Amazing!

Last night I was sitting down filling out my son’s log book.  I have given up on him logging.  I have revamped my log book, settled for the information his pump and meter will give me and will work from there. 

As I went over some of the readings I said, “Wow! Friday’s school readings were perfect. You did them all when you were supposed to.  Great job!”

“Of course I did. I am amazing!”

Amazing would be if you did this for a week.
Amazing would be if you did this for a month.

Amazing would be if you did this when you were at your father’s during this summer!

“I said amazing. I never said that you should expect miracles!”

Oh my.  I guess I will have to be grateful for the days that he gets it and does all of his testing.  One day I can hope for more…one day.

Are you ready?

Every day we are hearing about more and more natural disasters.  There is flooding in Quebec and Manitoba. Wildfires are burning out of control in northern Alberta.  There are tornadoes going through various parts of the US.  Tsunamis and earthquakes have hit in places we would not have thought about previously. 

This means that those of us who have felt safe and believed that we lived in an area that could not be impacted by Mother Nature are being given a wake up call.  Since Diabetes moved into our house, we have been hit by two major storms that cut off roads and threatened power.  How has it changed me? It hasn’t.
I am one of the many people who are not ready. I have an emergency supplies list on my website.  I know that I should create a box to be taken at a moments notice.  Evacuees in Slave Lake tell that they were given less than 10 minutes to get out of their homes.  Would that be enough time for me to grab insulin, pumps supplies, test strips and more? No.  We are way too disorganized for that.  It is time for me to change that though. Moving a lot further up my “to-do” list is make that box. Mother Nature will not be concerned if I do it later or do it now.  If she decides to take my home she will do it on her terms not mine. 
As we watch the news, I can’t help but wonder how many other people living in these disaster ravaged places have also put off creating their emergency box?  Thankfully Tu diabetes has created a list of people who are gathering supplies for people like me who thought that this could not happen to them. The JDRF in Missouri is also collecting unopened diabetes supplies that can be shipped in care of:
Jennifer Conter-Jones
(Development Coordinator JDRF Ozarks)
560 Peacock Street
Rogersville, MO 65742  USA
 The diabetes community has a large heart and I know that many of us will donate and help as we can. The thoughts and prayers of my family and so many others go out to all of these people devastated by what has happened.  In the meantime, before disaster strikes my area, I think its time to get our supplies in order just in case, Heaven forbid, anything like this ever happens near us.

Half a step forward and too many backwards

I am beginning to think that diabetes education with a teen is a half a step forward, seven steps backwards.  The only thing that is changing is my reaction. I explode inside and am (so far) still being pretty matter of fact and eerily calm on the outside. 

After going to school with no insulin and a week old site last week, my child told me that his pump battery needed to be changed.  I asked if he had a new one and he said yes.  I said to change it right away.  NINE hours later he changed the battery.  He told me that he wanted to see how long it would last after the first warning–A lot longer than my nerves!

This weekend was a long weekend.  Like many others, we headed out for a weekend in the country.  This time he brought TWO meters. He had spare strips. He had spare batteries. He brought extra insulin and had numerous infusion sets AND cartridges.  He was happening! Well he at least had the supplies but did he use them was another matter entirely.

The weekend was filled with friends and family.  We enjoyed barbecuing, conversation and watching the kids of all ages playing in the huge lawn area.  My son wrestled, was chased by the younger kids and ate.  He ate marshmallows.  He ate hot dogs.  He ate steak and salads.  Food was plentiful and Mom provided a running carb tally along with the ever present–“Did you test?”  to which I was always told “yes”.

On our last day, I decided to see how Diabetes was behaving. My son had been really active.  Besides playing, there were long walks, chopping trees, hauling gravel for the driveway, gathering rocks and building a new fire pit. It was a very active weekend. I had expected to see a few lows but also knew that I had compensated by giving lower boluses for many meals.

As I scrolled through the meter I felt my blood pressure rise.  There was a reading here and a reading there, with many missing readings in between.  He had been active.  He had been eating but he hadn’t been testing! Well he had tested–at one point during the day just not during most of the ten other times that I asked him!

A cool rage was building inside.  What was it going to take to get this kid to get it?? When people were around, he just does not want to be different. It does not matter that they were very aware of his diabetes.  It does not matter that Larry’s grandson had a test strip in his hair when he got up in the morning.  Diabetes is a part of our lives but he was going to keep it hidden as much as he could.  A site change was done in a separate room and testing could only be done, it would seem, when no one was around to see it happen.

I appreciate his desire to forget Diabetes.  I would love to forget it as well. I understand that it must be tiresome to carry around that burden every day.  He is great about bringing a kit with him. He takes glucose with him everywhere he goes.  I just wish he would be a lot more comfortable with using it!

I didn’t scream or yell at him after seeing the lapses on the meter. I didn’t punish or take anything away.  I decided to change gears this time around.  This time around I am asking for proof of every test.  Before supper, I ask to see the meter after he has tested.  Before bed, I ask to see the meter.  I will end up slacking on this. He will comply, I will become complacent but perhaps one day it will sink in and we can both be happy.

In the meantime, its a baby step forward and wait for the seven steps sliding back…or maybe, just maybe?

Dear Minister of Health, Why won’t you cover my insulin pump?

Over the past few weeks I have received a number of emails from frustrated parents.  Their children are moving onto post-secondary school and have reached the magic age of 18.  Their pump coverage, if there ever was any, is ending and the parents are at their wits end. They fear the high costs associated with pumping will mean that their children will have to use a less effective method of managing their diabetes.

Why does coverage end at 18? Yes, diagnosis usually happens before 18 but why end coverage at that point? The disease didn’t stop.  They still need a pump, insulin and supplies.  Why is this happening? Why aren’t more provinces covering pumps? What is going on?

Those are just some of the questions and frustrations that I hear. I truly feel for all of these parents.  When my son received his first pump, it was given out of love.  We were at a family reunion and my son was on multiple daily injections.  He ate at specific times–which did not mesh with the times that the rest of the family was eating.  He often sat alone. It was heartbreaking. They had heard me talk about an insulin pump and decided to pool their money so that he could have one. I cried a lot that day.  The memory still makes my eyes fill with tears.

His pump supplies came in a no less emotional way.  I wondered how we would pay for them. An extra $200+ per month in a single income family would not be an easy burden but my son’s health was at stake.  A friend knew of our plight.  She had extra supplies and made sure to share with us.  She found others who were switching pumps and no longer needed their supplies.  They were sent to us as well. It was a true blessing that we were later able to share with someone else.

A few months before my son’s pump warranty was to expire, our advocacy efforts paid off once more and the province that we live in stated that they would cover insulin pumps for children up to age 18.  This was a victory.  We now had the first bite out of the cookie but the rest of it was still out there.  With a lot more hard work, letter writing and educating, we were able to add young adults up to the age of 25. The final piece will be to get all adults covered and that must still be done.

Back to the original question though–why 18? I think its completely political.  A small child with a pump looks good on the government who provides it.  Can you imagine depriving a three year old of a piece of medical equipment? Now look at the image of an adult with a pump.  The adult can get a job.  They can pay for their own pump. Why should everyone else pay for them? They can live without a pump.  Injections keep them alive and if they would go out and get a real job they would have their own insurance that would cover luxuries like a pump.

Okay that was pretty crass but sadly some people will view it that way.  As a person who has advocated from pumps for all ages, I tend to try to spin things in a different way.  Many adults will have jobs that provide them with the insurance to cover their pumps. Even more adults with Type 1 diabetes would have the opportunity to be in the workforce if they had a better method of insulin delivery through access to an insulin pump.  The number of adults who require pumps and do not have insurance is relatively small but their choice of occupation or employer should not dictate if they can use an insulin pump or not. 

When my son talks of a career, my mind quickly turns to “what sort of benefits will that job come with? How will you afford to cover your supplies?”  I hate that. Why should my son be limited by a disease that costs so much to take care of?

So to answer the question, why does coverage end at age 18? Because we still have to educate the public and those in government who control the purse strings why continuing pump coverage makes financial sense.  We have to teach them that the small outlay of cash to maintain the program throughout the life of the person with diabetes will mean that these same people can be productive members of the workforce for longer and have a lower chance of being a burden on the health care system because of complications.

To the question, when will our province provide any coverage? The answer has some of the same components as the last one…when we educate them.  When we make them understand that the benefits far outweigh the costs.  Only then will we see improved coverage. 

People are working on this and have been for years.  We need more people working together.  We need our voice to be stronger…and it will!

He’s only thirteen, he’s only thirteen…

He’s only thirteen.
He’s only thirteen.
He’s only thirteen.

That is the mantra I was saying to myself on my drive to deliver insulin to my son at school first thing this morning. After recently bragging about his A1c, after talking to other parents about what was working to get my kid to take care of himself and be responsible, I am now back to the point of knowing why animals eat their young.

Today’s drama began last night.  At 4am, I stumbled into my young son’s room to test him. He was high.  I checked his pump.  He had 10 units of insulin left and was supposed to have changed his site earlier that day.  Gee, I guess I knew why he was high!  I grumbled and left the cartridge for him to fill up when he had his breakfast in the morning.

Breakfast arrived with its usual chaos.  I was cooking bread dough (toutons).  It is not the healthiest breakfast on the planet but a treat loved by our household. As I cooked, there were also dogs to be fed and my son’s lunch to be made for the next day. When my own tea and toutons were done, long after my child had left for school, I remembered, “He didn’t bolus his breakfast!”

Larry asked how I could know that.  I told him that with that breakfast he would have had to verify the carb count with me and he didn’t.  I texted him and asked if he bolused.  No answer.  I called him.  This time I did hear from him. Nope, he had forgotten.  Ugh! I gave him a quick total and told him to bolus NOW!

A few minutes later I got a text from my son.  “I only have 2 units of insulin”
(Insert a lot of cussing under my breath) “I guess you didn’t change your cartridge this morning before you went to school.”
“I forgot”

(More swearing to myself as I headed to the shower).  What would he do if I were not able to just hop in the shower and run him up a full cartridge of insulin? He had two units and his breakfast required close to 12!! For petes sake! You would think after a day of alarms he would notice something like this! (insert a lot more cursing to myself and then add in the fighting back tears of frustration) When will he learn? Will he ever learn? Larry had said that I will still be asking him if he bolused when he is 35. I agreed and now wondered if he would still be forgetting everything like he does now?  We have been at this for over 11 years! When does it sink in?

And so the internal conversation continued as I got ready and drove to my child’s school.  The closer I got to the school, the more I began saying “he is only 13.  He is only 13.”  It was interupted by the “when will he ever learn? I brag about how much he has changed and how great he is doing and then this? He constantly forgets site changes and now no insulin despite repeated alarms??…He is only 13.  He is only 13. The mantra continued.

By the time I met him at the school I was a lot calmer than I had been but he was still very skiddish. I was waiting for him in the foyer. I could tell that he wanted to take the insulin and run.  No such luck! I sat him down and asked for his pump.  We were doing a site change right then and there as well as putting in the new cartridge and correcting.  He could not get away fast enough when I was done!

This evening when I picked him up after ball hockey, he immediately told me that he was “getting better at this diabetes stuff.” 
How do you figure that one?
“Well last year I forgot insulin a lot of times, but its only been twice this year!”
And that makes things better how? You had 12 hours of alarms that you missed!

He continued to quietly stay in the backseat for fear that I may yet choose to eat my young.
Ah the joys of life with a teen with diabetes!

Day 7: What do you get out of the DOC?

We have finally reached day 7 of Dblog week and once again it was challenging week.  The topics asked me to look at things from a different perspective.  I loved the great pictures of all things diabetes and appreciated the unique perspectives that we all come from. 

Today we are asked to discuss what the diabetes online community has done for us.  For me, it kept me sane! I began this journey into the online world approximately ten years ago.  Before that time I knew very little about computers.  I knew nothing about the Internet and had no clue as to how one created a website.  I lived in a small, isolated community and was raising two young boys with no immediate family around to rely on.  I often felt overwhelmed and alone.

My mom convinced me to join the age of technology and “go online”.  I immediately searched for other people like me “Parents of Children with Diabetes”. For those who are PoCWDs, you know exactly what that search came up with.  I came across my first and most lasting support source of support–the Children with Diabetes website.  They offered me answers.  They taught me what questions to ask.  They gave me the courage to stand on my own and to stand up for the rights of my son and others.  They offered me a safe place to vent and a place where people understood.

The online community expanded and I have been blessed to meet many more people who have Diabetes as an unwelcome house guest. I created my own website that attracted new friends to me.  We worked together and amazing things happened.  Over time the online community began to change.  People wanted to know more about our lives and so my blog was born.

I had written about our challenges in fighting for the disability tax credit.  I discussed the fight that was involved in getting insulin pump coverage for our province.  I also chatted about the challenges of living with diabetes.  Family and friends who didn’t have diabetes did not always understand.  My blog became the place to help them have a glimpse into our lives.

It worked. Some people learned.  It also became great therapy for me. I could vent and scream (as much or more than previously) and people began to comment that they were living the same life.  I began to follow their posts as well and my diabetes world expanded that much more. 

What has the diabetes online community given to me? A place of understanding.  A group who “gets it”.  A place to challenge me to rise to new heights.  A group of people who inspire me. A group of people who ground me.  Its not a bad group to be a part of!

Day 6: Diabetes Pics

My favorite day of the week…its Saturday and all I have to do is dig around for some of our coolest diabetes shots (and try not to repeat last year’s pics!).

  
  
Relaxing amidst the Rufus and Ruby bears we gave to children with diabetes.

Testing on the streets of New York City
A day spent with just some of our amazing diabetes “family”

Sometimes you just need a little down time…but the supplies are close at hand in the white cart.

With age come creativity!  The “Diabetes Boat” has tape for his infusion sets, wipes, a diabetes pencil and other diabetes supplies.
A cartridge change among friends
No matter where we go, the test kit is always with us.

Day 5: The Greatest things I have done because of Diabetes?

What awesome thing have you done because of diabetes? This was Day 5 of Diabetes BlogFest’s question. I apologize for being late, but Blogger was giving me such a hard time that I didn’t get this done when I should but I promise to provide an answer anyway.   

There is so much that has happened because Diabetes moved into our lives. I have met amazing friends.  I have connected with incredible networks.  I have had the privilege to speak with so many people whose families are impacted by diabetes. 

I have worked to give back as much as I can. I have done talks on dealing with diabetes and schools here in Canada.  I have written letters, articles and talked about diabetes on TV and radio.  I have advocated to protect the rights our children with diabetes in school, to get all people living with diabetes insulin pumps and better access to supplies, and a few other things.

One of the most well known of those fights is the fight to have fair and equal access to something called the “Disability Tax Credit“.  Before Diabetes I did not know anything about this tax credit (the DTC). I was not that well versed on tax law period.  I have always been someone who would voice their opinion on a perceived injustice however.  When I applied for this tax credit for my son with Type 1 diabetes, I quickly saw how unjust the tax system was to people with Type 1 diabetes.

I have written about this battle before.  The short version goes as follows–I applied for the Disability Tax credit for my son.  It was clear to me that he required Life Sustaining Therapy.  I had seen what would happen if he did not receive insulin and giving him insulin required most of my day to monitor and adjust.  The federal government did not see things quite as clearly as I did and it became my job to educate them.

With the help of an incredible mentor, our story was presented to a committee who was looking at the fairness of the current DTC system.  We knew the system to be anything but fair.  To get this credit if you had diabetes you had to be strong, have an education and possibly even a lawyer. This was not right.

Through my website, a large number of people joined me in writing letters, questioning the Finance department, and contacting their MP.  By the year 2003, the Federal government announced changes in their budget.  It was first time that a disease and such a change was announced with the Federal budget.  The changes to the DTC would cost over $40million.  That is money that would go back into the hands of people living with diabetes.  It  was a surreal victory that brought me to tears.

Without Diabetes, I would never have known about this problem.  I would never have taken up the fight and I would never have been able to help facilitate a change in tax law that continues to help people living with diabetes to this day.

Day 4: The top 10 Things I hate about Diabetes

When I finally crawled out of bed this morning I felt, old, defeated and depressed.  I felt “dia-beaten”.  Well not completely.  I refuse to ever let Diabetes beat me or my son but last night it gave us a good kick in the stomach that reminded me of why I so hate this disease.
Today’s challenge for the Diabetes Blogfest is to list 10 things that you hate about diabetes…where to begin?

1.  I hate that in an instant a high can turn into an emergency that quickly shows me how fleeting life can be and a low will keep me up all night in a panic wondering if Glucagon will be needed.

2.  I hate the fact that I can never had a restful, peaceful night’s sleep because highs or lows could cause disasterous results.

3.  I hate the silent way it attacks my son’s organs.  With each out of range blood sugar, I picture small blood vessels quietly being damaged or dying.

4.  I hate the fear of tomorrow–wondering if we will be able to cheat diabetes and avoid complications for his lifetime.

5. I hate when Diabetes interferes with holidays–creating lows that allow him not to participate or highs that just make him feel out of sorts.  It also requires its own suitcase filled with supplies that it will not pack itself and will throw a tantrum if something is forgotten.

6. I hate that Diabetes has made me have to be extra cautious when he goes to school or away to his father’s. I have to worry that he is not receiving the best of care.  I hate that he is forced to carry the bulk of the responsibility for his care, despite his age, when I am not with him.

7.  I hate that we have never been able to lose the diaper bag–it just became a diabetes bag. He can never just leave the house.  He must take glucose, a meter and so much more.

8. I hate that he is tethered to a computer just so that he may have the best quality of life. It reminds us that he is only as healthy as we work to keep him. 

9. I hate the high costs of keeping him alive and not always being able to afford the very best of care for him.  I hate having to fight to get what we have and to keep him healthy for as long as possible. I hate that so many basic things are such a fight to obtain.
10.  I hate the thought he will never truly be independent. When he is low, he requires someone else’s help.  He needs to always tell someone about his condition.  If he to chooses to live on his own as an adult, his mother would still be calling all of the time to make sure he was okay. He must find a life partner who is understanding and accepting of his diseases.  I hate that life for him.
11…Oops, I am supposed to stop right? Diabetes has brought blessings to our lives but the fear and lack of control that it brings to us is something that I truly and absolutely hate.

Day 3: Diabetes Bloopers

Day three of Blogfest as proven to be my biggest challenge.  Today I have been asked to discuss the funny things that have gone wrong since Diabetes moved into our house.  I will admit to having heard some great stories over the years from other families.  There is the father who tested the dog during the night rather than his son.  There is the mother, so exhausted that she bought a “serious”  alarm clock.  The alarm, its blinking lights and siren, woke the neighbourhood and brought the police to her door out of concern, but this exhausted family slept through the clock’s screams.

We are by no means perfect.  I have stumbled into my son’s room at night and almost tested his brother or any other young person who happened to be sleeping in his room at the time.  I have inserted an infusion set repeatedly unable to understand why it would not stick…until he told me that I had not taken off the backing from the site.  We have found test strips in plants, washers, the fridge and more.  Our shower was covered with dead infusion sets for years.

We have the story of my mother trying to test my child at 3am for the first time.  She had sweat pouring off of her as she tried to lance his finger without disturbing him.  After a half an hour, he woke up, grabbed the lancing device and dealt with things himself.  He never let her touch him with anything sharp again.  He even did his own site changes for the first time in his life rather than letting her stab at him.

We have enjoyed asking in a rather loud voice, ARE YOU HIGH? When out in public and seeing the horrified looks of people passing us by. 

We have made fun of Diabetes.  We have created Diabetes songs to help with site rotations but to come up with a best of blooper…well we are still waiting for that one that truly sticks out.  In the meantime we will continue to enjoy the fabulous tales of others until our turn arrives.