Tag Archives: type 1 diabetes

Animas, We are Heartbroken

Animas insulin pumpers heartbrokenJohnson and Johnson announced on September 5th of 2017  that they were closing the doors on their insulin pump division in Canada and the US.  Animas Insulin Pumps would be no more. Animas insulin pumpers in North America were heartbroken.

While some saw it coming in the corporate rumour mill, others were blindsided.

Animas had done something that many companies in many industries are striving to do…they had  created a feeling that you were family.  Whether you were an Animas insulin pumper or you used another brand, you had probably attended an Animas event and were treated royally.

The employees with Animas all seemed to genuinely care about you.  They checked in on you and took the time to know your family.  I had the pleasure to work closely with many members of the Animas family over the years.  They will be huge assets for the next company that employs them. I am sure that many of them are just as saddened as we are.

This is not the first time that an insulin pump company has closed its doors.  We have been here before…twice.

Cozmo (personally a pump like no other) closed its doors in 2009.  We still have two in my son’s closet.  I have friends who still wear this as their pump of choice.  It is doable even 8 years later.

Most recently, Asante, a pump revered by many who tried it,  was also forced to step away from the insulin pump market.  Their users were devastated.  They were heartbroken and felt lost–just like Animas insulin pumpers are feeling today.

How did they go forward?

One step at a time.  The great thing about insulin pumps is that, while some have quirks, many are pretty sturdy and last.  If you have more than one pump in your house–usually because one was out of warranty and you  purchased a new one right away “just in case”, relax.  If for some reason, you current pump stops functioning, go back on your old one while you decide which pump to try next! Just make sure to write down those settings and keep them in a safe place.

What do I do now?

You don’t have  to stockpile supplies   You don’t have to run out and buy a new insulin pump tomorrow.  The Animas press release stated that warranties will continue to be honoured until September 2019. Cartridges will be be available until that date as well.

Statements from both Animas and Medtronic note that supplies will still be able to be ordered in the same way as before. Nothing changes, except when your Animas pump stops working, you will not be able to purchase a new one.

Thank you…

So while we take a breath and rethink our next steps…our next pump…our next option, I want to take a moment and say thank you.  Thank you to the men and women who worked so hard to make Animas a different company.  I truly appreciated getting to know so many of you.  You brought us a new experience in caring.  I hope that we meet again soon, with a new company perhaps bringing new options in diabetes care.

Options are the most important thing.  Make sure to always know your options and always choose the option that works best for you and your lifestyle.

 

The Disability Tax Credit for Adults…What you need to know

Disability Tax Credit tipsThe Disability Tax Credit is a non-refundable tax credit available to Canadians who meet a very strict criteria set out by the Canadian Revenue Agency.  One of the criteria is that you must take over 14 hours per week to perform life-sustaining therapy.  This is the section that many people living with diabetes qualify under.  Before you apply there are a few things that you need to know.

Having diabetes doesn’t mean that you qualify.

Not everyone with diabetes will qualify for the Disability Tax Credit (DTC).  The criteria states that children with Type 1 diabetes qualify . Adults (anyone over 18 years of age) however, must show that they spend over 14 hours per week on their care.

Why do children get the DTC so easily?

The reason that children qualify  for the Disability Tax Credit is because CRA feels that the time that they spend on their care AND the time that their parents spend on their care, together is equal to more than 14 hours per week.  Adults do not require the help of others for the most part. Therefore must prove that they, themselves spend over 14 hours per week on therapy to keeping themselves alive.

Do I really spend 14 hours per week keeping myself alive?

That is a question that only you can answer.  I will say that if you are intensively managing your diabetes, then more than likely, you do take an inordinate amount of time out of your day to manage your diabetes care.

A person who is not reliant on an external source of insulin to live does not have to be concerned about blood glucose readings, anticipated activity levels, impending illness,  or fat contents of meals when planning their day to day activities.  The average person does not have to draw up a syringe, put in an infusion set or calibrate a continuous glucose monitoring sensor.  A person without diabetes does not have to keep track of their insulin requirements, blood glucose levels or activity levels in a journal.

These tasks, while commonplace for a person with diabetes, are all tasks that are recognized by CRA and count towards the 14 hour total required to be certified for the Disability Tax Credit as requiring life sustaining therapy.

I hear that adults no longer qualify so why should I try?

Some adults are experiencing a harder time getting the tax credit.  There can be many reasons for your application being denied.  You may be including tasks that are not recognized by CRA as being an allowable part of therapy.  Things like grocery shopping, doctors appointments and trips to the pharmacy are not allowed to be included in your total.

Another reason that adults are being turned down is because they are not providing details on their own specific care.  Often people are turning to internet groups that have sample forms filled out. They then simply copy and paste the details that they have found. You should be  using that information as a guide and filling out the application in your own words with your own specific care details.  CRA is noticing a pattern of applications and is now beginning to question their authenticity.

What does that mean?

It means that you need to make your application your own.  Spend one week detailing what you do each day.  It will take you a lot of time to stop and write everything down.  Time each task.  Note how often you perform it.

Take this week’s worth of information and then compare it to your online resources.  Eliminate the tasks that CRA won’t approve.  Add in the tasks that you did but forgot to add in your personal list.  Now total your time spent.  Most likely, you will find that you spend more than 14 hours per week on your care.  This data can also be shared with your doctor at your appointment. It will help he/she understand who much time you do put into your care.  This will further be of use if he/she if they receive a follow up letter from CRA asking for more details on your care.

Adults with insulin dependent diabetes who test regularly (6+ times per week), who inject insulin multiple times per day through injections or an insulin pump, and make their own adjustments to their insulin regimen should apply for the Disability Tax Credit.  If you are turned down, you have the right to ask for your application to be approved by another CRA staff member. Sometimes the second review still does not turn out in your favour but don’t despair. At that point,  you have the right to see all correspondence used in your file and begin a formal appeal process.

If you are unsure of how to fill in your application or you just want someone to review your totals, I can assist you. Email me or check out the Disability Tax Credit page for more details on receiving assistance.

 

Tips for Managing Diabetes in the Summer

diabetes family summer partyIts summer!! I mean it really is finally summer! Some areas have been enjoying great weather for a bit but where I live–well, I kind of wondered if summer was ever going to show up.   Now that it is really here, let’s talk about a few tips for managing diabetes in the summer months.

Keep your insulin and test strips cool.

Summer heat can literally ruin blood glucose test strips and insulin.  If you are on injections, make sure to keep your insulin stored in a cool place. If you are pumping, again, make sure that your pump doesn’t get overheated.  You may even want to consider changing out your cartridges more often to ensure that your insulin is fresh and hasn’t been compromised by the heat.

Test strips also react to extreme temperatures.  Again also make sure that they are stored in a cool place.  If you are traveling to the beach or theme parks, you may want to invest in a FRIO Insulin Cooling Pump Wallet.  They are convenient little cooling packs that will help to keep things chilled.

If you don’t have access to Frio packs, another great suggestion is to use frozen juice packs.  You can keep your supplies cool and are prepared for lows!

Mastistol and Antiperspirant are pumpers’ new best friends.

Summer often means swimming and swimming can mean chlorine. Chlorine can bring extra headaches for people with diabetes using an insulin pump in the summer. Personally,  the only way for us  to keep sites on in chlorine was by making sure that a product  like Fernandale Mastisol Liquid Adhesive was used on the skin prior to set insertion.

For people using an insulin pump and/or a CGM, you may also want to look at using an antiperspirant on the site.  Apply a light coat of antiperspirant (not deodorant) to the insertion site area.  This will help to keep sites in place when your body begins to sweat!

Have snacks everywhere.

Summer heat can bring its own challenges for managing diabetes. It tends to mean more exertion and rapidly dropping blood glucose levels.  Make sure to carry extra snack foods with you wherever you go.  One parent suggests that you stock up on Freezies.  They are perfect treats for lows and also help ward off dehydration.  Other families have suggested fruit and frozen grapes as must have snacks for on the go.

Drink lots of water.

Dehydration is a real problem in the heat.  It is especially important for people living with diabetes to stay hydrated because dehydration will cause blood glucose levels to spike.

Test often.

Heat, exhaustion and the fun of the sun can really mess with blood glucose levels so make sure that you test often to avoid any serious diabetes related emergencies.

Bring extras!

As I have said, infusion sets can fall out.  Blood sugar levels can go crazy.  It is vital that you carry extras of everything–extra snacks, extra water, extra test strips, extra insulin and extra infusion sets just in case.

Wear sunscreen.

I know, everyone is supposed to wear sunscreen so really is this a diabetes issue? Well no…and yes! It turns out that sunburns have been known to really mess with blood glucose levels.  The moral of the story? Stay hydrated and wear sunscreen to help keep blood glucose levels in check.

Have fun!

Finally, in Canada especially, we just don’t seem to see summer for long enough so plan ahead and enjoy all that this summer has to offer you and your family!

*please note that affiliate links have been used in this post.  While these links do not direct to the only places to purchase the highlight products, purchasing from the links does support the work of Diabetes Advocacy

Diabetes is not a joke. Diabetes kills.

candleDiabetes is not a joke. Diabetes is not about weight or junk food.  This disease requires those living with it to walk a fine line…too much or too little insulin can have catastrophic ramifications. The fear is real and justified.  Diabetes kills. 

The article below was originally published on May 11, 2016.  It was exceptionally hard to write.  As a parent of a child with diabetes, we know that diabetes is deadly but we hope it will never kill one of our own.  When it does….well your world is shaken to the core and is never the same again. 

I think of this family daily.  I can only begin to imagine their pain and the pain of others who have also lost their loved ones to this disease.  We will never forget. We will continue to work towards a cure. 

In the diabetes online community, the appearance of a blue candle suggests that someone has lost their life to diabetes.  Its a time of sorrow and a time during which we hug our loved ones a little closer. It is also a  time to test a little more often before we allow the memory to fade and we move on.

Last week I received a message that made my heart stop.

I headed over to a friend’s Facebook page to verify what I had read.

blue-candleThere was  the blue candle.

My breathing stopped.

I read her post.

The tears began to flow.

Through the tears I sent a message to my friend.  She confirmed my worst fears with her words “I just want him back.”

“Oh, I wish I could bring him back for you!”

That’s what I replied through the tears.  I was numb.  The blue candle was no longer for a stranger who could have been my child.  This candle was for a child that I had watched grow through our online communications. This was happening to a friend who had been there for me through highs and lows of  16 years with diabetes.  I wished I could bring her son back to her.  The pain was too much for me and  I couldn’t begin to imagine how she was feeling. It hurt too much to try.

No mother should bury their child. We shouldn’t have to mourn for those who have yet to have fully enjoyed their lives. There is something fundamentally wrong with that. It makes our hearts ache.

When we hear of a child lost, we hurt but we push it away. It happens to other people.  It is horrible but it happens to other people.  But what about when it doesn’t? What about when it hits your family?

Last week it hit my family and the pain is still fresh.

15 +years ago, I became connected to the internet.  I reached out to find “parents of children with diabetes”.  Instead I found an information email list, or so I thought but what I really found was a family.

I found people, some that I would meet, some that I would talk to on the phone, and some that I would never know beyond the keystrokes of a keyboard. All of them would become family.  They would be by my side through the good times and the bad.  They would understand diabetes –its peaks and valleys but they would also understand me.  This incredible online community would be there for me at all hours from around the globe.  They were Friends for Life–they were family.

Over the years, some of those connections have been neglected.  Our children have grown and some of  our children have become parents themselves.  We have watched each other’s lives on Facebook and occasionally we wish each other well.

Other connections remain strong. We reach out regularly.  We have remained in contact and fondly look back on where we have been.

No matter whether we are close or drifted, when tragedy strikes we are all one big family again. One family united by pain–sobbing with each other.  A family holding each other in virtual hugs through real tears.

Tragedy isn’t supposed to hit us. Not a direct hit  like this one.  Diabetes in to supposed to take a child that we “knew” and watched grow but it has.  The pain is unbearable.

I know that the pain will fade for some of us.  It will dull a little for my friend but that missing piece will never be replaced.  I am lucky.  In 16 years, my son has stayed quite healthy.  In all of this time, I have only known of one person–whom I had met, spoken with, and been friends with, who had died because of diabetes but now there are two. Those are two too many.

I don’t want there to be any more.  There must be a cure.  People with diabetes deserve better access to treatments.  We need more awareness. We need more…

Those of us in the diabetes community  will continue to work harder. Some people will bike more while others will walk more. We will all advocate louder.

Our hope will remain.

We came together because of diabetes but we have stayed together because of  incredible friendships that knows no borders.  I pray that one day we will celebrate a life without diabetes.  Until then, hug your loved one a little closer today.  Send prayers and strength to the families who have lost someone during our fight. I am grateful to each of you who have become such an important part of my life.

What Parents of Children with Diabetes Wish You knew…

d parentsHave you read the blog post “What Everyone with Diabetes wishes you knew“? Go and read it if you haven’t. Bring tissues.  After I wiped away the tears, I began to think about “what parents of children with diabetes wish you knew.”  Some of us don’t have diabetes ourselves but we still have very strong feelings about the issue.  As parents of people with diabetes, we have things that we wish  our children knew.  There are also things that we wish that the general public knew.

Parents of children with diabetes wish that the our children with diabetes knew that….

We would take this disease from them in a heartbeat…a heartbeat.

With every tear that they shed,  we have privately cried  a hundred more… We didn’t want you to see how much it hurts us to hurt you.  We told you that we do this to keep you healthy and alive (and we do) but it kills us too.

No matter how old you are, we still want to “make it better”. Seriously.  Still.

We know that you can handle it.  We just wish that you didn’t have to…As parents of children with diabetes, when we were completely responsible for your care, we got tired and wanted a break. We understand that you, as the person with diabetes must feel the same way at times. We wish we could carry the burden for you.

Even when we don’t ask you how your readings are, we are still wondering if they are okay…We know that you are more than a number.  As parents of children with diabetes, we understand that blood glucose levels are only part of the story but we want you to be okay.  We want to know that the readings are okay as well.

We have watched you sleep and cried at all of the holes that we have put into your body just to keep you alive.

Every night that we sat awake waiting for your blood glucose to rise or fall, we did from love and a need to keep you safe.

When we nag at your for not testing, injecting or rotating sites it’s because we want you to have a long and healthy life.  It’s not that we love the sound of our own voices. It’s not that we think you don’t have a clue. As parents, we know  that life happens and people forget. We just want to help.

If you need us to, we will still help you with any care or night testing.  Ask.  We might be out of practice but we are quick studies. We will help you any way and any time that we can. It’s just what parents do.

Even if you aren’t my child and you live with diabetes, I wish I could take it from you.  Honestly,  I wish I could help you carry that burden for a week and let you breathe.  I have told you this before and I mean it. I don’t care how old you are.  You are someone’s child with diabetes.  You carry the same burden as my own child.  It still kills me.

I wish you didn’t have to carry so much “gear” with you when you go out.  I wish you knew the luxury of just grabbing your wallet and keys and heading out the door without concern for insulin, pump, glucometer and glucose tablets.

We wish for a cure too. Until it arrives, we will work with you to have the best care, the best knowledge and the best tools that we can afford.

As parents of people with diabetes, we wish that the general public really understood that…

Type 1  is not the same as type 2 diabetes.  Each disease has its own challenges and issues.

We did not cause our children to develop diabetes.  Seriously, we carry enough guilt about not protecting our children from an invisible disease.  Your added blame is not required.

It is okay for our children to have treats now and again, the same as your children do. No child–or adult should live on junk food but a cupcake now and again will just brighten someone’s day…or raise a falling blood glucose level.

Insulin is not a cure. It just keeps my son alive…and can kill him. It is a carefully managed tool that he use must use at all times.

An insulin pump is not a cure either.  A pump is an expensive tool that not everyone can afford.  Even for those lucky enough to be able to use one, there is still much work to be done to be safe and healthy.

Diabetes is expensive. Let me repeat this….diabetes is EXPENSIVE. There are many great advances in diabetes care but they are only available to those with excellent insurance or deep pockets.  The cost of diabetes supplies can range from the equivalent of a car payment or  mortgage payment each month. Again, that is just for a person with diabetes to stay alive.

I look tired because I don’t sleep at night.  After years of worrying about my son’s blood glucose levels and testing him numerous times per night–well I still wake up. I still worry about what his readings are. I still don’t sleep properly

Worrying isn’t about being an overprotective helicopter parent or because I have nothing better to do with my time.  I worry because diabetes is deadly.  Errors in insulin, errors in tools or simply changes in activity levels can have lethal consequences for people with diabetes.  This isn’t just talk. This is real.  I have lost friends to this disease.  Parents of children with diabetes  have seen their children die because of diabetes. Diabetes kills. It is a scary disease.

As a parent of a child with diabetes, I hope both my child and the general public know that I will continue to work hard every day to improve the lives of people with diabetes. I will offer a helping hand, a strong shoulder or the voice of experience where necessary. I will continue to dream of a day when we can say that we are parents of children cured of diabetes.

 

 

Diabetes changes your vocabulary

It’s funny how your vocabulary changes when diabetes enters your world.  I saw nothing wrong with sternly telling my 5-year-old son who was having a tantrum in public.. “You had better be high mister!” In hindsight, you do have to wonder how many adults were wondering why I was okay with my child being stoned.

Before diabetes, if someone said that they were low, I would have assumed that they were having a bad day.  I would have offered them a shoulder to lean on…today I am running for glucose!

Twenty years ago, if you had told me to grab a site, I would have thought you meant a campsite and would be questioning why I, of all people, would seriously want a camping site? I prefer camping in a 4 star hotel to sleeping on the ground with bugs and other creatures.

Today when I ask my son to tell me his BS, I don’t want to hear the lies that he has to tell. Gone are the days when BS meant bulls*!@.  Now it reflects important blood glucose information.

A juice box is no longer just something to have on hand when the grandchildren pop over for a visit.  Those little guys are vital, life-saving bottles of sugar to be used when my son comes in from work and says “I’m low”.  He doesn’t want a hug, he just wants that juice!

A Pump is not just for breast milk
A Pump is not just for breast milk

I recently reached out to the diabetes community  and asked what words had new meaning for them when diabetes came into their lives.  The answers were pretty funny! Check these out…

  • A D-bag is no longer a douche bag but rather that super important kit that contains all things diabetes related.
  • Checking your numbers no longer refers to wondering if you have won the lottery.  When diabetes moves in, it is hoping that you win that diabetes lottery and your readings are perfect.
  • As a parent, this was one of the hardest ones for me  to handle…”If you are not hungry then leave your salad and make sure that you finish your dessert!”
  • The question, “How is your 6 year old’s reading?” now sends one parent to automatically check their child’s CGM rather than reply as to what sort of books they are currently able to read.
  • “Make sure you wash all of the blood off of your hands.” has nothing to do with clean up after  a serious accident, applying trauma care or cleaning up a murder scene.
  • A pump isn’t just for breast milk any more!
  • “What’s your number” is not a pick up line.
  • A “Sugar Daddy” does not refer to a man who is supporting a woman in a lavish lifestyle but rather the father of a child with diabetes.

I never realized how much my vocabulary has changed since diabetes came into our lives.  Quite a few of these made me laugh as I realized how odd they must sound to the outside world!

What sort sayings or words have completely changed their meaning for you since diabetes barged into your life?

 

Diabetes Diagnosis day…It slipped my mind

Celebrating 17 years of health and wellness
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 be St. Patrick’s Day–an excuse to go out with his friends and have a beer.

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 shovelling 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.

 

The Healthcare Experience…Day 4 of DBlog Week

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

health-insurance
Today’s prompt is a tough one and a very interesting one.  I no longer have a lot of  dealings with the health care system regarding my son but over 16 years we have definitely had highs and lows.

Our initial foray into the world of diabetes, involved a horrific healthcare experience–my son was misdiagnosed, sent home and almost died.  Thankfully that was probably the worst of it (I know it couldn’t get much worse could it?).  The upside was when he was finally diagnosed, we were given a doctor who truly helped to set us on a course for success.

My son’s doctor believed in the most advanced treatments.  He encouraged me to learn and to try new things.  The rest of our diabetes care team was the same.  They taught us carb counting when others were still using exchanges.  Equally important, as I began to learn and explore the world of diabetes, they were eager to learn from me.  That was both empowering and endearing.  They cared–we were a team.

Not everyone we encountered “got it” however and it has been important for me to try to empower my son in his own care.  Soon after my son moved away, he had some sort of an attack (for lack of a better word).  The doctors worried that it was his appendix but they never did establish what had happened.  He was rushed to the hospital and the health care team attempted to manage his diabetes.  My son told them point blank “You deal with what brought me here. I will handle my diabetes.”  I was very proud.  My son is quiet.  It was very important for him to be able to do this for himself.

He is now a young adult.  He now sees a new team of doctors.  He faces new challenges…and as a mom on the sidelines it is driving me crazy.

He doesn’t feel that the new team has any idea about his diabetes care.  From my limited knowledge, I believe it is made up of people used to dealing with older adults with Type 2 not young people who have lived with Type 1 all of their lives.  Because of the area that he lives in, he is unable to “fire” them and find a new team.  I have reminded him to politely let them know that he does know what he is doing.  If he is showing them readings like I saw when he visited me, they prove that he does have this down pat.

For the moment, he is biding his time until he can move to a new team.  I am hoping to see him move back with me this fall to attend trade school. I have a friend who is now a CDE for adults. I am hoping to be able to get him in with her. I think it will be a huge help to him on all levels–she is a nurse, she lives with diabetes, and she has had diabetes since she was his age. A win-win-win.

In the meantime, the issue does continue to frustrate me.  Youth with diabetes have enough challenges.  They face many issues with transitions and lifestyle changes. It would be nice if more of their diabetes teams could be supportive and work with them.  There has to be a mutual respect of knowledge.

I continue to remind my son that the health care providers have something to offer and he must share with them that he is knowledgeable as well.  He finds it a challenge.  He feels his knowledge is far greater than their’s and sadly, it may well be true.  I then remind him that he has been very lucky. Over the years he has sat and spoke with some of the greatest diabetes minds in North America.  This is not a privilege that everyone has had.

Is there an answer? Balance.  I truly wish that there was more balance.  Patients are learning more now through their own research and through the experiences of others.  Doctors and educators are also learning but there must be a partnership.  Neither should be in a power position.  Both should be working toward the common goal of best physical and mental health for the individual.

What’s in a Word? Day 3 of Diabetes Blog Week

words-robin-sharma-quote

“The pen is mightier than the sword.”

“The tongue can pierce a heart. ”

“Words can inspire and words can destroy. Choose yours well.”

We have all heard the sayings.  We have also all felt the sting of words.  Words are very powerful.  They have a huge impact on our lives.

Today’s prompt for Day three of Diabetes Blog week, asks us to discuss the power of words.  How do we feel about the word “diabetic” for example?

I always refer to my son has  a person with diabetes.  “Diabetic” is not a word I have ever used around him or anyone that I know living with the disease.  Despite that fact, he will occasionally call himself a diabetic.  Does this mean that he seems himself as the disease? No but this condition has been with him for as long as he can remember.  It is as much a  part of him as his pump, meter and lancing device are.  They keep him alive.  He has a bum pancreas.  He understands that his daily routine is different from others. He doesn’t see it as a major obstacle.  Diabetes, diabetic, person with diabetes….they all just seem to be terms to him–terms that really don’t change much.

Some people are offended by the use of the word “diabetes”.  It is a word that is thrown around by the media and accompanied with a great deal of blame.  Diabetes happens to fat people who don’t care about their health. Diabetes is what happens when you feed your child a diet of chocolate bars from birth to age 12 non-stop.

Can you see the insanity? To me, the solution is not a name change.  The name has been changed–we once had juvenile and late-onset diabetes, and now we have Type 1 and Type 2 diabetes.  Another name change personally will change nothing.  The attitude and awareness must change.

No one should be blamed for their illness.  Education must continue.  We should unite in that effort not add to the shaming.  Cartoons that suggest that if Jimmy had twelve cupcakes and ate ten that he would have diabetes are just wrong.  I don’t care that it doesn’t say he will have Type 2 diabetes…it shouldn’t say diabetes period. It is not funny. It is simply cruel and that is wrong.

There are words used in diabetes care that  matter deeply to me.  The words “test your blood sugar” for example.  Those are words  that I have worked to be exceptionally careful with.

“Test” is a word with strong connotations in our society.  It suggests a black and white outcome–pass or fail, success or failure.  Blood glucose readings are often high or low and sometimes even “in range”.  To call the task to get those readings a “test” suggests that the number will show your worth–how good of a pancreas you were.

Yesterday we discussed the mental drain of diabetes.  For me, equating a reading with passing or failing adds to that burden.  It was very important to me, especially remembering that my son has been hearing readings since he was two years old, that numbers be just that…numbers.

I tried to stress that readings were tools.  They were a reference point to move forward from.  A reading that was too high was not a fail, it meant that he needed more insulin and next time we may need to factor in something else when dosing.  A reading that was too low as again something to learn from.  Of course a reading that was perfect was reason to dance, celebrate and pat ourselves on the back for being just plain awesome.

Words are powerful.  They can make you feel strong and invincible.  They can cut you to the core and make you feel worthless.  In life, I try to choose my words carefully. I make mistakes. We all do. I am not hypersensitive to the words that others use. I take my cues from my child and continue to make sure that he is not defined by the word “diabetes” but accepting of a life with this unwanted passenger.

I wish I could bring him back for you

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In the diabetes online community, the appearance of a blue candle suggests that someone has lost their life to diabetes.  Its a time of sorrow.  Its a time to hug our loved ones a little closer. Its a time to test a little more often and then we move on.

Last week I received a message that made my heart stop.

I headed over to a friend’s Facebook page.

I saw the blue candle.

I couldn’t breathe.

I read her post.

The tears began to flow.

Through the tears I sent a message to my friend.  She confirmed my worst fears with her words “I just want him back.”

“Oh, I wish I could bring him back for you!”

That’s what I replied through the tears.  I was numb.  The blue candle was no longer for a stranger who could have been my child.  This candle was for a child that I had watched grow through our online communications. This was happening to a friend who had been there for me through highs and lows of  16 years with diabetes.  I wished I could bring her son back to her.  The pain was too much for me, I couldn’t begin to imagine how she was feeling. It hurt too much to try.

No mother should bury their child. We shouldn’t have to mourn for those who have yet to have fully enjoyed their lives. There is something fundamentally wrong with that. It makes our hearts ache.

When we hear of a child lost, we hurt but we push it away. It happens to other people.  It is horrible but it happens to other people.  But what about when it doesn’t? What about when it hits your family?

Last week it hit my family and the pain is still fresh.

15 +years ago, I became connected to the internet.  I reached out to find “parents of children with diabetes”.  I found an information email list, or so I thought.  What I really found was a family.

I found people, some that I would meet, some that I would talk to on the phone, and some that I would never know beyond the keystrokes of a keyboard. All of them would become family.  They would be by my side through the good times and the bad.  They would understand diabetes –its peaks and valleys but they would also understand me.  They would be there for me at all hours from around the globe.  They were Friends for Life–they were family.

Over the years, some of those connections have been neglected.  Our children have grown.  Some of  the children have become parents themselves.  We watched each other’s lives on Facebook and occasionally wished each other well.

Other connections remain strong. We reach out regularly.  We still see each other. We have kept in contact and fondly look back on where we have been.

No matter whether we are close or drifted when tragedy strikes, we are all one big family again. One family united by pain.  One family sobbing with each other.  One family holding each other in virtual hugs with real tears.

Tragedy isn’t supposed to hit us. Not a direct hit. Not taking a child that we “knew” and watched grow but it has.  And it hurts like no other.

I know that the pain will fade for some of us.  It will dull a little for my friend but that missing piece will never be replaced.  I am lucky.  In 16 years, my son has stayed quite healthy.  In all of this time, I have only known of one person–whom I had met, spoken with, and been friends with, who had died because of diabetes. Now there are two.

I don’t want there to be any more.  We need a cure.  We need better access to treatments.  We need more awareness. We need more…

We will continue to work harder. We will bike more. We will walk more. We will advocate louder.

Our hope will remain.

We came together because of diabetes.  We stayed together because of an incredible friendship that knows no borders.  I pray that one day we will celebrate a life without diabetes.  Until then, hug your loved one a little closer today.  Send prayers and strength to the families who have lost someone during our fight. I am grateful to each of you who have become such an important part of my life.