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. 


Do Not Disturb

Leave me alone. I am not awake.
Yes you are.
No, I am sleeping. Its too early to be awake.
You are awake and you know what you should be doing.
No, I am not awake.  I am merely rolling over.
You know that you are awake for a reason.
No, I am awake to get a little more cuddly in this warm bed.
You know that you have to get up.
He tested only a few hours ago. I should be able to sleep a little longer.
But you woke up.  You know that you wake up for a reason.
Yeah, its called the need to use the washroom but I am good right now.  Sleep sounds perfect.
You can’t really fall back to sleep.
Watch me.  What’s the worst that can happen? Don’t I deserve a night of real sleep?
Do you really want the answer to that one?
Ugh! Okay, I am getting out of bed. See my feet hitting the floor?  See me stumbling out of my room and into my son’s?  See me testing his hidden finger?—CRAP!I told you.

Once again that little “thing” that wakes me up in the middle of the night was dead on. My son’s blood glucose level was 3.3(60).  Time to dig out the juice and my book.  Let’s hope I don’t wake up too much before I get to go back to sleep.

Thankfully he came up quickly from this low but of course my mind was “on” by the time I hit the pillow again and sleep was far away. Diabetes does not like me to sleep. It wants me to look tired and haggard.  That is not the truly scary part though (although many who see me may think otherwise).  I seem to wake up, just knowing that my son needs to be tested, but rarely does he wake up sensing that anything is wrong. That scares me. I hope that, like feeling his daytime lows, he will one day begin waking to these night time emergencies.  Until then, I really should quit fighting that voice that wakes me up but sleep is so terribly inviting!

Diabetes threw a tantrum

We began to prepare for our weekend away…
Spare clothes for when the first set gets wet in the snow?


Spare glucometer?

Test strips, ketone strips, alcohol swabs, spare pump, batteries, and infusion sets for every day we will be gone?


Insulin and cartridges? Oops, insulin is old and the other bottle is empty.  Make sure to grab a new bottle.  Actually grab two.

Why two?
One could freeze. Get two.

Soon we hopped in the truck and did the head count–two adults? Yep.  Two kids? Yep.  Three dogs? Yep and we were off! A weekend of snowmobiling, relaxing, some snowboarding, and possibly a drink or two.

Saturday morning Larry and I were up before the boys and headed out for a day on the powder.  He found us a great trail and the first cabin we found housed old friends of his.  We soon kicked them all out of bed and went off to enjoy four feet of powder, some packed snow, frozen ponds, and sunny skies. 
Half way through our day my cell phone rang. We were in the middle of nowhere. Service was poor so I had to wait to call my son back.  A text got through while I was trying to get a call out. 
“Where did you put the insulin?”  Where did I put the insulin??  What the heck was he talking about? I threw out the insulin and told him to get a couple new vials.

I sent him a message back saying just that. The insulin was whereever he packed it.  The text back left me on the verge of tears.  He didn’t pack any. Why did we have to bring diabetes along? Isn’t life enough to deal with? Why did we have to deal with remembering all of this extra stuff?  I was doing my best not to panic or be overwhelmed. Insulin could be purchased in the nearest town.  It would cost me out of pocket but the weekend would be saved. 
Larry had a better idea. His cousin had a son with Type 1.  He would call them and see if he used the same insulin.  He maded the call. The son used a different type but it was still fast-acting. What do we do? I knew that Larry would be upset to have his day ruined and I didn’t blame him. I knew that changing insulin was not going to kill my son but it would work differently and require some serious testing.  Larry asked me what to do. I said, he could use the other type of insulin.  He told them to bring the insulin over to my son.

We gave them a half hour and then we called to see what had happened.  My son was outside playing in the snow. His pump was filled and all was okay. I reminded him to test a lot and all was okay. 

We continued our day and my son continued his.  We got back in the early evening and found everyone alive and content.  We promised the boys that they would be able to ride around the next day but they seemed to have had a great time amusing themselves in the snow.  As the evening wore on, my son sang the praises of the new insulin. He was running lower than he had in ages and he was happy about it.  I reminded him that he was also more active than he had been in a long time.  I checked how much insulin he had in the cartridge and tried to decided if I needed to buy more or if we could make it until we got home. We were good but I needed to top up the cartridge he had. When I asked for a new cartridge my son said, we forgot that too.

What???? Again, I was surprisingly calm. I asked how he filled the cartridge. He said he should be a doctor! He used a syringe and filled away.  Forgetting the cartridges was my fault. I was sure there were some in the bag but didn’t look.  I was glad he had figured out how to make things work on his own. We refilled the cartridge he had out and all was okay.

That night I reduced his basal rate in fear of the different insulin and the higher activity.  He remained okay. He lost a site during the night that Mom didn’t find out about until the next day so he was a little high. The next day was equally as active and that night diabetes continued its weekend long tantrum. It had interupted a couple’s day.  It had messed up a “guys’ day”.  The last straw was it messed up another night sleep–for four of us.
At 3 am I woke up.  I stumbled across the hall and tried to test my son.  I couldn’t see. I couldn’t find a light.  I had him wake up to test.  He couldn’t get blood in the strip either.  We turned on a light, no longer worried about waking his bunk mate.  Thankfully the other child continued to sleep while we waited to see what the meter would say.  He was low.  Crap! I had brought a box of juice packs so I headed over to my room to get one. Of course my book fell and things began to crash in the tiny room.  So much for being quiet!

He drank the juice. I turned on my light to read knowing that I would most likely wake Larry but hoping he would sleep.  No such luck. “He’s low?” Yes. He tried to go back to sleep.  

I read for 15 minutes and headed back into my son’s room. Test. Going up but still low.  Crap! More juice. Box is now harder to get into. More banging. Will anyone sleep through this?? Drink. Read. Wait. Hear more people waking. Lovely.  I suck at being quiet at three in the morning in someone else’s house. Diabetes should learn to be quiet. I wait. Retest. Yes! I can sleep!! Well for another couple of hours because we were leaving first thing in the morning.  It would have been so much nicer if diabetes had have stayed home or at least learned how to behave in public.

Diabetes Holiday Sequel…or More Grey Hair

My son is now safely tucked back in front of his XBox.  My night-testing holiday is over and not a moment too soon! I haven’t looked at his log book yet.  I don’t have an idea of how much testing he did (or did not do) while he was gone. I don’t know what bolus errors were (or were not) made.  None of that matters. Having a child with diabetes away from your watchful eye is stressful in itself.

My son enjoyed his time at his father’s.  He caught up with friends, met new family members and enjoyed a short visit with his older brother.  Mom should have enjoyed not having to get up at 3 am each night but here or not, my body would not sleep through the night. I was awake as much or more with him being gone.  Last night I was awake more than ever when logic suggests that I should have been savouring that last full night’s sleep until Easter holidays.  Not me! I wrote this blog.  I did errands.  I worked on my website…all in my mind of course but I never shutdown until it was time to leave for the airport this morning!

I did enjoy the time that my other son was here with us.  It was great having him around again even if it was only for a few days.  He is a young man now but he will always be my little boy.  He headed back to school with reminders that phones do work for more than texting your girlfriend.  He also left with a message for his younger brother…contact your mother!

My youngest seems to have developed selective phone service.  Text messages and phone calls from Mom don’t always get through for some reason.  This first started not long after he arrived at his father’s.

“How are things going?”
“How are your readings?”
“I was high”
“Do we need to make changes?”
“Changed my site”
“So are things better now?”
“So are things better now?”
“What is K?”
“Yep to what??? Are you still high?”

And so the conversations continued. I would call or text. I would get one word answers that left me more confused than relieved.  He swears that his log book is done.  He was low this afternoon already.  Hopefully reading his log book will give me a sigh of relief because he did test, he did bolus, he did log.  I can dream, hope, pray!

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.

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!

Just another night with Diabetes.

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 Nazi Mom.

Anger. Frustration. Fear. Terror. Sadness. Tears. Overwhelmed. Frustrated.

Yes, that was frustrated twice. As a parent, there is nothing worse than when a child lies to you. I know we have all done it. As a child, you seem to have to try to see what you can get away with. You want to make your parents happy so why show them some of the ugly reality? Besides, they tend to get mad and you get in trouble. 

As a parent, its a knife in the heart. Its that perfect little person that you held in your arms those first few months and promised you would protect at all costs.  That perfect little child grows and will tell you what they think you want to hear and the hurt when you find out its not true cuts you to the core.

Its not like my son is my first teen.  I have a 16 year old. He has lied to me. He has gotten in trouble for doing things that I felt were inappropriate and even illegal. He has never seriously hurt himself and continues to get good grades. I remain thankful for that  but each slight hurts just as much as the first.

Add diabetes to the mixture and these teen years…well I am working to fight back the tears because the consequences of drug abuse, alcohol abuse, unsafe sex, and non-compliant diabetes care are all the same.  Its having that last item thrown into the mix that just makes matters that much worse.

Last night I went to check on my son.  I was more than a little concerned about his overnight readings because he has recently decided that he wants to be fit.  His body has become his temple and he is feeding it good food and exercising.  Being a supportive parent, I have allowed him to purchase some gym equipment and remind him to test before, after and even during a workout.  He has been doing that. Last night I was tired and went to bed before him.

“What is your reading?” 
“Okay, you are going to have a snack and test before you go to bed right?” 
“Call me if you have any problems.”

At 2:30am, I had to get up.  I tested. He was low.  I cursed and headed to the fridge for some juice.  I came back, he drank and then I went to check his meter to see what his last reading was.  That was when my world began to fall apart once again.

At midnight, the last test before mine, he was 3.1 (55).  Fifteen minutes before that he was 3.5(around 60ish).  He was dropping and he went to sleep!!! He did not call me for help.  He just went to sleep risking not waking up again.  I was shaking and wanted to cry! I literally thanked God that he was still alive and hadn’t seized or worse.  What was he thinking???

If this was going on, what else was going on? I sat on his bed and began to look back through his meter.  I was livid.  I was in shock.  I wanted to scream but it was now 3am and people wanted to sleep. For weeks, he had been lying to me about his readings at school.  He put in numbers that were in range so I would not make any changes.  He knew that that could be a problem.  They were never perfect.  They just looked okay but they were ALL fake.  My heart was broken. My baby was lying to me. He said he wanted to be fit and look after his body but he was working to kill it.

I was beside myself.  I wanted to pull him out of bed right there and then.  That would do me no good. After he was in range, I went back to bed and tossed and turned.  What the heck was I to do? How do I get through to a teen who thinks he is immortal? We have all been there.  How do I teach him? How do I not scream at him in my frustrations? He is a good kid. He is breaking my heart.

I am going to try the health angle.  I have taken away his new prize possession for a week–his dumbbells. Its the only thing at the moment that he seems to care about.  I thought about his phone but that will be the next stage.  I will now be texting him at school every day. Its allowed and it will be done. I will be asking for readings at set times. I will be checking his meter EVERY night. He will learn that to be healthy and buff on the outside, he needs a healthy body on the inside as well. I have to try and do this without freaking out. That is going to be so hard because watching your child potentially hurt him/herself is so devastating.

I told my fiance about this at breakfast.  He knew I had been up with my son last night because he was low but didn’t know the rest of the story at that point.  As we discussed it, we both decided that part of the problem most likely is not wanting to test in front of his new peers.  I am sorry but that is life. That is the life of a person with diabetes and not wanting to is not going to change things. There are things in my life I do not like to do but it has to happen. And I wonder why I have stress and anxiety in my life? I don’t know that it will ever end with diabetes in the picture…and children.

I guess its back to tightening the reigns, being more diligent, kicking his butt and being the terrible mom.  It feels like grounding him…you know Mom is punished as much as he is but time for mom to suck it up as well. This is serious and needs to be nipped in the bud NOW!

Wish me luck…I am in for an extra long and painful long weekend with a grouchy teen and a rough week to come!

Doug Burns, Former Mr. Universe and PWD

Mommy sleeping guilt

Vacations are terrible for us. The vacation part is fabulous but the highs that seem to result are torture. You see there is the limited activity while you are driving, flying, boating or visiting. There is also all of those strange carbs. You tend to eat out more and eat new foods at friends and family dinners. On occasion we get the carbs right but more often we seem to miss testing, bolusing or getting the cabs right.

The other problem for me is “mommy guilt”. When we stay in the same hotel room, I hear every turn he makes. I sleep for an hour or two and wake to one of any number of noises. I look across the room and see my son sleeping. I feel like I should be testing. I also definitely want to get some sleep and relax as well. He might be high or with all of the insulin we have been pumping into him, what if he is finally low? I have to test.

Night testing is a personal choice. After reading a recent study stating that 5-27% of people with Type 1 diabetes will die of Dead in Bed Syndrome, my choice is to continue to test at night. I have always been a night tester but I completely admit to getting tired. Often I don’t fall asleep until at least 11pm and seem to wake up within two hours. I will test my son then and then its back to doze for a bit. The first test has happened because I am positive that it must be at least 3 or 4am. The second test will happen because I am paranoid that its later and there is a reason that I have woken up.

The other night, I watched my son sleep. I woke up to test. I watched him sleep. I finally fell asleep. I woke to hearing his pump going off because his insulin was getting low. I tested when I turned off the alarm. I fell asleep. I woke to someone tossing around in bed. I tested. I fell asleep but was woken up by a call reminding me of an endo appointment for next week. The time difference between where the appointment is and where we were located meant that I was answering my phone at 5am. Might as well test but wait, the low insulin alarm is going off as well. I really did not want to get up for half of these tests. I wanted to sleep. I watched the males in my life snoring and enjoying the peace and relaxation of a good sleep, I recently bought a sleep apnea mouthpiece to help get rid of the snoring. I was jealous. I hated diabetes. I wanted to sleep like this. I wanted a break. One day I guess…

Error 5

I looked over and my clock said 3:00am exactly. My mind said, what are you doing awake? My heart said, Get your sorry butt out of bed and test your child. Stupid heart!

I keep lighting to a minimum during these tests because basically I don’t want to wake myself up. I know how hard it is to get me back to sleep and I really don’t want to experience that sort of torture.  I find a meter on the kitchen table. I insert a test strip, grab a lancing device and head up the stairs to test my sleeping child.  My mind is screaming, You’ve only just fallen asleep so you KNOW he is going to be low! You are just never going to get any sleep tonight!

I try to ignore myself. I search for an available finger and eventually wrestle it down. The blood flow is good tonight. He must be high. I wait for those five seconds to see…..Error 5. What the…..???? What the heck is an “error 5” anyway? Back downstairs to get another test strip. Stupid meter. There was a tonne of blood. Do the diabetes gods not realize that this is just going to wake me up?? I do not need exercise at 3am! 

Okay, new test strip, back upstairs, wrestle finger again, lots of blood still, strip full and…..Error 5.  What the heck is a flippin’ Error 5??? I have had enough! Back downstairs for the third freaking time. Can you tell that diabetes has done it and woken me up? Yep, I am awake and I am not taking this crap from this meter. I grab its identical, although slightly different colored twin, who is coded for the same test strip lot. I also grab the bottle of test strips. I will get a reading without doing my morning workout on the stairs!

Again, I find a hand as it stretches in its sleep.  I snafu it quickly and lance it. Blood remains lovely and deep red. Strip sips said blood and….Finally a reading of 7.5 (135)! Good enough for me. I don’t need a perfect 7. I need some sleep! 

Stupid diabetes!