanted to sit and cry.  Once again I worried about the future. 

I still want to cry. I still am frustrated.  I still hate diabetes more and more.  My son is a teen. I get that.  He has a serious case of "teen brain". I get that too. He is not my first teenage son but thankfully he is my last. 

I hate that no matter what diabetes is there wreaking some sort of havoc in our lives.  There have been a lot of changes in our lives recently. I have a lot of other "stuff" on my mind. I am trying to create a new business.  I am dealing with new budgetary issues. There is Christmas coming up, my car that needed brakes and tires and so much more of life's daily challenges. I really did not have a lot of time to sit and hover over my son to make sure that he was testing when I asked.  It would appear that I needed to make time but... I DON'T WANT TO!!

I am tired of being the diabetes police. I am tired of testing, bolusing and counting carbs. I am tired of waking up in the middle of the night and convincing myself that I do not want to roll over and go back to sleep.  What I really want to do is to get out of bed, wander down the hallway, find my son's glucometer and test him. 

No I don't!! I want to have a "normal" life. I want to worry about him being happy.  I don't want to have to be the one to remind him that when he looks at his budget in career class, he needs to make sure that he can afford the extra $400+ per month required to keep him alive. I don't want to be the person to say "I don't think that career will pay you enough." "Do you think you will have good medical benefits with that job?" 

These aren't conversations that I have with my other son. My biggest concern with him is that he spend all of his money on restaurants and exotic groceries.   

We have been doing this diabetes thing for almost 13 years.  Some parts are easier...and some parts remain frustrating. Despite that, I am done. I am tired. I want off of this ride.  We have been on it for too long and knowing that my son will never get off tips me closer to the edge.

Once again I rant and scream. Once again it will change nothing. Once again I will breathe.  Once again my son will test in front of me. Once again I will pray that he truly "gets it"...one day. 

A1c Guilt

Its weird.  When we get our A1c, I hate telling other people what it is.  We work hard but I know a lot of other people who work hard too. We use a pump but they use a pump too. The only CGM we have is our own regular testing. Despite all of this, I have friends who struggle to see an A1c under 8.  We have rarely, in twelve years, seen one over 7.  

I have no delusions of this lasting forever. I know my son will hit his own walls when Mom is not around. I know that I have provided a cushion for those years however. I have been told this cushion may help him during those rough years reducing the chances of complications. I pray so. 

Despite that fact, I rarely publicly state his A1c.  I feel guilty because we succeed where others struggle. I don't see us doing anything different. Maybe we are just lucky. 

My son actually sees diabetes has relatively easy! That scares me.  He says,
"its simple.  You count the carbs.  You give the insulin.  You test. You adjust. What is the big deal?" 

Wow.  I know its not that simple but perhaps it is good that he doesn't see it as that big of a burden or a problem. I know he sees it as an annoyance. I know he sees it as something he would rather ignore but it does not appear to be a "challenge" to him.  It is simply his life.  I guess that is one thing to be grateful for. 

She Kicked Me Out!

Yesterday we had our regular clinic appointment...a day dreaded by mother and son for none of the obvious reasons.  We simply find it rather boring.  Because Mom is a bit obsessed, learns a lot, and surrounds herself with diabetes experts, diabetes clinics rarely have much new information to offer us. I also make it my job to educate my son so again, he is not often shown anything that he hasn't already heard about. I will say that the people at the clinic are pretty respectful of this but we still must wait to see the required list of people...and we are easily bored. 

Yesterday was no exception...except when the doctor came in.  She asked my son his age and then asked me to leave the room! Wow! I have never been kicked out before! Well from kindergarten but not a doctor's appointment!  

I know that he needs to learn to speak for himself and to communicate with his diabetes team.  He needs to know his rates and we are working to get him to understand where to make changes and how....BUT my son is super quiet! Don't get me wrong, once he knows you and is comfortable it is impossible to keep him quiet but for the most part he is very reserved and mumbles one word answers. How was this going to work? 

I paced the floor outside of the examining room.  The support staff looked at me and said "Kicked out, huh?"  I smiled and nodded.  This was obviously a common practice.  As I paced, and worried that she would get no information out of him. I realized how important this was.  He needed to speak up on his own now before he reaches 18 and sees a new doctor.  I try to make him answer questions when we see his team but often he defers to me.  This one on one session would make him answer the questions. 

It seemed like I was wearing a hole in the floor. What were they talking about? Were they getting to talks of sex, drugs, alcohol and diabetes? That would be good...not that I want my son engaging in any of those activities, especially at his young age, but I don't know enough about them to talk to them from a diabetes angle. 

Finally he came to door and beckoned me back in.  I tried not to be too obvious in my relief.  As I sat down, she turned to me for all of the basic information that my son could not provide...basal rates, carb to insulin rates, etc.  For some reason under the pressure of having to do it with a relatively new doctor in his presence, he had forgotten where to find the relevant details. 

I gave her the information she wanted.  She signed our DTC form without a second glance and refilled a prescription she had given my son during his last visit.  After she left, while waiting to see the other members of the team, my son expressed his approval of this doctor. Not only was she a nice person (and she is a nice looking lady which I am sure is not lost on a 15 year old male), she also told him that since he had great control he could forgo having his annual blood work.  She was a star in his eyes! I hope he realized that it was the hard work of maintaining good blood glucose control that allowed her to give him that reprieve. Either way...my little boy is growing up! Where has the time gone? I am guessing I will be kicked out on a regular basis now.... 

Why I do it

Over the past few months I have heard a lot of anxiety and stress when it comes to testing your child with diabetes' blood glucose at night. Its a topic that can divide the diabetes community and raise blood pressure faster than the mention of Halle Berry or pumping versus multiple daily injections. It can create strife among friends and cause a serious strain on marital relationships. 

I am a night tester. I have been for the past twelve plus years. I will continue to do it for as long as my son lives under my roof. When he leaves my home, ideally he will have a CGM (that he will use) that will take the place of his current CGM aka Mom. 

My son sleeps soundly at night. He has looked the most peaceful when his bg levels have been out of whack.  That terrifies me.  In recent months, he has woken up to the occasional low--much to his dismay and his mother's delight. I do not yet trust that this will happen all of the time and as one adult pointed out in The Diabetes Dad's post on this topic, there is no telling how low he was or for how long before he woke up.  

Dead in bed is a very real fear.  Its something that too many people in our diabetes community have seen first hand.  I was recently told that there are only four cases of dead in bed in the WORLD each year.  The point was made to help quell over zealous fears but I think some fear is a good thing. It gives you respect--respect for a disease that is ruthless and deceptive.  

Diabetes does not show itself in anything but bad attitudes, fatigue and occasionally nausea or thirst.  You see it when a glucometer is pulled out, when a syringe is injected or pump peaks out from a belt around someones waist.  It does not however tell you before you go to bed, "Please know that while you are sleeping peacefully well, and despite that basal adjustment you made for the yesterday's activity last night, tonight your child's insulin needs will still be low.  Since you didn't realize that and did not give him an extra snack or reduced basal rate, I will make sure that his blood glucose drops really low tonight.  You won't notice. He will be peaceful and you will sleep pretty sound after all of these nights of broken rest.  Don't worry, I will take care of things. I will deplete his liver of glycogen and this time? Well this time I will cause a seizure in his body, shaking his bed and waking the house.  You will get to him in time, take him to the hospital but none of you will take me for granted again....until the next time." 

That is not the only reason that I test at night. I test out of respect and a desire for knowledge.  Knowledge is power and if I do not test my son during the night, I have no idea about the highs and lows he may have experienced. He may go to bed and wake up in range but during those 10+ hours, he may also have been low, high and a few readings in between. I am only human. I will not catch them all but I will catch a few. I will get an idea and it will allow me to keep him healthy. 

Night testing is a family choice. In my family, I choose to do it. I am not obsessed by it. I naturally wake multiple times during the night (and did this before diabetes moved in).  When I wake, I am okay with stumbling into my son's room and testing him. Its selfish--I feel better doing it. Again, the choice is yours.  Do what works for your family but make sure your choice is an informed one. 

All in a night's work

"Your correction didn't work." 

"What do you mean?  Did you fix it?"

My son looked at me a little strange. "There must have been a kink in the tubing or something.  The correction didn't work. I fixed it when I got up."

It was now my turn to be perplexed. "Why didn't you just fix it last night when I corrected you?" For some reason I feared an occlusion alarm last night but really didn't worry because my son was awake and would be able to deal with it. 

"Why would I fix it?" he asked. "I was asleep." 

I told him that he was not asleep. He jumped up in his bed when I took his finger to test and then sat there staring at me.  When I did test him I asked him if he felt high.  He said no so I retested to make sure that the meter was accurate. I also asked him if he had been high before he went to bed but he didn't think he had remembered to do that last test. 

My son continued to look at me like I was insane. "I did not wake up last night. I don't remember you coming in to test me. I never talked to you after you went to bed until now." 

The look on my son's face when he jumped up in his bed did make me wonder if he was low or a little bit out of it.  My boys do talk in their sleep and have been known to climb walls while chasing someone in their dreams so the fact that my youngest failed to remember any of our conversation last night is not overly concerning.  The fact that he was high after being lower the night before is more likely attributed to the incredible amount of restaurant pizza than it is to a rebound. All in all, its just another night in our slightly odd life with diabetes! 

I often feel like the mother in Robert Munch's "Love you forever"

Diabetes won't fill that space

With a new school year and a new teacher comes the ever popular "back to school" essay.  My youngest son never ceases to frustrate me when it comes to such things. Two classes and four days later, his essay on introducing himself consisted of four sentences--his name, his age and where he had lived in his life.  Getting more out of him was going to be torture...and it was! Thankfully, after hearing that he could write pages on the importance of the advent of a toaster to heat his Eggo's each day, it appears that the frustration was saved for essays done at home where Mom could see them and go insane. 

His essay was due today, so at 9:30pm last night he came down to my office. I was working on my own "homework" (an online course that I will be telling you about in greater detail in the coming months) but he was stuck.  He had to introduce himself to his English teacher. 

"Mom, pretend that you don't know me and tell me all about me."  

"How can I tell you about you when I don't know you?"  

"Mom!"

I began with his love of animals, the fact that he enjoys being outdoors and on quad, his gaming addiction and ended with the fact that he cheated death at age 2 and now lives with Type 1 diabetes. 

He proceeded to write about his pets in detail.  The two dogs, the cat and the fish that respond to any name as long as there is food involved.  He went on to describe the quads that he has at his father's house as well as the one he owns here.  He wrote about his trip in the woods that very day and what he enjoyed about it.  He told her about his favorite Xbox game and the origin of his gamertag.  

I asked him about writing about diabetes.  He told me that he had too much space to fill up and diabetes would only take up a few lines.  He wanted to fill out the other paragraphs first.  He expanded on his life. He was not just 15 but he was the youngest of two boys.  His older brother was now living with him while going to school. He had family living around the globe.  

Again, I suggested the diabetes part.  He added more to his Xbox addiction sighting exactly what he liked about his favorite game. He mentioned that he has traveled a lot over years.

After a torturous hour, he was done. He had one page about himself! He had paragraphs. He had information and he was able to press save. As I watched him leave, I noted that nowhere in his essay was diabetes mentioned. In his world, it was not important. It did not warrant discussion in his essay. It was a non-issue for him.  If only it was really that simple. 

I am not slack, I am warm and fuzzy

My son has been back to school for a week now.  Unlike previous years, I did not send any information to school.  I did not contact the principal. I sent my son's supplies to school with him and planned to send out a detailed email to all of his teachers within the coming days. 

I am not a slacker who no longer cares about her son because he is now technically in high school. Its simply the fact that the majority of his teachers have had him at one point over the past two years and have been sent my information before.  There are also now two children with diabetes in his school.  This means that they bring in a nurse at the beginning of the year and "educate" the school.  I know that this is contrary to everything I tell people.  I preach that you should be in on these meetings and I still feel that way but again, these teachers have been educated by me for a number of years so I don't feel like being overly pushy on this issue.  

I also now have two other fall backs in case of emergency this year.  A teacher that my son had at his former school (who taught my son for three years and was AMAZING with his diabetes care) is now teaching a lower grade in my son's new school.  My son also has a teacher (that he has had in the past) who's husband has Type 1 diabetes, is more than willing to be there in any emergency and will handle things like glucagon if need be.  I love these people!! They allow me that warm fuzzy feeling of knowing that my son is safe at school. 

It was therefore somewhat surprising when my son handed me a folder that I had created two years ago and said "My teacher says that this needs to be updated by my doctor."  I looked at him like he was nuts.  

"Your doctor?" 

"Yeah, that's what he said and can you fix that picture of me? I look like a complete dork!"

I shook my head and took the folder.  I was glad that previous homeroom teachers had seen fit to pass the "red folder" on to the next year's homeroom teacher.  The picture was a little dated but based on the fact that the folder contained information on my son with notes to contact me, my name and my cell phone number along with basic facts about diabetes care, diabetes, highs and lows, and insulin pump use, I am thinking that the teacher did not take the time to actually "read" what he was given. 

Either way, I will update the information...and the picture.  I will get myself in gear and make sure I contact all of his teachers once again to let them know our basic diabetes care rules--testing in class, access to the washroom and water, as well as testing to know that he is in range and firing on all cylinders before exams.  

Its good to know that they are still taking diabetes seriously because sadly it does not "improve" with age the issues simply change a little. 

I am guessing that this won't be his first choice for replacement photo either :)

Isn't diabetes enough?

We see the eye doctor on a regular basis. Well we did until we moved. We had a fabulous, exceptionally thorough optometrist previously. Each year my son and I went to see her. I went because I am blind as a bat and too chicken to see about laser treatment and my son went in order to keep on top of possible diabetes complications. 

I knew eventually we would need to find a new eye person and we did.  My son's diabetes clinic set us up with a pediatric opthamologist.  Today was the appointment.  I expected it to be short. The sign said to expect 1-2 hour appointment length or more if you were a new patient.  Holy crap! We were going to have to camp out and I didn't have a book to read! 

Our appointment was at 8:30am.  The doctor was late.  We finally got into the office and the exam began. My son did poorly. He had trouble with the largest of print.  Things were not looking good. Part way through he pulled out his glucometer.  Crap (again!).  Highs (or lows) would impair his vision.  He had been high the day before after breakfast.  How the heck were we going to know if he needed glasses or not? He was high.  How do you schedule an appointment for when your bg levels are perfect?? Diabetes ruins everything.

I had not really thought about diabetes messing with an eye exam before.  My kids did not inherit my poor eyesight and I never think of something else being wrong. In my mind, the opthamologist was about diabetes not eye sight. There had been close calls before--"we will watch this but he will probably need glasses later."  but they had never amounted to anything.  Was today going to be different? 

My son had his eyes dilated, she re-examined him and decided that he would see for another day.  His eyes are not 20/20. They are a little bit worse but not enough to worry about.  She left it up to us to discuss and decide what to do.  I asked if getting glasses now would prevent further deterioration of his eyes.  She said no. 

As we got into the car at the end of the appointment, I asked my son what he thought. He said that there was NO way he was having glasses, contacts or anything else.  He could see. He could see the writing at school. They had said before that he may need glasses but his eyes were better at the next appointment. Today was no different. He would not need glasses. He had diabetes. One thing in life was plenty. 

Well, I asked didn't I?  I agreed that we would wait and see how things went. If he felt he couldn't see, he was having problems at school or next year she said things were worse--glasses it would be. He was right though--shouldn't one health issue be enough for any person?