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. 

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 pages...my 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!!

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?

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. 

 

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!

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???
Mom!
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!

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.