Diabetes by any other name...

Over the past week, the media has been busy discussing the "war between Type1 and Type2s".  Supposedly there has been a hot debate raging regarding changing the name of Type 1 diabetes to any but diabetes.  They say that some people with Type 1 diabetes feel that they are wrongfully lumped in with the stereotypes of people with Type 2 diabetes and that it becomes more difficult to lobby for cure funding.

The more I thought about this, the more I began to wonder, what's in a name? Before it was called Type 1 or Type 2 diabetes, we had Juvenile and Adult Onset Diabetes.  When my son was first diagnosed I definitely wanted a different name.  My son's diabetes was nothing like your grandmother's diabetes that she was diagnosed with when she turned 70.  My son did not get diabetes from eating too many chocolate bars when he was one. My son would not be "cured" by eating well, exercising and losing 50 pounds...he was less than 20 pounds when he was diagnosed and believe me when I say he didn't have an ounce of fat to spare

As time went on, I learned a lot more about Type 2 diabetes. I met marathon runners who were living with Type 2 diabetes.  I experienced the frustrations of people trying desperately to manage their diabetes with diet and exercise.  I learned that you did not have to be old, overweight, or a couch potato to develop Type 2 diabetes. 

There were differences between the two diseases for sure, but they both have to do with the pancreas not doing its job.  They both are silent killers. Neither diseases are taken serious enough by the public at large (or in some cases the people living with it).

This new debate has had me thinking back to the good old cancer advocates.  We all continue to stand in awe at the funding and awareness that is out there for cancer.  Not all cancers are the same however.  There is the sexy cancer, the cancer you don't want to talk about if you are a male, the cancer that is all your fault because you were a smoker or lived with one, and so many more. People living with these diseases do not ask to have each cancer recognized with a different name.  Despite all being "cancer", we immediately recognize pink as breast cancer.  We know about the "Dad's Ride for Prostate Cancer"  and we have seen the Heart and Lung Association extol the evils of smoking and its high risk for lung cancer.

Do we really need two different names or should we spend that energy simply educating people now on what Type 1 diabetes (or Type 2 if you like) really is?  People still call Type 1 diabetes Juvenile Diabetes so will yet another name make any difference in how they see our loved ones and people with diabetes?  I doubt it.

As Shakespeare's Romeo said, A rose by any other name still smells as sweet.  Type 1 diabetes by any other name is still just as horrible.  It still kills too many people.  It is still very serious and requires a lot of care.  It is still carries a terrible expense--both financially and emotionally.  The name does not change the facts.  We just need to work harder at making the world know the facts not the fiction.

But its NOTHING like having diabetes!

"Make sure you get up with your alarm in the morning and start your own breakfast."

"Why? What's up?"

"Nothing.  I just have to be out of the house early as well tommorrow to get that Holter Monitor put on."

"That thing that you wear with all of the wires and the pouch?"

"Yep.  Its a real pain.  I guess its one way for me to know what you feel like carrying around your pump all of the time."

"What its like for me? Are you kidding?"

"I know, I get to take it off after 24 hours and I don't have to bolus or anything. Its just there."

"Yeah, and you don't have to worry every minute if you are going to live or die. Diabetes is serious stuff you know! You never know when you are going to go low and you might never wake up.  You feel horrible and sick when you are high.  You just can't understand what its like."

Yes, that was my young drama king.  No he does not worry about living or dying every second like his conversation suggested but maybe he is getting the message that diabetes is serious stuff.  We have recently been dealing with a serious health scare of a family member.  Amongst other problems, this person has diabetes.  He has been able to see how it (and other diseases) can rob you of so much far too soon in life.

After the conversation we did laugh a bit because I called him on the fact that he does not think about his diabetes every second of his day nor does he worry about how it could kill him.  If he did, I pointed out, he would remember to test and bolus with a lot more diligence than he currently does.  Oh well, the drama of a 13 year old boy can still give you a good laugh at the end of the day!

You're Fired

Dear Diabetes;

We are hereby informing you that your services are no longer required.

While normally people would say that it has been a "pleasure" and that they "regret" having to tell you this, I must say that that is not the case with you. I am glad to see you going.  I have wanted to fire you for over ten years but you would not listen.  Today its for real and its final.

I will no longer tolerate you waking me in the middle of the night to treat a low blood glucose level.  I will not tolerate you keeping me up for two hours before you will allow the glucose to enter my child's blood stream and let him be safe in his sleep.

I refuse to take another night of you waking my son up to use the washroom.  You allow too much glucose into his body and he has to get up to pee through the night.  You make us have to check his blood for ketones, carefully examine his insulin pump, and change infusion sets at ungodly hours. 

I have had it with you ruining meals.  When my son wants to enjoy a restaurant meal with the rest of us, you always have to ruin it.  You make us guess at carbohydrate counts.  You cause us to second guess how fat and carbohydrates will mix.  You leave us wondering what will happen to his body after that "treat".

You have had your last day of ruining play for my son. You will never again interrupt a wrestling match between him and his friends because he needs to test.  You will not ruin Sports Day because his site fell out and he was not getting insulin to his body.

Diabetes, we will no longer tolerate the mess you have made of my child's hands.  He tests then and his lancet leaves marks there about 12 times per day.  He now has black scaring on the places he likes to use the most.  This causes people to ask him how he hurt himself and makes his mother cringe at what has happened to his beautiful little hands.

We are also done with the marks you leave on the rest of his body, Diabetes.  Infusion sets being changed every three days leave marks on his arms, legs and belly.  If he was still using injection therapy, people would think he was a drug addict.

Diabetes, you have been with us for going on 11 years now and they have not been happy ones. Yes you have caused us to join an incredible community with wonderful new friends but we want you out of their houses too.  We are all tired.  Our bodies are worn out and we do not want you attacking the bodies of our loved ones any more.

While it may be customary to give you two weeks notice or allow you three months to find a new home because it is winter, I am sorry Diabetes but you must leave today.  You have long since overstayed your welcome--actually you were never really welcome but simply a lesser of two evils.  Nonetheless, your time here is done and you have five minutes to leave.

Please don't let the door hit you on your way out.

Sincerely;

A tired mom of a child with diabetes 

Thank you Jed and Ellie Mae!

In honour of World Diabetes Day and Sir Frederick Banting's birthday, my son decided to run low.  I guess his body felt that that was a good night to show how powerful insulin could really be.

In typical teen boy fashion, he ate his way through a leisurely Sunday.  I didn't worry too much about his diabetes.  He was testing. He was bolusing and a look at his meter proved that he was in range for most of the day.  By the time the evening came, I felt that all of that food would have to catch up with him overnight and expected him to run a little high. I got him organized and headed off to bed.

A few minutes later my son tested before turned out the lights.  He was 4.6 mmol (85ish mgdl). That is too low for him to go to sleep so he happily grabbed a glass of juice, sent me a text message (in the next room) and continued his evening activity--watching old episodes of the Beverly Hillbillies TV show.  After awhile of me not responding to his text, he decided to call me...again,in the room across the hall, but he forgot that I do not keep my cell phone in my room at night.  The phone rang in the kitchen and my child retested himself giving up on his mother's help. 

He was now under 4 mmol (below 72) and grabbed some more juice.  Again, he was not really bothered by any of this.  It was a great excuse to stay up and he could watch more "Hillbillies".  Another episode it was before he was in range.  When he finally climbed above 6 (108), he shut down his DVD player and called it a night. 

A few hours later, it was Mom's turn to wake, test and find him low.  I didn't have a TV series to watch so for me it was reading my book while I waited.  I still didn't know that he had been low earlier in the night.  He told me the next morning when I asked about the call and text.  Thank heavens for a TV in his room and the Clampetts.  Who knew that a show so old could play a part in keeping my child safe during the night!

Monumental Moments

When my children were first born, I kept a journal rather than a baby book. In it I logged a lot of firsts as well as my impressions of things and stories of the silly little things that they did. The other day, while ordering pump supplies, I realized that since Diabetes moved into our house there have been a lot of "other" firsts.  

When my son was two, I remember our first meter.  It was an AccuChek and we eventually got a cute polar bear holder for it.  The meter took a tonne of blood. I had to cover his entire little finger with blood to get a reading.  We were lucky that we had meters and that the count down was "only" 60 seconds.  That was forever!  I remember when we had more than one meter and it took only 15 seconds to read!

Later when he turned three we saw the first time he tested on his own.  He knew how to lance his finger and knew how the glucometer worked. He would soon be going to preschool and it was important for him to be able to test himself.  I was busy when he needed to test so I pretended that I couldn't do it at that moment. I asked him if he could please do it for me.  He did and I remember holding back the tears.  My baby was growing up...but what a way to have to grow!

As he aged he learned how his ABC's in two languages.  He learned how to count (again in two languages).  My son also learned how many "cow-boe-hydwates" were in a glass of juice or a slice of bread.  He couldn't say the word and most of the adults around him didn't know what a carbohydrate was but he did.  Again, I was both proud and sad.  He was learning but I hated that he had too.

He is much older now and has had many other firsts.  There was the first site change and filling his own insulin cartridge. There was logging on his own and answering the questions when we saw his diabetes team.  I remember the first time one of his basal rates was over 1.0 units per hour.  I was scared to death that it would kill him! I remember the first time that we had to fill the entire 300mL cartridge because that was what he needed to get through until the next site change.  That same amount used to last him a month!

This week saw a few more firsts.  I ordered new infusion sets and decided it was time to get the longer tubing for him. He uses his limbs and hauling out a pump attached to his teenaged legs is requiring a little more tubing than it once did.  He also figured out a few more features on his pump and is customizing it to "his" needs not mine.  

Today we had follow up pictures done for a Canadian Diabetes Association campaign.  Tomorrow is World Diabetes Day. Diabetes is everywhere in our lives.  It has even become the source of monumental moments in our lives.

One step forward and...Ouch We Fell

Didn't I just finish saying that I knew it wouldn't last? Didn't I say that I knew that my son had not miraculously changed? Well, I guess I do have to grateful for small victories and move forward from there.

Yes, he is still bolusing for virtually everything that enters his mouth (and that is a lot!).  Yes, he still makes sure that I am up if he is low before going to bed.  And yes, he tests around lunch time and before he leaves school in the afternoon.  This means that we still have a couple of areas to work on...

He still "forgets" to test after breakfast.  He still "forgets" to fill out his log book.  He still "forgets" to test after a low despite his mother is nagging him in the background, "Did you retest?"  "Have you tested yet?"

Yesterday I was frustrated and I knew that part of that frustration came from being upset with myself.  I used to do all of this and now I seem to have problems keeping on top of him doing most of it.  I am getting paranoid because I have started to sleep a little more sound.  Am I waking up when I hear my child but tuning out the rest of the world? What if I am sleeping too sound and am not hearing him all of the time?

Why am I allowing the log book to fall so far behind? Why am I not checking that it is done at least every other day? Why am I not demanding to see the readings after a low? Why am I not paying attention to that test two hours after he ate? How did I get so slack? If I am this slack how can I expect more from my 13 year old?

Reality check Mom! Doing it all was easy when he was five and ate when you told him.  Doing it all was easy when teachers reminded him to test and he was not a semi-independent teen.  You do wake for the important things...your son stumbling around because he site is blocked and he is high; him hovering over your bed because he is low.  How can you keep track of two hours after a meal when every time you turn around his bum is sticking out of the fridge and his mouth is full?

Time flies by and one day seems to flow into the next.  I do look at his meter every day after school now...this is how I found out within a few days that he was not testing in the morning at school.  I did allow him a day to fix the error of his ways.  I did text him multiple times to remind him to test (he left his phone in his school bag).  I did punish him when he failed to hold up his end of the bargain and remember to test. I have begun putting information in his log book so that I have something to work with.

We have instituted some new old rules.  We are back to sitting at the table after school and filling out the log book every day.  I suggested that he test as soon as he gets to school. Its a little early but that reading will give me more information than a test 6 hours after breakfast.  He has decided to make sure he is carrying his meter at school at all times....HOLD IT!  Not carrying his meter at all times??? Nope, he keeps it in his locker during the mornings.  Ugh! He wears pants with tonnes of pockets.  He can carry his meter.  He carries it everywhere when he is at home.

My son is changing. I have some hope.  He is more aware of his appearance and his hygiene.  He is adjusting to a new environment and a new way of life.  He is being asked to do more regarding his diabetes care.  We are both trying to find our way and the stumbling? Well my knees are getting sore from tripping and I am sure his bum is getting sore from falling. Hopefully we will both keep learning and I will remember to keep my eyes focused on the small victories.

They are victories.  He is moving forward in his care...its just the backward falls that kill me as I seem to trip along with him.  The joys of parenting a teen with diabetes...I know, I am far from done yet!

Six Things for John Q Public to know about Diabetes

Being November and Diabetes Awareness Month and Diabetes Blog Day, I figured I would try my hand at the Diabetes Talk Fest topic...Six Things You Want People to Know About Diabetes.  So here we go....

1. Diabetes Kills.  I learned this first hand on March 17, 2000.  I held a lifeless two year old in my arms.  His breathing was raspy.  He was nothing but bones.  How had this happened so quickly? What was wrong? The doctor told me he had diabetes and was in ketoacidosis. His body was eating itself to survive and at that moment they didn't know if he would survive. He was put in ICU and we were told that the next 12 hours would tell the tale. Thankfully he survived but I have since lost friends who didn't.
2. Diabetes is a big deal.  Diabetes care is more than just take an aspirin and call me in the morning.  Its a 24/7 job.  My child gets up and tests his blood glucose level.  This morning he was high so he gave himself more insulin and we checked to make sure all was okay with his insulin pump.  I made him breakfast and totalled the carbohydrates he would eat. Before food touched his mouth, he bolused (gave himself insulin) for the food he would eat.  As he prepared for school, I made sure that he had the carbohydrate count for his lunch.  In a few minutes I will text him and remind him to test his blood again. He will do this again before he eats and two hours after each meal. He will test more if he is low (has too much insulin in his body). He will test before he closes his eyes at night.   I will wake through the night and test to ensure that he survives.  I am not making a mountain out of a mole hill.  This is what we need to do to keep him healthy.
3. He looks healthy because we work so hard to keep him that way.  After over 10 years with diabetes, my son is not as healthy as he is by accident.  I have worked day and night to correct, adjust, weigh, measure, and balance insulin to activity levels--basically to be a human external pancreas. Now that he has reached his teen years, the battle is harder as we work to deal with more hormones, a desire for independence, and a need to let go.
4. No he will not grow out of his diabetes. Type 1 diabetes occurs when the body attacks the insulin producing cells of the pancreas.  It is irreversible.  A low calorie diet will not "cure" him, nor will special shoes or a magic drink.  He has an organ in his body that no longer works properly.  He will no more out grow his diabetes than a person with a heart condition will grow a new heart.
5. Even for all of our hard work, diabetes is hard on my child's body.  In one day we can see blood glucose levels swing from low and requiring extra food because there is too much insulin in his system to incredible highs because there has been a release of growth hormones causing him to require more insulin in his system.  These highs and lows wreak havoc on a person's system.  I can watch my son lay on the couch because he is low and feels weak and later be drinking every ounce of liquid he can find because he is high and thirsty.  This is terrifying to watch as you can only imagine what it is doing to his body.  You can feel the kidneys being damaged and so much more.  It is my job as a parent to protect him and his body and diabetes makes that task virtually impossible.
6. Why we need a cure.  Diabetes takes a toll on everyone involved.  It takes a physical toll on my son as I mentioned. It takes an emotional toll on him as well. When others are playing  he is testing and recovering quietly from a low blood glucose level.  While others are eating he is testing, counting carbohydrates and injecting insulin in his system.  It takes a toll on those around him.  Siblings may complain about the time spent on the child with diabetes.  Parents can become exhausted testing at all hours and worrying about their child's care. There is also a huge financial burden and worry.  Diabetes care costs.  Test strips are close to a dollar a piece and we use at least 10 per day.  There is the cost of insulin, pumps, syringes, infusion sets and cartridges.  If you are lucky you can afford a continuous glucose system that will provide a real time guide of blood glucose level trends but the sensors cost too much for those of us without insurance.

Only six things and yet there is so many other things that the public needs to know.  Diabetes is terribly misunderstood.  Technology has increased the visibility of the disease but the public still does not know the difference between a cell phone and an insulin pump. Perhaps this blogging topic along with so many others who are using social media to educate John Q Public this November and throughout the year will truly make a difference in public perception.

The Results of Nazi Mom...so far

Its been a little over a month or so since I wrote about my decision to be a Nazi Mom when it came to my son's diabetes care.  He had not been testing at school, was lying about readings and his actions had basically scared the crap out of me.  I had revoked a lot of privileges for a week, made a new rule for him to text me each day and demanded to see his meter the minute he walked through the front door.

Well, I wish I could say that he started texting, testing and was instantly reformed.  He wasn't but we have seen some changes.  While he didn't always text, he was at least testing at least three times a day at school.  The testing amount is not as often as I would like but it beats no testing during school hands down.  I have learned to take small victories and this was definitely a victory.

He has been pretty good about bolusing (thankfully) and began to chastise himself if he forgot.  After forgetting a test or two and a bolus, he went through the house with yellow sticky notes.  The notes were posted in his room, by the computer and other places he felt he might be.  They read "bolus or die or worse" and "... test from Me or die".  I commented that he was a little extreme with his wording.  He just shrugged it off and said it was important that he do this period.  I left him to it. 

Each week (or more if warranted), we sit down and look at his log book.  If he knows that something is not working, he will come to me and say that we need to make a change. We are far from perfect at any of this.  I don't expect that he is now perfectly responsible. I do however feel a little better about him growing up and taking full responsibility "one day". 

He is occasionally paying attention to alarms. He gets himself up in the morning when his alarm for school goes off.  He can make some decisions regarding bolusing and correcting. He now makes sure that if he is low before going to bed that I am up to check on him in case he falls asleep.  Its been a long and painful process. I know we are not done but those small little victories mean so much at this point in our lives!

Diabetes is about our LIFE

Yesterday a wonderful friend by the name of Catherine posted an apt status on Facebook.   She noted that "November is National Diabetes Month.  It isn't pink or sexy.  It doesn't involve boobs or football players or cute t-shirts.  Its about our LIFE.  Its about being grateful when your loved one wakes up in the morning.  Its about 3 am blood sugar checks, boxes of juice, and the smell of insulin on your hands when you change a pump site of fill a syringe.  Its about life!" I shamelessly stole that status and noted it on the Diabetes Advocacy Facebook Like Page.  

 

The reaction was strong.  Pam remarked that she was crying while reading this.  She lives in a house filled with diabetes (she has Type 2 and other members have Type 1).  She noted that this status reflected her life.  Like too many of us, Pam does not get a full night's rest because she is up testing blood glucose levels.  Also like the rest of this, she does not state this to gain pity. She does what she does out of love.  She realizes that diabetes is deadly even if the general public does not always get it.  

Pam reminds us that diabetes impacts all aspects of our life.  It demands respect and if you do not give it...well it win.  It will kill you and only then will people take notice.

 

What a stark reminder for those of us who live in similar situations as Pam.  We need the rest of society to understand.  Diabetes is often swept to the side as not being serious. Society likes to blame the victim--you brought it on yourself.  For those of us whose children were only young when diagnosed, we understand the sting when people tell us that we must have fed our babies too much chocolate.  Personally that one always kills me. I fed my son too much junk? He was 2 when he was diagnosed.  He never had his first chocolate bar until he was at least 6 years old and that was a Halloween sized treat!  I did not fill his baby bottles with pop and sugary drinks.  My son is not to blame.  Bad genes? Environmental triggers? We don't know what to blame but it was not him nor is it our care of him.  We did all we could to keep him healthy. 

 

Today we look to society to help us find a cure.  In the month of November we look to society to try to understand just how abnormal our lives have become since diabetes moved in.  We want them to understand that if we do not respect this unwanted house guest, our loved ones could die.  Diabetes is dead serious.  Yes it is manageable.  Yes our children and loved ones can live very full lives but it is work.  They must think constantly about how their body reacts and what it needs.  This is not a "normal" life.  This is a life with diabetes.     

 

Just another night with Diabetes.

"Click"
Then the sound of liquid hitting the toilet.
My son is high.
Its three in the morning. Of course he is high but he must be really high to have woken up to use the washroom.
I get out of bed as well.
"Have you tested?"
"No, my site has a blockage."
"Did you change the site?"
"No, its working now."
"If it said that there was a blockage, its not just going to go away. You are going to have to change the site."
"No, I am fine."  "How did you know the site was blocked?"
"It alarmed."
"It alarmed and you woke up????" Good heavens there could be hope for him yet! Nothing wakes this child up.
"Yes I woke up. I checked the tubing. There was a lot of air.  Must have been an air lock."

Okay Mr. Fix-it, we will see in a few minutes.

When my son gets out of the washroom, I am sitting on his bed armed with his glucometer. I pass it over to him and he tests. 28.6mmol (515mgdl).  I pass over the ketone meter.  This is not going to be nice.  Small ketones...and its 3am.  We both want sleep.

My son begins to correct for the 28.6.  Mom is still thinking that this will not work and we need a new site but what does Mom know? Oh, it turns out Mom knows a lot.  The correction stops.  "Blockage".  Its good to be right because I will feel better with a new site. The fact that we just put in a new site less than 4 hours ago makes me want to cry but since the cost of sites is currently covered by our provincial government, the financial pain is eased at least. It still hurts to know my son has to put another hole in his body...again.

"No more stomach.  We are doing a leg this time." I am told.

I also am told that I get to do the injection.  Why me? He does this all of the time.  I am guessing because its 3am and he figures I am a lot more used to being up at this time than he is.  Sad but true.

I jab his leg. 
He corrects.
He pulls up the covers and heads off to sleep.
I shuffle across the hall to do the same.
I will wake to test again soon.
The site is good.
Its just another night with diabetes.

Diabetes Awareness Month is here again

November is Diabetes Awareness month. Since November of 2000, I have been doing all I could to raise awareness during this time frame.  I would send out letters.  I would forward emails.  I would post statistics and explain how diabetes almost killed my son.

Yesterday marked the 90 year anniversary since Sir Frederick Banting had that "Eureka!" moment that led him to discover insulin.  For those of us who have seen what life can look like without insulin, we are forever indebted to this man who died before many of us were born.  The path he forged in finding an external source of insulin has allowed my son to thrive today.

Insulin is not a cure.  The challenges my son faces each day amaze and frustrate me. In an attempt to watch my waistline shrink instead of grow, I decided to log all of my meals on my Blackberry. Every morsel of food would be noted and the calories would be recorded.  I lasted for a day but I make my son do this regularly.  I help. I calculate.  I support where I can but its not an easy task.  No wonder he falls sometimes but sadly for him its not a matter of vanity, its a matter of life and death.  Too much or too little insulin is hazardous to his health.

Since that fateful day in March of 2000, my son has been stabbed by a needle to receive life sustaining insulin over 7200 times.  The number is actually smaller than it might be thanks to the insulin pump he has been using since he was five.  The "pump" has a small catheter (infusion set) that stays in his skin and is only changed every 3 days (or when it falls out while having fun).

While insulin keeps my son alive, balancing the intake of food, insulin, activity and health requires the constant lancing of his fingers to test his blood.  Not including routine blood work or testing his blood for ketones, he has tested his blood with his glucometer close to 40,000 times. 

I see his hands each day (which are a mess because he only uses one spot to test no matter what) and I look at the small red marks on his body that show where the last infusion set was placed for his insulin pump.  I can see the evidence of all of this jabbing.  As I wrote out the numbers above showing how often his body has been stabbed, my mind immediately thought of a water balloon with multiple holes and water pouring out in small streams everywhere. Thankfully he is not squirting blood on a steady basis (although he has been able to get blood for testing on occasion just by pressing on a point) but I would love to see a cure for this disease before he starts!