Bolus Worthy

Today’s Diabetes Blog Week prompt asks about food.  More specifically it asks us to describe a typical day of eating.  I asked my son at the beginning of the week to do this for one day and send me what he ate.  He told me that yesterday morning he was low so he had some orange juice and around lunch time he ate two cereal bars because he had run out of bread for sandwiches.  This seemed like a pretty light day especially for him.  He said that since I wanted to know what he ate, it was easier to eat less.  So much for that idea!

Like many people with diabetes, my son has heard, “Oh I would offer you one but I know you are a diabetic and can’t have that.”  Of course, like everyone with Type 1 diabetes, the only thing my son can’t eat are poison…and cookies with poison. For every other food, he does his best to balance insulin to what he eats.  And being a teen, he can eat!

I am not sure if it is because of  diabetes and spending a life time educated on nutrition and exercise, if its him or if it is a phase but my son has become very mindful of what he eats.  It is not uncommon for him to sit down to a tin of tuna and a cup of green tea.  He enjoys his fruits and yoghurt.  He can make a mean smoothie (according to him).

He is human however and he is a teen, so he also enjoys certain treats especially when he comes to visit Mom.  He loves his grilled cheese sandwiches. He can eat a pot of boiled eggs for breakfast if given the opportunity. He requests homemade mac and cheese when he arrives.  He enjoys eating snowballs and can demolish a berry pie if allowed.  He can nibble at a tray of cookies or leave an apple with nothing but the stalk.

When he goes to A&W and orders a Grandpa burger meal, does he stay in range? Rarely but he also does not do it every day.  Each time is a challenge to balance the fat, protein and carbs but he does it. He feels it is definitely worth the effort.  Those high effort, high insulin foods are known as “bolus worthy”.  They are the foods whose taste far outweighs any aggravation after the fact.

At 17, my son is very aware of his body.  He lifts weights.  He watches his food intake, not just because he happens to have diabetes but because he wants to stay fit and healthy.  I think he has managed to handle the issue of food very well. Nothing is off-limits–a banana split for lunch? Why not!  Anything in moderation–well his idea of moderation anyway!

Homemade black forest birthday cake...definitely bolus worthy

Homemade black forest birthday cake…definitely bolus worthy

Going to School with Diabetes Has Changed

Today’s prompt for Diabetes Blog Week asks what changes we have seen since diagnosis.

In the past 15+ years, we have seen a lot of changes.  We have seen 5 second glucometer results instead of 30 torturous seconds. We have seen long acting insulin, smart pumps and now sensor augmented pumps.  We have seen Continuous Glucose Monitors go from blinded instruments that you could only get from the hospital to tools that you can wear every day to watch real time trends!

One of the biggest changes that I have seen since my son was diagnosed with diabetes however is how provinces, school boards, and schools are now dealing with children with diabetes here in Canada.

I first began dealing with this issue when my son was 3.  He still had a year to go before he would enter the school system, but the school knew about my knowledge of diabetes care.  They wanted a heads  up on what to expect when a recently diagnosed student returned to school.  Together we were able to explore the roles and needs of both staff and student.

I spent time looking at what was being done in other provinces and other schools.  The results shocked me.  With the exception of New Brunswick, most areas had little to no policies for children with diabetes in schools.  The only thing that they tended to note was whether or not (and usually it was not), they would administer insulin in school and where the insulin was to be kept.

At first I was shocked. Diabetes was not a new disease.  How could it not be dealt with in the school system? Easily…in previous years multiple daily injections, home blood glucose monitoring and insulin pumps were not the norm in diabetes care.  Times were changing and school policies needed to change as well…and they have.

In 2015 provinces such as Newfoundland and Quebec now also have provincial policies in place.  Provinces such as British Columbia are working with their nursing staff to see better protection in place.  In other provinces, people are still working to find something that works for all parties.

The big difference is that today, provinces and parents are talking. Today, school boards are contacting myself, the Canadian Diabetes Association, and parents of children with diabetes to ask what our children’s needs are. There is a willingness to learn and a willingness to create change.

This does not mean that the problem of care for children with diabetes in Canada is solved. It does not mean that parents have no concerns when they send their children with diabetes to schools.  It means that in more places, there are less concerns. It means that in more schools there is already education and policy in place. That is a wonderful thing.  It shows that over time things can change for the better. I am positive that the next 15 years will see many more leaps and bounds for our children with diabetes as they return to school.

diabetes in school
Heading to school with diabetes can be stressful

Luck of the Irish

I am not Irish.  I have never really thought much about St. Patrick’s Day.  As a grade school child, it was a day to make shamrocks and wear green to school.  Over the course of the years, it was just another day.  That was until the year 2000.

That was the year that we all spent wondering if the banks would shut down.  Would the Y2K issue crash everything that we had come to rely on? How would our lives change? Well, Y2K never really seemed to impact much but the year 2000 did forever change my life. It was the year that my two year old son was diagnosed with Type 1 diabetes and was given just 24 hours to live.

For 15 years, March 17 has been a day of sadness and celebration. I grieve for the life my son never got to have–a life without carb counting, injections or blood glucose tests.  Its been a day when I relive every minute of naivety, fear, panic, and gratitude.

Fifteen years later, I live in a city that celebrates St. Patrick’s day with a holiday.  I have had the opportunity to go to Ireland and fall in love with the country’s rich history.  I enjoy listening to many lively Irish tunes.  Its listening to those songs and thinking of this day that led my mind ot wonder if perhaps it was that Irish luck that protected us all of those years ago.

Perhaps it was the whisper of a leprechaun that put my son to the front of the cue in the doctor’s office on that St. Paddy’s day so many years ago.

The doctor who would go on to look after my son from ICU to an independent teen could have been an oversized leprechaun…with a different color beard of course.  He was definitely a stroke of luck.  He was one of the few doctors in that area who were forward thinking with their prescription of insulin regiments. He also believed in allowing us to learn and grow with my son’s diabetes care.

It was definitely the luck of the Irish that led me to make one of my first ever online searches for “parents of children with diabetes”.  It brought me to an online email support group that would become my lifeline.  With the stroke of a few keys, I “met” people from all over the world who would become my family.  I met people who knew exactly what I was dealing with and could help me to find my way.

I found mentors and friends who would be with me through the highs and the lows.  We would stay connected, meet on occasion and always been there for one another.

Through them, I would find the strength to go forward and help other people.  I would find a way to make a mark and hopefully improve the lives of other families living with diabetes.

March 17, 2000 changed our world.  It showed us the insidious nature of type 1 diabetes.  The luck of the Irish has been with us in  many ways however.  We have received  numerous gifts along this bumpy path.

Fifteen years later, my son is on the verge of graduating high school. Type 1 diabetes is just something that he has lived with for as long as he can remember. I would still give anything for him not to have to deal with this but its a part of him that he has come to accept.  March 17 is a day to celebrate the luck of the Irish, the blessing of those tricky little leprechauns, and the day that my son received his first injection of life saving insulin.

from blackberry (10)

 

 

The Countdown to NO SLEEP!

This morning as I woke up, my first thought was…”This time next week I will have been up during the night to check my son’s  bg levels!”  I know that parents who do this every night will be thinking that I am insane but I am actually looking forward to it.

It has been over six months since that fateful day when my son moved back to his home town to live with his father and left me with an empty nest.  I still have a barrage of emotions that flow through me at any given time.  I have been a full-time mom for 20 years and a pancreas for 14.  I felt like I was terminated without notice.  I wasn’t. It wasn’t personal. It was a choice he felt that he had to make for his own growth. That has been something that I have had to come to terms with…and am still working on.

When my son left, I had a firm plan.  He would be in contact with me weekly.  He would share his readings with me thanks to his new insulin pump system.  We would look over readings and he would learn how to make his own decisions. I would remain as hands on as possible with hundreds of miles between us.

As with all of my plans, it was a great plan.  As with many of the plans that we make in our lives…well it was a great plan but reality was far different. The first month or so we would call each week.  He had issues with uploading his pump information but sometimes it worked.  There would be a lot of missed tests. I would do my best not to freak out and ruin our time together.

Soon he saw his new diabetes team and they had their own plan.  They arranged for my son to see a new educator on a regular basis to teach him how to handle his diabetes care.  Two teachers would confuse the issue.  My friends reminded me of how much I had taught my son over the years.  I had to step back.

I would be lying if I said it was easy to do. I have been a hands on parent for 20 years. I have been a pancreas for 14. I am a control freak. Letting go has always been really hard for me.  Letting go of something that directly impacts the health of one of my children?  Yes, the pain of doing that was physical but I have tried. 

I no longer ask about bg levels every day.  I ask about once a week how things are going.  I ask if we need to have a chat. Does he need to make any changes to his rates? Our weekly chats have drifted further and further apart to the point of the occasional text message that reads “CALL YOUR MOTHER!!!”  Followed by a phone call, a wonderful conversation and said child responding “What do you mean I don’t call you? I call you every day.”  I reply “in your dreams. We haven’t talked in ages.”  To which he charmingly replied, “Oh, well I think about you every day.”  My children are smooth and have figured out how to appease a mother’s bruised heart.

Like I said, the “we will talk weekly” rule quickly was disregarded.  We text daily. I know that he is alive.  He has a life that involves girls, skidoos/quads, friends, and school. Mom and diabetes are relatively far down the list because let’s face it, they will always be there (at least in the mind of a 16 year old). 

Occasionally I will tell him that it is time that we chat about his readings. Recently I was struck by the similarity of me saying that and that note on the calendar stating you have to see your diabetes team–tomorrow! When I tell my son that we need to chat and review readings, I instantly get inundated with excuses.  “Well, now isn’t good. I had a bad site the past few days and my readings are everywhere.”  “I forgot to bolus my breakfast and was high so things are really out of whack.”  There is always something but as a great friend reminded me, he knows the whys behind what is going on.  This means that he has learned.  He will hopefully also learn to apply this knowledge but for now at least in hind sight he can say, “Mom, I messed this up and this is what happened.”  I guess in the world of diabetes care that is a bonus.

So for today I will count the sleeps until I have sleepless nights for a few days. I will enjoy counting carbs and monitoring testing patterns for part of the Easter holidays.  After that, I will go back to adjusting to my children growing up and being independent.  I will sleep through the night and know that I have taught them well…and pray that a Higher Power will keep an eye on them both when I can’t.

 

FIFTY YEARS with diabetes!

Over the weekend I was sent a link to a blog post.  That is nothing unusual. I regularly get links to articles on how to cure diabetes, the evils of sugar, and how to deal with my erectile dysfunction.  This article was different however. It was from a man I had met online years ago.

I truly don’t remember how exactly our paths crossed. I have used his online store at times for various diabetes related supplies. I have promoted the things that he does and follow the newsletter that he sends me on occasion. I know that he was helpful in promoting and working on changes to both the Disability Tax Credit and the insulin pump program in Ontario.

Despite all of this, we hadn’t personally connected in quite some time.  I was therefore very pleased when I received a note from him over the weekend.  It turns out this incredible man who lives with diabetes, is now a Certified Diabetes Educator, successful businessman, and a pharmacist, is also celebrating FIFTY years living with diabetes!

Fifty years! Imagine that! What does fifty years with diabetes look like? How much have things changed? He seems to be healthy and thriving.  How has he done it? Was it “easy” for him? Does he have a wonderful support network? What advice does he have?

Tino Montopoli answers those questions and many more in his open letter to people living with diabetes. I encourage you to read it in his entirety.  It will move you. It will surprise you.  And personally his best advice for anyone, living with diabetes or not is “Never lose sight of your family and friends. Don’t be afraid to ask them for help. Follow your heart and passion to do what you want to do. Never let diabetes stop you from following your dreams.” There is so much more that he shares and so much more to inspire you about life as well as life with diabetes.

Thank you so much for sharing Tino! Please go to Diabetes Depot to read his complete post and if you are looking for a great source for diabetes supplies, check them out as well!

Tino is presented Joslin’s 50 year medal by Dr. Bruce Perkins

But the Debris Remains

As I noted before, my youngest son has chosen to finish high school in his hometown which is quite far from where I live.  Despite him being gone, diabetes waste continues to surface in the most likely and unlikely of places!
There were of course numerous test strips in the washer and dryer but that means that he was testing right?
D waste2 (6)
D waste2 (3)
 
 
 
 
 
 
 
There were strips behind the computer desk and hidden in various places on the floor.
d waste (1)d waste (2)
 
 
 
 
 
 There were also caps to insulin vials

d waste (4)

and used infusion sets 

D waste2 (7)

 

 
 
 
 
  
There were strips at the cabin.
D waste2 (5)D waste2 (4)
 
 
 
 
 
 
 

but my biggest surprise was when I opened a tote that was filled with photos and old frames and found a vial of insulin!

D waste2 (8)
My son may not be living with me full-time any more, but Diabetes is still making its presence known!
 
 
 

Please Forgive me Mr. Banting

It has been hot here for most of July which is greatly appreciated when you realize that some areas in our province had record snow on the Victoria Day long weekend in May. Because of the heat, yesterday I finally broke out my insulated eco-bag.  It’s not often that I have to use it.  I bought it to bring home fish and berries that last time I was home in Western Canada.  Since then it has basically sat in my closet looking neat and clean.
Yesterday was different however.  I had to run out and buy milk and then was invited out to dinner. There was no time to drop off the milk in between nor could I buy it after.  Well I suppose that I could have but I decided to use my eco bag instead!
I pulled it down off of the top shelf of my closet and was shocked to find the skidoo boot liner that had been missing since October! I had torn apart the house looking for it to no avail and there it was quietly tucked away in my cooler bag! I took out the liner to return it to its rightful owner and came across something that made my heart sink.  There, in the bottom of the bag, were not one but TWO pristine vials of insulin.  They were still in their boxes.  They had a lovely little pharmacy label on them stating that they were two of three.
I wanted to cry.  They had been in the bag for at least nine months! Insulin is only good at room temperature for 30 days.  I felt horrible.  How many people struggle to pay for a vial of insulin and I had wasted two of three!? How many dollars was I going to have to throw away? How did that happen?
I know that I am not the first person to lose vials of insulin. I know that I am not the first person who has had to throw unused insulin out–when my son was first diagnosed, we would throw away half a vial of insulin every month because his needs were so small. It still hurts to think of that life-saving elixir being tossed however.
Please forgive me Mr. Banting! I will try to be much more careful with your gift from now on. Forgive me

Bull’s Eye!

For days since my son has been home we have been working to get his bg levels straightened out.  We have been testing and questioning. Was the ice cream we had bolused correctly? Does he need a site change? That is a new site. Is it bad? What about that steak dinner we ate at 7pm? Is that causing a problem? How intense was that workout? Did he over compensate for activity? The list of question and possibilities were endless.  A concrete answer was much more elusive.

We decided to change his basal pattern. Imagine my surprise when I saw that he was using a “school” basal pattern.  What the heck? Did he accidentally switch when he was making changes over the phone last week? He was sure he didn’t.  I was at a loss but quickly made the change back to our “weekend” aka “vacation” basal pattern.  As I moved through the days of the week, I realized what had happened…weeks ago, when school was ending, we changed his rate over to all “weekend” BUT he had one day of school to do.  It was a Thursday and we left that day as a “school” day because it was! Unfortunately we forgot to change it over and all Thursdays since had been the wrong basals.

All was fixed. The basals were all as they should be.  I made a few small adjustments and life should be perfect!

Wrong.

What to do? We waited to see if the changes would take effect.

They didn’t.

We changed the site again.

We were out of ideas and my son was running way to high for my liking.  He felt okay but was getting tired of my telling him to test for ketones. It was time to break down and do an early site change.

The new site was put in.  A correction bolus was given. We continued on with our evening. We didn’t have to wait long to see results.  By the end of the movie we were watching, his readings were dropping back into range.  I tested 3 hours later…he was 6(108)!!! Wow! That was awesome. We hadn’t seen a six in a few days! I worried that we may have over fixed things. Would he drop? Two hours later I tested again.  He was 7.1(129).  This was amazing!!!  In range!  Perfect readings! Happy, happy dance!!!!

Could this really last? You betcha!!! When I got up a few hours later he was 6.7(121).  It was  a night of pure perfection! We had conquered diabetes for one night. His basal pattern was bang on! We had hit a bull’s eye!! Tomorrow may be different but I will take the victory while I can!

Barb and son 1 Diabetes 0
True Color Image True Color Image

Another Night, Another Battle with the DMonster

3:15am.  I looked at the clock and began to do the math. How long was it since my son went to bed? What would his bg level have been? Do I really need to test yet or was it too soon? My bed was comfy.  It took me forever to fall asleep.  Did I need to get up or should I sleep another hour?

I figured that he had probably tested around 1am but something still made me drag my tired butt out of bed. I made sure to not be fully awake. No major movements to disturb the still sleeping parts of my body.  All would be fine. My mind would be appeased and I could go back to bed…or so I would have liked but the meter said differently.

He was 4.3 (77).  Not ideal for sleeping in my world.  I quickly woke the rest of my body and my brain began to fire on a few more cylinders.  It was time to find some glucose! I went to the fridge and for some reason it was filled with diet Pepsi, diet lemonade, and zero calorie flavored water.  Nothing with any decent amount of carbs in it! Okay no panic I had glucose somewhere. Eventually I found a bottle of liquid glucose.  I got my son up enough to drink and sat on the couch to wait.

I checked out the world of Twitter. I caught up on the latest happenings in the world of Facebook and read a few pages of my book.  Soon it was time to check him again.  Success…well sort of. He was now 4.6 (83).  It was still far from ideals but he was on his way up.  I scoured his room and found a bottle of glucose tablets. He would not be happy in the morning. He says that they leave a crappy taste in his mouth when he gets up but a glucose hangover it would be.  I fed him three tablets while he slept and returned to my own bed.

I wish I could say that I instantly fell asleep but I didn’t.  By 5:30 I was still staring at  the clock.  Thankfully its Saturday so I could sleep in a little bit but by 6 I checked one more time just to make sure all was still okay. He was a lovely 7(126) so I was happy to doze for a few more hours.

Diabetes may have kicked my sleep pattern to the curb for one night but we are ready to fight another day…and make a few changes to summer basal patterns!

fight the d monster

Sleep Guilt

Do you ever feel guilty for sleeping? The other night, I was in bed and really wanted to roll over and go back to sleep. I am a night-time tester and have been since diagnosis. I know some people do not believe in a need to test at night and that is their choice.  For me, night testing is not a choice but a job that I must do to keep my son safe, healthy and alive each night.
I know how important this is to me.  I know that there are nights that I have woken up at unexplained times to find him low and dropping.  I know that I have checked at other times and found him high or with site problems that I was able to stop before they turned into ketone issues.
I am very conscious of how “lucky” I am to be able to test my son at night. I know that there are parents who have lost their children to diabetes that would gladly take my place for a few nights.
I should be used to interrupted sleep. I have not slept through the night since the before the birth of my first son.  He was a terrible sleeper who never slept through the night until he was six years old! Waking, walking, testing, and going back to sleep to do it all over again a few hours later should be habit and simple.
Despite all of that, I often feel guilty when I wake up and don’t want to get up.  When I have those moments of decision–when was the last time he was tested? What was his reading? What are the odds of there being a problem right now? Do I need to test yet or can I doze off for another hour?
Sometimes those questions simply make sense.  It may have been three hours since I went to bed but I know that my night owl teen has only been asleep for an hour and he normally does remember to test before he goes to bed.  He also knows to tell me if there is a problem before he goes to sleep. It may therefore be safe to sleep a little while longer. Sometimes, those questions are purely selfish. My bed is warm.  My body is in a pleasant state of relaxation and I really don’t want to disturb it. It’s at that point that I feel guilty.
Getting up is my job. It is not one that I would have chosen but its the role that I have been given and it is very important.  My son will sleep through almost anything except the worst of highs.  Some days I wish it was different but as I have said before, everyone has something to deal with.  This is our “something” and honestly, the alternative is not worth a thought. So I live with the guilt of sometimes not wanting to get up.  I push past it and do my job–the job of a parent of a children with diabetes.  fight the d monster