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.

shoes
His dirty running shoes, my pasty legs

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.
shoes
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
True Color Image True Color Image

Bulls 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

True Color Image True Color Image

Life on a Fair Ride

My son has been running high at night for the past few nights. Sadly we could find all sorts of reasons but what was the real solution?

The first night he was high, and then higher but upon further examination, he had been eating and eating to cover what he felt was an impending low.  That could explain the increased readings over time…or we could need to change his basal pattern.

The second night saw highs again.  It wasn’t the same sort of pattern but there was still a stubborn high that would not go away.  Perhaps it had to do with the steak we had late for supper.  Maybe it was the site change that was due. Or we could need to change a basal pattern.

I finally got him to change his site.  I forgot to make the basal pattern changes soon enough. We had been shopping and then came home and watched a movie. Diabetes, beyond testing and bolusing, was not really on our minds so I decided to let things go one more night.  He complained that his canula wasn’t in properly. I asked if we should put in a new one. He asked me if I was crazy?  We let it slide.

I tested throughout the night. He was high again. He would drop a little lower. He would go a little higher.  Is the site bad? Do I change the basal rates?

Yeah diabetes is a simple disease. It’s all a matter of balancing food, insulin and activity, right? Until you also have a bit of life thrown into the mix and the potential culprits are so numerous that you feel like you just have to close your eyes, throw a dart and go with that change to see what happens.

Welcome to life with diabetes…life often lived on a rollercoaster with no obvious end in sight.

fair rides

Social Media and the Monster Under the Bed…What 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.

from www.diabetesmine.com
from www.diabetesmine.com

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.
from www.diabetesmine.com

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

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 Gets No Vacation…

Diabetes-VacationMy 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.