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

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

My Petition to Mankind

Today’s blog week prompt challenges us to come up with our own online petition. There have been a few petitions circulating lately so if I had my choice, what would I petition for?

That is a real challenge.  I have read a few posts asking for greater meter accuracy and even petitioning test strips to find their way to the garbage can. I would of course love to see both of those things happen! I would also love protection for all children with diabetes in schools. I would love for cheaper air fares that would allow families to travel with greater ease to diabetes related events.

I think the thing that I truly want more than anything else is access to devices and supplies for EVERYONE!  I don’t care where you live in the world, you should have access to enough insulin, syringes, test strips, pumps, and CGMs. I cringe when I hear of anyone who can only test once a day (or less).  I cry when I hear of people barely able to afford insulin. My heart breaks when people have to choose which child will have an insulin pump because both children have diabetes but they can’t afford a pump and supplies for two children. That just should not be.

So pharmaceutical companies, governments of the world, humanity, I am begging of you…

  • Please ensure that everyone who needs insulin has access to  the best available insulin no matter where they live.
  • Please make sure that everyone, no matter where they live, have clean and sterile syringes.
  • Please ensure that all people living with diabetes have adequate access to the most effective glucometers and as many test strips as they need to manage their diabetes care to the best of their abilities. 
  • Please ensure that the most innovative insulin pumps are available to anyone with diabetes, anywhere in the world, who wants to use them.
  • Please ensure that Continuous Glucose Monitors are available to everyone who wants to use them as another management tool no matter where they live or how much insurance they have.
  • Please ensure that all people living with diabetes have access to the best possible tools, education, and devices regardless of insurance, race, financial background, or geographical location.

No one should have to make the choice between food and life, between electricity and insulin.  Let us become a humane and just society offering the best possible healthcare to all of the Earth’s citizens not just a select few.

Signed,

A mother who cares.

petition

Psst, You Need To Know This…not that!

It is day one of the fourth annual Diabetes Blog Week and my brain is challenged already! The prompt asks us to write about what you wish your diabetes team could see and what you don’t want them to see about your daily life with diabetes.

This is a real challenge for me because we are very independent in our diabetes care.  Our team seems to rotate players each time we go back.  Many of them are now well aware of the fact that we are confident and knowledgeable about diabetes and I like that. It’s not like we are new to this.  It’s not like I am guessing. I have been following the wisdom and guidance of some of the top diabetes people in the world for years–many of them are friends.

I would love for them to see those interactions. I think it may help them to understand the many connections we make and the great learning tools out there for people living with diabetes.  I would want them to see the amazing books sent to me and the questions I receive from others living with diabetes–this is what your patients need to know.

I would also want them to see that despite this knowledge and confidence, diabetes does not consume every waking hour of our lives.We behave as a normal family would and enjoy life, bringing diabetes along in everything we do only because we have to.

Diabetes does consume my nights and it has for over 13 years.  This is not something to be brushed off and I would love for all diabetes teams to remember that when they tell a parent that they are overreacting. This past weekend was my birthday and Mothers Day.  We celebrated with food and friends.  I tested my son at 3am on Sunday morning, found him high and corrected with his pump.

As I lay in my bed a few hours later, I began to panic.  My son had sat down to a movie with a tray of fruit in front of him. (I wouldn’t want our team to see that he weighed and measured none of that food) I began to wonder if he had properly washed his hands before going to bed? Did he had fruit juices on his hands? I never considered that at 3am but by 5am the thought was front and center in my mind. What if he was actually in range and I gave him all of that insulin to correct a non-existent low? I was scared to check him.  The joy of the evening before had disappeared. What if I had killed him? What if I had slept through a seizure and I had killed my son trying to help him?

By 6am, I forced myself to check him.  He had moved. His body was warm.  He was still high. He was fine.  I could breathe again.

This is something I would like my diabetes team to fully understand.  We, as parents and caregivers, live with this disease on a different level from many in the medical community. Living in the trenches is more than A1cs and following the Canada Food Guide.  We work to balance living life fully with diabetes and living life.  Please do not judge or trivialize this.  Please support us with the best possible tools and education.

To read how other bloggers answered this question, please click on the following link: http://www.blenza.com/linkies/links.php?owner=dblogweek&postid=02May2013h

 

Life is Short Laundry is Eternal: Book Review

Life is Short Laundry is Eternal Book Review Diabetes Advocacy

Life is short. Laundry is eternal is NOTHING like what I expected. What did I expect? I don’t know but I should have been warned of a few things before starting.

First I should have been warned NOT to read this book in public.  There are too many times that Scott’s writing evokes either tears or laughter or both.  This can be embarrassing and hard to explain when reading in public places. 

Second, I should have been warned that this dichotomy of emotions would start within the first 20 pages and continue for the entire book!

This is a book for everyone!

Because this book came in a package with a diabetes how-to book, I very much expected a book about diabetes.  I was wrong.  Diabetes is huge because his daughter has type 1 diabetes but diabetes is secondary to the book’s wisdom and insight.  I quickly went from…what sort of diabetes peeps should read this? To…my cousin and her husband should read this because they live this same life and I bet they can relate! To…my sons should read this. To…everyone should read this.

“Life is short. Laundry is eternalis about love.

No this isn’t a life-altering book with new and shocking revelations. Its a simple book about love presented in an honest and touching way.  Scott writes about his mother’s support, his love for his siblings, the relationship with his wife, and of course the developing relationship with his children from a unique perspective–that of a stay at home dad.

In this day and age, stay at home moms can be the brunt of ridicule   What do they really do anyway besides watch afternoon television?  The stereotype for a stay at home dad is a thousand times worse.

Scott breaks through all of those barriers and shows how important the roles of parents are–whether they are the ones working in the home or the ones considered the wage earners.  He shows the incredible value of both partners and how vital it is that they work to compliment each other.

There are so many noteworthy pages!

As I have written before, I can judge how good a book is by how many pieces of paper are torn and left as bookmarks to refer back to or how many pages are now marked with highlighter.  “Life is short. Laundry is eternal” sees a lot of both.

Scott’s reaction to an examination of his wife during their first prenatal visit upon finding out they were expecting their first child is both honest and hilarious…”I remember looking at Kelly and thinking, F**k, getting her pregnant is ruining all of the fun that boobs bring to my life!” and he manages to keep this tone up for the entire book.

We empathize when he drops his son or loses him in a store. We take to heart the amazing advice he provides on page 81 to “keep moving forward, ask for help when you need it, never give up, and scream at the top of your lungs once in a while, things should turn out fine almost every time. Maybe not as you pictured…but pretty damn good.”

And then there was the diabetes diagnosis.

My biggest mistake when reading this book was when I took it to my doctor’s office to read before my appointment. I was at the point when Scott and Kelly’s daughter Arden was diagnosed with type one diabetes.

I always have a hard time with diagnosis stories.  The fact that this little girl was diagnosed at 2 years old, the same age as my own son was, should have told me to keep the book in my purse and NOT read it in public but I didn’t heed the warning signs. Instead, I fought back the tears and pretended that I was there because of a cold.  So much of what he wrote could have been written by me.

“She was only two. Do little kids get sick like this when they’re two?” was so similar to the feelings that I had when my son was diagnosed. It couldn’t be that serious–could it? He was so small. Scott talks about feelings of “dread, anger, shame, and more pressure to be perfect than I had ever experienced” and I knew exactly where he was coming from.

Reading, “I wish that I could tell you that it only took a few days, weeks, or months to shake the feeling that type 1 diabetes brought to me, but in all honesty, it was much longer.  I didn’t begin to feel normal again for two years, and the interim was overflowing with new, frightening and potentially defeating daily situations.” Fit perfectly with the advice I had recently given people at a webinar.

This is a book about family.

Is this the book to read if you want to learn how to cope with life with diabetes? Perhaps it isn’t.  Diabetes is not the focus of “Life is short. Laundry” is eternal, living life is! Scott’s open and frank discussion about life, love and making the most of every memory is advice of value to all of us.  This book should be read by everyone who loves to laugh and values their family. His unique perspective and wonderful humor made this book a pure pleasure to read and a book that must be shared with everyone in your life–young or older.

Diabetes still isn’t sexy!

Happy Canada to all!! Here is one of my favorite posts inspired by a great parent of a child with diabetes….

October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word–cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don’t think its serious.  They are not sure if the awareness color is blue or grey…and aren’t really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The “its no big deal.” and “You worry too much.” comments that kill you.  I recently had a teacher ask me if we could arrange my child’s highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn’t work that way. 

It is hard to make people “see” what those of us who live with diabetes in our lives 24/7 “see” each day.  They don’t understand why we test during the night and deprive ourselves of much needed rest.  They haven’t had a friend not wake up from diabetes.  They don’t understand how quickly a low comes on even after you have recently tested.  They haven’t seen a child pass out in the middle of a playground because they went low and didn’t know how to tell you.  They don’t understand why we are so fearful of ketones.  They haven’t seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them. 

To most people, diabetes is that disease where you can’t have sugar (I mean its called “the sugar” isn’t it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don’t know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can’t see a pancreas.  Don’t get me wrong. I am very attached to my breasts and would love a day when we don’t have to worry about breast cancer but after years of being my son’s pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.
October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word–cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don’t think its serious.  They are not sure if the awareness color is blue or grey…and aren’t really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The “its no big deal.” and “You worry too much.” comments that kill you.  I recently had a teacher ask me if we could arrange my child’s highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn’t work that way. 

It is hard to make people “see” what those of us who live with diabetes in our lives 24/7 “see” each day.  They don’t understand why we test during the night and deprive ourselves of much needed rest.  They haven’t had a friend not wake up from diabetes.  They don’t understand how quickly a low comes on even after you have recently tested.  They haven’t seen a child pass out in the middle of a playground because they went low and didn’t know how to tell you.  They don’t understand why we are so fearful of ketones.  They haven’t seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them. 

To most people, diabetes is that disease where you can’t have sugar (I mean its called “the sugar” isn’t it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don’t know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can’t see a pancreas.  Don’t get me wrong. I am very attached to my breasts and would love a day when we don’t have to worry about breast cancer but after years of being my son’s pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.