Are you alive?

I woke up at 1:30am in a panic. I had had one of those dreams that you are being chased and was still a little freaked as I tried to get my bearings. One of my rules is that if I wake up for no reason I need to test my son.  He had probably only gone to bed just before I woke. Did I really need to test him? Well, a rule is a rule and it has served me well all of these years....

Off to his room I went. As I fumbled around with the meter he woke and stared at me.  "What are you doing?"

"Testing you."

"I just did that."

"How long ago?"

"Around 12:30 or so"

"Well I am doing it again. Its your fault for waking me up. I had a nightmare. We were being chased so now I am awake to test you."

I could see him silently thinking that I was nuts but whatever worked for me. He rolled over and the meter said that he was fine.

Two hours later I woke again. I got up and headed to his room.  He had been in that absolutely perfect range that makes me nervous so I wanted to see where he was then.

I fumbled with meters and made a mess of things. My son again woke up.

"What are you doing? You just tested me five minutes ago!"

"Actually it was two hours ago and I was just checking to make sure that you were alive."

"Oh. Was I low?"

After the words left my mouth and I heard his response, I wanted to cry. It was an innocent phrase that I would say to anyone.  I  simply meant that I wanted to check to see that he was okay.  In his reality, the statement was to be taken literally.  He was matter of fact in asking about his readings. I was so sad to think that this is our lives...fear of lows and the reality of death every time his eyes are closed.

Once again wishing for a cure to take away fears that should not be.

My Christmas Wishes

My son was charged with the daunting task of purchasing gifts for me from him and his older brother. He hates to shop. He thinks life would be much simpler if he could just buy me tools.  He thinks that I am the hardest person in the world to buy for...he might be right! He asked for my list and I found it really difficult to come up with things. My mother asked me the same question and the list was shorter.  When Larry asked, I drew a blank. 


Yes, jewelry is always the right size and the iPhone would be nice but I will get that later. The Kindle? One day.  The new printer since mine died this week? Yeah, but it can wait...Larry's printer works and lately I only print Little Einstein coloring pictures.  The candles, clothes, and books are all lovely.  That special gift of a picture or something that says I was thought of is wonderful but the more I truly thought of what I really and truly want, the farther I moved from the material world.  You see all of those material things are nice but I don't need them.
Larry had it right when he said to the same question, that he only wanted his family to be happy.  He wanted his children and his grandchildren to be at peace with themselves and enjoying a worry-free life.  I agreed completely. His answer  did not help me to come up with a great Christmas gift for him, but it did keep me thinking.  What were my Christmas wishes?

My answers were actually quite simple. I wanted my grandmother back for one. She has Alzheimer's and lives far away. My only contact with her for the most part is via the telephone.  A recent conversation had left me heartbroke when I was sure that she didn't know who I was and most likely didn't even know who she was. I wanted her back in all her quirkiness. She loved us all unconditionally and I missed her terribly.

My next wish was to know that my uncle was safe.  He has been missing since September.  His children don't know where he is and no one else does either. We don't know if he is healthy or sick.  We just don't know what has happened to him or where he could be. He has missed his birthday and that of his oldest child. I keep praying that we will find him for Christmas.
Diabetes also falls on my wish list.  Yes, a cure would be ideal. Its something I will focus on more and more but until then, I wish that my child and everyone else's child had the access to the pumps, CGMs, insulin and test strips that they need to keep themselves alive regardless of income, insurance or location.  I hate to hear of people struggling just to keep themselves healthy. I hate worrying about the future health and safety of my son.

So what do I wish for Christmas? Peace. Happiness. Lots of love...but then again I have been blessed with that. Love of family. Love of friends. Love of friends who have become family throughout the years. My grandmother had a good day when I spoke to her yesterday, so I have received one truly touching gift already in her parting words of "I love you". My uncle, I will continue to pray for.  Funding for diabetes supplies? I will continue to lobby for.

I am truly blessed in so many ways and I thank you for being a part of that blessing. To all of you-- Happy Hanukkah, Merry Christmas from my family to yours!

Life before diabetes?

I recently read posts from people who wanted their lives back. The ones that they had before diabetes entered the picture.  They wanted to go back to their old "normal". These comments gave me pause because I can no longer remember much of that life or imagine how it would be now.

Diabetes has lived in our house since March of 2000.  The number of times my son's blood has been tested and his fingers lanced is far too many to try to figure out.  The number of times he has had needles stuck in his body to receive insulin, have blood work done or insert infusion sets again is beyond me.  I just know its a lot but I just don't have the energy anymore to calculate the number.

When we began this journey, my son was just a toddler. He played, laughed and did his best to keep up with his big brother.  Today my son is a teenage boy.  He laughs. He does his best not to run unless he is involved in a serious game of hockey with friends. He goes to movies and looks forward to the times that he gets to spend with his big brother.

Because I have two boys, both of whom are now teenagers, I know that diabetes has created some very real differences in their lives. I worry about drugs, alcohol, driving and girls.  I worry about their education and what they will do with their lives. Before diabetes...well I still worried and wondered what sort of young men they would become.
Diabetes has added another level of worry when thinking about my youngest son of course. I worry about his level of care--will he ever learn? Will he ever wake from a low? Will he remember to test? Will he change an infusion set on time? Will he be able to afford his supplies? How will he handle girls and diabetes? Will he be careful if he decides to drink? Will he test before he drives?

Before diabetes, I never truly realized what our health care system did and did not cover. I did not understand the cost of staying alive and healthy when living with a chronic disease. I don't think I that I would want to go back to that level of ignorance. It has given me a new respect for many people--not just those living with diabetes.

Life before diabetes was different but it was a very long time ago. It remains a distant memory.  Since diabetes, we have changed and grown.  We have seen our character become ever stronger.  I have a few more wrinkles than I might otherwise have had. I live off of a lot less sleep than I imagined possible but I have read more books...waiting for a 3 am low to come up gives you time for things like reading.
Our lives are different now than they might have been but its not all bad.  I have made amazing friends. I have met incredible people.  We have experienced things that we might not otherwise have done.

I would still give anything to see a cure. I would still do anything to take this disease away from my son.  I still wish that there was a magic wand I could wave to make this disappear for everyone's children--young and old. Its not a life I would wish on anyone, but its the life we were handed and we do our very best to live it to the fullest.

Our Review of the Contour USB

At the pharmacy a few weeks ago, the woman behind the counter asked me if I had tried the Bayer Contour USB meter? We hadn't. I wanted to ages ago but they were never free so we didn't bother with it. She suggested that my son might be interested and to talk to him about it before we ordered our next stock of strips.

I took some information home for him to look at. It seemed strange to think of him as making the decision regarding his diabetes tools but he is growing up and has to like the tools he uses.  Not surprisingly, when I asked if he wanted to try a new "toy" he jumped at the idea.  We have been meter collectors for a number of years and are always searching for just the right one. His meter of choice has been the One Touch mini and he is eager to try out the new Verio but for the moment he was set to try the Contour USB.

Eventually I remembered to ask for the free meter when ordering our strips.  I brought the Contour USB home to him.  I never opened the box. I didn't read the instructions. I just passed in onto him. He took the box to his room and emerged hours later.

"Well?"

"It looks pretty cool!"

A few days later, I took the meter to review the data. He was still using his One Touch at school but was playing with the Contour when he was home. I could not figure out how to turn the thing on let alone find the auto log.  My son, on the other hand, could easily get it to work and find whatever data he wanted.  I decided that I would try to see what was happening on the computer instead.

This weekend, I finally took the opportunity to try to use the meter myself.  It turns out that it is a lot easier to put in a strip and get it to work than it was for me to search its history!  This meter was easy, light weight and had great back lighting.  I was pretty impressed. As it was calculating, it asked me if I wanted it to note that is was "before a meal", "after a meal" or "just a random test".  It did not leave the screen until I made a choice but as I was deciding, it had already figured out his reading! It so neat! The reading was large and bright--perfect for a woman who rarely wears her glasses at 3am when testing.  The best part was that once I had seen the reading, I pulled out the test strip and it shut down!! No buttons to hold. Nothing! Just power down. 

I asked my son what he thought of the meter? He again said that he really likes it. I still find the strip container a little bulky and the strips are large despite the small amount of blood you use.  Despite that fact, so far it seems to be a pretty neat device! We will be downloading later today to see about getting the "full effect". 

Its scary how little diabetes gadgets can add so much to our days!

Recipe for Humalog...not the insulin

After posting about the "Humalog" that I had hidden away from my son in the deep freeze, I was asked to post the recipe and carb count. Upon further investigation...well I have no clue as to how he counts the carbs in this! I believe we used to use a fudge carb factor.  In any case, I have figured out the carb count for the entire recipe.  Sorry, you will have to weigh the logs yourself to get a carb factor or divide by general piece size for a general carb value per piece because as yesterday's post indicated, the logs in our house are disappearing very quickly and can no longer be accurately weighed.

So from our house to yours, Happy Holidays! and enjoy some "Humalog" with your Christmas dinner!

Chocolate Yule Log...AKA Humalog

1c icing sugar
8 oz colored miniature marshmallows
1/2c coconut
5 squares of semi sweet chocolate
1 egg
5 tbsp margarine.

• Mix icing sugar, marshmallows and coconut in a large bowl.  Set aside.
• In a double boiler, melt chocolate and margarine. 
• Add egg to chocolate mixture and stir until thick.
• Pour chocolate mixture over the marshmallow mixture.  Mix well.
• Cut two long pieces of aluminum foil and sprinkle foil with extra coconut.
• Divide chocolate mixture in two. 
• Form two logs--one on each piece of foil.  Roll in the coconut or sprinkle on top after the logs are formed.
• Roll up in the aluminum foil to hold the log shape and chill in refrigerator or freezer. Slice to serve.

498g of carbohydrates for recipe.  249g per log.

*walnuts can also be added to the marshmallow mixture

Humalog...a Christmas Treat?

"Mom, why do you keep the Humalog in the freezer?"

What? Humalog? We haven't used Humalog in years.  "I keep your insulin in the fridge so that it lasts longer."

"No! Not the insulin. The Humalog"

"Do you mean the Yule log that I keep in the freezer so you won't eat it all before Christmas?"

"Yeah! The Humalog! Its a real pain trying to cut it when its frozen."

Oh my!

Nova Scotia Government is Scrooge for those with Diabetes

After the announcement earlier this month  by the Saskatchewan government that they would be expanding their coverage of diabetes devices and supplies, Nova Scotia has sadly announced this week that they will not cover insulin pumps for residents of any age. I have to admit that I remain very shocked and disappointed by this announcement.

I have met a number of people who have worked hard in Nova Scotia for a lot of years to see improved access to devices and supplies in that province. I am surprised that their efforts continue to go for not.

When Nova Scotia elected an NDP government, I thought that a pump program would be guaranteed.  My knowledge of politics is minimal. I have no political affiliation or loyalty. I vote for you if I like you and think that you are actually doing your job.  Its that simple for me.  I also have a very limited idea of the basic principals behind of most political parties.  In Grade 10 social studies I was taught that the Liberals are "liberal" and believe in social programming.  The Conservatives are not as interested in social spending and believe you should make it on your own merit.  The NDP are far right and thus believe even more in social responsibility that the liberals.  That was how I saw it. 

It was because of this view that I felt that an NDP government in Nova Scotia would ensure improved health care.  They were about social responsibility right? They believed in helping those less fortunate or those who cannot afford the best medical treatment, weren't they? I guess not.

This scare me.  I am not concerned with the fact that my general view of  political parties is obviously off but I am concerned with a government that has just said NO.  If our socialized health care is not a priority for a social party what hope do we have? If they will not help out those who cannot afford to avail of the latest technological advances and best medicines, then what will happen when devices like the Artificial Pancreas are developed? We will be living in a very two tiered system. Perhaps we already are. Those who can afford to quality care for themselves or their loves ones will get it. Those who can't don't and won't. That is disturbing.

What happens in those families with more than one person with diabetes? How do they cope without government help? How do they keep themselves healthy? I have already seen families where Mom does not test as often so that her son can have more test strips. I have seen families where a parent has to decide which child will get an insulin pump and which child will have to stay on shots because she/he cannot afford to pay for it for both. 

During the holiday season, we think of spending money on gifts. Can we afford to buy our child the latest xBox game? Have we bought them a new laptop or tablet to put under the tree? Should we buy our loved one a new iPhone? The list goes on but for many living with diabetes, one xBox game is equal to a box of 100 test strips.  A tablet would cover a month's worth of pump supplies.  An iPhone may be the same price as a CGM. 

This is not the way our country is supposed to be.  This is not how Canadians should live.  This needs to be fixed.  We need governments that care.  No to medical devices and supplies is just not acceptable. We must say yes to compassion, yes to improved health, and yes to looking after those who cannot look after themselves. Access to medical devises and supplies should be a given not a budgetary issue.  Things must change.

One out of two is a start!

Saturday night I woke up to test my son. He was a little high so I made a correction and went back to bed.  A few hours later I woke up and he was still high.  Again, he wasn't "really" high but his bg levels had not dropped as I would have expected after the correction. I made another correction and waited for my son to get up.

When he woke, I told him that I thought he should change his site. He had been high despite a correction. He said that he disagreed.  "I am high because there was a blockage and I fixed it."

"What do you mean there was a blockage? When? You fixed it how?"

"Last night, at four in the morning. There was a blockage in the tubing but I fixed it."

"Last night, at FOUR in the morning YOU woke up and fixed a problem with your pump?"

"Yeah, I heard the alarm and woke up and fixed it."

"YOU heard the alarm? YOU woke up??" 

"Yeah, I woke up. I got it fixed. No problem."

Yes,  as you can tell I was completely stunned. He would sleep through a nuclear holocust! He woke up to an alarm on his pump without it electrocuting him? Was my son growing up? Was he becoming responsible? Could he really wake up from an alarm all on his own?

Short answer? No.  The next night, we seemed to have had the same problem. He was high. I corrected. Later that morning I corrected again. This time the blockage alarm happened while I was there. I woke him up and made him change his site.  He was happily sleeping through the alarms. 

Oh well, baby steps. He has at least woke up once for an alarm.  That in itself borders on a Christmas miracle!

No this is not my son but he was just too cute not to add!

He isn't turning off the alarm clock!?!

The other morning I got up like every other morning. I turned off my alarm before it rang. I stumbled to the bathroom in an attempt to wake myself up. I waited to hear my son's alarm go off before I had to go in and kick him out of bed.
While I was washing my face, I heard the telltale "Beep, Beep, Beep!" of an alarm clock. I waited to hear my son turn it off.
And I waited.
And I waited.
What was going on? Why didn't he turn it off? Some mornings it will take a bit before he will bother to reach up and shut it off but as it gets more insistent, he always turns it off. Why hasn't he turned it off?
The beeping continued.
Panic began to creep in. He was high last night. I know he was. I tested and retested before I corrected.  He was low on insulin. There is no way he could have gone that low...could he? He was fine. Why wasn't he turning the alarm off?
I rushed to dry my face and put in my contacts. Of course because I was beginning to panic, my contacts jumped everywhere but into my eyes. I finally got everything together. I had to see what was wrong.

As I stepped out of the washroom I realized that the beeping was coming from my own room! While I thought I had turned off my alarm, I hadn't and since Larry was already up and in the kitchen, there was no one in the room to turn it off!
With a huge sigh of relief, I went to check on my son. As expected he was just waking up and looking at me wondering what my problem was. Oh my! What I do to myself!

Pancreatic Dynamic Duo

What was your reading?

8.1 (145ish).

Two hours after you ate...I did a great job as a pancreas this morning!

What? Who?? You? Excuse me, but I did a great job!

How do you figure that one? I calculate the bolus. I figure the carb to insulin ratio. I establish the basals and this morning I got it right.

But I push the buttons! If I didn't bolus I wouldn't be in range would I? That means that I am the good pancreas.

He had me there! You've got to love the logic and the validity of the argument!! "Okay WE make an awesome pancreas."  

He was okay with that but still felt that he deserved the bulk of the credit. I pray that one day he will take all of the credit and still will be doing a great job.  At that point I will know that he paid attention and learned well.  

For now? Well together we can be a pretty good pancreatic team! Despite the complaints, the grumbles and the missed tests, working together for the past three months we have again managed to keep his A1c under 7% and brought it down three points from the summer when he does the bulk of his own diabetes care.  Very proud momma...aka the other half of my son's external pancreas :)

A Grumbly Teen Day

I think I have seen the first signs of "I hate diabetes" from my son in a very long time. When he was first diagnosed, the new life of testing, injecting and specific eating was foreign to him and he rebelled by throwing up and refusing to eat.  It was his way of gaining control at two years old.
My son is much older now. He has lived with this disease for most of his life.  He has been great all things considered. He has done what he must for the most part. He has tried to ignore it as often as possible but he knows that he has his mother to rely on for help.  He tries to be just a normal kid who does not like to draw attention to himself or diabetes.
Recently his report card came home with less than stellar remarks. The marks were varied but most were not up to his standard.  The comments were not at all what I expected of my son.  I was terribly disappointed. He knew he had to do better. He had messed up. The discussion was very emotional for both of us. 
I reminded him that a full-time career in a dead-end job was not just beneath his potential but harmful to his health. He needed to focus on getting a good job that will allow him look after his health care needs.  Diabetes would partially dictate his career choices. For the first time, I think that sadly hit home. He was not happy.

Teen attitude...this picture really captures it!

Our latest diabetes clinic appointment occurred the day after the report card mayhem.  At the clinic he was very surly and not at all like himself.  We hate the long wait times and he was miserable.  While he was polite when they asked him questions, when we were alone he was seething. Any class in school was better than sitting and waiting. Going back to injections was preferable to seeing his team every quarter. How long did he have to do this for? A lifetime? That was insane.  He was having no part of this.
My heart broke. How do I help? How do I fix the attitude? Will it pass? Is this just a phase? What will happen later in life when he is fed up like this? Will he quit and negate his health? I have to believe not. I have to believe that he will fuss and complain but the results of non-compliance on his body will put him back on the straight and narrow.

I never liked adolescence when I went through it. I dreaded it when my oldest son began his journey and it has not improved for my youngest son. I know we will survive, but oh the bumps and bruises we may have along the way!

Adolescence and change

It is that time of year again, a time when I seriously start to think about a CGM for my son. I have been researching them for years. Cost has always been a huge deterrent but I have said that when he became more independent and before university it would be a must.

Today I spoke a bit with his diabetes team about the various systems. We were in agreement as to which system would work best...the one that I can't get right now of course.

As adamant as I am about getting a system, my son is equally as adamant about not having one. He detests the idea of another site. He cannot stand the idea of carrying around the receiver. He would prefer to carry his meter and test when he feels he needs it.

I tried to tell him that he could safely miss more tests with a sensor.  I would still have data and trends that could be used.  I would be able to rest at nights with the knowledge that he is stable or his readings are headed up from a lower range.  He would not necessarily have to test in front of his friends. He still wants no part of it.

I have been racking my brain trying to figure out how to convince him that it can work. Using it may be the best solution but it is not something that anyone has laying around for me to try him with. He is of an age when he can have a say and it kills me. I appreciate the independence but the stubborn "I will not try anything new. I am still alive with the old way."  attitude kills me.

What hurts me even more is when I read stories like I saw today.  The tale of young Matthew Calderon.  He was diagnosed at age 2 just like my son.  He played basketball and after a night of play, had a seizure and died.  In other words, he went low and never recovered. 

I try not to read these stories. I cannot think that this could be my child but I also know that technology can help to save lives. It is not perfect. It can fail but it can also help.  It can only help if it is used. It can only be used if you can afford it. If you can afford it, it can still only be effective if you wear it. 

I desperately want my son to wear it. I want him to appreciate the benefit. I want to change his stubborn attitude. It scares me for the future. I pray that this is disgruntled adolescence after a week that did not go his way.  I pray that he will be open to keeping himself as healthy as he possibly can.  

Growing up, independence and Mother's fears.

Time moves so quickly. It can feel so slow when you ask your son for the twentieth time if he has changed his site and he hasn't.  You wonder if it will ever change. Will he ever get it? Will he remember to test? He will not live with me forever no matter what.  How will he continue? Will any of it sink in? How will he handle things? What will he do when he needs a break?

I am a worrier and the thoughts going through my head lately will soon drive me over the edge if I am not careful.  Preparing for my oldest son's graduation from high school and realizing that he is on the verge of manhood, is sending my mind reeling.  My children are growing up! Have I prepared them well enough? What else can I do for my youngest? How will I handle their independence? It will not be easy but I suppose I will adjust.

When I look at my son's log book I wonder. When I see how well he pays attention to site change reminders...five days later, fear takes over.  How will he handle this for the rest of his life?

I then listen to him react as I ask "Where are the tests? Why did you not test for this food? Why did you not check after that low?".  My questions are no longer asked in panic mode.  I no longer ask in that hysterical, meltdown voice.  I simply ask the questions and wait. 

His answers are now more interesting. "Mom, my new year's resolution is to test more. I can't believe that I am missing these tests. I can't do that. I have to do better. I will definitely be working on this."

I know, you are thinking, yes he is saying everything he feels that I want to hear. You may be right but I have also watched the actions. I no longer "freak out" as often over his care mistakes.  I think a lot. I wonder what else I can do but I give him facts. We look at trends together and decide what needs to be done.

"Why where you high? Oh you made a bolus mistake. No problem. Now you know for next time." 
"Where did that low come from? Right! Exercise, okay we will work on that one but where is the retest? Oh there it is."

He is learning. The process is so painfully slow that I still fear him leaving my house.  The rational part of me says that I allow him to do a lot of his care without my hovering now.  He is left to go places and must face the world on his own.  He comes back alive and well. We still have another three plus years at least to learn, stumble, fall and brush off his knees. He has learned a lot in the past few years, he will continue to learn. We will be okay...I pray!

Muscle Mayhem

After 24 hours of nagging and the threat of using a butt site for the first time in his life, my son finally did a site change.  I was lining up the top of his little toosh but he was not having any of that! The arm that he couldn't reach was to be the site of the day.

His reading a few hours later was a little higher than I would have liked but I attributed it a carb counting error.  I went to bed and around midnight I heard him get up to use the washroom.  Much to Larry's amazement, my son never needs to get up during the night...unless he is high.  Alarm bells screamed in my head while my body craved the warmth of the of my blankets.  I forced myself to get up and waited for him in his room.

I asked him to test.  I heard him say that he was 13 (235).  Oh well, false alarm. As I headed out his bedroom door but paused and  I said again, "13.1 right?"

"No 30.4(547)"

WHAT THE #!@^??????

Suddenly I was awake.  Its time to put in a new site NOW. 

I stumbled around and found a site.  As I opened it up, we realized that the tubing was way too short for his other arm.  Crap.  I grabbed another site.  I prepared the new site and had another revelation...I should be using 30 degree sites on his arms.

As I mentioned before, my son enjoys lifting weights in his spare time. He is not into body building but his sweet little arms are slowly developing into the muscled limbs of a healthy young man.  Baby fat is giving way to muscle and that muscle is creating havoc with infusion sets! He hates the 30 degree sets. The insertion needle gives him the willies.  He has to use them on his stomach because there is too much muscle there but he still hates them. Sadly it seems that that's the price you pay for being fit. I am sure he will think its worth it in the long run.

It doesn't end with November

November is drawing to a close and so is Diabetes Awareness Month. I have seen a lot of awareness activity over the month on Facebook and Twitter. People have been stating their wishes. They have given daily facts.  It has been amazing. As the month ends though, the best post I have seen came from a friend who noted that while Diabetes Awareness month is almost over, her son continues to have diabetes 24/7/365.

In December we will still be fighting for better coverage of diabetes devices and supplies.  In January we will still be fighting to improve education, awareness and assistance in schools for our children with diabetes. In February we will still be working to get our teens to remember that they have diabetes and must attend to their care.

That last statement is the most depressing to me.  I keep wondering, when will he ever learn??? Today I realized however that it had much more to do with him living with "teen brain" than it has to do with him having diabetes.

Last night, while logging his information off of the pump, I noticed that he needed a site change.  When he headed off to shower, I reminded him that that would be a great time to do the site change he was supposed to do a few hours before. He didn't do it. As I headed to my room to read and fall asleep, I again reminded him to do his site change. He mumbled something back.  At four this morning he was high despite a change in basal rates. I knew that the site was not changed. This morning I got him up early with the words "Change your site before you do anything else." 

As he was leaving for the bus, I asked "Did you change your site?"

"I will when I get home."

AAAAHHHHHHHHHH!!!!! UUUURRRRGGGGHHHH!!! THUMP!

I was not pleased. I then looked into the garage where the box that I had asked him to take out to the garbage still sat.  He did not bother to remember the site change but he hadn't remembered to do other chores either so what can you do? Scream. Bang your head against a wall. Make him do it when he gets home and threaten to do it for him in a site that he HATES...or eat your young before you ever reach this stage. The last idea is not longer an option because he is bigger than me.

No diabetes and teen brain do not end with November.

Forgot a diabetes supply? Never a problem in a house where D lives

This evening we have a guest who has Type 2 diabetes.  He is very conscious of his diet and testing his blood but because of uncontrollable circumstances, his meter did not arrive at our house with the rest of his things.

I heard Larry tell him that he was sure my son could help him out.  He knows that we have a number of spare diabetes supplies so finding an extra meter or lancet would most likely not prove difficult.

After overhearing the conversation going on the living room about supplies, I turned to my son and asked if he could help the gentleman out. He didn't think that would be a problem. What type of meter did he want?  I suggested he grab one of the meters that we rarely use so we didn't mess up logging the wrong person's readings.

My son then asked "What type of lancing device?"

I was sure it really didn't matter. 

"Well, there is one for the hand or the finger?"

The finger would be preferable.

"Hmm, well there is a bigger one or a smaller one?"

Oh my! I never knew there was such a variety! He calmly told me that there was. I told him that I would leave it in his capable hands.  I just wanted a lancing device with new lancet, a meter, and some strips please.

This is just the first few meters and lancets I found in his drawer!

Get a letter from Santa AND help Diabetes Research!

I love Christmas. It is my favorite time of the year.  My mom was and is huge about Christmas.  She passed this love affair onto me.

Its not about the shopping or the gifts. Its the lights, the decorations, the tree.  Its time with family and friends. Its little faces lighting up.  Its tasty treats and delicious egg nog. Its Christmas songs and a light dusting of snow. I have been wrapping presents and playing Christmas music for a week now. So imagine how excited I was when I saw the latest fundraising idea from the DRI?

Its letters from Santa! For a small donation, you can have Santa send your little elf a personalized Christmas letter and help fund diabetes cure research.  It sounds like a win win event to me! We would all love for Santa to deliver us a cure for diabetes, this is one of the best ways to help make that wish come true!

Go to Santa Claus' donation page now.

Baking with Barb

I love to cook. I enjoy baking and creating new meals for my family. I love to follow food blogs and to scan through recipes.

Since diabetes moved into our house and I have gotten a bit older, I find myself altering recipes on a regular basis.  It is now important that foods be lower in carbohydrates if possible.  With a history of heart disease in my family and my own heart issues, it is also important for foods to contain more fiber and less fat.  This has meant that many family favorite recipes have been changed over the years. I am certain that my grandmother would roll over in her grave if she knew what I had done to some of her amazing recipes but we are able to enjoy the wonderful tastes while being a bit more healthy.

I have found that some recipes allow me to completely substitute Splenda for sugar while others require the "real thing" but in a lower amount. I have recently tried the Splenda brown sugar blend which seemed to work well in some cookies. I have added flax and whole wheat flour to pizza dough. I have learned to substitute some or all of the margarine or oil in a recipe with apple sauce. Sometimes the recipes work and sometimes...well Grandma did know what she was talking about.
The other day, I took my creativity to a new level and came up with a new cookie that will be a Christmas staple.  We were eating chocolate chip cookies with colored chips and I had a stroke of genius...Candy Cane cookies! If you have done this already or have a similar recipe, please don't tell me. Allow me the illusion of thinking that I came up with this first...again, at least in my mind.

I took out a cookie recipe that my boys and their friends have loved for years and began my tweaking. I put the creation in the oven and loved the taste that came out. The resulting cookies were approximately 10g of carbohydrates per cookie and really yummy if you like a peppermint holiday treat. (Sorry I haven't figured out the carb factor yet because I ate too many of the cookies before I remembered to weigh them).  If you are interested, here is what happens when you go "baking with Barb"!

Barb's Candy Cane Christmas Cookies

Cream together 3/4c margarine, 1/2c Spenda blended brown sugar, and 1/2c Splenda
Beat in 1 egg and 1 egg white/egg beater, and 2 tsp of vanilla
Combine 2 cups of flour, 1 tsp of baking soda, and 1 tsp of salt
Gradually blend.
Mix in 1/2c of crushed candy canes (approximately 20 miniature candy canes)
Drop by a teaspoon onto lightly greased cookie sheet.
Bake in oven preheated to 350F for 15-17 minutes.

Yield approximately 28 cookies
Recipe is approximately 284.75 g of carbohydrates.

Two or Three?

Last night was one of those nights...you know the ones that you wake up but debate if it really is time to test or not? I have written about the debate many times. Last night was not a lot different.

I woke up at two.  Should I test? My bed was really warm. Maybe I could wait until three. My son had gone to bed a bit early and had tested earlier than normal.  He was perfectly in range which could spell disaster later. I decided that I had to get up.

Instincts were sadly right. He was low--not a lot low but low enough to need some glucose.  I dug through his drawers looking for some tablets. I know I have said how much he hates waking up to a glucose tablet hangover but tablets it was going to be. After grabbing three or four empty tubes of tablets, I finally scrounged up enough glucose to treat the low. I fed him as he slept and then stumbled to find my book and a place on the couch.

This process continued until 3am.  Despite the low being caught at 3.7(around 65), it took a lot of glucose to bring it over 4.1 (75ish). As I sat on the couch reading, I looked outside and noticed the snow that had fallen. The weather people had forecast a storm of snow, after an hour to treat my son's low, a snow day would be a welcomed treat. I headed back to bed hoping that the weather would worsen and realizing that while I wondered if I should test at two or at three, Diabetes had decided that I would test from two UNTIL three. UGH!

Teen Diabetes Logic

"Before you go upstairs bring me in your meter."
"Well you see Mom, I've got some good news and some bad news for you."
"What do you mean?"
"Well you see there is good news and bad news.  The good news is that I have to do all my tests for the rest of the week! See, isn't that great news?"
"Huh? What is the bad news?"
"Well you see I am going to have to do all of my tests for the rest of the week because I missed a few tests today at school."

Back up the banana boat here! We have negotiated testing down to basically three tests per school day.  This is nowhere near my ideal but it works for him and is more than a reasonable request from me.  He must test as soon as he gets to school or at their first break.  This is about two hours or a little less after he eats his breakfast.  He is then to test before he eats his lunch--he is always to test before food hits his lips so how is this test ever missed? I don't know.  The final test is two hours after lunch or just before he gets on the bus.  Because of scheduling the two final time slots are basically the same.  We have a three strikes rule--miss three tests and you lose a privilege. If he has already missed two tests and he only had to test three times during the day....

"Did you test at all today???? Let me see that meter. What the heck is going on?" My mind was still reeling from trying to unravel his logic and what I was coming up with did not look good.

"I told you Mom, I have to test for the rest of the week but see I tested at 3 and I did test at 1.  I was pretty high then but we really don't know why because I kinda missed the morning test and the before lunch test but you see I do have to do all of my tests for the rest of the week.  That's a good thing."

THUD! Yes, that was the sound of my head hitting my desk in frustration. If only he could check his blood sugar levels as well as he rattled on with excuses and teen logic.

Sleepless with Diabetes

Diabetes has lived in my house for more than 11 years and 8 months.  During that time (and for a number of years before), I have never slept through the night. I wake up at least once but more often multiple times through the night each and everyone of those nights. whether my son is at home or not.
Each time that I wake up I run through a gamut of emotions... Holy crap! What's wrong? Do I need to test? Is there something going on that I am missing? Should I get up? What time is it? I must need to test!
As well as... do you have any idea what time it is? You went to sleep less than an hour ago! Are you insane? Get some sleep! He just tested before he went to bed and that was only 20 minutes ago.  Roll over.  Sleep for another hour or two maximum and then test him.  At that point it will be okay.  He is alright. Close your eyes and shut down your mind. Enjoy the break!
Are you serious? What if he is low and I missed it? What if????
Go to sleep.
At that point, I will usually sleep for another hour or so and then am woke up by much of the same dialogue and mounting anxiety.  This time it is more of a "get your butt out of bed.  You wanted to be woken up, you were, now deal with it!". 
I crawl out of my warm bed because I know that I will stress myself if I stay there any longer. I stumble into my son's room, wonder where the light is and then pause as I watch his bed.  Just as I did when my boys were sleeping in their cribs, I watch.  I hold my breath until I see his chest rise or hear him snore. If he rolls over as I walk in the door, my heart is set at ease...until I test him.
No matter what the result is though, I do have some peace.  My son is alive.  He is okay.  Diabetes did not win.  I am doing my job. We will make it through another night...I think.

For some reason, the past few nights when I have woke for the fifth time in four hours, I have ached for the too many other parents who were doing the same thing.  I have been grateful for the parents who do not have this experience.  I have longed for the day when I don't have to wake and worry...whether my son is with me or not.  I longed for the day when it is safe for him to sleep...as well as me.

More noises from Charlie Brown's Teacher

When my son came home from school, I reminded him that I wanted to look at his pump and meter later that evening.  I asked him if he knew of any trouble spots that I should be concerned with. He said that he had been high after breakfast but felt that that was probably because of a bolus error. Everything sounded good...until I checked the meter and the pump.

I looked at the meter first. There was a 5pm test and a 1pm test.  Okay, what happened to the 2:30-3pm test? There was the high from breakfast, and the tests from the previous day but wait, we were missing a few more tests.  There were almost as many missing readings as there were readings. This was not good.

As I thought about the after breakfast high, I began to wonder..."Let me see your pump."

"Are you going to make some changes?"

"Just let me see your pump.  Yeah, I thought so."

"What?"

"Well, you came home after school went straight to the fridge.  I asked you if you had tested and you said that of course you had but your meter says that you didn't. I see that you didn't bolus your lunch until 1:30pm. Since you are in class at that point and a missed meal bolus alarm went off, I am guessing that you forgot to bolus your lunch.  When I checked for a breakfast bolus, which I remember asking you not once but twice this morning if you had done it, guess what I saw? No bolus again!!! You seem to be forgetting an awful lot lately.  Are we going to have to go back to you testing and bolusing in front of me as well as texting me all of your readings from school? Will I have to demand your meter the second you walk in the door from school?"

"I can't believe this.  I must have remembered to bolus. I can't believe I forgot to test.  Let me see. There has to be some mistake!"

I handed him the pump and told him the only mistake was his in forgetting most of his care. He had only bolused for one meal that day and that was the meal that I bolused. Things would change I reminded him as I walked out of his room.

Outside, I wanted to bang my head against a wall. Oy!! We really do make one leap forward and six shuffles back.  Teens really do have minds of sieves.  Its back to observing and not just reminding. Its hoping that one day some of what I say will sink in and mean something. One day I hope my voice will be more than the squawking sound of Charlie Brown's teacher.

My take on the Artificial Pancreas Project

The other night we sat in on a lecture about the Artificial Pancreas Project.  In all honesty, I have paid very little attention to this project. I heard the hub-bub when the JDRF announced that they were funding research that was not cure based.  I have seen the online petitions asking for the FDA to move the project along a lot faster. Other than that I have been fundamentally ignorant.

I have however slowly worked to educate myself whenever possible.  I had many concerns about the project and looked forward to learning and seeing if my fears were founded. Sadly I think that they are.

Dr's. Anhalt and Krishna (his first name but his last name is far too long and complex for me) explained that the project had many levels.  They were working on simply suspending insulin during a low and ultimately reaching the point where they could truly close the loop.  Their main focus at the moment was to see a viable product on the market sooner rather than later (within 4-7 years).  The bringing together of glucometers, CGM, insulin pump technology and human intelligence was a huge obstacle.  These things work fabulously apart but bringing them together brought many new issues. To make matters more complex, regulatory bodies have never before been asked to rule on the safety of medical devices that make decisions like this one will.

For me, one of the obstacles to an Artificial Pancreas as I envisioned it was the number of sites and devices that one had to carry and use.  I asked how this was to be handled.  They stated that it was a real challenge. You cannot get down to only one site (which my son would want) because you cannot deliver insulin and measure glucose levels in the same area. They would work towards one device but felt that the loop may never truly be closed.  It was also stated that artificial intelligence would not be put into the system in the foreseeable future. 

Another issue is in the fact that sensors lag behind in what they say the blood glucose level is.  Insulin lags behind in its action time.  There is no way, at the moment to get immediate results to immediate problems. We need more accurate and timely sensors as well as faster insulins. To date there is only predictions and educated guesses.  This is very concerning to me. 

Larry voiced his concerns as well. At the moment we are talking about devices "talking" to one another.  We have so many devices that we use on a regular basis, how could we be guarenteed that they would not interfere with one another? He wondered how my son could sit in his room with his cell phone, his laptop, his XBox head set, his pump, and his CGM and not have any of it interfere with each other.  We were told that this was a real concern.  At the moment they were working to secure specific radio frequencies to ensure that there would be no interference but we still had worries.

My final concern, and the concern of many others in the room was cost.  This is a huge project.  The actual dollar figures were not available but we all knew that it was way more than what we had in our pockets. Some of the cost of the project will most likely have to be recouped in sales at a later date. Would the Artificial Pancreas then be out of reach to those who need it most? 

We were assured that the JDRF in the US was working with insurance companies so that when the product did come to market, they would cover the device.  This does not help those of us in Canada.  Our system works differently and while it is important that private insurance companies are onside with this device, it is even more important that provinces recognize its value.  Who will be working on that angle? Currently we are asking our governments to cover the pieces--pumps, glucometers, CGMs and supplies.  Will they cover the Artificial Pancreas when it comes to market? We can hope.

While there are many issues to be overcome, the project does have some positive points as well.  Moving forward with sensor technology will hopefully provide us with more and better data on blood glucose trends. This data can be used to keep A1c's down and reduce the chance of complications.  These same sensors can ideally act as our watchdogs at night.  They can wake our children or ourselves when a blood glucose level is rising or dropping to a dangerous level. That is one thing that would help this mother sleep a lot easier at night. Now to just convince my son that this would be a far better system than him building me a room in his house!

Dear Government

Those of us in the Diabetes Community are quite well aware that November is Diabetes Awareness Month. For years, I have found something new and unique to do each year.  I have sent out general information letters to everyone I could think of, I created a book of the faces of diabetes with real people and their real stories, I have gotten a tattoo, and much more.  This year I decided that November was the perfect time to get back to a focus that is very dear to my heart--advocating for increased access to devices and supplies for people with diabetes.

November is a great time to do this because of course its Diabetes Awareness Month, but it is also the month after our new government formed and a time when they are beginning to plan for the spring budget.  I wanted politicians in my province to be thinking diabetes before they sat down to spend my money.  The following is the letter that I will be sending out to all Members of the House of Assembly.  If you live Newfoundland and Labrador, I would ask that you copy this letter and send it to the Minister of Health, the Finance Minister and your MHA (if you have a newly elected MHA, their contact can be found on their party websites).  I would then ask that you copy it and send it to your friends and have them do the same.  Public pressure works and we need to change this program. If you don't live in Newfoundland and Labrador, please feel free to copy this letter and tailor it to your own needs. While a cure is ideal, until it is found our loved ones deserve access to the best equipment out there to keep them alive!

November is Diabetes Awareness Month.  There are now almost 3 million Canadians living with diabetes.  Approximately 10% of those are living with Type 1 diabetes, an autoimmune disease that attacks the insulin producing cells of the body leaving the victim reliant on an external source of insulin to live.  A person without insulin is like a car without gas, their bodies cannot function and they will die.

In Newfoundland and Labrador, people living with Type 1 diabetes currently are able to receive their insulin through the best available delivery system—an insulin pump.  This small life sustaining unit allows the user to pre-program their insulin needs into a computer which will then delivers the insulin to its user at specific, minute amounts throughout the day and with meals or to combat high blood sugar levels.  When a person with Type 1 diabetes reaches 25 in this province, they must either have the financial resources to pay the extra $5500 per year for an insulin pump and supplies or go back to a less reliable method of insulin delivery through injections. We hope that soon the government of Newfoundland and Labrador will see fit to change this and join Ontario in extending its pump program coverage to all of their residents with Type 1 diabetes who do not have private health insurance regardless of age.

Despite the advances in technology and the availability of insulin pump therapy to manage Type 1 diabetes, on November 2, 2011 the American Juvenile Diabetes Research Foundation publicly noted that one in twenty people living with Type 1 diabetes will die because of a low blood glucose level (this occurs when there is too much insulin in their body and not enough sugar).  This number is unacceptable.  In a technologically advanced society such as ours it is also unnecessary.  Beyond the incredible emotional strain that this threat puts on families and people living with diabetes, such a high mortality rate also has a large financial impact in provinces such as Newfoundland and Labrador which have exceptionally high incidences of this disease. 

This number can be changed.  A cure is the most glaring way to “fix” this problem.  A cure would eliminate the need for government funding of insulin pumps and subsequent spending on diabetes related complications.  Many great organizations throughout the world, including the Diabetes Research Institute work solely on this mandate. 

Until a cure is found, another way to reduce the number of low blood glucose related deaths is to provide real access to the technology that is available which would protect all people living with diabetes.  Recent advances in pump technology offer suspended insulin delivery when a person is already low and non-responsive as well as Continuous Glucose Monitors (CGM) which “speak” to the insulin pump.  A CGM is a computerized device worn by a person with Type 1 diabetes that monitors the trends in blood glucose levels. It tells its user when they are in danger of having their blood glucose rise or fall.  These predictions help to maintain a stable blood glucose level which reduces long term complications. The alarms also help to ward off dangerous lows that will render the person with Type 1 Diabetes unresponsive or dead.

According to a 2009 Canadian Diabetes Association report on the economic costs of diabetes in Canada, the indirect cost of diabetes related illnesses and death was approximately $8 million in 2010 and another $3.1 million in direct cost. Those living with Type 1 diabetes are responsible for 40% of these costs. The funding of insulin pumps and continuous glucose monitoring can dramatically reduce this economic burden. Insulin pumps have been shown to significantly reduce hospital visits by people with diabetes. 

As November is Diabetes Awareness month, I would invite this government to learn the facts about Type 1 diabetes.   This is a silent killer that is claiming one in twenty people as its victims on a regular basis (after drafting this letter we learned of yet another young person who died because of hypoglycemia during the night of November 9^th). This number can be changed. It has to be changed.

With proper tools, education and awareness, people of all ages with Type 1 diabetes can live to be productive healthy members of our society. I would ask that you review the provincial insulin pump program and look to expand coverage to cover all people who live with Type 1 diabetes who do not have private insurance for both insulin pumps and continuous glucose monitors regardless of their age.

Sincerely;

Barb Wagstaff

(mother to a 14 year old with Type 1 diabetes, diagnosed March 2000 age 2)

Warm beds and Dead sites

Do you know those moments when you are half asleep and you cuddle right into your partner? All is right with the world. Its warm and safe.  Life is good...and then you realize that you have a child with diabetes who needs to be tested.  You fly out of your loved one's arms and hurry to get to your child's room. 

Yes, that has happened in our house...on a number of occasions. Last night I jumped away from Larry and raced out of the room. It was 4:30am and I had not woken at 3! I stumbled into my son's room and was out of sorts for a second. We had moved his furniture around the day before and he wasn't where he was supposed to be. Once I woke enough to remember the new layout of the room, I turned on his lamp, grabbed his meter and got ready to test him.

He mumbled something and I assumed he was talking in his sleep. He mumbled something again and then showed me a piece of white mush.  It was his site. He had rolled over when I came in and the site fell out.  Crap! I had to be a lot more awake for this.  I handed him the meter to test while I found the supplies for a site change.  I was pleased to see that he was only 9(160) when we tested but feared what the failed site would bring in a few hours.

Together we changed the site.  When all was said and done, my son rolled over to instantly fall back to sleep .  I stumbled back to my room in hopes of getting back to the spot where I should have been. As I crawled into bed, I felt bad for Larry and very grateful for his presence.  He had no idea what he was getting into when he became involved with a mother of a child with diabetes.  He didn't know about the crazy hours until he started living with it.  He didn't know that many times his snuggling into me would wake me at an opportune time to test my son when I would have otherwise continued to sleep. I am sure he grumbles as he goes to cuddle into me and my body slips away to another room leaving him with nothing but a warm pillow. 

On the other hand, I am very grateful for this.  This is yet another occasion when his cuddling has allowed me to catch a problem before it became dangerous.  My son seems to quickly elevate to ketones and vomiting lately with high blood glucose levels.  The 1 in 20 statistic has deepened my fear of nighttime lows.  With my second guardian angel around to help me wake at night we will beat this thing and keep my son healthy!

One in Twenty

Recently the JDRF in the US took out an ad in the New York Times and elsewhere that has generated a lot of talk amongst people living with type 1 diabetes.  It simply stated that 1 in 20 people with type 1 diabetes will die because of hypoglycemia. It was geared to speed up FDA approval on the Artificial Pancreas Project.  

The fact that people die because of hypoglycemia is not disputed.  Those who have diabetes living in their house are well aware of its dangers.  We remind our loved ones to test and be in range before driving anything from a bicycle to a motor vehicle.  We wake up multiple times throughout the night to test and make sure that our loved ones are safe. We know that diabetes is a deadly disease.

Many were shocked at the figure however--1 in 20.  Many of us have hundreds of friends with diabetes listed on Facebook.  A quick scan would mean that five of every one hundred people we know will die of hypoglycemia.  That is terrifying. It brings the worry and the desire for a cure and better treatments to a whole new level.

Is that a bad thing? Jessica Apple discussed this in her recent post.  She suggested that November not be a time of feeling good and turning things blue but asking for change to save lives.  Over the years I have taken this same approach--take no prisoners and show the down side.  Yes my son can do everything his brother can but.... and its the but that should not be there. Its the but that allows him to live. Its the "but" that we need to change.

Its a fine line however in giving your child hope and showing the world the darkness. I like the power of the JDRF ad but fear my son seeing it. While I present the dark to politician and the general public, we focus on the positives at home.  

As a parent though, when I stop, personalize the statistic and think of 20 children with Type1 diabetes including my son  and then realize that any one of them including my son will die of hypoglycemia? I just can't go there. I cannot spend more than a second on the thought. It makes me ill and shakes me to the core. My heart is crushed and I am terrified. Maybe that is not the worst thing either.

That fear motivates me to work harder.  It makes me want to spread information to a larger audience. It makes me want to focus more on ensuring access to things like pump therapy and a CGM for my son and the 19 other children (of all ages) whose lives could be saved by better technology.  It also makes me want to take a harder look at the work of the DRI and other groups who claim to be working for a cure. 

One in twenty people living with Type 1 diabetes will die because of hypoglycemia.  That stark number needs to change. We can work to prevent this. We can work to "fix it".  As a parent, I cannot fix my son's body and take diabetes away from him but I can work to fix a system that keeps lifesaving tools just out of reach.

This disease is serious.  We need to be equally serious about keeping out loved ones alive and providing everyone with access to the tools to do so. We would not deny someone who could not walk a wheelchair.  We cannot deny someone who cannot produce insulin the tools to deliver and monitor this lifesustaining liquid.