Sometimes your the bug...

In honor of "throw back Thursday", here is a post from June of 2009...

Sometimes you're the windshield, sometimes you're the bug

Today I am definitely feeling like the bug. It was after midnight and of course I was dying to get to sleep. I set my alarm for early next morning...my boys' last day of school. I found a meter and a strip. I grabbed a lancet, waded through all of the junk that my youngest son had left on the stairs to his room rather than putting away and was off to test. One last check for a few hours. One check and I could sleep! We had been out for pizza to celebrate good grades so I was sure that he would still be high. He had been 16 (288) earlier so I was certain that I was going to be able to rest.

Wrong! I took the meter. I filled his finger with blood. The strip refused to suck. What the???? Okay, I cleaned the finger. I got more blood. I tried again. It just barely accepted the blood. I waited for the reading...E5. Error! Not enough blood. Oh the lovely four letter words that were on the tip of my tongue as I headed back downstairs again. I would try this one more time.

New meter. This one had to be better. New strip. Same lancing device. Back up the stairs, this time grumbling and picking up items as I went. I threw the items off to the side for my young son to deal with tomorrow and headed to his bed. Once again, I lance his finger. Once again, I got a large amount of blood. The strip sucked this time. I walked towards the stairs not even considering that I might have to correct. Good thing...he was 3.2 (57)! More choice words as I shuffled off to get some juice. I filled a glass, found a straw and went back upstairs for a third time in less than five minutes.

My son was not keen on drinking. I finally got him to sip. He drank t all except the last few drops which fly out of the straw and all over his pillow.  My cream pillow cases now have spots of red strawberry juice on them! I am choked. I hate diabetes. I clean the pillow cases as best as I can and then I wait. Why are 15 minutes a lifetime when you are dead tired and simply want this day to end?

Yeah! 5.5 (99) and I was off to bed for two hours. Oh the fun! Oh the joys! Oh where is my DexCom Seven Plus????

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!

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! 

Sometimes your the bug

Originally posted in 2009 but the feelings remain the same....

Today I am definitely feeling like the bug. Its after midnight and of course I was dying to get to sleep. I set my alarm for early tomorrow morning...my son's last day of school. I found a meter and a strip. I grabbed a lancet, waded through all of the junk that the boys had left on the stairs rather than putting away and was off to test. One last check for a few hours. One check and I could sleep! We had been out for pizza to celebrate good grades so my youngest son would still be high. He was 16 (288) earlier so you know I was going to be able to rest.


Wrong! I took the meter. I filled his finger with blood. The strip refused to suck. What the???? Okay, I cleaned the finger. I got more blood. I tried again. It just barely accepted the blood. I waited for the reading...E5. It was an error reading!! Not enough blood. Oh the lovely four letter words that were on the tip of my tongue as I headed back downstairs. Let me try this again.


New meter. This one had to be better. New strip. Same lancing device. Back up the stairs, this time grumbling and picking up items as I went. I threw the items off to the side for the boys to deal with tomorrow and headed to my son's bed. Once again, I lance his finger. Once again, I get a large amount of blood. The strip sucks this time. I walk towards the stairs not even thinking about having to correct. Good thing...he was 3.2 (57). More choice words as I shuffle off to get some juice. I fill a glass, find a straw and do those stairs for a third time in less than five minutes. He is not keen on drinking. I finally get him to sip. He drinks it all except the last few drops. Those are sucked up into the straw and then fly all over his pillow. He is using my cream pillow cases and I have managed to get strawberry juice on them! I can't even blame him but I am choked. I clean them as best as I can and now I wait. Why are 15 minutes a lifetime when you are dead tired and simply want this day to end?


Yeah! 5.5 (99) and I am off to bed for two hours. Oh the fun! Oh the joys! Oh where is my DexCom Seven Plus????

Mom You are Low!

Like any good family with diabetes living in the house, we have a rule...Never Waste Blood!  If you cut yourself, find a meter. Never waste an opportunity to see what your blood sugar levels are. 


Yesterday I was drying off our blender and was stabbed by one of its blade.  I could feel the piercing of my skin and began to squeeze my finger. Sure enough blood began to spill out of a small cut. 


I was on the phone but headed to my son's room and said "I need a meter. I am bleeding."  


He dropped the game he was playing, found a meter and grabbed a test strip. It was so odd to see him moving my finger to the meter the same way I have done with his for years. The role reversal was strangely sad. 


I continued my phone conversation and he said "You are low.  Its says you are 3.6(65)." 

I told him I couldn't be low and walked away.  The blood had dried up and I couldn't retest to prove to him the result was off. 


A few minutes later my son followed me into the kitchen where I was still on the phone. "Mom, you are low. You should be having an orange juice."


I told him that I felt fine. Shouldn't I feel different if I was low especially since I don't have diabetes? 


"Mom, everyone is different. Perhaps people without diabetes feel lows completely different than I do.  The meter says low. Low is low. You should have some orange juice." 


In the meantime from the other end of the phone I heard "or at least go and take a glucose tablet."  I was speaking to my mother and she seemed to be enjoying the irony of this conversation. 


I never did have any juice. The only "symptom" I had was a mild headache that had plagued me all day.  I am going with meter error but his concern and his no nonsense approach to my reading made me laugh but it also touched me that he was worried too...only in a house where diabetes lives!




Beginning tomorrow, I will be re-posting blog posts from the not too distant and distant past.  I hope you enjoy a stroll down memory lane with me.  I will be out of the country taking in a vacation like I have never had before so enjoy and I am sure I will have lots to blog about when I return!

Mom, You realized that I saved my own life!

My son is supposed to be in swimming lessons through school.  Week one he hadn't registered properly and he wanted to study for a math exam so he didn't swim.  Week two he was high and he claimed that I told him that when he was that high it was dangerous for him to swim so he sat on the sidelines and studied his math once again.

We were now on week three. I had been in contact with his homeroom teacher because she was concerned about the time he was missing at the pool.  We were both certain that this day he would be in the water!

Breakfast was bolused so he would not be high at the pool. His swim gear was in his bag.  An extra site was packed just in case. We were good to go! Until the text message came in..."I will weird i think im droping or something". 

Panic quickly began to set in.  My son is fanatical about his spelling when he sends a text message. Most people use all sorts of short hand and he is no different to a point. He likes his words to be spelt properly if he is typing them out.  "Will" instead of "feel" put me on edge.  I called him asked him what was going on.  He told me that he was in range but he knew that he was dropping. I suggested that he take glucose for the impending low, disconnect and hop in the pool.  He would be fine but double check half way through the lesson.

When he came home that afternoon I asked him how things went.

"Well basically I saved my own life! You see, I was 8 (145) when I tested but I knew I was dropping.  I ate the glucose like you said but I didn't go into the pool.  I sat on the side and talked diabetes to my old science teacher.  Remember, her husband has Type 1? Well we chatted about him being really high at sea one time and having to be airlifted to the hospital.  After a bit I retested and after doing nothing and eating glucose tablets, guess what happened? I was lower still! I was down to 5 (90).  Can you imagine what would have happened if I had been swimming? I would have dropped like a rock! It would have been have been horrible. I could have died in the pool!"

What could I say? He was a little dramatic but I agreed that he had done the right thing.  I keep praying that one day he might actually use the lessons that I have been paying for.  Diabetes does not seem to want him to swim...and funny but my son for once is happy to agree with it!

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Our First Terrifying Low

Today's challenge is to write about a first. There are so many firsts in diabetes...the first time you inject your child.  The first time you test their blood.  The first time you make a dosing adjustment.  The first time you let them go to a friend's house without you.  The first time they have ketones. The first time they go low...

We were not allowed to leave the hospital until my son's blood glucose level went low at least once.  It was a safe place for this to happen. He was two. He had no way of telling us how he felt. I was terrified as to how either of us would react when he went home.  Eventually we did have to go home however and trying to regain some sort of control of our lives was not easy.

I tested.  I injected. I watched. I lived by the clock.  I counted each exchange.  Food was restricted and fights with a toddler were many. Life was not good but it got worse...

The first time that I remember my son going low at home definitely puts me in the "World's Worst Mom" category.  We had not been home from the hospital for long. It was early spring.  The snow had finally gone.  The boys and I were enjoying the chance to be outside.  They were playing and I was working on my yard. 

As I worked, my youngest son began to get fussy.  He was demanding. He wanted to go inside.  He was whining and basically being an annoying two year old who desperately needed to go for a nap.  I told him to give me just a few minutes. I would be done soon and we could go inside.

I never paid him any more attention. I continued doing what I was doing. Diabetes never entered my mind. It lived on the fringes.  Memories of the hospital were still fresh.  Living by the clock was our new way of life but "other" fears were not yet as strongly entrenched.

I tended to my garden, moving rocks and dirt.  My son was quiet so I assumed that he had gone back to playing with his trucks and amusing himself until I was done.  I finally turned around and looked for him.  My heart stopped.

My son was laying lifeless on the ground.  What had happened? What had I done? Instantly, I had him in my arms and was screaming at my older son, "Open the door for me now!!!"

I raced through the house and put my son on my bed. I ran to the washroom to get a clean face cloth to wash his hands and had my older son get me the glucometer. I shook as I tested his blood. He was low. How low? I don't remember. I just know that I brought juice to his lips and prayed he would drink.  He did!

Within a minute he was awake and wondering what my problem was.  He wanted to go and play.  I bribed him with watching his favorite show on TV instead.  I knew he had to retested. His blood glucose level still had to go up some more. 

I watched him as he sat, content and oblivious to the chaos that had just ensued.  I continued to shake.  What ifs ran through my mind.  I would never ignore him like that again. I couldn't. Diabetes was not interested in my timetable, its demands were to be met NOW! 

I can't say that that was the last time he went low but I can say that it was the last time I found him asleep in the dirt.  There were many other "firsts" in our lives.  Some were bitter sweet and some remain terrifying but such is life with diabetes.

Let is Snow

We have established that my son's body has an aversion to snow.  He loves snow. He loves to snowmobile and enjoy the cold crisp air. Diabetes on the other hand does not like snow...or perhaps its just allergic to the physical work that snow brings.

For years, whenever it has been snowing and I made my son go outside to shovel he would be low.  No, not after the activity but long before it has started!  Before he can put on his boots, he will feel shaky, test and be low!  It has always drove me insane.

This winter, the snow was piling up.  Larry was outside clearing the driveway.  I could hear my son head into the kitchen, open and close the fridge door, and then head back to his room.  Five minutes later Larry came in and asked him to go outside and clear the steps.  He couldn't.  He was low--in the two's (low 40s).  He did come back up, had a cereal bar for good measure and got the job done but Diabetes made sure he was low first.

A few days later, he was again asked to go outside.  Yep, he was low before he put on his mitts!

"Why does your body hate snow?"

"I think it just feels that I really shouldn't be doing this kind of work. It thinks that snow should be reserved for skidooing and not manual labor."

Funny boy! Diabetes or not, he does his share of work around the house and that includes shoveling snow when needed.  Diabetes will just have to get used to it!

Why I hate Five

Its been three Thursdays and we are still doing the "Reading Review Thursdays"! Yesterday was actually a bit of a fluke.  My son had been having high reading overnight for the past three days. I knew that it was time to make a change. I decided that it was easiest to look at the rest of his readings then as well.  As I was writing down dates, I realized that it was Thursday! I was right on schedule. Yeah me!

Yes, I need a life and am a little sleep deprived.  You see, despite being high for three nights (and I mean close to 20 or 360 for my American pals) my son was perfect to on the low side all night long last night. 

After our pump tweaking, we sat at the kitchen table and chatted while he drank a Tim Horton's smoothie.  He was 4.5(81) before he started.  He then ate two Eggo's as well.  I felt that he would soon be running a lot higher and my basal changes came just in time!

Erring on the side of caution however, about 20 minutes after he went to bed I had him test again. He was 4.2 (75)! Crap! I sent him to the kitchen to chug a glass of juice. 

"Should I stay up and retest because I am low?"
"Well, you aren't technically low. You are just in a range that I really don't like you to go to sleep at.  The juice should cover it. You have school tomorrow, get some rest and I will check later."

I checked him a few hours later and he was right around 5 (90).  Was he going to go up or drop? I was not going to get any sleep.  I hate these nights--no clear low but clearly not safe yet either.  I didn't want to add glucose and send him too high but was it safe to leave him? Would he stay around 5? Could I be that lucky? My mind would continue to race like this all night long.

I slept for another hour but I had to get up and check again. He was dropping.  At 4.2(75) I gave him juice, grabbed my book and waited.  By 4am, he was back up to 5.6 (101) and I could sleep for another couple of hours.  By 6am I was up again but he was finally up over my favorite number 6 and had climbed to 8.6(155).  A bit of peace at last!!

Today I have to decide if I keep the basal rates at their new higher level and risk a repeat performance (although with a little knowledge, a temporary basal would be added to the mix if things began to tank) or if I go back to the old settings and assume that the highs were site related. Decisions, decisions. Just another night on the Diabetes Roller coaster.

He isn't turning off the alarm clock!?!

The other morning I got up like every other morning. I turned off my alarm before it rang. I stumbled to the bathroom in an attempt to wake myself up. I waited to hear my son's alarm go off before I had to go in and kick him out of bed.
While I was washing my face, I heard the telltale "Beep, Beep, Beep!" of an alarm clock. I waited to hear my son turn it off.
And I waited.
And I waited.
What was going on? Why didn't he turn it off? Some mornings it will take a bit before he will bother to reach up and shut it off but as it gets more insistent, he always turns it off. Why hasn't he turned it off?
The beeping continued.
Panic began to creep in. He was high last night. I know he was. I tested and retested before I corrected.  He was low on insulin. There is no way he could have gone that low...could he? He was fine. Why wasn't he turning the alarm off?
I rushed to dry my face and put in my contacts. Of course because I was beginning to panic, my contacts jumped everywhere but into my eyes. I finally got everything together. I had to see what was wrong.

As I stepped out of the washroom I realized that the beeping was coming from my own room! While I thought I had turned off my alarm, I hadn't and since Larry was already up and in the kitchen, there was no one in the room to turn it off!
With a huge sigh of relief, I went to check on my son. As expected he was just waking up and looking at me wondering what my problem was. Oh my! What I do to myself!

One in Twenty

Recently the JDRF in the US took out an ad in the New York Times and elsewhere that has generated a lot of talk amongst people living with type 1 diabetes.  It simply stated that 1 in 20 people with type 1 diabetes will die because of hypoglycemia. It was geared to speed up FDA approval on the Artificial Pancreas Project.  

The fact that people die because of hypoglycemia is not disputed.  Those who have diabetes living in their house are well aware of its dangers.  We remind our loved ones to test and be in range before driving anything from a bicycle to a motor vehicle.  We wake up multiple times throughout the night to test and make sure that our loved ones are safe. We know that diabetes is a deadly disease.

Many were shocked at the figure however--1 in 20.  Many of us have hundreds of friends with diabetes listed on Facebook.  A quick scan would mean that five of every one hundred people we know will die of hypoglycemia.  That is terrifying. It brings the worry and the desire for a cure and better treatments to a whole new level.

Is that a bad thing? Jessica Apple discussed this in her recent post.  She suggested that November not be a time of feeling good and turning things blue but asking for change to save lives.  Over the years I have taken this same approach--take no prisoners and show the down side.  Yes my son can do everything his brother can but.... and its the but that should not be there. Its the but that allows him to live. Its the "but" that we need to change.

Its a fine line however in giving your child hope and showing the world the darkness. I like the power of the JDRF ad but fear my son seeing it. While I present the dark to politician and the general public, we focus on the positives at home.  

As a parent though, when I stop, personalize the statistic and think of 20 children with Type1 diabetes including my son  and then realize that any one of them including my son will die of hypoglycemia? I just can't go there. I cannot spend more than a second on the thought. It makes me ill and shakes me to the core. My heart is crushed and I am terrified. Maybe that is not the worst thing either.

That fear motivates me to work harder.  It makes me want to spread information to a larger audience. It makes me want to focus more on ensuring access to things like pump therapy and a CGM for my son and the 19 other children (of all ages) whose lives could be saved by better technology.  It also makes me want to take a harder look at the work of the DRI and other groups who claim to be working for a cure. 

One in twenty people living with Type 1 diabetes will die because of hypoglycemia.  That stark number needs to change. We can work to prevent this. We can work to "fix it".  As a parent, I cannot fix my son's body and take diabetes away from him but I can work to fix a system that keeps lifesaving tools just out of reach.

This disease is serious.  We need to be equally serious about keeping out loved ones alive and providing everyone with access to the tools to do so. We would not deny someone who could not walk a wheelchair.  We cannot deny someone who cannot produce insulin the tools to deliver and monitor this lifesustaining liquid.

Bang!

School is back in full swing and Diabetes continues to annoy.  The other night, as I was getting ready to head to bed, I thought back over the past few months.  June was a low month. I could do nothing to get any control or a break from treating and dealing with lows.  July was in range. I received some respite and a chance to breathe for a minute.  August was high. There was no controlling the beast. No matter what we did, Diabetes messed with us through failed sites and just being Diabetes. 

Obviously I was not thinking well that night because I figured that based on this pattern I should see good readings in September and then lows in October.  Where was the logic there? I seemed to have been a bit delusional in my hopes of enjoying a Diabetes reprieve.  Reality was that night, my son had his first stubborn low...well since June! Can we say that I was sooooo not prepared?

I was exhausted. I was a mess. I woke up at 3 and was up for an hour trying to get him into a "mom can now sleep" range.  The next morning was school so there was no extra rest.  We also had appointments to deal with so I really was going to get no break.

The result? Bang! I was a wreck.  I managed to string words together. I managed emails to the schools that my children attend to address issues that have already arisen.  I refused to get too involved in any of these problems and prayed no one replied to me for a day. I was feeling testy and defensive. I didn't want to mess with anything.  By 6pm I could gladly have gone to bed.  I stayed up.  We watched TV and went for our evening walk. I was dying.

It was finally bedtime. I had changed my son's rates and prayed for a better night. He was high. I love this Diabetes roller coaster...NOT!

The "Lord help me!" Basal

As I mentioned before, it is technically trying to head into summer here.  Temperatures have been all over the map for the past few weeks and more than two hours of sunshine at any given time is considered a miracle.  Despite that fact, my son has been more active than ever.  He is out playing hockey with friends in the neighborhood, at school and in other people's neighbourhoods.  We have had him mowing grass and helping with renovations to the backyard.  He has been a busy boy and his blood glucose levels are beginning to tell the tale.

We have gone from rarely seeing numbers in the two's (36+) to having a new favorite number of 2.9 (52). He was 2.9 at 9pm.  He was 2.9 at 3:30am. He was 2.9 at 10:30am.  He was 2.9 at 2pm.  You get the idea. 

I obviously have some serious basal adjusting to do. In the meantime, I have been trying to ward off all of these lows.  We have an "active day" basal for things like sports days or times when we know he will be on the go for at least eight hours.  We also have a "LO" basal for those nights when I have been fighting lows and nothing seems to work.  Because we have rain, sunshine, drizzle, rain, and then sunshine, I have been using the "LO" basal.  It gives us two hours of reduced basal rather than dropping things for the entire day.

Today  after umpteen lows, juices, and retesting, I reminded him about the "LO" basal.  As I was talking to him, my brain thought, "To heck with a LO basal or an Active Day basal.  What we really need is a 'Lord help me!' basal."  It would be the one you push when you are clean out of options.  You would implement that basal when you felt you have colossally failed as a pancreas and need divine intervention.  It was for those times when highs would not come down no matter what you do and lows refuse to respond to any of your treatments. 

With summer coming and my children away from my for much longer than I would like, a "Lord help me!" basal would also be perfect to keep him safe when he is away.  I would set it before he travels for any length of time and could truly rest while he was gone.  This is definitely the solution to many of my worries. Its not a cure but it would help reduce the rapid increase of grey "worry" hairs that I continue to get.  I mean, Divine assistance? That could be pretty powerful!

Alright pump companies, get on that phone and see if you can get a direct line to a higher

 power. Ask him/her to work with you on that new basal rates for frazzled parents and people with diabetes please.

They Got it Right...Well Almost!

Last night I was channel surfing and came across a TV show that caught my interest.  The program had already been on for about twenty minutes but it had some actors in it that I liked so I thought I would take a peak. Within minutes my was really intrigued by the show, they were looking for a kidnapped girl who had diabetes! 

As the two police officers were headed out in hot pursuit of the alleged kidnapper, one turns to the other and states that "this could be really serious because the girl has diabetes." The other officers says that she had "Type 1 diabetes and has to have her insulin before she goes into insulin shock."  At that point I kind of went, huh?

Insulin shock is not a term that I use. I have heard it and was pretty sure it referred to a hypo. I continued to watch the show because I liked the fact that they were treating diabetes as a life threatening condition. When they found the girl and she was both very young and slim, I was even more excited.  As they wheeled her into the ambulance, the police officer yelled out that she had to have insulin right away.  I was left thinking, but they have to give her the right stuff. What sort of basal insulin is she on? Don't give her NPH! I am such a mom of a pwd! 

At that point, I basically quit watching the show but was determined to look up the term "insulin shock" in the morning.  Could I really be out to lunch or did a well-meaning show totally screw up with two little words?

This morning as I was going through my emails, I came across an article about Doug Burns.  He is the former Mr. Universe who was arrested for being drunk in public and resisting arrest when in fact he was low and trying to get some regular pop (soda for my American friends) to bring him back up. I began to read about his suit against the police department and there were those two little words again-- "insulin shock".  The article began "Douglas Burns, 50, of Cupertino, was showing signs of insulin shock and needed medical attention on the night of April 1, 2007". I knew that Mr. Burns had been low so I had to be right and insulin shock referred to having too much insulin in your body.

I still wanted to make sure so I did a quick Google search.  Sure enough Pub Med confirmed that insulin shock, hypoglycemia and low blood sugar levels were all the same thing. I was not going crazy. The media got it wrong again.  Darn!

They showed that diabetes was serious.  They stated that she had Type 1 diabetes rather than saying that she had "diabetes" or Type 2.  They used a young girl under 10.  They showed her sweating and a little out of it. They said she had to get insulin immediately or she was going to die.  The only part they had wrong was in saying so matter of factly that she would go into insulin shock because she had no insulin in her body. 

Once upon a time, this would create emails of outrage from many parents.  We would scream, yell and boycott the show.  I don't hear much of that any more (may be I am not listening in the right places). Today, I don't find myself as offended or as disappointed as I once may have been. I appreciate the effort. I am happy with the parts they got right. I hope that one day the media will get it all right but I am beginning to realize that mostly right is a decent place to start as well.

He woke up!!

This weekend we headed off for some relaxation and spring cleaning at the cabin.  We brought the ATVs, the axe and of course the Fantastik with bleach for the tough spots! Fresh air, a few good rides, clean surroundings, the sound of birds and wonderful company made for a great weekend.

But of course we could not leave Diabetes behind. Once again, the checklist was brought out...

Do you have extra strips?

Two bottles.

Do you have spare sites?

How many should I take?
One for every day we are gone. You can never have too many sites and don't forget a syringe or two just in case! Do you have cartridges?
Yep.
A spare meter?
I think so. Yep, its here!

Did you notice the item that we once again forget to check off from the list? Yes, after a near disaster this winter, we still forgot to add the vials of insulin to the check list! There is always insulin vials sitting on his dresser.  I was sure that he would add one or two to his kit.  What was I thinking??

Day two of eating, exercising, and fresh air... My son boluses his food and I notice that the plunger is pretty high up in his pump. 

How much insulin do you have in there?
Oh I have lots! At least ...um, well, there's 35 units left.  Is that bad?
Did you bring a spare vial?
Um, I think we have some left from that other trip.
Did you bring a spare vial?
No.
I guess you won't be eating much for the rest of our time here!
"What do you mean exactly by not eating much?" asks the human garberator also known as my youngest son.
I mean, you have enough insulin to cover your basal for 24 hours and a bit.
Oh.

On the upside, we were not going to be there for 24 hours.  The downside was there was still a marshmallow roast, breakfast (his highest insulin meal of the day), and a cooked lunch.  The upside was they had eaten most of the marshmallows the night before so that treat was pretty limited. He carefully monitored his food intake for the rest of the night. He had sugar free jello a lot and used an apple for a low.

Sunday morning arrived with sunlight streaming in our bedroom window.  I could hear someone up...and they were stoking the fire! This was good. My son is never up before us but I would enjoy the heat in the cabin and chaulk it up to him wanting to get out and enjoy his last day on his ATV before we went home. Eventually I got up, after I was sure he had everything organized for the rest of us. I told him how surprised I was that he was up.

I was low.
You were low?? And you got up? On your own??? Holy crap! Are you serious?
Yep, I was low.
My baby is growing up! You woke up to your low!!

I grabbed my son and gave him a huge hug. We were all in shock.  He will be spending time with his father over Easter and I am always worried when he is away from me and my CGMM system.  Could he really be sensing those lows in his sleep? I am not about to count on it. I am however going to be extremely grateful that he is at least occasionally (once in a lifetime could be considered occasionally right?) waking up to treat himself!

CGMM--Continuous Glucose Monitoring MOTHER!

Later this year it will be time again for me to start looking at new insulin pumps.  It is not something that I am looking forward too because I hate to part with our beloved Cozmo, the Lean Green Pumping Machine and there is just no interesting pumps out there at the moment.  Since the pumps won't be what attracts me, I began to think about the continuous glucose monitoring part.  Is this something that I should be looking at?

The idea of real time readings has an appeal.  The concept of still having some general data when my son fails to test has greater appeal.  The fact of yet another gadget attached to my son 24/7 has no appeal to either of us but safety is my greatest concern.

I thought about being able to sleep at night in relative comfort.  The Continuous sensor would give me an idea of whether or not sleep was an option for that night.  This really appealed to me until I thought about it a little more. Currently we are using a CGMM at night--a continuous glucose monitoring Mother.  It works quite well (knock on wood).  My son has never had a seizure.  His guardian angels have always managed to wake me up at just the right time when he was low at night. 

I don't sleep anyway so perhaps the CGMM is the way to go until he is older and thinking about leaving home. The plus to this system is of course the cost.  I don't think our provincial plan will cover sensors or a system.  I know my son's father would not be happy to have to pay for another diabetes expense.  This does not help monitor him during the times that he is away from me, but I have gotten pretty good at setting higher basal rates for when he is gone. 

The more I thought about a CGMS vs CGMM, the more other things began to float through my head.  For over eleven years I have been using the CGMM and thinking I was doing well.  What if a CGMS showed that I was missing a tonne of lows? What if it showed that I was doing a horrible job as a pancreas and putting my son's life at risk on a regular basis? Instead of alleviating stress, it would increase my stress level (something I really do not need). 

At the moment the Mother system is causing the fine lines around my eyes to deepen.  It sees me fall into bed each night exhausted but knowing that in three hours I will be up again.  It has increased the number of grey hairs that are finding themselves throughout my hair.  The upside? Well I am keeping the cosmetic companies going trying to find just the right creams to hide or erase those fine lines.  I keep the hair product people in business buying hair colors.  My nerves are okay not knowing about the lows that are rebounding thanks to his own glycogen stores. Perhaps a continuous glucose monitoring system is not in our immediate future and the continuous glucose monitoring Mother will continue along just fine.

Planning on planning a hypo

The other day I was asked to look through a package for children with diabetes to take to school. It detailed the roles and responsibilities of both caregivers as well as school staff. There was a section for parents to fill out regarding the care of their child.  I was less than impressed with this section but one thing that really stuck out was when the parent was asked to inform the school when their child would be low. 

Excuse me?? When will my son go low? Are you serious? If I knew that one I could prevent it. If I knew that one, I would not be looking at CGM technology or worry about him when he was away from me. Who comes up with this stuff?

Okay, there are some cases where lows can be anticipated...kind of.  Yes there is a chance he will go low after gym...unless he had pancakes for breakfast and he was probably high before he started so he will most likely be in range.  He might also be okay if we knew it was gym and he had lunch just before or if he was coming down with a bug or if he was going through a growth spurt, or....well you know the drill. 

In all fairness, there was a time when we fought highs right after breakfast. No matter what I did, it seemed that he was high so I could almost anticipate that but once I did, well Diabetes changed its mind and all was okay at that time. 

I wish it was that easy to predict when he will go low.  For example, last night we went up to the cabin for a drive. He ran around in the snow. He did some shoveling.  All in all he was much more active than he usual night of playing xBox and studying.  I had a sense that he would be low during the night. He had been in range for the past two nights so a small bit of activity could throw things off.  Had I have known "when" exactly he would have been low, I would have set a temporary basal and been able to happily sleep through the night instead of being up for 4 til 5 in the morning with a low that kept dropping after glucose tablets instead of rising.

In the past two days, I have read of a young man and a young girl who both were found dead in their beds.  I am guessing that if it were as simple as knowing when they would go low, both of these young people with diabetes would be alive and their families much happier today.

The scariest thing about the question of "when will your child go low" is not the question itself.  We have gotten used to the ignorance of the general public about the intricacies of diabetes care.  The scary part for me was that this is part of a package for children with diabetes going to school.  In many cases, these policies and information packages are created with the help of parents of children with diabetes.  How did they manage to overlook that one? Did someone in the bureaucracy just think it was okay to slip it in? So much more educating to do but jeez, wouldn't it be nice if we really could plan those hypos to occur--oh yes at 6pm according to my son!

The new rule for all hypos.

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


Later same night...

"I think I am low."

"How low are you?"

"2.8" (50)

"Get some juice NOW. At least you timed this one better but its not 6pm its 10."

"I know. I have to fix that. Lows are only allowed to happen at 6pm."

After a few minutes I saw him testing again. "Its too early to retest."

"I'm sure its been time."
"Wait a bit."
"Okay."
All was fine...for the moment.

Do you not understand a "snow day"??

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

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

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

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

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

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

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

As daylight began to think about appearing, I found myself awake again.  I could hear the storm that was forecast and was positive that it would be a snow day.  I waited to see if we would get that 6am phone call from the school's automated phone system.  Nothing.  I really didn't want to get out of bed. I knew that there was going to be no school.  Finally I saw the flash of red on my phone and knew that it was a message from the school.  BINGO! No school for today! Oh yeah! Back to sleep for me! Happy squirm in bed!

 Perhaps I should test him first just in case, I thought.  The bed was really warm though.  Did I really want to move and disturb anyone else? Look what happened last night. Okay, I got out of bed and guess what? Yes, we were back to being low.  He was only 3.1(55) this time.  Still not good but not as bad as during the night. More glucose and juice but this time I crawled back in my bed.  For some reason, I have this delusion that after daylight, he will wake if low and I will be off the hook.  I waited in bed, trying to fall back to sleep but no way.  I got up and retested.  Un-freakin-believable!! He was lower than he started! Super crap! Doesn't Diabetes realize that this is a "SNOW" day...as in a sleep in day? This is so not supposed to happen. More juice, more tablets and eventually I see an 8.6(155) and I am ready to hunker down and enjoy some extra sleep for our extra long weekend. 

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