But He Doesn't Get a Vacation

My son has been away for almost two weeks. I still wake up at 3am and every hour thereafter thinking that I have to get up and test him. He has called me with problems twice.  We have not had a lot of contact other than that.

When he comes home, I will look at his meter and do my best not to totally lose it when I see how many bg readings are missing. I have set a pretty low target in my own head for him to meet. If he has checked this minimal amount of times, I will do my very best not to freak out at all. If he has not met this minimal requirement, there will be a lot more talking and consequences. Well that is the plan at least.

In the meantime, I am slowly overcoming my latest bout of “Mommy Guilt”. You see, with my son gone, I can enjoy that extra glass of wine without worry that I will need to be focused and sharp at 2am.  I can lay in my bed at 4am and not have to test to see if his bg level is rising or dropping. I do not have to figure out the carbs for any meal.  Basal rates and site changes are things that I hope he is dealing with and I will handle further when he gets home.

I get that break.  Now, my son gets a break as well. He doesn't have me telling him to test. He doesn't have me asking if he has changed that infusion set.  I have only text him and asked about readings after we have made a change.

He does however still have to count all of those carbs.  He still has to consider how to handle his insulin after hiking with friends or staying up until the early hours of the morning. He has to remember to do his site changes and to retest after a low.  He has to decide when to say “this site has failed and needs to be changed.”  He doesn't get a break from any of that. He still has to handle those highs and lows while I get a break.

As a parent, we want to take those burdens from our children.  We can’t of course. I give him as much respite as I can when he is with me, but one day soon he won’t be with me anymore.  He will be doing all of this on his own.  These small breaks prepare both of us but I know that I have the better end of the deal. I have started having nightmares that I have overslept and forgot to test him but they will fade in the coming days as I get back into the routine of getting up again.

It's all a part of growing up with diabetes whether we like it or not...and I really do NOT like it.

Taking a Low in Stride

DING!

I check my phone. Who is texting me at 6 in the morning? I really wanted to sleep in until at least 8 today.  It wasn't my phone.  It must have been my iPad. Probably my oldest messaging me to tell me that he is up for work.  I had been teasing him about over sleeping.  I tried to go back to sleep.
"Your phone is ringing.  Answer your phone. Its your phone. Please answer it!"

Nothing good comes from a phone call at 6:30am.  I see my youngest's phone number. I hear a deep voice.  He had  a site issue the day before. I am sure its my ex-husband calling to tell me that my son ended up in the hospital or they need help.  As my mind clears, and I hear "we need to make some changes. I was low at 6am."  I realize that it is my son!

"What are you doing up this early?"

"Got to get my exercise! The early bird catches the worm! You can't sleep your life away."  says the child who can easily sleep until two in the afternoon!

Hold on! He said he was low. Now he is saying that he is taking a morning walk.  My brain is starting to clear and this does not sound like a good situation.  I ask him if he is still low. He says no but he is walking and taking breaks just in case.  He swears he is testing and he is okay...and then the connection is gone.  I call him back. It goes straight to voice mail. I call again. Same thing. I try to go back to sleep but my imagination fires up in high gear. What if he went low and fell in a ditch somewhere.  I text him to call me.  I try to go back to sleep. It's not happening.  I call again.

Finally after about 10 minutes I get through. He had been camping with friends, got up this morning and was walking back to his father's house. He was no longer low.  The low was earlier.  I asked if he had over bolused the correction from his site failure, been drinking, or made a bolus mistake in some food that he ate.  He said to no to all of the above.  I am not sure that he would have honestly answered question number two but I threw it in there amongst others so he could say yes, without saying a specific yes to the alcohol part. Either way, we decided to leave the low for another night because the corrections may have had an impact...amongst other things.

We chatted for a bit longer until he informed me that he was back at his dad's and was hoping for a big cooked breakfast before his father headed off to work. We discussed bolusing strategies after his morning walk and then said good-bye.

I tried to go back to sleep but at that point I was sadly too awake to think about it. Instead and I lay there and realized that this was a foreshadow of times to come.  Times when he would be by himself and possibly calling to bounce a diabetes strategy off of me (or not).  Times when I would worry and wonder if he was safe after a low.  Did he fall and there is no one to help him? Those are things I will worry about but he also showed that he was okay.  He was taking it all in stride...literally. I will have to learn to do that too...one day...some time..later.

No Blood? No Tears? What Happened?

Wow! Did that really happen? Was it really that painless? Did I miss something? Why am I not ready to cry in frustration? Are we making progress?

The other day, I sat down with our notebook. Its the one that says what sort of workout my son did, how intense it was and what we did about diabetes care as well as what sort of results were had. I asked for his meter and I plugged it into my iPod.  It had only been a few days since I had done this. I was still a little nervous about what I would find. 

Despite the fact that bg level reviews are supposed to be a time for discussion and learning, they normally are times when I cringe and want to cry while my son glazes over and comes up with strange excuses for missed readings. This time was very different!

I noted the readings.  We talked about foods before exercise. We talked about foods after exercise. He talked about how he felt exercising with various foods in his system.  We looked at missed readings and high readings. He was quick to point out his own errors and state that he needed to improve to get back to that guy he had been the week before.

I told him he had done really well. I was impressed.  He walked away with his own definition of what needed to be done and I did a small bit of tweaking based on my own feelings.  The biggest shock was the feelings and the atmosphere when the process was over...It was great! There was peace.

I felt good. I was happy to see readings and an interest. He felt pretty happy with things in general. He had seen decent numbers and had a strategy for readings that were a little off.  There was no blood spilt.  There were no tears.  Could we be making progress??

He goes away in a week and will be on his own for his diabetes care. This is normally a time when he applies the motto "When the cat's away, the mouse will play!" or his his case when the mouse is away from the cat but you get the idea! I have been reading Moira McCarthy's book as often as I can.(Blog review to come later!) I think I have a better grasp of will most likely happen while he is gone and why.  I think I may be better able to handle it when he comes back...well maybe...well I will try anyway! For now, I will just savor a really nice sharing of diabetes information with my son. 

Its a BAD day for Da 'Beetus

"Mom you should have warned me!"

What was he talking about?

"Mom you should have warned me that we have a clinic appointment tomorrow! I would have done a lot better. Today was a really bad day for da 'beetus!"

He did know that he had a clinic appointment today. He simply chose to forget...like he forgot to test a number of key times throughout the day and like he forgot to bolus for his supper! It was a very bad day for "da beetus" alright!

I have downloaded his meter. I have written out his basal patterns and the result is that I don't want to know what his A1c is because I know it will be bad.  I also wonder what I have been thinking in looking at his basal patterns on the weekend versus the weekdays.  The weekdays are a mess. My first guilty thought was "its time to do some serious basal testing and fix this!"  My second thought was "why?"  This is my son's last full week of school.  Next week is an exam every morning and then slacking...I mean studying every afternoon. After that it is basically summer vacation, a time when we switch over to a permanent "weekend" basal pattern.

I hate the thought of our team looking at his readings. They are a mess but each one tells a story.  They say... "He didn't weigh his cereal."  "He eats constantly and there is no break to test basal patterns."  "He is working out and we are working at learning how exercise impacts his insulin needs."  "Mom has given up asking for data and works with the little information that she gets."

My son said that I should just let our team do their job. That would be great but they have no data either! How do you say adjust that basal or bolus ratio based on a reading that was taken 20 minutes AFTER he ate? Hopefully they will simply be on board with helping to get us a CGM in the fall or whenever the DexCom comes to market.  Perhaps they they will remind him to test if he wants his licence.

I hate clinic appointments. Why do they always feel like you are going into the principal's even though you know that you are doing your very best? Perhaps I will just go in, keep quiet and let my son handle all of this one...that would make things interesting! Wish us luck!

Carb Counting King

Thank you to everyone who offered kind words and support after my post the other day.  The day proceeded to get a little worse but in a way that had nothing to do with diabetes and managed to bring things into perspective for both of us.  Each day will bring new challenges and as a parent, I have to work at letting go and saying just enough without making him feel as defeated as he did on Wednesday.

Not all days are that dark or frustrating however.  Over the past week we have had a new competition of sorts going on.  When my son and I eat together, he will usually wait for me to give him the carb count for his meal.  He is more than capable of doing this on his own and does a decent job when he is away from me, but when we eat together he enjoys the break…or so I thought! Now I think I am just a source of amusement for him.

I came to this realization the other day.  I analyzed his meal.  I totalled carbs, subtracted fiber, guesstimated weights, and after a number of minutes came up with a total.  He then said “I could have told you that without all of that work.”  I laughed at him and said “yeah right!” and so the battle lines were drawn.

He swore that while I added, subtracted and multiplied, he just “knew” what he needed to bolus.  As the competition began, I would no longer say the carb counts out loud (which I do both to help him learn and to bounce ideas off of him).  I quietly would get my total and then ask him for his.

The first time we did this I grinned as I asked him his total. It was a large meal and there was no way to just look and know.  He replied “129″.  My jaw dropped as that was the exact calculation that I had arrived at.  Darn, maybe he was onto something!

We did this a few more times–smoke rising from my ears as I did the math, and the calm coolness of Mr. “I just know”.  He was usually within 5g of carbohydrates.  I had taught him well or he eats the same on a regular basis but these meals were not his usual fair.  I was impressed.  His super carb counting skills came to a crash last night however.  I asked him his guess while knowing the answer.  He came up over 100 carbs too high!

I told him that he had just overdosed himself. Mom wins! He just shrugged in his usual manner and vowed to win the next round.  We may have our downs but strange diabetes games like this bring smiles to both of us and make me feel a whole lot better because I see that he really is learning.  

Slurpee Adventures

My brother and sister have been addicted to Slurpees for longer than either would like to admit.  It wasn't overly surprising then, when my sister pulled into a 7-11 store on our way to her house and proclaimed that she needed a Slurpee. 

I am not the fan that my siblings are. I haven't had one in years. I knew however that my youngest son would probably love the try to cool treat. I also had heard from people who lived near 7-11 stores, that they now had low carb Slurpees.  We were set!

I found the calorie reduced Crush Slurpee and filled a large glass. I then began to look around. "I don't suppose that they have a carb count listed anywhere around here do they?"  I asked.  I searched for cup sizes and any other details I could find.  There were none. 

My sister was certain that we could find something on the Internet and promised to help me dig around when we got home.  

I hopped into her truck, grabbed my phone and began a search.  I found the Slurpee in question but the carb count was for 355mL beverage.  How big was the cup I had? I continued to search while we drove back to my sister's house.  

When we arrived my son tested and began his frozen treat.  He was not as enamoured as my siblings but he was not giving it up either. I was still working on the carb count.  I finally found the serving size for a "large" cup.  My sister piped up to cross multiply and divide to get the carbs in my son's Slurpee! 

Sadly, I was too familiar with this process and got out the calculator.  Soon we had a carb count of approximately 76g CHO and my son was good to go. 

The entire process took at least a half an hour.  It struck me that in "normal" circumstances a parent goes to the store, brings home a treat, the child eats the treat.  The end.  For those that think that diabetes is no big deal, they ought to try buying something as simple as a low calorie Slurpee for their loved one and see what sort of a deal it really is. 

Diabetes won that round...

Once again, let me just say...I hate diabetes. It gets on my nerves. It messes with my mind and every time I dare to think I have things figured out? WHAM! It screws with me. 


A few nights ago we were traveling to take my son to visit with his father for a few weeks.  We made a few stops along the way and decided to enjoy a nice big pizza in our hotel room. That night readings provided some great insights.  My son was perfect after two hours.  His readings climbed at the  four hour point.  Eight hours after eating the fat was wreaking havoc and my son was nice and high. Ugh!


I decided to take this as a learning moment.  I took careful note of how things  rose and vowed to make some great, informed changes later. I was going to turn my frown upside down!


The next day we headed back on the road for the final leg of the trip for my son.  We stopped for some lunch. Once again, our travel meal was higher in fat than I would normally like.  Once again, I was sure that we were going to defeat diabetes by getting the insulin ratios and delivery times perfect. Once again I was wrong! 


As we traveled down the highway, I heard my son ask "How much of this glucose gel should I take?"


Crap! "How low are you?"


He was 3.0 (54).  I told him to drink the entire thing.  I looked back and noticed how pale he was.  I began scouring my purse for more glucose. I always have enough food to feed a family of four for a week but I had cleaned things out when I went away last month. I hadn't replenished. What was I thinking? 


Panic began to creep in. We were on the highway.  We were not near fast acting glucose.  All of our beverages were sugar-free.  I watched the clock and held my breath. Finally I asked my son if he had retested.  He did. He was fine. Phew!! Catastrophe averted! 


Later, I found more glucose hidden in the truck for such emergencies but I am so glad that we didn't really have to worry about it and I still hate diabetes!

Oh versus Argh!

I had reminded my son numerous times that it was site change day.  Our movie ended and he headed off to his room. I followed a little while later to give that one last push regarding a site change. 


When I looked into his room, he was sitting on the bed with his site one hand and his other hand was poking his leg. 


"What are you doing??" I asked incredulously. 


"I am looking for a good spot. I need to find the place that when it goes in I go--Oh!Its in?  rather than YIKES! EEK! Man that hurt!"


It made sense I guess but I just look at the spot, find a place with no injection marks, clean it and jab.  Its a simple process.  He was still routing around his leg. 


"Why don't you just stab it and get it over with?" I asked. 


He looked at me like I had lost my final marble.  What planet did I come from, I am sure he wondered.  Finally he replied that it had to be just the right place. He lined up a spot and then took the site away. He closed his eyes.  He opened his eyes. He made a few faces. 


"Just count to six and BAM! Its done. Why are you clicking it a hundred times? You will wear out the inserter before you ever start." 


Once again "the look".  He explained that by clicking and inserting in the air he was loosening it up so that it would be easier when it hit his leg.  It was now my turn to look at him like he has lost a few of his precious brain cells. 


I continued to watch, wonder and press as to when he was actually going to put the site in instead of mauling his leg. After much grumbling I heard the "bang" and....


"AAARRRGGHHH! You shouldn't have pressured me. You had me hit the wrong spot!"  My son continued to moan and groan in pain as I checked to make sure the tape was in place. 


I felt rather bad (but I couldn't tell him that). I left the room and shook my head.  Each day he (or I) stab his fingers and make them bleed numerous times.  He says it doesn't hurt anymore but does it hurt any less? Every 3-7 days (his count not mine) he will stick a larger needle somewhere into his body so that he can live another day.  


I just read a blog post by Scott Johnson in which he notes that diabetes is a constant attack into every aspect of his waking and sleeping life and the only respite will be when he dies--or there is a cure.  It breaks my heart to read this. It breaks my heart to see others go through this and even more so to see my son living that same life. Diabetes is a cruel disease.  

Uncharted Territory

I was recently going through my son's pump and stopped in shock.  I was struck by how much things have changed since he first began pumping. 


When my son first got a pump, we needed to have the ability to use very small basal rates. Despite having a 300 unit cartridge, we would only fill it to 200 units and still have to throw some out after one week. 


His carb to insulin ratios were of course much different and his basal rates were never close to 1 unit per hour.  


Over the years, I have gotten used to some of those changes. I learned that sweeping changes would no longer kill him. Puberty was turning his insulin to water and my brain was on overload. 


The one thing I never expected however was the importance of the midnight carb to insulin ratio.  My son didn't eat that late.  On a really special night of roasted marshmallows he might eat at 10pm but we didn't need to worry about anything after that.  The ratio set after midnight was just to satisfy the pump.  It had no real significance...until now.


Now that carb to insulin rate is just as important and used as often (or more) than breakfast! He often finds himself creeping the halls late at night searching to see what goodies are hidden in the fridge.  


It took me a bit to realize this. At first I thought, oh he needs his overnight basal rates tweaked. I began to look much more closely at my son's eating habits. There were boluses at midnight and one in the morning! This time now mattered.  I had to make changes and pay close attention.  What had happened?

Oh yeah...I have a teen son! What was I thinking?

Give him an Inch

I stumbled into my son's room at 3am.  I grabbed his meter and tested. He was 18(325).  What the??? He was almost low a few nights ago.  He was a little high the night before but this is more than just a little high. What was going on?


An eye looked back at me. "Do you feel high?" I asked. 


"No" He mumbled from his bed.  


I checked his pump and he had corrected at 1am.  What was up? I asked him and he made some sort of excuse. I looked a bit closer. When was his last site change? BINGO!


The site reminder said he should have changed his site two days ago...around the time of the mysterious increases in bg levels.  Did said son do this? No, he pressed ignore and continued on with his XBox game.  


I have been obsessing over his testing. I have randomly checked his meter. I have made small tweaks BUT I did not write down on my calendar when his site needed to be changed (I am sooooo going to miss this feature when we have to give up our Cozmo).  Mom not nagging plus son ignoring equals a bad site that was causing unnecessary highs.  

Moral of the story...Mom needs to be more on the ball checking readings and noting when sites are to be changed followed by harping until those sites are actually changed.
 

The Meter Ate It

"Why are there no readings from the time you woke up until an hour ago? I asked you specifically about testing more than once today. What happened to the readings?" 


I was going through my son's meter, which I have been doing each day, to check for patterns and see if some of the highs he experienced while away were due to carb counting errors or if there were changes needed. 


"What? No readings? I know I tested.  Well, I know that I tested before supper. I told you the reading. It has to be there. Maybe I used the other meter. Let me check."


Of course the other meter produced no tests either. He reminded me that he had told me his reading before supper, which conveniently was a perfect 7(126).  I reminded him that he had lied before; and I thought to myself, you lie with perfect numbers because I have lectured you about the dangers of me making changes based on false numbers.


He continued to swear his innocence and give me his best Bambi look. I wasn't falling for it. I suggested that perhaps we needed to go back to him showing me each time he tested so I could verify that it actually happened. He continued to state that there had to be a test in his room somewhere. As I left his room I suggested that he find it and bring it to me when he did. 

I walked down the hall shaking my head.  Raising children is not an easy task--ask your parents and your grandparents.  Raising teens is a bigger challenge. Raising a teen with diabetes? Well they tell me we will both make it through and I will look back going "Wow, that wasn't so bad."  In the meantime, I guess I will be triple checking my son's glucometer for the next little while.  

And then there was the bad news

A few hours after my son got home from his time away, I asked to see his meter. I knew there was going to be a problem when the excuses began.  


"Well you see, you won't find all of my readings on that meter. I used another meter in my shed."


I asked where the other meter was.  Of course he had left it behind at his father's.  That was convenient! He said that he had done a lot of testing on the meter he brought home in the last few days so it would give me some idea of what had been going on.  


As I scrolled through the meter I found readings that were between 20-30mmol (360mgdl+).  I tried to breathe.  I asked him what was going on. 


"Well, I was high this morning because I didn't want to go low last night and interrupt the little bit of sleep I was going to get.  You see how I was low at 11pm? I had a juice and a granola bar to cover it." 


"A little bit of overkill don't you think? You were just low (3.7/65), a juice would have done it.  If you weren't going up that quickly after 15 minutes then you could have added more without sending your readings through the stratosphere." 


I continued to scroll through the meter and note the results.  I continued to work to breathing.  All of the readings were high and higher! What was going on? 


"I think my site was going bad.  See, my readings dropped once I changed the site."


"Dropped? When? Where? How long was this site in? You were running over 20 (360) for days!"


He replied that his site was a little old. He had probably gone over by a day or so.  Perhaps his site was as much as seven days old I asked?  He just shrugged his shoulders. I wanted to scream but instead I asked him about a cut on his hand. 


"When did you do that?"


"Yesterday."


"What do you think it will look like in seven days?"


"I hope it will pretty well be gone."


"So when you lance a small hole in your body for your cannula, how much healing do you think has gone on around it in seven days? When the tissue around it heals, it can't absorb insulin any more." 


He replied that he thought he could go 5-7 days before a site change.  I know that some people will with no problem but he has insurance, he is young, and I really didn't want to go down that alley with him so I replied that ideally sites are changed every 2-3 days. 


"Oh, well you see all of these highs have meant that I learned a lot this trip. I should probably do this more often. I never realized this stuff before. Now I know it. Wasn't this a good thing?"


I had to laugh because otherwise I would have strangled him.  None of this information was new. It was all stuff he knew before.  I told him that continuing to run that high would result in serious complications. He told me that he had been told that was hogwash.  I replied that maybe one or two highs would not kill him but doing this forever would quickly result in problems. To help him understand all of this, he was now definitely going to the Friends for Life Conference in Vancouver.  He needed some more training.


Once again he shrugged that teenage shrug and went back to enjoy being home.  I just sat and shook my head.  Maybe he would learn because of this.  Maybe one day everything I tell him about his diabetes care will have some meaning. In the meantime, I will continue to pray, to hate summer vacations and extended periods of insane bg levels. 
  

Waking up is a good thing

My son got off of the plane, stumbled towards me and yawned. He had to be up at 6am and for a teen who likes to sleep until noon, this was just way too early!

After our initial chatter he turned to me and said "You will be happy to know that I now wake up from my lows."  


"You mean you woke up more than once?"


"Yeah, I wake up feeling starved. I hate it. It messes with my sleep."

"Waking up is a good thing. The alternative is not waking up!" 


"I know but it wrecks my sleep. I would rather have uninterrupted sleep." 


"That is not an option.  Waking up is a great thing. I hope you continue it!" 


"Sleep is a good thing. I would really rather just keep sleeping. That would be great."


I shook my head and attempted to explain that an eternal sleep was not an ideal. My son grumbled some more. He is not nearly as enthused as his mother is.  He understands my relief but yet another glitch in his life thanks to Diabetes is not at all welcome.  


Oh well! Hopefully we are onto something that lasts! 

Active not sitting all day!

My youngest son had the opportunity to head out on the trails and enjoy a ride on his quad the other evening. He was with a responsible adult but "momma panic" still danced around the edges of my mind.  The person he was with knows that my son has diabetes but knows nothing about the testing, etc that we go through.  My son is old enough and responsible enough to handle these things. I had reminded him to have glucose and his meter with him. I know that he would bring them...not necessarily use them, but he would have them with him.

I had to have faith. He had been fine for a week when I had to go away unexpectedly. He survives each time he goes away on his own. He had been on a quad trip the previous weekend without his mother hovering and asking him if he had everything and he had done fine.  He would be okay.

Just in case, I texted him a few reminders...
"Don't forget your meter and glucose"
"R u ok?"
"Set a reduced temporary basal"

It was the last text that created an entirely new level of stress for me.  After him being gone for a few hours, my son called me. They were taking a break and the person he was with was making a call so he decided to check in with me (brownie point for the kid!).  I asked him if he had set the temporary basal. He said yes, he had put on his travel basal.

WHAT!?!?  That means MORE insulin.  That is for the times when he is sitting in a car or on a plane for hours on end. It is not meant for days when he will be active, throwing his body around and pulling a machine out of mud. I could feel panic rising in my throat.  

I tried to breathe as I told him to go in and stop it. He couldn't figure out how to do it!  I continued to try to breathe as I tried to offer options over the phone. I finally headed to find his old pump.  Perhaps the settings would still be the same and I could work it out while he was on the phone. In desperation I told him to shut down the pump and power it back up. It might then give us the option of stopping the temporary basal. It turns out that when you ask it to "stop delivery", the pump asks if you mean the entire pump or just the temporary basal. Victory! He hit turned off the higher basal and reset it with the lower rate. He was now good to go. Thank heavens!!

I worked on breathing again not daring to allow my mind to think about the "what ifs".  My son continued to enjoy his day of mud and fun.  Just another day in the life of a teen with diabetes! 

A Glimpse inside the life of a Teen with Diabetes

The other morning, I woke up, had my usual Chai Latte and headed down into my office to begin my daily computer ritual.  I opened my email program, signed into Facebook and checked to see what had been happening in the world since I shut things down the night before. I love to scroll through and read about my many family and friends as well as enjoy the great new pictures that they may have posted while I slept.

On this fateful morning, I came across a post by a teenage friend. I have a number of "friends" who are children that I have known all of their lives or  are the children of good friends.  Its always interesting to see what they post--good or bad.  This young person and the person's friends almost brought me to tears. I was so proud of what they had to say to each other. I was so impressed and given so much hope by what I read that I had to write about their story.

The poster was disappointed in their own diabetes care.  They felt that they had neglected their health over the past week and diabetes had really kicked their butt. They had been running high and knew that it was bad for their body. This person was very upset with their actions--or lack of. 

Quickly friends chimed in words of support and encouragement.  They understood. They had been there as well. They began to encourage each other. All members of this conversation stated that tomorrow was a new day and they would all work harder to keep themselves healthy.  They understood each other. They "got it" in a way that no one else could.

I was so very proud of these young people.  They are mature beyond their years. I know their parents. I know that, like me, some of their parents have struggled wondering if their children will "get it".  They fear that their child will never take responsibility for their diabetes--that they don't understand  the seriousness of the disease or that they just don't want to learn. It appears that we are very wrong.  

Even as I write about them, there are tears in my eyes.  These young people with diabetes have a maturity that is not often seen in their peers.  They are quirky and amazing young people.  Their smiles light up a room but they carry a heavy burden.  As parents we fear that burden but it appears that thanks to social media, they can share that burden with like individuals and become stronger because of it.

These are not my children but I feel truly privileged to "know" such amazing, strong, and empathetic young adults.  Many people refer to children with diabetes as their heroes.  These young people truly are heroes.  You are amazing! Thank you for sharing in a way that we as parents can begin to understand. 

Diabetes Boot Camp...Revisited



In March of 2009, I pondered the idea of a diabetes "boot camp".  I had mentioned the idea in previous posts as an option for a non-compliant teen but began to think about it in a bit more of a serious tone at that point. I wondered if one could truly create a place for learning that was not a supportive atmosphere but a place for tough love?

So many people think of diabetes as not that big of a deal.  We often hear of teens who just can't be bothered.  There are people with Type 2 who do not take the disease seriously and there are the adults with Type 1 who are just burnt out and can't get up the energy to fuss any more. Could I create something to help these people had been my question. 

Over the years, this remains my most popular post.  Comments are still coming in and my mind is still wondering, thinking and inquiring.  As some of you know, I am a big supporter of the CWD Friends for Life Conferences.  I am on staff at the Canadian conferences and tell anyone and everyone that they should go to a conference. They are vital to many but there are a few who arrive desperate for their child to "get it".  They hope that the interactions will be the magic pill that they need for their child to focus and take care of themselves.  I wondered if a more harsh approach would be best.

These teens often shrug their shoulders and skip vital sessions. They are not interested in making new friends and block out attempts to get through to them. Would a harsh approach work? What would a harsh approach look like? How could you get results like "Beyond Scared Straight" but for a disease?

What about type 2s? How do you get to them? I think that in some respects they would be easier than teens and in others they would be a lot harder to reach.  Someone suggested learning sessions with or without your partner.  I think that would be helpful. Adults know that they are going to die.  They can be shown that they are putting themselves on the fast track by pretending that they do not have a serious illness.

That leaves adults with Type 1.  They know the drill. They may even know what to do but they need a kick.  They are living with depression or burnout and they need help.  A butt kicking approach could be successful but with a lot of support thrown in once they decide to move forward.

Diabetes boot camps do exist. I have seen a few posted that are directed at primary care providers.  There were even one for people living with diabetes but I did not see anything along the lines of what is in my head.  What is that? Well its a very fragmented idea at the moment. I see three very different needs.  I see the need for specialized experts who are also very caring individuals.  I see the need for sponsors to be involved and the support of diabetes organizations. I see exercise as being important but so are many other areas. I see intensity and education balanced with compassion and understanding.

I invite you to re-read the old Boot Camp post.  I also would love to hear what you think on the subject.  What would you want to see? Do you know people that could use this approach?  Could it be virtual or should it be only a physical location(s)? What problems or benefits do you see? Leave a comment or email me.  I would love to hear from you as I seriously begin to revisit this concept in 2012.

Humalog...a Christmas Treat?

"Mom, why do you keep the Humalog in the freezer?"

What? Humalog? We haven't used Humalog in years.  "I keep your insulin in the fridge so that it lasts longer."

"No! Not the insulin. The Humalog"

"Do you mean the Yule log that I keep in the freezer so you won't eat it all before Christmas?"

"Yeah! The Humalog! Its a real pain trying to cut it when its frozen."

Oh my!

Muscle Mayhem

After 24 hours of nagging and the threat of using a butt site for the first time in his life, my son finally did a site change.  I was lining up the top of his little toosh but he was not having any of that! The arm that he couldn't reach was to be the site of the day.

His reading a few hours later was a little higher than I would have liked but I attributed it a carb counting error.  I went to bed and around midnight I heard him get up to use the washroom.  Much to Larry's amazement, my son never needs to get up during the night...unless he is high.  Alarm bells screamed in my head while my body craved the warmth of the of my blankets.  I forced myself to get up and waited for him in his room.

I asked him to test.  I heard him say that he was 13 (235).  Oh well, false alarm. As I headed out his bedroom door but paused and  I said again, "13.1 right?"

"No 30.4(547)"

WHAT THE #!@^??????

Suddenly I was awake.  Its time to put in a new site NOW. 

I stumbled around and found a site.  As I opened it up, we realized that the tubing was way too short for his other arm.  Crap.  I grabbed another site.  I prepared the new site and had another revelation...I should be using 30 degree sites on his arms.

As I mentioned before, my son enjoys lifting weights in his spare time. He is not into body building but his sweet little arms are slowly developing into the muscled limbs of a healthy young man.  Baby fat is giving way to muscle and that muscle is creating havoc with infusion sets! He hates the 30 degree sets. The insertion needle gives him the willies.  He has to use them on his stomach because there is too much muscle there but he still hates them. Sadly it seems that that's the price you pay for being fit. I am sure he will think its worth it in the long run.

A Faulty Pancreas Lives Here

Last night I was sitting at the kitchen table with my youngest son. He was doing his math homework.  As we worked through the page, I began to get frustrated. He seemed to truly understand what he had to do but when pen went to paper the answers were just plain wrong. I had left him to do a few questions on his own.  When I came back, I saw that the answers were not correct and asked him how he came up with his responses.  He told me how he needed to figure things out.  The process was right but the results were a disaster.

We joked as we went along that he must be out of range. He was making foolish mistakes. I chalked it up to rushing through.  As we progressed 14-7 equalled 5 and I knew that there was something seriously wrong!  He looked a little pale and finally he took it upon himself to test.  He was 19(345).

"That explains it! I think its time to take a small break.  Show me some of the other homework that you have done while we wait for you to come down." I told him.

He got his other homework and a new infusion set. It turned out that his site change was due the day before. I had woke him up early that morning to change the site because he had gone up a bit overnight and I assumed the site was bad but being my son...well he didn't do it. 

Each year I talk to parents and educators about children with diabetes in schools. Each year I mention this very thing--children who are hyperglycemic are cognitively impaired.  I have seen it is effects in my son on occasions before. Each time it happens it both amazes and scares me. 

You cannot see diabetes. You cannot "see" a high--well if you know him he might look a little off but still for the most part it is invisible to the naked eye. The average person would just assume my son was not overly intelligent.  An uneducated teacher would assume he just was not getting the concept, had not paid attention or had not studied. 

Each time this happens, I see the reality.  My son cannot fix this. Yes he can change his site but highs will occur for other reasons that he cannot control. Diabetes does not play nice.  It does not show itself to the outside world.  There is no gaping hole in his stomach area to show that his pancreas has failed.  It just quietly impacts his life.  It silently attacks and as parents we must continue to work to train those around our loved ones what these attacks look like and how to handle them.  Until there is a cure, we can only educate and pray for the best.

Glucose in the bathroom

November is Diabetes Awareness month.  Many people are wearing blue on Fridays to raise awareness, Facebook pictures are appearing with blue circles posted around them, and others are gearing up for the Big Blue Test. 

Another awareness initiative that has been suggested was "30 days and 30 wishes".  The idea was to take the 30 days of November and each day publish a diabetes related wish.  The first day, I asked the question of what your wish was for day one on my Diabetes Advocacy Facebook page.  The overwhelming answer was "A Cure!" plain and simple.  That one is a given so my wish was posted in yesterday's post--that my son did not have to worry about his blood sugar before bed or know the danger of going low in his sleep.

Today's wish is that we did not have to have glucose stored all over the house and in our car.  As you can see by today's picture, my son believes in being prepared and recently has begun keeping a tube of glucose gel in the bathroom he uses to get ready for school and shower.  Now I just wish that I knew what in the world possessed him to put a tube there!