A Mile in His Shoes

When my son wakes up in the morning, the first thing he does is check his iPhone.  He eventually gets out of bed, does what needs doing in the washroom and then begins to scrounge through the cupboards in search of food. Once all of this is done and he is ready to eat, he pulls his meter out of his pocket and tests.

I constantly ask why he doesn't test as soon as he wakes up? When I wake up in the morning, and it's not a school day, my first stop is his room to test him.  After that I do the rest of my morning routine but testing is first on the list before all else and it's not my body.  Why can't he do that, I often wonder.

Today I thought about it a little bit more. For years I have questioned things like forgetting to bolus.  He has had to have insulin with his food for as long as he can remember and long before that. How can he forget to bolus?  How can he go for days and days without changing an infusion set? Doesn't the adhesive begin to annoy him? And the list of questions go on.

But what if I was the person living with diabetes? Would I still be as diligent? I have a hard time sticking to a diet.  I can do a new exercise routine for three weeks and when it is supposed to become habit, for me it becomes annoying and I usually come up with a thousand excuses and eventually stop. How would I then handle a routine that had to last me for the rest of my natural life?

I could count the carbs at every meal. That is habit. I do that all the time now.  In fact, recently a friend and I were out to dinner. I was ready to tell him how many carbs in his supper when I realized that it wasn't necessary.  We didn't need to count the carbs.  My son wasn't there.

What about site changes? The other day, my son said that he should get to do one on me in exchange for all of the infusion sets that I have put in him over the years. I declined. Would I be like him and put off changing them for as long as possible? I would probably need to use numbing cream ( he hasn't used it in years).  The noise of the insertion launching device would freak me out. I would probably also be looking for someone else to do it for me so I didn't pull away.

Testing? Would I test as often as I should? Possibly. I might be okay here because I would have to use AST.  I have tested on my arm before. It was completely painless. That amazed me! Lancing my fingers?? Well that would take a lot more effort and my son makes it look like no big deal.  Once again, what's with the big bang of the lancet? That noise scares the begeebees out of me! I wouldn't be worried about drawing attention to myself in public because...well I just don't really care about stuff like that most of the time.

If I walked in my son's shoes, would I be better at my care? Perhaps but I am a bit older than him.  If I walked in my son's shoes when I was 15, would I be better at my care than he is? I remember what I was doing at 15 and 16 years old.  Diabetes would not have been a welcomed addition to my awkward new life.  I'll have to try to remember that a little more. I am trying but when your child's life depends on something like insulin injections and blood glucose testing, it can be hard to remain relaxed and easy going. I will work on focusing how ill-fitting his shoes are when I try them on. They are his shoes. I can lace them for him but he will one day have to walk in them alone...and as a mother, that still remains scary.

His dirty running shoes, my pasty legs

Bull's Eye!

For days since my son has been home we have been working to get his bg levels straightened out.  We have been testing and questioning. Was the ice cream we had bolused correctly? Does he need a site change? That is a new site. Is it bad? What about that steak dinner we ate at 7pm? Is that causing a problem? How intense was that workout? Did he over compensate for activity? The list of question and possibilities were endless.  A concrete answer was much more elusive.

We decided to change his basal pattern. Imagine my surprise when I saw that he was using a “school” basal pattern.  What the heck? Did he accidentally switch when he was making changes over the phone last week? He was sure he didn’t.  I was at a loss but quickly made the change back to our “weekend” aka “vacation” basal pattern.  As I moved through the days of the week, I realized what had happened...weeks ago, when school was ending, we changed his rate over to all “weekend” BUT he had one day of school to do.  It was a Thursday and we left that day as a “school” day because it was! Unfortunately we forgot to change it over and all Thursdays since had been the wrong basals.

All was fixed. The basals were all as they should be.  I made a few small adjustments and life should be perfect!

Wrong.

What to do? We waited to see if the changes would take effect.

They didn’t.

We changed the site again.

We were out of ideas and my son was running way to high for my liking.  He felt okay but was getting tired of my telling him to test for ketones. It was time to break down and do an early site change.

The new site was put in.  A correction bolus was given. We continued on with our evening. We didn’t have to wait long to see results.  By the end of the movie we were watching, his readings were dropping back into range.  I tested 3 hours later...he was 6(108)!!! Wow! That was awesome. We hadn’t seen a six in a few days! I worried that we may have over fixed things. Would he drop? Two hours later I tested again.  He was 7.1(129).  This was amazing!!!  In range!  Perfect readings! Happy, happy dance!!!!

Could this really last? You betcha!!! When I got up a few hours later he was 6.7(121).  It was  a night of pure perfection! We had conquered diabetes for one night. His basal pattern was bang on! We had hit a bull's eye!! Tomorrow may be different but I will take the victory while I can!

Barb and son 1 Diabetes 0

Socia Media and the Monster under your be...A Great Watch

I just watched the Friends for Life Video of the seminar on Social Media and The Monster Under the Bed.  I had wanted to catch it live when it first happened but of course I forgot that it was ongoing.  I was really excited when I saw someone had posted a link that would allow you to watch it again...and then I lost that link.  Needless to say, when I saw it posted on a friend's Facebook page I pressed play instantly!

I was happy, but not surprised to see Jill Weissberg-Benchell note immediately the importance of the Diabetes Online Community.  (I have been privileged to spend time with Jill at CWD conferences here in Canada). She noted the value of a group of people (real or online) who "get it"!! She further told her audience that 97% of posts onilne are accurate so those who are afraid of the "bad stuff" that they may find in social media circles are really only afraid of 3% of what's out there.  That is pretty impressive statistics.  

The panel further noted that the DOC (Diabetes Online Community) is not about medical advice, its about support! Its about someone to talk to a 2am when you are awake and dealing with a low. Its about someone who knows how to keep an infusion set in place when swimming.  Its about the little things that you don't always think of asking your diabetes team.  Its about instant access to information and help.

The experts were asked about how to involved lurkers in the online community and again great advice was given--the fact that they are reading means that they are learning and engaged. I have seen this often in groups that I have been a part of.  A small number of people seem to do all of the posting or answering but every once in a while, you will see a person pop up and say "I don't post often, but thank you so much for all that I have learned from you! Just hearing others going through the same as me means so much!" Get the message out there and people will listen. 

But then came the question of how do you establish what a reputable blog or website is? There is the HON code which requires that health related sites meet specific criteria and registered sites are monitored regularly (sites like www.childrenwithdiabetes.com and www.diabetesadvocacy.com are recognized). They also suggest that you consider sites that have been around for a lot of years (just so you know, www.diabetesadvocacy.com has been around for about 12 years...wow where did the time go??).  Finally, to look at sites or blogs that are recommended by friends or other reputable sites.  To involve your health care provider, you can even give this list to them so that they can share with others.

All in all, Korey Hood summed up the role of the DOC best when he said that the online community is like your basal insulin. It is a constant presence that is there for you at all times.  "In real life" interactions are big boluses of insulin. They are amazing surges that help us to keep going until we meet again.

I am so glad that I had the opportunity to view this video and would encourage others to do so as well. There are many great exchanges including a debate on parent blogging when panelists actually disagree (see the post at Our Diabetic Life for more details).  This video shows that the DOC is here to stay so adjustments and acceptances need to be made.

Dear Diabetes

Dear Diabetes;

I am done. Finished. Resigning.

We have been doing this dance for 13+ years now and instead of getting easier it's getting worse.

My son is now almost 16 years old.  I can no longer keep him safe and with me at all times. I can no longer do all of his testing, carb counting, and bolusing. I have to let him go off on his own and stumble (or even fall) and I HATE IT!!

I have already done this "letting go" thing with my first son. I get that. He chose to live with his father for his last two years of school. I learned how to parent from a distance.  I learned how to let go a bit more when he moved across the country a few months ago.  It was hard but I understood it was/is part of life with children. 

I worried when he started to drive and got his first car.  I survived the call that said “Mom, I was in a car accident. I wrote off my car.” I made it through the phone call that said “I was out drinking with friends at a festival. We got separated and these guys jumped me.”  I was okay with the calls to pick him up the next morning because he had been out drinking all night, celebrating the end of his course, and had passed out at a friend’s house. These are all things that can happen when we have children. They are part of our lives as parents.

Diabetes, you change the rules and the level of worry.  I worry about my son with diabetes anytime he is away from me. I know that he will try to pretend that you don’t exist. He will skip testing. He will bolus for some of his food but will try no carb food to avoid drawing attention to himself and his pump. He will do his best to appear "normal" to his friends and will treat you as if you are not even there.

When he comes back after time away, instead of simply reliving his adventures, I am stuck dwelling on missed bg tests, high readings and diabetes care neglect. I feel panic levels rising as I know what damage you can bring Diabetes.  I know how dangerous you can be when neglected. I try to remind him.   I know that he wants to forget though. For those few days when he is away, I almost get to forget but he can’t. You are too dangerous, Diabetes.

He is now at an age when I have to worry about drug and alcohol experimentation.  The worry goes up ten fold because you are there.  Diabetes, you are not a helpful friend. You are an insidious enemy ready to further sabotage his attempts at stretching his wings and experiment with life. I am lucky.  My son has not showed a lot of interest in wild parties and such behaviour but thanks to you, I have a hard time focusing on how lucky I am.  I am forced to fret over how you are impacting his life when I am not there to stand guard and act as a buffer.

Diabetes, we have been doing this dance for a long time.  You jab, I duck.  You hit, I push back.  I have been forced to demand things of my second son that I never did of his brother.  “Did you bring your meter? You are NEVER to leave the house without it! This is non-negotiable.”

“Did you remember to bolus for that food when you were out? How many carbs did you figure for it? Did you factor in the activities that you had been doing before/after?” 

“Is that a new site? Make sure its secure before you start swimming.  Do you have a spare just in case? You may need more than one. Make sure you have someone to watch over your supplies.”

These are all conversations that have been had with my son since he was old enough to head off on outings without me.  His brother has never had to worry about the fat or calories in his meals.  He has never had to carry anything beyond his cell phone in order to stay safe and alive. 

Diabetes, you have robbed us.  You have stolen my son’s innocence. We have been cheated out of a carefree lifestyle.  You have made us both worry and obsess over his health when he should be concerned with looking good for this week's love interest, not worrying about his blood pressure. 

Diabetes, I have had enough.  Really, I am done. Please move on to a rock or some other inanimate object.  People don’t get you and even those of us who have been forced to...well, we are just tired of you.  Life is enough of a challenge.  Your constant presence just makes it that much worse, that much more painful.  Its time for you to leave. Please leave no forwarding address. Please take everything that belongs to you and simply go. 

Sincerely;

A Tired D-Momma

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.

Raising Teens with Diabetes...Book Review

"Raising Teens with Diabetes. A survival guide for parents" by Moira McCarthy arrived at just the right time for me. I had heard that she was writing a book and it had been published. Thanks to the interwoven world of Facebook, I had seen her posts in groups that I belonged to as well as comments from mutual friends. I was therefore really excited when the folks at Spry Publishing asked me if I would like to read an advance copy of the book.  My son with diabetes is just a few months shy of 16.  We are knee-deep into the teen years and tips for handling drinking, driving, and letting go are definitely all things that I welcome with open arms!

Each chapter of this book opens with Moira's own personal stories.  In chapter one she gets us started by introducing us to the world of "Hurricane Hormone" and advises us of the horror ride that both parents and teens are about to embark on.

Moira's daughter was young when she was diagnosed with diabetes, so much of the book looks at burnout of both parent and teen after years of dealing with this disease.  As a parent of a child diagnosed at two, this was definitely a welcomed perspective.  She does not exclude those diagnosed at a later age though or even those who were diagnosed in their teen years or later. Chapter three is dedicated to those children struggling with their adolescence as well as a new diagnosis.  Short asides, from people like Moira's own daughter as well as well-known bloggers and the JDRF's own Aaron Kowalski give a wide perspective on this topic.

"Raising Teens with Diabetes" looks at family dynamics, the role of siblings, and the role of friendships--old and new with some great tips and pitfalls that many parents fall into. Moira warns of making your child's friends the "diabetes police" and suggests ways to use friendships to help your child without going overboard.  She further touches on the more quiet or shy teen and how to ensure that they tell their friends at least the basics in diabetes management and care.

As the book nears the halfway point, you are now beginning to learn how to set the stage for adulthood.  Moira looks at school and letting go--allowing your child to be more responsible for their care in a safe setting, setting limits and having consequences that fit the action.  She talks about the rules for driving and how vital it is to stick to them.  Since my son will be legally able to begin this process in a matter of months, I read keenly wondering if we can both stick to these guidelines and knowing how important they truly are.

This book even talks about sex! I instantly was hooked when Moira's first suggestion when handling dating and then sex was "...go on every single date with them, forever and ever...and this will not be a worry."  I loved it! My sons would definitely not agree however.

By Chapter 10, we are faced with another teen challenge--Drinking! It terrifies me.  My son is very private. He does not talk about diabetes.  He does not hide his testing or bolusing but he does not advertise it or talk about it either.  A few of his closest friends know about it.  His best friend has a good idea of what to do but who will help him when he and his friends decide to drink?

This book offers a great chance to talk to your teen about these subjects as you read.  I would often bring up topics as they were covered.  "Did you know..." or "Wow! This book says..." were great conversation starters. We were even able to talk about erectile dysfunction! In the early chapters, Moira's warns that teen males exposed to tv commercials may quietly be concerned about this complication. My son shook his head and swore this was not something that he had remotely considered or knew about.  One problem overcome already!

Drug use was something that I had somehow not considered until it was brought up in the book. It is something that I have thought of and talked to my oldest son about but drugs and diabetes? It was not a topic I had ever considered...how naive was that! I was therefore really grateful to have the topic mentioned.  In modern society, it is definitely something that needs to be discussed and prepared for as much as all of the other topics.

I also had my eyes opened to a new view with the section on rebellion. Moira writes about the first time her daughter lied to her about a bg level and how things spiralled out of control until she ended up in ICU.  Her daughter said she got a test of "the drug she's struggled with for years.  That drug is called freedom.  That day,(when she lied about a reading) she realized that I trusted her so much, she could pretty much do or not do whatever she wanted.  The idea of not checking was so delicious, she still says today she thinks she must know what drug addicts feel like when they try to detox.  She skipped testing more and more...And she told me after she landed in the ICU and almost died, as sick as it made her feel physically, the emotional high of DENYING diabetes any power in her life...made that horrid feeling all worth the while."  Even rereading this passage still makes me want to cry.  I "get it". It hurts me but I "get it".  I understand a bit more why my son "forgets" when he goes away from me. It's not just about feeling so great that you forget you need to bolus/test, it's about denying diabetes.  I wish that they could.

I appreciated Moira's honesty when she noted that she had once thought that her daughter would never rebel.  That that sort of thing was something that happened to "other families".  I have always known that this could happen to us.  I have also looked on to some of my friends and wondered, "how did they get such perfect kids? They never seemed to have any issues."  I have also watched some parents struggle to do everything that they could with non-compliant teens and somehow manage to come out into adulthood with amazing young people.  I know that "this too shall pass" and "Raising Teens with Diabetes"  gives some wonderful tips on how to handle the rough ride until it does.

If you have a teen with diabetes this book is for you.  If you have a child who will grow up to be a teen with diabetes, keep this book around for later years. It will come in handy! Thank you Moira for giving new things to think about and a wonderful tool to refer back to.

I Retire!

I am almost through Moira McCarthy’s new book “Raising Teens with Diabetes”.  There are so many really great things that I will share with you soon in a complete review but last night I hit the section on advocacy.  Obviously I am heavily into diabetes advocacy, I mean I used it is the title to the blog and my website! My son on the other hand is the complete opposite.

I have never been one to stay quiet about my opinion.  I have always believed that if you don’t say something how can you expect people to know what you are thinking? If you don’t like something, say something to people who can make a difference.  That has been my motto since my preteen years (yeah I have been a mouth piece for a long time!).  In my defence, I don’t just shoot off my mouth, I try to listen and learn as well but back to my son...He is quiet.  He is private.  He hates to talk about diabetes.  He does not enjoy diabetes related functions and suggesting that he become an advocate would be like suggesting that he light himself on fire and run stark naked through Main Street. It is not about to happen!

How do you balance such diverse personalities? Carefully! As my son has aged, he became more vocal.  At one point he literally told me that he quit! We had been involved in a national diabetes campaign a few years earlier.  He was okay with it at the time. It meant a trip to Toronto (but he hates to travel) and a few cool interviews for both tv and print media.  That was okay but the second time around was more questions about diabetes and another photo shoot.  He was done. No more photo shoots. No more being in the “public eye”.  He was retiring at the ripe old age of 14!

I agreed.  I allowed him to slip into anonymity.  Diabetes became something that he had to deal with but the advocacy and the public “stuff” would simply be for Mom to deal with.  Ironically he seems to have a lot of confidence in my abilities (and maybe that explains why he “retired” with such ease).  When we have talked about the future, costs of medical devices, and such, he simply reminds me how many years I have to get the governments to all straighten up and keep him healthy!  (in other words have insulin pumps covered everywhere in Canada for everyone regardless of age).  A tall order from a young man!