Diabetes has left the building...but will I survive?

The other night I got up and for a change I didn't first lay in my bed wishing that I didn't have to get up.  This night I woke up, pulled myself out of bed and felt almost sad that this would be my last night test for a few days.

My son has gone to his father's home for a few days over Christmas.  On the plus side for me (besides not having to get up and test) is that his brother will be home with me for a few days while he is gone. The downside is that I worry.  I am a mom.  I am sure its in the job description.  I am a mom of a child with diabetes--I worry a little more than normal.

Yesterday as he packed, all of his diabetes supplies were in his suitcase and carry on. He only had two pairs of underwear and one pair of socks BUT he had all of his diabetes supplies! I was impressed that he had his priorities straight.  I packed his log sheets and reminded him that he has a doctor's appointment the day after he comes home so his sheets had better be in tip-top shape. 

I guess I did not hide my fears of him going well. My fiance said that I was a wreck.  My son told me to relax and think about it as if he was just going to a sleep-over...and then got in a car accident! Well, you see a sleep-over would mean he would be home the next day but if he was in a car accident, he would be in the hospital a bit and delayed. Funny but that did not make me feel any better!

I worry that he will fall into old habits and testing will be something that is only done when he feels low.  I worry that he won't test at night.  I am nervous about him not bolusing. Yes, I know he has to be allowed to go and do his own thing but when he leaves my nagging...I mean my gentle reminders, he tends to pretend that diabetes doesn't exist any more.  That scares me.

His readings were perfect before he left.  Now you know that scares me as well.  You may be thinking that I am nuts but he was perfect here with testing, accurate bolusing and Mom knowing activity levels and bedtimes.  He is now out of my sight and beyond.  He will be up until all hours visiting.  He will be off in the country enjoying the fresh air.  His activity level will be different.  His carb counting will be different....my nerves!! Again, I am reminded by the stable force in my life that I will be in constant contact with my child.  I will be calling and texting. I will be asking for readings and making changes if needed.  He is only gone for six days.  He is only gone for six days...yes I am trying to calm myself.

He will be fine. He will amaze me.  He will be on his own, remember what he has been taught and will impress me completely.  I hope so.  I need to focus on the little bit of time I have with my oldest son and try to enjoy the ability to roll back over at 3am when I wake up but don't have to test for a few days.

Hi Hi Hi Merry Christmas?

Hi! Hi! Hi! Merry Christmas??? Well my son says that Christmas will bring changes.  I certainly hope so.  Life was coasting along okay.  Diabetes was just giving us its usual little bumps but all in all we were handling it alright.  Testing remained hit and miss but we had a few more hits than misses.  Diabetes must have realized that Christmas is fast approaching and we don't really have a lot of time for messing around with other "stuff".

We started out with a few highs here and there.  Perhaps some basal tweaking was in order.  Once that was done we ran into a new catastrophe--tubing breakage that went unnoticed for a few hours while at school.  He had spare sites at school but instead went through about 100 units of insulin filling tubing and correcting.  He was ketonic by the time he came home of course but quickly changed tubing, insulin and began to guzzle water. I was proud that he handle things on his own and took charge of his care so thoroughly (once he got home).  Thankfully he was a lot better within a few hours.

Next came the night time snack with no bolus to cover. He was high and felt ill during the night but quickly came down with a correction. Finally we just had highs.  Pancakes are evil and lead to highs. Growing also leads to highs.  Pancakes we can extended bolus for.  Growing is going to take a bit more work. The shirt I bought him during the summer on our vacation is now too tight.  The running shoes he had for school no longer fit.  The child I looked down on, now looks me in the eyes. This growth thing is going to take some serious insulin to cope with.

Its funny, when my oldest son would grow I would just hate to see my baby getting so big and my wallet would hate to see me having to buy new clothes so quickly.  With my younger son, again, I can't believe how quickly he is growing, clothing him is not cheap, but we also have the added grey hairs of trying to guess at basal and bolus rates.

Life can't be simple when diabetes moves in.  Of course these little quirks in otherwise, decent blood glucose levels are occurring in the month before we go and have another A1c done.  We were going to have this one in a much better range.  I am not as hopeful anymore.  We now have errors, puberty, and Christmas holidays all to mess with life. 

Last night I thought how much simpler things were when I had full control.  I fed him.  I tested him. I bolused for his food. I logged.  It was a lot of work but he didn't eat around the clock like he does now.  I could keep readings in range.  Life was simple.  Now he does things on his own. He can cook.  He eats enough for six small children and he doesn't need Mom around at all functions.  He does his own WAG for carb counting (and usually he is pretty good at it). Mom sits in the background as the constant voice of "Test. Bolus. Log." 

Somehow we will make it through the holidays.  We will survive the results of another diabetes report card (aka the A1c results).  We hopefully will even survive puberty!

May your house be filled with love, laughter and great blood sugar readings this holiday season! And the best present of all? Let's hope that Diabetes takes a permanent vacation soon from all of our lives! Merry Christmas!

Mere Mortals

I roll over wanting to just cuddle in and enjoy the warmth and coziness of our bed. As I roll, I glance at the clock and see that it is 4:30am.  I had better get up and test my son.  I don't want to move.  I am so very comfortable.  That doesn't matter. Out of bed I get.  I stumble in the dark, trying not to disturb my fiance and not fall into any of the bedroom furniture. 

Housecoat on, I head into my son's room.  Again I navigate in the dark to find the lamp and his testing supplies.  I find his glucometer close to his XBox and prepare the device for a test.  During the process I am praying for a good reading but the meter tells me otherwise.  He is high.  Crap! Okay, new cartridge and all, let's just hope its the high fat lunch still messing with him.  Correct and head back to my bed. I will be up again soon so I don't worry too much.

Less than four hours later I am up.  He has no school so he continues to sleep.  I take my time and cater to my own needs before creeping into his bedroom to do a morning test.  With some guilt, I head to his room about twenty minutes later.  I go through the same routine and test his blood once again.  He is still high...higher actually. Dang! Not happy. 

I grab his pump but before I can input a correction I see "delivery stopped". What the?????
How long has his pump been off for?? What happened? How did he sleep through the alarms? How did I sleep through the alarms? When the heck am I supposed to sleep??

I get the pump to restart and then began to figure out where the history is.  My son can get his pump to do almost anything but Mom doesn't use it as often any more so it takes me a bit longer.  I find the history and about 2 minutes after I bolused the 4am correction.  A blockage was detected and the pump shut down! More Mommy guilt. Did I really crash that fast last night? What is wrong with me? How did I miss this?

Thankfully the pump is working fine now, site is good and child is okay. He said he felt a little ill earlier this morning but now is up and being his usual nutty self.

I have been dragging myself out of bed at the wee hours for more years now than I can count. Lately I wake up wondering why? Why do I have to do this? Can we please have a break? Today reaffirmed why I have to do it but when am I supposed to sleep? How am I supposed to be chipper and ready to deal with the rest of my life when I am dragging my butt from broken rest?

Oh well, enough of the whine and cheese party.  This is our life.  I swore once that I would do anything as long as my son was alive and I still stand by that.  No one told us life would be easy but a bit of good, guilt-free sleep would be nice now and then.

Diabetes isn't enough?? I have to deal with teen-itis as well?

The holidays are quickly creeping upon us and my brain is about to explode.  Life continues.  There is never enough time in the day and I am so grateful to have a man in my life who is getting Christmas dealt with around me. Our yard looks great, I am getting things slowly organized inside, and as I dawdle along he is busy putting things up around me.

So why is my brain ready to pop its last wire? As always there is a tonne of things to do each day and never enough time.  Log books have fallen behind.  Blood glucose tests have been missed.  Highs are happening...oops so are lows and in the midst of all that? Well I have not one but TWO teen aged boys.  I am too young for this stress.

You see, my oldest son does not have diabetes.  I have spent over ten years focusing on diabetes and in the past four years, dealing with some teen issues now and then.  My son thinks he is perfect but he has had a few teen moments that have added to my steadily growing crop of white hairs (yes Mom, my hair too is going white not grey).  He will soon be legal to drive and that scares me.  Teen boys behind the wheel, showing off for their friends.  Car crashes, alcohol use, drugs, girls...YIKES! but he doesn't have diabetes so that is my only worry with him.

My youngest son however has diabetes.  We battle over log books, testing, bolusing, etc.  I worry about highs and lows.  I worry when he is away if he is testing. I worry when he is at school because I don't know if he is taking care of himself. I worry about complications when he is a young man.  Now that he is getting older, we are starting to have to throw in the same other issues I dealt with previously in my first child.  Isn't it enough to have to deal with diabetes but now I have attitude and teen wings to have to deal with?

I have to say that attitude has never been a prolonged problem with my boys. Grades have been a lifelong issue but you can work diabetes into the mix there.  "Yes, you need to study more and see? If you had been logging and testing we would have had you in range and you would have more easily understood what was being taught." He says he gets it and he needs to change but he is a teen. He is smart. He thinks he knows what Mom wants to hear. The talk is cheap.

The latest hurdle is the teen need for power and to run with the big boys and their toys.  Images that haunted me with child #1 are flying back with a vengeance with child #2.  I may be the major caregiver when it comes to diabetes but I am thankful to have someone in my life now who can help me drive down this road called adolescence.  The diabetes road has me used to the nausea that comes from its unexpected turns and twists.  I cry, I get frustrated, but I know that I am doing my best to keep him safe. The teen road has some familiar bends but losing my stomach around certain corners leaves me counting my blessings to now be driving with someone who can take those corners with greater expertise. The teen road has too many blind turns where I have no control, no say, and no ability to protect.  Its the hardest part of being a mother for me.  Dealing with the stuff that I have no control over.

Even with diabetes, my control is so much less now. I can't control his eating. I can't control his testing. He is becoming independent and that may kill me yet.

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! 

Halloween..then and now

I recently was given the opportunity to read a post from D-Blog Mom on dealing with Halloween treats and diabetes.  It was great and brought back memories for me.

My son is no longer doing the trick or treating thing.  This is actually his first year of "retirement".  He has decided that since he no longer knows the neighbourhood, its time to hang up his treat bag.

I remember back when Halloween was a time of fear.  We were on injections by the time my son started trick or treating and it was horrible.  We had to eat first before he could go out or bring him a meal with us (in our old neighbourhood, younger kids tended to go out early and therefore were home safe and sound before it got dark).  There was a lot of testing and him drooling over the candy unless he was low. Back in those days, I had to convince my children to go to more than a handful of houses.  They were never really into candy and were bored quickly.

As my son reached school age, I dreaded Halloween parties, but as D-Mom suggested, I used to go to all of the parties.  I wasn't the only parent there.  It was a bit of an event at my children's schools and many parents arrived in costume.  In our case, all treats were kept off to the side to be eaten later.  Cupcakes were only eaten if it was snack time or kept for lunch. 

Oh I am glad those days are behind us.  When my son went on an insulin pump, things became a bit easier.  He could eat his Halloween treats from school when he wanted (within reason) and we went door to door when we wanted to.  At that point, I began to enjoy Halloween a little more. He could be like a normal kid and eat treats on the run.  Lows were not a worry because we had a pillow case full of treats! Yes, as my children aged I no longer dragged them to one more house but wondered if they were ever coming home! We used cell phones and checked readings on a regular basis.  The downside was all of that walking and activity meant that I sat up most of the night waiting for him to crash.  It would happen but he enjoyed so it was worth it.  Yes I know I could have adjusted basal rates, and over time I did but things would usually still happen...the price for fun when living with diabetes and not always being the perfect pancreas.

This year my son has spent his time getting ready to scare little kids both at school and at home.  He has stayed after school to create the perfect haunted classroom for the younger students in school today.  He decorated the house with spiders, skulls and other ghoulish items.  He had me run out of purchase a bleeding mask to complete the effect.  He is a little depressed to think that he will not bring home a pillow case filled with treats on the 31st but I have no doubt he will have enough stuff anyways.  There is also always that chance that he will be convinced to go out one last time when Halloween actually arrives. The irony of his desire to fill a pillow case is that after all of these years, he still does not eat a quarter of what he collects!  Treats have always been split with the family.  Our waist lines say that no treats this year would be a good thing...our minds hope we have some left over treats on Monday :) Have a safe and happy Halloween everyone!

Is Diabetes More Deadly than ever?

Yesterday I heard of another child who died because of Type 1 diabetes.  She was thirteen years old--the age of my own son.  She had Type 1 diabetes--like my son.  She had parents who loved her and who were diligent in her diabetes care but she died anyway.  That is every parent's greatest fear.  She had hopes and dreams.  She wanted to die an old woman with a book on her chest...sadly she died before she became old or had any experience as a woman. It is truly heartbreaking.

This is not the first death from diabetes that we have heard of in just this past year.  This is not the first time that I have heard of someone so young being taken by this disease. This death led me down a path of contemplation.  Why were so many people dying? Was this something new? Did we lose children to this disease before? Had we traded rapid insulin and better technology for a higher chance of death?

Those of us who live with the unwanted houseguest called "Diabetes", know that with tight control which promises prolonged health is the risk of severe hypoglycemia and death. Its a risk most of us take with some caution.  We try to keep the A1c down.  We work to maintain "normal" blood glucose readings at the risk of becoming hypoglycemic unaware.  Its a scary balance.  Night is our enemy as we fear, as these parents did, of waking up to our children "Dead in Bed".

I put the question out to many parents yesterday--was diabetes more deadly now because of the advances we have or do we hear about death more because of social networking and our reliance on the internet?

The answers were mixed.  Many had a new fear of this age of puberty (the last number of deaths were young teens).  Were teens more suseptible because of insulin needs that changed on a daily basis with incredible swings?  Did adolescence and its rebellion breed a greater risk of deadly behaviors in children with diabetes?

Others felt that technology was a good thing.  We were not seeing as many complications as we once did but they noted that try as we might, we are just not pancreases.  We could not do enough to mimick Mother Nature.  We were not God and could not anticipate all of the body's needs.  Despite our best efforts, some form of complications or worse were likely to happen at one point. That was terrifying.

We have children and we realize a need to protect them.  Many are devistated by the diabetes diagnosis because they feel that they have failed to protect their child/children.  After diagnosis, the need to protect becomes even stronger because we failed the first time around.  Now it becomes our job to keep their bodies healthy and strong. We fight to make sure that they have a normal life--as normal as it is to live with syringes, pumps, glucometers, and glucose tablets with you 24/7.  To read of a death just shows us that our best just may not be enough.

Yes, I realize that my choice of pronouns has changed from someone else to me. I have always felt it was my job to protect my children and yet my son almost died because of diabetes and misdiagnosis.  It is now my job to turn him over a healthy body when he leaves my care.  Its a difficult job especially since he is at an age when he is looking for his own independence.  I, like many before me, face the challenge of trying to teach him to care for himself and to be there to pick him up and dust him off when he makes mistakes. Death however makes us want to hold them close forever and never sleep again. We want to be in their lives 24/7 and keep them safe.

So to get back to my original question--has diabetes become more deadly? Probably not but it is still no less scary and no less deadly.  Diabetes DOES kill despite those who think otherwise.  The fear is real and, while possibly magnified by the internet, the danger is still present. The answer? We need a cure.  Its sadly that simple. Until there is a cure, we will continue to hover and pray.  We will lean on each other in a way not available to generations before.  We will learn from each other and move forward but we will never forget those that we have lost....

For Eilish, for Paul, and for too many others.

In the month of November, http://www.diabetesadvocacy.com/ is planning on creating a memorial to those we have lost.  We will place names and/or photos of those who fought diabetes but are no longer with us. If you know someone who has lost their battle with diabetes, please email their name and/or a picture to us at advocacy@diabetesadvocacy.com and let people know how deadly diabetes really is.

Thank you.

Zombies Really are Scary!

I woke up unusually refreshed and knowing that it was time to test.  I glanced at the clock at saw that it was 2am as I headed out across the hall.  I was shocked when I saw that in the next room was a young man sitting up in his bed. 

"What are you doing awake?" 
No response.  He was staring at the blinking blue light on the floor coming from his video game system.

"What are you watching?"
Again, no response.

Okay, what the heck is going on here? I grabbed the meter from his dresser and prepared for the worst. 

He finally mumbled something unintelligible and laid down.

I tried to breathe.  I grabbed his hand and felt that it was cold and damp.  That could not be good. As I lanced his finger, the blood was slow to come out.  In our world that is a sure sign that he is low.  When he is high the blood pours out like water but when he's low it seems more thick and hard to test.

I waited those five seconds for the reading. (Have I mentioned how much I love the improved technology over the past ten years?)  He was low.  Off to get the juice. The straw touched his lips and he began to drink.  Thank heavens for small miracles. 

I headed off to read for 15 minutes or so while waiting to see if he would go up.  He did but not enough for me to feel comfortable.  A little more sugar before my sleep. 

The next morning he remembered nothing. To him it was funny...and in an odd way it was.  He was like something from a Halloween horror movie and in any other context it might have been amusing.  Since we were dealing with diabetes and a low though I didn't find it quite as amusing. 

Defining Yourself

My brain is ready to explode after too long of drawing a complete blank.  Years ago my son and I were asked to participate in a report on diabetes care here in Canada.  It was called "The Serious Face of Diabetes in Canada"  and was prepared by the Canadian Diabetes Association. At that time we had a photographer come out and she took pictures in the summer. We took pictures everywhere but there were no smiles allowed. This was serious business.  Some of the pictures turned out great and they took the one they liked along with our story to use in the report.

Fast forward to this summer and they called to ask to do a follow up.  I was in the middle of moving but felt it was important for us to be a part of this so I said yes, we would be involved again.  The follow up story was done. It wasn't perfect but I was too stressed with other things to be picky (I am sure the author was very grateful for that!).  Because of their scheduling, pictures were not arranged until a few weeks ago.  At that point I was sent a release form and asked to come up with a photo that defined my child.  It could be him in sports, with his pump, in his favorite shirt--anything that defined him.

Being me, I missed reading the part that said, "a picture that defines your son".  I was ready for the photographer to chose a site, take some pictures, and life would go on.  Wrong.  He called, I put him off for a bit because my brain was still not working well on that task.  He is supposed to call back this week and set up a time and place.  I am still at a loss.

My son is not a swimmer, hockey player, race car driver, piano player or Indian chief.  He is 13.  He plays sports in school. He is bilingual.  He takes his frustrations out on his new kickboxing bag.  He lifts his dumb bells while playing XBox and texting his friends.  In other words, he is a typical thirteen year old. 

My son is not defined by his diabetes.  His diabetes is just part of him.  Testing is a necessary evil that he avoids.  His pump is his best friend but their relationship is a quiet one.  Its always with him, close by his side but he tends to keep it tucked out of sight.  He will point out another person with diabetes in a room but will not engage them in a conversation.  Diabetes isn't who he is, its just something that he lives with.

I think that is a healthy thing but it really doesn't help me with this photo session. Maybe we should just get pictures of him, with his dog on his lap, texting me...its not like that doesn't happen a lot in our life. Wish us luck! When asked for his input, my son's response was "Idk".  Yep, him and his cell phone may well be the picture of choice!

Can Diabetes please move to Pluto so we can have some peace?

I am tired. I am done. I would like Diabetes to kindly pack its bags and take the first space shuttle to Pluto.  It can start walking now and meet it when the shuttle is leaving.  I had suggested it could go to Mars, but my friend Pam suggested that a non-planet such as Pluto would be much more fitting. Who was I to argue?

I am just a tired Mom of a joyous teen with diabetes.  Don't get me wrong, my kid could be way worse.  He has an attitude twenty times his size when he is high but we will keep him for most of the rest of the time. 

Yesterday was day one of the new regime...Mom texting and son texting readings back.  It was a partial success. First reading came in without prompting. I was shocked, amazed and impressed.  Lunch time arrived and no word.  I texted, and I texted, and I texted.  Finally after school I got a reply! I was not happy.  On the upside, he had remembered to do all of his tests. I said I was happy with that. I had data to work with.

He came home high but after some activity and insulin, he was back to his human self.  We were looking forward to a positive day two.  I told him that if he sent me the readings, which I would still verify when he got home, then I would not text him.  He thought that was great and a new deal with struck.

It was soon time for me to head to bed so I checked on my child--readings were good and he was soon to fall asleep himself.  I had been reading and was about to take my book to bed with me when I changed my mind and put it on the kitchen table.  The sane part of me said that I would probably read a bit with my tea in the morning. The skeptical part of me said "Well, if he is low during the night I won't have to hunt around for my book while I am waiting for him to come up!"  I quickly brushed away the skeptic's comments and crawled into my cozy bed.

I had just fallen asleep it seemed when Mother Nature called. How could I need to use the washroom already? It was only 1am.  Should I do a test? I would probably wake at around 3 or 4 anyway.  I was up though so perhaps it was best to go ahead and test while I was at it. Extra data is always a good thing and with that I headed in to do my Mom job.

I looked at the meter after the reading registered and shook my head.  What the heck? I know that everything happens for a reason but...what the heck? He was low.  How did that happen? Did I really know it was going to happen and that's why my book was ready for me? How does my body always seem to know when to wake up? When will my son's body do this for us?

So many questions....and so much time to ponder and come up with more. It took me over an hour to get him in a range that allowed me to sleep.  On the upside, I got a lot of my book read. On the downside, I tossed and turned for another hour or two before I could fall asleep. I was exhausted when I got up to get my son off to school. I wanted nothing more than sleep. Real, honest to goodness sleep. Was that too much to ask for? Diabetes hadn't gone to Pluto but it had gone to school with my child so maybe it was possible? Nope.  After less than an hour, despite my fiance telling me I really should just stay in bed and sleep, I was up with a great desire to sleep but no ability. 

Imagine how patient that made me for day 2 of the new regime? The first reading arrived.  He was high again. Crap! I waited for the next reading, and I waited. I texted him to remind him. Nothing. I texted him and told him to test period. Nothing.  Finally I got a reply. "I forgot to test. I will test before and after gym though."  He is supposed to test before and after gym! Ugh! When he got home there was no yelling.  I was frustrated and tired. What the heck were we going to do? He swore he would do better and hey, he did remember to test before gym.  Okay, I gave him that.

It will soon be bedtime for me again. I am truly hoping I can get some sleep. Basal rates are changed.  Carb to insulin ratios have been altered.  I need sleep.  There is only so much foundation that one can put under their eyes without looking like they are practicing putting on their Halloween make up! It would really be so much easier if Diabetes would kindly move to Pluto.