You want me to do WHAT?

I have some personal issues to attend to this weekend so I told my son that I will need his help.  He will have to do his own night testing on Friday and possibly Saturday nights. He looked at me like I was insane.

"You want me to do what????"

I told him that because of things going on over the weekend, I was not sure that I would be able to test him Friday night and possibly even on Saturday. It would really help me out if he would set his alarm and take over the testing for those nights.

I continued to get the "deer in the headlights" look. I reminded him that when he goes to his father's he does his own testing...and he lives.  I reminded him that I NEVER ask him to do his own testing. For almost 12 years I have gotten up throughout the night to check on him.  I was just asking for a small bit of help in a special situation. He begrudgingly agreed.

I wondered what will happen when he is older. My son does not wake for lows. He only wakes to highs that have reached a point of ketones or dramatically increased urine output.  In other words, he sleeps through 99% of his out of range readings overnight.

In speaking to a health care professional recently, he suggested that my son should already be doing his own night testing. I thought he was insane. My son is only 14. He needs his sleep. I have had broken rest for more years than my son has been alive. Its just part of my life now.

I know that not everyone does night time testing. I do. I always have. Its part of our diabetes care. One day my son will make his own choice about testing but until he is of age, Mom will make that decision.  This means that I will test him at night. I will ask him to test when life will not allow me to do it and before he leaves my home (in another three or more years), I will work to get him testing on his own at night.  Until then, well we will muddle through.  

A "Diabetes Day"

Out of nowhere, my son turned to me and said "Mom, I think its about time I took a Diabetes Day."

I had no clue as to what he was talking about. Diabetes is an every day kind of thing. Why do you need a special day dedicated to it?

"No.  A Diabetes Day.  You know like Joe said?"

Ah, a poor pitiful me day! A diabetes sucks and my life is horrible day! I remembered!

"Are you going to run over a meter?"  I don't know why but I have issues with killing an innocent meter even if its for the betterment of my son's mental health. It just seems weird.

"I might."

Great!  "You realize that you can't play video games all day.  You have to lay in bed, watch movies and feel sorry for yourself?"

"I can do that" he tells me.

"Its nothing but ice cream all day and don't forget to have your friends call and tell you how wonderful you are."

"I have to have friends call me?"

"Yeah, remember? You are supposed to have them call you every hour at least and tell you how special you are.  How tough it must be for you.  How amazing you are to go through this diabetes routine every day. They are supposed to pile on the compliments and the pity like there is no tomorrow."

"Oh yeah, I forgot.  Maybe I'll hold off on that Diabetes Day thing for a little bit more."

I simply shrugged and told him it was up to him.  Inside I was letting out a sigh of relief that a meter would live for another day.

When he is ready for a Diabetes Day, I guess I will have to see what I can do to make it happen for him.  In the meantime, we will just stick with Mom doing some of his care when he is tired of it. That seems to be working for us at the moment.

The strange language of Diabetes

"You had better be high, Mister!" has been said to my teenage son more than once while in a public venue. People have looked at my like I was the world's worst parent.  Who in their right mind suggests that its a good thing for their child to be high?

"That will be twenty, plus, thirty, and five, plus another twenty-two. Did you get that? Do you have the total?"  said at the dinner table with onlookers wondering why I am about to "charge" my son for his meal.

"Are you using a temporary basal? Do you think it would be a good idea? Were you really active?"  receives a strange look from friends and questions as to what in the world we are talking about.

"Did you fill my cannula?"  results in "What's a cannula?"

DRI does not refer to the thrash band Dirty Rotten Imbeciles.
CDA is not just the Canadian Dental Association and when we speak of the CWD, we are not referring to Chronic Wasting Disease.

An insulin pump is not a cure, a pager or a cell phone. It is a medical device.  Glucagon is not used when someone needs more insulin.  Type 1 diabetes is not the "bad kind" its the kind that happens when your pancreas no longer works. No, his pancreas will not decide to work again at a later date. It gave its final notice almost 12 years ago and will not be returning to work until such time as it is forced to do so by a "cure".

Bolus, basal, cannula, carbohydrates--they are all words that we use every day. Bolus should not be "blouse" no matter what spell check believes.  Basal is not basil.  A cannula really is a small tube that is inserted into the body...no not  surgerically but by a small needle that my son inserts and removes himself on a regular basis. Carbohydrates are a measure of food energy not just something of concern for those on Atkins.

The world of diabetes brings you into a world of new words. It takes commonly used words and changes them in a way that causes us to get strange looks from average people.  We try to educate them.  We try to help them to understand our language. Some try to get it, others just give us that blank look and we know that nothing has sunk in. Despite that, we go on knowing that we will continue to use these common words in our strange way until a cure for Type 1 diabetes is found.

My son is Channeling Dr Seuss

Yesterday we went  to our regular diabetes clinic. I love my son's new endo.  She is young and interesting.  Mainly though, our trips seem to be give blood for our 3 month diabetes report card--also known as his A1c.  

This time around the endo asked my son how he thought his diabetes had been on a scale of 1-10. He gave it an 8.  When she left I said "an 8?"
"Yeah, I would have said 7.5 but I thought I would bump it up to an 8." 

I laughed and said that diabetes had been rather miserable for most of the summer. I also said that his testing was a little less than an eight as well. He just shrugged his shoulders and grinned. 

As we drove home, we discussed the long wait time. It took over two hours to speak to the endo and then have the nurse draw the blood for his A1c.  He said that the results of his next A1c should be even better than the last one.  I was pretty shocked by that one. His last results were pretty awesome considering we are still living in the middle of puberty's hormonal nightmare as well as the teen age desire for greater independence and automony. I reminded him of the bad sites and highs he had experienced over the summer.  I also noted that when he was away on his own, he was not always stellar about his care

With that, he quickly became Dr. Seuss and told me how wrong I was.

"Me? I always test! In fact, when Dad would say, Who made that mess? Well I would look around and say, Test? Test! Of course, I will go and test!

If Dad said, Son, you are being a pest!  I would immediately respond, Test? Test! Of course, I must test!"

My sides hurt. I shook my head. I some days wonder where he came from.  I will remain less optimistic about his upcoming A1c but will definitely start using a few more words like mess and see if it still prompts him to "test"!

Hi Ho, Hi Ho, its off to the polls we go!

Fall is in the air, and here in Canada this means a large number of provinces are heading to the polls to elect new leaders. My province is no different.  In October we will look towards a new government to steer us forward over the next four years.

I am not that psyched up about this election. I am quite sure that the governing party will again win a majority. Nothing much will change. Nonetheless, I was thinking about the issue that many people living with diabetes will bring to their provincial representatives--provincial coverage of insulin pump therapy.  It is still a huge issue and far too many provinces are not covering pumps.  Even for the few that do offer coverage, the provinces seem to think that at the magic age of 18 (or 25 in Newfoundland and Labrador) that people with diabetes will suddenly be blessed with ideal private insurance coverage or exceptionally lucrative jobs and no longer need to have provincial assistance.

Knowing this, I shook my head when I read an article today from the European Association for the Study of Diabetes.  It confirmed the value of CGM for Type 1 Diabetes in significantly reducing the HbA1c in people who used real time systems. This means that a CGM is a valuable tool in maintaining and even improving the health of my son and others living with Type 1 Diabetes. 

The problem with this is that we struggle to get our provincial health departments to cover insulin pump therapy.  We tell them the huge financial benefits in the form of decreased hospitalization and improved control but still they are reluctant to cover this device.  How do we now convince them that pumps AND CGM really do save and improves lives for people with diabetes?  How do we make this an election issue? How do we remind them the value of a  human life? How do we make them understand that money spent on this complete system will save them huge amounts in terms of reduced complications.  Reduced complications means reduced stress on the health care system in terms of cost of dealing with such costly things as cardiac events and kidney disease.

How do we get them to understand that the cost of an insulin pump, CGM, and supplies for one person will be returned to them and then some in the taxes that these individuals will pay each year.  These are not the dead beats of society.  People with diabetes, like many others, strive to be productive, taxpaying members of society.  It is much easier for them to do this when they are able to better manage their diabetes and therefore their health by using a insulin pump and CGM.

The way to convince them is to educate them. We must bring these issues up to our candidates.  We pressure them to follow through on improving the lives of people with diabetes when they are elected.  We work to garner the support of the next Health Ministers.  We make sure that the future Finance Ministers of our provinces understand the financial benefits of insulin pump therapy combined with CGM, not just for our young children but for all of our loved ones living with Type 1 Diabetes.

1000 Words

They say that a picture is worth a thousand words. 


I was going through old pictures today and came across this one of my son taken over eight years ago.  Seeing the expression on his face broke my heart. There are no other words....

Slack or Strict? That is the question.

School has started and we are back to the same old routine.

"Did you test?"
Of course.
"Did you test two hours after your breakfast?"
I tested at 11am. Isn't that the same?
"You ate breakfast at 7. No its not the same. Did you test before gym class?"
I tested at 11.

THUD! The sound of my frustrated brain smacking against another wall. My son is 14.  He is very, very private about his diabetes.  He would be just as happy if no one had a clue that he had diabetes. Mom is not this way. Mom would like everyone around him to know and understand diabetes so that he is safe at all times.  I want teachers to know that he is not drunk, lazy or stupid when he looks dazed and weak. I want them to run for glucose and ask questions later. I want people to understand that the six trips to the bathroom during Religion class was not because he really doesn't like the class but because he was high. I want them to understand that he is not wearing a pager, he is tethered to a piece of medical equipment that keeps him alive.

How much do I push him? His school knows that he has diabetes. I have spoken to most of his teachers over the course of the previous school year.  I asked the principal to meet with them all again. She said they had a nurse come in before school started so there was no need but she would speak to his homeroom teacher about meeting with the teachers he specifically has. I have not heard from the teacher so yesterday I sent them all a detail letter about Liam's care.  Personally, while the meeting with a nurse is wonderful, the individual needs and care of each student should be further addressed by having the parents of all children with diabetes attend this meeting. Because this did not happen, I went with the letter and hope to see a few of these people at the curriculum night.

Again, how much do I push things? The school will no longer set alarms for him to test. They want him to be self-sufficient and he is in grade 9. I am okay with this...in theory.  I have thought of returning to our three strikes and your online privileges are gone routine but did it get me anywhere last year? Sometimes but it was not completely effective...he is still slipping into old habits this year despite the threat.

The slack part of me says, you know what? My son is really good at knowing when he is high or low.  He will most likely "know" when he is in trouble.  The rest of the readings just allow me to keep a respectable A1c level for him.

The diligent parent in me says, "Punish him! He will one day learn. He has to do this. Its the same as brushing his teeth."

The slacker response is that at some point I have to respect his desire for privacy.  I have to give him the space to be himself rather than just the boy with diabetes, as long as it does not endanger him.  This could mean allowing him to test as he feels he needs to.  

Testing at 11 instead of 9:30am is so far not harming him. Its driving me insane but he is still alive to tell the story.  I can continue to nag. I can hope that one day he will hear. I will work on breathing and not freaking out.  I will look at alternatives to the three strikes...probably...maybe...well I will try.  

Faces of Heroes

Recently Reyna of Beta Buddies posted a great article on her life as a pancreas. I was worn out just reading it and then realized that it mimicked a lot of what our life has been for more years than I can remember. I began to think that maybe I should try that, to write out a description of my life. I still might but not today.

In viewing what her family does each day, I also realized something about my own attitude towards diabetes care. It has always been a "suck it up, Buttercup" kind of thing.  When I inject a site and he complains, I will tell my son that it wasn't that bad--not that I have ever injected myself with an infusion set but, get over it kid! When I ask him to lance his finger again to give me more information, I don't think, Dang that's gotta hurt. I just think, its more information for me to keep him healthy. 

I am not really so cruel that I don't care about his pain.  I have to depersonalize it so that it doesn't overwhelm me. Since that fateful day in March of 2000, I swore to do whatever it took to keep my son alive.  His life was a gift and I would work hard to protect it. Poking and prodding him at all hours of the day seemed to be a far better option than what I had seen on March 17th. There was no going back if I could help it.

One of the first Canadian pilots with Type 1 diabetes

With all of this swirling through my head, I began to further think of the people who will say that their children are their heroes. Not just the children living with diabetes, but also the siblings that support them. I have been slowly working on a new look for my website.  I am changing pages, making things fresh and looking at adding new sections. Years ago I created a campaign called "Faces of Diabetes".  It was printed and bound and then presented to politicians to show them the real "faces of diabetes".  These were everyday people and their stories.  Some made me cry and some gave me hope but the common theme was that they were all working hard to make the most of their lives with diabetes.

Cameron has lived with diabetes for most of her life

I then began to think that maybe the Faces of Diabetes should also have a new section--Diabetes Heroes. I decided to see if this had already been done.  A quick Google search led me to an AccuChek site that showcased Oskar Minkowski and Elliot Joslin.  This was not what I was looking for. They were dead and I was looking for real people who have been heroes in their own right. I was looking for the sister who has raised money for diabetes awareness because her younger sister lives with the disease.  The little boy who bravely injects himself with insulin so that Mom and Dad can go out on a date night. To me, those are the heroes to be recognized.


So here is my challenge to you...send me those stories (and ask your friends to do the same)! Provide a picture, when they were diagnosed and of course why you think that they are heroes.  I will then provide the page to showcase them. If you want to add yourself but don't feel that "hero" works for you, please help me add to the Faces of Diabetes page.  Those people are still heroes whether they realize it or not.

You want me to test how many times?!?

I took my son to the orthodontist first thing this morning. It had been a weekend of amazing diabetes readings and all was good with the world.

As we were returning to his school, I asked him if he knew what class he was supposed to be in at the moment.  He didn't but he did remember that he had sports during lunch. Since he has only had his class schedule for a few days I was not surprised that he didn't know where he was supposed to be. Since there would be sports though, I reminded him that he needed to test before and after the activity.

We did a quick recap of some of his classes and I noted that his gym classes occurred first period basically once a week. I then reminded him that he needed to test before and after gym class as well.

He looked at me with both shock and disgust. "You expect me to do nothing but test all day? How much do I really need to test?"

I wanted to laugh or slap some common sense into him but instead I just shook my head. "You test two hours after your meals, before you eat and before and after strenuous activity." 

"Yeah but now you want me to test an extra few hundred times."

"Nope.  We just said that gym is first thing in the morning. You have to test before gym which also happens to be about two hours after you have eaten your breakfast. No extra test required.  You have to test after gym. One spare test per week. As for lunchtime activities, you test before you eat...probably before the activity.  You test after the activity...again ONE extra test."

He grumbled and agreed but I knew that he still felt he was being abused.  He was being asked to lance himself unnecessarily and interfere with his school day. Sorry, but that is what keeps him safe and allows me information to keep him healthy.  More joys of teens, diabetes and trying to have a normal life!   

Bang!

School is back in full swing and Diabetes continues to annoy.  The other night, as I was getting ready to head to bed, I thought back over the past few months.  June was a low month. I could do nothing to get any control or a break from treating and dealing with lows.  July was in range. I received some respite and a chance to breathe for a minute.  August was high. There was no controlling the beast. No matter what we did, Diabetes messed with us through failed sites and just being Diabetes. 

Obviously I was not thinking well that night because I figured that based on this pattern I should see good readings in September and then lows in October.  Where was the logic there? I seemed to have been a bit delusional in my hopes of enjoying a Diabetes reprieve.  Reality was that night, my son had his first stubborn low...well since June! Can we say that I was sooooo not prepared?

I was exhausted. I was a mess. I woke up at 3 and was up for an hour trying to get him into a "mom can now sleep" range.  The next morning was school so there was no extra rest.  We also had appointments to deal with so I really was going to get no break.

The result? Bang! I was a wreck.  I managed to string words together. I managed emails to the schools that my children attend to address issues that have already arisen.  I refused to get too involved in any of these problems and prayed no one replied to me for a day. I was feeling testy and defensive. I didn't want to mess with anything.  By 6pm I could gladly have gone to bed.  I stayed up.  We watched TV and went for our evening walk. I was dying.

It was finally bedtime. I had changed my son's rates and prayed for a better night. He was high. I love this Diabetes roller coaster...NOT!

Back to School is changing

Today is the first day back to school for my boys.  One is starting his last year of school and my youngest is entering grade 9.  Where did the time go? It seems like just yesterday I was sending my oldest to preschool and now I am looking into university costs.

There are some good things about time moving forward though.  This year I do not have the stress that I had last year.  I spent the end of last year getting my oldest son's classes in order. This fall my son with diabetes is a year older, has most of the same teachers and the same principal.  The school now has two children with diabetes and hopefully much more awareness than they did one year ago.  

I will still be in touch with the school. I will offer a refresher course for those who heard me last year and education for those who might be new.  My son has his phone and alarms put back on his pump.  I will hope that a new year will mean a new adherence to those alarms and more information for Mom (but I am not holding my breath!) 

Its not just in our own world that we are seeing changes. I used to dread this time of the year because of the many phone calls and emails that I would receive.  Families were struggling to get the support that they required for their children with diabetes in schools.  Mothers would call me in tears, frustrated by the lack of support. Today there are many more boards who have policies regarding the care of children with diabetes in their schools.  There are more provinces that are looking out for our children. There are more parents standing up and asking for schools to "get it" and more schools are!

Each year I speak about sending your children to school with diabetes.  Each year I prepare educators and parents.  As time as gone on, I am pleased to see that things are changing.  Parents are sending their children back to school with comprehensive diabetes care plans and the knowledge that they will be adhered to.  Educators are offering aids and assistance where they can. The transitions are smoother than they once were.

This has been a long road.  We still have many miles to travel to protect all children with diabetes in schools.  As someone who has been on this road for ten years now, believe me when I say that we have come a long way.  We have made changes and together, we will work to make many more.

Diabetes Goes Camping

For the Labour Day long weekend, we decided to pack up the new travel trailer and try our hand at camping.  Larry has sold the cabin and decided to see if he liked camping. This was our first trip out so I knew that there would be glitches.  Getting used to dry camping, making sure we had enough dishes, and remembering everyone's toothbrushes were just a few of the challenges we faced. 

We knew that Diabetes would be coming along so my son packed a number of supplies that he knew that he could keep in the trailer.  He also packed the supplies that he would need for the two nights we would be gone.

We had insulin, test strips, two infusion sites, batteries, meters, glucose tablets, and more.  We were pretty well set.

In keeping with the summer, Diabetes made its presence known quickly.  Our first evening was quiet.  We drove forever to find a spot and then fought the mosquitoes for the right to stay there.  We eventually won and settle in to enjoy our first night in our "home away from home". 

After a movie and a game of cards, we hit the hay.  Two hours later I awoke to my son getting up.  This was not good.  He had changed his site before bed and my gut said it was bad already.  He tested.  He was high.  He swore that the site was working. I didn't think so and gave him a correction via syringe.  He went back to bed only to get up again. He was still high but coming down slightly because of the injection.  I made him change the site. 

We now were down to one infusion set.  Why didn't I pack four?? One a day might not be enough.  Why didn't I think of this? I had spare insulin and tape to hold a site in place but that only worked with a good site.

Because he was still high, I had him correct again. I then became paranoid.  Yes he would be insulin resistant because he was high but what if I over corrected? What if I killed him in an effort to save him? Did I get too aggressive? I went to bed with fears running rampant through my mind...remember that I am the worrier! 

Two hours later I got up again and checked on him. He was not on death's door.  He had not gone low. He had not even come into range yet but he was headed there. The site was working.  Back to sleep I went for an hour or so.

The next day was filled with exploring and enjoying company.  We had a family barbecue and the evening ended with full bellies and another movie.  I held my breath as I waited for what Diabetes would bring this night. Would he be high again? 

No, he was a little low.  I fed him glucose tablets but we did not have a straw.  He had requested that if I treated a low with tablets that I at least make him drink water afterwards to get rid of the taste in his teeth and braces.  We have called this his "glucose hangover" and much like a regular hangover, he is not fussy about the experience.  Unfortunately with no straw, I could not get him to drink without waking him.  Sleep won over and I apologized in the morning.

All in all we were relatively well prepared for our first camping experience.  The boys seemed to have fun.  We have a new list of things to add to the trailer and will work on the pack up and returning home routine.  I am hoping however, that Diabetes learns to be a bit more behaved on outings if it must continue to come along.

Fourteen

Fourteen. FOURTEEN.  Where did the time go? Fourteen years ago I was wondering when my child would arrive. He was taking his time...a forecast of a personality yet to emerge.  Things were done on his own time and birthing was no different.  Like his personality however, when he decided it was time, it was done.  No dilly dallying for him. The evening of September 5, 1997 he arrived to greet the world and change our lives forever.

As I said, he has lived the past 14 years on his time. He learns at his pace and when he decides to implement something, it happens.  When he decided to test, it was done...okay Mom got him to do it by saying she was really busy and could he please help by testing but he continued on his own after that.
When it was time to do his own infusion site changes, he waited until the last moment and then has never looked back. When it came time to taking charge of his own care...well he still stumbles but he still continues to make major leaps when I am at the end of my rope.
Today my baby boy turns fourteen. He is becoming a young man.  He will soon be taller than both of his parents and is giving his older brother a run for his money in the height department as well. His voice is changing.  His body has developed.  Girls quietly catch his eye more than they once did.  Puberty has given us a run for our money where diabetes is concerned but we have managed so far with minimal bruising.

I don't know where the time has gone.  We have come so far...he has come so far.  He is a wonderful young man. I have been blessed with terrific sons.  Today we will celebrate with gifts, and CAKE!! Gone are the days of angel food cake and whipped cream.  He has lived more birthdays with diabetes than without (12 to 2).  Diabetes has never defined him.  To him its a burden that he quietly bears but rarely allows it to get in the way of living his life.

We will have a black forest cake with all of that chocolate, cherries and cream as per his request.  The carb counts will be off but we will celebrate another year of living! Diabetes will take a back seat.  I will quietly look back on how much my baby has grown.  I will remember how much his body has been through and be amazed at how well we have done.  I swore to hand him a healthy body when he came of age and so far I am doing my darnedest to do just that.

Happy birthday 14 year old!!!

Educating while Vacationing

Our trip to the US had an unexpected twist...educating at almost every stop.  As I have mentioned, Diabetes kicked our butt on many days.  Between carb counting errors, long days driving, and site failures, highs were around more than they were gone. This meant having to explain to people why my son was heading asking to use their washroom before he said hello and why he was drinking a gallon of water while trying to say hello.

Larry would explain to people that my son had Type 1 diabetes and was running high.  They would then ask if he was adhering to his diet and assumed at his age he wasn't.  We would patiently explain that he did not have the strict diet that perhaps someone with Type 2 might have.  He eats in a very healthy manner but is allowed and enjoys certain treats now and then.  We would expand on the fact that as long as he matched insulin to what he ate, he was unrestricted in what went into his mouth.

Getting them to understand that the highs were not "his fault" and he was not a "bad diabetic"  was a challenge.  I quickly realized how society has been groomed to "blame the victim" especially in the case of diabetes.  They see it as a disease where the patient is the problem.  "If they didn't eat this then they would not be sick." "If they exercised more then they would not be in this state."
 
It was rather disturbing but I hope that we did a good job educating the people that we did come in contact with.  I hope that they will stop before they blame the victim and realize that in many cases there is no blame.  Most of my son's serious highs were because of failures in the tools we were using.  In our case, sites that kinked two minutes after they were inserted. This could not have been avoided...well it was when we quit using stomach sites but we could not know that at the time.  

We also, thankfully, came across people that knew exactly what we were dealing with.  They grasped the challenges despite not living with the disease first hand and were very understanding.


I once looked upon every interaction as a teaching tool. I have been very open about my son's disease and work hard at dispelling myths.  My son, as I have said, is very private.  He does not like people to know about this disease and shys away from questions. This trip, I did not want to educated. I was frustrated that Diabetes would not give us a small break. I did not want to deal with educating the misinformed but that is not the way life goes.  Hopefully we gave people something to think about and a little more information than they had before we stumbled across their paths.

Diabetes Art Day

Today is Diabetes Art Day.  I was going to come up with something amazingly creative. I would use the many test strips and dead infusion sites that find their way into every nook and cranny of the house. I would use color and tap into artistic genius that I never knew that I had. It would be incredible!  After I woke up from this lovely fantasy, I remembered that my son had been that creative!

So this is his "Diabetes Art Day" submission...