Monday, March 25, 2013

Sleep? Sleep? Where are you???

Friday morning I woke to my phone ringing a half an hour before I had to get up.  That is just plain cruel, unless of course the recorded voice is telling you that there is no school and you get to continue to sleep.  In that case, its a welcome distraction! I turned off my alarm, rolled over and planned to enjoy an early long weekend.

I got my sleep Friday but it had to last me for the rest of the weekend because diabetes was not going to play nice.  My son had been running a little high at around 2-3am.  I was considering making a change but was going to give it one more night to be sure.  

Friday night he was his usual teen self and up until 1 or 2am.  He tests before he goes to bed so I continued to doze until something woke me at 4:00am.  I stumbled to his room, found his meter and checked.  He was 5.0 (90).  Such a perfect number--NOT.  I hate 5. I never know if he will stay there or drop.  It gives me panic attacks.  It is not clear cut. Its a fuzzy number that requires me to stay awake and find an answer. At 4:30 I had my answer...he was dropping.  I grabbed a bottle of Liquiblast, had him drink it and waited.  All was fine except for the fact that I had now been awake for an hour and sleep was not going to return to me any time soon.

Luckily it was Saturday so again, I was able to laze in bed a little longer between blood glucose tests.  Saturday was a beautiful day so my son took advantage of it and went for a bike ride with friends.  To counteract the effect of all of that activity, I had a Dairy Queen craving that had to be satisfied!  We headed out for some late night ice-cream.  I then dropped his basal rates for that time period. He was bound to be higher after all of that.

Wrong!  I again found myself awake after 4am.  My son had tested at 2am and was fine but at 4am he was dropping once again.  I grabbed the Liquiblast, he drank, I went to bed to read.  I retested.  He was lower still. Repeat previous performance...more Liquiblast, more reading, no sleep.  After two bottles of fast acting glucose, a temporary basal reduction, and a basal rate change, by 6am I was finally able to go back to bed and try to sleep .  Once again, I was grateful to be able to sleep in the next morning.

Unfortunately my mind and body did not agree on when to get up on Sunday morning.  By 8:30 I gave in and got up.  My son's readings continued to be lovely all day.  At 9pm he once decided to begin working out.  I have asked him to do this earlier but he doesn't listen. I asked if he tested? No, but he did proceed to test in front of me before continuing to exercise.  I asked if he had put on a temporary basal to account for the increased activity.  Again, the answer was no but he set one as we talked. 

Sunday night he was high.  Back to the drawing board! One clue may be the container of chocolate milk that he forgot to bolus for after reducing his basal rate.  We will see what tonight brings but in the meantime we both continue to learn...and catch sleep when I can! 

Monday, March 18, 2013

Lucky Thirteen

March 17, 2000  is a date I will never forget. Its the day that diabetes stormed into our lives. Its the day we realized the lifesaving properties of insulin.  Its the day that our world was turned on its ear and would never be the same. 

That was thirteen years ago now. A lot has changed.  My son is now 15 and not 2.  He knows no other life beyond insulin pumps, infusion sets, glucose tablets and blood glucose testing.  It is a part of him.  He ignores it as much as you can with a  tube sticking out of your body and lancing your finger in search of blood multiple times during a day. 

He is now taller than me and weighs a lot more than the 11 kilograms he was at diagnosis.  He lifts weights rather than sippy cups. He prefers Duck Dynasty and Gold Rush to Land Before Time.  He continues to take life in stride. 
A lot has changed for me in thirteen years as well.  My boys are now young men.  I have a lot more white hair and a few more wrinkles than I would like to admit to.  I also have a large network of amazing friends.  

As I mentioned last week, I now speak to other families living with diabetes and help them to navigate through the bureaucracy of schools and governments. I enjoy chatting with other parents and offering experience as well as a friendly ear of someone who has lived their lives. 

St. Patrick's Day for many means green beer and fun.  For thirteen years, it has been a day of reflection for me.  Yesterday I decided that that day would no longer be for somber reflection. It would be a day of celebration. 

March 17th marks two very special things--its a day to celebrate your "Irish" and since I fell in love with the country of Ireland last summer, its definitely something I would love to celebrate!  Its also the day that saved my son's life.  A few weeks ago, there was a story on the Internet about a young boy who died because no one recognized the signs of diabetes in him.  My son was given less than 24 hours to live because it was so late before this disease was recognized in him but he did live! He is alive, happy and thriving today. That is definitely something to celebrate!

Thirteen years of incredible friendships.  Thirteen years of learning.  Thirteen years of growing.  Thirteen years of change. 

When we started this journey there were no insulin pump programs. It was rare for a person with diabetes to get the Disability Tax Credit.  Glucometers took a lifetime to read blood glucose levels and require a gallon of blood per test.  Long acting insulin was something yet to come and CGMs were bulky, blinded devices used by hospitals in extreme cases. 

Times have changed and so have we.  Thank you Sir Banting for keeping my son alive.  Thank you my friends, family and those who have followed us for your amazing support! And in honor of St. Patrick...

May the Irish hills caress you.
May her lakes and rivers bless you.
May the luck of the Irish enfold you.
May the blessings of Saint Patrick behold you.

Thursday, March 14, 2013

FFL Canada Makes a Difference

This past weekend marked one of my favorite times of the year.  Its a time when I get to meet up with old friends, make new friends, and work with some of the most amazing people in the world...who also happen to live with diabetes.

Friends For Life Canada is truly that, a place where people walk into a convention facility as strangers and leave as friends for life.  This weekend I reflected on the fact that I had been friends with many of the CWD staff for close to 12 years now.  I have watched their children grow and they have become not just friends but important members of my family.

I have written before about the profound impact that the conference has on families and sponsors alike.  This year was no different.  Once again, at the registration booth, as reps and volunteers were packing up their boothes and leaving, we were told how awed they were by the experience.  The people involved felt that they were in the presence of something truly amazing. 

When I came home and got online again I found many posts from parents and bloggers stating how much they enjoyed the conference and can't wait for the next one.  Families who had never been to a conference before thanked everyone involved and noted how their lives were changed. 

Despite the amazing impact that Friends for Life Canada has on families and its participants, one thing struck me again this year...the lack of corporate support.  There are a few companies that you see at every event.  They know the value of these gatherings and fully embrace them.  

Sadly, many vendors from Canada have chose not to be involved.  They are missing out.  Parents do not go to a CWD conference because of a loyalty to one product over another. Speakers and volunteers are not there because of their allegiance to one company.  We come together for support, understanding and to learn! 

I am honored to be part of the faculty at Friends for Life Canada.  They pay for my flight to the event and cover my hotel room.  In exchange, I address various issues and help out where I can.  I also enjoy being at the conferences to see what is new in the Canadian diabetes world.  In past years, I have enjoyed looking at various glucometers, seeing what is new in insulin, and of course comparing insulin pumps.  This year comparison was not an option.  I was not able to put my hands on a variety of new technology, including a pump which we are currently in the market for. 

I have contacts in the industry that I can go to for product information but it is not the same as seeing a new meter or pushing buttons on an insulin pump.  It is not the same as talking to people who are using various technologies and hearing what they think of these products.  

What disturbs me even more however, is that many of the parents at this year's conference were new to diabetes.  According to the CWD report, 75% of these families were also new to a Friends for Life conference.  They do not have the contacts that I do.  They were not able to see and feel many of the options available to them.  They could hear about them in speakers' presentations but they could not talk to companies and have their questions answered.  

Their option is to consider going to the Orlando Friends for Life Conference where an incredible number of vendors come together to showcase the best in diabetes care.  Why can they come together south of the border but not in a Canadian conference where travel is much less? Is our smaller market share less appealing? Do we not count because we are such a small population? I would hate to think that.  

The first time CWD came to Toronto, if memory serves me, there were three different insulin pump companies present. There were at least that many meter companies showing their wares.  There were pharmacies, sweetener alternatives, glucose companies, diabetes groups and more.  This year there was one pump company, one meter company, diabetes groups, and a few other constant supporters.  The rest of the diabetes vendors failed our families.  They did not give them the chance to become informed consumers.  They failed themselves by not taking part in the most amazing conference for families with diabetes in Canada. No CWD does not pay me to say these things. This is how I feel.  This is what other families feel.

If you have a company that caters to the needs of people living with diabetes in Canada, please consider coming to a conference. Please consider getting involved. I guarantee you that the return far outweighs any expense.  Ask people who have been.  Listen to the families...

"Thank you so much everyone for a fantastic weekend in Toronto. We had a blast!"

"I'm slightly depressed not being around my diabetic mates I met on the weekend."

"it was an amazing weekend!"

"Thank you for a wonderful conference!"

and the list of accolades goes on.  Just imagine how they would have felt if they could have seen and touched more diabetes related "stuff". If they could have played with more meters or touched more insulin pumps?

Conferences like this are only sustained through the help of sponsors and corporations.  Families cannot carry any more of the burden of cost...and those involved in organizing the events will not allow them to be further burdened.  I would hope that the Canadian diabetes products industry seriously looks at becoming more involved with Friends for Life Conferences. I promise you that experience will change you.  The tears on the children's faces when they have to leave their new friends will melt your heart.  The camaraderie felt and shared by parents and grandparents will make you feel blessed to be there.

To those who have continued to sponsor and take part in this event...THANK YOU! To those who have missed out in previous years...please get involved NOW.
Some of my Friends For Life!

Tuesday, March 5, 2013

My Take on the Hub-bub About the Bio Hub

Yesterday there was a huge buzz in the diabetes community about the release of something that would bring a cure for diabetes within our reach.  People were excited, nervous and anxious.  Could we really see a world without testing and injecting? 

Late last night or sometime this morning (I only saw it this morning), the story broke. The Diabetes Research Institute announced that they were pursuing the concept of a "mini-organ"  that they were calling the BioHub

I have read a bit about it.  I have heard people complain that other groups are already investigating this idea.  Others asked, until we find the underlying cause, how can we "cure" anyone?  Finally there are those who say that another 5-10 years is the same line that they were told at diagnosis 5 years ago. 

I respect all of these opinions.  Personally, I am becoming more optimistic that a cure or something that will see my son live a life without testing and injecting may well happen in his lifetime.  That is something that I would not have said five years ago. 

This month marks 13 years that we have lived with diabetes.  We were never promised a cure.  We were promised a better life.  I believe that we have seen that in a lot of respects. 

When my son was first diagnosed, we had a meter that took 30+ seconds to count down and required me to cover his small finger completely with blood to have enough for a reading. The process was painful on many levels.  When we were first given a Freestyle Mini meter, I thought we had died and gone to Heaven.  The glucometer used very little blood and gave me a reading in five seconds! I would instantly know if my child was high or low.  I was so excited! 

Today we have all sorts of meters that don't just read quickly or use a small sample size--they now show us trends, send readings to phones and other devices.  They can be downloaded without all of the cords and such we once had to order.  Even pen and paper people like me are finding it easier to upload a meter and see what it has to say. 

Insulins have also changed.  We no longer are reliant on NPH or regular insulin that require specific schedules and meal planning.  My son was lucky in that we started out on the relatively new "humalog" and I learned how to be more flexible with it and our NPH.  Today we have three rapid acting insulin choices as well as a variety of long lasting "peak-less" insulins. 

Insulin pumps have become "smarter"  and now "talk" to Continuous Glucose Monitors.  When I first heard of a CGM, it was a blinded device that was cumbersome and only available through your doctor.  You wore it with no idea if it was actually working or what it had to say.  The machine had to be returned to your diabetes clinic to be reviewed and interpreted.  13 years later, CGMs are commonly used devices that work in conjunction with some pumps. 

I have no idea if we will have a cure in 5-10 years. My best guess is that the Hub will change.  The artificial pancreas projects will be altered but we will see something amazing.   We have seen amazing changes already.  100 years ago, my son would not be living with diabetes it would have killed him.  50 years ago he would not have been using home blood glucose and ketone meters.  20 years ago he would not have been carrying around a tiny insulin pump to keep him alive.  20 years from now that pump may be sitting on his fireplace in a glass case with a sign that says "Remember when..."

Today there is more hope than we have had in previous years.  We are making progress. Slow and steady, I finally believe that we will win the race.