Why do you Blog…Diabetes Blog Week Day 1

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Can you believe it? Its Diabetes Blog Week again already! I knew it was coming and then I opened up my computer and BAM!!! Its here!! This year there will only be 5 posts so I had better get started…

Why am I here? That’s simple and complex.  For me, blogging began as therapy.  It has been a way for me to share my life, my experiences, my highs, and my lows (literally).  It has been a way for me to share my opinions and my thoughts.

The funny thing is that as I began sharing, people became interested.  Parents began to message me and tell me that they they were going through the same thing. They told me that my ramblings made them feel less alone.

Because of this, over the years my why has changed a little.  I no longer write just for me.   I now also write to show others that they aren’t alone in their trials.  I hope that I can share the serious nature of the disease mixed with the quirky and funny side of this life.   I hope to make some people think and others to simply say “YES! She gets it!”

What is the most important diabetes awareness message to you? For me there are two messages.  For the parents and people living with diabetes the message is that you can do this!I want them to know that even after their darkest days, there will one day be light.   You have options. You have knowledge.  You can use it. You can ask for help. You can turn to others and you will get through. Together, we will make it. I promise.

For those who don’t live with diabetes, the awareness message that I want them to receive is that diabetes is serious and deadly. It is not a one size fits all. It is not as simple as take an aspirin and call me in the morning. Diabetes takes a lot of work. Diabetes takes no breaks.  People who monitor their diabetes care are not obsessed, they must do these tasks to  stay alive and healthy. Not monitoring your health can cause very serious problems down the road.

Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?  It is important to me for people with diabetes to know that they can do this because my son lives with this disease.  He is now a young man finding his way.  I want him (and other people’s children) to  feel confident in speaking out about what their needs are. I want them open to learning and growing.  I want them to understand that there is a community that is there for them to help along the way.

I want  people without diabetes to understand how serious diabetes is because it almost killed my son. It has killed friends and friends’ children.  It is a deadly foe not to be taken lightly.  Too many people do not realize that and it costs unnecessary lives.  That needs to change.

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.

 

 

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

 

 

He’s Got This

Over Easter, my youngest son came to visit.  Each time he visits me I am shocked by how much he has grown. My little boy is long gone and a young man is emerging. A child with diabetes is being replaced by a young person with diabetes and I stand in awe.

This time I stood back a bit more. I tried not to fall into old habits of taking over care or nagging about testing. I gently reminded. I compared carb counts now and again when asked.  I tested him at night at his request but mostly I sat and watched.

I wondered how his care was going. He hasn’t told me an A1c in years. I worried about his rates. I worried about his health.  The more I tested, the more I watched, the more my pride grew.

He wasn’t perfect.  He still doesn’t test as much as I would like but when he did test, his results were awesome. When he ate junk, which he doesn’t do as much any more, he nailed the bolus.  When he spiked because of a low cartridge and air being delivered instead of insulin, the spike was no longer in the 20s (360+) it hovered in the low teens.

I sat back and realized that he’s got this.  All of those years of preaching, teaching and sharing have paid off.  He is taking care of himself.  He is trying to protect his body from itself and doing a good job.

In a recent conversation I reminded him that he is the expert in his care.  It is his job to ensure that he is able to demonstrate that to medical professionals that he sees.  He should listen to them and be willing to accept their help but he may also have to remind them that he has been doing this all of his life.  He has been privileged to be trained by some of the very best people in diabetes care in the world.  He has a very good handle on things and a huge support network to reach out to when he is in doubt.

He explained that he finds that very frustrating.  He doesn’t want to get into a contest of who knows more when he sees someone but he feels that after all of these years he does know his body.  He is very healthy.  He has got this…and he has!

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Governments are a mess. Private insurance is too expensive.

Governments all over are in a mess.  Private insurance is out of reach for too many.  What is left?

Last week our province handed down its latest budget.  Earlier in the month, the federal government released its budget.  No matter where you look, governments are cutting back and taking programs away.  They are not interested in expanding coverage, sharing coverage or adding new coverage to their medical expenses.

We can tell them all about the cost savings that these programs will offer but all that they see is the outlay and staffing.  They don’t see the benefits.  It can be very frustrating.

As I was logging in to write this post, I happened to open an article on the funding of the Edmonton Protocol.  For over 16 years, this therapy has been available as a last resort for people with diabetes and guess what? Governments are thinking twice about funding it as well!

What are we to do? If governments are not going to be funding treatments that have been around for 16 years, what is going to happen when the artificial pancreas comes to market? Most provinces are not funding sensor augmented pumps at this point. The majority of provinces do not provide adults with any sort of financial assistance for pumps.   What can we do?

This is where my mind as been stewing. I don’t have a lot of answers but there must be one.  We need change.  Our adults living with diabetes need reasonable access to the latest diabetes technologies to keep them healthy and productive members of society. There has to be a way to help those who just cannot afford to carry the complete financial burden.

It would have to be a  private venture.   The public system is a mess no matter where you live.  It would have to be accessible to all– a system that is reflective of what you can afford.

Private insurance companies exist but they are often too  expensive.  Many private insurance policies (either purchased by individuals or by companies) do not cover enough diabetes supplies to last a person more than a few  months.  If they do cover more, they are often so expensive that only a few can afford them.

There has to be a way for private industry, pharmaceutical entities, and those in need to somehow all have their needs met.  There has to be a way to create something new that would be sustainable and yet help those who cannot afford to help themselves.  There has to be a way to bring together all of the players to create something that doesn’t see favoritism or a monopoly but rather a way to help everyone in need through the help of everyone involved.

And this is where my brain stalls and spins.  How would you fix the problem? How would you provide better access for diabetes supplies to everyone who needs them? Where would you turn? I really am curious…

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I am dead tired…and feeling guilty

I am worn out, dragged out, dead tired…after just two nights.

I am out of practice.

I want a CGM.

I want a cure.

I feel guilty. I can’t wait to get my sleep back again.

My son came to visit for a few days.  It was the best Easter gift…having both of my boys here with my for Easter dinner! I was over the moon.

Diabetes had to tag along for the ride.  It could have stayed behind.  It played better than it has on some visits however.

I was pleasantly surprised when I got up to test my youngest son on the first night.  He was a perfect 5 (90).  I didn’t sleep. He was perfect. Exactly in range.  What was next? Would he rise? Would he go low? I didn’t sleep. I rested now and then. I checked.  He dropped a bit. Not enough to worry about. I tried to sleep. I worried.

The next night we had the opposite problem.  His cartridge had run low.  His blood glucose went up.  It didn’t go up as high as it had on previous visits.  He is even more fixated on his health and improving his control on his own.  He corrected. He had command of this.

Once again I awoke during the night. I went to his room and tested.  He was high still. He corrected.  I went back to bed.  I wondered if he would drop. I wondered if he would go higher.  I worried. I tried to sleep but I worried.

Tonight he will be in charge of his own care again.He will be the one to wake.  I will wake up just like I have for too many years.  I will wonder what his readings are but I will be able to  roll over and go back to sleep. I won’t be kept awake with a low. I won’t wonder which direction a high will take even with a correction. I will simply roll over and try to sleep…but I will feel guilty because I can just roll over.

I put in my time. I had 16 plus years of sleepless nights between babies and diabetes.  My son has had 16 years of diabetes too.He doesn’t get an end.  As I said, he has become very conscious of his health and his body.  He told me that he already has one faulty organ, so he has to make sure that he doesn’t have any more.

He is growing up.  He is a young adult now. He takes most  things in stride.  I still wish that he could have an end to testing, injecting, carb counting, lows, highs and all of the rest.  Wishing doesn’t make it so. Feeling guilty doesn’t change allow us to change places.  This is just the way it is.   I will keep wishing for that day when I can say “that was the way it was.”

tired

Dear Diabetes, You are 16 now…

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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.

 

16 years has changed some things but not everything

16 years ago my son was sick. He was lethargic and whiny. He drank a lot. He went through a crazy number of diapers. The doctor we took him to said he had the flu. We learned the difference a week later.

A lot has changed in 16 years. Not as many people use NPH any more. Lantus and Levemire are now the norms for basal insulin. Insulin pumps are readily available for most children with diabetes in Canada. Glucometers now read your blood glucose levels in a matter of seconds.

16 years ago, I was my son’s primary caregiver. I was the one to test and inject. I counted his carbs and watched for signs of highs or lows. Today my son does it all himself. I have no idea what his last A1c was. I can’t tell you what his reading was a 3pm yesterday let alone what it was at 3am. He is an adult now, struggling to make his way through adult care and its regulations.

Today parents can turn to Facebook for a variety of support groups. The internet offers a treasure trove of resources and information. 16 years ago, our house didn’t have the internet. I didn’t have a cell phone. I was put in touch with one family whose daughter was diagnosed just weeks before my son. We were both lost and working to just stay ahead of the numbers.

I read about parents of newly diagnosed children and hear many of the same fears echoed as we had 16 years ago. They are inundated with information and overwhelmed by what has just happened to their family. They are given tools and worry if they are doing it “right”. Eventually they will learn that there is no right, only what works for them and their family to keep their loved one safe and healthy.

I read about parents who advise the newly diagnosed to “get a CGM” and smile to myself. I remember when they were only available in a hospital and you didn’t know if it was calibrated properly until it was brought back to the hospital to have the results were analyzed. A CGM was a dream that is now a reality.

I have also watched our children become attached to more and more equipment. 16 years ago, the insulin pump was for those with the deepest pockets or the best private insurance. It was a physical reminder of a disease that had previously remained hidden in behind closed doors and in washrooms. Now many people with diabetes are able to take advantage of sensor augmented pumps–wearing a site for insulin to be delivered as well as another sensor to detect bg levels. The technology is amazing.

A recent story in social media reminds us not to become overly confident in that technology however. The story of Jedi the dog, showed that sensors can be off but thankfully that dog’s nose was bang on. Diabetes awareness dogs–again something that has sprung up in the past 16 years. There have always been service dogs. There have always been pets that seemed to know when their owner was high or low but now you can purchase or train your pet to detect the pheromones released with highs and lows. It’s an incredible thing.

A lot has changed in 16 years. My children are young men. Phones have moved from something that tethered you to the kitchen wall to devices that you carry in your pocket and access the world. Insulin pumps have become smaller and now talk to sensors that monitor blood glucose.

Sadly, some things haven’t changed. Care and access to devices can still depend on the size of your wallet or the quality of your private insurance. A cure is still something that some dream about and others have all but given up on.

16 years ago today I did not know the dramatic turn my life would take. I did not know the steep learning curve that I would find myself on. I did not know the incredible friendships that I was about to make. It has not been an easy path with diabetes tagging along but it has brought a lot of blessings with its trials.
16 years

Lettuce, Needles, Insulin, Sites…Oh my!

supplies andmore
Diabetes is expensive.

It is not a statement that needs debate.

It is not a statement that requires a disclaimer. Diabetes is expensive.

In order to stay healthy, a person with diabetes requires daily supplies that can include everything from candies or some sort of sugar for lows, insulin to sustain life and combat highs, test strips to check and see where blood glucose levels are and much,much  more.

They, like everyone else on the planet, require healthy meals filled with fresh fruit, fresh vegetables and lean protein.  Shopping for healthy foods is expensive.

Diabetes related medical supplies, healthy meals…they are all costly but if a person with diabetes is not purchasing these items and keeping themselves healthy then the costs continue to go up for themselves and for society.

A person with diabetes who does not or cannot take proper care of themselves will find themselves sick.  This often means that they will miss time from work.  Missed work means less tax dollars for the governments and a strain for the employers.

If the person with diabetes finds themselves in an even worse physical state, they may need to be hospitalized.  We have talked before about how expensive that can be.

What is the solution? I can’t say that I know for certain.

We need access to the best supplies and training for all individuals.  How would that best be done? Again, I am not sure but my thoughts run along the lines of improved private plans in the workplace. I would also like to see the availability of expanded insulin pump programs in all provinces or at least access to income based subsidies for these items.

Right now families having to fundraise to purchase the basic supplies for their loved ones. There is something fundamentally wrong with that in my opinion.

We need more reasonable access to “healthy” groceries.  Last week, I went to pick up a few things for the weekend.  I have developed a gluten intolerance and my partner is currently on a weight program that provides him with most of his own food.  This means that I was buying only fruits, vegetables, and dairy products.  I did splurge and buy two small roasts as well.  Our total bill for three bags of groceries was over $160.

In Canada, and in other countries I am certain, we need change.  A “Sugar tax” has been thrown around repeatedly as an option but many people with diabetes see that as a slap. Sugar is what keeps them alive when insulin fails them.  They pay for supplies. They pay for healthy food and now they will be penalized for the sugar that may save their lives. There is something wrong with that.

There is still a lot to do still.  The answers are not always as clear as they first appear but we will keep working. We will keep trying to keep people with diabetes alive and healthy…until there is a cure.

Are we too quiet?

I had a conversation this morning that has left me thinking, wondering, planning, dreaming….

The conversation was about patient engagement, access to medications and much more. It was very interesting and a bit refreshing.

The ins and outs of the conversation are neither here nor there.  What got me thinking however was his claim that after working for years in the realm of cancer drugs, he found that support for new drugs in diabetes was much more lacking. He didn’t see the same enthusiasm and support from groups and individuals that there was in the world of cancer.

All of this got me thinking. How could we be louder? I know that patients love to see new technologies but sadly often can’t afford them. What if working with by pharma companies, access could become easier? What if we are too quiet? What if we weren’t talking to the right people? How could we fix that?

I wondered if we need one super diabetes advocacy group.  A group that wasn’t bothered by anything but advocacy. It wouldn’t do walks, build camps, or even fund research.  It would  focus solely on issues of concern to those living with diabetes.

It would advocate for fairness… Fairness for children in schools.  Fairness for adults in the work place to have access to quality care through private and public insurance.  Fairness for our seniors to have the proper tools to look after their diabetes needs.

Who would it talk to? Everyone! This would be a group that would unite grassroots organizations all over the country. Instead of each province, each town, or individual fighting on their own, it would draw on the wisdom, experience and knowledge of the group.  Together they would talk to governments, agencies, insurance companies if need be.  They would educate and advocate for improvements.

Where would this super group meet? Online of course.  If we are looking at a power house that reaches the entire country then online meetings would be the logical choice.  Group, in person brainstorming would be great now and then but that would cost money.

Money. That’s another issue of course. Yes, this super group would have to find a way to fund itself.  It would have to be able to compensate people for some of their time.  It would have to be able to find a way to pay for travel and meetings with people.  I have no idea as to how that would work.  I have never taken this dream to reality.  That’s why its still a dream.

Back to the basic group however.  It would be made up of people…real people living in every area of the country who are currently fighting for change.  These people would have a background and a network that they would represent when they came to the super advocacy table.

The group would have people knowledgeable in numbers and finance.  There would be people with a scientific background who could amass journal data.  There would be people knowledgeable in media who would change our reputation from quiet and passive to strong and loud.

What do you think of the idea of a group dedicated to advocacy alone? Again,  group that would not fund research or send kids to camp.  It would not provide pumps or supplies.  It would seek access for everyone. It would seek access to safety in schools. It would seek access to the most advance medical technology at a reasonable cost.  It would seek fairness amid insurance companies. It would seek assistance for seniors.

What else would your super group need? Who would you want to see involved? How would you fund it? What would you do to make the voice of the Canadian diabetes community louder?

Please let me know.  This really has me thinking. Hopefully it has you thinking as well. super cape