Thursday, March 31, 2011

Does Diabetes make us healthy?

I have recently read blog posts about people getting healthy and in shape. I have begun to notice a term "sweatbetes".  I am not into much of the new lingo and I admit to being pretty slack on the entire fitness scene.  We try to get a walk in on a regular basis. When the sun comes out, there is a walking trail that we try to visit on a semi-regular basis.  My son plays hockey with his friends now and then but is not a fitness guru or currently concerned about his abs.

We are working on trying to loose a bit of weight in the house but have always maintained pretty healthy eating habits.  My children love fruit.  They eat little junk (unlike their mother).  I try to bake with less sugar, apple sauce instead of margarine, and use flax or whole wheat flour whenever possible.

Do I do this on purpose? Am I trying to teach my sons to eat healthy? Am I trying to keep them off the obesity track? I guess in a way I am.  I have always felt it was important for them to eat right. Their mother has a sweet tooth, I really wanted to help them avoid that. 

Did diabetes impact this decision? I don't think so.  I gave my boys plenty of fresh fruits and vegetables long before diabetes.  I have tried to modify my cooking to have more grains and less preservatives for years.

When I grew up, I saw people struggle with their weight. They made me very conscious of how difficult it can be if you end up having to deal with obesity.  I have tried to make sure that my children were not weight conscious and respectful of people of all sizes.  They have been perfect in my eyes no matter what their weight. I have also worked to try to show them healthy options.  We have had chicken nuggets but with age, my children would rather have a good salad.  We have cakes but they would often prefer an extra helping of strawberries. 

Did I make these choices because of diabetes? No.  Did diabetes mean that I was more concerned than ever? Yes.  In our family, we know that diabetes increase the risk of heart problems.  We know that good cholesterol levels, even in my youngest son, are vital.  We work to keep them in check and so far we are winning.

Tuesday, March 29, 2011

To log or not to log...

To log or not to log, that was the question. I am a die hard logger--not in the tree chopping sense but in the tree killing sense.  I need to see data on paper. I need to see readings, boluses, meals, and activity.  I cannot just download the meter and down load the pump.  I want to see everything altogether.

My son on the other hand has no interest in logging. It is a chore worse than making his bed or picking up his dead socks off of the floor. I nag.  Eventually he fills out the book. He does it for a day or two. I get excited that he may have turned over a new leaf. I relax. Time passes, he ignores the book. I nag and so the cycle goes. 

This weekend it all came to a head. Sitting up at 3am, I decided to look at his log book.There was only one entry out of five days.  I then proceeded to remove the Internet access to his Xbox.  I was tired of asking him to do things (not just the log book) and getting no response. It was time to get his attention...and I did!

After a few hours of sleep, I began to wonder if this was a battle that I should be waging. He is testing. He is bolusing. Does logging really matter? Of course it does!! but that's just me.  It turns out that most people in the diabetes community seem to side with my son.  They feel that the occasional download of meters and pumps is fine and paper is a waste of their time.  I spent the rest of the day wondering what would work for us. 

I know that one day he will take over everything and a log book will never touch his hands. I also know that sitting with him, looking over the log helps us to learn.  I would love a program that had everything I needed.  One that integrated the pump and the meter AND food AND activity or errors.  I have not found one and if I did, would I use it?

I spent the better part of a day thinking, wondering, pondering.  People had made some great points but what was right for us? That night we sat down with his paper log.  I made comments with my son beside me.  I quizzed him on what to do and why.  We made a few changes.  As I closed up the book, I knew what was right for us. 

The log book would stay.  Mom would write in it just as much as the child (or more).  She would ask for his help but would take over the bulk of it. It was her tool.  She would use it to teach and if he decided to log when on his own?  Well it would be up to him.  There will be many more tools available by then and I am sure that being a child of his generation, he will embrace new technology. Being just an old mom, I will stick with the paper for the time being until someone creates my ultimate diabetes trending tool.

Monday, March 28, 2011

The new rule for all hypos.

"You were low at 2:30 last night but you didn't retest until an hour later."
"It was an hour? It seemed like it was just a few minutes later."
"It was an hour and twice this week when you have been low during the night, you dropped AFTER I treated the first low."
"I hate retesting. I never remember.  Lows should not be allowed to happen at that time of night."
"I wish! Tell that one to your body!"
"I will. Lows should only happen at 6pm."
"6pm works for me."
"Yeah, it could be earlier but then it would be 3 and that would be at school so 6pm will do."

Later same night...

"I think I am low."
"How low are you?"
"2.8" (50)
"Get some juice NOW. At least you timed this one better but its not 6pm its 10."
"I know. I have to fix that. Lows are only allowed to happen at 6pm."

After a few minutes I saw him testing again. "Its too early to retest."
"I'm sure its been time."
"Wait a bit."
All was fine...for the moment.

Friday, March 25, 2011

Do you not understand a "snow day"??

I asked my son for his meter last night.  As I looked through it I saw, high, high, high, no test, no test, and yet another high reading.  I turned to him and asked if he somehow missed the pattern here?

"Did you do that site change I asked you to do?"
"No.  I can't put it in my stomach on my own."
"Well I have been home for how many hours to help you and there were the past two days that it should have been done on."

Eventually we get it all straight, complete with a "Common Mom, say it."  Say what? He proceeds to say his name with drawn out exaggeration mimicking me when he has managed to mess up in his care. I tried not to laugh and reminded him that he could have avoided all of this.

Site changed, readings back down in range, and I was off to bed! I woke up at 2:30am and of course thought "Just one more hour.  PLEASE!!??"  I rationalized that he had been high lately and he probably would be okay tonight.  One more hour would not hurt right? The little angel on my other shoulder reminded me that there was a reason that I woke up and I had better haul that lazy butt of mine out of bed NOW!

I stumbled my way straight into his room. I did not stop to use the washroom or get distracted in any other way. I was a Mom on a mission--although a slightly foggy one.  I found his kit, lanced his finger and waited the lovely 5 seconds (after having to wait 30 seconds for results, you have no idea how much pleasure that still gives me especially in the wee hours of the morning!).  The result...WHAT THE HECK HAPPENED???  Holy crap.  Grab the juice.  This boy was low! Now not the LO low but the "way lower than we normally experience low" and the "way too low for 2:30am especially with a mom who was going to let it slide" low.  I filled a large glass of juice, found a straw and touched his lips.  He began sucking and the mommy guilt slowly tried to grab hold.

I should have known! He had been a little low around this time earlier in the week.  He had gone with a bad site for who knows how long.  Being a bad mom, I had not been on top of when his site change was due nor did I make sure it was done on time.  He was using his stomach--which means awesome absorption of insulin.  This was all a recipe for a low--especially since I had upped his basal rates during that time in reaction to the previous highs.  Ugh! What had I been thinking? Oh well, it was time to read my book and wait. 

When the required time was up, I went to check on my son and see if he was okay and I was good to go to bed.  Nope! He was lower still.  Insert a lot of very colorful words at this point.  Holy crap! More juice, grab the bottle of glucose tablets.  Feed him a few tablets.  Add a bit of juice to remove the tablet "hangover" he complains of after feeding them to him during a nighttime hypo.  I try not to think at all about the fact that I didn't want to get up.  I focus on the fact that I did get up and I really did want to be reading my book at 3am.  Its an okay book.  What else would I rather be doing? Okay, I won't answer that and read for a few more minutes. The second retest and we are good to go.  He was heading up and I was heading to bed once again grateful to that little voice that kicks my sorry butt out of bed that night. 

As daylight began to think about appearing, I found myself awake again.  I could hear the storm that was forecast and was positive that it would be a snow day.  I waited to see if we would get that 6am phone call from the school's automated phone system.  Nothing.  I really didn't want to get out of bed. I knew that there was going to be no school.  Finally I saw the flash of red on my phone and knew that it was a message from the school.  BINGO! No school for today! Oh yeah! Back to sleep for me! Happy squirm in bed!
 Perhaps I should test him first just in case, I thought.  The bed was really warm though.  Did I really want to move and disturb anyone else? Look what happened last night. Okay, I got out of bed and guess what? Yes, we were back to being low.  He was only 3.1(55) this time.  Still not good but not as bad as during the night. More glucose and juice but this time I crawled back in my bed.  For some reason, I have this delusion that after daylight, he will wake if low and I will be off the hook.  I waited in bed, trying to fall back to sleep but no way.  I got up and retested.  Un-freakin-believable!! He was lower than he started! Super crap! Doesn't Diabetes realize that this is a "SNOW" in a sleep in day? This is so not supposed to happen. More juice, more tablets and eventually I see an 8.6(155) and I am ready to hunker down and enjoy some extra sleep for our extra long weekend. 

Just as I cuddled in, Larry could take no more.  I had been up a million times and he was getting up for breakfast. I should have gotten up too but decide to try and hang in a little longer. It didn't work. Soon we were both up, and my son? Well he slept until noon.  He is sick so Mom gave him a break.  I just wish Diabetes was as nice as I am!  

Thursday, March 24, 2011

The Forgotten Child

"Mom, would you do all of this stuff if I had some disease?"
"Absolutely!! I love you both equally and if there was something that you had to deal with, I would do everything in my power to make it better for you as well.  I pray you never have diabetes or anything else but I will always be there for you no matter what."

About two years after my youngest son's diagnosis, my oldest child and I had the above conversation. It broke my heart that he could feel that perhaps he was not as important.  He knew what his brother had gone through and never complained about special treatment. He spent the night in the ICU with the rest of us when we didn't know if his brother would live.  He has made some of his own sacrifices in the name of diabetes. According to him, he is "The Unknown Child".  He is the forgotten one. He is the one that people don't hear about because he does not have diabetes.

He is far from forgotten and I have done my best to ensure that he realizes that. I do my best to be a part of all of the things that are important to him. Equally, he was extremely important in his brother's diabetes care over the years.  He was my youngest son's lifeline in school for at least five years.  Teachers would often turn to him to ask questions about his brother's care rather than calling me.  He became an expert in carb counting and knew many of the ins and outs of diabetes care.  In fact, when he moved on to another school, my youngest son got a little nervous and had a bit of a rough time getting used to not having him to rely on.

Despite the fact that articles were not written featuring his face, my oldest son became involved in the diabetes community as well.  Siblings of a child with diabetes are very special in their own way.  The support that they offer is second to none. He has developed friendships with some of the wonderful people that we have met over the years.  When we went to our first Friends for Life conference, he disappeared almost immediately after our arrival.  He had friends to hang out with. I gave him a room key and saw him during meals.  After a day spent at Disney with this amazing group, he came home with tales of carrying four and five meters for other guys while they went on rides and had his pockets filled with strips and other diabetes "gear". 

Now he has had his times when he has complained that his younger brother gets everything. He thinks his sibling gets all the attention and my poor little forgotten child gets none.  On the other hand, his younger brother has said the same thing so I am pretty sure that both of them of are full of it and just trying to get their own way at the time.

Today is my oldest son's seventeenth birthday.  I have no idea where the time went or how I could possibly be the mother of a child that age.  I can still picture him in my arms in the hospital on the day he was born. I never wanted to let him go.  Now he is seventeen and I have had to let go.  He is in another part of our province finishing high school.  He has a drivers licence and a girlfriend. He is an excellent student and a wonderful young man. We have had teen issues to deal with...and probably will have a few more, but all in all, I am so very proud of my son. He is growing into an incredible young man. 

Happy birthday my far from "forgotten" one!!

Wednesday, March 23, 2011

A stroll down memory lane

It must be spring.  There is still snow flying around outside and my winter boots were on my feet today but I have noticed a restlessness in the air.  I was reading a blog in which the author felt that maybe she was not doing enough in the diabetes community despite raising awareness and entertaining many of us. 

I have had that same feeling in the pit of my stomach.  That question of what are you doing and more importantly--how do you do it better?  I have yet to have any great epiphanies but it did motivate me to start a new project. I decided to "tweak" my website. I am seriously thinking about completely rebuilding and cleaning up the current format.  I found a search engine to make looking through the site that much easier but I still have to decide what my spring website look should be.  In the meantime, I decided that a movie of some of our greatest memories would be in order for the home page

I began a journey back in time as I looked through old photos.  I truly hate Diabetes with a capital H but the warm memories I found in the pictures really helped to ease the pain. I found pictures of a trip we went on to New York.  Many of our online diabetes friends got together and we had a fabulous day at the beach.  There was no awkward time of getting to know one another.  We instantly had known each other for years and the day was amazing.  

I found pictures of our trip across Canada.  Again, there were photos of the many friends we met along our travels.  There was a barbeque in Ottawa, a night in the interior of B.C.  as well as introducing Rufus, the bear with diabetes, to many of our family members. 

As I dug around, I found the photos of our trip to Friends for Life in Florida.  I remember again, sitting down to drinks with "old" friends and having my son disappear with his pals to enjoy his vacation.  There was basketball and Disney World rides for him.  There was pump failure and great contacts for my other son and I.  We found out that the best place in the world to have a pump malfunction was at a CWD Friends for Life conference.  The friends and resources you will find are second to none!

I came across pictures from our Friends for Life Canada conferences and began to look forward to reconnecting with old friends again this summer.  There were walk photos and I remained amazed at the generosity and enthusiasm of so many amazing people.

I still don't know how I will tweak the site.  I still am working on getting the movie completed and online.  I have however had a day filled with smiles and wonderful memories.  Thanks to all of the great people in our lives who helped create these memories and so many more!

Thursday, March 17, 2011

Diabetes is 11 today OR Why won't it leave me alone?

Eleven years ago today, Diabetes announced that it had permanently moved into our lives. Its silent presence before that was masked and hidden. It appeared as the flu. The ER doctor called it an ear infection. I wondered if it was two year molars giving him a hard time. We were all wrong...dead wrong.

I have relived that day a million times over. I can see every second as if it was yesterday. I can still feel that lifeless little form that was my son laboring to breathe while resting in my arms and me praying that he would continue. Everything is vivid and detailed and yet so many years have passed.

We have moved from a meter that took a lifetime to tell us what was wrong and required a gallon of his precious blood to glucometers that give us a reading in five seconds and use only a pinhead amount of blood. We have gone from structured meals to a teen who permanently has his head in the refrigerator and "meal time" is every hour. We have gone from five injections per day to an infusion set change every couple of days. We have gone from a vial of insulin having to be thrown out after one month because we have not used it all and it has expired to using a vial of insulin easily in a week and looking for more to get him through.

Times have changed and we have moved forward. My son no longer has to be forced to eat but rather forced to slow down. I am no longer the only person in charge of his care--he now carries some of that responsibility. I am still the one up at all hours to test. Lows still keep me up for hours on end, forcing carbohydrates into his sleeping mouth. Highs are more common now as his body grows and hormones rage. Our fight to keep him healthy has never waned.

My son doesn't remember that day eleven years ago. He doesn't see it coming every year. He doesn't remember the weeks in the hospital. He doesn't remember the fight for his life. He doesn't remember not being injected. He doesn't remember not testing his blood. He doesn't remember not counting carbohydrates. He doesn't remember going anywhere without his meter. Yesterday I mentioned that Diabetes turns 11 today. He looked at me and simply asked, "Why doesn't it leave me alone?" I told him that I had kicked it out. I had given it its eviction notice. I had even moved and not provided it with a forwarding address but it would not take the hint. We are stuck with it I guess.

And so we make the most of it. We hate Diabetes. It remains the unwanted house guest from hell but we count our blessings. My son is alive! He is here to stress me in puberty. He is complication free to date and lives a "normal" life for the most part. We have made many wonderful friends because they sadly belong to our exclusive "club". We have helped others to learn about this disease and we keep teaching.

I will quietly remember this day eleven years ago. I will remember racing through a storm. I will remember my son being given twelve hours to live. I will remember how far we have come. I will reflect on the amazing young man he has become. I will be proud of how his brother has taken all of this in stride as well--how he looks out for him, how he treats him like a "normal" little brother--black eyes and all. I will focus on the blessings and move on to deal with year twelve.

11 years ago


Tuesday, March 15, 2011

Do my eyes deceive me?

Armed with a load of clothes, I head into the dreaded "boy cave" also known as my son's room.  As I enter, I can hear that the XBox is already up and running and conversations have begun--he has been home for at least 15 minutes so I should not be surprised, right? Imagine my surprise, however  when I see a black tv screen son with a pen in hand working on his log book!

After that brief minute when my heart skipped a beat or two I noticed that the screen was black because it was "loading game" but the log sheet was really out! He was actually going to fill it with real information! What was going on?

A quick look back on the last twenty-four hours brought immediate understanding. This was not a spontaneous move towards maturity and taking care of his diabetes.  This was the result of Mom telling him sternly (I really didn't even yell or completely lose it!) that all log sheets are to be completed on a timely basis with ALL required information provided OR the beloved XBox would be disabled until said son could do as he was asked.

Again, this was not met with exuberance and "Of course, Mom.  I apologize for being so slack lately." It was met with teen sized attitude.  In our house the attitude is met with relative silence of mouth but exagerated actions. This time, the exagerated actions caused him more problems than he had anticipated. 

In his grumpy mode, he ignored the fact that he was told to either leave the garbage on the front deck or in the garage. Using his teenage wisdom, he felt that the garbage was to go out at that moment--in extremely high winds and a snow storm, rather than the next morning before school.  The result? The door being blown off his hinges and a quiet hush coming over the house as Larry and I both pictured having to buy a new door in the morning.  We were not pleased but remained eerily calm. He knew he was in trouble.  Accidents happen but if he had ditched the attitude and listened...well we would still have a door attached to its frame!

Thankfully, in sunny conditions, the door was able to be repaired.  I sent my son a text to let him know that I would not have to take the price of a new door out of his hide.  The result...Mr. Perfect Diabetes Son who logs when he gets home. Big price to pay for compliance.  Hopefully we can maintain this without any repeat episodes of the door removal incident.

Monday, March 14, 2011

Fear is duct taped in the corner

The worst thing that diabetes has brought into my life is fear. 

Before diabetes, I knew worry. I worried before my boys were born if they didn't move enough.  After they were born, I worried about them stopping breathing.  As they grew, I worried about their development.  Before they went to school I worried about the quality of education they would receive and how, or if, it would limit their university possibilities.  As my oldest son reached puberty, I worried about alcohol use, then drugs, and of course--girls! When he got his drivers licence--well I still worry about him on the road. I worry about the other drivers. I worry about animals on the road.  I worry about him being away from me. I worry about him going away to university. Yes, all in all, long before diabetes, I knew how to worry. 

Diabetes brought in something completely different. It brought a new level to worry. It first brought pure terror.  My son was clinging to life when diagnosed and I prayed that he would live to breathe another day.  Each minute was excruciating as I thanked God he was still alive and hoped to see him get past this.

Once we settled into living with diabetes, terror gave way to fear and fear has never left. Fear diminishes but it is always with me.  

Quickly I learned to fear death--too much or too little insulin could mean the end of my child's life. 

I learned to fear my own actions--if I ran him too high I could hear small blood vessels closing up and I knew that it would be my fault if he had complications. (I have always felt that his body is my responsibility until he turns 18...after that I hope for the best)

I learned to fear sleep.  At nights he doesn't feel his lows and he could slip away from us.  Sleep was the enemy...and a treasure.  I hoped for readings that would allow me a small sense of security when I closed my eyes (hence my favorite number). 

I feared him being away from me more than ever.  Would the school understand how serious diabetes was? (Thankfully they have).  Would his friends understand why he can't play when low? Would he try to hide his diabetes and not test or bolus when away from me? Would people understand how serious diabetes was and support him when I couldn't?

I still have fears.  All of those fears that I have had for my children when they reach their teen years and want to spread out and stretch their wings are magnified when diabetes is thrown into the mix.  My son now goes off with friends, attends functions on his own, and communicates with me solely via cell phone. The other night he had dutifully turned off his phone during a movie.  When I went to pick him up and couldn't get in touch with him my heart stopped.  Not only was my son missing but what if he ran out of insulin? He was fine but yes, I can still worry!

Don't get me wrong.  I have learned not to let these fears rule my life.  They do not paralyze me. They do not stop my son from enjoying his life. They give me pause.  I give them respect.  They make me think.  They take away my breath now and then. They send me into the occasional pit of guilt but I have learned to cope. 

Just as Diabetes is the unwanted house guest that leaves their dirty socks laying around everywhere throughout your home, Fear is also always there.  Unlike Diabetes, I chose to ignore Fear for the most part. I try to keep Fear at bay.  Fear is kept taped to a chair, hidden in a corner, with duct tape over its mouth.  Every now and then the duct tape loosens and Fear can be heard, but I have learned to reapply the tape, try to ignore the Fear, and enjoy living the blessed life we have been given. 

Saturday, March 12, 2011

In 11 years what have I done? Well, I got a tattoo...

It was almost eleven years ago when we were told that my son had Type 1 diabetes and I recently wondered what have I done? When my son was first diagnosed and we knew that he would live, I remember thinking that this was what my life would be about.  Now, I wonder what have I done? Has it been enough?   Have I worked as hard as I could? Have I made a difference each year that we had lived with diabetes?

Yes, this is a bit of a feel-good post.  It is a bit of a vain post all about ME.  So, what have I done? I have ruffled feathers.  I have whined. I have complained. I have been pushy. I have helped to change a few things for people with diabetes. And of course...I got a tattoo.

I have survived life with diabetes for over a decade and my son is thankfully alive to tell the tale. There were times I that I wondered if either one of us would make it.  In the early days he would hoard food in his cheek, swallowing nothing and dragging meals on for hour.  He would then vomit.  He would bring me to tears as I tried to get him to drink juice to ward off the low he was experiencing while hanging over the toilet throwing up and passing out.  I didn't know how we would make it through another day let alone a few thousand more days but we did....and I got a tattoo to prove it.

I shared Rufus the bear with diabetes with children on the west coast of our province and on the west coast of my country.  I "met" incredible friends online who helped me to get past the above mentioned food battles and so much more.  I connected with amazing people in real life who met with me for regular "therapy" sessions which included great conversation, good food and a few drinks...and eventually I got a tattoo.

I tackled the federal government and won.  I saw that the Disability Tax Credit was not fair and had the issue brought up before a parliamentary committee. I was blessed with an amazing mentor who guided me and helped me motivate others to ask the Federal government for further change.  A bill of $41million was the projected cost, but we now see children up to 14 years of age given the Disability Tax Credit, and adults who intensively manage their diabetes also qualify without hassle...and did I mention that I got a tattoo?

My son got older and was soon heading off to school.  I began to worry about protecting other children with diabetes.  What happens to those students who's parents can't speak for them? How do we protect all of our children? I began speaking to anyone who would listen.  I wrote letters. I suggested policies. I educated educators. I educated parents.  I badgered provincial members of parliament. I wish I could say that I won and all of our kids are protected, but we have seen change.  I have worked with the CDA to change their guidelines.  I have been quoted by boards who use my policy as their guide.  I have been asked to meet with provincial policy makers to adjust how they deal with children with diabetes in their schools. Progress is slow but it is being made...and of course there was the tattoo.

Somewhere along the way I tackled something I had never done before. I created a website. It allowed me a platform to do a lot of the things I mentioned already. It also allowed me to interact with a lot more people than I normally would. This led to a challenge. 

Each year in November I worked to created heightened awareness of diabetes.  I wrote letters about our experience. I created a booklet on the "Faces of Diabetes".  One year I wondered out loud what to do next.  The answer I was given was get a tattoo. The gauntlet was laid down by a woman in her 70s who claimed that she had done it so what was my problem? A number of other people said that they were up for the challenge. The plan was to get a tattoo relating to diabetes done in November.  Media attention to what you had done would be vital.  Pictures were a must and we would share.  The result was I got a tattoo and created one of my most visited and amazing web tattoo page

The tattoo created some controversy for me as in my exuberance, I shouted what I had done from the roof tops.  Some people did not appreciate my enthusiasm.  That was okay.  I grew.  Things changed but I had a tattoo.  Yes its my only tattoo. I had thought of getting one years ago but it didn't happen.  When the challenge was made, I contacted an artist and he created something that I love--two entwined hearts.  I have two boys.  Their names were placed in each heart.  Their birthstone color was added and of course we had to have a diabetes awareness ribbon and blood. 

My boys sit on my left shoulder, close to my heart.  I have told them that when I am old, senile and walking the halls of the home in a nightdress with the back hanging out, they will not be able to say that I am their mother.  Their names are on my back and they will have to claim me.

So I guess I have made a few contributions in eleven years.  I hope and pray that I have (and will continue) been able to give back even half as much as I have been given (that list is for another post so come back and read again!).  In the meantime, well I have a tattoo that shows that diabetes has not beaten us..and never will!!

Thursday, March 10, 2011

My favorite number

Everyone always asks you "what is your favorite number?"  For whatever reason, mine has always been six.  Today I realized how much I truly love that number.

Last night I tested my son at 2:30am.  I had changed his basal rate was I was expecting him to be either in range or high.  I was figuring on the high because we only seem to have readings fall into one category or the other--high or low. I was happy to see that he was 6mmol (100) and headed back to bed with a smile on my face.

This morning I began to think about numbers.  A high (anything over 12 in my world) causes a groan--hormones are raging or we miscalculated a bolus and I am a bad pancreas. A higher high--something over 16 (290) causes a slightly larger reaction--CRAP! What is wrong? Did we forget a bolus? Is the site in? Is the insulin bad? Is there air in the tubing? Will this correction work or should I inject? Crap!

There is also the dreaded non-number.  You know, when the meter simply says "HI" and you know that its not being friendly and wanting to strike up a conversation.  That is the reading that instantly gets the "Oh SH!#" response followed by the injection, ketone meter, jug of water, new site, new insulin and a lot more cursing wondering where I went wrong. I am now a colossal failure as a pancreas and have to get serious FAST.

On the other side of the coin, we have the number 5. I hate a five at night (90 for my American friends).  A five is a number that is close to six but far enough away that it could easily turn into a four...or less.  A five keeps me awake at night. I wonder which way it will go.  Will it make it up to my beloved six or will it tank to an unwanted two?

Fours are much more simplistic.  Add a small amount of sugar.  Its too close to call so I assume we are heading to a low.  Add a tablet or a bit of chocolate milk and rest assured that a crisis has been averted.  Well don't rest too soundly because I have been wrong before and he could still tank but its a start.

Threes are a two tiered panic.  The first three I see at night, I respond with "crap"! I have to be a bit awake and somehow get glucose into my child.  The second three (or worse) means I am wide awake and cursing the arrival of diabetes into our lives.  I then know that this will be a long night and I will be tortured by its memory long after he has climbed back up to my special number--six.

A two or one? Well they instantly put me in five star, full fledged, try not to panic, but What The...??? freak-out mode.  These numbers have me clambering for glucose and praying I don't need the glucagon.  These numbers have me watching the clock praying for the next reading to be so much better.

Yes, six is a wonderful number. Its peaceful.  It means I have been a good pancreas.  It has a serene sense to it.  Even a 6 in an A1c is fabulous.  I love six...don't you?

Wednesday, March 9, 2011

Hello, I am a pancreas

Hello, I am a pancreas--well, I play one in real life anyway.

I am up at all hours adjusting, dosing, and praying.  Lows occur when you least expect them and when they are the most inopportune.  The other night a low blood glucose level arrived at 2:30 in the morning.  I woke up, had my usual fight with myself, got up and tested my son.  I was surprised to see him looking back at me in a questioning sort of way. 

"You are low."
"Okay, I will go and grab the juice."

Wow, was this the start of something new? Him treating himself? Him waking on his own?  Dare I hope?

He came up with the juice, put it on the counter and headed off towards his room.

"Where are you going??
"To bed."
"I don't think so. I am up and so are you.  Sit down and drink this."

I let him go back to sleep after his juice.  No sense both of us being awake to retest.  Besides, he is the child, I am the pancreas. Its my job to be up.

I headed back to bed once he was in range.  Crisis averted, now time to unwind because I have to be up at 6am later that morning.  I had to take Larry to the airport and then get a few other things done.  Of course, unwind time is not instant even for a pancreas.  I toss.  I turn.  My mind races. I say thank you for being woken up once again at just the right time.  Eventually I fall asleep knowing that in a matter of hours the alarm will sound to begin another day.

We muddle through the next day.  In order to be a good pancreas, I need to see the results of my efforts. I ask my son to fill out his log book so we can see how things are going.

"There are no problems."
"Gee thanks for the insight.  Now let me see what has been happening."

Eventually he begins to transfer the data onto good old paper for his aging mother to look at.  I know many people are saying just download the data onto your PC. Who uses a log book? Me, that's who.  I have to "see the stuff" to make changes.

After a bit of grumbling we head to bed and I call out "Turn off that XBox and what was your last reading?"
"Its off."
"Yes but what was your reading?"  Silence follows. I know he hasn't tested yet.
"5.5 (99)"

I silently swear knowing, as a good pancreas does, that I will have to check on him soon because, despite the food in his belly, we are liable to see a repeat of the previous night's low.  I remain pretty good at my job of chasing the inevitable havoc wreaked on my son's body by diabetes.  Sure enough, by 1:30am I have forced myself out of bed and he is rock bottom low.  Darn I hate being right!

This night however, my son does not wake up.  I feed him glucose tablets as he sleeps and chew along side of him as if that will make things go down easier.  Unfortunately I slip a little as a pancreas.  In my sleep deprived state, I cannot chew and count tablets.  I keep putting them in my child's lips and he keeps eating unaware of how many we have used but figuring that more is better. He will complain in the morning about the "glucose tablet" hangover he has (a horrible taste in his mouth after too many tablets being fed to him the night before).

After an hour or more, his blood glucose level is on the rise and its safe for me to get a bit of rest.  This pancreas is weary.  The pay is poor.  The hours are atrocious but the benefit of my son being alive and healthy each morning make everything else worthwhile. 

Tuesday, March 8, 2011

Factory Recall

"Don't forget to bolus for that."
"Me? Don't worry, I am making my own insulin these days!"
"Yeah right!"
"Seriously. Why couldn't my pancreas just start working?"
"Can you grow a new heart? A new lung? A new leg if I cut it off?"
"I don't know. "
"You don't know? Of course you can't. When they are gone they are gone just like your pancreas. Does not work.  Stick up the out of order sign. Done. Finished. Capput!"
"Yeah, but I was only two! What kind of a pancreas gives up at two?"
"I wish I knew."
"Well that's just stupid. I only had a pancreas for two years and it will never work again??"
"Be thankful you got two years. Some people get less than that."
"Well that just isn't right."
"You are right."
"There has to be a reason."
"If we knew the reason then they may have cured diabetes by now.  We just have to live with it."

That was our conversation the other day. It started out as a bit of a joke--my son producing his own insulin so he didn't have to bother bolusing on his pump. His pancreas restarting? As if.  Sadly, it became a lot more serious.  He was outraged at his body. He could not believe that he could be made with faulty parts.

I agreed with him.  It was not fair. It did not make sense.  Why do some people get a lifetime out of a pancreas and others only get months? Shouldn't there be a factory recall and they send us back the working pancreas? Yes, like GM recalling the steering column on my old car.  I got a letter.  I took it to the garage.  It was replaced.  Its good as new.

Can you imagine?...Oops, we messed up on that pancreas.  Can you come in and we will give you a new one? It will only take about an hour. Just drop in and we will have the new one up and working well before lunch.

Yes, that would be a great solution!

Monday, March 7, 2011

Diabetes on snowmobile

What a day! Saturday was sunny and the air was crisp.  Larry was up before the birds and proclaiming that this would be a day that we would enjoy to the fullest.  Before my eyes were fully open, he was moving the boy toys around to fit the quad in the back of the truck and hook up the trailer with the snowmobile.  My son and I were moving a lot slower but quickly picked up his enthusiasm in not wanting to waste one of the best days of the winter.

Before we left the house, my child and I went through our own checklist...
How much insulin do you have?
Full cartridge. Battery life is good. Twenty test strips will get me through the day but I don't have hand wash.
Have hand wash. Should we bring an syringe in case your pump dies?
We never bring a syringe for trips like this.
But what if???
Okay, we are ready to go.

And go we did.  We took the machines to our drop off point and didn't return until after supper.  Larry was off on quad and my son was my chauffeur on the snow machine.  After flying over one jump, "just to loosen up the track, Mom", I was a half inch shorter and yelling his full name (you know that means trouble!). Despite the rough start, the rest of the trip to the cabin was perfect and incredibly scenic. 

An hour long ride and we were at our destination.  Soon we had the fire in, roasted a few wieners and were ready to enjoy some more sight-seeing. As we took off for the second time, I began to panic.  Did my son test before we left? Was I allowing him to drive when he could be under 5 (90)? What kind of a parent was I? How could I forget something like this? We are going for a good ride.  We will not be stopping ever ten minutes. I should have made sure he tested. Please Diabetes, give us a break and let us just enjoy the day!

At the next stop, the first words out of my mouth were "test".  He just gave me that casual look of, "I'm fine but if you say so."  He tested and was okay.  I felt a little better. I wanted to just leave Diabetes tossed off of the machine beside a snow drift but that couldn't be.  Stupid thing had to come with us.  We cruised around for the rest of the day, panic and Mommy concern popping up now and then.  I also was nervous about him being one of the boys and demonstrating how well he could handle a snow machine but that's just Mommy worry and par for the course.

As the day wound to a close, we were all exhausted from a day of wind, sun and crisp fresh air.  Diabetes had behaved quite well for a change. There were no lows.  There were no scary highs.  I knew that the night may not prove as positive and prayed that I would not fall into too deep of a sleep that night. After almost eleven years of this I still worry about over-sleeping.  There was no need to worry however, Larry's cold was more vicious than ever and his restless night allowed for me to be awake to test, to top up an almost low, and test again a little later. No disasters thankfully just great memories!

Wednesday, March 2, 2011

Diabetes is like a quiet child

I figure that it has been awhile so I deserve to whine.  Actually "wine" sounds a lot better but it might also make me whine more. So what is my problem? Diabetes of course! It won't let me be sick or healthy.

How does that work? Simple.  Larry has been telling me for days that I cannot escape his hacking, coughing, sniffly, keeping me awake at night germs.  The poor man has been dying with a cold that comes and goes only to rear its head every time we want to sleep.  He has medicated himself with both home remedies and good old Benelyn.

Despite my best efforts and a daily does of hot apple cider vinegar, I can feel my throat getting scratchy, my eyes are dry and my chest is heavy.  I am normally very aggressive when this sort of thing happens.  Its the aforementioned hot apple cider vinegar during the day and one good dose of Neo-citron at night. 

Obviously I have occasionally been sick in the years since Diabetes moved into our house. I have been lucky though in that I have never really been drag down, let me lay here and die sick in years.  I am nowhere near that sick right now but I would love to do my usual cold butt kick routine and have it done with. Diabetes won't allow that tonight.

Why? Well you see the problem is that Diabetes is behaving.  My son's nighttime numbers have been incredibly good.  He is staying around 6 (108) all night long--well as all night as my testing shows.  One might think that this is a good thing and I should easily be able to medicate myself without worry.  Wrong!

You see, since he is perfect, I know that there is trouble brewing.  Diabetes is just like a child playing quietly--you know that they are playing quietly because they are happily redecorating your walls with permanent markers.  Diabetes won't color our walls but it will make my son's blood glucose levels drop soon.  I won't be lucky enough for him to spike. Yes, that is lucky because I can correct, sleep and deal with it in a few hours.  No, I know that he will soon crash and I will have to wake up at the right time, test, feed, wait, feed, etc until I want to scream.

Now I could take a chance, try to medicate myself and then hope that I wake up.  I could rely on the amazing Guardian Angels that watch over him at night and manage to kick my sorry butt out of bed when I don't want to move.  They have never let me down yet but I fear that I may let them down.  What if they try to wake me and for the first time I win, say "No way Jose. I am asleep!" and he is low? He won't wake up.  He never does. One day he will (I pray!) but for now, he sleeps.

So, time to grab the wine or perhaps just some herbal tea and aspirin and hope to ward off the germs flying around our house for just one more night.