Monkey See, Monkey Do

Last night I was flipping through channels, killing a bit of time before I took my weary body to bed.  I watched a show about a trans-gender case, got bored, moved on.  I came across the "Celebrity Apprentice".  I have never seen the regular "Apprentice", let alone the celebrity version but I noticed that Brett Michaels was on.  I had read that he was going to be on the show and he would be donating his winnings to a diabetes charity.  I don't really follow the guy very much. I did enjoy listening to Poison back in the day when I had no clue about diabetes or the fact that the lead singer of the band lived with this disease. I decided to check it out and see what the show was all about. 


It turned out that the show was divided into women versus men.  They each had to run a restaurant for a set number of hours and raise as much money for charity as they could.  The team that raised the most won all of the money.  The show progressed and then they showed a preview of what was coming.  Brett Michaels was going to go low on tv! Now how cool is that?? Not just talk about it but diabetes was going to be real and on tv that night! I called for my youngest son to come and watch the show with me. I told him "Hurry up, Brett Michaels is going to go low on tv! How cool is that???" He thought it was pretty cool and even knew who Brett Michaels was.  


While we were waiting, I had my son test.  He hadn't been doing much but it was soon going to be time for bed and I wanted to have a clue as to where he was sitting blood sugar wise.  It appears that waiting for Brett to go low had a greater impact in our house than I realized.  When my son tested he was low as well! Crap but at least he was still up when it happened.  He grabbed himself some juice and we sat back waiting for the "low" scene to appear...and we waited.  It turns out that they were showing you what would happen in about another half hour or more on the show! In the meantime, my son retested.  He was now LOWER than when he drank his juice! What the???????  Okay, this time Mom is going to get the glucose source.  "Do you want juice or tablets?"  "Juice would be could" was the reply.  Alright then, a big glass of juice it is.  We would get this low out of the basement one way or another.  


We continued to watch the show.  Brett finally goes low.  He is given a coke with a nice amount of ice and stands off to the side to drink it.  My oldest is watching him saying "He is low! What the heck is taking him so long to drink that? Would you finish that buddy? You are low!"  Okay, that child is well trained! It appeared that Brett recovered from his low much faster than my son.  Three glasses of juice later the child is finally in range.  We sit back and watch Brett Michaels' reaction as he is told that his team has won and he will get to give $100,000 to his diabetes charity.  Awesome!


He is visibly moved.  As he walks out of the boardroom, he continues to say that he has lost so many of his friends to this disease.  So many of the people that he grew up with have died because of this disease.  My heart breaks.  Here is this man who is out there (and from what I understand some of his reality tv stuff really puts him "out there"), in the public eye and so tormented over this disease that drives us insane each day.  Fame and celebrity may allow him to win a great amount of money for charity but it does not protect him from experiencing the lows of this disease.  Congratulations Brett! I may even have to try to stay awake to watch again next week.

Can you say Wow!

The other day I was on Facebook, no that is not the "wow" factor".  Anyways, I was on Facebook and noticed that someone had posted a request to know if people were planning a special green meal for St. Patrick's Day on the 17th.  Again, no big deal normally about people celebrating St. Patty's Day.  Its not a day that I celebrate but it is a date that sticks in my head.

The 17th of March is a day that I think about every day.  Its a day that I obsess about each year.  Its the day that my world changed completely. Its a day that I found my focus and entered a world that I knew nothing about. Its the day that changed the life of my entire family forever.  

So you get the idea that I am a little obsessed by this day. This year the day was especially important because it will be 10 years since diabetes came into our lives.  Ten years ago on that date I did not know if my child would live or die.  Ten years ago on that date I would spend a lot of my time praying and willing my son to live. After March 17th, ten years ago,  I would began a journey to learn everything I could about Type 1 diabetes. 

Imagine then how shocked I was when I realized with that post, that I had NOT thought about that date.  I was not waiting for it to happen. I was not planning my memoirs for that day or any other event to mark it.  I was instead focused on a date later in the month.  I was obsessed with my other son turning 16.  How could that be happening?? I am way too young to have a 16 year old child! How did that little baby grow up so quickly? How could my little boy be old enough to drive in March of 2010? I was obsessed with having a child old enough to be legally allowed to drive.  How would I handle my "child" driving my vehicle? I am too young to have a child driving. I must have been like 12 when he was born! 

I was actually very happy to realize that the theme that I had created for the month of March, I was beginning to live.  I had decided that the first 10 years with diabetes were about survival, learning to cope and staying healthy.  The next 10 years and then some would be spent celebrating.  My son is alive. He is healthy and diabetes is part of our lives.  It is a huge part of mine as I help others with the disease.  It is just an annoying but necessary part of his.  It is no longer the sole focus of our lives however.  There were other bigger milestones that eclipsed diabetes and that truly was a huge and wonderful WOW! in my life. 

Why do they do this?

This topic often comes up when speaking with parents of children with diabetes. The child becomes non-compliant (don't you just love that word?) and the endo threatens to take the child's insulin pump away from them.   I really do not understand the reasoning. 


If you child is not bolusing, testing, etc--basically not doing their daily diabetes care by pressing buttons, what makes the professionals think that drawing up a syringe will make them that much more accountable? I think I would feel better if my child had a pump because then I would know that the basal rate is at least being delivered.  If they are on shots they may miss injecting the basal dose the same as they are missing the bolus amount.


Maybe they think that if they are injecting that Mom or Dad will be watching the injection and make the child more accountable? What is the difference between  Mom or Dad watching/doing an injection versus them bolusing or supervising a bolus on a pump? I am honestly stumped by this. 


In defense of the endos however, I have heard of parents who felt that, in some cases, this can be the way to go.  It has been suggested that the psychological implication of being attached to something like an insulin pump 24/7 can become difficult for preteens or teens.  The constant reminder of their illness becomes too much for them. We know that they just want to be "normal" kids and not stand out in any way.  They are often too young to realize that normal is just a setting on the dryer.  They have yet to realize the importance of being an individual. 


Another reason for "taking away" the pump has been to restrict freedom.  In all honesty, I do not exactly understand this reasoning.  The idea is that without the pump the child will have to go back to routine meals and eating habits.  I find two problems with this.  First is that kids will be kids and if they are sneaking food or not bolusing, the lack of a pump and having to inject for food will not change this.  If they didn't bolus they will most likely not inject.  If they were sneaking and not telling what they ate, why would the lack of a pump make that behaviour change?  The second problem I have with this is that most people using injections will now be put on a long lasting insulin like Lantus or Levemir.  They do not require the strict eating schedules of NPH and regular insulin.  They allow a child to pick and choose eating times. Yes, they could be put on an NPH regimen but why would you do that when research shows the basal/bolus regimen to be better for your child? 


The biggest thing I have taken out of this debate is the fact that an endo should NOT be the one to say your child is not complying and should be taken off the pump.  It should be a decision made by the family in consultation with their diabetes team.  The child may in fact need a "pump holiday".  They may be overwhelmed and need a different method of delivery to help them cope. It should not however be a punishment with the pump being the reward.  Good health is the reward and it should be obtained in the best way for the person living with diabetes...and of course the sanity of the parents.  

2010..its not just about the Olympics

With the arrival of 2010 many people began focusing on the Olympics in Vancouver. The hard work of athletes would soon be put to the test. The years of hard work by Olympic organizers and volunteers would be put on display for all of the world to see. I, of course, had to be different!

I was happy to see that the world would get to share in the beauty of my home province but 2010 meant something very different to me. It was the year that marked 10 years since diabetes came barreling into our lives like an elephant in a china shop. It was not invited but like any unwanted guest, it made itself quite at home and left us to pick up the pieces after its destruction. We were forced to find away to live with...to live with what? A new family member? It was that annoying stray that came in when the door was left open and refused to get back out.

For ten years that unwanted guest, that pesky stray had plagued our house. It demanded meals at set times but we learned how to get around that with advanced use of rapid-acting insulin and ultimately an insulin pump. It demanded money for its upkeep but again we fixed that one by advocating for an insulin pump program. Many of our diabetes related costs were now covered by our provincial health plan. Our grouchy stray demanded blood...literally. It won that battle but it was losing ground in other homes. As more insurance companies provide assistance, many more people who also live with diabetes are able to use Continuous Glucose Monitors and change the way they monitor their diabetes.

The constant demands of this stray called Type 1 diabetes that had moved into our lives was a strain. Each year I was reminded of that fateful day when diabetes moved in and try to claim the life of my child but I began to see 2010 as a year of promise. Diabetes made demands but look at how we were able to meet those demands? There had to be positives about this pest. There had to be something good to say and there began my quest. I would find the best things about diabetes and focus on that for the next ten years!

As I came up from my own depression and despair, I began to look around and was reminded of all of the other incredible people who were hitting this same milestone or who had already sailed passed it. I saw small children who were now becoming teenagers. I saw an incredibly amazing group of friends. There are many great lines about friends but diabetes has somehow brought me the most amazing friends that a person could ever ask for. There is Sharon who threw me a life-preserver when I didn't know how in the world to make a two year old eat the food required to meet his insulin needs. There is Michelle who was there when we came home from the hospital to talk to and went on to become a great friend. There is Darlene and Shirley who helped round out our therapy and advocacy group. There is Stacey who ensured that we never went without supplies, who welcomed us into her home and is such an amazing friend. There is Jeff, Brenda and Laura who have given so many so much but have been there for me through some of the darkest days. There is Kim, Karen, Cheryl, Mike, Michelle, Lauren and so many, many more who have been amazing friends, wonderful confidants, and inspirations to challenge us to do more. I could go on and on and on. There are so many more of you out there who have welcomed us into your homes, who have worked side by side with us on advocacy issues and diabetes project. You have helped me to create change in the world of diabetes. You have been there with a kick when I needed it, a hug when it is required, amazing advice and a shoulder always.

Diabetes came in as an unwelcomed guest. It arrived like that annoying relative that doesn't know when they have overstayed their welcome. It has also brought the best gift of all...friendship. I would give anything for my son and so many more not to have to go down this road called "life with Type 1 diabetes" but I would never trade the incredible friendships and amazing people that I have met because of this disease.

While the world watches the Olympics in Vancouver, I wait to return home as well but for a different reason. In August, my family will head to Vancouver to meet up with its extended "diabetes family". Catching up with friends, sharing ideas, and loving the best part of a rotten disease. We have our own athletes and our own heroes. They don't always have gold medals around their necks but they have captured our hearts and truly become a part of our lives.

How 'bout 11?

"Mom, you didn't test me last night"
"Yes I did, but if you are worried about it and you are awake maybe you should be testing yourself during the night. It would be great to give me a break after 10 years."
"A break? That's okay."
"But you should get used to testing yourself. If you are awake anyway why not give your old Mom a break?"
"How 'bout we go for you testing me every night for eleven years instead?"

That was the conversation I had with my son the other morning. I had to laugh to myself when he suggested that I didn't test him. He never wakes up when I do test him unless he is high and needs to use the washroom or hasn't gone to sleep yet when he was supposed to. This child sleeps through everything! I drizzled snow on his bare back that very morning to wake him up (after calling him and blaring music) and he continued to sleep. He used to sleep while eating a sandwich after a low. He can sleep while drinking a juice or chewing glucose tablets. Its all a little unnerving but I watch, make sure everything is chewed and swallowed and that he doesn't choke.

The fact that he is such a sound sleeper does scare me a bit. He sleeps through the alarms on his pump so a CGMS won't get him out of bed to treat. The only upside is that when he sleeps at a friend's house, he does wake up to the alarm...well maybe the friend wakes up to the alarm and gets him moving. Either way, he does test when he isn't at my house. He does wake up to the alarm when he is with his father...and then rolls over and sleeps while waiting for Dad to get up and test him.

The upside is that he is still young. He has a few more years before Mom starts to really get on his case about waking up himself. For now he is spoiled...Mom gets him up, Mom cooks for him, Mom tests him, and Mom gets his glucose for his lows. If he is really lucky he will marry a girl who will do even half of this but he may be pushing that one!

After 10 years, I am getting tired of waking up at nights and testing. I have been waking up through the night for 16 years...yes long before diabetes, so I am sure that I will continue to wake up at all hours. If I am waking up I might as well make sure that he is safe and I have tested him especially since the rest of the conversation went something like this...

"I have to be tested at night. I might go low and die if no one tests me."

Ouch! I did clarify that he would probably just go low and worst case scenario have a seizure. Sadly he knows the reality. While some will argue that your body will kick in, you will rebound, and all will be fine except for a nasty high the next morning. This may be the case for many but my son and I have also seen a different outcome. He knows that I have had friends go low at night and never wake up again. Its not a reality that I enjoy my young child being aware of. He takes it in stride but he knows just the same. More fun with diabetes....

Diabetes Counterculture?

For those of us who have been living in the diabetes world for a year or to, it is very obvious to us that we have our own language and way of doing things. It is common for a mother of a two year old with diabetes who is throwing a tantrum to state in a stern voice, "You had better be high Missy!!" They are used to the odd looks that they receive as people are racing to call Child Protective Services on the parent who seems okay with their toddler being "high".

I came across a tidbit today in the Children with Diabetes Humour section that fit with this. The family was eating in a restaurant that served alcohol. The five year old with diabetes was hungry and impatient. Mom was looking for alcohol swabs to try and clean something off of her fingers. She began chanting, "Where is my alcohol? I want my alcohol!" For some reason people looked at them a little funny. Those of us who live with diabetes see nothing strange about this.

Maybe we are the odd ones? We are the ones that are very nonchalant about the amount of blood splattered on our sheets and clothing. We have learned to buy dark sheets and avoid white at all costs. Personally, I think my son took the blood thing to a whole new level the other day. I sat down in the living room and on the coffee table was his test kit (and of course a pile of dead strips). I was shocked however when I looked at his lancing devise. That puppy looked like it had been murdered!! It was amazing the amount of blood all over it. I swear I thought it had been part of some sort of deadly attack. When I asked my son about it he was very calm. He saw nothing wrong with it. I was positive that if a police officer had walked in at that moment, he would tear my house apart looking for the dead body. I could give any CSI episode a run for its money in blood splatter!

But our oddness seems to be spreading. Our terms that so often sound like something out of a counter-culture...being high, needing alcohol, having a shot, seem to have made their way into main stream media. Last night I was doing some research on an athlete. He is heading to the Olympics but I really knew nothing about him. I found a bit more information last night but my work ended after reading a CTV article. Now CTV is a respected Canadian television network. They discussed the trials and tribulations of this young man...not only is he obviously a little off his rocker for choosing a sport that requires him to ski for FIFTY KILOMETERS (I can't do 50 meters!) but he is doing it after numerous sports related injuries and surgeries as well as living with Type 1 diabetes. He is truly amazing but the best, best, best part of the article for me was when they discussed life before his insulin pump. You see in those days he was required to take up to 10 HITS of insulin a day!! I have heard it called a lot of things but even for me, "hits" of insulin takes me directly to the drug world and I have to laugh.

I honestly don't care if they want to call it hits of insulin. I don't care if people think I am crazy when I ask if my kid is high and I am not talking about drugs. These are things that we live with and maybe using these words that have become so popular in reference to other things will just make this disease a bit more memorable for people and make the ask more questions.

Off to check and see how many "hits" my son took today....

Cure Funds

Recently JDRF announced that it was giving money for a Johnson and Johnson artificial pancreas research project. The other day I also noticed that they were involved in another research project with BD. I will readily admit that I have had very little to do with the JDRF since my son's diagnosis. They are virtually non-existent in my area. I subscribe to some of their initiatives and occasionally follow some of what is being done but I am not involved with them regarding any fundraising or support.

The people that I have seen supporting them however have been very diligent. Families who create walk teams seem to go to great lengths to fundraise and let everyone know that they are "Walking for a Cure". I therefore began to wonder how these same people felt about their "cure" money going towards diabetes tools research. Don't get me wrong, tools are what keep my son alive. The great advances in tools are vital to me until that day comes when he or others living with type 1 diabetes can be cured. I spend a lot of time advocating to get these tools in the hands of all people living with diabetes so I am definitely in support of this sort of research. My question however, was for those who had "walked for a cure" and now saw their dollars going towards treatment.

Organizations like the Diabetes Associations openly state that money raised for them goes into a variety of pots including research and development. The JDRF website states that its "mission is to find a cure for diabetes and its complications through the support of research. " For many that sort of a statement would suggest that a cure is its only focus. People that I have spoken with have been rather taken aback by these announcements. Some feel very betrayed while others are shocked but accepting. Many living with diabetes feel that they can still support this and feel that it is okay for them to spread their focus to living with diabetes and well as working towards a cure. Still others are sitting back scratching their heads. These people are not so sure that this is where they want their money and efforts to go any longer. Sadly there are many other organizations that would gladly accept their support.

I have no idea if this public support for techonologically based research will cost the JDRF any support or not. I am happy to see any advances that will keep my child alive, healthy and happy until that day when someone does finally discover that cure.