Diabetes Diagnosis day…It slipped my mind

17 years of diabetes
Celebrating 17 years of health and wellness

It slipped my mind…sort of…well, more so than ever before. Today is the day that Diabetes turns 17 years old in our house.  Strangely, it hasn’t consumed all of my thoughts this month.  I haven’t planned this post for weeks in advance…in fact I actually had another post planned for this week when I realized the date!

That is unheard of for me.

Every March I think of two things…what will I get my oldest son for his birthday and how long diabetes has been a part of my youngest son’s life.

This March has been a bit different.  I was busy this March with other things.  For the first few days of the month, I got to spend time with my nephews after not seeing them for a  few years.  I was able to meet my youngest nephew for the very first time.  We enjoyed cuddles and goofing around.  It wasn’t until I was home that I thought about his little life and the life of his older cousin–my youngest son.

When my son was his age, he was being stabbed with a needle somewhere in his body 5+ times per day.  At the age of 3, his little fingers had tiny marks from testing his blood glucose levels 8 or more times per day.  My sweet little nephew had bruises on his knees from playing outside with his trucks.  When my son was that age, he had similar bruises but there were also bruises that would sometimes find his arms, legs or stomach after an injection.

I am so glad that none of my nephews have had to go through this.  I remain in awe of how well my son has managed to cope.  He won’t even notice this day.  Life with diabetes is all that he has ever known.  For him, it is simply St. Patrick’s Day–an excuse to go out with his friends and have a beer.

Today I will pause as I always do.  Most likely I will message a dear friend whose son shares this “dia-versary”.  On this day, I will be extra grateful for the many incredible and lasting friendships that diabetes has brought into my life.  I will also take a moment to cry for the friend who lost her child last year–we were brought together because of our sons’ common diagnosis of type 1 diabetes.

Today I am sure that I will slip back in time for a moment.  There will be a pause in my day when I vividly recall the lifeless child that I held in my arms 17 years ago.  I will remember the prayers that I said and the prayers that were offered as we rushed to the hospital.  At one point today I will see, in my mind’s eye, the doctor who sent my son to ICU and told me, “if he makes it through the next 24 hours, you will need to learn a lot about diabetes.” The phone calls, the terror, the uncertainty will all come flooding back just like it was yesterday.

Today I will quietly cry for the life that was lost but I then I will wipe away the tears.  As I tell others, today is about celebrating.  Today marks 17 years that my son has lived strongly with type 1 diabetes.  He has never let it stop him from doing anything–except for shoveling the driveway in the winter.  He seemed to often be conveniently low as a child during that particular chore.

My son now manages his diabetes his way. I don’t test him.  Rarely do I know what his blood sugar levels look like.  I can’t tell you his insulin to carbohydrate ratio or even his basal rates. Diabetes is his disease to handle now.

It hasn’t all been perfect. There have been stumbles along the way.  I still remain there to help when asked.  We discuss carb counts or extended boluses.  I still do site changes when required. Seventeen years later, we are both finding our way but he is healthy and thriving.  I can ask for nothing more…except a cure of course.

Mothers Day Reflections

In North America, Mothers Day is this weekend.

I have seen that JDRF Canada is doing promotion this week on #Type1derWoman  This looks really fun and I can’t wait to see more.

A few years ago, the DRI did a segment on the Real Moms of Diabetes.  A few of my friends took part. It was equally as moving.

And of course there is the incredible poem written by my dear friend Linda Kaniasty that mothers in the UK put to video.  It still makes me cry.

All of these posts have me thinking about life as a D-momma.  My role has changed a lot over the past 16 years.

I started out as the mother of a toddler with diabetes.  I was lucky.  He didn’t mind the shots.  He was okay with finger pokes.  He hated to eat however.  That was a challenge.

If I had it to do all over again…and it was 2016 and not 2000, well I would be putting him on a pump right away.  There is no need to fuss with injections, a pump would give us the flexibility to let him eat the way  he wanted.  I would have a CGM so that when he fell asleep, I would know if he was just napping versus having a low and couldn’t tell me.

I would still use bribery.  Stickers and rewards were a fabulous way to get through everything from potty training to meal fights.  I would still allow him to inject and have control of the diabetes care for his toys.  This was a great way to give him power.  I would still worry and log like crazy but that is me.

Eventually my toddler grew and went to school.  The worry again was tangible.  I had friends who would be watching out for him in school but I was terrified.  There was so much that could go wrong.

If I had to do it again, I would have released the terror.  He was left in the care of teachers who truly cared about their students.  He had friends who cared about him.  They all would do their very best…or call me if in doubt.  I didn’t need to hover. I didn’t need to stress–as much.  It was okay.  Yes, there would be wrinkles along the way but they were small. He would survive.  We would all learn. It is important to relax a little during these years as greater challenges will come.

As my child became a preteen, the issues again changed. We struggled to find a balance between what he should be expected to do and what I should be expected to do.  I ached that he was expected to do so much.  I grew frustrated when one of us failed.  If I had to give myself advice for that time looking back it would be that it will be okay.  You will find your way.  If he didn’t die,  learn from it…both of you.  Work hard. He is listening in his own way.  It will be worth it.  He can stumble a bit.  Its okay to wipe his knees but he will get it.

When my son became a teen…well didn’t that change everything!  There were now hormones.  There was the teen brain.  There were struggles.  There were worries.  How do you balance allowing him to be a normal teen (with all of the worries that comes with that stage) and being a teen with diabetes? You ask for help.  You reach out to those who have been there…and you pray.

As a teen, my son decided that he knew it all.  He decided that he really didn’t need the care of Mom any more.  He moved away and decided to finish high school while living with his father. I foresaw many problems.  Some of them came to pass…some didn’t.  I felt like a failure. I was a parent whose child didn’t want to live with them.  People reminded me that it wasn’t about me, this was about him.  It still hurt.  My one clearly defined role now became more blurry than ever.

My son is now a young adult.  He is 18 and learning to live with the choices that he has made.  He has stumbled.  He has tripped a few times but he has done okay. He is getting stronger in more ways than one.  He understands his body he tells me.  He is tightening his control.  He has learned. He knows he can still come to me when he loses his way.

So what would I tell that Mom of a toddler now? You’ve got this.

What would I tell that mom who is watching her son head off to school? The school and his peers have your back.

What would I tell that mom of a teen? He really did listen and learn when you were sure he wasn’t.  Somehow you will both live to go through another stage of parenthood.  Some days will hurt but most days will be a blessing because when you look back at where you have been, where things could have gone? Life is amazing!

There are still challenges.  We still have a long road ahead of us.  No matter how old my children are, I am still their mother.  They are still my children. I worry. I care. I love them deeper than I could have ever imagined.  They make me shake my head at times but they also make me proud.

For all of you fellow D-mommas, take a moment and be proud.  Be proud of YOU and all that you have accomplished when faced with this huge burden.  YOU are amazing!

liam barb sept 1999b

 

 

Dear Diabetes, You are 16 now…

1966-chevrolet-corvette-stingray-427-green-silver-3

Dear Diabetes;

You are 16 now.

You are old enough to drive.

You are old enough to date.

You are almost old enough to be finished high school and looking towards a new career.

You are old enough to be looking forward to life on your own.

Unfortunately you don’t have any of those plans.

You are a bum.  You refuse to move on to greener pastures.

You have learned nothing after 16 years.  We have found new treatments to fight you. We have continued to live life to the fullest even when you tried to drag us down.

We have made incredible friends even with you clinging on in the background.

We have continued to live a full life even when you decided to make life horrible by sending blood sugars dangerously high and made my son ill or dropped them low so he had to sit on the sidelines while his friends played.

Diabetes, I have had enough of you.  You no longer wake me up at night. You no longer consume all of my thoughts. You still wake my son however.  Your demands still inconvenience him.  You remain as inconsiderate as ever after all of these years.

I would love nothing more than to kick you out of his life.  I would buy you your own car and send you on your way.  Unfortunately that can’t happen.  You are still with my son after all of these years but guess what? Even when you tried to kill him 16 years ago, he survived! No matter what you have thrown at us, we have survived! It hasn’t been easy.  It has cost us a lot but we are still going.  He has grown to be a strong young man.  I have developed a voice that reaches people in places that I never imagined.

Its been sixteen years since that horrific day when you barged into our lives but we are still strong.  We are still fighting you.  He is still healthy and we are winning. You are still an unwelcome intrusion that we simply tolerate and move forward despite.

 

Dear John and Jane Public

Dear John and Jane Letter Diabetes advocacy

I understand that you probably know very little about the reality of living with diabetes. Before March 17, 2000 I was just as ignorant.  

Not knowing is okay. There are many things that I don’t know about but I am always willing to learn.  I wish that more of you were willing to learn the facts about diabetes as well.

I wish you had more empathy and less judgment

If you open your mind and learn, I hope that you will also begin to have more empathy and feel less inclined to point blame at the victims.  For some reason, a lot of the general public thinks that it is okay to blame people with diabetes for their condition.  It doesn’t matter if they are 2 or 92, many people feel that if someone has diabetes that they must have done something to make it happen.

In making that assumption you are hurting people like me, my child and many others who did nothing more than be born with genes that led their bodies to attack themselves.

You would think that after all of these years that I would have a tough skin–I do.  I am used to well-meaning people passing judgments on food that my child can or cannot eat because he has type 1 diabetes.  I am used to people telling me that they understand my worries because their grandmother developed diabetes last year at age 75.  I am used to people saying that my child must have it really bad because he uses an insulin pump.

I have learned to educate people on the reality of life with diabetes when I can

I have learned to calmly tell those kind health care providers who ask if my son will outgrow type 1 diabetes that, no, he won’t.  He can’t grow himself a new lung and he won’t grow a functioning pancreas any time soon but thanks for asking!  

I have learned to smile when I watch a TV show that suggests that they can track a missing person through the GPS on their insulin pump. These are silly things that just get filed under “Things you deal with when you live with diabetes”.

No, I didn’t cause my son to have type 1 diabetes

John. Jane. I know that I did not cause my son’s diabetes. He never had chocolate bars or was force-fed jube jubes as a tot.  He had breast milk and very few processed foods but that was not enough to protect him from developing diabetes.  His body still failed him.  It attacked him leaving him terribly sick and almost killing him.

My genes may have played a role in this attack.  I have no family history of Type 1 diabetes and very little of Type 2 but I will accept that somewhere in my genetic makeup, there may have been some code that when passed onto his tiny body, created the havoc that led to his diagnosis.

My ignorance of the reality of illnesses like diabetes and my faith in the medical community delayed my son getting treatment much later than he should have. I will accept that.  I believed the ER doctor who examined him and told me that he just had the flu.  That misdiagnosis almost cost my son his life but I will take the blame for listening to the doctor, even for a short while.

Download the signs of diabetes here.

I still feel some guilt however

As you can see, I don’t need you to add to my guilt with nonsense. There are enough real contributors to keep me feeling horrible but they don’t. The reality of living with diabetes means that keeping my son alive and healthy for the past 15 years has been a greater priority.  It has been more important to learn about his disease, get him the best medical treatment, and teach him how to take care of himself than wallow in guilt and blame.

Please be more understanding when talking about diabetes

So John and Jane, what I am asking from you is for a bit more understanding.  You don’t have to know what my life with diabetes is really like. You don’t have to know what my son deals with every minute of every day.  If you would like to learn more, please ask me and I will give you as much information as you want.  What you can do for me, however, is to think before you speak.  You can think before you laugh at jokes about people getting diabetes.  You can think before you spread false information.

Please do not use scare tactics and tell your children that if they have one more candy out of the dish that they will get diabetes.  This is no more likely than your eight-year-old dropping dead of a heart attack because they had one more french fry.  

You are right to teach your child the importance of healthy eating.  You are right to tell them how important eating balanced meals and staying active are but don’t make them think that the child in their classroom is responsible for her diabetes because she ate too much candy.  It isn’t fair to your child who may not want to be friends with someone who has such poor willpower. Further, it is not fair to that student who has enough going on in her body dealing with the reality of living with diabetes and could really use the support of friends.

Please Mr. and Mrs. Public, do not tell your friends about people getting diabetes because they are fat, lazy or because their parents didn’t care enough to stop them from eating junk. You may be sitting in a room with a parent whose child has diabetes.  That parent has struggled to make sure that their son or daughter has led a “normal” life while dealing with 3am low blood glucose levels that could kill their child.  That parent may have spent the past week worried about how their son would handle the pressures of graduation ceremonies and after parties while managing their diabetes care on their own.

These are just some of the realities of living with diabetes, John and Jane Public.

I know that you cannot begin to understand what my life has been like for the past 15 years.  I know that you have no idea as to what my son deals with each day.  I don’t know what its like to deal with a child with asthma or Crohn’s disease but I would never blame the child or the parents for the disease.  I would listen and learn.  I would empathize and offer the little support that I could.

I don’t expect you to learn about diabetes.  I am not asking you to.  I will ignore most of your ignorant comments but if you let me, I will try to educate you a bit as well.  I know too much about diabetes.  I have spent the last 15 years immersed in its world.

Don’t feel bad for me. I have met some amazing people and I have learned a lot.  My son doesn’t need your pity either. He is quite happy just leading his life but when you see his pump or watch him lance his finger remember…

  • Yes it hurts but it keeps him alive.
  • Yes, you could do it if you had to and hopefully you will never have to.
  • Yes, you should stay away from that junk food and exercise more.  It may or may not stop you from developing diabetes but either way, you will feel better.
  • Yes, he does have the bad kind of diabetes because there is no good kind.
  • Yes, its okay to be thankful that you don’t have to experience any of this….I really wish my family didn’t have to either but we do so please, think before you speak, and maybe, just maybe, take the time to learn about this disease that is impacting more and more families every day.

Sincerely;

A  tired mother of a young man with Type 1 diabetes.

Loving created by my dear friend Cheryl D

Loving created by my dear friend Cheryl D

Fourteen years of living with type 1 diabetes

child with diabetes

14 years ago today my world turned upside down. It was not a fork in the road. It was not a minor blip on the radar of life. A bomb exploded and it forever changed the landscape of my life. It was the day diabetes entered our life.

14 years ago this morning, I was looking at a sick little boy in my arms and was waiting to be able to take him in to see our doctor.  I was ignorant of what was to come.

And just like that, he is a young man who happens to have diabetes

14 years later, my son is a young man making his own decisions and stretching his wings…who just happens to live with Type 1 diabetes.  I am stumbling to come to terms with my new role of no longer being a hands-on mom and often find myself looking back to see what I have done in hopes of figuring out where I will go next.

There have been a lot of changes in diabetes technology

insulin pumps after 14 years of type 1 diabetes

14 years of type 1 diabetes have brought many changes.  Insulin pumps are more readily available and continuous glucose monitors are no longer things found in hospitals that are blinded for 7 days.  They are real tools that families and individuals are using in real-time to help fine tune their care.

14 years later and still living strong with diabetes

14 years ago, type 1 diabetes threatened to take the life of my son.  Today he is strong, vibrant and learning how to handle his disease.  Diabetes does not control him. It’s just his “thing” to live with.

We have not always seen smooth sailing. We have had our moments.  He has driven me crazy at times–failing to test or change infusion sets. He still can drive me nuts. I have yelled at him because of my own failings and frustrations.  We are not perfect but we are living. As the commercial says, we are living with diabetes. It stops him from little.

Type 1 diabetes has brought us life long friends

friendships after 14 years of type 1diabetes

Type 1 diabetes has brought me the most incredible friendships.  I have friends throughout the world who have reached out at various times in my life to help me up or shove me forward. I hope I have done the same for them.

14 years seems like such a long time and yet I can see us back in that ICU just like it was yesterday.  Some things you never forget…my son has but I haven’t.

Thank you

On days like today,  I look back and say thank you! Thank you to the doctors and specialists that kept him alive and have taught us through the years.  Thank you to the Higher Power that has been with us through it all. Thank you to the friends and family who have joined us on this journey. Thank you for 14 years of good health and improved technology!

Diabetes sucks but life after diabetes…well it’s still life and that is pretty amazing!

Balancing Diabetes…A Book Review

balancing diabetes

A number of months ago, I was honored when the folks at Spry Publishing contacted me and asked if I would be interested in reviewing an advanced copy of Kerri Sparling’s new book, Balancing Diabetes. I have enjoyed Kerri’s blog but I honestly wondered about a book that suggested that you could find some balance in a life with diabetes.  What pat formula would she suggest?

Any fears or concerns that I had were quickly pushed aside as I began to devour this book. As with any book that I read and am going to review, I bookmark passages and pages with little notes of why this sentence or paragraph moved me.  In looking back at Kerri’s book, I literally have over 50 different sections marked off for mention! This has to be a great book…and it is.

Balancing Diabetes also gives you a look at being a parent of a child with diabetes.

As a mother of a child with diabetes, I was also worried that I would be reading this book from the outside. Kerri is a person with diabetes and this book would be all about her right? Wrong.

By page 9 Kerri’s mother shares her feelings and I could hear myself in her words “…I didn’t know what we were getting into. I just thought, Okay let’s go deal with this, whatever this is.”  Kerri’s mom goes on to say that she handled what she was given but did not want any more.  She would learn in stages because to get everything at once would be overwhelming. I felt the same way when my son was diagnosed.  I was on overload and autopilot for months. Slowly I would add knowledge and information when I could handle it…this was how we, as parents, found balance with diabetes.

This book brought out many emotions.  Reading about the burden of being shown and repeatedly told about your own mortality at such a young age made me wonder how my son feels? Is he still an immortal teen or does he have Kerri’s “heightened awareness of how vulnerable” her health was? Either way, does he also know, that I share Kerri’s mother’s feelings? When Kerri told her that she didn’t care if she was high and her mother responded, “For now, I’ll care enough for both of us.”  Yes, I cried reading this.

There is a balance of humor and serious conversations.

But like the title, this book has balance.  While there are many very serious conversations, humor creates a fabulous balance and brings a different kind of tears…the ones you get from laughing! Kerri’s wonderful sense of humor shines through in this book. 

The topic of sex is never an easy one, but Kerri takes you past the embarrassment and makes you laugh at her candor.  She shares the story of her first serious low with her husband. It took place after they had made love and her husband lays claim to responsibility for it happening!

Besides the amazing humor and the walk through Kerri’s life, she brings in the experiences of many other people who live with diabetes to provide some fabulous tips for living a full life with diabetes.  They take us through diagnosis, the trials of teens, life as a young adult, dating, marriage and even pregnancy.  

Kerri talks about the sense of helplessness that diabetes can create at times–for the person with diabetes, their partner, and even for the parents.  Sean Oser provides insight on dealing with blood sugar readings, “There are no good or bad blood sugars; every result is just a number, and it tells us what to do next.” This is a motto that I have tried to instill in my own son for years.

Balancing Diabetes looks at pump starts, travel and advocacy.  Each topic is looked at both from Kerri’s perspective as well as that of  many other people in the diabetes community.

Balancing Diabetes portrays real life.

The most poignant section in the book for me, was when I saw a person state that they do NOT believe that you can find a balance when living with diabetes.  What? But the title of the book says that you will.  How could this happen? How could someone state that balance cannot be achieved? Well, that is the beauty of this book! It does not show one size fits all, pat answers. This book shows you real life. It shows real pain and real accomplishments. It emphasizes that diabetes really is a “your diabetes may vary” kind of disease.  How wonderful!

This book is a fabulous balance of perspectives and stories.  It does not tell you one way to “do it right and achieve balance”, it shows you a variety of approaches to a variety of topics and what works for different people. 

The best thing is that it also tells you that you never fail. If you have been really bad about taking responsibility for your diabetes care, cut yourself some slack and make a change now.  It’s not too late. If you have been diagnosed with diabetes-related complications, don’t beat yourself up. It’s not your fault.  Brush yourself off and move forward. You have got this handled. You are amazing!

Balancing Diabetes is a wonderfully written book filled with a balance of real life events that show that we are not alone–whether we live with diabetes, are parents of a child with diabetes, or just love a person with diabetes. Now hurry up and order your copy because I noticed that Amazon Canada was almost out already!

Looking for other great diabetes reads? Check out our diabetes books section!

Psychic Connection?

The other night was night two of tossing and turning which in itself is not entirely unusual. This night was different though.  I was completely tired and ready to drop.

I had read a few pages of my book, done some relaxation exercises but sleep would not come.  After awhile anxiety began to creep in. I tossed and turned some more.  My mind began to take off on its own. There was no way to reel it back in.

I thought of my oldest son living up in Alberta.  Had he been injured at work? I would have heard if he had. I tried to shut my mind down again. I tossed and turned some more.  I thought of my youngest son. Was he testing at night? Was he in trouble? Had something happened? I again worked to calm myself down. Both boys, or someone around them, would have contacted me if there was a problem.  I was being foolish.  I was overtired. I had too much on the go. I had too much time on my hands.  There were a million reasons for me to be tossing and turning. Driving myself insane was in no way helping the situation. By 2am I finally fell asleep.

When I got up the next morning, I wondered if this had just been a reaction to so many years of interrupted sleep.  Was my body going through some sort of withdrawal? It has not slept through the night for any extended period in 20 years.  There was bound to be some issues at some point. I decided that I would try herbal tea with my book the next night.  All would be fine. My kids were still alive. No friends or family had been injured during the night. Obviously my anxiety was unwarranted. It was probably just my body being strange….and then I talked to my youngest son.

After a bit of chatter, I asked him how his readings were.  “Good except for last night. I was up all night because of a bad site.  I got it fixed though and was perfect during the day.” BINGO! There was the source of my anxiety!  He was in trouble the night before.  Well not trouble, but you know what I mean.

I have spent almost 14 years somehow waking to most diabetes related events. I would wake at unexplained times when he was low or high.  Something would bring me out of a deep sleep and make me test him.  We have no CGM.  I just somehow often “knew“.  Perhaps this knowing did not know distance?  I am not sure. Some people would say that I was crazy and this was just a coincidence.  It could be. I am not sure but I do know that I slept a little easier the next night.  Any tossing and turning  I experienced that night didn’t have a higher level of anxiety attached.  As long as my son is also waking and dealing with things…well I will probably always worry and be concerned but hopefully I will find a level of calm. If I don’t, I will text! psychic 

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

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