Thursday, December 22, 2011

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.

Wednesday, December 21, 2011

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!

Tuesday, December 20, 2011

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.

Monday, December 19, 2011

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.


"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!

Saturday, December 17, 2011

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

Friday, December 16, 2011

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!

Thursday, December 15, 2011

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.

Tuesday, December 13, 2011

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!

Friday, December 9, 2011

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!

Thursday, December 8, 2011

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 :)

Wednesday, December 7, 2011

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!

Tuesday, December 6, 2011

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.  

Monday, December 5, 2011

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!

Thursday, December 1, 2011

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.