What's all the hub-bub, Bub?

Once again a celebrity has opened their mouth before thinking about what was being said.  Yesterday Rikki Lake mistakenly stated that Type 1 diabetes was preventable.  She never knew what a hornets' nest she walked into with those few words.  Very quickly after her faux pas on Good Morning America, social networks were abuzz with outrage that people with Type 1 diabetes were once again being "blamed" for their disease.

I admit that I did stand up and state that I thought she was a bit of an idiot.  I also stated that sadly, like diabetes, there is no cure for stupid.  I do believe that people coming out in the media should have their facts straight before they open their mouth.

The entire diabetes community was not up in arms about this as the furor might have suggested. I had a few friends who, like many of us, are simply tired of stupid.  They have decided not to get their undies in a twist over every misstatement made in the media and simply take solace in the fact that their children understand how serious their disease is.

I do appreciate that feeling.  I have reached a point where I do pick my battles.  I understand that there was a piece on the popular show "The Doctors", in which diabetes was discussed, Type 1 was mentioned but still the gist of the story could leave people thinking that lifestyle would "cure" Type 1 diabetes.  I can't be that picky.  They mentioned the two types, people need to be healthy, okay I am done.

When picking my battles, I do take exception to statements like that made by Miss Lake.  I do not expect everyone to be an expert on diabetes, but unfortunately when people are given the opportunity to be in mainstream media AND they are promoting themselves as somewhat of a health expert things change.  There are many people who watch them and believe what they say.  They do not research the validity of what they say, they assume it to be so because they saw it on a credible show. 

Again, the question was so what? Who are these people that believe everything they see on TV and how do they impact my life? They are your teachers, your neighbours, your politicians, and John Q Public who looks for a worthy cause to support each year. 

I know that most of these people should be smarter than that.  Should be perhaps but how much information does the average person glean from the media and do they tend to just take at face value? I read yesterday that a person refused to donate to the JDRF because they knew that kids were eating too much junk and their parents should be ashamed of themselves for giving this disease to their kids.  My two year old never had a piece of "junk" until he was much, much older and at that point it was in moderation and with an external source of insulin to keep him alive. 

The misinformation about diabetes (both Type 1 and Type 2) spreads much faster than true facts.  The diabetes community knows the difference.  We complain and occasionally, as was the case with Rikki Lake, sincere public and private apologies are made.  Does that change the big picture? Probably not.  We need to educate as strongly with "good" information.  Myth spreads like wildfire. Its just like gossip.  Truth and the real story is not pretty. 

Children drawing needle marks on their body was a powerful message that it did not run very long on public television stations.  The fact that people with Type 1 diabetes are still seven times more likely to die at a younger age than their counterparts gets shuffled to the back pages of journals, never sees the front page of a paper, and garners little if any media attention. 

So what does this mean? Do we sit quietly when stupid remarks are made? Do we not bother to educate because people aren't getting it anyway? No.  I think we educate more.  We groan when someone is stricken with "stupid" and then we work harder to "cure" them. They will never become as well versed as we are because their lives or the lives of their loved one's are not hanging in the balance but hopefully they will get one step closer to knowing that diabetes is serious.  Diabetes is deadly.  Diabetes is not a disease that anyone wants or enjoys.  It needs to be cured.

Where has all of the new technology gone?

Is it just me? Have I been in the game too long? Am I no longer in the loop like I once was?

This year brings our 11th anniversary of living with diabetes. Not nearly as much fun as a wedding anniversary but its better than the anniversary of my son's death.  When we first started down this road I was steadily finding something new.

We started on a "new" rapid acting insulin--Humalog.  Soon after, there was Novolog (or NovoRapid for those of us north of the US border).  After that we saw long lasting, peakless insulins like Lantus and Levemir.  We were the first patients that my son's doctor ever prescribed Lantus for and he was pumping at the time (Mom wanted to have some "just in case").

We started on an AccuChek meter that required at least 30 seconds to read and people were grateful for this "speed".  Soon meters were showing up that required 15 and finally 5 seconds to read.  The blood required was no longer a vial per test but a pinhead sized drop.  It seemed that every week there was a new and better meter to try. 

Insulin pumps were also changing on a daily basis.  Smart pumps were coming on the market and everyone was getting into the game.  There were four companies at least to chose from and everyone wanted your business so they each had features that made you take notice.

Continuous Glucose Monitoring was still something done with hospital equipment and a blinded machine but the GlucoWatch and rumours of more were coming.

Fast forward to 2011--We are still using the same meter we have had for the past three years.  We have the same pump that we started my son out on 8 years ago (it has upgraded slightly) and fear when we have to look at a "new" pump because it will not be as good as the current "Green Machine". There are three CGM systems available in the US but none of them are within reach of those of us without insurance.

We are fortunate that our province has an insulin pump program and as long as we live here (or until my son turns 25) he will have his pump and supplies covered.  They also will cover his rapid insulin because it is a must for his pump.  CGM systems remain a dream that must somehow become a reality before he heads off to university but that is a few years yet thankfully.

So am I out of the loop? I know that there are OmniPods and talk of micro-pumps have been in the works for well over five years but these things are not new and no longer excite me.

Am I just getting bored or not spending as much time researching as I once did? I looked forward to the advances in technology.  New meters were collected and used with serious scrutiny. There were better insulins and everything seemed to be moving forward at a breakneck pace. 

Today things seem slower.  There is still "cure" talk but I have grown calloused to such chatter. There is work on closing the loop but again, its not now and its not something I can put my hands on.  

I miss new gadgets and things that made me think that I was doing better by my child. 

Diabetes Holiday Sequel...or More Grey Hair

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

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

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

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

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

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

Diabetes has left the building...but will I survive?

The other night I got up and for a change I didn't first lay in my bed wishing that I didn't have to get up.  This night I woke up, pulled myself out of bed and felt almost sad that this would be my last night test for a few days.

My son has gone to his father's home for a few days over Christmas.  On the plus side for me (besides not having to get up and test) is that his brother will be home with me for a few days while he is gone. The downside is that I worry.  I am a mom.  I am sure its in the job description.  I am a mom of a child with diabetes--I worry a little more than normal.

Yesterday as he packed, all of his diabetes supplies were in his suitcase and carry on. He only had two pairs of underwear and one pair of socks BUT he had all of his diabetes supplies! I was impressed that he had his priorities straight.  I packed his log sheets and reminded him that he has a doctor's appointment the day after he comes home so his sheets had better be in tip-top shape. 

I guess I did not hide my fears of him going well. My fiance said that I was a wreck.  My son told me to relax and think about it as if he was just going to a sleep-over...and then got in a car accident! Well, you see a sleep-over would mean he would be home the next day but if he was in a car accident, he would be in the hospital a bit and delayed. Funny but that did not make me feel any better!

I worry that he will fall into old habits and testing will be something that is only done when he feels low.  I worry that he won't test at night.  I am nervous about him not bolusing. Yes, I know he has to be allowed to go and do his own thing but when he leaves my nagging...I mean my gentle reminders, he tends to pretend that diabetes doesn't exist any more.  That scares me.

His readings were perfect before he left.  Now you know that scares me as well.  You may be thinking that I am nuts but he was perfect here with testing, accurate bolusing and Mom knowing activity levels and bedtimes.  He is now out of my sight and beyond.  He will be up until all hours visiting.  He will be off in the country enjoying the fresh air.  His activity level will be different.  His carb counting will be different....my nerves!! Again, I am reminded by the stable force in my life that I will be in constant contact with my child.  I will be calling and texting. I will be asking for readings and making changes if needed.  He is only gone for six days.  He is only gone for six days...yes I am trying to calm myself.

He will be fine. He will amaze me.  He will be on his own, remember what he has been taught and will impress me completely.  I hope so.  I need to focus on the little bit of time I have with my oldest son and try to enjoy the ability to roll back over at 3am when I wake up but don't have to test for a few days.

Hi Hi Hi Merry Christmas?

Hi! Hi! Hi! Merry Christmas??? Well my son says that Christmas will bring changes.  I certainly hope so.  Life was coasting along okay.  Diabetes was just giving us its usual little bumps but all in all we were handling it alright.  Testing remained hit and miss but we had a few more hits than misses.  Diabetes must have realized that Christmas is fast approaching and we don't really have a lot of time for messing around with other "stuff".

We started out with a few highs here and there.  Perhaps some basal tweaking was in order.  Once that was done we ran into a new catastrophe--tubing breakage that went unnoticed for a few hours while at school.  He had spare sites at school but instead went through about 100 units of insulin filling tubing and correcting.  He was ketonic by the time he came home of course but quickly changed tubing, insulin and began to guzzle water. I was proud that he handle things on his own and took charge of his care so thoroughly (once he got home).  Thankfully he was a lot better within a few hours.

Next came the night time snack with no bolus to cover. He was high and felt ill during the night but quickly came down with a correction. Finally we just had highs.  Pancakes are evil and lead to highs. Growing also leads to highs.  Pancakes we can extended bolus for.  Growing is going to take a bit more work. The shirt I bought him during the summer on our vacation is now too tight.  The running shoes he had for school no longer fit.  The child I looked down on, now looks me in the eyes. This growth thing is going to take some serious insulin to cope with.

Its funny, when my oldest son would grow I would just hate to see my baby getting so big and my wallet would hate to see me having to buy new clothes so quickly.  With my younger son, again, I can't believe how quickly he is growing, clothing him is not cheap, but we also have the added grey hairs of trying to guess at basal and bolus rates.

Life can't be simple when diabetes moves in.  Of course these little quirks in otherwise, decent blood glucose levels are occurring in the month before we go and have another A1c done.  We were going to have this one in a much better range.  I am not as hopeful anymore.  We now have errors, puberty, and Christmas holidays all to mess with life. 

Last night I thought how much simpler things were when I had full control.  I fed him.  I tested him. I bolused for his food. I logged.  It was a lot of work but he didn't eat around the clock like he does now.  I could keep readings in range.  Life was simple.  Now he does things on his own. He can cook.  He eats enough for six small children and he doesn't need Mom around at all functions.  He does his own WAG for carb counting (and usually he is pretty good at it). Mom sits in the background as the constant voice of "Test. Bolus. Log." 

Somehow we will make it through the holidays.  We will survive the results of another diabetes report card (aka the A1c results).  We hopefully will even survive puberty!

May your house be filled with love, laughter and great blood sugar readings this holiday season! And the best present of all? Let's hope that Diabetes takes a permanent vacation soon from all of our lives! Merry Christmas!

Mere Mortals

I roll over wanting to just cuddle in and enjoy the warmth and coziness of our bed. As I roll, I glance at the clock and see that it is 4:30am.  I had better get up and test my son.  I don't want to move.  I am so very comfortable.  That doesn't matter. Out of bed I get.  I stumble in the dark, trying not to disturb my fiance and not fall into any of the bedroom furniture. 

Housecoat on, I head into my son's room.  Again I navigate in the dark to find the lamp and his testing supplies.  I find his glucometer close to his XBox and prepare the device for a test.  During the process I am praying for a good reading but the meter tells me otherwise.  He is high.  Crap! Okay, new cartridge and all, let's just hope its the high fat lunch still messing with him.  Correct and head back to my bed. I will be up again soon so I don't worry too much.

Less than four hours later I am up.  He has no school so he continues to sleep.  I take my time and cater to my own needs before creeping into his bedroom to do a morning test.  With some guilt, I head to his room about twenty minutes later.  I go through the same routine and test his blood once again.  He is still high...higher actually. Dang! Not happy. 

I grab his pump but before I can input a correction I see "delivery stopped". What the?????
How long has his pump been off for?? What happened? How did he sleep through the alarms? How did I sleep through the alarms? When the heck am I supposed to sleep??

I get the pump to restart and then began to figure out where the history is.  My son can get his pump to do almost anything but Mom doesn't use it as often any more so it takes me a bit longer.  I find the history and about 2 minutes after I bolused the 4am correction.  A blockage was detected and the pump shut down! More Mommy guilt. Did I really crash that fast last night? What is wrong with me? How did I miss this?

Thankfully the pump is working fine now, site is good and child is okay. He said he felt a little ill earlier this morning but now is up and being his usual nutty self.

I have been dragging myself out of bed at the wee hours for more years now than I can count. Lately I wake up wondering why? Why do I have to do this? Can we please have a break? Today reaffirmed why I have to do it but when am I supposed to sleep? How am I supposed to be chipper and ready to deal with the rest of my life when I am dragging my butt from broken rest?

Oh well, enough of the whine and cheese party.  This is our life.  I swore once that I would do anything as long as my son was alive and I still stand by that.  No one told us life would be easy but a bit of good, guilt-free sleep would be nice now and then.

Diabetes isn't enough?? I have to deal with teen-itis as well?

The holidays are quickly creeping upon us and my brain is about to explode.  Life continues.  There is never enough time in the day and I am so grateful to have a man in my life who is getting Christmas dealt with around me. Our yard looks great, I am getting things slowly organized inside, and as I dawdle along he is busy putting things up around me.

So why is my brain ready to pop its last wire? As always there is a tonne of things to do each day and never enough time.  Log books have fallen behind.  Blood glucose tests have been missed.  Highs are happening...oops so are lows and in the midst of all that? Well I have not one but TWO teen aged boys.  I am too young for this stress.

You see, my oldest son does not have diabetes.  I have spent over ten years focusing on diabetes and in the past four years, dealing with some teen issues now and then.  My son thinks he is perfect but he has had a few teen moments that have added to my steadily growing crop of white hairs (yes Mom, my hair too is going white not grey).  He will soon be legal to drive and that scares me.  Teen boys behind the wheel, showing off for their friends.  Car crashes, alcohol use, drugs, girls...YIKES! but he doesn't have diabetes so that is my only worry with him.

My youngest son however has diabetes.  We battle over log books, testing, bolusing, etc.  I worry about highs and lows.  I worry when he is away if he is testing. I worry when he is at school because I don't know if he is taking care of himself. I worry about complications when he is a young man.  Now that he is getting older, we are starting to have to throw in the same other issues I dealt with previously in my first child.  Isn't it enough to have to deal with diabetes but now I have attitude and teen wings to have to deal with?

I have to say that attitude has never been a prolonged problem with my boys. Grades have been a lifelong issue but you can work diabetes into the mix there.  "Yes, you need to study more and see? If you had been logging and testing we would have had you in range and you would have more easily understood what was being taught." He says he gets it and he needs to change but he is a teen. He is smart. He thinks he knows what Mom wants to hear. The talk is cheap.

The latest hurdle is the teen need for power and to run with the big boys and their toys.  Images that haunted me with child #1 are flying back with a vengeance with child #2.  I may be the major caregiver when it comes to diabetes but I am thankful to have someone in my life now who can help me drive down this road called adolescence.  The diabetes road has me used to the nausea that comes from its unexpected turns and twists.  I cry, I get frustrated, but I know that I am doing my best to keep him safe. The teen road has some familiar bends but losing my stomach around certain corners leaves me counting my blessings to now be driving with someone who can take those corners with greater expertise. The teen road has too many blind turns where I have no control, no say, and no ability to protect.  Its the hardest part of being a mother for me.  Dealing with the stuff that I have no control over.

Even with diabetes, my control is so much less now. I can't control his eating. I can't control his testing. He is becoming independent and that may kill me yet.